I have heard from many people over the years that in order to curb Matthew's food obsessions, I need to just ensure that there is no "junk food" in our house. I have worked hard to limit the amount of junk food because I think it is healthier for everyone involved if it is limited, but most importantly it limits Matthew's obsessions.
The problem is that right now, no matter how hard I am working to limit his food intake, he is becoming more and more creative and obsessed.
I am a single mom who works 9:30-5:30 most days. This means that by the time I pick the boys up from the YMCA and get home and talk to the babysitter who watches David, it is typically 6:15 at the earliest before I am starting to cook dinner. At least 4 out of every 5 school nights, this means I am cooking dinner, or taking food from the crock pot, or reheating left overs from 6:15 until 6:45 and we are eating from 6:45 until 7:15. This leaves the boys a half hour until bed time.
For those nights when things are hard, or it is just too much to get it all together, I have the typical freezer foods of all working moms. There is frozen pizza, we have had fish sticks from trader joe's, hot dogs, and frozen hamburger patties from trader joe's. None of these foods make for healthy eating 7 nights a week, and they are not at all what my boys are offered. But on a night when there is a lot of homework, or we get home late, or I am simply exhausted, each of these foods beats a meal from McDonalds.
This week however, it is becoming apparent that I can no longer have frozen meals in the house. Matthew ate an entire frozen pizza and a frozen hamburger patty this morning. The other day he ate 5 hot dogs. On top of each of these items, he is eating the cereal I am leaving out for him each morning and whatever left overs he can scavenge from the night before.
We had sherbert in the house because that was what David wanted for his birthday treat. I discovered yesterday that Matthew had eaten the entire carton.
When I purchase a treat, like sherbert, for a special occasion, it is always a question of whether I purchase it and serve it once, and then throw it out or whether I purchase it and hope for the best. The sherbert I kept because I was hoping that David would have a little more another day this week. That didn't happen.
David also chose to have rolls as part of his birthday dinner. We had those again the other day with dinner and I threw out the remainder. Yesterday morning I found a mess of bread crumbs in Matthew's room- he had gone into the garbage and taken out the rolls and eaten them.
This means that even food in the garbage is no longer safe.
I can't lock up everything. The dry food items- cereal, juice boxes for school, healthy granola bars, are all locked in a lock box. There is a lock box that they make for the refrigerator that I recently found, I just have been in denial that it is needed, but I will likely order it tonight.
I feel like I am working so hard to protect Matthew from himself recently. That may be the hardest part of all of this. A mentally healthy person cannot predict what a mentally unstable person will do. I would never eat food from the garbage. I love food as much as anyone else, but once the food is in the garbage, it is off limits. I would never eat frozen food. For him it doesn't matter, it is eating the food, not the taste that matters.
He has been tested for Prader-willi syndrome and the test is negative. I have changed our food intake so that dyes are limited in his diet especially. His brain is addicted to carbohydrates. It is his drug of choice. Unfortunately, I have a family of 3 boys, and carbs are part of living for most people, but especially all children. My boys will choose fruits, they healthy eating habits. For Matthew this is not about food, it is about addiction. It is another part of his mental instability. It is the insanity he is living with.
For me this is a visible reminder of how much support he needs. It is a sad reminder of how intense his obsessions are. It is a reminder that this is a job that is too big for one person. I have to sleep. I cannot monitor him all night. His obsessions to him are more important than sleep, making his desire for food incessant even when he is supposed to be at rest.
Thursday, January 31, 2013
Monday, January 28, 2013
looking for help, finding closed doors
After a really rough weekend, I decided last night that I had to contact Healy House today for Matthew. Healy House is a 21 day respite program for children. Basically Healy House offers families who care for children with mental health or behavioral issues 21 day break. The goal is that you will be working to make improvements or changes over that 21 days so that the child can return to a better environment that is more able to help the child succeed.
This can mean that in the 21 days a therapist is being found for the child. It can mean that the school program is changing, it can mean that the child is adjusting to new medications. It can mean that the respite will allow the child to return home to new rules and structure. The goal is that something is changing or being changed over the 21 day respite period to allow for better success once the child returns to the home.
This morning I called Healy House to find out of there was a bed available for Matthew and I was told that I had to have our medicaid service coordinator do an intake phone call. I then called our medicaid service coordinator and asked him to call me so that he could get the information from me to call Healy House. I spoke to the medicaid service and filled him in on the incidents that have been taking place and he then called Healy House.
The staff at Healy House intake were concerned that Matthew would do better with a hospital placement rather than a respite placement, and again we begin the mental health circle. The hospital feels like there is nothing else they can do, that is why they discharged Matthew a week ago. Matthew is home and is not succeeding, so I need somewhere for him to go that is safe for him and will help him. Healy House is good option, but they are not sure that he is a good candidate for their program. I cannot imagine that the hospital would think it makes sense for him to return there, as they thought that they had done as much as they could with medication.
So now where do we go?
He can't go to the hospital...they do medication adjustments and feel like there is nothing to adjust
He can't stay home, it isn't safe for him and his brothers are struggling with Matthew's outbursts to feel safe.
Healy House is not sure he can go there as they feel he needs a more restrictive, hospital setting.
So where do we go? What do we do? Today, to do all of this took me over 4 hours. How many days do we do this for? Especially, because at the end of these 4 hours, there are no solutions. There is no plan. I know no more tonight than I knew this morning.
The only good thing that we have in our favor is that I have a therapist who we are working with now who is in our corner. We have a great medicaid service coordinator who feels my frustration at the system and is very dedicated to helping my boys.
I am a driven, educated person who is determined to do the best I can for all 3 of my children. While I am often filled with doubt, I am also determined that I have to look out for the physical, emotional and educational needs of my 3 boys. I am passionate about my ability to care for my boys and the only thing that is truly important to me is knowing that I can wake up each morning knowing that no matter what happens I am doing the best I can.
What if I didn't have the support I have? What if I didn't know how to access the system to help my children? What if I wasn't so driven? What if..........
Remember, I have fought to access the mental health hospital and we have left there with no support.
I have accessed the police, and they have had no answers. I have accessed programs for children with special needs, and they have reached the limit of how they can help. I have accessed community programs, and they have no leads.
