There is so much that has been going on, I think the only thing that will make sense is to go child by child:
1. Jacob- How a child can have so much growth and yet be such a puzzle, I will never understand. We went to Jacob's kindergarten screening, and Jacob was petrified. I ended up staying with him for the beginning of the screening, but the teachers really wanted to see how he would do with me in the room next door so I was eventually able to make the split from him for a few minutes.
Jacob scored a dismal 10 out of 39 on his screening. While some of the things that he didn't get points for, Jacob can actually do, like identifying all of his colors, many of them he truly is struggling with. While he can jump and hop, he can't seem to do it on command. He also is unable to draw basic shapes such as a square, triangle or rectangle, and he could not identify 4 of the 6 letters they showed him.
I was able to speak to the kindergarten teachers and she said that most of the incoming kindegarteners are scoring in the 30's, a few are scoring lower, but all in the high 20's, and so she is eager to hear what happens when Jacob has his evaluation. I am counting the days until June 4 when Jacob will get a complete evaluation by an educational psychologist.
With Matthew and David, it was clear to me that there were global developmental issues, so I knew what path we would take and I could predict to some extent the services they would need. With Jacob, I maintain that he is a very smart little boy. There is some reason that he is unable to learn as quickly as he should be able to, and there is a reason he is struggling, but I don't believe that it is due to severe developmental issues, so I am hoping to gather information with the evaluation that will allow us to learn techniques to help Jacob gain the skills he needs.
2. David is doing well, but is definitely struggling with seizures. The only positive about this is that he seems to be able to tell me recently what is going on. Tonight we were at a wedding and David froze, and I could tell by looking at him that something was wrong. When I asked him what was wrong he told me for the first time that he didn't feel well. I picked him up and held him for a few minutes and then we sat while I rubbed his back. He kept telling me he wasn't feeling well, and that his head was bothering him. He wasn't able to say much else about what was wrong, but he was able to be comforted and used words rather than behaviors to show that he was uncomfortable.
He then started telling me that he wanted to go home. Thankfully, I convinced him to go outside for a few minutes and within 10 minutes of being outside, he returned to regular David again. He was able to share that not feeling good was scary, and I reassured him that I was with him.
It is a huge step to have him be able to communicate with me.
3. Matthew is back to being up and down. We have had some major struggles with tantrums again recently, which is hard to return to, but he is also having some moments where he seems to be more in touch with what he feels. He was able to tell me tonight that he is scared that he will have to go back to 4 Winds because he is scaring his brothers, and he and I were able to talk about what he needs to do to stay at home.
I am looking for a program for him for the Fall because his teachers feel that the middle school programs are not appropriate for him. This is very scary, and there don't appear to be nearly enough choices. I am feeling very up and down emotionally about all of this, and I know for Matthew this is also a nervous time. I told him that he would not be going to the middle school, because he was talking about it all the time and I felt like he had to know that he would be going somewhere else- it seemed unfair to have him getting excited about the middle school, with me knowing he wouldnt be going there.
I am hoping that his emotions settle a little more over the next few days, but I know the end of the year for him is always a stressful time, and with him graduating from 5th grade, that is likely making this a harder year for him and therefore he is having more outbursts.
Here is to more family time, and some answers about what is going on with all 3 boys!
Sunday, May 20, 2012
Saturday, April 21, 2012
CSE meetings, premeetings and too much for one mom
Once again my brain is full, and I feel that I am spinning my wheels and moving too quickly but going nowhere.
I am preparing for Jacob's transition to kindergarten CSE meeting and Matthew's transition to 6th grade CSE meeting and neither of these meetings is going to be easy.
As the director of a Nursery School, I feel like I have a good sense of what an "average" 4 or 5 year old is doing. I couldn't tell you when children start to write their names, but I can tell you that it is a rare child who leaves preschool not yet writing their name. There are no hard and fast rules for when children recognize letters and numbers and learn to count to 20, but these are things that most children are doing these days before they enter Kindergarten.
Some of the reasons that I kept Jacob out of kindergarten last year were because he was not yet emotionally at a place that I felt he was ready for kindergarten, but additionally, he didn't have the basic skills of recognizing any letters, writing any letters or counting to 10. Now, it is a year later, and I feel like we are not that much further ahead. While we have worked on him writing J-A-C-O-B, he struggles to write any of the 5 letters consistently except for the O. His teachers and I have worked with him on letter recognition, and while he at times can recognize the letters after working on them, a day later it is like he never learned them.
Additionally, I am taking Jacob to karate class 3 times each week, and each time it is hard to watch him struggle. So much of what they do in Karate is dependent on knowing your left and right- step back with your left foot, right foot forward, right hand out.......Jacob is very adept at covering up what he doesn't know. He watches all of the other kids and tries to figure out from them which hand is which. He delays moving until he can really see from the instructor what he is supposed to do, which puts him 3-5 seconds behind the rest of the kids in the class. Simply by being able to be alone with him at Karate, I have had the opportunity to see how hard it is for Jacob to do what many other kids just learn to do easily.
