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!

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.

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!

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.

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.

update

On January 10, Matthew was released from Healy House. It is now the 22 of January, and I can't believe I am writing this, but all in all things have been ok. I have made many changes to our lives, and I am thankful to the people who have supported my family in our recent success.

I decided that my goal upon Matthew's discharge was to keep him home until at least February 10. We had not spent a full month together as a family since October, and I felt like the month was an important committment to make to my family. I also knew that I could only reach this goal if I put some things in place. The easiest and most likely way for us to succeed was for me to have help at home. Matthew had struggled at the hospital, which often had a ratio of 7 kids to 3 adults. He had struggled at Healy House, which had a ratio of 8 kids to 3 adults, so it made little sense for me to think that I could handle him at home with a ratio of 3 kids to 1 adult.

I hired a babysitter to be at the house with us every night, and if I did not have access to a sitter, I asked my parents if they could help on Friday nights a few times each month so that there was always another adult to help us out. The babysitter and I would be here with the children together, but when my parents came, they would either take David and Jacob, and I would have 1:1 time with Matthew, or they would take Matthew and I would have a quiet night with David and Jacob.

At first it was very hard for me to get used to having a sitter in the house with me. I had to communicate with the sitter, and the children had to figure out who to listen to. I had to be comfortable asking for help and trusting the babysitter to follow our routine. However, the first time Matthew tantrummed, and the babysitter was here, I knew I had made a great decision. After matthew was done tantrumming and I came downstairs, I realized that the little boys had reacted completely differently to Matthew's tantrum because they had an adult who they trusted to care for them while Matthew was upset. They looked busy and happy, even though matthew had just been upset. They were playing and laughing and seemed much less impacted by the tantrum. To me this was very important. Matthew, being matthew, is going to tantrum, it would be unrealistic for me not to expect that, however, I needed to limit the effect these tantrums were having on the little boys, and by having a sitter in the house, I was able to do
that.

In addition to the sitter, I have promised myself that if I am alone with the boys and there is a problem, I will call for help. The other night we were out to dinner and Matthew got upset and after trying to keep him calm, and starting to drive home, I realized that it had just gotten to be too much. The little boys now needed time from an adult, and Matthew was not settling quickly. In the past I would have hemmed and hawed and hoped that the tantrum would end, but this time I called my friend. Worst case scenario, I would bother her and she would not be needed. Best case scenario, she would come over, help deescalate the situation and then could head for home. What ended up happening was even better than I thought. She came and got the little guys ready for bed. I stayed with Matthew who after having some medicine was settling down, and then as soon as the upset started, Matthew stopped the tantrumming. Meg and I tucked the kids into bed, and then chatted for a while. Not only did Meg help the boys feel better, but I had an adult who had seen what happened and could talk it through with me. I was able to end the night feeling positive rather than beating myself up, and I was fresh enough to start over the next morning after some chat time!

I have asked my folks for help, a few times since Matthew came home and each time asking gets easier- I don't ever want to be dependent on anyone else, but I feel my family coming together better than we have since October. The boys are more comfortable and Matthew is getting a chance to be home. That said, I know that reality of life with Matthew is ups and downs. I am excited that we have a new respite worker who is starting next week who will be with us 2 days per week in the evenings through bedtime. I am continuing to hire sitters when the respite worker is not here so that we can build on success.

My theory is we can build upon our success, or we could continue down the path we were on. Everyday of success is a step in the right direction! I know that parenting these 3 boys at times means we need more help than other parents need, but I am feeling better about my parenting abilities than I had been in a while, and I feel like I can stop treading water and maybe, just maybe enjoy life in in the lifejacket!

the balancing act

Today we had a visit planned with Matthew and the plan was to pick him up at 12:30 and bring him home for a while. His respite worker was going to meet us at the house, and I was happy to know that should there be a problem, we would have an extra pair of hands.

