I opened a can of worms with my last post, and if our family is going to be a vehicle for change, I feel like I have to share the rest of our story.
Yesterday Matthew attended a great camp program for children with special needs. This program keeps him busy, which he loves, and allows me and the other boys some time to do errands and connect with each other. While the boys and I were out, I received a phone call that 4 Winds had a bed available for matthew, but it was on a unit with 13-18 year olds. You know that life is bad when you have the option of getting help for your child, but in a place that may be more unsafe for him than home. Because of Matthew's disabilities he is 11 but acts like he is 5. One would never put a 5 year old on a unit with 13-18 year olds. Was I right to turn down that bed? Was I over thinking it? What would he learn from 18 year olds in a psychiatric hospital? Would he get hurt?
I was unaware that Matthew had been reporting to the staff that he had been stealing a lot, and when I had tried to talk to the staff in the morning about it to get some help, they had been busy, so I figured I would just talk to them at pick up time.
When I came to pick Matthew up, the director came to see me and filled me in that she and Matthew had made a plan to help him have good behavior at home that night at our New Years Eve Party and to help with his stealing. She reported to me that they had gone sledding for the day and had gone to the dollar store to pick up a toy for the program and Matthew and she were telling me all about what they bought and sledding when I saw the telling bulge in his pants pocket. As I asked him what was in his pocket he quickly got upset. He threw himself to the ground and denied anything was in his pocket.
I reached in his pocket and it was filled with candy from the dollar store. Matthew started to rage- throwing shoes at me, kicking, screaming, cursing, out of control. The director and I tried to calm him, but he was uncalmable. he knew at this point that the New Years Eve Party would not be an option for him, and he was not able to move forward.
The director and I left the office thinking that we could give him some space, and he raged after us, throwing things, yelling, screaming, scaring the other kids. The other staff and I took the other kids and D and J to another room while Matthew raged with the director. After 10 minutes the director called, she could not get him to calm down and he was a danger to himself and to her, she was recommending calling the police and the mobile crisis team, I told her to do whatever was needed.
All of this time David and Jacob, other kids and I were coloring, but we were able to hear what was going on, for Jacob, David and I this was torture. Jacob saw the police come into the building on the tv screen and his panic increased. My heart sunk to my stomach. I was being asked to stay out of the room where matthew was for fear that he would get more angry at me. I was torn between being with David and Jacob and offering them whatever comfort I could and being with my Matthew- my poor Matthew who is so lost in his own head that he had no control. He spit at the police, he threatened the police. He lunged at the police, the police took him down to the ground. I will be forever grateful that I didn't have to watch my baby be taken down by the police.
After about 30 minutes my father came to get my other boys and I was told I could come back upstairs where Matthew was. He was calm and the police were ready to call off the mobile crisis team. The director did not want mobile crisis called off for fear that Matthew would get upset again, and I agreed they should still come. I went upstairs and found a manic matthew. Chatting with the police about what was for dinner. Asking about their uniforms. Unaware of the drama his behavior had on so many around him. The staff from mobile crisis came and talked to the police and then talked to the director and me and then talked to Matthew.
The mobile crisis team was determined to help.....
Was there a bed at 4 winds? I told them no, just the one on the teen floor, which they and the director immediately thought was a bad idea.
Had I called his psychiatrist? I had, she saw no reason for a med change on New Years Eve.
They called Healy house, a short term respite program. Was there a bed? NO.
There is a hospital 2 hours from home, there may be a bed, but now he was calm. Did that make sense? no one really thought so.
He could go to the Emergency room. They would give us a place to stay for the night. He could sleep there and I could sleep in a chair next to him. Did that make sense? NO
The mobile crisis team acknowledged that we needed help, but in the end realized there is no help. I thought maybe they could at least call the hospital and get us higher on the waiting list, but they can't do that. They recommended counseling but agree that for kids with Fetal Alcohol counseling is not really the most helpful thing. You see, Matthew knows what he did was wrong, he told us all about it, in a flat, detached manner. As if he had watched it on tv. But in the moment, right and wrong don't matter. He can't control himself. He is like a different person. Totally detached.
I am going to look for a counselor for Jacob, David and I, the boys need someone to talk to so that they feel safe. Hopefully that person can help on some level with Matthew. I am going to keep my fingers crossed that the 3 week wait that I was told was likely at 4 Winds ends up being wrong. I am going to tighten our support group so that if we need help, I can call multiple people and someone can come get David and jacob quickly.
I am going to do my best to keep the house calm, that should help Matthew. I am going to hope that my families story is a vehicle for change.
You should never be in a place where you feel your son needs help and there is no help available. There should never be too many kids who need help and not enough beds. We need more options.
They say that if you put all of your problems and everyone else's problems in a pile we would all take our own problems back. Last night, I wasn't so sure. Today I am more determined to be a voice for those with mental illness. I will tell our story, we will make change. Please help me get our story told to those who can make a difference for all of the Matthew's of the world.
Tuesday, January 1, 2013
Sunday, December 30, 2012
When there are no beds at the Psychiatric Hospital
We have been home on vacation this week and we have ridden quite a crazy roller coaster. At the beginning of break I felt like things were going actually better than they had been going during the school year, however now I am having to face the reality that things can't be qualified as better or worse, but actually just different.
Matthew's behaviors have become more extreme and more concerning:
1. He stole $19 worth of candy at a store when we were shopping. Now many have said, "all kids do this"however for Matthew it is different.
** he does not understand that taking things is wrong
** no consequence I have imposed has had an effect on him
** his response to going back to the store and paying for the candy was, "it's ok, they gave me money back".
You can't teach money concepts to a child who doesn't understand it. To him the $19 was equivalent to the $1 bill he received as change. It is all made of paper, all green and essentially all the same. We have talked about money for years, we have spent money together, we have talked about what he can afford and can't afford when he has a certain amount to spend. He can do this all with anyone, but he doesn't see a difference between a $3 skateboard toy and a $30 skateboard so he does not understand the value of items and he doesn't actually value them differently.
2. He is threatening his brothers. This is the worst thing for me as a mom. It is hard to see Matthew so upset that he starts talking about hitting his brothers. It is harder still to see his brother so scared. There is nothing I can do to make it better for them in the moment. When things got really bad on Saturday night I had a friend come pick up J and D, but that still causes them stress and trauma. They still were here for the beginning of the intensity and they worry when they leave with a friend about what is happening when they are gone.
3. He stole food at his grandparents house today. All he has to do is ask for food and he can have something. Sure, sometimes he is offered just a piece of fruit, but that is still something and if he is hungry, he will eat it. He took handfuls full of crackers at his grandparents and shoved them in his pockets. When we found them he screamed, he cried, he yelled, he denied, and he tantrummed. Finally, the truth came out and he was so upset.
In many ways I know that for him to have taken food from his grandparents, the problem is beyond his abilities. It is all he thinks about. All day and all night he is obsessing about food.
That said, no matter how much you obsess, you can't just take what you want. You have to ask. He has to check in with an adult. Yet in this house with 2 adults who know everything that is going on, he managed to get to the crackers and shove them in his pocket and lay on the couch eating some.
For me it was reassuring that even 2 people cannot always monitor Matthew. It was also a sad, sad reality. He is typically on his best behavior at my parents house because he wants to make them happy. To see that today he couldn't even keep it together at their house says things are getting bad quickly.
