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.
Wednesday, July 13, 2011
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.
Subscribe to:
Posts (Atom)