Jacob is currently receiving OT, speech therapy and one session per week of play therapy, and so I met with his therapists and his teachers a few weeks ago to gather information about where we thought Jacob was and how to best get him ready for Kindergarten. At the meeting the concern was raised that Jacob was having trouble with motor planning- essentially if Jacob is asked to do something-ie make a "j", what his brain tells his body to do is often misinterpreted, or creates a struggle for Jacob and the motor movements come out wrong. This makes life for Jacob hard, and the hardest part is that he is aware that what he is doing isn't correct but he cannot figure out how to fix and compensate for the motor planning challenges.
So now, I am preparing for Jacob's transition to Kindergarten meeting, and I know that I have a 5 year old who will not be as ready for kindergarten as many of the other children who are entering kindergarten with him. I hate to see him struggle, and would do anything to get him caught up and on target before he enters kindergarten, but unfortunately his learning challenges are going to take time and repetition to work through. I am hoping that at his CSE meeting we can get services approved for him for the summer time so that he can have more time to work on the necessary skills as he gets ready for kindergarten. Unfortunately, with budget cuts the way they are, I don't know if Jacob will get approved for services, so I have to work hard to make the case for why the services BEFORE he enters kindergarten are essential.
For Matthew's meeting I feel like I am getting the run around. After many phone calls, I now know that the district is thinking that it would be optimal for matthew to go to a program for 6th grade that is outside of the district. However, his meeting is on May 3, and I was supposed to have an opportunity to see the middle school program at Bethlehem middle school, and I want to see programs outside of the district so that I can see what options are available to me. However, it is now April 21, and after many, many phone calls I still have not had the chance to see any programs for matthew. This leaves me very little time to go see programs and make decisions for matthew.
I don't know exactly why the district feels that there is not a class for Matthew at the district Middle school- it looks like from what I have read that he would have to spend a portion of his day in the mainstream classes, and Matthew has never done this because he is not ready to succeed in mainstream classes cognitively or behaviorally, however I am surprised that the district doesn't have a special education class that would allow Matthew to be at the middle school without mainstreaming.
Unfortunately, the more time goes on before I have his meeting, and without being able to see the classes that are available, the more my anxiety is increasing. It is a challenge to know how often to call the school, and to reach out and remind them that I would like to visit possible classes for Matthew, with also recognizing that I know that the district staff is dealing with many families, and trying to balance the needs of everyone.
Patience is not something I am very good at, and especially as my anxiety increases, my ability to be patient decreases, but I am working hard to remember that in good time, decisions will be made, and that I am working with a district of full of people who I trust and have worked with successfully in the past. Here is to knowing that decisions will be made, and both boys will get the support they need in good time.
I am preparing for Jacob's transition to kindergarten CSE meeting and Matthew's transition to 6th grade CSE meeting and neither of these meetings is going to be easy.
As the director of a Nursery School, I feel like I have a good sense of what an "average" 4 or 5 year old is doing. I couldn't tell you when children start to write their names, but I can tell you that it is a rare child who leaves preschool not yet writing their name. There are no hard and fast rules for when children recognize letters and numbers and learn to count to 20, but these are things that most children are doing these days before they enter Kindergarten.
Some of the reasons that I kept Jacob out of kindergarten last year were because he was not yet emotionally at a place that I felt he was ready for kindergarten, but additionally, he didn't have the basic skills of recognizing any letters, writing any letters or counting to 10. Now, it is a year later, and I feel like we are not that much further ahead. While we have worked on him writing J-A-C-O-B, he struggles to write any of the 5 letters consistently except for the O. His teachers and I have worked with him on letter recognition, and while he at times can recognize the letters after working on them, a day later it is like he never learned them.
Additionally, I am taking Jacob to karate class 3 times each week, and each time it is hard to watch him struggle. So much of what they do in Karate is dependent on knowing your left and right- step back with your left foot, right foot forward, right hand out.......Jacob is very adept at covering up what he doesn't know. He watches all of the other kids and tries to figure out from them which hand is which. He delays moving until he can really see from the instructor what he is supposed to do, which puts him 3-5 seconds behind the rest of the kids in the class. Simply by being able to be alone with him at Karate, I have had the opportunity to see how hard it is for Jacob to do what many other kids just learn to do easily.
Jacob is currently receiving OT, speech therapy and one session per week of play therapy, and so I met with his therapists and his teachers a few weeks ago to gather information about where we thought Jacob was and how to best get him ready for Kindergarten. At the meeting the concern was raised that Jacob was having trouble with motor planning- essentially if Jacob is asked to do something-ie make a "j", what his brain tells his body to do is often misinterpreted, or creates a struggle for Jacob and the motor movements come out wrong. This makes life for Jacob hard, and the hardest part is that he is aware that what he is doing isn't correct but he cannot figure out how to fix and compensate for the motor planning challenges.
So now, I am preparing for Jacob's transition to Kindergarten meeting, and I know that I have a 5 year old who will not be as ready for kindergarten as many of the other children who are entering kindergarten with him. I hate to see him struggle, and would do anything to get him caught up and on target before he enters kindergarten, but unfortunately his learning challenges are going to take time and repetition to work through. I am hoping that at his CSE meeting we can get services approved for him for the summer time so that he can have more time to work on the necessary skills as he gets ready for kindergarten. Unfortunately, with budget cuts the way they are, I don't know if Jacob will get approved for services, so I have to work hard to make the case for why the services BEFORE he enters kindergarten are essential.