Seriously, if you are a family in crisis, there has to be plan.........It should read:
If you are a family in crisis, you should call 111-1111, you will be connected to an operator. If your child is in need of immediate help, you will be put in immediate touch with agency X. Agency X will be your support agency. They will ensure that you find appropriate medical care, psychiatric care and respite care for your child. Agency X will work with you and respond quickly in an emergency situation. Agency X will always have an emergency respite option, in response to an emergency situation.
Agency X will first work to ensure that everyone is physically safe. After ensuring physical safety, they will ensure everyone's emotional safety and finally they will ensure the health and safety of the family as a unit.
You will be discharged from Agency X if and only if your child is emotionally healthy for a period of at least one year. Staff from Agency X are responsible for ensuring a full system of care for each member of the family who is dealing with a child in crisis.
Just knowing that I could deal with one agency in crisis would help. Knowing that there is one number to call. One group of people who would know our story. One group of people who would respond. One place to call for help. That would be a solution! That would be a success! That would be a way to help a family in crisis when a child has mental health issues.
This can mean that in the 21 days a therapist is being found for the child. It can mean that the school program is changing, it can mean that the child is adjusting to new medications. It can mean that the respite will allow the child to return home to new rules and structure. The goal is that something is changing or being changed over the 21 day respite period to allow for better success once the child returns to the home.
This morning I called Healy House to find out of there was a bed available for Matthew and I was told that I had to have our medicaid service coordinator do an intake phone call. I then called our medicaid service coordinator and asked him to call me so that he could get the information from me to call Healy House. I spoke to the medicaid service and filled him in on the incidents that have been taking place and he then called Healy House.
The staff at Healy House intake were concerned that Matthew would do better with a hospital placement rather than a respite placement, and again we begin the mental health circle. The hospital feels like there is nothing else they can do, that is why they discharged Matthew a week ago. Matthew is home and is not succeeding, so I need somewhere for him to go that is safe for him and will help him. Healy House is good option, but they are not sure that he is a good candidate for their program. I cannot imagine that the hospital would think it makes sense for him to return there, as they thought that they had done as much as they could with medication.
So now where do we go?
He can't go to the hospital...they do medication adjustments and feel like there is nothing to adjust
He can't stay home, it isn't safe for him and his brothers are struggling with Matthew's outbursts to feel safe.
Healy House is not sure he can go there as they feel he needs a more restrictive, hospital setting.
So where do we go? What do we do? Today, to do all of this took me over 4 hours. How many days do we do this for? Especially, because at the end of these 4 hours, there are no solutions. There is no plan. I know no more tonight than I knew this morning.
The only good thing that we have in our favor is that I have a therapist who we are working with now who is in our corner. We have a great medicaid service coordinator who feels my frustration at the system and is very dedicated to helping my boys.
I am a driven, educated person who is determined to do the best I can for all 3 of my children. While I am often filled with doubt, I am also determined that I have to look out for the physical, emotional and educational needs of my 3 boys. I am passionate about my ability to care for my boys and the only thing that is truly important to me is knowing that I can wake up each morning knowing that no matter what happens I am doing the best I can.
What if I didn't have the support I have? What if I didn't know how to access the system to help my children? What if I wasn't so driven? What if..........
Remember, I have fought to access the mental health hospital and we have left there with no support.
I have accessed the police, and they have had no answers. I have accessed programs for children with special needs, and they have reached the limit of how they can help. I have accessed community programs, and they have no leads.
Seriously, if you are a family in crisis, there has to be plan.........It should read:
If you are a family in crisis, you should call 111-1111, you will be connected to an operator. If your child is in need of immediate help, you will be put in immediate touch with agency X. Agency X will be your support agency. They will ensure that you find appropriate medical care, psychiatric care and respite care for your child. Agency X will work with you and respond quickly in an emergency situation. Agency X will always have an emergency respite option, in response to an emergency situation.
Agency X will first work to ensure that everyone is physically safe. After ensuring physical safety, they will ensure everyone's emotional safety and finally they will ensure the health and safety of the family as a unit.
You will be discharged from Agency X if and only if your child is emotionally healthy for a period of at least one year. Staff from Agency X are responsible for ensuring a full system of care for each member of the family who is dealing with a child in crisis.
Just knowing that I could deal with one agency in crisis would help. Knowing that there is one number to call. One group of people who would know our story. One group of people who would respond. One place to call for help. That would be a solution! That would be a success! That would be a way to help a family in crisis when a child has mental health issues.
Saturday, January 26, 2013
It's worse than I thought
Matthew came home from the hospital on Wednesday, January 16.
On Saturday, January 19, he had a huge tantrum that ended with Jacob, David and I leaving him with his respite worker while he raged and screamed.
On Monday, January January 21, he had a huge tantrum that resulted in our friend taking the other 2 boys with her in a hurry, and me calling the police for help.
On Friday, January 25 he had a tantrum at school that resulted in him going to the quiet room to calm down.
On Friday, January 25 he had a huge tantrum at home that resulted in me calling the police. In a week's time this is 4 huge tantrums. Tantrums where there was risk for the others involved. Tantrums that his brothers witnessed 3 times. Tantrums that are causing me stress. Tantrums that I know are scaring him and that makes me so sad.
Yesterday we were going out for David's birthday dinner with my parents. After I picked up Jacob, Matthew was touching Jacob's head, making Jacob whine- it is one of the things that Matthew does simply to bother Jacob. When I asked Matthew to stop, he denied that he was doing anything. I again asked him to stop, he again rubbed his head. I again asked him to stop rubbing his head, and he again denied doing it. At my wits end, I told him to get in the car, and told him he had lost the ability to have chocolate milk for dinner.
Why I took away chocolate milk I don't know! It is not a logical consequence, or a natural consequence, but I was tired of being lied to. I was tired of the whining and screaming the minute that Matthew and Jacob get together. I was tired and just wanted to have a nice family dinner and evening. I didn't realize that taking away chocolate milk would lead to such issues. In my mind we would still go to dinner, he would have lemonade or something else, and things would be ok.