4. Another one of Matthew's obsessions is cigarettes. Yesterday Matthew was at Target with his respite provider and he said he had to go to the bathroom. He went into the bathroom and apparently found someone with a cigarette in their mouth. Apparently while the man was using the urinal Matthew told him he shouldn't smoke. You can imagine how well this went over, especially given that this man was not totally stable himself. The many yelled at Matthew and Matthew quickly ran from the bathroom.
This raises more issues- he is an 11 year old boy, he has to be able to use the boys bathroom. However, in the boys bathroom there is no one to monitor him and he cannot take care of himself. In this case, how is he safe? He isn't. And again, with the respite staff it was just 1:1, there were no other kids to take care of and yet he still struggled.
I decided after the tantrum Friday, Saturday and today that Matthew is not safe at home. This is the hardest decision a parent of a child has to make. There is no line in the sand that says, "yep, this is when your child needs to be hospitalized". It is a gut feeling. It is the feeling for me that my other boys are struggling too much. It is Jacob's need to not leave my side. It is Jacob crying, and David getting quieter. It is Jacob chewing on his sleeves, and David picking his fingers. It is my own feeling that without help we may not get through the night without a tantrum.
So I worked up my nerve and I called 4 Winds hospital. I was ready to take Matthew tonight. We need help, my boy is screaming for help......and there are no beds.....there may be a bed tomorrow, but there may not. Who knows how long it will take until there is a bed? How long do we wait?
Are we safe to wait? I will make us safe....I will call for help. I will set up playdates for the younger boys. I will schedule breaks and we will do our best. But, if you needed any other kind of medical help, you would go to the ER and there would be help. There is no ER to go to. There is no help. Our system is broken, when a little 11 year old boy is in need of help and there is simply no help for him!
I am sharing our story because we have to have a change. Mental health needs have got to become a priority for our country. My son did nothing wrong to deserve his struggles, and on the right meds he may be healthier. If any of you, know anyone, or know someone who knows someone, please speak up. We have to make caring for those with mental health needs a focus so more parents can hit bottom, and make that call to the psyciatric hospital and get their child help, rather than coming home and worrying how many days, weeks, or months it will be before a bed is available.
Matthew's behaviors have become more extreme and more concerning:
1. He stole $19 worth of candy at a store when we were shopping. Now many have said, "all kids do this"however for Matthew it is different.
** he does not understand that taking things is wrong
** no consequence I have imposed has had an effect on him
** his response to going back to the store and paying for the candy was, "it's ok, they gave me money back".
You can't teach money concepts to a child who doesn't understand it. To him the $19 was equivalent to the $1 bill he received as change. It is all made of paper, all green and essentially all the same. We have talked about money for years, we have spent money together, we have talked about what he can afford and can't afford when he has a certain amount to spend. He can do this all with anyone, but he doesn't see a difference between a $3 skateboard toy and a $30 skateboard so he does not understand the value of items and he doesn't actually value them differently.
2. He is threatening his brothers. This is the worst thing for me as a mom. It is hard to see Matthew so upset that he starts talking about hitting his brothers. It is harder still to see his brother so scared. There is nothing I can do to make it better for them in the moment. When things got really bad on Saturday night I had a friend come pick up J and D, but that still causes them stress and trauma. They still were here for the beginning of the intensity and they worry when they leave with a friend about what is happening when they are gone.
3. He stole food at his grandparents house today. All he has to do is ask for food and he can have something. Sure, sometimes he is offered just a piece of fruit, but that is still something and if he is hungry, he will eat it. He took handfuls full of crackers at his grandparents and shoved them in his pockets. When we found them he screamed, he cried, he yelled, he denied, and he tantrummed. Finally, the truth came out and he was so upset.
In many ways I know that for him to have taken food from his grandparents, the problem is beyond his abilities. It is all he thinks about. All day and all night he is obsessing about food.
That said, no matter how much you obsess, you can't just take what you want. You have to ask. He has to check in with an adult. Yet in this house with 2 adults who know everything that is going on, he managed to get to the crackers and shove them in his pocket and lay on the couch eating some.
For me it was reassuring that even 2 people cannot always monitor Matthew. It was also a sad, sad reality. He is typically on his best behavior at my parents house because he wants to make them happy. To see that today he couldn't even keep it together at their house says things are getting bad quickly.
4. Another one of Matthew's obsessions is cigarettes. Yesterday Matthew was at Target with his respite provider and he said he had to go to the bathroom. He went into the bathroom and apparently found someone with a cigarette in their mouth. Apparently while the man was using the urinal Matthew told him he shouldn't smoke. You can imagine how well this went over, especially given that this man was not totally stable himself. The many yelled at Matthew and Matthew quickly ran from the bathroom.
This raises more issues- he is an 11 year old boy, he has to be able to use the boys bathroom. However, in the boys bathroom there is no one to monitor him and he cannot take care of himself. In this case, how is he safe? He isn't. And again, with the respite staff it was just 1:1, there were no other kids to take care of and yet he still struggled.
I decided after the tantrum Friday, Saturday and today that Matthew is not safe at home. This is the hardest decision a parent of a child has to make. There is no line in the sand that says, "yep, this is when your child needs to be hospitalized". It is a gut feeling. It is the feeling for me that my other boys are struggling too much. It is Jacob's need to not leave my side. It is Jacob crying, and David getting quieter. It is Jacob chewing on his sleeves, and David picking his fingers. It is my own feeling that without help we may not get through the night without a tantrum.
So I worked up my nerve and I called 4 Winds hospital. I was ready to take Matthew tonight. We need help, my boy is screaming for help......and there are no beds.....there may be a bed tomorrow, but there may not. Who knows how long it will take until there is a bed? How long do we wait?
Are we safe to wait? I will make us safe....I will call for help. I will set up playdates for the younger boys. I will schedule breaks and we will do our best. But, if you needed any other kind of medical help, you would go to the ER and there would be help. There is no ER to go to. There is no help. Our system is broken, when a little 11 year old boy is in need of help and there is simply no help for him!
I am sharing our story because we have to have a change. Mental health needs have got to become a priority for our country. My son did nothing wrong to deserve his struggles, and on the right meds he may be healthier. If any of you, know anyone, or know someone who knows someone, please speak up. We have to make caring for those with mental health needs a focus so more parents can hit bottom, and make that call to the psyciatric hospital and get their child help, rather than coming home and worrying how many days, weeks, or months it will be before a bed is available.
Thursday, December 27, 2012
Brag on Jacob
Jacob is growing up before my eyes! I will always believe that Jacob is an old soul in a youthful body. He can break dance and jive like no other, but his knowledge and understanding of people is deeper than his 6 years.
Over the past few days of vacation there have been numerous times where Jacob has shown his understanding and love for his brothers. I knew over a year ago, when Jacob asked his speech therapist why David didn't talk much, that Jacob was beginning to understand that there was something different about his brothers. What I didnt expect was that he would embrace their differences and so effortlessly account for them in his day to day life.
