A week ago Matthew was able to secure a spot at Healy House, which is a 3 week respite program run through Parson's. I had tried to get him into this program in the past when we were in crisis, but there were no openings. Thankfully, as things bottomed out last weekend, an opening became available at healy house.
When I first brought Matthew, it was all I could do to not go back and pick him back up again. While the setting is more home like than a hospital, I did not get the best feeling from the staff initially, and I was panicked. At healy house Matthew goes to his own school, and he continues to go to the YMCA afterschool program. As I tried to tell the staff matthew's schedule, it kept getting confused, and I was panicked that if they couldn't keep his schedule straight how in the world would they keep the important stuff like his medicines straight?
Luckily, when I had some time to talk to some friends, I gained some perspective and decided to leave Matthew at Healy house. This has been a transition for me, and I am sure for him. The rules are very different than in the hospital. Parents are encouraged to visit, take their child home and even take their child overnight while they are staying at Healy House. Parents have a much bigger say in what their child is doing at Healy House and it is more of a partnership than the hospital where the doctors and therapist guide decision making.
I have taken matthew home a few times, but it is stressful to decide how often to go see him, or take him home. I am struggling with the pressure about how often he should be with us, and how to best use this time as a break for me and the boys to rejuvenate for when Matthew comes home.
The biggest struggle I am still dealing with is the fact that when I call to check on Matthew I hear "he is great", "he is doing well" or "no problems". I always internalize this to mean, "we can take care of him, so what the hell is wrong with you?" Luckily, in the midst of an emotional breakdown today, I called Healy house and after hearing one more time how "great" matthew was doing, I asked the Head of Healy House, a wonderful, caring young man, if the boys and I could come visit Matthew at Healy house and if he would then give me feedback as to how to improve my relationship with Matthew.
While I didn't learn too much more about Matthew- he was distracted, edgy, and struggled with relationships, but also funny and cute and endearing, I did get an earful about how Matthew is really doing and I got to participate in the House Meeting.
The House has a meeting at least 3 times each day where the kids and staff check in and everyone is asked how they are feeling and then they are asked what their goal is for the day, and who can help them reach their goal. I love that the kids ask the staff how they are feeling and what their goal is- what a great way for staff to model emotions for the children. I also like that the kids have to say who can help them succeed with their goal because so often we can't reach our goals alone.
What I saw during the house meeting, was the other kids were very aware of the routine, and waited their turns, and Matthew continuously was trying to take over the meeting and guide who was to talk. I also noticed Matthew's inability to concentrate on what was being said, in relation to the other kids who all stayed sitting and listened to each other. Matthew wiggled and fidgeted, spoke out of turn, and was intrusive- all of these things we struggle with all day, every day, and exhaust me, leaving me less reserves for when we are dealing with the bigger issues. matthew did respond to multiple redirections from the staff, which is why they say he is "doing great" but then again, there were three of them who each had to redirect him only once or twice, rather than me who would have dealt with it all alone.
The best time of our visit though was when I met with Tim, the house manager of Healy House. Apparently he had tried to call me twice this weekend to talk to me about incidents with Matthew- both were of major concern to me, but because they are just getting to know Matthew, they were concerned but not panicked. Tim was concerned with some of Matthew's interactions with the female staff, and he also described an incident where Matthew threw his bowl when he couldnt have more food, but that as Tim walked into the room, Matthew stopped tantrumming over the food. Tim attributes this to the fact that Matthew likes Tim, I agree it is likely because he really likes him, but also because he is a man, and a new face into the situation when matthew was mad which is likely to diffuse the situation.
There were also some incidents of cursing, and name calling and struggles during Kickball games which led to Matthew sitting out. Essentially, Matthew is showing many more of the behavior struggles at Healy House than I would have expected. Typically in the hospital setting there is a honeymoon period, Matthew has not had a honeymoon period at Healy House. So essentially, them telling me that Matthew is "doing great" is another way of saying Matthew is being matthew. He has not hurt anyone, which is great, but he is struggling consistenly throughout the day.
I never want Matthew to struggle, however, I also have to know that there is no magic key to making Matthew better. If there is one, I am willing to move heaven and earth to find the key and use it. So, when I call and ask "how is Matthew" to hear that he is great, when he is cursing, and angry and bothering the other kids, is not truly accurate, and simply is leading to me beating myself up, for no reason.
The definition of insanity is doing the same thing over and over again, when it didn't work the first time. I struggle and have struggled with others being able to work with matthew better than me, since he was tiny. I always think I have done something wrong. That if only I did X it would all be better. There is a rational side of me that knows this isnt't the truth. Sure, we can all be better parents sometimes, but for the most part, I am doing the best I can by Matthew.
If others who work with him would describe "what actually is happening" rather than just telling me things are great, it would go a long way to me building back my self esteem as a parent, and then having honest conversations about how to problem solve with Matthew when they are dealing with an issue I deal with.
I am thankful that Tim was able to have this conversation with me today, and I am thankful that Matthew will have the experience of working with Tim over the next 2 weeks. Tim has a gentle, kind manner, that Matthew seems to really listen and respond to. Tim seems to have a gift for working with children in need, and maybe, just maybe, as Tim talks to matthew, Matthew will listen and will hear things and make some progress.
Tuesday, December 27, 2011
Monday, December 12, 2011
plugging away and hitting brick walls at every turn
I think the thing I am struggling with currently more than anything is the time it takes to try to do the best possible for Matthew. See, everyone seems to agree, what matthew needs to be as successful as possible is residential programming. Unfortunately, the avenue to residential programming seems to be non existent. It isn't like you find out what to do and then step by step go through the process of finding the right program. Instead, everywhere I turn there is a dead end. Quality programs have been closed due to budget cuts. I have spoken to the hospital, they don't seem to have a list of program options. i have spoken to the service coordinator, he does not have a list of program options.
Our family therapist called the intake worker at Parson's, a local program that helps children and families, she said that most of the programs have closed for children with developmental disabilities. It is simply not possible to afford to keep these programs open, there is no money.
Today I had appointments to apply for Social Security Benefits for Matthew and David. Apparently, for children with life long disabilities, there is a program that will give the kids SSI benefits. My hope was that if Matthew qualified for SSI that I could then afford to purchase more respite hours for Matthew which would provide more support for Matthew while he is at home. Sadly, none of the 5 people who told me I HAD to apply for this told me that my income would disqualify the boys for coverage. Even when I spent over an hour on the phone with the people from SSI to find out if the boys could qualify for I was told they may qualify.
Imagine my frustration when I took the day out of work to spend the day at Social Security, and no sooner did I walk in, then I was told that my boys didn't qualify based on my income. Now please know, I am the director of a not for profit child care program. My income is far from fabulous! However, if it is an easy formula that tells SSI whether a child qualifies or not, isn't it possible that this formula could have been run through BEFORE I took the day out of work, and spent 10 hours organizing all of the boys files and filling out a million forms. I had to tell SSI all of the doctors the boys have ever seen, gather the names of all of their educators, therapists, dates of all doctors visits, gather contact info for anyone who has ever worked with them, and it was all for naught! Talk about frustration.
In addition to all of this, our morning once again started with Matthew having a tantrum. He has only been home 7 days, and yet this morning he again refused to get on the bus. I called a friend to come and get Jacob, and then I spent an hour at home with matthew helping him get calm enough to go to school. Finally, he got in the car and we drove to school. No sooner did we get in the parking lot, and he again exploded. He refused to get out of the car, he refused to go into school, he then refused to go into the classroom. The principal was out of ideas. She had no idea how to help get him ready for school, so I suggested that I had just heard of a new school counselor who was working with the Mobile Crisi Unit. She put a call into the Mobile Crisis unit, again, the focus on CRISIS- as in person having a MAJOR problem. PERSON IN NEED OF IMMEDIATE HELP. and guess what, she was told that there was no one at the Mobile Crisis Unit who could help us, they were busy!
I then suggested that since Matthew still wouldn't go into school, that maybe she should call for the safety officer of the district to see if he could help us get Matthew into school. By the time the safety officer got to school, Matthew had finally settled and was ready to go to his classroom. Because he had been dangerous when the bus came this morning, the prinicipal wanted the safety officer to remind Matthew of bus safety, which the safety officer did and then Matthew went on to school. I then asked the safety officer what else I should be doing- as it is a state law that kids have to go to school. This year, while Matthew has been at home, every single week there has been a day when he would not go to school and it has taken me over an hour to get him to school and into the school day each time. No working parent has time for this. It is Matthew's disabilities that create this problem. We have to come up with some sort of protocol as to what will happen if Matthew will not get on the bus to go to school.
I am not sure what the next step is, I have no choice but to keep plugging away to see what I can do to find sucess for everyone. I am thankful that there was no violence ths morning, just tantrumming and anger on Matthew's part. That is a positive which I am thankful for, however I need us to find a path without dead ends. There have to be answers, because one can only bang their head against a brick wall for just SO long before the wall falls down.
Our family therapist called the intake worker at Parson's, a local program that helps children and families, she said that most of the programs have closed for children with developmental disabilities. It is simply not possible to afford to keep these programs open, there is no money.
Today I had appointments to apply for Social Security Benefits for Matthew and David. Apparently, for children with life long disabilities, there is a program that will give the kids SSI benefits. My hope was that if Matthew qualified for SSI that I could then afford to purchase more respite hours for Matthew which would provide more support for Matthew while he is at home. Sadly, none of the 5 people who told me I HAD to apply for this told me that my income would disqualify the boys for coverage. Even when I spent over an hour on the phone with the people from SSI to find out if the boys could qualify for I was told they may qualify.
Imagine my frustration when I took the day out of work to spend the day at Social Security, and no sooner did I walk in, then I was told that my boys didn't qualify based on my income. Now please know, I am the director of a not for profit child care program. My income is far from fabulous! However, if it is an easy formula that tells SSI whether a child qualifies or not, isn't it possible that this formula could have been run through BEFORE I took the day out of work, and spent 10 hours organizing all of the boys files and filling out a million forms. I had to tell SSI all of the doctors the boys have ever seen, gather the names of all of their educators, therapists, dates of all doctors visits, gather contact info for anyone who has ever worked with them, and it was all for naught! Talk about frustration.
In addition to all of this, our morning once again started with Matthew having a tantrum. He has only been home 7 days, and yet this morning he again refused to get on the bus. I called a friend to come and get Jacob, and then I spent an hour at home with matthew helping him get calm enough to go to school. Finally, he got in the car and we drove to school. No sooner did we get in the parking lot, and he again exploded. He refused to get out of the car, he refused to go into school, he then refused to go into the classroom. The principal was out of ideas. She had no idea how to help get him ready for school, so I suggested that I had just heard of a new school counselor who was working with the Mobile Crisi Unit. She put a call into the Mobile Crisis unit, again, the focus on CRISIS- as in person having a MAJOR problem. PERSON IN NEED OF IMMEDIATE HELP. and guess what, she was told that there was no one at the Mobile Crisis Unit who could help us, they were busy!
I then suggested that since Matthew still wouldn't go into school, that maybe she should call for the safety officer of the district to see if he could help us get Matthew into school. By the time the safety officer got to school, Matthew had finally settled and was ready to go to his classroom. Because he had been dangerous when the bus came this morning, the prinicipal wanted the safety officer to remind Matthew of bus safety, which the safety officer did and then Matthew went on to school. I then asked the safety officer what else I should be doing- as it is a state law that kids have to go to school. This year, while Matthew has been at home, every single week there has been a day when he would not go to school and it has taken me over an hour to get him to school and into the school day each time. No working parent has time for this. It is Matthew's disabilities that create this problem. We have to come up with some sort of protocol as to what will happen if Matthew will not get on the bus to go to school.
I am not sure what the next step is, I have no choice but to keep plugging away to see what I can do to find sucess for everyone. I am thankful that there was no violence ths morning, just tantrumming and anger on Matthew's part. That is a positive which I am thankful for, however I need us to find a path without dead ends. There have to be answers, because one can only bang their head against a brick wall for just SO long before the wall falls down.
Wednesday, November 23, 2011
you can learn alot from a 5 year old
Throughout the time that Matthew has been in the hospital, it has become apparent to me that as Jacob has gotten older, he has some real feelings about being Matthew's brother and all that has gone on with Matthew.
I am thankful that Jacob has wonderful teachers, an amazing speech therapist, and other adults in his life who are able to help me monitor how Jacob is doing. These adults have been safe for Jacob, and he often will seek them out to share his thoughts and feelings.
Jacob has made it clear that he feels safe when Matthew is in the hospital, and that he is worried when Matthew comes home. Jacob and I have been doing a lot of talking about this recently, and I have realized that it is important that I create a plan for when Matthew comes that keeps Jacob feeling safe.
Matthew's therapist at 4 Winds and I decided that it would be good to have Jacob and David come in to meet with her and Matthew while Matthew is still in the hospital. Because Jacob is so verbal, we decided to bring Jacob in to meet with Linda, the social worker, today and that we would bring David in next week.
I was amazed at how much Jacob shared. His thoughts are very clear, and he is very aware of how he feels. When Matthew gets angry, Jacob is scared. When a friend comes and takes him to their house, he feels better. Jacob needs to know that I will call someone if Matthew is angry, so that he can go to a friends house and feel safe. Also, Jacob was able to tell Matthew that he goes to my room when Matthew is mad, and he needs Matthew to stay out of there when Matthew is angry. This is Jacob and David's safe spot, and it is scary for him when Matthew comes in there.
Jacob was amazing at talking to Matthew. He told him how he feels, he shared that he misses him when Matthew is in the hospital, but that he likes that it is quiet at home, and not scary. I was so proud of Jacob and how he was able to take care of himself and verbalize his thoughts today. As the meeting was wrapping up, I was talking to Linda about having David come in to do a similar meeting. I asked Jacob if he thought that was a good idea, to which he said, "yes, David should come, I will come with him, he will like that". My heart melted. Jacob may be the youngest in my family, but he is aware that his brothers have some limits. He seems to be aware that in many ways Jacob takes care of David and speaks for both his thoughts, but also David's thoughts. Linda and I told Jacob that we will definitely have David come and meet with Matthew, and then asked him to tell David that meeting with Matthew is ok at the hospital, and that Matthew listened.
Well, we got home a few hours later and got David off the bus. David and Jacob immediately started playing, and as I walked by, I heard Jacob tell David, "you will meet with a lady at 4 winds. It is good. You will talk to Matthew. He will listen"
I could not believe how much Jacob had taken away from our meeting today, and how he shared it all with David. While David did not answer Jacob, I could tell that David was thinking about what Jacob said, and that David heard Jacob.
I am thankful that we have this next week to keep talking about what we will do when Matthew comes home. My first priority will be ensuring that Jacob and David know that I am aware that they need to feel safe. Even if Matthew is just yelling, he is loud and it can be scary. Matthew is so limited cognitively that he struggles to see that his actions have an impact on those around him. I truly believe that if Matthew had any control he would never want to scare his brothers or make them afraid, but sadly, Matthew's brain damage does not allow him to have the ability to stop himself when he is angry, so it is up to me to ensure that I do all I can to create time for Jacob and David to have calm and quiet even after Matthew comes home. I am in the process of enrolling Matthew in a respite program where he can go for a weekend, so that David and Jacob and I have a weekend each month to just be the 3 of us. To enjoy the quiet and predictabliity that is not always possible when Matthew is home.
Life is in many ways a balancing act when you are dealing with a child with mental health and developmental issues, and when you have more than one child to care for. I am thankful that Jacob is sharing his needs with me, so that I can ensure that each of my boys is getting what they need from me, and from the world around us. I am proud to be Jacob's mom. I know that I am raising a strong, little boy who will have a major impact on the world because of all that he learns from being david and Matthew's brother. I am impressed by Jacob's ability at the age of 5 to clearly state what he needs and to be able to talk to Matthew and tell him what he is afraid of. I am also proud of Jacob's ability to offer love and support to David as they travel this path together.
Today I am proud of my boys, all 3 of them! and I am beyond thankful for all of the lessons I have learned by simply being their mom.
I am thankful that Jacob has wonderful teachers, an amazing speech therapist, and other adults in his life who are able to help me monitor how Jacob is doing. These adults have been safe for Jacob, and he often will seek them out to share his thoughts and feelings.
Jacob has made it clear that he feels safe when Matthew is in the hospital, and that he is worried when Matthew comes home. Jacob and I have been doing a lot of talking about this recently, and I have realized that it is important that I create a plan for when Matthew comes that keeps Jacob feeling safe.