For Matthew's meeting I feel like I am getting the run around. After many phone calls, I now know that the district is thinking that it would be optimal for matthew to go to a program for 6th grade that is outside of the district. However, his meeting is on May 3, and I was supposed to have an opportunity to see the middle school program at Bethlehem middle school, and I want to see programs outside of the district so that I can see what options are available to me. However, it is now April 21, and after many, many phone calls I still have not had the chance to see any programs for matthew. This leaves me very little time to go see programs and make decisions for matthew.
I don't know exactly why the district feels that there is not a class for Matthew at the district Middle school- it looks like from what I have read that he would have to spend a portion of his day in the mainstream classes, and Matthew has never done this because he is not ready to succeed in mainstream classes cognitively or behaviorally, however I am surprised that the district doesn't have a special education class that would allow Matthew to be at the middle school without mainstreaming.
Unfortunately, the more time goes on before I have his meeting, and without being able to see the classes that are available, the more my anxiety is increasing. It is a challenge to know how often to call the school, and to reach out and remind them that I would like to visit possible classes for Matthew, with also recognizing that I know that the district staff is dealing with many families, and trying to balance the needs of everyone.
Patience is not something I am very good at, and especially as my anxiety increases, my ability to be patient decreases, but I am working hard to remember that in good time, decisions will be made, and that I am working with a district of full of people who I trust and have worked with successfully in the past. Here is to knowing that decisions will be made, and both boys will get the support they need in good time.
Friday, April 13, 2012
Vacation week
It is Friday of vacation week and I am struggling. we have had a good break, we had Passover with family and then we took an overnight trip to Mystic Seaport. unfortunately we are at the time of family togetherness where I cannot stand to be asked the same question again. I simply can't talk about the traffic wires, I can't pretend to wonder what the black boxes are that are on the traffic wires and why some have one black box and others two.
I can't talk about what's for dinner before we eat breakfast, and again after breakfast and before lunch, and after lunch and then every 15 minutes from 3:00 on. I can't answer the same questions or have the same circular conversations, my ears are tired. I hate that I am out of patience with Matthew because he s doing better than he has done in over a year, so really I should simply enjoy this calm ride and a huge part of me knows that and I am trying hard.
However, as the only adult who can answer him, and given the fact that he is infinitely more insistent than I am patient, it is my goal to practice deep breathing over the next 48 hours before he returns to school. I am planning to up the fun over the next two days and end vacation week on a high, and remind myself that his behaviors are not his fault and his questions are probably more intense for him than they are for me.
Here's to a good final 2 days of spring break!
Friday, March 30, 2012
David update
For the past few weeks David has been struggling. It is so hard to know when he is having seizures, but he seems to have a pattern of symptoms that let me know that something is going on . He has been doing a lot of nighttime vomitting which is often a seizure symptom for him, and so I have been watching him very closely. On Wednesday, as it was time for David to get on the bus, he started to cry and say he wasn't going on the bus. It was late, and I had very little time to convince him, so I just spoke to him quietly, and held his hand while we walked out the door and down the driveway. As he got on the bus, I watched him pull his hood over his head and punch himself in the head 3 times, and then slam his head into the bus window.
I wanted to run after the bus, take him off the bus and hold him tight, but the bus had driven away, so all I could do was call his teacher and let her know that I was worried about him. She promised to check on him and suggested that maybe he needed a break from the bus.
For the past few weeks David has been struggling at school in the mornings. While he has come a long way in being able to write letters and words, he goes from being unable to write at all in the morning from 9-10 or 10:30, to being able to write a full sentence by the time it is afternoon.
I know I would find this maddening- to not be able to count on my body to do the things my brain tells it any time I want would be beyond frustrating. Unfortunately, we don't know what is going on in David's head, and we cannot yet find any medication that has helped him to have more consistent skills throughout the day.
The teacher was hoping that by driving him to school we might be able to see if changing his routine would have any impact on his skills. Thursday morning I drove David to school and used that opportunity to talk about the bus. After lots of questioning, David said that he didnt like the bus because the aide holds his legs. He wouldn't/couldn't give me any more information, but I knew I had to figure out more about what was going on.
I contacted the head of transportation who watched the video of the bus, he confirmed that David was struggling, but also said that he was proud of all that the bus aide was doing to help David. The head of transportation invited me to come and see the video to see if I had any thoughts for how to help David succeed. My heart aches for what I saw of David on the bus, and my fondness for the bus aide grew! I watched video of 2 mornings of David on the bus, his body tight, fists clenched, making unusual sounds, and banging his head with his fists, slamming his head into the window, and growling. Throughout all of this, the aide supported David. She put her hand on his head when he went to bang it into the window. She told him he would hurt his head. She rubbed his back and talked quietly to him, all while also holding a conversation with the other child on the bus.
The video of David has my heart broken. I don't know what was wrong with him while he was on the bus. I know that the sounds he was making and his body posture were concerning. I know that he "didn't seem to be present" but I can't say for certain that he was having a seizure. He hit his head with his fists, and slammed his head into the window for what seemed like forever on the video. He growled, and made gutteral sounds and didn't speak much the entire time.
Today he came home and he and I had some time alone together. I hoped that I could use this time to talk to him about the bus, but he refused to speak above a whisper to me. We ended up snuggling on the couch and playing a game on the IPAD, but he struggled more with the game than I had expected and he seemed to become frustrated- David is a wizard at puzzles, but today he couldn't seem to put the 3 puzzle pieces into the puzzle on the game.
