The days are long but the years are short.

My brain is filled with all types of blog posts. This year has been filled with many challenges for us, almost none of them having to do with Bryan and autism. However, even though I say this, and Bryan is terrific, the challenge of autism is alive and well. The great thing about human nature is that you always want to focus on what is good and not what is bad. Also, no one really wants to hear how you are doing. No one really cares or gets your day-to-day woes, they want to hear the good, so you put it out there. However, the tough parts always exist, and mostly you just need to focus on your perspective. We try very hard to always focus on the good with Bryan. If you read my blog, you know how I feel about him making progress, and how just the sheer fact that he is making progress, well that propels us along. Let me be clear about this, to me, progress is maturity and independence. Progress does not equal neurotypical in any way to me. Some of Bryan’s behaviors, his autism, as I say, is charming, refreshing, engaging and exhilarating. Bryan tells me he loves me about 100x a day, and although it is often at the top of his lungs and because he knows I may be upset with him, it’s still a great thing to yell if you’re going to yell. But, I don’t want to fool anyone into thinking this is some sort of special needs fairy tale, because it isn’t. If you are looking for that, look away, it doesn’t really exist. So while overall we are seeing great progress, the days are very tough. The problem is that Bryan is unable to chill out. As he says “I need to take a chill pill” but he has no idea what that means, he hears Jason say that or he says “I can be quiet” but isn’t. He is up some days before 5 and is eating nonstop. If we did not put some controls on him, he would eat all day and night. He also began pinching again. He tries to stop himself but if you tell him something he does not want to hear, he often pinches. So receiving a pinch from an 8 year old Bryan was not fun, but 13 year old Bryan who has about 50 lbs on me and is about 5 inches taller than me, is painful. ouch!! What is crazy about Bryan’s autism is the bizarro world in which we live. What is easy is hard and what is hard is easy. If you know me personally, you know I say this all of the time. You can take Bryan to do something he really wants to do, like go to the beach or to a restaurant, and he can be so challenging. It can be a complete nightmare. He may scream, pinch, tell you he “cut the cheese” and manage to stink up a car or restaurant and get you to the point of complete nuttiness. Then you can take him to do something like blood work, or today when Earl took him to get braces put on, and he is a champ, a model citizen. He and I were in a car accident on Saturday. He has a lot of anxiety but not phobias. He was concerned about me and I was concerned about him. His form of anxiety is almost humorous. “I am anxious about dessert”, which is Bryan speak for I want dessert and you better give it to me but I know I have not been behaving well so it’s at risk. I am not sure how to explain these things. Part of it is, at least by my thought process, is that he has an extremely high tolerance for physical pain, so some of the things he does well at are because he is not hurting that much and so he can hack it. Just a theory, but I’m the mommy so I think it’s a fairly reliable hypothesis.
We try to spend our long days reminding ourselves of the greatness of the years; the progress and the maturity. And like all autism stories, anecdotes, blog post, none would be complete without acknowledging how a small moment in a typical family is a HUGE moment for us. Both boys are big enough to sit up front with me now. Jason used to push Bryan out of the way to sit up front. So I told Jason, if you want to sit up front, you need to call “shotgun.” So he has been doing this. Yes, I teach my boys the most important lessons! Bryan is very compliant and goes to the back seat. Last week the 3 of us were leaving soccer. As we approached my car, Bryan said “Jason I am calling shotgun”. Jason said “hey mommy, did you hear Bryan called shotgun?”. We were laughing and high-fiving and it was a glorious moment. Jason gets it and we smiled and joked the whole way home. Jason took his place in the back and we literally ran into the house to tell Earl and we all celebrated! Each time they do it now, rather than being irritated by this juvenile game, I love it. They are siblings doing what siblings do and it rocks. The thing about Bryan’s autism is that he can wear you down, he can exhaust you to the point of delirium and then in one second, with one warm sweet hug or kiss or clever comment, you can be brought back to the reality of the love you have for him and how hard he works each day.