The little boys and I started off the morning wonderfully- we lazied around the house, cuddled on the couch, the boys played a little, and then I gave them lunch before we headed off to get Matthew. Needless to say,the mood for the little boys and I was upbeat. So as we left the house, I was even more comfortable with the fact that we were going to get matthew.

As we pulled up to Healy House, I could see Matthew bouncing around in the window and I got a pit in my stomach- he seemed to be really bonkers which did not bode well for a calm visit. I was met at the door by Tim, the head of healy house, who told me that Matthew had been having a rough morning. He was edgy, getting in everyone's space, and not respecting the adults. After talking more with Tim, I told Matthew that I expected better from him and that he would not be able to stay with us for the full 4 hours, since he had not had behavior that earned him a long pass, and that instead he would come home, go for a hike and then return to Healy House earlier than I had planned. Matthew was upset by this, but accepted it and understood that it was a consequence for his behavior.

Once we left Healy House, Jacob's entire mood changed. Even just as Matthew got in the car, Jacob became whiney, and whimpered. Matthew was too close to him, he touched him climbing into the car. Vague concerns, but it was the look on Jacob's face and his tone that had me worried. As we were driving, Jacob was complaining a lot- Matthew asked for his ball back, and Jacob refused to give it to him. Jacob wanted to see something and Matthew complained Jacob was looking at him. It had only been 3 minutes, we were hardly out of the parking lot for Healy House, and I knew I had to do something.

Jacob and Matthew had always been good brothers. Even as Matthew struggled and Jacob would be scared, the next day Jacob was always willing to give Matthew another chance. But here I could tell that Jacob was legitimately afraid. He was afraid that Matthew would get angry, and when Matthew gets angry, life for Jacob is too unpredictable and Jacob can't cope. Rather than living in the moment and enjoying the good times with Matthew, which as an adult I was able to do, Jacob was petrified from the first moment Matthew got in the car, and it was likely that Matthew would feed off of this negative energy and the day would end in an explosion.

When we got home I decided we would do a family project to build unity and ensure some family time, so we built a house out of lincoln logs. This lasted a little while, and then Jacob and Matthew each got involved in their own activities while David built the log cabin of the century. After more play time at home, we enjoyed a hike at 5 Rivers together and then it was time for Matthew to go back to Healy House. From the moment we got back in the car, I could sense that things were going downhill. Jacob kept talking about the fact that we were going to a friend's house for dinner, which only served to upset matthew, and Matthew was muttering that he hated healy House and that he was coming home in 9 days.

As we got out of the car to walk inside, Matthew was coming very, very slowly which meant that we were bound to have a hard time. When things are going to be ok, Matthew runs into Healy house and tells the staff about our visit. When he will not go inside easily, I know we are heading for a tantrum.

I agreed to go to Matthew's room with him to try to make separating from us easier. He struggled. I agreed to one more hug, one more kiss, he struggled. I agreed to call him later. He tantrummed. Finally I asked another staff member to take Jacob and David so that I could talk to matthew without them watching his tantrum. Unfortunately, no matter what I said or how I offered to touch base with matthew later, he could not be calmed down, and finally I just left as he screamed for me.

As I walked outside to meet Jacob and David, Jacob just looked at me with his eyes, and said, "see I knew he would get mad again", and walked towards the car. I don't know how to build a relationship between the boys, make sure everyone feels safe, and meet each of their needs all at the same time. I think it is truly an impossibility. Even when I planned and had another adult with us, it wasn't enough. Sure, I didnt have the extra pair of hands the entire visit, and yes, that would have helped. However, in 9 days matthew is coming home and there won't be an extra adult here all the time.

I am reading a book about teaching an Oppositional Child, and I am working hard to implement the ideas presented into my parenting. I am doing some extra hugging and snuggling with David and Jacob to ensure that they feel loved and safe as much as possible, and again I am "filling the boys buckets" with positive messages and love that will hopefully carry them through the challenging times.

For now, I have found that when we visit Matthew at Healy House he seems to do better, than when he comes home or out with us in the community, so between now and next Tuesday, that is what I will do with him.