However, for Matthew it was different. He started to threaten aggression immediately, and alternately scream that if I gave it back he would stop. I pulled over and hoped to rationalize.....you can't rationalize with someone who is being irrational. I also couldn't give back the chocolate milk. He has to know that I am serious and tantrumming will never, ever get him what he wants. I reminded him he could have lemonade. I reminded him we were still going out for dinner. He couldn't pull it together.
I called my parents to ask them to head towards us rather than meeting them at a restaurant. I then started driving towards home thinking a break would help. We didnt get more than a half mile, before Jacob was scared to be in the car, and I knew we were unsafe with me driving so I pulled into a church. At that point I asked Matthew to get out of the car. He got out, but started punching at Jacob's window and kicking the car. I hate above all else that he is so threatening towards Jacob. To punch at Jacob's window is such an unnecessary position of aggression.
Finally, because I wasn't sure if and when he might break the car window, and he wasn't calming down, I called 911 for help. He was raging and I was scared. The other 2 boys were panic stricken and nothing I could do would help them. I cannot promise them it will stop. I cannot make the screaming stop. I can promise to do my very best to keep them safe, but I don't truly know how long that will all last for. All it would have taken last night was him to hit the window just right and it would have broken. It wouldn't take much.
I was alternating between being panicked that he would hurt his brother, break the car window, or run into the road. There was no way for me to know what to do to keep all of us safe. No parent should feel this struggle and this fear. Especially, because had I known that taking away chocolate milk would have led to this, I never would have taken it away. Often that gets no response, a little disappointment, but no tantrum. All I wanted him to learn was that he has to treat Jacob better and be truthful, I thought a little disappointment would help him learn that. I was a mom who made maybe not the best parenting decision, but certainly all of us have made worse ones!
That is the hardest part, you can never ever known what his response will be or how extreme in any given situation. We were set up for a great night. A night to celebrate David turning 9. A night of fun, presents and hanging with my folks. That was destroyed for me as the tantrum started.
As 3 police cars arrived, Matthew panicked. This time he hadn't known I had called and I think he was afraid and surprised by them. He sat down as they asked, and then they asked that he sit in my car. I asked them to have him sit elsewhere, as Jacob and David really didn't need more stress, but because he is a minor he could not sit in their car to talk, so he sat in my car. Again, I hate that Jacob and David have to dig deep to deal with situations that they should not have to cope with. I hate that they have to see all that they are seeing.
Matthew settled quickly for the police, he assured them that he would be calm and they sent us on our way. The policeman who was here the other day asked about the new school and the medications and I said that the medications were a work in progress and he was struggling at school like at home, but seemed to be adjusting.
Upon coming home, the tantrum continued. Thankfully my parents came to be with the other 2 boys and take them out to dinner. I stayed home with Matthew while he raged. Eventually he had some dinner and settled down and went to bed. He woke up this morning again like life was normal. I am not there.
This cannot be normal, there has to be better. I cannot accept that his is our life. I am going to call Healy house on Monday to see if there is a bed for Matthew. He can go there for 3 weeks and maybe that will buy us all a little more time for the medications to kick in. The new psychiatrist seems to be good and has some new ideas, so that might help.
I know, above all else, that at his heart and soul Matthew is an amazing child who is being challenged by demons. I know that if he had any other illness i would never turn my back on him, and that his brothers would be affected by any illness he had. I know that this morning the 3 boys woke up and they were more ready to be together and have a fresh start than I was and that says something about the fact that they are ok.
I know that I love Matthew with my heart, soul and all of my being and if love is enough we will get through this.
On Saturday, January 19, he had a huge tantrum that ended with Jacob, David and I leaving him with his respite worker while he raged and screamed.
On Monday, January January 21, he had a huge tantrum that resulted in our friend taking the other 2 boys with her in a hurry, and me calling the police for help.
On Friday, January 25 he had a tantrum at school that resulted in him going to the quiet room to calm down.
On Friday, January 25 he had a huge tantrum at home that resulted in me calling the police. In a week's time this is 4 huge tantrums. Tantrums where there was risk for the others involved. Tantrums that his brothers witnessed 3 times. Tantrums that are causing me stress. Tantrums that I know are scaring him and that makes me so sad.
Yesterday we were going out for David's birthday dinner with my parents. After I picked up Jacob, Matthew was touching Jacob's head, making Jacob whine- it is one of the things that Matthew does simply to bother Jacob. When I asked Matthew to stop, he denied that he was doing anything. I again asked him to stop, he again rubbed his head. I again asked him to stop rubbing his head, and he again denied doing it. At my wits end, I told him to get in the car, and told him he had lost the ability to have chocolate milk for dinner.
Why I took away chocolate milk I don't know! It is not a logical consequence, or a natural consequence, but I was tired of being lied to. I was tired of the whining and screaming the minute that Matthew and Jacob get together. I was tired and just wanted to have a nice family dinner and evening. I didn't realize that taking away chocolate milk would lead to such issues. In my mind we would still go to dinner, he would have lemonade or something else, and things would be ok.
However, for Matthew it was different. He started to threaten aggression immediately, and alternately scream that if I gave it back he would stop. I pulled over and hoped to rationalize.....you can't rationalize with someone who is being irrational. I also couldn't give back the chocolate milk. He has to know that I am serious and tantrumming will never, ever get him what he wants. I reminded him he could have lemonade. I reminded him we were still going out for dinner. He couldn't pull it together.
I called my parents to ask them to head towards us rather than meeting them at a restaurant. I then started driving towards home thinking a break would help. We didnt get more than a half mile, before Jacob was scared to be in the car, and I knew we were unsafe with me driving so I pulled into a church. At that point I asked Matthew to get out of the car. He got out, but started punching at Jacob's window and kicking the car. I hate above all else that he is so threatening towards Jacob. To punch at Jacob's window is such an unnecessary position of aggression.
Finally, because I wasn't sure if and when he might break the car window, and he wasn't calming down, I called 911 for help. He was raging and I was scared. The other 2 boys were panic stricken and nothing I could do would help them. I cannot promise them it will stop. I cannot make the screaming stop. I can promise to do my very best to keep them safe, but I don't truly know how long that will all last for. All it would have taken last night was him to hit the window just right and it would have broken. It wouldn't take much.