Just a few of the recent times where Jacob has been so much wiser than his 6 years:
1. Tonight we were writing thank you notes and the boys were drawing pictures on the front of the notes. David started immediately "scribbling" and seemed frustrated. Jacob quickly asked David what he wanted to draw and with each question David would shake his head. He didn't want to draw a dog, or a car, or a house. Finally, Jacob said, I'll dot you a rainbow and then you can trace it.
Without me telling him or David saying anything, Jacob realized that David was not able to "draw" like he was and while most of the time it would not bother David, today it was upsetting him. By Jacob outlining a rainbow for David, David could trace it and feel success and the love of his brother.
As he was tracing the rainbow, David said he needed red. Jacob scurried off to find a red and asked if David wanted a red crayon or a red marker. David asked for a marker but when Jacob couldn't find one he brought up a red crayon. Jacob told David to promise not to break the crayon, and handed it to David. David promptly took the crayon and broke off the tip. Jacob looked at David's face, and rather than being angry he just said, " well I guess I have 2 pieces now"
He would have been within his rights to be angry, it would have been understandable, but Jacob understands David gets frustrated, he accepts David for who he is and to him it seemed to be more important that we were coloring as a family.
2. Matthew is up and down like a yo yo right now. His mood is changing very quickly. Jacob, like all little brothers, loves his big brother with all of his heart, but in an instant he can become overwhelmed by Matthew. He seems to be able to read when matthew is calm, and Jacob takes those moments to play with Matthew, to rough house and to giggle and laugh. They are building an important bond. Whenever Matthew is able, Jacob is the first one in the house to get together with him and goof around, and when Matthew is not able to play, Jacob is ok waiting. He accepts his big brother for exactly who he is, and appreciates and giggles and laughs when they are playing together.
3. For Hanukah I gave each of the boys a certificate for a night out with me. I had a babysitter the other day and an hour before my friends were ready to go out so I explained to Jacob and David that I could take both of them out or I could take one of them now and one of them later. Jacob quickly said, "let's go together" while David said, " I want to go alone". As I explained to them that both would get a turn, Jacob quickly suggested that I should go out and that David and he would go out another night.
It was obvious that Jacob was ok staying home with David and the babysitter, and that he was ok not going on a date that night, but that he was not ok staying home without David, so he quickly reminded David that the babysitter had great movies and they dashed off together to pick a movie! This meant I got an hour to myself, to bask in the love that my 6 year old shows to all of us.
Some may say that Jacob is burdened with eventually caring for his two older siblings on some level. I choose to say that Jacob is going to become an amazing person as he continues to grow up in our house. He has learned compassion, understanding and patience at a very young age because he has had to. He has seen his brother struggle with mental health issues and loves him no matter what- this is more than can be said for many in our society.
He is a 6 year old, but so often he thinks about things in a way that is more generous than many much older. I am so proud to be his mommy and to see him growing into such an amazing boy!
Over the past few days of vacation there have been numerous times where Jacob has shown his understanding and love for his brothers. I knew over a year ago, when Jacob asked his speech therapist why David didn't talk much, that Jacob was beginning to understand that there was something different about his brothers. What I didnt expect was that he would embrace their differences and so effortlessly account for them in his day to day life.
Just a few of the recent times where Jacob has been so much wiser than his 6 years:
1. Tonight we were writing thank you notes and the boys were drawing pictures on the front of the notes. David started immediately "scribbling" and seemed frustrated. Jacob quickly asked David what he wanted to draw and with each question David would shake his head. He didn't want to draw a dog, or a car, or a house. Finally, Jacob said, I'll dot you a rainbow and then you can trace it.
Without me telling him or David saying anything, Jacob realized that David was not able to "draw" like he was and while most of the time it would not bother David, today it was upsetting him. By Jacob outlining a rainbow for David, David could trace it and feel success and the love of his brother.
As he was tracing the rainbow, David said he needed red. Jacob scurried off to find a red and asked if David wanted a red crayon or a red marker. David asked for a marker but when Jacob couldn't find one he brought up a red crayon. Jacob told David to promise not to break the crayon, and handed it to David. David promptly took the crayon and broke off the tip. Jacob looked at David's face, and rather than being angry he just said, " well I guess I have 2 pieces now"
He would have been within his rights to be angry, it would have been understandable, but Jacob understands David gets frustrated, he accepts David for who he is and to him it seemed to be more important that we were coloring as a family.
2. Matthew is up and down like a yo yo right now. His mood is changing very quickly. Jacob, like all little brothers, loves his big brother with all of his heart, but in an instant he can become overwhelmed by Matthew. He seems to be able to read when matthew is calm, and Jacob takes those moments to play with Matthew, to rough house and to giggle and laugh. They are building an important bond. Whenever Matthew is able, Jacob is the first one in the house to get together with him and goof around, and when Matthew is not able to play, Jacob is ok waiting. He accepts his big brother for exactly who he is, and appreciates and giggles and laughs when they are playing together.
3. For Hanukah I gave each of the boys a certificate for a night out with me. I had a babysitter the other day and an hour before my friends were ready to go out so I explained to Jacob and David that I could take both of them out or I could take one of them now and one of them later. Jacob quickly said, "let's go together" while David said, " I want to go alone". As I explained to them that both would get a turn, Jacob quickly suggested that I should go out and that David and he would go out another night.
It was obvious that Jacob was ok staying home with David and the babysitter, and that he was ok not going on a date that night, but that he was not ok staying home without David, so he quickly reminded David that the babysitter had great movies and they dashed off together to pick a movie! This meant I got an hour to myself, to bask in the love that my 6 year old shows to all of us.
Some may say that Jacob is burdened with eventually caring for his two older siblings on some level. I choose to say that Jacob is going to become an amazing person as he continues to grow up in our house. He has learned compassion, understanding and patience at a very young age because he has had to. He has seen his brother struggle with mental health issues and loves him no matter what- this is more than can be said for many in our society.
He is a 6 year old, but so often he thinks about things in a way that is more generous than many much older. I am so proud to be his mommy and to see him growing into such an amazing boy!
Sunday, December 16, 2012
I have to write tonight to hopefully find calmness
As I write my blog, I try to remember that things on the internet are visible to everyone, everywhere. Since I want to be careful and make sure things are read with the correct intent, I don't like to share challenges with my boys schools until there is a resolution.
This year has been ripe with frustrations since October with Matthew's new school program. It just isn't a match. I could list all of the reasons why it just isn't working, but truly it all comes down to a few main items:
1. I don't believe he is being educated at a level that makes sense for him. I think this causes him unnecessary stress, as a lot of the work is at a level that is beyond his reach.
2. The communication with his team does not work- we don't speak the same language and are not on the same page. I don't know how to fix this, and at this point I am too tired to continue to try.
On Friday, the day of the shootings in Newton, CT, I was in a meeting with the head of special education discussing what we were going to do for matthew. I want him moved to another placement, and sadly there is no other placement for him. That leaves us in quite a quandry, as my only option is to leave him where he is.
I offered that I would leave him where he is, and continue to work towards a peaceful resolution with his current team if we could do the following:
1. Ensure that no words of violence are used as vocabulary words.
2. lower his level of work to the level his previous teachers felt was appropriate and see if that decreases his anxiety
3. Continue to work towards finding a new placement.
My biggest fear in life is that Matthew will one day hurt someone. I fear this more than anything else because if Matthew hurts someone else, it will be the biggest tragedy of his life in addition to the life of others. Matthew is not a violent person at all. I will say that again, Matthew does not have a violent bone in his body. However, when Matthew is enraged, he is very aggressive. Unfortunately, one never knows when he is going to explode and what sets him off one day would not upset him at all the next.