Then as we were leaving to pick up Matthew and Jacob, David had an accident, his whole body was tight which made it hard for him to walk into the YMCA to get Matthew. We then went to his school to pick up Jacob who was on a playdate and David refused to get out of the car. He sat in the car for 30 minutes while the other kids all played and laughed. Whenever I opened the car door, he quickly closed it again. He looked drawn and exhausted. As we left the school, I found David had shredded every book we had in the car. He didn't seem angry, just simply methodical in the process of shredding every single page of every single book.
After we got home I found that David had another accident, so we did a quick bath and he got ready for bed. He was quiet, but seemed more alert than he had been for the past few hours.
I am happy that it is the weekend and I will have lots of time with David to observe him and monitor him to see if I can gain more insight into what is going on. The head of transportation is going to monitor David all of next week on the bus. It is so hard to not be able to determine what exactly is going on. There is no way to know what is happening inside his brain, and no way for him to tell us.
We are seeing the neurologist again next Friday, but even the neurologist is unsure what exactly is happening. Treatment is more about trial and error, all with the possibility that whatever treatment we try will have no effect and that whatever is going on will simply end on its own.
I wanted to run after the bus, take him off the bus and hold him tight, but the bus had driven away, so all I could do was call his teacher and let her know that I was worried about him. She promised to check on him and suggested that maybe he needed a break from the bus.
For the past few weeks David has been struggling at school in the mornings. While he has come a long way in being able to write letters and words, he goes from being unable to write at all in the morning from 9-10 or 10:30, to being able to write a full sentence by the time it is afternoon.
I know I would find this maddening- to not be able to count on my body to do the things my brain tells it any time I want would be beyond frustrating. Unfortunately, we don't know what is going on in David's head, and we cannot yet find any medication that has helped him to have more consistent skills throughout the day.
The teacher was hoping that by driving him to school we might be able to see if changing his routine would have any impact on his skills. Thursday morning I drove David to school and used that opportunity to talk about the bus. After lots of questioning, David said that he didnt like the bus because the aide holds his legs. He wouldn't/couldn't give me any more information, but I knew I had to figure out more about what was going on.
I contacted the head of transportation who watched the video of the bus, he confirmed that David was struggling, but also said that he was proud of all that the bus aide was doing to help David. The head of transportation invited me to come and see the video to see if I had any thoughts for how to help David succeed. My heart aches for what I saw of David on the bus, and my fondness for the bus aide grew! I watched video of 2 mornings of David on the bus, his body tight, fists clenched, making unusual sounds, and banging his head with his fists, slamming his head into the window, and growling. Throughout all of this, the aide supported David. She put her hand on his head when he went to bang it into the window. She told him he would hurt his head. She rubbed his back and talked quietly to him, all while also holding a conversation with the other child on the bus.
The video of David has my heart broken. I don't know what was wrong with him while he was on the bus. I know that the sounds he was making and his body posture were concerning. I know that he "didn't seem to be present" but I can't say for certain that he was having a seizure. He hit his head with his fists, and slammed his head into the window for what seemed like forever on the video. He growled, and made gutteral sounds and didn't speak much the entire time.
Today he came home and he and I had some time alone together. I hoped that I could use this time to talk to him about the bus, but he refused to speak above a whisper to me. We ended up snuggling on the couch and playing a game on the IPAD, but he struggled more with the game than I had expected and he seemed to become frustrated- David is a wizard at puzzles, but today he couldn't seem to put the 3 puzzle pieces into the puzzle on the game.
Then as we were leaving to pick up Matthew and Jacob, David had an accident, his whole body was tight which made it hard for him to walk into the YMCA to get Matthew. We then went to his school to pick up Jacob who was on a playdate and David refused to get out of the car. He sat in the car for 30 minutes while the other kids all played and laughed. Whenever I opened the car door, he quickly closed it again. He looked drawn and exhausted. As we left the school, I found David had shredded every book we had in the car. He didn't seem angry, just simply methodical in the process of shredding every single page of every single book.
After we got home I found that David had another accident, so we did a quick bath and he got ready for bed. He was quiet, but seemed more alert than he had been for the past few hours.
I am happy that it is the weekend and I will have lots of time with David to observe him and monitor him to see if I can gain more insight into what is going on. The head of transportation is going to monitor David all of next week on the bus. It is so hard to not be able to determine what exactly is going on. There is no way to know what is happening inside his brain, and no way for him to tell us.
We are seeing the neurologist again next Friday, but even the neurologist is unsure what exactly is happening. Treatment is more about trial and error, all with the possibility that whatever treatment we try will have no effect and that whatever is going on will simply end on its own.
Sunday, March 4, 2012
my thoughts
I often sit to write a blog post when I have too much on my mind and I need to organize it. This has been a very challenging week. We had a few rough Matthew days, and I had actually put in a call to see if Matthew could go back to Healy house, a 3 week respite program. I was at the point where I needed some time that I could be guaranteed that we wouldn't have to deal with a tantrum, and I was watching Jacob begin to struggle again with Matthew. I felt like a break for all of us was in order and after Matthew put a hole in the bathroom door, I put in a request for a respite at Healy House. Unfortunately the wait was 2-3 weeks, so while we were waiting life proceeded as normal.