I was alternating between being panicked that he would hurt his brother, break the car window, or run into the road. There was no way for me to know what to do to keep all of us safe. No parent should feel this struggle and this fear. Especially, because had I known that taking away chocolate milk would have led to this, I never would have taken it away. Often that gets no response, a little disappointment, but no tantrum. All I wanted him to learn was that he has to treat Jacob better and be truthful, I thought a little disappointment would help him learn that. I was a mom who made maybe not the best parenting decision, but certainly all of us have made worse ones!
That is the hardest part, you can never ever known what his response will be or how extreme in any given situation. We were set up for a great night. A night to celebrate David turning 9. A night of fun, presents and hanging with my folks. That was destroyed for me as the tantrum started.
As 3 police cars arrived, Matthew panicked. This time he hadn't known I had called and I think he was afraid and surprised by them. He sat down as they asked, and then they asked that he sit in my car. I asked them to have him sit elsewhere, as Jacob and David really didn't need more stress, but because he is a minor he could not sit in their car to talk, so he sat in my car. Again, I hate that Jacob and David have to dig deep to deal with situations that they should not have to cope with. I hate that they have to see all that they are seeing.
Matthew settled quickly for the police, he assured them that he would be calm and they sent us on our way. The policeman who was here the other day asked about the new school and the medications and I said that the medications were a work in progress and he was struggling at school like at home, but seemed to be adjusting.
Upon coming home, the tantrum continued. Thankfully my parents came to be with the other 2 boys and take them out to dinner. I stayed home with Matthew while he raged. Eventually he had some dinner and settled down and went to bed. He woke up this morning again like life was normal. I am not there.
This cannot be normal, there has to be better. I cannot accept that his is our life. I am going to call Healy house on Monday to see if there is a bed for Matthew. He can go there for 3 weeks and maybe that will buy us all a little more time for the medications to kick in. The new psychiatrist seems to be good and has some new ideas, so that might help.
I know, above all else, that at his heart and soul Matthew is an amazing child who is being challenged by demons. I know that if he had any other illness i would never turn my back on him, and that his brothers would be affected by any illness he had. I know that this morning the 3 boys woke up and they were more ready to be together and have a fresh start than I was and that says something about the fact that they are ok.
I know that I love Matthew with my heart, soul and all of my being and if love is enough we will get through this.
Friday, January 25, 2013
This weeks crazy
I spent a good portion of last night rereading my own blog. It is amazing to read that what was such a big deal only 3 short years ago, would now be a life I would so quickly welcome back.
Three years ago I was upset that Matthew's IEP stated that he was struggling with friendships in his classroom. Now I would welcome the opportunity for someone to tell me he had friendships to struggle with.
Three years ago, I was begging for help as he was starting to be "aggressive". Now I would happily go back to that level of aggression, and we would work through it. I could totally handle him yelling and screaming and name calling if it would stop at that.
Three years ago he had an amazing teacher and a fabulous team. They supported me as he went through his first hospitalization in a psychiatric hospital. They helped me realize that he needed more help than I could offer him at home or that our outpatient psychiatrist could offer him. As he was hospitalized that first time I had hope that there was help, and I had hope that a hospitalization was the answer.
Now I know that hospitalizations are not really the answer. They are a respite, they are an opportunity for a medication change, they are a break, but in reality there are only so many medications and it is highly unlikely that Matthew's brain, due to his brain damage from the in utero alcohol, will respond to any medication.
Three years ago I had hope that these little blips on the radar would affect Matthew and me. I had no understanding of the reality of how these incidents would affect his brothers, how they would affect my entire family or how they would affect those who love us.
When I started this blog, it was a way for me to write what I couldn't talk about. It is still a way for me to express myself, but it has to be something bigger than that. It has to be a way for us to access change. I am reading about more and more families with children like Matthew. What I am struggling with is that my other 2 children, who also have special needs, are never judged based on their needs. No one judges David because he is often unable to express himself. No one judges David when his brain is malfunctioning and he is having seizures.
The world at large encourages me to seek help. The world at large feels sadness for a child affected by a disability in David's brain. I often feel lucky that I am not "judged" by Matthew's behavior. As I am reading more and more blogs, I realize that we are a very lucky family. So many family's are treated horribly when they have children with mental illness. People assume it is due to poor discipline. They assume it is due to a lack of instruction from parents to the child about how the child should act.
I challenge anyone who has a thought about how to better parent a child with mental illness to parent one for a month. You will see that time outs don't work. That you are walking on egg shells, never quite sure when the bomb will explode. You will see that what works one day to redirect the child will not work the next.
You will see that you are exhausted. You will see that there is little help. You will see that you are powerless, and worse than that, your child is powerless in their illness. I challenge you to stop judging and start helping.
I am always thankful and will always be thankful that in our moments of stress there are moments of hysterical. Yesterday I was woken up to Matthew telling me he had used my razor to shave in the shower. I panicked as to what he could have possibly shaved. He came out to me and he still had a full head of hair. He bragged with pride that he had shaved his entire body....yes, you read that right, I said his entire puberty filled body! And worse, he had used MY razor!
As life gets crazy, I try to remember that there is always time for laughter! The reality that he shaved his private area has had me laughing for 24 hours, and hopefully will take me through the next challenge.
He has started a new school, and so far I am thrilled with the communication from his teacher. I need people to be open and honest with me. She has been very truthful in her communication to me. She is not pretending that things are perfect, I completely appreciate that as it matches my reality. She is holding him accountable for his actions even as a new student. I have hope that this school will work and he seems happy. I am sad that he is in a class with 4 students and 5 adults, but if this provides him with success, then life for all of us will be easier!
Three years ago I was upset that Matthew's IEP stated that he was struggling with friendships in his classroom. Now I would welcome the opportunity for someone to tell me he had friendships to struggle with.
Three years ago, I was begging for help as he was starting to be "aggressive". Now I would happily go back to that level of aggression, and we would work through it. I could totally handle him yelling and screaming and name calling if it would stop at that.