Matthew's therapist at 4 Winds and I decided that it would be good to have Jacob and David come in to meet with her and Matthew while Matthew is still in the hospital. Because Jacob is so verbal, we decided to bring Jacob in to meet with Linda, the social worker, today and that we would bring David in next week.
I was amazed at how much Jacob shared. His thoughts are very clear, and he is very aware of how he feels. When Matthew gets angry, Jacob is scared. When a friend comes and takes him to their house, he feels better. Jacob needs to know that I will call someone if Matthew is angry, so that he can go to a friends house and feel safe. Also, Jacob was able to tell Matthew that he goes to my room when Matthew is mad, and he needs Matthew to stay out of there when Matthew is angry. This is Jacob and David's safe spot, and it is scary for him when Matthew comes in there.
Jacob was amazing at talking to Matthew. He told him how he feels, he shared that he misses him when Matthew is in the hospital, but that he likes that it is quiet at home, and not scary. I was so proud of Jacob and how he was able to take care of himself and verbalize his thoughts today. As the meeting was wrapping up, I was talking to Linda about having David come in to do a similar meeting. I asked Jacob if he thought that was a good idea, to which he said, "yes, David should come, I will come with him, he will like that". My heart melted. Jacob may be the youngest in my family, but he is aware that his brothers have some limits. He seems to be aware that in many ways Jacob takes care of David and speaks for both his thoughts, but also David's thoughts. Linda and I told Jacob that we will definitely have David come and meet with Matthew, and then asked him to tell David that meeting with Matthew is ok at the hospital, and that Matthew listened.
Well, we got home a few hours later and got David off the bus. David and Jacob immediately started playing, and as I walked by, I heard Jacob tell David, "you will meet with a lady at 4 winds. It is good. You will talk to Matthew. He will listen"
I could not believe how much Jacob had taken away from our meeting today, and how he shared it all with David. While David did not answer Jacob, I could tell that David was thinking about what Jacob said, and that David heard Jacob.
I am thankful that we have this next week to keep talking about what we will do when Matthew comes home. My first priority will be ensuring that Jacob and David know that I am aware that they need to feel safe. Even if Matthew is just yelling, he is loud and it can be scary. Matthew is so limited cognitively that he struggles to see that his actions have an impact on those around him. I truly believe that if Matthew had any control he would never want to scare his brothers or make them afraid, but sadly, Matthew's brain damage does not allow him to have the ability to stop himself when he is angry, so it is up to me to ensure that I do all I can to create time for Jacob and David to have calm and quiet even after Matthew comes home. I am in the process of enrolling Matthew in a respite program where he can go for a weekend, so that David and Jacob and I have a weekend each month to just be the 3 of us. To enjoy the quiet and predictabliity that is not always possible when Matthew is home.
Life is in many ways a balancing act when you are dealing with a child with mental health and developmental issues, and when you have more than one child to care for. I am thankful that Jacob is sharing his needs with me, so that I can ensure that each of my boys is getting what they need from me, and from the world around us. I am proud to be Jacob's mom. I know that I am raising a strong, little boy who will have a major impact on the world because of all that he learns from being david and Matthew's brother. I am impressed by Jacob's ability at the age of 5 to clearly state what he needs and to be able to talk to Matthew and tell him what he is afraid of. I am also proud of Jacob's ability to offer love and support to David as they travel this path together.
Today I am proud of my boys, all 3 of them! and I am beyond thankful for all of the lessons I have learned by simply being their mom.
Monday, November 14, 2011
update on Matthew
On Thursday I had a meeting at 4 Winds with Matthew's therapist and the Senior Psychiatrist,Dr Alessi,at the hospital. I was expecting to have our weekly meeting with the therapist to find out how Matthew was doing, and to learn more about the direction and plans for Matthew while he was in the hospital. After I signed into the hospital I saw Dr Alessi and said hello. Then as I drove to Matthew's unit, I realized I was following Dr Alessi's car. When we both got out and walked towards the door, I was suprised when Dr Alessi said that he was coming in to meet with me and the therapist.
The therapist started our meeting by saying that she needed me to make sure I was taking care of myself. That it was important for both me and the boys that I begin to take time to allow myself to cope with the reality of being Matthew's mom. She was clear that Matthew is a child with lots of positives- cute, entertaining, loving, endearing, but also a lot of struggles- he is cognitively much more limited than he appears when you just chat with him. He also has no ability to delay gratification. His brain is damaged, and part of what is damaged is his ability to cope when things do not go as matthew wants. His inability to cope leads to huge explosions, explosions that are tremendously out of proportion to what has occurred and this is what creates the dangerous situation for Matthew and the rest of us in his family.
The therapist is concerned that I have not allowed myself time to cope with these realities. She says that I present as a very strong woman with a lot on my plate, and she is concerned that with 2 children with considerable needs, and a 5 year old, I need to make sure that I have someone to talk to, especially as things with Matthew continue to progress.
The psychiatrist then laid out for me the reminder that children with FAS have damaged brains. This damage makes it very challenging to treat them with medication. For example, if you have a broken arm, and you take advil, the advil does not fix the break, it just fixes the pain while you wait for the bone to heal. We are looking for a medication that allows Matthew to remain a little calmer so that when life upsets him, he does not get SO upset. Sadly, his brain does not process medication the way that typically developing people do, and the damage is so severe that finding a medication that will truly work is unlikely.
He is currently adjusting the medication that matthew is on by increasing the dosage. I would like to say that we are seeing some amazing changes, but sadly this week has been a harder week for Matthew. He is struggling and seems to be on edge. He is struggling with the other kids at the hospital and taunting and teasing them.
It seems like for Matthew it is mostly a cycle of phases. I am not certain that any of the medications Matthew has taken really have an impact on him. The cycles are just intense for him- a few good days, which means less tantrumming, and slightly less intensity in his relationships, but he is still edgey. Then the really bad days- intense tantrumming, almost no ability to be with peers without instigating trouble and being aggressive. And then the in between days. On these days you can enjoy your time with Matthew in short bursts. There are times of happiness where he is fun to be with, but then other times of the day where he is a little edgier.
I am working to accept the reality that when matthew comes home from 4 Winds, he will likely come home the same as when he entered the hospital. I will need to have plans in place to support us when he is struggling. I will need to make sure that on nights that Matthew is edgy that I have a structured routine that he can rely on so that we have the best chance to get through the night successfully.
Realistically, I can say that i have accepted this as our reality. I can say that I know that Matthew will struggle when he gets home. However, I don't know how to really accept that after these 5 weeks have gone by, and David and Jacob and I have enjoyed 5 weeks of calmness, that when Matthew comes home we are all just supposed to accept the new reality and go back to walking on egg shells. David and Jacob have been very clear that they are more comfortable at home without matthew. While they know that we have good friends who wil lhelp us if Matthew is struggling, and they have seen that I react to those struggles by calling for help, no one wants to live in a home that is stressful. No one would choose for Matthew to struggle or for any of us to struggle.
I am beginning the process of looking for residential programming for Matthew. This will be one of the hardest things I do as a mom. But, for all of us it will be the best thing, I truly believe that. Matthew does best when he is with lots of different people who are fresh and can relate to him and be with him without feeling stress. This is why in the hospital, with all of the staff, they each can take breaks when being with matthew becomes exhausting.
For David and Jacob they will get to visit Matthew play with him, and be with him sharing positive times, but if Matthew is edgey or struggling, they will be allowed still to go on with daily life without the intensity of Matthew.
Going through this process will be a challenge. I will have ups and downs that I cannot even imagine, however, I believe that for all of us this will make sense, and it will happen in the right space and time. I look forward to Matthew coming home from 4 Winds, and to being united as a family when he is as healthy as possible and ready to be with us. I know that we will have good times snuggling as a family. We will read together, play together and snuggle together and those moments will be wonderful, as we build memories together. And I am going to begin the process of recognizing that my family may not always live together under the same roof, but we will always be a family of 4 no matter what.
The therapist started our meeting by saying that she needed me to make sure I was taking care of myself. That it was important for both me and the boys that I begin to take time to allow myself to cope with the reality of being Matthew's mom. She was clear that Matthew is a child with lots of positives- cute, entertaining, loving, endearing, but also a lot of struggles- he is cognitively much more limited than he appears when you just chat with him. He also has no ability to delay gratification. His brain is damaged, and part of what is damaged is his ability to cope when things do not go as matthew wants. His inability to cope leads to huge explosions, explosions that are tremendously out of proportion to what has occurred and this is what creates the dangerous situation for Matthew and the rest of us in his family.
The therapist is concerned that I have not allowed myself time to cope with these realities. She says that I present as a very strong woman with a lot on my plate, and she is concerned that with 2 children with considerable needs, and a 5 year old, I need to make sure that I have someone to talk to, especially as things with Matthew continue to progress.
The psychiatrist then laid out for me the reminder that children with FAS have damaged brains. This damage makes it very challenging to treat them with medication. For example, if you have a broken arm, and you take advil, the advil does not fix the break, it just fixes the pain while you wait for the bone to heal. We are looking for a medication that allows Matthew to remain a little calmer so that when life upsets him, he does not get SO upset. Sadly, his brain does not process medication the way that typically developing people do, and the damage is so severe that finding a medication that will truly work is unlikely.
He is currently adjusting the medication that matthew is on by increasing the dosage. I would like to say that we are seeing some amazing changes, but sadly this week has been a harder week for Matthew. He is struggling and seems to be on edge. He is struggling with the other kids at the hospital and taunting and teasing them.
It seems like for Matthew it is mostly a cycle of phases. I am not certain that any of the medications Matthew has taken really have an impact on him. The cycles are just intense for him- a few good days, which means less tantrumming, and slightly less intensity in his relationships, but he is still edgey. Then the really bad days- intense tantrumming, almost no ability to be with peers without instigating trouble and being aggressive. And then the in between days. On these days you can enjoy your time with Matthew in short bursts. There are times of happiness where he is fun to be with, but then other times of the day where he is a little edgier.
I am working to accept the reality that when matthew comes home from 4 Winds, he will likely come home the same as when he entered the hospital. I will need to have plans in place to support us when he is struggling. I will need to make sure that on nights that Matthew is edgy that I have a structured routine that he can rely on so that we have the best chance to get through the night successfully.
Realistically, I can say that i have accepted this as our reality. I can say that I know that Matthew will struggle when he gets home. However, I don't know how to really accept that after these 5 weeks have gone by, and David and Jacob and I have enjoyed 5 weeks of calmness, that when Matthew comes home we are all just supposed to accept the new reality and go back to walking on egg shells. David and Jacob have been very clear that they are more comfortable at home without matthew. While they know that we have good friends who wil lhelp us if Matthew is struggling, and they have seen that I react to those struggles by calling for help, no one wants to live in a home that is stressful. No one would choose for Matthew to struggle or for any of us to struggle.
I am beginning the process of looking for residential programming for Matthew. This will be one of the hardest things I do as a mom. But, for all of us it will be the best thing, I truly believe that. Matthew does best when he is with lots of different people who are fresh and can relate to him and be with him without feeling stress. This is why in the hospital, with all of the staff, they each can take breaks when being with matthew becomes exhausting.
For David and Jacob they will get to visit Matthew play with him, and be with him sharing positive times, but if Matthew is edgey or struggling, they will be allowed still to go on with daily life without the intensity of Matthew.
Going through this process will be a challenge. I will have ups and downs that I cannot even imagine, however, I believe that for all of us this will make sense, and it will happen in the right space and time. I look forward to Matthew coming home from 4 Winds, and to being united as a family when he is as healthy as possible and ready to be with us. I know that we will have good times snuggling as a family. We will read together, play together and snuggle together and those moments will be wonderful, as we build memories together. And I am going to begin the process of recognizing that my family may not always live together under the same roof, but we will always be a family of 4 no matter what.
Sunday, October 30, 2011
jacob's birthday and a visit with Matthew
Today we celebrated jacob's 5th birthday. His actual birthday is on Tuesday, but it is always easier to celebrate as a family on the weekend so, we had his birthday party today at Build a Bear and then we went out for dinner with my parents. Matthew had been looking forward to Jacob's birthday, and we were able to get a pass from 4 Winds for him to go out with us this evening.
The first thing we did after we picked him up was take him to get a haircut! It was great to see him looking so handsome! After that we went out for dinner at Applebee's to celebrate Jacob turning 5.
For the most part, our evening with Matthew was pretty good. He was definitely doing a lot of people watching and observing everyone who came into the restaurant. He was concerned that it was dark outside and had a lot of questions to ask, which to me were signs of anxiety.
At one point Matthew was telling me that he was pretty angry with one of the kids he is with at 4 Winds. This has been something he has been talking about over the past few days. He typically starts off telling me that he is mad at one of the girls because they are mean, and then after I ask him questions, he will finally tell me that he is bothering the kids. Today's story, after lots of prodding, was that he was telling the kids he was going out on pass, but unfortunately, matthew never says anything once.....so I am sure that the kids had heard all day he was going out on pass, and eventually it became bothersome and hurtful to some of the kids. Apparently one of the girls got angry and stuck her tongue out at Matthew and he in turn stuck his tongue out at her. What concerned me was that matthew commented multiple times that he wanted to punch the girl, and hit the girl because he was mad. I reminded him that he needs to be nice to the kids and that he needs to be careful that he is not teasing or bothering the other children.
As I was driving Matthew back to 4 Winds he began to complain that the staff is mean to him. This has become his other main complaint. Unfortunately, he then began to tell me that he was goingt to punch the staff and hurt the staff because they make him mad. He says this as easily as he tells me he is going to get a drink of chocolate milk. No more emotion, no less.
As I brought him inside and checked him back into the unit, Matthew greeted his friends and introduced me. He saw a new staff member and quickly went over and told the person that his name was Matthew. I don't know if it is easier for me when Matthew tantrums and is upset as our visit ends, or if,as tonight, he just rejoins the program at 4 Winds. As I was saying goodnight he asked one of the staff members if he would tuck him into bed......then he gave me a hug and a kiss, told me he loved me and I left.
It took all of my efforts to drive home with the other 2 boys. I don't know how to do this. There is no book to tell me how to be a mom of a child in a psychiatric hospital. There is no support group, or person I can call who truly knows what this feels like. I am not good at talking about how I feel, but as I write it down I can at least get my thoughts on paper and the emotions that are so deep inside me become emotions I can cope with. It is not good to feel like your heart is breaking daily. To be consistently confused, I truly don't know if I am more upset that he is in the hospital or more upset that he might come home soon. When Matthew comes home, life will again become harder. That said, I miss him and his spirit in my house. However, I don't miss the stress and anxiety that comes with never knowing when the next outburst or tantrum will come.
I am hoping to speak to Matthew's therapist tomorrow and to learn more about the plan for Matthew so that I can begin to emotionally plan for the next step in our lives.
Saturday, October 22, 2011
contemplations
There is so much going on right now, and I don't know how to deal with all of it, except to write it down, and reflect. Matthew has been in 4 winds hospital for a week now. We are working with a new social worker, which means that it is taking time for us to figure each other out. I have to figure out how she works, and she has to figure out how to work with me as a mom. With so much going on, and everything moving quickly, it is a lot to do in a short period of time.
The purpose of hospitalization is to adjust medication,stabilize the child and get him out of the hospital as quickly as possible. For matthew they have taken him off one of his medications, and are debating taking him off of another medication, and then possibly adding a new medication. The good news is that in the hospital so far, Matthew is doing well.
There are so many staff constantly working with the children. For 20 children, there are at least 25-30 staff. Each group of 6 children has 3 staff members working with them directly, and then there are nurses, social workers, a psychiatric nurse and a psychiatrist. For Matthew the number of staff is key to his success. There is always someone to help ensure that the structure of the day remains the same. Everything about being in the hospital is predictable for matthew. From the time the kids wake up to the time the children eat each meal evrything remains stable and predictable for the kids.
For Matthew one of the biggest triggers is life bieng unpredictable. In everyone's life there is unpredictability. That is part of what makes life fun, exciting and sometimes hectic and crazy. Sometimes it is unpredictable because an unexpected errand comes up. Sometimes, an appointment runs longer than expected. Sometimes what we plan for dinner has to be changed. All of these unpredictable experiences are a challenge for Matthew.
