My heart is breaking. Again. We are having a really tough school year. Something BIG has been happening with B. I don't recognize the version of him that school is seeing. My sweet, infectiously happy lovable little boy spends at least half (from what I can gather) of his time either crying, yelling or freaking out in ways I had never seen until this year. I have been called 6 times in 13 weeks because his behaviors led them to believe he was sick. And he wasn't sick. Just sick of school.
It's so tough to be on the sidelines. I am not there to see what's happening. I can't jump in and clarify or make suggestions like I did with home therapy. With a kid who can't tell me anything about his day, this is tough. Anyone who knows me knows that I'm not sitting back silently. I call meeting after meeting, ask question after question, escalate, complain, likely drive everyone there crazy. And it's not enough. It's not getting better. I don't know what's going on but my suspicion has been that the people working with him just simply do not get him. They don't know what he's capable of and don't know how to motivate him or how to teach him. He's frustrated and he's acting out.
The amount of communication I get from the school is actually pretty good - much more than I got at his first school. I see pictures almost daily and I get a written synopsis. The synopsis is rarely positive but he looks like he's having fun in pictures. I'm trying to let go a little.
Once in a while, I get videos. This is as close as it gets to actually seeing what's going on. There was one a few weeks back where some huge mistakes were being made. Innocent, well-intentioned but just wrong.
Then there was today. I watched a video of him practicing site words and he was clearly saying "I want bus." Not just once. Over and over. "Bus. I want bus." Then, when that didn't work he switched to "me sick. I want bus." He was completely ignored and the professional continued to repeat the site word as if he was just saying the word wrong. Here's a kid who can barely talk and struggles with meaningful communication in the most severe way you can imagine. And he was trying with words to let them know what he wanted. And it got him nowhere.
He IS sick. He has a cold. I wouldn't have wanted them to send him home. I just wish they would have acknowledged that he was communicating and advocating for his needs. This is HUGE. Stop. Take a break. Let him know that you heard him and understood what he was saying. We have spent YEARS trying to get him to say more than 1 word to request something. And it really wouldn't take much to teach him that talking isn't worthwhile. It already is his very last resort no matter how much he wants something. Imagine how that must feel. I know how hard that was for him to come up with words to say and they fell on deaf ears.
I've called the principal and the teacher, the teacher's supervisor and the supervisor's supervisor. But I can't take it back. I'm not sure I can even make them understand why this is such a big deal. What's worse is that I can't talk to B and explain it away or make it better like I would with my other son. I can't fix it. I can't take away his constant struggles. I can't tell him it's going to be okay. I can't make the Autism go away. Believe me, I would if I could.
xmas 2013
Thursday, December 17, 2015
Tuesday, October 6, 2015
Welcome to Holland
Welcome to Holland. Er, I mean Iceland. Wait - did I say Iceland? No, we are actually headed to Hong Kong. You thought we were in Hong Kong? Sorry - this is Germany. And so on and so forth. You get the point. If you've never read it, there is a beautiful piece about having a special needs child called Welcome to Holland. You can check it out here: http://www.our-kids.org/archives/Holland.html
I think it is controversial in some crowds (what isn't?) but it resonates with me. Except that as time goes on, I feel like we are traveling to new, completely foreign places more and more often - sometimes multiple times in one day. Just when I think I've sort of got something figured out or at least have a handle on it, B totally changes it up. Right now, this is the most difficult part of parenting our not-so-little dude. I am a type A planner by nature and the unpredictability just absolutely kills me. For example, sometimes a trip to Target is fun and B. happily strolls about like his good natured self. So I gain confidence and set out to repeat our fun excursion. And the next time, it may start out exactly the same but then all of a sudden, out of nowhere he has a nuclear meltdown. Now those of you with toddlers are probably shaking your heads because this is exactly the way they behave all the time. However, there are a few key advantages we no longer have:
1) A large majority of people can relate and empathize with the craziness of toddler behavior
2) You are much bigger than said toddler and can pick him or her up and remove them from the situation and
3) The toddler will grow out of this behavior. As sucky as it may be, you know that this too shall pass.
That third one is a doozy. It seems that our issues will not pass - they just morph into new, more difficult issues. The older he gets, the harder it is. I have always been a bit hesitant to reach out to support groups and families with kids on the spectrum. Each kid is so different and I honestly didn't really want to know what might lie ahead. I think this has actually been a really good decision. Ignorance can be bliss and there's nothing we could have done to prepare for it or change it in any way. I'm glad I didn't know where we were headed. Because let me tell you, it is getting SO.MUCH.HARDER. I actually miss the younger days. Even with all the therapy and chaos and zero time to myself, it was easier in a lot of ways. I felt more of a connection to B. and I felt like I knew how to parent him (for the most part). I used to always say that despite his diagnosis and challenges, "at least he's happy". And that kid is still with us - the one whose smile and laugh lights up a room... the happiest kid in the entire place. But there's this other side now that is explosive and angry and miserable in his own skin. When he is that kid, I don't know how to relate to him. I don't know how to help him. I can feel the stares and the judgment when we're in public and I can't do anything about it. I can't even describe how difficult it is to see him like that and to be completely helpless to make it any better. So I take a deep breath and wait for it to pass - wait to arrive in the next destination. And hope against hope that it's a place where he's happy and okay and that he knows on some level that I would do absolutely anything to fix whatever it is that is making him feel this way.
I think it is controversial in some crowds (what isn't?) but it resonates with me. Except that as time goes on, I feel like we are traveling to new, completely foreign places more and more often - sometimes multiple times in one day. Just when I think I've sort of got something figured out or at least have a handle on it, B totally changes it up. Right now, this is the most difficult part of parenting our not-so-little dude. I am a type A planner by nature and the unpredictability just absolutely kills me. For example, sometimes a trip to Target is fun and B. happily strolls about like his good natured self. So I gain confidence and set out to repeat our fun excursion. And the next time, it may start out exactly the same but then all of a sudden, out of nowhere he has a nuclear meltdown. Now those of you with toddlers are probably shaking your heads because this is exactly the way they behave all the time. However, there are a few key advantages we no longer have:
1) A large majority of people can relate and empathize with the craziness of toddler behavior
2) You are much bigger than said toddler and can pick him or her up and remove them from the situation and
3) The toddler will grow out of this behavior. As sucky as it may be, you know that this too shall pass.
That third one is a doozy. It seems that our issues will not pass - they just morph into new, more difficult issues. The older he gets, the harder it is. I have always been a bit hesitant to reach out to support groups and families with kids on the spectrum. Each kid is so different and I honestly didn't really want to know what might lie ahead. I think this has actually been a really good decision. Ignorance can be bliss and there's nothing we could have done to prepare for it or change it in any way. I'm glad I didn't know where we were headed. Because let me tell you, it is getting SO.MUCH.HARDER. I actually miss the younger days. Even with all the therapy and chaos and zero time to myself, it was easier in a lot of ways. I felt more of a connection to B. and I felt like I knew how to parent him (for the most part). I used to always say that despite his diagnosis and challenges, "at least he's happy". And that kid is still with us - the one whose smile and laugh lights up a room... the happiest kid in the entire place. But there's this other side now that is explosive and angry and miserable in his own skin. When he is that kid, I don't know how to relate to him. I don't know how to help him. I can feel the stares and the judgment when we're in public and I can't do anything about it. I can't even describe how difficult it is to see him like that and to be completely helpless to make it any better. So I take a deep breath and wait for it to pass - wait to arrive in the next destination. And hope against hope that it's a place where he's happy and okay and that he knows on some level that I would do absolutely anything to fix whatever it is that is making him feel this way.
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