Three years ago he had an amazing teacher and a fabulous team. They supported me as he went through his first hospitalization in a psychiatric hospital. They helped me realize that he needed more help than I could offer him at home or that our outpatient psychiatrist could offer him. As he was hospitalized that first time I had hope that there was help, and I had hope that a hospitalization was the answer.
Now I know that hospitalizations are not really the answer. They are a respite, they are an opportunity for a medication change, they are a break, but in reality there are only so many medications and it is highly unlikely that Matthew's brain, due to his brain damage from the in utero alcohol, will respond to any medication.
Three years ago I had hope that these little blips on the radar would affect Matthew and me. I had no understanding of the reality of how these incidents would affect his brothers, how they would affect my entire family or how they would affect those who love us.
When I started this blog, it was a way for me to write what I couldn't talk about. It is still a way for me to express myself, but it has to be something bigger than that. It has to be a way for us to access change. I am reading about more and more families with children like Matthew. What I am struggling with is that my other 2 children, who also have special needs, are never judged based on their needs. No one judges David because he is often unable to express himself. No one judges David when his brain is malfunctioning and he is having seizures.
The world at large encourages me to seek help. The world at large feels sadness for a child affected by a disability in David's brain. I often feel lucky that I am not "judged" by Matthew's behavior. As I am reading more and more blogs, I realize that we are a very lucky family. So many family's are treated horribly when they have children with mental illness. People assume it is due to poor discipline. They assume it is due to a lack of instruction from parents to the child about how the child should act.
I challenge anyone who has a thought about how to better parent a child with mental illness to parent one for a month. You will see that time outs don't work. That you are walking on egg shells, never quite sure when the bomb will explode. You will see that what works one day to redirect the child will not work the next.
You will see that you are exhausted. You will see that there is little help. You will see that you are powerless, and worse than that, your child is powerless in their illness. I challenge you to stop judging and start helping.
I am always thankful and will always be thankful that in our moments of stress there are moments of hysterical. Yesterday I was woken up to Matthew telling me he had used my razor to shave in the shower. I panicked as to what he could have possibly shaved. He came out to me and he still had a full head of hair. He bragged with pride that he had shaved his entire body....yes, you read that right, I said his entire puberty filled body! And worse, he had used MY razor!
As life gets crazy, I try to remember that there is always time for laughter! The reality that he shaved his private area has had me laughing for 24 hours, and hopefully will take me through the next challenge.
He has started a new school, and so far I am thrilled with the communication from his teacher. I need people to be open and honest with me. She has been very truthful in her communication to me. She is not pretending that things are perfect, I completely appreciate that as it matches my reality. She is holding him accountable for his actions even as a new student. I have hope that this school will work and he seems happy. I am sad that he is in a class with 4 students and 5 adults, but if this provides him with success, then life for all of us will be easier!
Wednesday, January 23, 2013
i've made a few decisions
Anyone who knows me well knows that I have always like to read non fiction stories. As the mom of 3 children with special needs, reading non fiction has always been a good way for me to read stories of people who are living through life's challenges and surviving them.
There is the mom with 3 children on the autistic spectrum. She is living and thriving.
The mom with 3 children who are blind, deaf and nonverbal, they are all thriving, and she even found an amazing man to marry her and take on being the father to these 3 girls.
Each of these stories has provided me comfort on hard days. They have given me a reason to keep going and reminded me that life is full of challenges for all of us.
I have made the decision to be open about our story. My goal is that this blog is not just a blog for my friends and family, but that maybe it can also be a blog that tells the story of a family who struggle and overcome challenges. Maybe it can be a blog that helps other families. Maybe this blog can be the blog that helps those in power realize that our system doesn't work.
We live in a suburb near Albany, NY. It is a middle to upper middle class area, with a fabulous school district. Just yesterday, while the police were at the house helping Matthew, I asked how often they get calls like this to help with a child who is out of control. I was feeling like we had to be a rarity in our area, and I was a touch embarrassed. To my surprise, the police said they deal with calls like this daily, even multiple times a day. This is shocking!
What is even more shocking is that in dealing with this multiple times a day, they still have no suggestions.
What we need are more temporary beds for children in crisis. Beds that are actually available in an emergency. We need beds in places where doctors can be available to provide medication adjustment. We need beds where children can stay until children and families are truly stabilized. We need doctors, along with families, to be the ones who determine that a child is stable.
We need more respite providers. Providers who work during the times that families are in need. Providers who are trained to work with challenging children. Providers who will commit to these children for a length of time that allows them to build relationships and also feel comfortable that their intense behaviors will not cause the provider to leave.
We need people in our education system who understand the limits to the mental health system. Who understand that families in crisis need help. We need those in our education system to have access to information to share with families that is accurate and helpful.
We need psychiatrists who have time to meet with patients and who understand the challenges of children with mental health issues. We need these psychiatrists to have more than 10 minutes to spend with a family at each visit. We need these psychiatrists to be a partner with parents in care for the child. We need them to understand that a mental health illness for a child has a huge impact on all aspects of the family.
The most frustrating thing to a family in crisis is for people to suggest they do X or Y and Z and they waste time doing X, Y and Z only to learn that there is no help available. We need there to be the same easy access for mental health care as there is for any other illness.
If your child has epilepsy, you see a neurologist. If your child has cancer you see an oncologist. If your child has arthritis, you see a rhuematologist. While you may have to look for the right "ist" doctor who meets the needs of your family, at least you know that you can find a doctor and the doctor can provide the full course of treatment your child needs.
I am going to ask that anyone who reads this blog forwards it to someone else. Matthew is an amazingly loving child. He charms everyone who meets him. He is not some monster. He is a child in need, who deserves to have help. He deserves to have a mom who can find him help and not constantly bang into brick walls.
Autism became a better studied and more well known disorder when people finally stood up and said it was "ENOUGH". Finally money was ear marked for autism, therapies were tested and now there are many main stream opportunities for children with autism to participate in. Most school districts have classes that are created for children with autism, that help the children mainstream and work on social skills.
Parkinson's disease became more well known when Michael J Fox was sadly diagnosed with Parkinson's disease. It takes money to study a medical disorder. It takes a spokesperson, it takes a voice, to raise awareness.