Yesterday on my visit, his group was going outside at 4:30 and I arrived at 4:20 and did not know that his group was going out at 4:30. We started playing a game, and were having a nice visit, when suddenly Matthew noticed that the kids were going outside. He quickly asked how long i was staying, and I told him I would stay as long or as short as he wanted. (I had just met with the psychiatric nurse, before seeing Matthew, and she explained that Matthew does best with quick visits, because he does not relate to people the way that most people do. With this fresh in my mind, I wanted to have a great visit and allow him to help dictate how long I stayed.) As the kids got their coats on, Matthew said he wanted to go outside, and wanted me to go. As he said this, another little boy walked by and said "you should visit with your mom, visiting with your mom is way better than going outside."
Matthew became focused on going outside, so I encouraged him to ask the nurse how long the kids would be outside for. When he asked, the nurse stressed that the kids would be outside for 30 minutes and it was important to visit with me. Matthew and I finished playing our game and he quickly rushed off to get his coat.
As I walked outside, it started to rain. I looked back to wave goodbye to Matthew and motioned to him that it was raining. As I was getting in my car I realized that I had forgotten to return my visitor's pass. I turned to go back into the building and heard Matthew shrieking. As soon as matthew saw me the shrieks became louder and more intense. He started clawing my arm and screaming that he needed me to stay, Matthew then made a dash for the door. Even just the small disappointment of not being able to go outside was too much for Matthew. I felt horrible. I had stayed a little too long. The rain had come too quickly. I knew he would get outside again the next day, but for him that didn't matter. The staff was able to help calm Matthew down, and I headed for home feeling sad but relieved knowing that matthew had help to calm him down.
I am being told by all of the professionals that in time Matthew will need some sort of residential program to keep him safe and to provide him with the most successful life possible. I am taking this time while he is safe in the hospital to continue to wrap my head around this concept. My head knows that the structure of a residential program will truly help Matthew. My heart wants only what is best for Matthew. The psychiatric nurse and social worker have all said that Matthew thrives in a predictable, regimented program.
My hope and prayers are that right now Matthew will be put on a new medication or by coming off of the old medications, matthew will start to thrive and all of the talk of a residential program will end. My dream is that we will find a solution for Matthew that allows him to go back to living in peace as part of our family. Hopefully we will know more sa the week goes on and hte medications are adjusted......
The purpose of hospitalization is to adjust medication,stabilize the child and get him out of the hospital as quickly as possible. For matthew they have taken him off one of his medications, and are debating taking him off of another medication, and then possibly adding a new medication. The good news is that in the hospital so far, Matthew is doing well.
There are so many staff constantly working with the children. For 20 children, there are at least 25-30 staff. Each group of 6 children has 3 staff members working with them directly, and then there are nurses, social workers, a psychiatric nurse and a psychiatrist. For Matthew the number of staff is key to his success. There is always someone to help ensure that the structure of the day remains the same. Everything about being in the hospital is predictable for matthew. From the time the kids wake up to the time the children eat each meal evrything remains stable and predictable for the kids.
For Matthew one of the biggest triggers is life bieng unpredictable. In everyone's life there is unpredictability. That is part of what makes life fun, exciting and sometimes hectic and crazy. Sometimes it is unpredictable because an unexpected errand comes up. Sometimes, an appointment runs longer than expected. Sometimes what we plan for dinner has to be changed. All of these unpredictable experiences are a challenge for Matthew.
Yesterday on my visit, his group was going outside at 4:30 and I arrived at 4:20 and did not know that his group was going out at 4:30. We started playing a game, and were having a nice visit, when suddenly Matthew noticed that the kids were going outside. He quickly asked how long i was staying, and I told him I would stay as long or as short as he wanted. (I had just met with the psychiatric nurse, before seeing Matthew, and she explained that Matthew does best with quick visits, because he does not relate to people the way that most people do. With this fresh in my mind, I wanted to have a great visit and allow him to help dictate how long I stayed.) As the kids got their coats on, Matthew said he wanted to go outside, and wanted me to go. As he said this, another little boy walked by and said "you should visit with your mom, visiting with your mom is way better than going outside."
Matthew became focused on going outside, so I encouraged him to ask the nurse how long the kids would be outside for. When he asked, the nurse stressed that the kids would be outside for 30 minutes and it was important to visit with me. Matthew and I finished playing our game and he quickly rushed off to get his coat.
As I walked outside, it started to rain. I looked back to wave goodbye to Matthew and motioned to him that it was raining. As I was getting in my car I realized that I had forgotten to return my visitor's pass. I turned to go back into the building and heard Matthew shrieking. As soon as matthew saw me the shrieks became louder and more intense. He started clawing my arm and screaming that he needed me to stay, Matthew then made a dash for the door. Even just the small disappointment of not being able to go outside was too much for Matthew. I felt horrible. I had stayed a little too long. The rain had come too quickly. I knew he would get outside again the next day, but for him that didn't matter. The staff was able to help calm Matthew down, and I headed for home feeling sad but relieved knowing that matthew had help to calm him down.
I am being told by all of the professionals that in time Matthew will need some sort of residential program to keep him safe and to provide him with the most successful life possible. I am taking this time while he is safe in the hospital to continue to wrap my head around this concept. My head knows that the structure of a residential program will truly help Matthew. My heart wants only what is best for Matthew. The psychiatric nurse and social worker have all said that Matthew thrives in a predictable, regimented program.
My hope and prayers are that right now Matthew will be put on a new medication or by coming off of the old medications, matthew will start to thrive and all of the talk of a residential program will end. My dream is that we will find a solution for Matthew that allows him to go back to living in peace as part of our family. Hopefully we will know more sa the week goes on and hte medications are adjusted......
Saturday, October 15, 2011
riding the roller coaster
Maybe I am like most people, and maybe I am more judgemental than most people, it is hard to know......but in this blog, I have committed to total honesty, and so here I am going to tell all.
If I knew someone who had a child that was 10 years old and was placed in a psychiatric hospital 4 times, I would truly wonder what was wrong in the family.
What the parent was doing wrong.
What could be done differently?
I would be very concerned that a family was that broken that the child needed that level of hospitalization within such a short period of time.
I think this is one of the reasons I truly struggle with what is going on in my home. Here I am, someone who would knowingly think another family was doing it wrong, yet it is going on right here in my home.
The last few weeks have been horrid. Of course mixed in with horrid has been some amazing times, but as a whole, it has been intense. I think the hardest thing has been that there is no predictability for when Matthew is going to get angry and it is like constantly walking on egg shells. Sure, most of the time he gets his angriest I can second guess myself and wish I had done something differently, but also for the most part, I truly believe that if he is going to explode it is a matter of when he will explode not if he will explode.
To give you two examples.....
The first one happened on Yom Kippur. I woke up in the morning and the food box, where we keep all of our snack foods, had been locked. Typically we keep the box locked so that I can limit Matthew's access to junk, but the babysitter had accidentally taken the key home, and so it had been left unlocked. When I came downstairs to get the cereal, I found the box to be locked.
Now I was 99% certain that I had gone to bed with the box unlocked, but it seemed odd to me that Matthew would lock it, so I asked him what had happened. He did an amazing show of going to look for the key, and denying he was the one who went into the lock box. I truly thought for a few moments that I was going crazy. Maybe the sitter didnt take the key home as I had thought. Maybe I locked it, but I couldnt find the key, so I didn't think that was possible.
Since we were getting ready to go to services, I decided to drop the topic, and I texted the sitter to find out if she had the key.
We had a great time at services, and when I got back in the car, I had a text from the sitter saying she did have the key. So now, I had to ask Matthew again, how did the box get locked. After more rounds, he finally admitted he had taken the extra key and gotten in the box and then locked the box with the extra key. Now my frustration are many fold here...
1. if he was smart enough to get the extra key, why can he not figure out that I am going to be frustated when he goes into the box, he knows he is not supposed to go into.
2. If he was sly enough to do a big show of looking for the key, why was he not sly enough to understand that he would be in better shape if he simply told me, on the first try, that he had used the key, gone in the box and was sorry.
At a loss, I decided that there had to be a consequence for him not telling the truth about his behavior, so I told him since he had been dishonest and had eaten too much unhealthy food in the morning, I would have to supervise closely what he ate at dinner time that night.
Matthew immediately fell on the floor in hysterics. He ranted and raved, screamed and cried, and was out of control. By contrast, my father was here, and just kept telling Matthew over and over again, that this was no big deal. I always pick his food and supervise what he eats, so I would just be doing the same thing at dinner tonight. It was over an hour before Matthew calmed down. He got in the car with my father to head to their house, and was still upset. He tried to get out of the car as my dad was driving out of the driveway. He basically was just raging and out of control. After a while, he settled and had a good rest of the night. He was a little on edge, but for the most part it was a decent evening.
The other example happened the other morning. I woke up and Matthew was not asking for breakfast- this is highly unusual behavior for matthew, and likely I should have just left it alone. However, he was heading to school, and like all good parents I wanted to make sure he had something in his stomach before heading off to school. When I asked him what he ate for breakfast he told me a cheese stick and an orange. I noticed that there weren't any orange peels around, but I basically just went on with my morning.
Matthew became furious when jacob started to eat breakfast. He raged that he had NOT eaten, he needed food, he was starving. He ran out of the house, screaming and throwing things. He came back in the house and was throwing blocks, and trucks. I told Matthew calmly that he needed to calm down. That anything he threw would be thrown away or put away because he could not have toys that he was going to throw. He threw another truck at me, so I took the truck and threw it out, he threw a block at me so I reminded him that the blocks would now go to the basement. He raved for over 30 minutes. In that time, his school bus came, but he would not get on the bus. Finally, after he took a bat and was swinging it at me, I told him if it did not stop I would need to call for help. When he swung the bat again, I called 911 for help. The safety officer for our school district responded, and he was fabulous. He was helped calm matthew down, and then told him it was time for school and time to clean up.
After he cleaned up, he got his bag and got in the car for school. I filled in the school principal about our morning, and headed off to have a day with jacob, because he had the day off from school, and I had the day off from work. Two hours later I got a call from 4 Winds. I had called them over a week ago, asking for a bed, because of Matthew's agression and they didnt have a bed at that point. It was hard to get a phone call yesterday saying they had a bed. It had been an emotionally exhausting morning, and I was feeling drained. However, it made no sense to say that we didnt need 4 winds on the day that we had the police at our house. That was an odd statement to make.
After lots of thinking and weighing the options, I decided that Matthew needed more help than I could give him at home. What I never want to do is feel guilty that I didnt keep the other boys safe, or that Matthew hurt himself in anger. I never want to look back after something major happens and say I should have or wish I had ....... So I once again brought matthew up to 4 winds. I met with his doctor at the hospital, who again reminded me that he has a very damaged brain. That his brain will not respond as we want to medications. He reminded me that he wants matthew to be as healthy as possible, but that the next meds we will use come with worse potential side effects.
he also reminded me that the staff at 4 winds cares for Matthew, and is there to help him. When I brought him to his unit, he was greeted kindly by staff, who call him "Bloomer". This is never a place I imagined being with my son. I never ever thought that the psychiatric hospital would be somewhere he went once, let alone more than once, or 3 times in 6 months.
I never thought this would be parenting for me, and all I can hope is that we will find the medication that will help Matthew to be the best matthew he can be.
Saturday, October 1, 2011
an update
So much has gone on since I last wrote that it has taken me a long time to process it all and be able to sit down and write again. I think the hardest thing about being a parent of children with special needs is you never know what to blame problems on or even where to attribute life's successes.
This summer was horrendous for matthew. I wasnt sure we would survive it together and there were weeks that I had to do the unthinkable and begin to research residential programs for Matthew. In a nutshell, his summer school experience ended with mobile crisis being called two days in a row because he was so out of control. He had been fine both days going to school, but as we pulled into the school he became furious and was unable to be calmed back down. Each day after taking an extra clonodine and over an hour of a tantrum, he was able to settle. It is heartwrenching to see your child in agony like this. To know his brain is being tortured and there is nothing you can do to help him. It was horrendous to watch and to be a part of, and exhausting two days in a row.
matthew ended the summer at an amazing summer camp for children with special needs. I was worried about sending him, but also knew the boys and I needed the break, and that most likely Matthew would do well at camp. For Matthew, if he isn't comfortable with you, it is highly unlikely that you will see him struggle. I knew in 7 days of camp there was no way he would become comfortable, and he would be so busy, so I sent him with the hope that he would be successful.
He not only was successful, but he thrived at camp- it was a group of 10 children, all with special needs. 5 boys, and 5 girls and a wonderful staff! My hope is that they will have found enough success with this program to offer it again next summer and that eventually David and Matthew will both have the opportunity to experience a jewish summer camp.
The school year has started relatively well. David has grown in so many ways- I have not caught up to where he is and how capable he has become. My brother purchased an IPAD for David over the summer and it has been life altering. David has never been able to use a mouse, so in this age of technology he has been deprived all of the computer games that are part of life for children. Well, less than a day after getting the IPAD David was making up for lost time. It is so wonderful to see him playing games, doing puzzles, and entertaining himself and totally happy.
Largely in part to the reading APPS, and amazing teachers, and I think he was just ready, David is now reading! I never thought I would see the day that he would read! david loves books, given a chance, he sleeps with books, so to see him have the pleasure of reading makes my heart absolutely burst!
Last week David was given his first spelling assignment. I have to admit, I went into a cold sweat.....what was the teacher thinking? David can hardly write his name and this is after years of trying and practice. How was he going to do spelling? Was this a mistake? An error? a cruel joke? No, it was our new reality because David was ready! He got 4 out of 5 words correct, and the word he got wrong was "or" which he spelled "ro", so that was pretty close! He and I are doing Math homework each week now, practicing spelling, and he is inquisitive and asking about the planets, wants to know where China and Japan are located, and what animals live in each country! For the little boy, who no one had a guess how far he would come, my heart explodes....there are no more limits, only steady plugging away and david will learn everything!
Jacob is thriving in Pre-k. As a child who turns 5 in November, he could have gone to kindergarten, and I second guessed often this summer whether holding him back was the best choice, but he is truly thriving! His teachers are incredible, and he is gaining the self esteem and skills that will put him in an amazing place for kindergarten a year from now. His quick wit, and charming smile make him well loved by his teachers. he is making friendships and truly an invested partner in friendships with peers which is a new experience for me as a mom. He is invited on playdates, and wants to have friends over and it is truly a joy to experience these parts of parenthood.
As for matthew, the goal for school was for him to have a "SUPER SEPTEMBER". He had 2 rough days, but the rest of the month was amazing. His teacher is the same one he had in 1st and 2nd grade and she has only gotten better with experience. She is truly invested in Matthew having a successful school year.
Even this Friday, when Matthew struggled for over 2 hours, she kept pointing out that while he was spitting and cursing, he wasn't punching or hitting, and to her that was success! If you ask me that is looking at the cup more than half full! I am feeling more supported as a parent than I ever have and that counts for a lot as I continue to try to parent Matthew as he enters the world of puberty which leads to its own struggles and challenges.
This summer was horrendous for matthew. I wasnt sure we would survive it together and there were weeks that I had to do the unthinkable and begin to research residential programs for Matthew. In a nutshell, his summer school experience ended with mobile crisis being called two days in a row because he was so out of control. He had been fine both days going to school, but as we pulled into the school he became furious and was unable to be calmed back down. Each day after taking an extra clonodine and over an hour of a tantrum, he was able to settle. It is heartwrenching to see your child in agony like this. To know his brain is being tortured and there is nothing you can do to help him. It was horrendous to watch and to be a part of, and exhausting two days in a row.
matthew ended the summer at an amazing summer camp for children with special needs. I was worried about sending him, but also knew the boys and I needed the break, and that most likely Matthew would do well at camp. For Matthew, if he isn't comfortable with you, it is highly unlikely that you will see him struggle. I knew in 7 days of camp there was no way he would become comfortable, and he would be so busy, so I sent him with the hope that he would be successful.
He not only was successful, but he thrived at camp- it was a group of 10 children, all with special needs. 5 boys, and 5 girls and a wonderful staff! My hope is that they will have found enough success with this program to offer it again next summer and that eventually David and Matthew will both have the opportunity to experience a jewish summer camp.