I have begged, asked and pleaded that words of violence and aggression not be used as vocabulary words for Matthew:
Rifle, huntsmen and prison are a few of the recent vocabulary words that he has been "studying" even after my repeated requests.
Why he needs to know what any of these words mean I don't understand. I need to limit his exposure to violence because he already has a tendency towards aggression. I don't need him reading passages about killing animals. I don't need him reading passages about hunting with rifles. I need him to read about peaceful topics. Or even to read about situations of conflict and resolution so he has a chance to learn how to problem solve.
To be at a meeting to determine what can be done for my son educationally and to learn that nothing can be done was heart wrenching. To leave that meeting and find out that a young man had shot 26 people truly hurt me to the core. I feel like I have one chance in the world to make Matthew a productive member of society.
He came to me with a huge stack of things working against him- his IQ is very low, he had been exposed to alcohol prenatally, and the social history of his birth father is questionable. Given all that is working against him, I have worked diligently to create success for Matthew.
There have been many incidents that have taken place inside the walls of my house that no one will ever know about. You likely would find them hard to believe if you only know Matthew on the surface. David and Jacob both know where to go when Matthew is angry and how to stay calm. Jacob especially is a genius at helping deescalate the situation when Matthew is angry. Until you have lived with a child with mental illness you will never, ever know what that is like.
Each and every time I have gotten to the point that i have decided Matthew needed help, I have called the local pychiatric hospital and been told there were no beds. When I found an emergency respite program and have called them, I have been told there is no bed. We have waited a month for both of these programs to have beds open up. A month in and out of crisis. A month doing the best we can. A month, 30 days, 30 nights, while he cycles! And many of the times we have gotten to the point where a bed has become available and we have come through the crisis and are no longer in need of the bed. I am exhausted, I need a break, but I will not use a crisis respite bed or a psychiatric hospital bed for me to rejuvenate. That is not the purpose of those beds. Additionally, Matthew needs to know that he belongs in our house. He is a member of our family, and the only time he cannot be at home is when he is unsafe, so I will not take advantage of a bed that becomes available after 30 days if we are no longer in crisis.
Think of this in terms of any other illness or problem-
your heater breaks and no one can fix it for 30 days, it is mid winter.....do you wait and freeze?
your appendix is bursting- no surgeon can fix it for 30 days.....do you wait?
you are being assaulted by a stranger, the police can't come for 30 days....do you wait?
Of course you don't wait, you would be ridiculous for waiting! You would never even consider waiting. But when my child is an emotional wreck. When we can't get in to see his psychiatrist, and my other boys are feeling unsafe, we wait. And we wait. And we wait. And I do my best, and I lean on my community. And I take full advantage of the 3 hours of respite I get each week and hold David and Jacob a little closer and have some extra fun and rebuild our relationship for those 3 hours.
Tonight at the grocery store Mathew exploded. The explosion was about food, of course, and the details are unimportant. He laid on the floor of the grocery store kicking and screaming. He begged another woman to take him home. He laid back down and kicked and threatened to knock items off of the shelf. I tried talking calmly. I tried talking firmly. I tried getting him to leave, I tried getting him engaged in shopping. He laid on the ground screaming.
I finally walked with David and Jacob and assumed Matthew would follow. He followed at a distance and I assumed he would settle down. He for some reason got upset again and stopped at the deli counter. This is where I was stopped by 3 staff members of the store to see if everything was ok. They were wonderful for asking. But there was no calming Matthew down. He took off again and I said I was grabbing one more item and then leaving. I knew that leaving in that moment wouldn't have worked, he wouldn't have left with me. I hoped that just getting the last item, and giving him a few minutes would allow Matthew the chance to settle. A staff member did a wonderful job talking to matthew and trying to calm him down. Misty, at Hannaford, I owe you one!
After I paid Matthew got in the car and I was seeing stars. His entire behavior had embarrassed me. There was no real reason for it. We had been having a good day. I don't know what switched for him. I told him when we got home he would go to his room and think and that was again the beginning of the end. He went to his room calmly for a while, and then erupted. He giggled the giggle of someone in a manic phase, he cried, he screamed and he giggled the giggle again.
I went up to his room to talk to him and that is when I found the remains of another bag of chocolate and millions of gold coin wrappers. The chocolate is for presents that I am giving to the boys teachers, no matter where I hide it he finds it. It is more important to him than breathing. The gold coin wrappers I am assuming he has been taking from Sunday school throughout the celebration of Chanukah. These are gelt wrappers. This is the 4th time we have cleaned up his room from wrappers and wrappers and wrappers. Each time I get sick. How can I not protect him from himself? How can he be so desperate for candy that he will risk so much? He has vomited twice from eating so much candy, and yet he keeps eating it. I don't understand, I can't understand.
When you are unable to make good decisions because your IQ is low and you do not see the world through the same lense as the average person, you make bad choices. Matthew's life is full of bad choices. The problem is that to teach him good choices requires him to have a person to act as a brain that walks around outside his body. This is a full time job. I already have a full time job!
I feel the need to speak loudly on behalf of those with mental illness. I feel the need to beg the district one more time to understand that when we teach Matthew violent words for vocabulary words we are putting future contacts of his at risk.
There are so many opinions being thrown around on facebook these days about what happened to those poor, innocent children in Newton. Of course none of them deserved to die. None of the children of Sandy Hook Elementary deserved to see the ugly reality that they were face to face with on Friday morning. However, there are other people who need to be remembered. Adam Lanza had a mother, a father and a brother. Only they know what life was like with Adam as a child. Only they will know the private torture of knowing that their brother and son created this tragedy.
The autism community is speaking out with a vengeance that it is unfair to say that Adam had an autism spectrum disorder because this speaks poorly about all of those with autism. I find that horrendous. No one should ever be in such a horrible place that they feel the only way out is to kill children. Whether Adam had autism or not does not give us the reason as to why he did what he did. If Adam did have autism, that is just a piece of who he was. Additionally, if he had a mental illness, that is just a piece of who he was.
Matthew is not defined by his mental illness. Matthew is a loving, funny, larger than life boy who loves simple things and cheers for everything in life! He is passionate and funny. However, he is tortured by mental illness, sometimes more tortured than others. If our education system does not take this into consideration, we are doing Matthew a disservice. If our political system does not find some way to manage the guns available to those who may use them unsafely, we are all at risk.
First and foremost though we need to stop spewing hatred and remember that every person has a mother, a father, a sibling and someone that cares about them. Even Adam Lanza was someone's grandson, nephew, and friend.
Mental health is as important if not more important that physical health. We have got to provide support that is immediately available so that I can be sure that Matthew grows up safe so that everyone around him is also guaranteed their safety.
This year has been ripe with frustrations since October with Matthew's new school program. It just isn't a match. I could list all of the reasons why it just isn't working, but truly it all comes down to a few main items:
1. I don't believe he is being educated at a level that makes sense for him. I think this causes him unnecessary stress, as a lot of the work is at a level that is beyond his reach.