The rule in our house for a long time has been that Matthew gets a certain amount of snacks in a day, and if he eats food that he is not supposed to, then he loses his snacks in the afternoon. For example, on Wednesday Matthew ate 3 bowls of cereal- I had left one out for each boy for breakfast and he ate all 3- and so I told him that he could not have a snack after school, he would be allowed fruit or vegetables, but no treats.
Matthew of course became upset, but was less upset than usual, and this upset occurred before the school bus came. Matthew began to threaten that he wasn't taking the bus, and I figured when the bus pulled up either he would get on the bus, or he wouldn't. When the bus came, it was pretty obvious to me that he wasn't going to get on, so I told the bus to go ahead. The driver called out to Matthew that he should come and tried to encourage him. Matthew then went into the garage and was kicking some boxes that were in the garage. His bus aide came into the garage and told Matthew to stop kicking the boxes, and that he was kicking my stuff. Matthew replied, as only an angry kid can, that it was "HIS stuff". What happened next shocked and sickened me. The bus aide got in Matthew's face and pointed her finger at him, and stated, "I am saying this in front of your mom, if you were my kid I would beat you to death and I wouldn't care if that meant I would go to jail".
Of all the times, in all the world that I hoped Matthew would be confused, or wouldn't understand what had happened, this was the time I would have prayed the hardest. No one in the world deserves to hear such a thing, especially not from someone who they think cares about them.
I said nothing- whenever I think about this, that is my biggest regret-I wish Matthew had heard me say something to the bus aide, so he knew that I heard what she said and it made me mad.
As part of the investigation, the principal talked to Matthew later in the day about what had happened, and he was able to tell her pretty much exactly what occurred- the only thing that he said differently is that he says the aide said she would "beat him down". not better or worse, just a different thing to say.
The head of transportation and the school district is doing an investigation into what happened and will take whatever action it deems appropriate. I hate to think that any other child will have to deal with this woman again, and I truly hate to think what this woman may have been saying to my son all year long, but it is now up to the district what happens. I have been reassured that this woman will not be on Matthew or David's bus again, and so I have done all I can to ensure my boys are safe.
As all of this was going on, I met with the social worker who was seeing Jacob. Apparently he is pretty consistently putting people in cages while he plays. He talks about feeling nervous and scared. Then last Wednesday when he was asked to draw a picture of his family Jacob drew just a picture of his Papa and a motorcycle. The entire rest of the class drew their family, Jacob was clear that he was requested to draw his family, and yet all he drew was his Papa. I know that Jacob has some wonderful, wonderful support, and I trust that he is a very resilient child, but it is sad to hear that on the same day Matthew's world crumbled a little, Jacob's world was also crumbling.
On Friday I got a call that Healy house had an opening, but after all that Matthew had been through I decided I simply couldn't send him to Healy House right now. He needed the security of being home, and of feeling loved. I know that I have made the right decision, because this weekend Matthew has refused to be too far from my side. He had both of his reshab therapists come and usually he would go out with them which allows us all a break. This weekend it took a lot of coaxing for me to get him to even go with them for 20 minutes, and even then he was anxious. The fact that one person could create such havoc with such hateful words sickens me.
On Friday I also had a meeting with Matthew's classroom staff. I felt like it was important that they hear 2 things from me. The first thing is that when I set out to adopt children, I planned to adopt typically developing children. That said, I wouldn't change my life for anything. However, there is something to be said for someone who emotionally sets out to adopt children with special needs, and someone who is surprised by the needs of the children they birth or adopt. I am still often going through periods of grief and acceptance and often this is a challenge for those who work with my boys as I struggle emotionally to meet the needs of my boys.
The second thing I felt they needed to know is that in the Skills level self contained classes grades 1st-5th in Bethlehem there are 20 kids. Of those kids, many mainstream for some portion of the day into general education classes. 2 of these 20 children live in MY house! That is 1/10 of the children in skills classes live under the same roof and neither of my boys mainstream at all.
In each of the skills classes there are 10 kids, a teacher, 3-4 aides, AND a speech therapist, OT, PT, and a social worker. At any one time, some of the kids have mainstreamed or are in a therapy session out of the room. In my house there are TWO kids with intense special needs, 1 child who receives OT, Speech and Social work and 1 mom! I am pretty outnumbered!
I am working on giving myself a break. I need to again recognize that I am one person, who can only do so much. When our world was rocked this week, I was able to close rank and pull my boys close and we are stronger because of it.
In positive news, David has a true friendship. He has mentioned missing a friend who was on vacation this week and has asked about him a lot. He was aware that his friend would not be at school last week and was upset, and was aware tonight that his friend will be back at school tomorrow and went to bed very excited to see his buddy. That is huge growth for David and certainly worth celebrating!
The rule in our house for a long time has been that Matthew gets a certain amount of snacks in a day, and if he eats food that he is not supposed to, then he loses his snacks in the afternoon. For example, on Wednesday Matthew ate 3 bowls of cereal- I had left one out for each boy for breakfast and he ate all 3- and so I told him that he could not have a snack after school, he would be allowed fruit or vegetables, but no treats.