The school year has started relatively well. David has grown in so many ways- I have not caught up to where he is and how capable he has become. My brother purchased an IPAD for David over the summer and it has been life altering. David has never been able to use a mouse, so in this age of technology he has been deprived all of the computer games that are part of life for children. Well, less than a day after getting the IPAD David was making up for lost time. It is so wonderful to see him playing games, doing puzzles, and entertaining himself and totally happy.
Largely in part to the reading APPS, and amazing teachers, and I think he was just ready, David is now reading! I never thought I would see the day that he would read! david loves books, given a chance, he sleeps with books, so to see him have the pleasure of reading makes my heart absolutely burst!
Last week David was given his first spelling assignment. I have to admit, I went into a cold sweat.....what was the teacher thinking? David can hardly write his name and this is after years of trying and practice. How was he going to do spelling? Was this a mistake? An error? a cruel joke? No, it was our new reality because David was ready! He got 4 out of 5 words correct, and the word he got wrong was "or" which he spelled "ro", so that was pretty close! He and I are doing Math homework each week now, practicing spelling, and he is inquisitive and asking about the planets, wants to know where China and Japan are located, and what animals live in each country! For the little boy, who no one had a guess how far he would come, my heart explodes....there are no more limits, only steady plugging away and david will learn everything!
Jacob is thriving in Pre-k. As a child who turns 5 in November, he could have gone to kindergarten, and I second guessed often this summer whether holding him back was the best choice, but he is truly thriving! His teachers are incredible, and he is gaining the self esteem and skills that will put him in an amazing place for kindergarten a year from now. His quick wit, and charming smile make him well loved by his teachers. he is making friendships and truly an invested partner in friendships with peers which is a new experience for me as a mom. He is invited on playdates, and wants to have friends over and it is truly a joy to experience these parts of parenthood.
As for matthew, the goal for school was for him to have a "SUPER SEPTEMBER". He had 2 rough days, but the rest of the month was amazing. His teacher is the same one he had in 1st and 2nd grade and she has only gotten better with experience. She is truly invested in Matthew having a successful school year.
Even this Friday, when Matthew struggled for over 2 hours, she kept pointing out that while he was spitting and cursing, he wasn't punching or hitting, and to her that was success! If you ask me that is looking at the cup more than half full! I am feeling more supported as a parent than I ever have and that counts for a lot as I continue to try to parent Matthew as he enters the world of puberty which leads to its own struggles and challenges.
Saturday, July 30, 2011
matthew update
Matthew has been in 4 winds again for the last 2.5 weeks, and there has been a lot of learning on my part, information gathering, and a need to face the realities of life no matther how harsh they may be.
I am thankful for a very strong, encouraging team at 4 Winds who, while at times it has been challenging, have helped me to understand the reality that goes along with parenting a child like matthew. Essentially, matthew is a child with brain damage-it is unclear how much damage was done, but the alcohol use while he was in utero has caused clear brain damage mostly to his frontal lobe, otherwise known as the area of the brain that is in charge of making important decisions. The frontal lobe controls all of your executive funtions- essentially Matthew now needs someone to be his frontal lobe to help him make smart decisions, to keep him safe, to supervise him at all times, as he is unable to do these things on his own.
In addition to the fetal alcohol syndrome, Matthew is also struggling with mental illness, most likely bipolar disorder. His moods change constantly- he can go from happy as can be, to a state of anger that is intense. He can go from motivated, to totally lethargic in less than 20 minutes.
At the hospital they have 20 staff with 15 children, in addition to social workers, psychiatrists and nurses. They have quiet spaces that children can go to if a break is needed. They have people who can help children 1:1 or even sometimes 3 adults for 1 child if that kind of support is needed- Matthew has needed this support multiple times in the hospital.
Many people in my world thought I was nuts to adopt 1 child on my own. Most people in my world really thought I was crazy when I adopted 2 children, then when those 2 children had identified special needs requiring intense services and I went ahead and adopted child number 3, anyone who thought I was sane, jumped on the "she's crazy" bandwagon. It is because I am strong willed, and a little crazy that I went after forming the family of my dreams even without a partner. It is because I knew what I wanted, and was bound to make my dream come true, with or without the support of another adult, that at times has led to some of my current struggles.
i am not great about asking for help. I like to believe I can do it all myself, and if I can't do it all myself I spend hours and days believing I am a failure. I am working hard to realize that I can't do this all myself. As a gift to my son, I have to realize that we need help. He needs help, and it is more help than I alone can provide.
Every 2 or 3 days in the hospital, Matthew has needed not only intense adult support but also medical intervention to bring him down and to stop his rages. Given this, the hospital is concerned that we need support at home. There is only so long that Matthew can be in the hospital, and that time is coming to an end. Sadly, brain damage cannot be repaired by medication, it cannot be repaired by behavior modification, and it cannot be repaired by any other methods that are treatable in a hospital setting. As a double whammy, many children with fetal alcohol syndrome also do not respond well to medication- Matthew, fits into this category and has had reactions to most of the medications that have been tried.
So now it is time for me to plan for my son to return home. I am putting alot of energy into making his return home as successful as possible. There will be posters in our house that remind matthew of the rules, we will try to live our lives more focused on routine and structure so that Matthew is as happy and comfortable as possible. In addition, I need a group of people who I can lean on. I need to ask for help, and that is the hardest thing for me to do.
I need help when Matthew is upset. Even when Matthew is calm,it is suggested that we have help in our house as many evenings as possible so that there is an extra adult to support and help Matthew through the rough spots that come with life.
I need people who can play catch with matthew, focus just on Matthew and spend time helping Matthew's life be a little more calm, so that the things that I have to do in life, such as grocery shopping, going to the store, and taking the other 2 boys on playdates, do not overwhelm matthew. I need essentialy to form "team Matthew". A group of people who can help me to create a life that helps Matthew function the best he can, that limits his outbursts, and focuses on helping him to succeed. I need to be the cheerleader and organizer for team Matthew. To focus on meeting him where he is in life, and keeping life calmer so that he does not escalate rather than plannig for how to deescalate him once he becomes upest.
I have 4 more days to figure out how to change our family and our lives so that we are ready for Matthew when he comes home. If you know of any child care providers, or education students who may want to join "TEAM matthew" please pass along their names.
I have worked hard in these 2 weeks to accept that family life may now have to include other people, it is not what I want, but I will always do what my son needs. here is to hoping and praying that Team Matthew buys us some days of peace and happiness! Here is to hoping that Matthew comes home as calm as possible!
I am thankful for a very strong, encouraging team at 4 Winds who, while at times it has been challenging, have helped me to understand the reality that goes along with parenting a child like matthew. Essentially, matthew is a child with brain damage-it is unclear how much damage was done, but the alcohol use while he was in utero has caused clear brain damage mostly to his frontal lobe, otherwise known as the area of the brain that is in charge of making important decisions. The frontal lobe controls all of your executive funtions- essentially Matthew now needs someone to be his frontal lobe to help him make smart decisions, to keep him safe, to supervise him at all times, as he is unable to do these things on his own.
In addition to the fetal alcohol syndrome, Matthew is also struggling with mental illness, most likely bipolar disorder. His moods change constantly- he can go from happy as can be, to a state of anger that is intense. He can go from motivated, to totally lethargic in less than 20 minutes.
At the hospital they have 20 staff with 15 children, in addition to social workers, psychiatrists and nurses. They have quiet spaces that children can go to if a break is needed. They have people who can help children 1:1 or even sometimes 3 adults for 1 child if that kind of support is needed- Matthew has needed this support multiple times in the hospital.
Many people in my world thought I was nuts to adopt 1 child on my own. Most people in my world really thought I was crazy when I adopted 2 children, then when those 2 children had identified special needs requiring intense services and I went ahead and adopted child number 3, anyone who thought I was sane, jumped on the "she's crazy" bandwagon. It is because I am strong willed, and a little crazy that I went after forming the family of my dreams even without a partner. It is because I knew what I wanted, and was bound to make my dream come true, with or without the support of another adult, that at times has led to some of my current struggles.
i am not great about asking for help. I like to believe I can do it all myself, and if I can't do it all myself I spend hours and days believing I am a failure. I am working hard to realize that I can't do this all myself. As a gift to my son, I have to realize that we need help. He needs help, and it is more help than I alone can provide.
Every 2 or 3 days in the hospital, Matthew has needed not only intense adult support but also medical intervention to bring him down and to stop his rages. Given this, the hospital is concerned that we need support at home. There is only so long that Matthew can be in the hospital, and that time is coming to an end. Sadly, brain damage cannot be repaired by medication, it cannot be repaired by behavior modification, and it cannot be repaired by any other methods that are treatable in a hospital setting. As a double whammy, many children with fetal alcohol syndrome also do not respond well to medication- Matthew, fits into this category and has had reactions to most of the medications that have been tried.
So now it is time for me to plan for my son to return home. I am putting alot of energy into making his return home as successful as possible. There will be posters in our house that remind matthew of the rules, we will try to live our lives more focused on routine and structure so that Matthew is as happy and comfortable as possible. In addition, I need a group of people who I can lean on. I need to ask for help, and that is the hardest thing for me to do.
I need help when Matthew is upset. Even when Matthew is calm,it is suggested that we have help in our house as many evenings as possible so that there is an extra adult to support and help Matthew through the rough spots that come with life.
I need people who can play catch with matthew, focus just on Matthew and spend time helping Matthew's life be a little more calm, so that the things that I have to do in life, such as grocery shopping, going to the store, and taking the other 2 boys on playdates, do not overwhelm matthew. I need essentialy to form "team Matthew". A group of people who can help me to create a life that helps Matthew function the best he can, that limits his outbursts, and focuses on helping him to succeed. I need to be the cheerleader and organizer for team Matthew. To focus on meeting him where he is in life, and keeping life calmer so that he does not escalate rather than plannig for how to deescalate him once he becomes upest.
I have 4 more days to figure out how to change our family and our lives so that we are ready for Matthew when he comes home. If you know of any child care providers, or education students who may want to join "TEAM matthew" please pass along their names.
I have worked hard in these 2 weeks to accept that family life may now have to include other people, it is not what I want, but I will always do what my son needs. here is to hoping and praying that Team Matthew buys us some days of peace and happiness! Here is to hoping that Matthew comes home as calm as possible!
Wednesday, July 13, 2011
all I want is accurate, honest communication from school
When I am at work I try really hard to focus on work. I know that my boys are typically safe, and that what happens at school needs to be dealt with at school. I am not as successful at compartmentalizing life as I would like to be, but then again, these are after all MY boys, and so like all good parents, I worry about them.
Summer school just started, a measly week and 1 day ago, and yet it seems like there is more confusion and messed up communication then I have ever dealt with. I know, and I try to remind myself, that there are at least 3 sides to all stories, mine, theirs and our shared reality, and I also know that everyday is just a little blip in each boys life, however all that said, I need communication to be accurate and honest and reflective of reality.
matthew had a good first day of summer school, a decent second day and since then, on his teachers rating scale he has had days rated as 2 or 3. Essentially a "2" day means that there was a large outburst, a "3" day means that there was not a large outburst, but that matthew was unsettled and on edge all day. We decided together, the teacher and I, that a "4" day was a good matthew day, and a "5" was outstanding, and a day where he got a "1" would be a day I would be asked to come to school as the problem was huge.
Why is it, given this scale, that on Monday when he had an outburst that led to the entire class being removed from the room, and 3 adults helping Matthew calm down, that I was told by the Social worker on Tuesday that this week he had 2 good days? Why was it that thsi is what the social worker said, when the note, DIRECTLY FROM THE TEACHER, said that Tuesday was a "3" day?
Why was it also that today when I spoke to the director of summer school, I was told that he had a good day today, but the teacher wrote that today was a "3" and Matthew was "far more elevated here than he was during the school year."
When I asked about these differences, I was told that "Monday was a good day AFTER the outburst, so it was a good day". If in a 3 hour program, you outburst for an hour, in what program is that considered a good day?
I have to deal in realities. I have to make decisions about my son, and I can only make decisions when I am given concrete facts to base my decisions on.
In similar news, the babysitter was told by the bus aide on Friday and Tuesday that David had a rough bus ride, and Matthew reported that Friday the bus was pulled over to calm David down. However, when I asked about this, I was told that he had a rough few minutes on Tuesday, but everything was find on Friday. Why was the bus pulled over? is David having seizures on the bus? Is he worried, what is upsetting him? David cannot communicate enough when he is upset to tell someone what is wrong. He uses behaviors to ensure that an adult helps him and supports him. Once you calm down the behavior, with help David can tell you what is wrong. As David's mom I am worried if he is struggling on the bus. I have to know what is going on so I can fix it. However, if I can't find out what happened, I can't talk to David and we can't problem solve for a solution.
I know this is only a 6 week program. I know that this program won't make or break anything for either of my boys, but I do need to know what is going on, and if they are ok, so that I can make appropriate decisions and without facts I can't do that.
Summer school just started, a measly week and 1 day ago, and yet it seems like there is more confusion and messed up communication then I have ever dealt with. I know, and I try to remind myself, that there are at least 3 sides to all stories, mine, theirs and our shared reality, and I also know that everyday is just a little blip in each boys life, however all that said, I need communication to be accurate and honest and reflective of reality.
matthew had a good first day of summer school, a decent second day and since then, on his teachers rating scale he has had days rated as 2 or 3. Essentially a "2" day means that there was a large outburst, a "3" day means that there was not a large outburst, but that matthew was unsettled and on edge all day. We decided together, the teacher and I, that a "4" day was a good matthew day, and a "5" was outstanding, and a day where he got a "1" would be a day I would be asked to come to school as the problem was huge.
Why is it, given this scale, that on Monday when he had an outburst that led to the entire class being removed from the room, and 3 adults helping Matthew calm down, that I was told by the Social worker on Tuesday that this week he had 2 good days? Why was it that thsi is what the social worker said, when the note, DIRECTLY FROM THE TEACHER, said that Tuesday was a "3" day?
Why was it also that today when I spoke to the director of summer school, I was told that he had a good day today, but the teacher wrote that today was a "3" and Matthew was "far more elevated here than he was during the school year."
When I asked about these differences, I was told that "Monday was a good day AFTER the outburst, so it was a good day". If in a 3 hour program, you outburst for an hour, in what program is that considered a good day?
I have to deal in realities. I have to make decisions about my son, and I can only make decisions when I am given concrete facts to base my decisions on.
In similar news, the babysitter was told by the bus aide on Friday and Tuesday that David had a rough bus ride, and Matthew reported that Friday the bus was pulled over to calm David down. However, when I asked about this, I was told that he had a rough few minutes on Tuesday, but everything was find on Friday. Why was the bus pulled over? is David having seizures on the bus? Is he worried, what is upsetting him? David cannot communicate enough when he is upset to tell someone what is wrong. He uses behaviors to ensure that an adult helps him and supports him. Once you calm down the behavior, with help David can tell you what is wrong. As David's mom I am worried if he is struggling on the bus. I have to know what is going on so I can fix it. However, if I can't find out what happened, I can't talk to David and we can't problem solve for a solution.
I know this is only a 6 week program. I know that this program won't make or break anything for either of my boys, but I do need to know what is going on, and if they are ok, so that I can make appropriate decisions and without facts I can't do that.
Saturday, July 9, 2011
in need of everyone's help
As an educator, I often do workshops and trainings for other teachers. Since becoming a mom of 2 children with special needs, a majority of my trainings now focus on including children with special needs in child care settings, and creating successful opportunities for children with special needs. I find these workshops to be very rewarding, and if they make a difference for even one child, then it is totally worth it!
Way back before children, I was asked to do a workshop titled, Working with children with challenging behaviors. Back then, I could not even have dreamed of some of the challenges I would be faced with as a mom, but I did a lot of research to prepare for the workshop, and over the years I have presented this workshop at least 20 times.
As I prepared for this workshop, one of the things I read has always stayed with me. I couldnt tell you the source anymore, but I can visualize the page, and think of the text often. What was written was the following:
"For a child with challenging behaviors, if their behavior allows them, even just once, to get away with something, or allows them to avoid doing something they are asked, then they will continue with the negative behavior with the hope that it will again get them what they want."
This is probably the most true statement I have ever read in regards to Matthew. If getting loud and out of control will help him to get what he wants, he will get loud and out of control. If he sees anyone who will help him to get what he wants, he will seek out attention from that person as a way to get his need met.
Please, don't misunderstand. I do not think that Matthew is coniving on purpose, but I do believe that often for Matthew his need to get what he wants, outweighs his need to do what is right. He has a nack for reading people, and quickly can work any crowd.