2. The communication with his team does not work- we don't speak the same language and are not on the same page. I don't know how to fix this, and at this point I am too tired to continue to try.
On Friday, the day of the shootings in Newton, CT, I was in a meeting with the head of special education discussing what we were going to do for matthew. I want him moved to another placement, and sadly there is no other placement for him. That leaves us in quite a quandry, as my only option is to leave him where he is.
I offered that I would leave him where he is, and continue to work towards a peaceful resolution with his current team if we could do the following:
1. Ensure that no words of violence are used as vocabulary words.
2. lower his level of work to the level his previous teachers felt was appropriate and see if that decreases his anxiety
3. Continue to work towards finding a new placement.
My biggest fear in life is that Matthew will one day hurt someone. I fear this more than anything else because if Matthew hurts someone else, it will be the biggest tragedy of his life in addition to the life of others. Matthew is not a violent person at all. I will say that again, Matthew does not have a violent bone in his body. However, when Matthew is enraged, he is very aggressive. Unfortunately, one never knows when he is going to explode and what sets him off one day would not upset him at all the next.
I have begged, asked and pleaded that words of violence and aggression not be used as vocabulary words for Matthew:
Rifle, huntsmen and prison are a few of the recent vocabulary words that he has been "studying" even after my repeated requests.
Why he needs to know what any of these words mean I don't understand. I need to limit his exposure to violence because he already has a tendency towards aggression. I don't need him reading passages about killing animals. I don't need him reading passages about hunting with rifles. I need him to read about peaceful topics. Or even to read about situations of conflict and resolution so he has a chance to learn how to problem solve.
To be at a meeting to determine what can be done for my son educationally and to learn that nothing can be done was heart wrenching. To leave that meeting and find out that a young man had shot 26 people truly hurt me to the core. I feel like I have one chance in the world to make Matthew a productive member of society.
He came to me with a huge stack of things working against him- his IQ is very low, he had been exposed to alcohol prenatally, and the social history of his birth father is questionable. Given all that is working against him, I have worked diligently to create success for Matthew.
There have been many incidents that have taken place inside the walls of my house that no one will ever know about. You likely would find them hard to believe if you only know Matthew on the surface. David and Jacob both know where to go when Matthew is angry and how to stay calm. Jacob especially is a genius at helping deescalate the situation when Matthew is angry. Until you have lived with a child with mental illness you will never, ever know what that is like.
Each and every time I have gotten to the point that i have decided Matthew needed help, I have called the local pychiatric hospital and been told there were no beds. When I found an emergency respite program and have called them, I have been told there is no bed. We have waited a month for both of these programs to have beds open up. A month in and out of crisis. A month doing the best we can. A month, 30 days, 30 nights, while he cycles! And many of the times we have gotten to the point where a bed has become available and we have come through the crisis and are no longer in need of the bed. I am exhausted, I need a break, but I will not use a crisis respite bed or a psychiatric hospital bed for me to rejuvenate. That is not the purpose of those beds. Additionally, Matthew needs to know that he belongs in our house. He is a member of our family, and the only time he cannot be at home is when he is unsafe, so I will not take advantage of a bed that becomes available after 30 days if we are no longer in crisis.
Think of this in terms of any other illness or problem-
your heater breaks and no one can fix it for 30 days, it is mid winter.....do you wait and freeze?
your appendix is bursting- no surgeon can fix it for 30 days.....do you wait?
you are being assaulted by a stranger, the police can't come for 30 days....do you wait?
Of course you don't wait, you would be ridiculous for waiting! You would never even consider waiting. But when my child is an emotional wreck. When we can't get in to see his psychiatrist, and my other boys are feeling unsafe, we wait. And we wait. And we wait. And I do my best, and I lean on my community. And I take full advantage of the 3 hours of respite I get each week and hold David and Jacob a little closer and have some extra fun and rebuild our relationship for those 3 hours.
Tonight at the grocery store Mathew exploded. The explosion was about food, of course, and the details are unimportant. He laid on the floor of the grocery store kicking and screaming. He begged another woman to take him home. He laid back down and kicked and threatened to knock items off of the shelf. I tried talking calmly. I tried talking firmly. I tried getting him to leave, I tried getting him engaged in shopping. He laid on the ground screaming.
I finally walked with David and Jacob and assumed Matthew would follow. He followed at a distance and I assumed he would settle down. He for some reason got upset again and stopped at the deli counter. This is where I was stopped by 3 staff members of the store to see if everything was ok. They were wonderful for asking. But there was no calming Matthew down. He took off again and I said I was grabbing one more item and then leaving. I knew that leaving in that moment wouldn't have worked, he wouldn't have left with me. I hoped that just getting the last item, and giving him a few minutes would allow Matthew the chance to settle. A staff member did a wonderful job talking to matthew and trying to calm him down. Misty, at Hannaford, I owe you one!
After I paid Matthew got in the car and I was seeing stars. His entire behavior had embarrassed me. There was no real reason for it. We had been having a good day. I don't know what switched for him. I told him when we got home he would go to his room and think and that was again the beginning of the end. He went to his room calmly for a while, and then erupted. He giggled the giggle of someone in a manic phase, he cried, he screamed and he giggled the giggle again.
I went up to his room to talk to him and that is when I found the remains of another bag of chocolate and millions of gold coin wrappers. The chocolate is for presents that I am giving to the boys teachers, no matter where I hide it he finds it. It is more important to him than breathing. The gold coin wrappers I am assuming he has been taking from Sunday school throughout the celebration of Chanukah. These are gelt wrappers. This is the 4th time we have cleaned up his room from wrappers and wrappers and wrappers. Each time I get sick. How can I not protect him from himself? How can he be so desperate for candy that he will risk so much? He has vomited twice from eating so much candy, and yet he keeps eating it. I don't understand, I can't understand.
When you are unable to make good decisions because your IQ is low and you do not see the world through the same lense as the average person, you make bad choices. Matthew's life is full of bad choices. The problem is that to teach him good choices requires him to have a person to act as a brain that walks around outside his body. This is a full time job. I already have a full time job!
I feel the need to speak loudly on behalf of those with mental illness. I feel the need to beg the district one more time to understand that when we teach Matthew violent words for vocabulary words we are putting future contacts of his at risk.
There are so many opinions being thrown around on facebook these days about what happened to those poor, innocent children in Newton. Of course none of them deserved to die. None of the children of Sandy Hook Elementary deserved to see the ugly reality that they were face to face with on Friday morning. However, there are other people who need to be remembered. Adam Lanza had a mother, a father and a brother. Only they know what life was like with Adam as a child. Only they will know the private torture of knowing that their brother and son created this tragedy.
The autism community is speaking out with a vengeance that it is unfair to say that Adam had an autism spectrum disorder because this speaks poorly about all of those with autism. I find that horrendous. No one should ever be in such a horrible place that they feel the only way out is to kill children. Whether Adam had autism or not does not give us the reason as to why he did what he did. If Adam did have autism, that is just a piece of who he was. Additionally, if he had a mental illness, that is just a piece of who he was.
Matthew is not defined by his mental illness. Matthew is a loving, funny, larger than life boy who loves simple things and cheers for everything in life! He is passionate and funny. However, he is tortured by mental illness, sometimes more tortured than others. If our education system does not take this into consideration, we are doing Matthew a disservice. If our political system does not find some way to manage the guns available to those who may use them unsafely, we are all at risk.