Unfortunately, most families who are dealing with mental health issues of a child are overwhelmed. They are constantly walking on egg shells. They are anxious about what will cause the next explosion. They are balancing life, working hard to ensure that when the child with mental health issues is calm, the other children in the family get some time and attention.
I am lucky. I have a fabulous family, and an amazing network of friends. I have found an outlet for my guilt and anxieties in this blog and now I have discovered that people are reading and listening. What we have to do now is get more people to read and listen. Forward this blog address to someone now who can help us take action. Maybe you know a psychiatrist. Maybe you know a mental health worker. Maybe you know a politician. We all know somone! Please help not only for Matthew but for all of the other Matthew's out there who do not yet have a voice.
I have made the decision to go public with our story. To go public with our challenges and to put ourselves out for the world to see. I want to make sure that Matthew gets help now while he still can be helped. I want him to get help before he becomes known for something horrific! We need to put the resources into helping families now before it is too late and we are just managing the behavior of these children while their lives are wasted in jail. Jails and prisons are currently filled with men and women with mental health issues and Fetal Alcohol Syndrome among other disorders. Maybe together we can keep the next generation of people out of jail and prison, if we work together.
There is the mom with 3 children on the autistic spectrum. She is living and thriving.
The mom with 3 children who are blind, deaf and nonverbal, they are all thriving, and she even found an amazing man to marry her and take on being the father to these 3 girls.
Each of these stories has provided me comfort on hard days. They have given me a reason to keep going and reminded me that life is full of challenges for all of us.
I have made the decision to be open about our story. My goal is that this blog is not just a blog for my friends and family, but that maybe it can also be a blog that tells the story of a family who struggle and overcome challenges. Maybe it can be a blog that helps other families. Maybe this blog can be the blog that helps those in power realize that our system doesn't work.
We live in a suburb near Albany, NY. It is a middle to upper middle class area, with a fabulous school district. Just yesterday, while the police were at the house helping Matthew, I asked how often they get calls like this to help with a child who is out of control. I was feeling like we had to be a rarity in our area, and I was a touch embarrassed. To my surprise, the police said they deal with calls like this daily, even multiple times a day. This is shocking!
What is even more shocking is that in dealing with this multiple times a day, they still have no suggestions.
What we need are more temporary beds for children in crisis. Beds that are actually available in an emergency. We need beds in places where doctors can be available to provide medication adjustment. We need beds where children can stay until children and families are truly stabilized. We need doctors, along with families, to be the ones who determine that a child is stable.
We need more respite providers. Providers who work during the times that families are in need. Providers who are trained to work with challenging children. Providers who will commit to these children for a length of time that allows them to build relationships and also feel comfortable that their intense behaviors will not cause the provider to leave.
We need people in our education system who understand the limits to the mental health system. Who understand that families in crisis need help. We need those in our education system to have access to information to share with families that is accurate and helpful.
We need psychiatrists who have time to meet with patients and who understand the challenges of children with mental health issues. We need these psychiatrists to have more than 10 minutes to spend with a family at each visit. We need these psychiatrists to be a partner with parents in care for the child. We need them to understand that a mental health illness for a child has a huge impact on all aspects of the family.
The most frustrating thing to a family in crisis is for people to suggest they do X or Y and Z and they waste time doing X, Y and Z only to learn that there is no help available. We need there to be the same easy access for mental health care as there is for any other illness.
If your child has epilepsy, you see a neurologist. If your child has cancer you see an oncologist. If your child has arthritis, you see a rhuematologist. While you may have to look for the right "ist" doctor who meets the needs of your family, at least you know that you can find a doctor and the doctor can provide the full course of treatment your child needs.
I am going to ask that anyone who reads this blog forwards it to someone else. Matthew is an amazingly loving child. He charms everyone who meets him. He is not some monster. He is a child in need, who deserves to have help. He deserves to have a mom who can find him help and not constantly bang into brick walls.
Autism became a better studied and more well known disorder when people finally stood up and said it was "ENOUGH". Finally money was ear marked for autism, therapies were tested and now there are many main stream opportunities for children with autism to participate in. Most school districts have classes that are created for children with autism, that help the children mainstream and work on social skills.
Parkinson's disease became more well known when Michael J Fox was sadly diagnosed with Parkinson's disease. It takes money to study a medical disorder. It takes a spokesperson, it takes a voice, to raise awareness.
Unfortunately, most families who are dealing with mental health issues of a child are overwhelmed. They are constantly walking on egg shells. They are anxious about what will cause the next explosion. They are balancing life, working hard to ensure that when the child with mental health issues is calm, the other children in the family get some time and attention.
I am lucky. I have a fabulous family, and an amazing network of friends. I have found an outlet for my guilt and anxieties in this blog and now I have discovered that people are reading and listening. What we have to do now is get more people to read and listen. Forward this blog address to someone now who can help us take action. Maybe you know a psychiatrist. Maybe you know a mental health worker. Maybe you know a politician. We all know somone! Please help not only for Matthew but for all of the other Matthew's out there who do not yet have a voice.
I have made the decision to go public with our story. To go public with our challenges and to put ourselves out for the world to see. I want to make sure that Matthew gets help now while he still can be helped. I want him to get help before he becomes known for something horrific! We need to put the resources into helping families now before it is too late and we are just managing the behavior of these children while their lives are wasted in jail. Jails and prisons are currently filled with men and women with mental health issues and Fetal Alcohol Syndrome among other disorders. Maybe together we can keep the next generation of people out of jail and prison, if we work together.
Monday, January 21, 2013
you have to pick and choose your battles
There was a time in my life where I could not have imagined anything that could happen within my family that would have me calling the police.
There was a time in my life where I could not imagine calling the police on my own 11 year old child.
There was a time in my life where I could not imagine knowing the name of a police officer who could come to my house and would know my son.
There was a time in my life where if I had to imagine calling the police on my son I would have assumed that would be the worst day of my life.
Sadly, today I learned that calling the police on my son does not make it the worst day of my life. It sadly was just a blip on the radar. Kind of like, what is our plan for the day? We are going to get up, have breakfast, go to a few appointments, come home, play, Matthew will get angry, I will call the police and then we will go to karate.