If I have said no more food, he will find someone who will give him food.
If I have said it is time to go, he will find a way to strike up a conversation with someone so he can stay a little longer.
For every person who "helps" by giving matthew what he wants so as to avoid a tantrum, it is just one more time that I have work that much harder to prove to Matthew that what I say is the rule.
For Matthew to learn anything, it truly has to be taught at least 100 times. However, if I have stuck to a rule 99 times, and just 1 time matthew finds a way around the rule, or is offered a bribe for better behavior, I essentially have to start with that rule again, and do it another 100 times.
Like everyone else, I would love to avoid Matthew's tantrums. Like everyone else, I would love to give Matthew all the treats and treasures of childhood. However, in my hopes to help Matthew understand rules, to be healthy and to gain the skills he will need as he grows older, I have to prioritize and handle the tantrums now, with the hope that they will become less as he gets older because he will have learned to respect the boundaries that are set.
Please remember, as a child with special needs, Matthew does not learn the rules of interacting with people like other children do. While it is funny that at the age of 10 Matthew goes up to strangers and asks for a taste of their ice cream, at the age of 20, it will not be cute, it will not be funny, and I may not be there to help him understand why this is inappropriate!
It takes a village to raise any child, it takes a village especially to raise a child with special needs!
Way back before children, I was asked to do a workshop titled, Working with children with challenging behaviors. Back then, I could not even have dreamed of some of the challenges I would be faced with as a mom, but I did a lot of research to prepare for the workshop, and over the years I have presented this workshop at least 20 times.
As I prepared for this workshop, one of the things I read has always stayed with me. I couldnt tell you the source anymore, but I can visualize the page, and think of the text often. What was written was the following:
"For a child with challenging behaviors, if their behavior allows them, even just once, to get away with something, or allows them to avoid doing something they are asked, then they will continue with the negative behavior with the hope that it will again get them what they want."
This is probably the most true statement I have ever read in regards to Matthew. If getting loud and out of control will help him to get what he wants, he will get loud and out of control. If he sees anyone who will help him to get what he wants, he will seek out attention from that person as a way to get his need met.
Please, don't misunderstand. I do not think that Matthew is coniving on purpose, but I do believe that often for Matthew his need to get what he wants, outweighs his need to do what is right. He has a nack for reading people, and quickly can work any crowd.
If I have said no more food, he will find someone who will give him food.
If I have said it is time to go, he will find a way to strike up a conversation with someone so he can stay a little longer.
For every person who "helps" by giving matthew what he wants so as to avoid a tantrum, it is just one more time that I have work that much harder to prove to Matthew that what I say is the rule.
For Matthew to learn anything, it truly has to be taught at least 100 times. However, if I have stuck to a rule 99 times, and just 1 time matthew finds a way around the rule, or is offered a bribe for better behavior, I essentially have to start with that rule again, and do it another 100 times.
Like everyone else, I would love to avoid Matthew's tantrums. Like everyone else, I would love to give Matthew all the treats and treasures of childhood. However, in my hopes to help Matthew understand rules, to be healthy and to gain the skills he will need as he grows older, I have to prioritize and handle the tantrums now, with the hope that they will become less as he gets older because he will have learned to respect the boundaries that are set.
Please remember, as a child with special needs, Matthew does not learn the rules of interacting with people like other children do. While it is funny that at the age of 10 Matthew goes up to strangers and asks for a taste of their ice cream, at the age of 20, it will not be cute, it will not be funny, and I may not be there to help him understand why this is inappropriate!
It takes a village to raise any child, it takes a village especially to raise a child with special needs!
Sunday, June 26, 2011
a good day
A good day can have so many aspects to it......to each person and family it will be a little different. For us, today was a good day.
Today, we played a game as a family for 30 minutes! That is often something that I dream of and today we made it happen!
Today the boys watched a movie together for 25 minutes and they were able to be pretty independent and enjoy their time as brothers.
Today David and Jacob laughed and played in the playroom- they pretended they were running a restaurant, and each boy had a role- jacob was in charge of the money and David was in charge of cooking
Today we spent time at the library and we each left with books to read.
The boys have been asking me why my skin is white and their skin is brown- it has been a question that they are each asking, and that they have each asked repeatedly. I am not sure what kind of answer they are each in need of, but the typical answers I have tried:
- all of us are different and being different makes us special
- I love your skin, it is so beautiful
- and pointing out other people we know who have different skin colors has not helped put an end to the questions, so I decided I needed to find a book to read to them so we scoured the library for an appropriate book.
We spent 30 minutes tonight reading these books, talking about the books, and sharing our thoughts. Matthew listened to both books with lots of interest. Taking in the information, and chewing on all of it. Jacob, in true Jacob style, listened and moved and danced through the entire second book- while he is the one asking the most questions, I am not sure he knows what answers he is looking for, so he did his best to bring levity to the topic. David, loves all books and seemed to enjoy both books, but said very little.
We will read more books as we continue to chew on the issue of skin color and race and what makes our family. And I will hope that each time we read, we will spend the quality time that we spent together tonight!
Today was full of the boys loving each other, being happy together and me enjoying life as a mom. For every single one of these days, it makes the days of challenges that much easier to cope with. and for all of the days of struggles, it makes each of these happy days just that much more special.
Today, we played a game as a family for 30 minutes! That is often something that I dream of and today we made it happen!
Today the boys watched a movie together for 25 minutes and they were able to be pretty independent and enjoy their time as brothers.
Today David and Jacob laughed and played in the playroom- they pretended they were running a restaurant, and each boy had a role- jacob was in charge of the money and David was in charge of cooking
Today we spent time at the library and we each left with books to read.
The boys have been asking me why my skin is white and their skin is brown- it has been a question that they are each asking, and that they have each asked repeatedly. I am not sure what kind of answer they are each in need of, but the typical answers I have tried:
- all of us are different and being different makes us special
- I love your skin, it is so beautiful
- and pointing out other people we know who have different skin colors has not helped put an end to the questions, so I decided I needed to find a book to read to them so we scoured the library for an appropriate book.
We spent 30 minutes tonight reading these books, talking about the books, and sharing our thoughts. Matthew listened to both books with lots of interest. Taking in the information, and chewing on all of it. Jacob, in true Jacob style, listened and moved and danced through the entire second book- while he is the one asking the most questions, I am not sure he knows what answers he is looking for, so he did his best to bring levity to the topic. David, loves all books and seemed to enjoy both books, but said very little.
We will read more books as we continue to chew on the issue of skin color and race and what makes our family. And I will hope that each time we read, we will spend the quality time that we spent together tonight!
Today was full of the boys loving each other, being happy together and me enjoying life as a mom. For every single one of these days, it makes the days of challenges that much easier to cope with. and for all of the days of struggles, it makes each of these happy days just that much more special.
Monday, June 20, 2011
It isnt a permanent solution......
See until you have lived a week in my family, I don't think it is fair for anyone to judge. Unfortunately, as people try to help and be supportive sometimes what is said repeats over and over and over in my head. Sadly, the things that repeat are never the positive comments, they are the ones that lead to questions. The comments that have me questioning myself constantly.
To catch you up, we have not had a very smooth last few weeks. When Matthew is doing well at school he is struggling at home, and when life at home is great, I am getting calls from the principal, so essentially it seems like Matthew can keep his behavior under control in only one part of his life at a time.
This weekend, we suffered through 6 intense outbursts. The first one was bright and early Saturday morning. The rule at our house is you need to stay upstairs until mom is out of bed. matthew and I had a deal that if he stayed upstairs, and out of the food until I got out of bed, then he could buy lunch on Tuesday at school. Part 2 to the rule is that I can be woken at any time. I don't care if it is 4 AM, if he wants to go downstairs, he is welcome to wake me up.
When I got out of bed Saturday morning at 7, and Matthew was downstairs I knew it was likely that there was a problem. Sadly, I didnt expect the problem to be that he had eaten an entire box of ritz crackers. When I reminded him that this meant he would not be buying lunch at school, he exploded for over 30 minutes with a tirade of threats and curses that would put the average sailor to shame.
We then continued on with our day with some pretty good success until the afternoon when we went to the pool. Some friends of ours went to the snack bar and Matthew asked a few minutes later if he could go to the diving board area. I said yes, and didnt give it too much thought. Then I looked over and saw him hovering over my friend's shoulder drooling over the fries. That didnt really bother me too much, sure it isn't polite, but it isn't that unusual for a 9 year old to drool over fries. However, what I saw next was unsettling- Matthew was picking up fries from the ground and eating them. I hate that he needs/wants food this badly. I hate that he doesnt understand that socially this is not ok behavior.
I called him over to me to tell him that he could not eat off the ground and that now he would need to stay with me at the pool, and we were again into a massive explosion. he was cursing and hitting things, and so I told him he would need to stop or we would leave the pool. Even with support he couldn't stop, and so we left the pool with him screaming, and pulling at me and cursing.
Meltdown number 3 happened as we were celebrating Father's day with my dad. I thought it would be fun to take the boys and my dad to a Valleycats baseball game. We were doing pretty well, and then it was time for the entertainment between innings. The valleycat mascot was driving a little car around the field and throwing t-shirts, and I encouraged matthew to go try to catch one. After they were all done, and I called him back to our seats, I noticed he was eating popcorn. He had asked a perfect stranger for some of their popcorn, and they said yes....now question number 1 is, what stranger says YES? question number 2 is, what child thinks this is appropriate?
Sadly, because I felt like Matthew HAS to learn these rules, I told matthew that his behavior was unacceptable and I told him I would not be purchasing him a snack at the game- now before you feel like I overreacted, you should know, he already had a hotdog, fries and some kettle corn at the game, so it isn't like he was being deprived. Unfortunately, there was no way for Matthew to understand this, and what ensued was 45 minutes of screaming and yelling and out of control behavior.
So basically, you can imagine the other 3 outbursts- essentially Matthew wanted something, i said no, and he exploded.......
at work today one of my co workers asked how Matthew was doing. I said, things were up and down and that I had called the hospital again to see if it was possible there was a bed available. I cannot live with him being aggressive. He is not safe when he is being aggressive, I am not able to parent him, and it is unfair for the other 2 boys to live like this. My best hope at this time is that the doctors at the hospital can find a medication for him that works. The hospital is the best opportunity for this to happen because they can keep matthew safe while they do this, and they can observe him 24/7 and make medication adjustments.
My coworkers response to me saying I was in touch with the hospital was "that is not a permanent solution". Of course that isn't a permanent solution. At this point i don't know that there is a permanent solution. In the best of al worlds we find a medication that helps Matthew control his emotions and behaviors and we live a normal family life.
However, I also cannot put my other boys or myself through living like this- it is the worst thing ever to see a 4 year old afraid in his own home. I don't know what the solution is. there is not guidebook that tells me. All I know for now, is that my hope is on finding a medication that helps Matthew so that we can go back to being a family that lives in peace. Where I can say no, and he can cope with that. Where I can go to sleep and wake up knowing that he has stayed asleep all night, and he is making good choices.
if anyone knows of a permanent solution, I am always ready to listen....but until then, I hate that I again have doubts, that I again don't feel secure and that again we are living life constantly one small step away from an outburst.
To catch you up, we have not had a very smooth last few weeks. When Matthew is doing well at school he is struggling at home, and when life at home is great, I am getting calls from the principal, so essentially it seems like Matthew can keep his behavior under control in only one part of his life at a time.
This weekend, we suffered through 6 intense outbursts. The first one was bright and early Saturday morning. The rule at our house is you need to stay upstairs until mom is out of bed. matthew and I had a deal that if he stayed upstairs, and out of the food until I got out of bed, then he could buy lunch on Tuesday at school. Part 2 to the rule is that I can be woken at any time. I don't care if it is 4 AM, if he wants to go downstairs, he is welcome to wake me up.
When I got out of bed Saturday morning at 7, and Matthew was downstairs I knew it was likely that there was a problem. Sadly, I didnt expect the problem to be that he had eaten an entire box of ritz crackers. When I reminded him that this meant he would not be buying lunch at school, he exploded for over 30 minutes with a tirade of threats and curses that would put the average sailor to shame.
We then continued on with our day with some pretty good success until the afternoon when we went to the pool. Some friends of ours went to the snack bar and Matthew asked a few minutes later if he could go to the diving board area. I said yes, and didnt give it too much thought. Then I looked over and saw him hovering over my friend's shoulder drooling over the fries. That didnt really bother me too much, sure it isn't polite, but it isn't that unusual for a 9 year old to drool over fries. However, what I saw next was unsettling- Matthew was picking up fries from the ground and eating them. I hate that he needs/wants food this badly. I hate that he doesnt understand that socially this is not ok behavior.
I called him over to me to tell him that he could not eat off the ground and that now he would need to stay with me at the pool, and we were again into a massive explosion. he was cursing and hitting things, and so I told him he would need to stop or we would leave the pool. Even with support he couldn't stop, and so we left the pool with him screaming, and pulling at me and cursing.
Meltdown number 3 happened as we were celebrating Father's day with my dad. I thought it would be fun to take the boys and my dad to a Valleycats baseball game. We were doing pretty well, and then it was time for the entertainment between innings. The valleycat mascot was driving a little car around the field and throwing t-shirts, and I encouraged matthew to go try to catch one. After they were all done, and I called him back to our seats, I noticed he was eating popcorn. He had asked a perfect stranger for some of their popcorn, and they said yes....now question number 1 is, what stranger says YES? question number 2 is, what child thinks this is appropriate?
Sadly, because I felt like Matthew HAS to learn these rules, I told matthew that his behavior was unacceptable and I told him I would not be purchasing him a snack at the game- now before you feel like I overreacted, you should know, he already had a hotdog, fries and some kettle corn at the game, so it isn't like he was being deprived. Unfortunately, there was no way for Matthew to understand this, and what ensued was 45 minutes of screaming and yelling and out of control behavior.
So basically, you can imagine the other 3 outbursts- essentially Matthew wanted something, i said no, and he exploded.......
at work today one of my co workers asked how Matthew was doing. I said, things were up and down and that I had called the hospital again to see if it was possible there was a bed available. I cannot live with him being aggressive. He is not safe when he is being aggressive, I am not able to parent him, and it is unfair for the other 2 boys to live like this. My best hope at this time is that the doctors at the hospital can find a medication for him that works. The hospital is the best opportunity for this to happen because they can keep matthew safe while they do this, and they can observe him 24/7 and make medication adjustments.
My coworkers response to me saying I was in touch with the hospital was "that is not a permanent solution". Of course that isn't a permanent solution. At this point i don't know that there is a permanent solution. In the best of al worlds we find a medication that helps Matthew control his emotions and behaviors and we live a normal family life.
However, I also cannot put my other boys or myself through living like this- it is the worst thing ever to see a 4 year old afraid in his own home. I don't know what the solution is. there is not guidebook that tells me. All I know for now, is that my hope is on finding a medication that helps Matthew so that we can go back to being a family that lives in peace. Where I can say no, and he can cope with that. Where I can go to sleep and wake up knowing that he has stayed asleep all night, and he is making good choices.
if anyone knows of a permanent solution, I am always ready to listen....but until then, I hate that I again have doubts, that I again don't feel secure and that again we are living life constantly one small step away from an outburst.
Thursday, May 26, 2011
Jacob's evaluation
As if there wasn't enough going on in our lives right now with Matthew just recently coming home from 4 Winds, jacob had a full psychological evaluation and OT eval on Monday. Jacob will be 5 on November 1, and is eligible in NYS to go to Kindergarten. I cannot quite put my finger on why I don't think he should go, besides that fact that he would be a really young kindergartener, but I just don't feel like he is ready. In an effort to gather information and to just make sure he was on target developmentally, I asked our school district for a developmental assessment of Jacob.
He has had speech therapy for over 2 years now and is still not speaking clearly and has trouble conveying his thoughts. While I know he is very social and does well with friends, he has shown no interest in preacademic skills and struggles with basic shape drawing, and letter recognition. He has only very recently become interested in the letter J for Jacob, and still does not consistenly recognize it as the first letter of his name.
I thought for sure that the eval would not show anything, but I figured it would be a great way to just rule out any problems. Thankfully, Jacob scored an 89 cognitively, so he is on target in that aspect, but sadly he scored a 73 in fine motor skills. Essentially, 85-115 is a solid score, on most standardized tests with an average being 100, so cognitely Jacob was on the low average side, but as long as he can be described as any sort of average I am THRILLED.