Matthew of course became upset, but was less upset than usual, and this upset occurred before the school bus came. Matthew began to threaten that he wasn't taking the bus, and I figured when the bus pulled up either he would get on the bus, or he wouldn't. When the bus came, it was pretty obvious to me that he wasn't going to get on, so I told the bus to go ahead. The driver called out to Matthew that he should come and tried to encourage him. Matthew then went into the garage and was kicking some boxes that were in the garage. His bus aide came into the garage and told Matthew to stop kicking the boxes, and that he was kicking my stuff. Matthew replied, as only an angry kid can, that it was "HIS stuff". What happened next shocked and sickened me. The bus aide got in Matthew's face and pointed her finger at him, and stated, "I am saying this in front of your mom, if you were my kid I would beat you to death and I wouldn't care if that meant I would go to jail".
Of all the times, in all the world that I hoped Matthew would be confused, or wouldn't understand what had happened, this was the time I would have prayed the hardest. No one in the world deserves to hear such a thing, especially not from someone who they think cares about them.
I said nothing- whenever I think about this, that is my biggest regret-I wish Matthew had heard me say something to the bus aide, so he knew that I heard what she said and it made me mad.
As part of the investigation, the principal talked to Matthew later in the day about what had happened, and he was able to tell her pretty much exactly what occurred- the only thing that he said differently is that he says the aide said she would "beat him down". not better or worse, just a different thing to say.
The head of transportation and the school district is doing an investigation into what happened and will take whatever action it deems appropriate. I hate to think that any other child will have to deal with this woman again, and I truly hate to think what this woman may have been saying to my son all year long, but it is now up to the district what happens. I have been reassured that this woman will not be on Matthew or David's bus again, and so I have done all I can to ensure my boys are safe.
As all of this was going on, I met with the social worker who was seeing Jacob. Apparently he is pretty consistently putting people in cages while he plays. He talks about feeling nervous and scared. Then last Wednesday when he was asked to draw a picture of his family Jacob drew just a picture of his Papa and a motorcycle. The entire rest of the class drew their family, Jacob was clear that he was requested to draw his family, and yet all he drew was his Papa. I know that Jacob has some wonderful, wonderful support, and I trust that he is a very resilient child, but it is sad to hear that on the same day Matthew's world crumbled a little, Jacob's world was also crumbling.
On Friday I got a call that Healy house had an opening, but after all that Matthew had been through I decided I simply couldn't send him to Healy House right now. He needed the security of being home, and of feeling loved. I know that I have made the right decision, because this weekend Matthew has refused to be too far from my side. He had both of his reshab therapists come and usually he would go out with them which allows us all a break. This weekend it took a lot of coaxing for me to get him to even go with them for 20 minutes, and even then he was anxious. The fact that one person could create such havoc with such hateful words sickens me.
On Friday I also had a meeting with Matthew's classroom staff. I felt like it was important that they hear 2 things from me. The first thing is that when I set out to adopt children, I planned to adopt typically developing children. That said, I wouldn't change my life for anything. However, there is something to be said for someone who emotionally sets out to adopt children with special needs, and someone who is surprised by the needs of the children they birth or adopt. I am still often going through periods of grief and acceptance and often this is a challenge for those who work with my boys as I struggle emotionally to meet the needs of my boys.
The second thing I felt they needed to know is that in the Skills level self contained classes grades 1st-5th in Bethlehem there are 20 kids. Of those kids, many mainstream for some portion of the day into general education classes. 2 of these 20 children live in MY house! That is 1/10 of the children in skills classes live under the same roof and neither of my boys mainstream at all.
In each of the skills classes there are 10 kids, a teacher, 3-4 aides, AND a speech therapist, OT, PT, and a social worker. At any one time, some of the kids have mainstreamed or are in a therapy session out of the room. In my house there are TWO kids with intense special needs, 1 child who receives OT, Speech and Social work and 1 mom! I am pretty outnumbered!
I am working on giving myself a break. I need to again recognize that I am one person, who can only do so much. When our world was rocked this week, I was able to close rank and pull my boys close and we are stronger because of it.
In positive news, David has a true friendship. He has mentioned missing a friend who was on vacation this week and has asked about him a lot. He was aware that his friend would not be at school last week and was upset, and was aware tonight that his friend will be back at school tomorrow and went to bed very excited to see his buddy. That is huge growth for David and certainly worth celebrating!
Tuesday, February 14, 2012
when push comes to shove, they are my boys
So the wall is down for Matthew......and I don't really know how I feel. I guess I need to start by filling you in on what has been going on.
When I get my mind set to something, I have to make it happen. Last Wednesday, I went to Glenmont to pick Matthew up, and I went in his room to see a map he made. That was when I saw the divider and I haven't been able to get it out of my mind since then.
I called a local neuropsychologist who Matthew saw over the summer to see if she could go in to Matthew's school and observe matthew in his classroom and give me a sense of how he was doing. I wanted to know her thoughts on the divider, and how matthew was doing in his current placement.