First and foremost though we need to stop spewing hatred and remember that every person has a mother, a father, a sibling and someone that cares about them. Even Adam Lanza was someone's grandson, nephew, and friend.
Mental health is as important if not more important that physical health. We have got to provide support that is immediately available so that I can be sure that Matthew grows up safe so that everyone around him is also guaranteed their safety.
Monday, November 19, 2012
The candy store
I consistently think about my parenting and how it will affect Matthew. I know that many think I am pretty hard on him. That maybe I don't allow him enough freedom, that maybe I take things with Matthew too seriously. I am a strong believer that a parent has to parent each child as an individual. In my house, this means each child is parented fairly, but also very differently.
A lot of this stems from how I think the boys are perceived by the world at large. Matthew comes across as much more capable than he actually his. His IQ puts him at a level of mild mental retardation. This is a very accurate description of his ability to cope with life, to problem solve and to participate in self care activities. However, it is not at all how most would describe Matthew. He is very charismatic, and can carry on conversations, and unless you have a lot of conversations with Matthew, he has enough scripts that it takes a little while for someone to learn that he cycles though a variety of scripts with each person.
This weekend Matthew and his respite worker were faced with a reality that reminded me that it is important to be firm and to continue parenting Matthew with little wiggle room. Matthew, as we all know, has a food obsession. He thinks about it, talks about it, lives for food!
This weekend Matthew and his respite worker were walking through the mall and they went to check out the candy store. While they were in the store Matthew became very focused on the skittles container. This is one of those candy stores where all of the candy is in a large bin and you use a spoon to scoop out the amount of candy you want and put it into a bag.
Matthew's respite worker was looking around the store while Matthew looked around and Matthew gave the counter man an odd look and a quirky smile and apparently made the man nervous. Matthew's hands were on the spoon and it appeared that Matthew was putting candy into the spoon and was trying to steal candy. The shop owner came over to Matthew and the respite worker and told Matthew that he needed to wait in the store, the owner then went to the back, looked at the video and saw that Matthew had not stolen anything and he came back out front and told them they were free to leave the store.
When Matthew and his respite worker came home, Matthew quickly told her to tell me what had happened, which is wonderful. However, as she told me what had happened, it became very apparent that Matthew was not understanding the gravity of this situation. He was focused on the fact that I might not make him dinner because we were talking about what had happened. He was focused on the fact that I might not make him what he wanted for dinner. No matter how much I tried to refocus him and get him to understand that dinner is not a part of this equation, he could not grasp the gravity of what had happened.
Even as he sat eating the quesidilla he wanted for dinner and I tried to again talk to him about what had happened that the man thought he had stolen candy, I could not get Matthew to understand that stealing is a big deal. That even if it is just a skittle, it is a really big deal.
Unfortunately for Matthew he has a few things that will always work against him in life:
1. He is large for his age- while he is only 11, he looks more like 13 or 14, so people relate to him as if he is older and expect more from him.
2. He is african american, and sadly, in the US, this is still often a reason for people to respond differently.
3. He communicates well above his level of understanding. He can look you in the face and talk and talk and you think he is understanding and he truly is just repeating what you have said without internalizing the information or understanding it for himself.
My first thought was why would the respite worker bring Matthew to a candy store. She knows of his food obsession, it seems like a silly place to bring him.
My second thought was what happens if an 11 year old is accused of stealing? What is the next step? How do you convince people that he is unaware of what he is doing, while teaching him how serious this is?
Thankfully, I also had another thought. If I don't teach him the risks of this behavior, he will never learn. Of course he has to go in and out of candy stores. He has to do this as a young adult so that when he has the freedom as an adult, I have impressed upon him that he cannot steal. That taking even one piece of candy is stealing. That touching the candy is wrong. That looking at the candy too long makes shop owners nervous.
As you are with us and you wonder why in the world I am so strict with Matthew, please realize that I am parenting Matthew so that he is ready to be an adult, to be able to be in the world and not eat himself to death. So that he doesn't go table to table in a restaurant inappropriately interacting. So that he understands how you relate with others at a dinner party, at a buffet, at a restaurant etc...... I am parenting the adult that Matthew will become so that he is ready for life in the real world. I believe he will always need help, but I also believe he will not live with a caretaker with him 24/7, for this reason, he has to know how to live in the world, and I was given 18 years to teach him the skills he will need to do this. I have 7 short years left, and given that times is short, I ask for your help in teaching him the rules of society so that Matthew is ready to take on the world!
A lot of this stems from how I think the boys are perceived by the world at large. Matthew comes across as much more capable than he actually his. His IQ puts him at a level of mild mental retardation. This is a very accurate description of his ability to cope with life, to problem solve and to participate in self care activities. However, it is not at all how most would describe Matthew. He is very charismatic, and can carry on conversations, and unless you have a lot of conversations with Matthew, he has enough scripts that it takes a little while for someone to learn that he cycles though a variety of scripts with each person.
This weekend Matthew and his respite worker were faced with a reality that reminded me that it is important to be firm and to continue parenting Matthew with little wiggle room. Matthew, as we all know, has a food obsession. He thinks about it, talks about it, lives for food!
This weekend Matthew and his respite worker were walking through the mall and they went to check out the candy store. While they were in the store Matthew became very focused on the skittles container. This is one of those candy stores where all of the candy is in a large bin and you use a spoon to scoop out the amount of candy you want and put it into a bag.
Matthew's respite worker was looking around the store while Matthew looked around and Matthew gave the counter man an odd look and a quirky smile and apparently made the man nervous. Matthew's hands were on the spoon and it appeared that Matthew was putting candy into the spoon and was trying to steal candy. The shop owner came over to Matthew and the respite worker and told Matthew that he needed to wait in the store, the owner then went to the back, looked at the video and saw that Matthew had not stolen anything and he came back out front and told them they were free to leave the store.
When Matthew and his respite worker came home, Matthew quickly told her to tell me what had happened, which is wonderful. However, as she told me what had happened, it became very apparent that Matthew was not understanding the gravity of this situation. He was focused on the fact that I might not make him dinner because we were talking about what had happened. He was focused on the fact that I might not make him what he wanted for dinner. No matter how much I tried to refocus him and get him to understand that dinner is not a part of this equation, he could not grasp the gravity of what had happened.
Even as he sat eating the quesidilla he wanted for dinner and I tried to again talk to him about what had happened that the man thought he had stolen candy, I could not get Matthew to understand that stealing is a big deal. That even if it is just a skittle, it is a really big deal.
Unfortunately for Matthew he has a few things that will always work against him in life:
1. He is large for his age- while he is only 11, he looks more like 13 or 14, so people relate to him as if he is older and expect more from him.
2. He is african american, and sadly, in the US, this is still often a reason for people to respond differently.
3. He communicates well above his level of understanding. He can look you in the face and talk and talk and you think he is understanding and he truly is just repeating what you have said without internalizing the information or understanding it for himself.
My first thought was why would the respite worker bring Matthew to a candy store. She knows of his food obsession, it seems like a silly place to bring him.
My second thought was what happens if an 11 year old is accused of stealing? What is the next step? How do you convince people that he is unaware of what he is doing, while teaching him how serious this is?