Ogres are like onions

shrekIf you have seen Shrek, you know what I’m talking about. Ogres have layers. Onions have layers. Time to peel back and examine my thoughts over the last week. I almost titled this blog Working the Fan Club, Part Deux, but just couldn’t do it. Bryan had a really great Thanksgiving, that is autism parent speak for we had a really great Thanksgiving. Sometimes we just don’t know how much progress Bryan is making until you see it on other people’s faces or in their comments. We went to my cousin’s house for Thanksgiving. We had gone there two years ago too. To us, Bryan is always making progress, but to qualify or quantify it is difficult for us. It’s like you know your kids are growing but until you see the high-water pants, you really can’t see the changes or at least they’re not obvious. The thing is there are layers to autism and I think about where Bryan is all of the time. The hard part is that it’s all relative, and sometimes you need someone to remind you that your or I should say Bryan’s relative place is pretty damn good. On Thanksgiving, at my cousin’s house, I barely heard Bryan. He was there, of course, and ate, of course, turkey and soda, as promised, but he wasn’t extraordinary. In fact, his behavior was quite ordinary. He played upstairs with the other kids, he rough housed with the other boys, his teenage cousins, and played video games.  A few of my cousins, unprompted by me (which of course is the best part) made a point of letting me know how well they thought he was doing. They reminded me of how tough it was for him to be patient, be quiet, enjoy his day just two years ago. Two years ago he was so anxious about going home, eating, dessert, etc. This year, he was there, but he had matured. It is not possible for me to even attempt to describe the emotions associated with these comments. Everyone loves to hear that their kid is doing well or behaved nicely. When someone acknowledges that your special needs kid behaved like a typical kid, well you feel great, but you also feel guilty. Somehow I can be incredibly happy at the same time feel ashamed. Is the goal to be typical? No it isn’t, but to have a fun, unremarkable Thanksgiving from the autism perspective, I’ll say it’s a triumph.

The other night I was up in Bryan’s room with him at bedtime. We have our little private things we say. We do movie lines together from Shrek and the Incredibles. I know you are not supposed to encourage the kids with autism to use “scripted” language. However, these are our private jokes, our goofy moments when we are mother and son just sharing a cuddle and a smile. The thing about parenting a kid with autism is that you are truly always guilty. Shouldn’t you be working on language and reading comp all day ever day? Shouldn’t you force him to answer questions in complete sentences every time? Well I say no. I am allowed to just be his mom. I am allowed to just love him as he is and not have to work on him all of the time. I read somewhere that it’s a good sign of trust if you and your child have some sort of private jokes or signals. I have this with Jason and it’s very natural. I realize that my little movie line sessions with Bryan are the same. To lie in bed with a giggling Bryan is a great joy.

Recently there has been debate about Autism Speaks. Apparently one of their founders made some comments in an editorial about how autism is an epidemic or at least it should be treated that way. One of the board members of Autism Speaks quit, basically stating that Autism Speaks quest for a cure negates the value of people with autism as they are. This is my interpretation of what happened, not literal at all. On the listserv I participate in there has been great debate about the different perspectives on this and Autism Speaks. Are we saying we want a cure equals we don’t think our kids have value as they are? Is there really an epidemic here or are we all just not “accepting” people with disabilities or people that are different? I don’t think these concepts are mutually exclusive. Working toward a cure may be a bad way to look at it, but looking for medical assistance to make someone’s  life easier is certainly important. Equally important is to accept people with autism the way they are. It’s just not black and white and what really bugs me is that people with autism and people who support autism are at odds with each other about the proper approach. We need research, we need treatments, we need community support, we need it all. We need to embrace all of the things that are possible medically, emotionally, etc. We need to support each other and not judge each other’s support for various treatments, methods, etc. So when you peel back the layers aren’t we all the same in the middle?