It is just another thing that is becoming "normalized" for me. When you are raising a child with mental health issues, this is sadly just something that becomes par for the course.
Jacob was having a playdate today and as the time for the playdate got closer, Matthew became more and more on edge. I was hopeful that he would settle in, but as the playdate started, it became clear that this was not going to be the case. As the little guys started playing first, Matthew started trying to play with them. Jacob quickly got upset and I suggested that Matthew try playing in another room. He did an awesome job at first, he settled into playing music on the computer and seemed to become calmer. Then, after being on the computer for a little while, Matthew went upstairs. He came down carrying a toy that shoots out balls, that I knew Jacob would not want Matthew using. I told Matthew he had to put it away.
That simple sentence was the beginning of the battle.
After that he ranted and raged. He threw a bottle of lotion down the stairs, he screamed, he punched, he raged. It got to the point that I was embarrassed to have another family here and I also knew that it was too much for the younger boys to be around, so I asked the other parent to please take her son and my two to her house. As they were leaving, Matthew was screaming to go with them.
After they left, I tried to give him space but he kept on raging. He would come close and threaten me, he was so angry and full of rage that it was almost like he couldn't see straight. This is the problem, my son, in his right mind, is the calmest, gentlest soul. However, when his rage takes over, he is out of control.
My biggest fear is that in a rage he will hurt someone and he will have to live with the consequences of that.
As the rage continued, I was at the point that I didn't know what else to do. I felt like he was too out of control, and I was unable to calm him down by talking to him. Giving him space hadn't helped the situation. Finally, after he threw a few shoes at me and tried to throw other things, I called 911 hoping that they could help. He had taken his emergency medication, which is supposed to help calm him, and it didnt seem to be working and I felt like just another pair of hands, and another voice could help settle down the situation.
The police arrived and I filled them in on what was going on. They were wonderful. They listened, they offered no new advice, but mostly just reiterated what I already knew....there is no support in the system. They could call the mobile crisis unit, but all they would do would be to come and see a now calm Matthew. They reiterated to Matthew that the behavior was unacceptable and inappropriate....blah, blah, blah.
As they were doing paperwork I told Matthew he had to clean up the mess that he made and he happily did so. See, he had returned to a calm state. For him, it was over, the situation had ended. He was calm. Now the problem is, I was NOT calm! I was sad, I was hurt, I was frustrated. I had just wanted a playdate. I wanted time to hang with another mom while our boys played together.
As the police were leaving they commented that they see many calls a week just like ours. Children with mental health issues who are struggling and they are frustrated that they have no answers.
The police also suggested that I "choose my battles". What he doesn't know is that I did choose my battles! I have decided purposely that I will always hold Matthew to a high standard. The toy that he wanted was not an appropriate one to play with for many reasons. It was not his. It was not a play date toy. It was not a toy he had asked to use.
If I don't have a high standard for my son, I am creating a false reality for him. You see, the world will have a high standard for him. Regardless of what his limitations are, the world will expect him to play by the rules of his community, therefor, I am expecting the same. I expect that he will ask before taking. I expect that he will put things away if they are not his. I expect that he will always listen to the authority figures in his life.
We are ok. He is ok. Likely after today he will again have many good days, that seems to be our current cycle. It is a matter of me constantly remembering that all of the things that are going on are often not in his control. Today he was crying for help. Friday we will see a new psychiatrist. Hopefully the new Dr will help me to help Matthew. Hopefully he will have fresh ideas and thoughts so that the good days will become more frequent.
There was a time in my life where I could not imagine calling the police on my own 11 year old child.
There was a time in my life where I could not imagine knowing the name of a police officer who could come to my house and would know my son.
There was a time in my life where if I had to imagine calling the police on my son I would have assumed that would be the worst day of my life.
Sadly, today I learned that calling the police on my son does not make it the worst day of my life. It sadly was just a blip on the radar. Kind of like, what is our plan for the day? We are going to get up, have breakfast, go to a few appointments, come home, play, Matthew will get angry, I will call the police and then we will go to karate.
It is just another thing that is becoming "normalized" for me. When you are raising a child with mental health issues, this is sadly just something that becomes par for the course.
Jacob was having a playdate today and as the time for the playdate got closer, Matthew became more and more on edge. I was hopeful that he would settle in, but as the playdate started, it became clear that this was not going to be the case. As the little guys started playing first, Matthew started trying to play with them. Jacob quickly got upset and I suggested that Matthew try playing in another room. He did an awesome job at first, he settled into playing music on the computer and seemed to become calmer. Then, after being on the computer for a little while, Matthew went upstairs. He came down carrying a toy that shoots out balls, that I knew Jacob would not want Matthew using. I told Matthew he had to put it away.
That simple sentence was the beginning of the battle.
After that he ranted and raged. He threw a bottle of lotion down the stairs, he screamed, he punched, he raged. It got to the point that I was embarrassed to have another family here and I also knew that it was too much for the younger boys to be around, so I asked the other parent to please take her son and my two to her house. As they were leaving, Matthew was screaming to go with them.
After they left, I tried to give him space but he kept on raging. He would come close and threaten me, he was so angry and full of rage that it was almost like he couldn't see straight. This is the problem, my son, in his right mind, is the calmest, gentlest soul. However, when his rage takes over, he is out of control.
My biggest fear is that in a rage he will hurt someone and he will have to live with the consequences of that.
As the rage continued, I was at the point that I didn't know what else to do. I felt like he was too out of control, and I was unable to calm him down by talking to him. Giving him space hadn't helped the situation. Finally, after he threw a few shoes at me and tried to throw other things, I called 911 hoping that they could help. He had taken his emergency medication, which is supposed to help calm him, and it didnt seem to be working and I felt like just another pair of hands, and another voice could help settle down the situation.
The police arrived and I filled them in on what was going on. They were wonderful. They listened, they offered no new advice, but mostly just reiterated what I already knew....there is no support in the system. They could call the mobile crisis unit, but all they would do would be to come and see a now calm Matthew. They reiterated to Matthew that the behavior was unacceptable and inappropriate....blah, blah, blah.