However, his score of 73 in OT skills, puts him in the 3rd percentile of all children his age. This means that he performs better than only 3 percent of all children his age in fine motor skills. He does not yet have a dominant hand, he could not draw a person without a lot of prompting, and he could not cut out a line. He could not trace a line on a piece of paper, and had trouble making a cross with an example to look at.
However, he was one hell of a bead stringer- stringing a whole string full of beads, and he throws a ball like a champ! So, basically if he was in a bead stringing competition, watch out world, and as long as he only had to throw and not catch he is A-OK!
As part of the evaluation, the occupational therapist evaluated Jacob's Gross Motor skills as well- he cannot jump or hop, but he can ride a 2 wheeler! he has trouble alternating feet on the stairs, but can kick a ball.
Jacob is playing soccer with a group of other children who are all going to kindergarten. He is the only child who is having trouble separating from his mom, I know not completely unusual, but still a concern. he is struggling with dribbling the ball, again not a horrible thing, but he should be gaining skills at a similar pace to the rest of the team, and is not on par with them at this point. He is a very young little guy still. If he goes to kindergarten, many of his peers will have a full year on him age wise and therfore skillwise.
however, if he doesnt go to kindergarten, now there will be at least 2 if not 3 therapies that he will qualify for that we will need to fit into his schedule. Sure, the district is obligated to provide him with OT, PT and speech, but they are only obligated to provide these to him at the local elementary school. Is it really realistic for me to think that I, a single mom, can drive him to and from these services every week? Is there any chance that the district will take pity on me and just provide the services to him at Nursery School? is there any chance in the world that eh will have a major growth spurt and suddenly gain these skills at an alarming rate?
Once again more questions.....few answers.....and sadly child number 3 with a need for additional support.
He has had speech therapy for over 2 years now and is still not speaking clearly and has trouble conveying his thoughts. While I know he is very social and does well with friends, he has shown no interest in preacademic skills and struggles with basic shape drawing, and letter recognition. He has only very recently become interested in the letter J for Jacob, and still does not consistenly recognize it as the first letter of his name.
I thought for sure that the eval would not show anything, but I figured it would be a great way to just rule out any problems. Thankfully, Jacob scored an 89 cognitively, so he is on target in that aspect, but sadly he scored a 73 in fine motor skills. Essentially, 85-115 is a solid score, on most standardized tests with an average being 100, so cognitely Jacob was on the low average side, but as long as he can be described as any sort of average I am THRILLED.
However, his score of 73 in OT skills, puts him in the 3rd percentile of all children his age. This means that he performs better than only 3 percent of all children his age in fine motor skills. He does not yet have a dominant hand, he could not draw a person without a lot of prompting, and he could not cut out a line. He could not trace a line on a piece of paper, and had trouble making a cross with an example to look at.
However, he was one hell of a bead stringer- stringing a whole string full of beads, and he throws a ball like a champ! So, basically if he was in a bead stringing competition, watch out world, and as long as he only had to throw and not catch he is A-OK!
As part of the evaluation, the occupational therapist evaluated Jacob's Gross Motor skills as well- he cannot jump or hop, but he can ride a 2 wheeler! he has trouble alternating feet on the stairs, but can kick a ball.
Jacob is playing soccer with a group of other children who are all going to kindergarten. He is the only child who is having trouble separating from his mom, I know not completely unusual, but still a concern. he is struggling with dribbling the ball, again not a horrible thing, but he should be gaining skills at a similar pace to the rest of the team, and is not on par with them at this point. He is a very young little guy still. If he goes to kindergarten, many of his peers will have a full year on him age wise and therfore skillwise.
however, if he doesnt go to kindergarten, now there will be at least 2 if not 3 therapies that he will qualify for that we will need to fit into his schedule. Sure, the district is obligated to provide him with OT, PT and speech, but they are only obligated to provide these to him at the local elementary school. Is it really realistic for me to think that I, a single mom, can drive him to and from these services every week? Is there any chance that the district will take pity on me and just provide the services to him at Nursery School? is there any chance in the world that eh will have a major growth spurt and suddenly gain these skills at an alarming rate?
Once again more questions.....few answers.....and sadly child number 3 with a need for additional support.
Wednesday, May 11, 2011
I will trust my gut. I am the mom to 3 amazing boys and my gut instincts are strong
Matthew has been wetting his bed for 5 LONG months. For 5 long months I have told his Psychiatrist there is a problem. SOmething is wrong with my son. For 5 long months she said, he is fine. Do not worry. This week he stopped taking his lithium. Within 5 days, the bed wetting stopped. We lived 5 horrendous months because I didnt insist that he be taken off of Lithium.
I will not make that mistake again.
Matthew was crying and crying and crying at 4 Winds. They had taken him off of Zoloft and he was having withdrawal. They said he missed his mommy. I said, something is very, very wrong. I knew something was wrong on Friday. On the following Monday the doctors decided something was wrong. By then, he could not walk. He could not hold a pencil. His body was atoxic and things were very wrong. I should have insisted that they restart the zoloft and take him off of the Depakote. He suffered for 3 long days because I did not insist.
I will not make that mistake again.
David's behavior had changed. He was talking very, very fast. He was very, very impulsive. Something was wrong. He needed an increase in his ADHD medications. He is fine they said at school. He is fine everyone else said. I finally called the doctor to ask for an increase. David read his first book all by himself just days after the medication increased and he spent time in a typical 1st grade classroom. Without the medication increase he couldn't have done those things his teacher said. Without the increase his body was out of control. I waited too long to increase his medication. I listened to so many others while my boy was struggling.
I will not make that mistake again.
I know my boys. I love my boys. I need to learn to trust myself. I need to remember I know them more and better than anyone else on the planet. I need to trust my gut. They need me to be proactive. They need me to be a stronger mom.
I will stop listening to the world around me when my gut is telling me something is wrong.
I will trust my gut.
I will not make these mistakes again.
I will not make that mistake again.
Matthew was crying and crying and crying at 4 Winds. They had taken him off of Zoloft and he was having withdrawal. They said he missed his mommy. I said, something is very, very wrong. I knew something was wrong on Friday. On the following Monday the doctors decided something was wrong. By then, he could not walk. He could not hold a pencil. His body was atoxic and things were very wrong. I should have insisted that they restart the zoloft and take him off of the Depakote. He suffered for 3 long days because I did not insist.
I will not make that mistake again.
David's behavior had changed. He was talking very, very fast. He was very, very impulsive. Something was wrong. He needed an increase in his ADHD medications. He is fine they said at school. He is fine everyone else said. I finally called the doctor to ask for an increase. David read his first book all by himself just days after the medication increased and he spent time in a typical 1st grade classroom. Without the medication increase he couldn't have done those things his teacher said. Without the increase his body was out of control. I waited too long to increase his medication. I listened to so many others while my boy was struggling.
I will not make that mistake again.
I know my boys. I love my boys. I need to learn to trust myself. I need to remember I know them more and better than anyone else on the planet. I need to trust my gut. They need me to be proactive. They need me to be a stronger mom.
I will stop listening to the world around me when my gut is telling me something is wrong.
I will trust my gut.
I will not make these mistakes again.
4 winds update
Matthew has been at 4 winds for almost 2 weeks now and it has been an intense roller coaster ride. He went into 4 winds because he was manic and was really struggling at home. My hope was that he would have a medication adjustment and be home within a week and a half or so. Instead, it is looking like he will spend 2.5 -3 weeks there total. That is a long, long time in the life of a 9 year old.
When he got to 4 Winds he was quickly taken off of his Zoloft as that can create mood instability in some children with FAS and mood disorders. He was also taken of of his Lithium after a few days because his level was toxic and he was started on Depakote instead.
By the middle of the first week he was a wreck, an absolute mess. He was crying constantly, and so, so sad. I fought to have the staff restart his Zoloft and thankfully they did that. At the same time he had a horrible reaction to the Depakote- he became atoxic and struggled to walk,and do most motor activities.
It is heartwrenching to have your 9 year old going through so much emotionally, physically and to not be able to be with him. He could not understand what was going on, he felt horrendous and was not with his mommy. He was crying continuously and was so exhausted he was constantly falling asleep.
Once the doctors determined that he was having such a horrendous reaction to the Depakote he was taken off of the Depakote, but now in a short period of time his body has been through an awful lot of medcation changes. it is one thing if you are going on different antibiotics to solve an ear infection, but he was going on and off of different mood stabilizing medications. Talk about putting the human body through intense emotional reactions!
The only thing that I can hope is that through his time at 4 Winds we now have professionals who have spent a few weeks watching matthew 24/7. They have heard his questions all day long. They have watched him interact with otehr children and staff all day long. They have tried to teach him and speak to him. They seem to have a strong understanding of his cognitive limitations. They also seem to have a strong understanding of his areas of strength and areas of weakness.
he has had his own bedroom the entire time at 4 Winds because he cannot succeed enough with the other children to have a roommate. He has had time in the support area because a staff of people who are used to workingw with children with emotional needs have determined that he needed to be in the support area, away from the group, to succeed. In other words a full time staff of adults have worked with Matthwe and have struggled.
For me that means that I cannnot shoulder this all myself. Matthew needs more than one person can offer to him. We need to surround ourself with support so that Matthew has as many opportunities for success as possible.
My house is quieter than ever before. At night I miss the noise that is Matthew. In the mornings I miss his laughter. However, I don't miss the stress and intensity that Matthew can add to our house. My hope is that over these fwe weeks the other boys andI have created routines, and structures that will allow Matthew to come back home and have success.
I know that when matthew comes home we will need time to be together the 4 of us. Time to snuggle on the couch, to simply be together. We will need to rebuild our family unit. We need to reconnect. We are a family of 4...David and Jacob are very aware that one of us is missing......we are ready for our Matthew to come home.
When he got to 4 Winds he was quickly taken off of his Zoloft as that can create mood instability in some children with FAS and mood disorders. He was also taken of of his Lithium after a few days because his level was toxic and he was started on Depakote instead.
By the middle of the first week he was a wreck, an absolute mess. He was crying constantly, and so, so sad. I fought to have the staff restart his Zoloft and thankfully they did that. At the same time he had a horrible reaction to the Depakote- he became atoxic and struggled to walk,and do most motor activities.
It is heartwrenching to have your 9 year old going through so much emotionally, physically and to not be able to be with him. He could not understand what was going on, he felt horrendous and was not with his mommy. He was crying continuously and was so exhausted he was constantly falling asleep.
Once the doctors determined that he was having such a horrendous reaction to the Depakote he was taken off of the Depakote, but now in a short period of time his body has been through an awful lot of medcation changes. it is one thing if you are going on different antibiotics to solve an ear infection, but he was going on and off of different mood stabilizing medications. Talk about putting the human body through intense emotional reactions!
The only thing that I can hope is that through his time at 4 Winds we now have professionals who have spent a few weeks watching matthew 24/7. They have heard his questions all day long. They have watched him interact with otehr children and staff all day long. They have tried to teach him and speak to him. They seem to have a strong understanding of his cognitive limitations. They also seem to have a strong understanding of his areas of strength and areas of weakness.
he has had his own bedroom the entire time at 4 Winds because he cannot succeed enough with the other children to have a roommate. He has had time in the support area because a staff of people who are used to workingw with children with emotional needs have determined that he needed to be in the support area, away from the group, to succeed. In other words a full time staff of adults have worked with Matthwe and have struggled.
For me that means that I cannnot shoulder this all myself. Matthew needs more than one person can offer to him. We need to surround ourself with support so that Matthew has as many opportunities for success as possible.
My house is quieter than ever before. At night I miss the noise that is Matthew. In the mornings I miss his laughter. However, I don't miss the stress and intensity that Matthew can add to our house. My hope is that over these fwe weeks the other boys andI have created routines, and structures that will allow Matthew to come back home and have success.
I know that when matthew comes home we will need time to be together the 4 of us. Time to snuggle on the couch, to simply be together. We will need to rebuild our family unit. We need to reconnect. We are a family of 4...David and Jacob are very aware that one of us is missing......we are ready for our Matthew to come home.
Friday, April 29, 2011
matthew is back at four winds
I dont know what to do with my sadness, and I am so tired but yet I can't sleep.....I know that I have made the decision that is best for matthew, and for all of us, and I know that matthew needs his meds altered, and I know that by going to the hospital, we will likely end the cycle and matthew will come home healthier, but that doesnt make me less sad.
I miss the nonstop chatter that is matthew.
I miss the nuances, that sometimes make me crazy
I miss the fact that my son is not the healthy boy I thought he would be.
I hate that Matthew struggles.
I hate that matthew has a hard life
I hate that his hard life makes life harder for the other 2 boys and for me.
Why did his brain have to be damaged?
I can only hope that the doctors can help, and that a new mixture of medications and dosages will help Matthew.....but for tonight I am sad, and the house feels a little too quiet without my Matthew.
I miss the nonstop chatter that is matthew.
I miss the nuances, that sometimes make me crazy
I miss the fact that my son is not the healthy boy I thought he would be.
I hate that Matthew struggles.
I hate that matthew has a hard life
I hate that his hard life makes life harder for the other 2 boys and for me.
Why did his brain have to be damaged?
I can only hope that the doctors can help, and that a new mixture of medications and dosages will help Matthew.....but for tonight I am sad, and the house feels a little too quiet without my Matthew.
Wednesday, April 13, 2011
Medicaid Waiver Status for matthew
I am a very proud person- I do not like to accept help, and I feel it is very important that I be an independent person, especially financially. That said, I am the director of a not for profit preschool program, which is another way of saying I work hard for 40 plus hours per week, but there just isnt a lot of money that goes into making my salary!
When I first found out that Matthew was struggling with Developmental issues, I was encouraged to apply for the medicaid waiver, and I was appalled. After all, why would I need medicaid for Matthew? Did someone think I was incapable of paying for Matthew's pullups? medications? etc.... It was explained to me multiple times that the Medicaid waiver was there to offer respite support and to help pay for those expenses that were above and beyond those of a typically develping child. For a while I scoffed at the idea, insistent that I didnt need help, and then when Matthew was 6.5 and still wearing pullups, I decided that it might just be time to further investigate this program.
At that time I was paying for pullups for my 6.5year old and my 5year old and diapers for my 2.5 year old, and I was breaking the bank. In addition Matthew was on a lot of medication, David was on a lot of medication, and I was paying a lot of copays for the 2 of them, and I realized that we were not going to be able to be financially independent with these expenses. Around this time, Matthew began to struggle behaviorally more and it was apparent that I was in need of more help and the other boys were in need of some time without Matthew so that they could decompress from the stress he was adding to our house, and so I decided to look into the Medicaid waiver program.
After lots of waiting, Matthew was approved for the medicaid waiver program and shortly afterwards David was approved as well. I quickly realized that the medicaid waiver was not for me, but it was truly for my boys. When I was not spending hundreds of dollars on diapers and pullups, there was money that I could use for us to do things as a family. When matthew was with his respite provider, I had time with David and Jacob where we could do things just the 3 of us, AND Matthew had time with an adult who was there just for him. It was time that he could do some fun things, and the respite provider could work with him on different skills like proper behavior when he was out in the community, money management skills, playground behavior and more.
Currently, Matthew's medication alone would cost well over $300 per month if I had to pay for it out of pocket, and his doctor expenses would be around $200 per month, in addition, he is still in diapers at night and those would cost an additional $150 per month. Add to this that David's needs are similar, and it simply is too expensive to care for a child with special needs without support.
Sadly, we are now in the process of getting matthew approved for permanent medicaid waiver status, and it is possible that he will not qualify. Matthew is one of the children who easily fall between the cracks in our society. You see, he does not clearly fall into the category of a child with a psychiatric illness, but he also doesnt clearly fall into the category of a child with a developmental illness.
