About Me

I am a single mom of three amazing boys!  All three of my sons entered my family through adoption.  All three of my boys have developmental disabilities. My oldest son, Matthew has been diagnosed with Fetal Alcohol Syndrome and Bipolar Disorder. David, my middle son, has a genetic condition, he has a duplication on his 15th chromosome which leads to autism like symptoms, seizures and learning challenges. My youngest son, Jacob has learning disabilities. Each of my children bring unique challengs to our family and also bring their own personality and joys to our everyday life!

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.

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!