Today I spoke to the neuropsychologist after she did a one hour observation of Matthew in 2 thirty minute blocks. As I heard her report on her observations, my heart was in my throat and I wanted to run and grab Matthew from his classroom. My emotions right now are very raw. It is a struggle to be with matthew- he spins in circles a lot recently, is often bothering his brothers, can be set off quickly over nothing, makes a lot of noises, and says a lot of the same things over and over again, and while all of this is going on, he typically is playing the song "i whip my hair back and forth" over and over again loudly in the background- essentially, it is enough to make me crazy.
however, I am his mom- this is a position paid in hugs and kisses, all while I am trying to do the laundry, get homework done, make dinner, and take care of 2 other boys. I don't have a team of therapists working with me. I don't have a classroom of aides working with me. It is just me.
I was heartbroken to hear that while the class was listening to read aloud on the carpet, Matthew was at his desk. Sure, he was "included", but if you are the ONLY one at your desk, what does that say to the others?
I was saddened to hear that the reason they were using the divider is because Matthew responds to everything and everyone and often misreads things- as the teacher said, "the wall protects him from himself". How can anyone respond to everything and everyone? But Matthew does- the sound of kids breathing, kids tapping their pencils, the clock ticking, the wind blowing- EVERYTHING in the world is a distraction for Matthew.
The wall protects him from himself.......That makes a lot of sense to me, and I want to scream and kick and cry. I hate that! It breaks my heart.
The benefit of the wall, was that Matthew was having fewer confrontations with peers- I would counter that he was having fewer interactions with peers, and therefore fewer confrontations.
I want them to help Matthew- teach him to recognize when he needs time in a quieter space- teach him when being behind a "wall", real or otherwise would help him to to function.
I want there to be a plan to help him gain social skills. I want the staff to help him grow and to get as much as possible out of his school time.
It isn't enough that Matthew is spending his days at school. I have to know what he is doing, and I have to trust those who are caring for him. I have to be able to trust that they are caring for Matthew and pushing him to his limits socially, emotionally, and academically. I feel like each of these areas are not being planned for effectively right now, and maybe not for the past month or so.
It is exhausting to be so on top of everything for Matthew. I wish I had known more about what was going on for Matthew. I don't even feel like I knew what questions to ask, but I do know that we owe Matthew more than what we have provided for him, and I am hoping that we can have a CSE meeting in the very near future so that we can address all of Matthew's needs. This may include having a quiet space created for Matthew, where he can be taught to go when he needs a break to learn or focus. It may mean that we plan to meet more often to discuss our plans for Matthew. It may mean a lot of things. I know that Matthew's team is a smart team of dedicated professionals, and I know that they care for Matthew a lot. I am committed to working together to give Matthew the best, but first I have to cope with the emotions I am feeling and refuel my tank so that I can effectively advocate for matthew.
When I get my mind set to something, I have to make it happen. Last Wednesday, I went to Glenmont to pick Matthew up, and I went in his room to see a map he made. That was when I saw the divider and I haven't been able to get it out of my mind since then.
I called a local neuropsychologist who Matthew saw over the summer to see if she could go in to Matthew's school and observe matthew in his classroom and give me a sense of how he was doing. I wanted to know her thoughts on the divider, and how matthew was doing in his current placement.
Today I spoke to the neuropsychologist after she did a one hour observation of Matthew in 2 thirty minute blocks. As I heard her report on her observations, my heart was in my throat and I wanted to run and grab Matthew from his classroom. My emotions right now are very raw. It is a struggle to be with matthew- he spins in circles a lot recently, is often bothering his brothers, can be set off quickly over nothing, makes a lot of noises, and says a lot of the same things over and over again, and while all of this is going on, he typically is playing the song "i whip my hair back and forth" over and over again loudly in the background- essentially, it is enough to make me crazy.
however, I am his mom- this is a position paid in hugs and kisses, all while I am trying to do the laundry, get homework done, make dinner, and take care of 2 other boys. I don't have a team of therapists working with me. I don't have a classroom of aides working with me. It is just me.
I was heartbroken to hear that while the class was listening to read aloud on the carpet, Matthew was at his desk. Sure, he was "included", but if you are the ONLY one at your desk, what does that say to the others?
I was saddened to hear that the reason they were using the divider is because Matthew responds to everything and everyone and often misreads things- as the teacher said, "the wall protects him from himself". How can anyone respond to everything and everyone? But Matthew does- the sound of kids breathing, kids tapping their pencils, the clock ticking, the wind blowing- EVERYTHING in the world is a distraction for Matthew.
The wall protects him from himself.......That makes a lot of sense to me, and I want to scream and kick and cry. I hate that! It breaks my heart.
The benefit of the wall, was that Matthew was having fewer confrontations with peers- I would counter that he was having fewer interactions with peers, and therefore fewer confrontations.
I want them to help Matthew- teach him to recognize when he needs time in a quieter space- teach him when being behind a "wall", real or otherwise would help him to to function.
I want there to be a plan to help him gain social skills. I want the staff to help him grow and to get as much as possible out of his school time.
It isn't enough that Matthew is spending his days at school. I have to know what he is doing, and I have to trust those who are caring for him. I have to be able to trust that they are caring for Matthew and pushing him to his limits socially, emotionally, and academically. I feel like each of these areas are not being planned for effectively right now, and maybe not for the past month or so.