Thankfully, I also had another thought. If I don't teach him the risks of this behavior, he will never learn. Of course he has to go in and out of candy stores. He has to do this as a young adult so that when he has the freedom as an adult, I have impressed upon him that he cannot steal. That taking even one piece of candy is stealing. That touching the candy is wrong. That looking at the candy too long makes shop owners nervous.
As you are with us and you wonder why in the world I am so strict with Matthew, please realize that I am parenting Matthew so that he is ready to be an adult, to be able to be in the world and not eat himself to death. So that he doesn't go table to table in a restaurant inappropriately interacting. So that he understands how you relate with others at a dinner party, at a buffet, at a restaurant etc...... I am parenting the adult that Matthew will become so that he is ready for life in the real world. I believe he will always need help, but I also believe he will not live with a caretaker with him 24/7, for this reason, he has to know how to live in the world, and I was given 18 years to teach him the skills he will need to do this. I have 7 short years left, and given that times is short, I ask for your help in teaching him the rules of society so that Matthew is ready to take on the world!
Tuesday, November 13, 2012
update writing what I cannot speak
I am not writing this because I want your sympathy or because I need you to worry about us, but rather I am writing it because I simply can't talk about it all right now. When I can't talk, I can write, and when I can write I can share what is going on inside my family without feeling judged as much as when I have to explain it to you to get you to understand.
It has been over a year since Matthew has been in a hospital and it is my hope right now that we can keep moving forward. It has been just under a year since Matthew was in Healy house, a place that allows all of us a 3 week respite, and today I made the call to get him on the waiting list to go back. Tonight however I realized that my son is struggling more than I had thought. Tonight I realized that like everything in life there is a cycle to Matthew's ups and downs and we are heading down rather quickly.
It started a few weeks ago, he would get more upset than usual about little things. He was food hording and obsessing and I thought it was just a phase. I assumed it would pass. Then he and I started arguing more....I would say black and he would say white. I would say up and he would say down. Then on Thursday he got angry and got a little bit physical with me. Nothing major, he just threw a toy. Then we had a fabulous weekend. I thought for sure things were looking up. We had a wonderful time with my extended family and I thought the cycle had ended.
On Monday we were home for Veteran's day and things were going so well that I kept Matthew home for the day rather than sending him to the YMCA for a child care program. Then at around 1:30 things started to plummet. I went to the car to tke the boys on a playdate and I told him it was time to come. He was in the house for a few more minutes and said he was looking for his Ipod. Turned out he came out to the car with his pockets full of food. I hadn't locked the lock box because we were leaving.
I told him that he had made a bad choice and he started to kick and hit. I told him he would sit at the playground and he screamed. He got out of the car at the playground but then when I was firm and told him to go back, he went back. I still thought maybe we would be ok. After the playdate where things went pretty well, we went to the grocery store. Jacob and David wanted a cookie at the grocery store. I had the internal mom fight- it wasn't fair that they couldnt have a cookie, but Matthew had been told he couldnt have one as part of the consequence of putting all of the junk food in his pockets. I knew giving them a cookie would cause a tantrum, but was it fair to deny the other 2 a cookie? It was the grocery store routine. I got them both a cookie and Matthew said he understood, and then out of nowhere his anger took over and he kicked and screamed. The panic that takes over the other 2 in these moments is so intense. It is not normal to block your child with a grocery cart so he doesn't hurt your other children. But for a child with FAS, anger is anger and when he is angry Matthew sees no consequences to his actions. As quickly as the anger came on, the anger subsided and matthew cried and apologized and it was over.
Today things had gone well in the morning. I thought we were doing well. I went to pick up Matthew and Jacob from the YMCA after school and there had been an announcement that there was to be a pizza party on Wednesday at the Y. Matthew doesn't go to the YMCA on Wednesday, Matthew goes to Hebrew school. As soon as I walked in, I could see he was stewing. I knew he was upset, and it only took a moment to find out why. He wanted pizza on Wednesday, he didnt care about hebrew school. He didnt care about anything. He wanted pizza and that was all he could see.
I was firm, I was calm, I was patient. He had hebrew school, he would have pizza another time. No, I would not change my mind. No, he could not stay home from hebrew school for pizza. We walked to the car and he hit me. We walked to the car and he kicked my leg and screamed curse words that you would usually hear from a sailor. We walked to the car and I held Jacob's hand and reassured him.
Finally, after what seemed like forever he got in the car, and after a few moments he cried and cried. The tears of a person with a mental illness. The tears of a person who cannot control themselves. The tears that break a moms heart. The tears that tell me he needs help. The psychiatrist is away until Monday. We have an appointment on Wednesday, but will it be soon enough? Will the darkness go away as fast as it has come? He missed last Thanksgiving with us. Will he be safe enough to be with us this year? Where is there help? I hate to go down this dark road again. I hate to see him struggle with is demons.
We will be ok, I know that. I know that mental illness is like any other disease and I will get Matthew the help he needs. I will keep life consistent for David and Jacob and myself because we deserve that. I will get Matthew help and stay calm and be patient because that will help him. I am hoping that we can make it to the appointment with the psychiatrist on Wednesday, that she will make a medication change and he will feel better. I hate to see him shake with tears, and to know that he hates exploding with rage but at the same time he cannot seem to stop himself.
It has been over a year since Matthew has been in a hospital and it is my hope right now that we can keep moving forward. It has been just under a year since Matthew was in Healy house, a place that allows all of us a 3 week respite, and today I made the call to get him on the waiting list to go back. Tonight however I realized that my son is struggling more than I had thought. Tonight I realized that like everything in life there is a cycle to Matthew's ups and downs and we are heading down rather quickly.
It started a few weeks ago, he would get more upset than usual about little things. He was food hording and obsessing and I thought it was just a phase. I assumed it would pass. Then he and I started arguing more....I would say black and he would say white. I would say up and he would say down. Then on Thursday he got angry and got a little bit physical with me. Nothing major, he just threw a toy. Then we had a fabulous weekend. I thought for sure things were looking up. We had a wonderful time with my extended family and I thought the cycle had ended.
On Monday we were home for Veteran's day and things were going so well that I kept Matthew home for the day rather than sending him to the YMCA for a child care program. Then at around 1:30 things started to plummet. I went to the car to tke the boys on a playdate and I told him it was time to come. He was in the house for a few more minutes and said he was looking for his Ipod. Turned out he came out to the car with his pockets full of food. I hadn't locked the lock box because we were leaving.
I told him that he had made a bad choice and he started to kick and hit. I told him he would sit at the playground and he screamed. He got out of the car at the playground but then when I was firm and told him to go back, he went back. I still thought maybe we would be ok. After the playdate where things went pretty well, we went to the grocery store. Jacob and David wanted a cookie at the grocery store. I had the internal mom fight- it wasn't fair that they couldnt have a cookie, but Matthew had been told he couldnt have one as part of the consequence of putting all of the junk food in his pockets. I knew giving them a cookie would cause a tantrum, but was it fair to deny the other 2 a cookie? It was the grocery store routine. I got them both a cookie and Matthew said he understood, and then out of nowhere his anger took over and he kicked and screamed. The panic that takes over the other 2 in these moments is so intense. It is not normal to block your child with a grocery cart so he doesn't hurt your other children. But for a child with FAS, anger is anger and when he is angry Matthew sees no consequences to his actions. As quickly as the anger came on, the anger subsided and matthew cried and apologized and it was over.