If he was a child with a psychiatric illness, he could receive respite and residential habilitation, but he would not receive the financial benefit of medicaid. As a child with a developmental disorder, he will receive the benefit of respite, residential habilitation and the coverage of medicaid. he has an IQ of 66, but his diagnosis are mood disorder not otherwise specified and Fetal Alcohol. The determination as to whether he qualifies as a child with a permanent developmental disorder requires that we prove that he 1. has a developmental disorder that occurred before the age of 18- he does, he has had support sincehe was 18 months of age. 2. that he is unlikely to outgrow these delays- I would assume that if we were goingto see him outgrowing his needs taht we would be seeing more growth at this point, and him catching up to his peers- sadly the delays are widening as his peers are gaining skills at a fast pace. 3. That his disabilities are developmental in nature and not due to another cause- Matthew was matthew since he was a baby- he has not changed. That said, it took doctors and specialists a long time to determine what disorder Matthew had and so there are a lot of records that give a lot of confusing information- some doctors said matthew was on the autsim spectrum, but as he got older it became very apparent that he wasn't on the autism spectrum. Some doctors have said that Matthew has a mood disorder- that is likely true, however the mood disorder would not cause learning delays and social disabilities.
It is most likely that Matthew has a developmental delay that is due to a brain injury which was caused by alcohol used by his birthmother when he was a fetus. However, now there is no contact with his birthmother, so it is impossible to gather the information that states that she drank while pregnant with Matthew. But, guess what is needed in order to give a firm diagnosis that would qualify Matthew for the Medicaid Waiver? Proof that Matthew's mom drank while she was pregnant with him.
I am so tired of circles and circles of beaurcracy. Matthew deserves the supports that are provided to him through the office of developmental disabilities services. By qualifying for these supports, Matthew has the best opportunity to have his needs met as a teenager and young adult. matthwe will likely need support throughout his life- he will need a job coach, he will need someone to help him with money management, he will need someone to make sure that he is making smart choices and decisions. Qualifying now for the medicaid waiver means that these supports are in place as matthew gets closer to adulthood.
I will continue to do the leg work necessary to try to ensure that Matthew qualifies, but it just seems to me that life should be a little more simplistic- I know that there have to be standards in place that ensure that only people with true needs are being served by federal programs, but truly it seems like we are splitting hairs as we try to determine whether it is a developmental or a psychiatric disability that is affecting a child. Fetal alcohol syndrome leads to both cognitive challenges (developmental disabilities) and mood disorders ( psychiatric disabilities) the question of which came first should not be of prime importance- the question that needs to be asked is how do we help this child and this family to ensure that the child is supported in the best ways possible.
When I first found out that Matthew was struggling with Developmental issues, I was encouraged to apply for the medicaid waiver, and I was appalled. After all, why would I need medicaid for Matthew? Did someone think I was incapable of paying for Matthew's pullups? medications? etc.... It was explained to me multiple times that the Medicaid waiver was there to offer respite support and to help pay for those expenses that were above and beyond those of a typically develping child. For a while I scoffed at the idea, insistent that I didnt need help, and then when Matthew was 6.5 and still wearing pullups, I decided that it might just be time to further investigate this program.
At that time I was paying for pullups for my 6.5year old and my 5year old and diapers for my 2.5 year old, and I was breaking the bank. In addition Matthew was on a lot of medication, David was on a lot of medication, and I was paying a lot of copays for the 2 of them, and I realized that we were not going to be able to be financially independent with these expenses. Around this time, Matthew began to struggle behaviorally more and it was apparent that I was in need of more help and the other boys were in need of some time without Matthew so that they could decompress from the stress he was adding to our house, and so I decided to look into the Medicaid waiver program.
After lots of waiting, Matthew was approved for the medicaid waiver program and shortly afterwards David was approved as well. I quickly realized that the medicaid waiver was not for me, but it was truly for my boys. When I was not spending hundreds of dollars on diapers and pullups, there was money that I could use for us to do things as a family. When matthew was with his respite provider, I had time with David and Jacob where we could do things just the 3 of us, AND Matthew had time with an adult who was there just for him. It was time that he could do some fun things, and the respite provider could work with him on different skills like proper behavior when he was out in the community, money management skills, playground behavior and more.
Currently, Matthew's medication alone would cost well over $300 per month if I had to pay for it out of pocket, and his doctor expenses would be around $200 per month, in addition, he is still in diapers at night and those would cost an additional $150 per month. Add to this that David's needs are similar, and it simply is too expensive to care for a child with special needs without support.
Sadly, we are now in the process of getting matthew approved for permanent medicaid waiver status, and it is possible that he will not qualify. Matthew is one of the children who easily fall between the cracks in our society. You see, he does not clearly fall into the category of a child with a psychiatric illness, but he also doesnt clearly fall into the category of a child with a developmental illness.
If he was a child with a psychiatric illness, he could receive respite and residential habilitation, but he would not receive the financial benefit of medicaid. As a child with a developmental disorder, he will receive the benefit of respite, residential habilitation and the coverage of medicaid. he has an IQ of 66, but his diagnosis are mood disorder not otherwise specified and Fetal Alcohol. The determination as to whether he qualifies as a child with a permanent developmental disorder requires that we prove that he 1. has a developmental disorder that occurred before the age of 18- he does, he has had support sincehe was 18 months of age. 2. that he is unlikely to outgrow these delays- I would assume that if we were goingto see him outgrowing his needs taht we would be seeing more growth at this point, and him catching up to his peers- sadly the delays are widening as his peers are gaining skills at a fast pace. 3. That his disabilities are developmental in nature and not due to another cause- Matthew was matthew since he was a baby- he has not changed. That said, it took doctors and specialists a long time to determine what disorder Matthew had and so there are a lot of records that give a lot of confusing information- some doctors said matthew was on the autsim spectrum, but as he got older it became very apparent that he wasn't on the autism spectrum. Some doctors have said that Matthew has a mood disorder- that is likely true, however the mood disorder would not cause learning delays and social disabilities.
It is most likely that Matthew has a developmental delay that is due to a brain injury which was caused by alcohol used by his birthmother when he was a fetus. However, now there is no contact with his birthmother, so it is impossible to gather the information that states that she drank while pregnant with Matthew. But, guess what is needed in order to give a firm diagnosis that would qualify Matthew for the Medicaid Waiver? Proof that Matthew's mom drank while she was pregnant with him.
I am so tired of circles and circles of beaurcracy. Matthew deserves the supports that are provided to him through the office of developmental disabilities services. By qualifying for these supports, Matthew has the best opportunity to have his needs met as a teenager and young adult. matthwe will likely need support throughout his life- he will need a job coach, he will need someone to help him with money management, he will need someone to make sure that he is making smart choices and decisions. Qualifying now for the medicaid waiver means that these supports are in place as matthew gets closer to adulthood.
I will continue to do the leg work necessary to try to ensure that Matthew qualifies, but it just seems to me that life should be a little more simplistic- I know that there have to be standards in place that ensure that only people with true needs are being served by federal programs, but truly it seems like we are splitting hairs as we try to determine whether it is a developmental or a psychiatric disability that is affecting a child. Fetal alcohol syndrome leads to both cognitive challenges (developmental disabilities) and mood disorders ( psychiatric disabilities) the question of which came first should not be of prime importance- the question that needs to be asked is how do we help this child and this family to ensure that the child is supported in the best ways possible.
15q11.2
That is the name of David's chromosomal disorder. What it means is that a very, very, very tiny duplication was made on the top of David's 15th chromosome. The impact of this duplication ranges from nothing at all to complex developmental disabilities......David is one of the Bloom boys, which basically means he does nothing half way....he has decided to go full force and make sure that he takes full advantage of any and all implications that this duplication can have on his body.
This duplication is known to cause autism like developmental delays, seizures, speech delays and motor delays. Apparently all of the doctors who have seen David who have tried to put their finger on what exactly is the reason for david's delays have all been correct- he has symptoms that appear like autism spectrum disorders but cannot be completely defined as autism spectrum disorder. He has always had speech delays and motor delays, and well the seizures, they have definitely had an impact on him in the past and even though they are now well controlled, they are still occurring infrequently.
What does this mean in the long run for David? Likely that he will continue on his developmental path in life. He will learn, but his learning will be slower and will require a lot of intensive teaching.
he will require time to process information, and to learn new skills. He is medically no more fragile than he was in the past, and thankfully there are no other implications of this duplication than what we are already dealing with,so that is great news.
I am thankful to have an answer to the What question for David, I am trying to make peace with the "why" question....why did this happen? Why did it happen to David? And I am moving forward.....baby steps, but I have stopped obsessing about the name and researching it online...and that has led to me feeling more peace.
This duplication is known to cause autism like developmental delays, seizures, speech delays and motor delays. Apparently all of the doctors who have seen David who have tried to put their finger on what exactly is the reason for david's delays have all been correct- he has symptoms that appear like autism spectrum disorders but cannot be completely defined as autism spectrum disorder. He has always had speech delays and motor delays, and well the seizures, they have definitely had an impact on him in the past and even though they are now well controlled, they are still occurring infrequently.
What does this mean in the long run for David? Likely that he will continue on his developmental path in life. He will learn, but his learning will be slower and will require a lot of intensive teaching.
he will require time to process information, and to learn new skills. He is medically no more fragile than he was in the past, and thankfully there are no other implications of this duplication than what we are already dealing with,so that is great news.
I am thankful to have an answer to the What question for David, I am trying to make peace with the "why" question....why did this happen? Why did it happen to David? And I am moving forward.....baby steps, but I have stopped obsessing about the name and researching it online...and that has led to me feeling more peace.
Tuesday, March 29, 2011
what a day
I am in need of a battery recharge and i am thankful that I am going away overnight in 2 weeks, I only hope that I make it until that wonderful night away. I think what I could really use is to go away one morning and come back after a full night of sleep and a full day of sleep.....maybe then I would feel completely and totally rested. Then again, are any parents truly well rested? I just feel like right now my anxiety is sky high......
David is doing the nighttime cough that means he is having seizures. He is awake a lot during the night and just doesn't "look right". His teacher has noticed a change in him, I am noticing that he is having trouble getting some words out....certainly, most people would notice nothing right now, but I know my little boy intimately, and I know when he is just not 100%. So while he is ok, he is just not completely well, and so I am worried as any good mom would be.....so in my worry about David I am functioning at not quite 100%.
Add to that worry about David, that I am thinking nonstop about what to do with Jacob next year. Should he go to kindergarten? Will he be better off to wait? Will he receive speech services if he doesn't go to kindergarten? Will he struggle and be frustrated if I send him to kindergarten and he isn't quite ready? I feel like he could use another year to mature. Unfortunately, he may not get the speech services he really needs if he stays in preschool another year, so it is hard to know what to do to make a good decision for jacob.
On top of all of this Matthew is still wetting the bed, and I am exhausted. It is constant....every single night. He wets through 2 sheets, 4 adult diapers, 2 diaper pads that are meant to keep him dry, and a chuck sheet on the bed. His new obsession is drinking and he is expending so much energy trying to access liquid however he can. i truly don't know which of us is struggling more....I can't stand to listen to the obsession and I am sure that thinking about drinking all day long cannot be good for him. Every place he goes he notices where he can get a drink, then he works to come up with a reason that I will allow him to get a drink, then he has to put on a show to prove how "thirsty" he is......he has to be exhausted.
I waited weeks to get him into a Pediatric Urologist today and I was so hopeful that he would be able to help us......want to know what he suggests.......wait for it.....it is impressive, definitely worth his years at Medical school.........
Give him adult diapers for sleeping and collect his urine over a weekend!
As I started to get hysterical in the office I reiterated how many pullups he was using. I begged the doctor for input as to what else we could use....his answer....
DEPENDS....give the boy DEPENDS.....
what does he think we have been using for months already? Does he have any idea how hard it will be to collect urine for matthew for a full weekend? He wants me to spend one night waking him every 2 hours to take him to the bathroom.....if I thought this would all end with a solution, I would get right on top of all of it, I promise I would....but it turns out there aren't any solutions.....there is no magic cure.
I have rarely left an appointment feeling quite so defeated. I cannot do this much longer. As a single mom I am exhausted, I am cooked, I am totally and completely done. After a small, ok, not SO small, temper tantrum, I decided to turn to bribery as my last ditch effort to see if I could get matthew to help me keep him dry. (I felt like screaming "help me Help you!" )
I have offered up gum whenever he is thirsty to see if this will help, and I have offered an overnight at his grandparents when he has 3 dry nights! To sweeten the deal, I offered to buy him a bike. Truly, right now I would give him anything for a night with dry sheets! I need a vacation, I need some time away, I need some time by myself to simply sleep.
I feel like I am teetering on the edge and the edge is getting smaller and smaller and I dont know how much longer I can hang on. Once again I am at that point where something has to give. I really need a dry bed, I think I could cope with the other ups and downs of life, if we had a dry bed, or dare I dream, 2 dry nights in a row. Please help, and pray to the gods of dryness for us, and if you have any extra prayers, feel free to pray to the god of kindergarten decisions.....I need to stop being the decision maker for a little while....maybe it is time to get a new Crazy 8 ball and see if it can make some good decisions for my family!
David is doing the nighttime cough that means he is having seizures. He is awake a lot during the night and just doesn't "look right". His teacher has noticed a change in him, I am noticing that he is having trouble getting some words out....certainly, most people would notice nothing right now, but I know my little boy intimately, and I know when he is just not 100%. So while he is ok, he is just not completely well, and so I am worried as any good mom would be.....so in my worry about David I am functioning at not quite 100%.
Add to that worry about David, that I am thinking nonstop about what to do with Jacob next year. Should he go to kindergarten? Will he be better off to wait? Will he receive speech services if he doesn't go to kindergarten? Will he struggle and be frustrated if I send him to kindergarten and he isn't quite ready? I feel like he could use another year to mature. Unfortunately, he may not get the speech services he really needs if he stays in preschool another year, so it is hard to know what to do to make a good decision for jacob.
On top of all of this Matthew is still wetting the bed, and I am exhausted. It is constant....every single night. He wets through 2 sheets, 4 adult diapers, 2 diaper pads that are meant to keep him dry, and a chuck sheet on the bed. His new obsession is drinking and he is expending so much energy trying to access liquid however he can. i truly don't know which of us is struggling more....I can't stand to listen to the obsession and I am sure that thinking about drinking all day long cannot be good for him. Every place he goes he notices where he can get a drink, then he works to come up with a reason that I will allow him to get a drink, then he has to put on a show to prove how "thirsty" he is......he has to be exhausted.
I waited weeks to get him into a Pediatric Urologist today and I was so hopeful that he would be able to help us......want to know what he suggests.......wait for it.....it is impressive, definitely worth his years at Medical school.........
Give him adult diapers for sleeping and collect his urine over a weekend!
As I started to get hysterical in the office I reiterated how many pullups he was using. I begged the doctor for input as to what else we could use....his answer....
DEPENDS....give the boy DEPENDS.....
what does he think we have been using for months already? Does he have any idea how hard it will be to collect urine for matthew for a full weekend? He wants me to spend one night waking him every 2 hours to take him to the bathroom.....if I thought this would all end with a solution, I would get right on top of all of it, I promise I would....but it turns out there aren't any solutions.....there is no magic cure.
I have rarely left an appointment feeling quite so defeated. I cannot do this much longer. As a single mom I am exhausted, I am cooked, I am totally and completely done. After a small, ok, not SO small, temper tantrum, I decided to turn to bribery as my last ditch effort to see if I could get matthew to help me keep him dry. (I felt like screaming "help me Help you!" )
I have offered up gum whenever he is thirsty to see if this will help, and I have offered an overnight at his grandparents when he has 3 dry nights! To sweeten the deal, I offered to buy him a bike. Truly, right now I would give him anything for a night with dry sheets! I need a vacation, I need some time away, I need some time by myself to simply sleep.
I feel like I am teetering on the edge and the edge is getting smaller and smaller and I dont know how much longer I can hang on. Once again I am at that point where something has to give. I really need a dry bed, I think I could cope with the other ups and downs of life, if we had a dry bed, or dare I dream, 2 dry nights in a row. Please help, and pray to the gods of dryness for us, and if you have any extra prayers, feel free to pray to the god of kindergarten decisions.....I need to stop being the decision maker for a little while....maybe it is time to get a new Crazy 8 ball and see if it can make some good decisions for my family!
Friday, March 25, 2011
Growth for the Bloom Boys!
Tonight was the Learning Fair at Matthew's school.......While I always like the idea of going to events at Matthew's or David's school, usually there is a reason we can't go, or, truth be told, I find a reason we can't go.
It is hard to bring 3 kids to any school event on a Friday night. It is harder to bring 2 school age kids and one preschooler to a school event on a Friday night. It is even harder as a single mom, to bring 2 school age kids and one preschooler to a school event on a Friday night.