It is exhausting to be so on top of everything for Matthew. I wish I had known more about what was going on for Matthew. I don't even feel like I knew what questions to ask, but I do know that we owe Matthew more than what we have provided for him, and I am hoping that we can have a CSE meeting in the very near future so that we can address all of Matthew's needs. This may include having a quiet space created for Matthew, where he can be taught to go when he needs a break to learn or focus. It may mean that we plan to meet more often to discuss our plans for Matthew. It may mean a lot of things. I know that Matthew's team is a smart team of dedicated professionals, and I know that they care for Matthew a lot. I am committed to working together to give Matthew the best, but first I have to cope with the emotions I am feeling and refuel my tank so that I can effectively advocate for matthew.
Thursday, February 9, 2012
so much going on
Life at the Bloom house has been somewhat status quo recently.We are having our ups and downs, some days are easier than others, but for the most part, we are finding our way and it has been nice to have all 3 boys home together for the past month.
We are getting used to and enjoying having our new respite workers. Peggy comes to be with Matthew on Saturdays- they spend time together, play ball, and she is a wonderful support to him. Having her come allows David, Jacob and I the ability to get a break from Matthew's intensity. We can grocery shop, hang with friends, or just be home and it can be quiet for the 3 of us. Matthew truly depends on structure, and the slightest change in routine can make it hard for him to continue. He doesn't react to the change with a tantrum, however, when there is too much change going on, he is likely to tantrum over something else because the change has been hard for him to handle.
David is enjoying having a respite worker on Monday and Tuesday nights. Joceyln is truly wonderful. She understands David and appreciates his quiet nature. When he is over the top bonkers, Jocelyn has learned to help David calm down. She reads with him, they build legos, she enjoys being with him, and he LOVES her after just 2 weeks.
I am currently waging battle on two fronts.
1. I am looking for a psychiatrist for Matthew who I trust and respect. His current psychiatrist is not someone I have ever felt understands me, but like most things with Matthew, he is caught between two worlds- the world of children with psychiatric needs, and the world of children with developmental disabilities. The local psychiatrists feel like due to Matthew's IQ he needs to work with a pschiatrist who understands children with developmental delays. The only psychiatrist who works with children with developmental delays is the one we are currently seeing, so it is a catch 22.
2. I am once again feeling torn between supporting my son and silently trusting the school district. Since last year Matthew has sat behind a half wall in his classroom, so he can best focus without distractions or distracting other children. As I have been evaluating Matthew this year, I realize that he often does not want to go to school, and I have to agree I would not want to go to school to sit by myself all day. I would feel very disheartened sitting alone on one side of a wall. I met with his teachers and whole team a few weeks back and asked that they remove the wall. Now more than 3 weeks have gone by and the dividing wall is still there.
In my opinoin, if Matthew needs to be alone in a classroom to learn, he is not in the right setting. Every person who walks into matthew's room- parents, kids, teachers, adults, sees him alone on the side of a wall. This can't be good for his self esteem.
A week from today I will be meeting with Matthew's team and the Chairperson for the Committee on Special Education for his school. I feel passionately that i have to ensure that this wall comes down so that we can accurately assess what Matthew needs and how we can best help him, without ostracizing him or making him feel alone.
We are getting used to and enjoying having our new respite workers. Peggy comes to be with Matthew on Saturdays- they spend time together, play ball, and she is a wonderful support to him. Having her come allows David, Jacob and I the ability to get a break from Matthew's intensity. We can grocery shop, hang with friends, or just be home and it can be quiet for the 3 of us. Matthew truly depends on structure, and the slightest change in routine can make it hard for him to continue. He doesn't react to the change with a tantrum, however, when there is too much change going on, he is likely to tantrum over something else because the change has been hard for him to handle.
David is enjoying having a respite worker on Monday and Tuesday nights. Joceyln is truly wonderful. She understands David and appreciates his quiet nature. When he is over the top bonkers, Jocelyn has learned to help David calm down. She reads with him, they build legos, she enjoys being with him, and he LOVES her after just 2 weeks.
I am currently waging battle on two fronts.
1. I am looking for a psychiatrist for Matthew who I trust and respect. His current psychiatrist is not someone I have ever felt understands me, but like most things with Matthew, he is caught between two worlds- the world of children with psychiatric needs, and the world of children with developmental disabilities. The local psychiatrists feel like due to Matthew's IQ he needs to work with a pschiatrist who understands children with developmental delays. The only psychiatrist who works with children with developmental delays is the one we are currently seeing, so it is a catch 22.
2. I am once again feeling torn between supporting my son and silently trusting the school district. Since last year Matthew has sat behind a half wall in his classroom, so he can best focus without distractions or distracting other children. As I have been evaluating Matthew this year, I realize that he often does not want to go to school, and I have to agree I would not want to go to school to sit by myself all day. I would feel very disheartened sitting alone on one side of a wall. I met with his teachers and whole team a few weeks back and asked that they remove the wall. Now more than 3 weeks have gone by and the dividing wall is still there.
In my opinoin, if Matthew needs to be alone in a classroom to learn, he is not in the right setting. Every person who walks into matthew's room- parents, kids, teachers, adults, sees him alone on the side of a wall. This can't be good for his self esteem.
A week from today I will be meeting with Matthew's team and the Chairperson for the Committee on Special Education for his school. I feel passionately that i have to ensure that this wall comes down so that we can accurately assess what Matthew needs and how we can best help him, without ostracizing him or making him feel alone.
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