Today things had gone well in the morning. I thought we were doing well. I went to pick up Matthew and Jacob from the YMCA after school and there had been an announcement that there was to be a pizza party on Wednesday at the Y. Matthew doesn't go to the YMCA on Wednesday, Matthew goes to Hebrew school. As soon as I walked in, I could see he was stewing. I knew he was upset, and it only took a moment to find out why. He wanted pizza on Wednesday, he didnt care about hebrew school. He didnt care about anything. He wanted pizza and that was all he could see.
I was firm, I was calm, I was patient. He had hebrew school, he would have pizza another time. No, I would not change my mind. No, he could not stay home from hebrew school for pizza. We walked to the car and he hit me. We walked to the car and he kicked my leg and screamed curse words that you would usually hear from a sailor. We walked to the car and I held Jacob's hand and reassured him.
Finally, after what seemed like forever he got in the car, and after a few moments he cried and cried. The tears of a person with a mental illness. The tears of a person who cannot control themselves. The tears that break a moms heart. The tears that tell me he needs help. The psychiatrist is away until Monday. We have an appointment on Wednesday, but will it be soon enough? Will the darkness go away as fast as it has come? He missed last Thanksgiving with us. Will he be safe enough to be with us this year? Where is there help? I hate to go down this dark road again. I hate to see him struggle with is demons.
We will be ok, I know that. I know that mental illness is like any other disease and I will get Matthew the help he needs. I will keep life consistent for David and Jacob and myself because we deserve that. I will get Matthew help and stay calm and be patient because that will help him. I am hoping that we can make it to the appointment with the psychiatrist on Wednesday, that she will make a medication change and he will feel better. I hate to see him shake with tears, and to know that he hates exploding with rage but at the same time he cannot seem to stop himself.
Sunday, November 4, 2012
The roller coaster of our life
We have had a pretty smooth start to the school year. All of the boys are doing relatively well. Matthew started in a new school and Jacob has started Kindergarten, so given the major life changes going on, I am happy to say that the past few months have been relatively calm.
Unfortunately, when life is calm I forget all that can go into running our lives when the roller coaster of our lives gathers steam. I don't know exactly what is going on with Matthew but the last 3 days have been intense. He is so hyper focused on food right now, it is all he is thinking about, it is keeping him up at night, and overtaking his entire days. His obsession over food will always be more powerful than my ability to think one step ahead of him and prevent him from wreaking havoc in the house.
As he is getting older he is getting just that much more clever. He knows the complete and total inventory of every food item in our house and it seems like he waits with baited breath for me to walk away or leave something out or open. Twice this weekend he has asked for a drink which I have of course allowed, only to find him elbow deep in a container of chocolate or shoving candy in his mouth that I had mistakenly left out.
We made pumpkin bread and he told me that he was going to leave it alone. He wanted some for school the next day so he would leave it, and no sooner did he say this then I left the kitchen and he devoured and destroyed all that was left.
I try to keep as much of the food like cereal, bread, bagels etc... locked up so that he has limited access to snack type foods. I never thought we would live like this, but if locking food up ends the fights, it makes sense to lock it up. However, he checks the locks hundreds of times a day. If I unlock it to get the bread to make lunch, this weekend he has snuck behind me to find something in the lock box. It is exhausting. It has been a while since we have lived like this. I had actually been debating starting to leave the lock box unlocked because things had gotten so much better, so to go back to life like this is emotionally and physically exhausting. I have to be one step ahead, but it is one step ahead of someone's mental illness and obsessions.....that is hard to be.
In addition, he is talking about food non stop. He is talking about food so much that I am constantly feeling full. Not because I have eaten, but simply because if you talk about food enough, I am realizing that one becomes consistently not hungry.
I hate seeing my son like this. I hate seeing him struggle and I hate being so overwhelmed by his struggles.
There are no books that tell me how to wind my way through all of this and to find a path that will guide us all through this successfully. I constantly think how crazy it is to lock up food, but then again how crazy it is to not lock it up and to instead have constant turmoil. I have thought and debated about what would happen if we simply had no food that Matthew would crave, but if it isnt one thing it's another. Sure, he has a pecking order, carbs are at the top, but if we had no carbs he would drink a gallon of milk. If there was no milk, he would eat dried fruit by the truckload. If there was no dried fruit, he would eat cheese sticks. Whatever there is, the obsession is deep.
Hopefully soon the weather will change and the obsession will stop, or he will again find peace. Hopefully this is a little tiny blip on the radar and we are not entering a dark place. We have done so well for so long, I am not ready for major struggles again.
Unfortunately, when life is calm I forget all that can go into running our lives when the roller coaster of our lives gathers steam. I don't know exactly what is going on with Matthew but the last 3 days have been intense. He is so hyper focused on food right now, it is all he is thinking about, it is keeping him up at night, and overtaking his entire days. His obsession over food will always be more powerful than my ability to think one step ahead of him and prevent him from wreaking havoc in the house.
As he is getting older he is getting just that much more clever. He knows the complete and total inventory of every food item in our house and it seems like he waits with baited breath for me to walk away or leave something out or open. Twice this weekend he has asked for a drink which I have of course allowed, only to find him elbow deep in a container of chocolate or shoving candy in his mouth that I had mistakenly left out.
We made pumpkin bread and he told me that he was going to leave it alone. He wanted some for school the next day so he would leave it, and no sooner did he say this then I left the kitchen and he devoured and destroyed all that was left.
I try to keep as much of the food like cereal, bread, bagels etc... locked up so that he has limited access to snack type foods. I never thought we would live like this, but if locking food up ends the fights, it makes sense to lock it up. However, he checks the locks hundreds of times a day. If I unlock it to get the bread to make lunch, this weekend he has snuck behind me to find something in the lock box. It is exhausting. It has been a while since we have lived like this. I had actually been debating starting to leave the lock box unlocked because things had gotten so much better, so to go back to life like this is emotionally and physically exhausting. I have to be one step ahead, but it is one step ahead of someone's mental illness and obsessions.....that is hard to be.
In addition, he is talking about food non stop. He is talking about food so much that I am constantly feeling full. Not because I have eaten, but simply because if you talk about food enough, I am realizing that one becomes consistently not hungry.
I hate seeing my son like this. I hate seeing him struggle and I hate being so overwhelmed by his struggles.
There are no books that tell me how to wind my way through all of this and to find a path that will guide us all through this successfully. I constantly think how crazy it is to lock up food, but then again how crazy it is to not lock it up and to instead have constant turmoil. I have thought and debated about what would happen if we simply had no food that Matthew would crave, but if it isnt one thing it's another. Sure, he has a pecking order, carbs are at the top, but if we had no carbs he would drink a gallon of milk. If there was no milk, he would eat dried fruit by the truckload. If there was no dried fruit, he would eat cheese sticks. Whatever there is, the obsession is deep.
Hopefully soon the weather will change and the obsession will stop, or he will again find peace. Hopefully this is a little tiny blip on the radar and we are not entering a dark place. We have done so well for so long, I am not ready for major struggles again.
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