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.

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One thought on “The days are long but the years are short.

  1. Every blog you create serves to remind me what an extraordinary family you have. Nothing but pure love. oxoxox

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