As they were doing paperwork I told Matthew he had to clean up the mess that he made and he happily did so. See, he had returned to a calm state. For him, it was over, the situation had ended. He was calm. Now the problem is, I was NOT calm! I was sad, I was hurt, I was frustrated. I had just wanted a playdate. I wanted time to hang with another mom while our boys played together.
As the police were leaving they commented that they see many calls a week just like ours. Children with mental health issues who are struggling and they are frustrated that they have no answers.
The police also suggested that I "choose my battles". What he doesn't know is that I did choose my battles! I have decided purposely that I will always hold Matthew to a high standard. The toy that he wanted was not an appropriate one to play with for many reasons. It was not his. It was not a play date toy. It was not a toy he had asked to use.
If I don't have a high standard for my son, I am creating a false reality for him. You see, the world will have a high standard for him. Regardless of what his limitations are, the world will expect him to play by the rules of his community, therefor, I am expecting the same. I expect that he will ask before taking. I expect that he will put things away if they are not his. I expect that he will always listen to the authority figures in his life.
We are ok. He is ok. Likely after today he will again have many good days, that seems to be our current cycle. It is a matter of me constantly remembering that all of the things that are going on are often not in his control. Today he was crying for help. Friday we will see a new psychiatrist. Hopefully the new Dr will help me to help Matthew. Hopefully he will have fresh ideas and thoughts so that the good days will become more frequent.
Saturday, January 19, 2013
Reality Stinks
I hate the cycle of our life......When Matthew is struggling, really strugling, I am often at my best. I see my boy in so much pain, and I know that I am the one that has to keep it togethr, so I do. I may cry for him at night, but I know that he is in pain, and so I have to be his cheerleader and his advocate.
Then when he is in the hospital, my plate is full. I have to give my time to the other 2 boys, monitor all that is going on in the hospital, cheerlead for Matthew in the hospital and try to connect with him no matter how he is doing.
As Matthew is being discharged from the hospital I have to worry about his reentry into the family. Will everyone get along? Will they all be ok? Have I given them each time and attention to make the reentry successful? Is school ready for Matthew's return?
Then, after a few days we are back in the groove and life and I crash. Today I have crashed. I am mad. Really, really mad. Not at anyone in particulr, (unless you are a human who is breathing around me, or someone who is demanding something of me and my time).....
I am mad at our situation. I am mad at our lives.
I am tired....bone tired. I am tired of coming downstairs every single morning to the same insanity. I walk down the steps and matthew either yells to me "I haven't eaten anything yet", which is always, always, always a lie or "can I have breakfast.". He has ALWAYS, ALWAYS, ALWAYS already eaten. He has likely already eaten more than any human should eat in a day. Now it is up to me to determine what he has eaten so that I can determine what else he may need to eat in the morning or for lunch.
The definition of insanity is doing the same thing over and over again when it doesn't work. I am at the point right now where I could live in my bed just to avoid the first steps down the stairs every single morning. It is a horrible, horrible start to every single day.
I have tried leaving out food- he eats that and scavenges for more.
i have tried leaving out NO food- he will eat dry pancake mix
I have tried getting up with him- he gets up anywhere between 5 and 7:30- I can't get up that early just to lie in wait for him.
I have tried to get him not to talk to me in the morning- he talks anyways.
I have tried to just not care- I can't figure out how to not care when he is not being honest- I am his mom, I care.
I am tired- I have spent since New Years Eve Day caring for my son who was in crisis. Today I have nothing left to give. I could lay on the floor and tantrum. I could fall apart right now. I am a yelling, screaming angry mom today, and I hate myself for that. I hate yelling when likely they have as little control over themselves as I have over me. The more I am angry, the more they are fighting. We are stuck in a bad cycle today. I am hoping to hit our reset button, and have everyone rest. I am hoping that will make me less tired and will give me the strength to get through today.
I hate this cycle! Today I hate this part of our lives. I know that I will be up for the fight again soon, but for today, I am waving my white flag.
Then when he is in the hospital, my plate is full. I have to give my time to the other 2 boys, monitor all that is going on in the hospital, cheerlead for Matthew in the hospital and try to connect with him no matter how he is doing.
As Matthew is being discharged from the hospital I have to worry about his reentry into the family. Will everyone get along? Will they all be ok? Have I given them each time and attention to make the reentry successful? Is school ready for Matthew's return?
Then, after a few days we are back in the groove and life and I crash. Today I have crashed. I am mad. Really, really mad. Not at anyone in particulr, (unless you are a human who is breathing around me, or someone who is demanding something of me and my time).....
I am mad at our situation. I am mad at our lives.
I am tired....bone tired. I am tired of coming downstairs every single morning to the same insanity. I walk down the steps and matthew either yells to me "I haven't eaten anything yet", which is always, always, always a lie or "can I have breakfast.". He has ALWAYS, ALWAYS, ALWAYS already eaten. He has likely already eaten more than any human should eat in a day. Now it is up to me to determine what he has eaten so that I can determine what else he may need to eat in the morning or for lunch.
The definition of insanity is doing the same thing over and over again when it doesn't work. I am at the point right now where I could live in my bed just to avoid the first steps down the stairs every single morning. It is a horrible, horrible start to every single day.
I have tried leaving out food- he eats that and scavenges for more.
i have tried leaving out NO food- he will eat dry pancake mix
I have tried getting up with him- he gets up anywhere between 5 and 7:30- I can't get up that early just to lie in wait for him.
I have tried to get him not to talk to me in the morning- he talks anyways.
I have tried to just not care- I can't figure out how to not care when he is not being honest- I am his mom, I care.
I am tired- I have spent since New Years Eve Day caring for my son who was in crisis. Today I have nothing left to give. I could lay on the floor and tantrum. I could fall apart right now. I am a yelling, screaming angry mom today, and I hate myself for that. I hate yelling when likely they have as little control over themselves as I have over me. The more I am angry, the more they are fighting. We are stuck in a bad cycle today. I am hoping to hit our reset button, and have everyone rest. I am hoping that will make me less tired and will give me the strength to get through today.
I hate this cycle! Today I hate this part of our lives. I know that I will be up for the fight again soon, but for today, I am waving my white flag.
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