That said, I am so glad that we went tonight. The boys have grown up a lot, and it is important that we try these different experiences so that the boys have different opportunities. These programs are also a great way for me to see just how far we have come!
I clearly remember going to the Learning Fair 2 years ago. Matthew was in 2nd grade, David was 4 and Jacob was 2. We sat through a concert and then did some fun stuff with the music teacher, but I also spent a lot of time wrestling with the boys, chasing Jacob and keeping David calm.....
Fast forward 2 years and we are doing GREAT!
Tonight we saw a teacher from Mad Science- he was a little over the top for me, but the boys did great. The lesson was on air pressure, and went WAY OVER MY HEAD, but he used a leaf blower, and created a version of a hovercraft so the boys were thrilled!
Then we went to a Kids Cooking activity....I mean really....could there have been a better class for Matthew? He walked in and fell in love....the woman leading the class had been at Glenmont on Thursday making smoothies and he LOVED her. The way to matthew's heart is through his stomach!, so to have this woman at his school 2 days in a row, it was like the god's were smiling on matthew!
The boys all did great cutting strawberries, folding cool whip and yogurt together, and creating their own little healthy snacks. I was able to meet a few of the kids that Matthew knows at school, and I had a great time chatting with a few moms at my table.
Of course, it got a little hairy when David wanted more vanilla yogurt, and jacob wanted another dessert shell. But in all honesty, the challenges were over in less than 2 minutes! I have learned to read David better, and I knew that at 7:15 at night the last place he would want to be was in an over crowded school building.
The moms who were near us were super helpful, and you could tell that they were enjoying watching David and Jacob cut the fruit and chatter together! Matthew ended up proposing to the woman leading the session, and announcing "my mom needs to know where to buy a blender so she can make me some smoothies"!
I was able to see the humor in the entire evening, to gush a little at how well my boys listened and to bribe them to leave after the first workshop instead of staying until 8:30 making sketchbooks!
It was a fabulous night....the next time a note comes home about a school event, we will go again and try to have another success....but for tonight, I am basking in the glory that my boys did great, I did great and we were just another family at the Learning Fair!
It is hard to bring 3 kids to any school event on a Friday night. It is harder to bring 2 school age kids and one preschooler to a school event on a Friday night. It is even harder as a single mom, to bring 2 school age kids and one preschooler to a school event on a Friday night.
That said, I am so glad that we went tonight. The boys have grown up a lot, and it is important that we try these different experiences so that the boys have different opportunities. These programs are also a great way for me to see just how far we have come!
I clearly remember going to the Learning Fair 2 years ago. Matthew was in 2nd grade, David was 4 and Jacob was 2. We sat through a concert and then did some fun stuff with the music teacher, but I also spent a lot of time wrestling with the boys, chasing Jacob and keeping David calm.....
Fast forward 2 years and we are doing GREAT!
Tonight we saw a teacher from Mad Science- he was a little over the top for me, but the boys did great. The lesson was on air pressure, and went WAY OVER MY HEAD, but he used a leaf blower, and created a version of a hovercraft so the boys were thrilled!
Then we went to a Kids Cooking activity....I mean really....could there have been a better class for Matthew? He walked in and fell in love....the woman leading the class had been at Glenmont on Thursday making smoothies and he LOVED her. The way to matthew's heart is through his stomach!, so to have this woman at his school 2 days in a row, it was like the god's were smiling on matthew!
The boys all did great cutting strawberries, folding cool whip and yogurt together, and creating their own little healthy snacks. I was able to meet a few of the kids that Matthew knows at school, and I had a great time chatting with a few moms at my table.
Of course, it got a little hairy when David wanted more vanilla yogurt, and jacob wanted another dessert shell. But in all honesty, the challenges were over in less than 2 minutes! I have learned to read David better, and I knew that at 7:15 at night the last place he would want to be was in an over crowded school building.
The moms who were near us were super helpful, and you could tell that they were enjoying watching David and Jacob cut the fruit and chatter together! Matthew ended up proposing to the woman leading the session, and announcing "my mom needs to know where to buy a blender so she can make me some smoothies"!
I was able to see the humor in the entire evening, to gush a little at how well my boys listened and to bribe them to leave after the first workshop instead of staying until 8:30 making sketchbooks!
It was a fabulous night....the next time a note comes home about a school event, we will go again and try to have another success....but for tonight, I am basking in the glory that my boys did great, I did great and we were just another family at the Learning Fair!
David
I am so excited....which truly seems like an odd emotion based on the news I received today, but excited is how I am feeling, so I am going to go with it!
We have seen the spectrum of Doctor's, everything including developmental specialists, neurologists, neuropsychologists, developmental psychologists, pediatric epileptologits, and more......and the one thing that no one has been able to determine is what is the official diagnosis for David, and what is the cause of his issues......
Today we got the beginning of an answer!
In February we went to see the geneticist at Albany Med, Dr Darius Adams. It was an appointment that I didnt really want to go to, I felt it was a waste of time, but I decided that since we had waited months for the appointment, it couldn't hurt to go. The appointment itself was pretty brief. He and I discussed David's development since birth. He examined David and ran some urine tests and blood tests. I was told it would take about 6 weeks to get any results and to call the office to check in.
After calling for about a week, I finally spoke to Katie, one of the nurses, today. Apparently a genetic duplication has been found on one of David's chromosomes. At first Katie said that this may or may not be the cause of David's issues. As she explained this mutation is a pretty variable duplication, and it has some effects on some people and on others it presents with little or no effect developmentally.
As she looked up more information however it became clear to me that this has to be the way to explain David. This duplication is known to cause seizures, autism, speech delays and motor delays.....The consistent question for 5 years now has been "does david have autism" with the answer being "it really depends on the day you see him. He certainly meets a lot of the criteria for diagnosing autism, but an autism diagnosis alone doesnt describe David completely". The other question has been "does David have seizures", with the answer being " sure as heck seems like it, but his EEG is not clear".
Essentially, knowing that there is a chromosomal issue allows me to put all of this into a little package, and gives me an answer to the question that I have struggled with. I have always felt that there had to be a way to explain all of the things David struggles with. This chromosomal error gives us that explanation.
Whether there is a way to treat it or not, and whether it will help to predict the future or not, I have an answer.....I have a path to follow, and tonight I will sleep more soundly!
As a parent I have struggled for more than 6 years. I have been to doctors I have loved and doctors I have hated! I have had people doubt what I see in David, and people say that it is time to stop looking for a diagnosis. I am the kind of person who needs an answer. I can deal with anything, but I like to know what I am dealing with.
I am looking forward to meeting with the geneticist in a few weeks to learn more about what this duplication means for David educationally, socially and for the future...
We have seen the spectrum of Doctor's, everything including developmental specialists, neurologists, neuropsychologists, developmental psychologists, pediatric epileptologits, and more......and the one thing that no one has been able to determine is what is the official diagnosis for David, and what is the cause of his issues......
Today we got the beginning of an answer!
In February we went to see the geneticist at Albany Med, Dr Darius Adams. It was an appointment that I didnt really want to go to, I felt it was a waste of time, but I decided that since we had waited months for the appointment, it couldn't hurt to go. The appointment itself was pretty brief. He and I discussed David's development since birth. He examined David and ran some urine tests and blood tests. I was told it would take about 6 weeks to get any results and to call the office to check in.
After calling for about a week, I finally spoke to Katie, one of the nurses, today. Apparently a genetic duplication has been found on one of David's chromosomes. At first Katie said that this may or may not be the cause of David's issues. As she explained this mutation is a pretty variable duplication, and it has some effects on some people and on others it presents with little or no effect developmentally.
As she looked up more information however it became clear to me that this has to be the way to explain David. This duplication is known to cause seizures, autism, speech delays and motor delays.....The consistent question for 5 years now has been "does david have autism" with the answer being "it really depends on the day you see him. He certainly meets a lot of the criteria for diagnosing autism, but an autism diagnosis alone doesnt describe David completely". The other question has been "does David have seizures", with the answer being " sure as heck seems like it, but his EEG is not clear".
Essentially, knowing that there is a chromosomal issue allows me to put all of this into a little package, and gives me an answer to the question that I have struggled with. I have always felt that there had to be a way to explain all of the things David struggles with. This chromosomal error gives us that explanation.
Whether there is a way to treat it or not, and whether it will help to predict the future or not, I have an answer.....I have a path to follow, and tonight I will sleep more soundly!
As a parent I have struggled for more than 6 years. I have been to doctors I have loved and doctors I have hated! I have had people doubt what I see in David, and people say that it is time to stop looking for a diagnosis. I am the kind of person who needs an answer. I can deal with anything, but I like to know what I am dealing with.
I am looking forward to meeting with the geneticist in a few weeks to learn more about what this duplication means for David educationally, socially and for the future...
Wednesday, February 2, 2011
not the mom i thought i would be
This parenting thing is for the birds....and yes, as I parent Jacob there are plenty of things that happen that I regret, or I wish I hadn't done, but trust me,there is nothing that a typical child can do that can hold a candle to a child with Fetal Alcohol Syndrome...
I seriously do not know which end is up after tonight....I don't know what to do, I dont know how to do it better, and I am pretty sure I need a break, but in parenting THERE IS NO BREAK....and worst of all, even if I took a break, it all starts back up again once the break is over.....so really, there is no break.
Allow me to walk you through what happened.....
Today was a snow day, I knew it was going to be a snow day, and I know David likes to cook, so I decided that we would make a cake. We got up, the day started pretty well and Matthew asked to go outside.....he went out, and actually for one of the first times ever, ended up at a neighborhood child's house and was there for a few hours.
I spoke to the mom a few times, and he was doing fine, so I went on with my day with Jacob and David.
We had a great time baking a cake, we built a fort, it was a busy day, a little stressful, but nothing I couldnt handle.....About 2:30 Matthew came home and still wanted to play outside, so he dropped off some cookies from the playdate, and 3 packets of hot cocoa and went outside to play.
The little guys had been resting, but they got up around 3, and we hung out on the couch together. Eventually Matthew came inside. The energy level in the house was a little loud, and we stopped playing a few times to talk about being kind to each other etc.... finally at 4:45 I decided I needed a mommy break and told the boys they could watch a video.
Well things got a little quiet, so I became concerned. After a little asking, I found out that Matthew had been eating frosting out of the container and it was gone.....so I told him I was going to throw out the hot cocoa. Now you have to know that Matthew has been peeing the bed mutiple times a night for 5 weeks now, and you have to know the boy is OBSESSED with hot cocoa. So my choices were to 1. make him hot cocoa tonight- but it was late and this would lead to more bedwetting
2. not make the hot cocoa tonight and he would create a mess with it in the middle of the night due to his obsessing.
Now there were 3 packets of hot cocoa, so I asked him for all 3. He gave me 1 and then went on and on about how he didnt know where the other 2 were.....aka he was lying.
After fruitless searching around the house and me getting more and more angry, I told him he would go to bed if he didnt give it to me....suddenly.....AHA he found it on top of thefridge....really, did it get up there by itself? Really did he now know where it was the whole time? UGH
So this is where it gets frustrating, because now I know he had hid the 1 container, but he was stomping around insisting he didnt know where the other container was. WHO CAN BELIEVE HIM???? It truly became intensely frustrating....do I put him to bed? Do I trust that he doesn't know where it is? I walked him through trying to find it, and as I asked him questions this is what I would get.....
My words are in italics
"did you put the hot cocoa on top of the fridge" YES
"where is the other hot cocoa" the 2nd one was on top of the fridge
"I know you got the second one from on top of the fridge, where is the other one?" I didnt put it on top of the fridge
"ok, but you put one on top of the fridge" No, I put the second one on top of the fridge
Round and round, seriously until I didnt know which end was up.....finally I decided to drop it, and went upstairs and I found a smear of hot cocoa on the bathroom door, so of course then I had to reopen the conversation.....because now I likely have an OPEN container of hot cocoa powder...and as I began to requestion him....this is what I got:
"I hate Seany's mom....She yelled at me!" Now he had been at Tres's house,so it took me a minute to figure out who Seany's mom was, and really did I care about Seany's mom, not really because I justwanted the HOT COCOA!
Well as he continued on and on about Seany's mom it turned out he apparently had a scuffle with another mom in the neighborhood....something about a snowbank....but then as I tried to gather more info he also told me he didnt see Seany's mom today.....so really, who knows what happened.
I feel like I am going insane....I think he knows he can make me insane....so the day ended with a yelling battle, that like all yelling battles ends with me feeling like a crappy mom.....and I threw out the hot cocoa, and he ate the frosting, so there is nothing in the house to wallow my crappy mom feelings in, so I have had to sit here just feeling pretty crappy and knowing in the morning, chances are great that I will wake up to a hot cocoa mess somewhere.
:
I seriously do not know which end is up after tonight....I don't know what to do, I dont know how to do it better, and I am pretty sure I need a break, but in parenting THERE IS NO BREAK....and worst of all, even if I took a break, it all starts back up again once the break is over.....so really, there is no break.
Allow me to walk you through what happened.....
Today was a snow day, I knew it was going to be a snow day, and I know David likes to cook, so I decided that we would make a cake. We got up, the day started pretty well and Matthew asked to go outside.....he went out, and actually for one of the first times ever, ended up at a neighborhood child's house and was there for a few hours.
I spoke to the mom a few times, and he was doing fine, so I went on with my day with Jacob and David.
We had a great time baking a cake, we built a fort, it was a busy day, a little stressful, but nothing I couldnt handle.....About 2:30 Matthew came home and still wanted to play outside, so he dropped off some cookies from the playdate, and 3 packets of hot cocoa and went outside to play.
The little guys had been resting, but they got up around 3, and we hung out on the couch together. Eventually Matthew came inside. The energy level in the house was a little loud, and we stopped playing a few times to talk about being kind to each other etc.... finally at 4:45 I decided I needed a mommy break and told the boys they could watch a video.
Well things got a little quiet, so I became concerned. After a little asking, I found out that Matthew had been eating frosting out of the container and it was gone.....so I told him I was going to throw out the hot cocoa. Now you have to know that Matthew has been peeing the bed mutiple times a night for 5 weeks now, and you have to know the boy is OBSESSED with hot cocoa. So my choices were to 1. make him hot cocoa tonight- but it was late and this would lead to more bedwetting
2. not make the hot cocoa tonight and he would create a mess with it in the middle of the night due to his obsessing.
Now there were 3 packets of hot cocoa, so I asked him for all 3. He gave me 1 and then went on and on about how he didnt know where the other 2 were.....aka he was lying.
After fruitless searching around the house and me getting more and more angry, I told him he would go to bed if he didnt give it to me....suddenly.....AHA he found it on top of thefridge....really, did it get up there by itself? Really did he now know where it was the whole time? UGH
So this is where it gets frustrating, because now I know he had hid the 1 container, but he was stomping around insisting he didnt know where the other container was. WHO CAN BELIEVE HIM???? It truly became intensely frustrating....do I put him to bed? Do I trust that he doesn't know where it is? I walked him through trying to find it, and as I asked him questions this is what I would get.....
My words are in italics
"did you put the hot cocoa on top of the fridge" YES
"where is the other hot cocoa" the 2nd one was on top of the fridge
"I know you got the second one from on top of the fridge, where is the other one?" I didnt put it on top of the fridge
"ok, but you put one on top of the fridge" No, I put the second one on top of the fridge
Round and round, seriously until I didnt know which end was up.....finally I decided to drop it, and went upstairs and I found a smear of hot cocoa on the bathroom door, so of course then I had to reopen the conversation.....because now I likely have an OPEN container of hot cocoa powder...and as I began to requestion him....this is what I got:
"I hate Seany's mom....She yelled at me!" Now he had been at Tres's house,so it took me a minute to figure out who Seany's mom was, and really did I care about Seany's mom, not really because I justwanted the HOT COCOA!
Well as he continued on and on about Seany's mom it turned out he apparently had a scuffle with another mom in the neighborhood....something about a snowbank....but then as I tried to gather more info he also told me he didnt see Seany's mom today.....so really, who knows what happened.
I feel like I am going insane....I think he knows he can make me insane....so the day ended with a yelling battle, that like all yelling battles ends with me feeling like a crappy mom.....and I threw out the hot cocoa, and he ate the frosting, so there is nothing in the house to wallow my crappy mom feelings in, so I have had to sit here just feeling pretty crappy and knowing in the morning, chances are great that I will wake up to a hot cocoa mess somewhere.
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