Autism-There is beauty in the Struggle

Tonight as I stripped the urine soaked pants off my ten year old boy, bathed him as he sat crouched in the shower as it hit his back, dried him and placed a clean pull up on him i couldnt help but think about how beautiful he is. It’s amazing how sometimes in the depths of the struggle when it seems that all is lost my heart swells with pride and thankfulness that he is in my mine.

Its hard to describe really the beauty that I get to experience everyday. The innocence in his mischevious behaviors. Like how he cuddles up with the women at the park, makes friends with them then steals their phone. Or how when you think there is no one in that quiet shell he does something that blows you away like brushing away a tear when I cry.

Yesterday, as I sat in the chair watching him work in speech therapy after a morning of ABA and more ABA to come in the afternoon I couldn’t help but marvel at the boy he has become. I can’t even begin to imagine what it’s like to be in his head. With people constantly redirecting, judging, shaping and wanting him to do things he does not want to do one would think he would become angry, cold, distant but not this boy. This boy cuddles, plays and is so funny. He is the hardest worker that I know.  He amazes me more everyday and I pray that one day I can be half the person he is.

I think the hardest part of all the therapies is that sometimes I get jealous. I get Jealous that the therapists seem to see him more than I do. Sometimes it feels like I am just the taxi cab and the nanny that keeps things going and they are the ones that are putting in the “real” work and getting the hugs. But then, just when it all seems as if the emotions are going to come crashing in he says something that they cant understand but I can and for just a moment I feel like I have him to myself once again if even just for a moment.

Tonight before his shower Aiden took my hand and placed it in his mouth to show me had a loose tooth. “oh, Aiden is that bothering you?” “WES” he said as he shook his head up and down (a skill that took him three weeks to learn). “Honey, that will come out on its own in a few days is that okay?” “no” he said as he pushed my hand out of his mouth and yelled jumping up and down in delight obviously having moved onto another thought without finishing our conversation. I just stood there smiling because he “told” me that his tooth was bothering him. I knew, no words required.

The fact that he is in pull ups at ten doesn’t bother me. The urine soaked clothes don’t much bother me anymore. Maybe it has become normal. Maybe I have just accepted the reality for what it is. Only time well tell and I’m sure I will have my wavering moments again but this isn’t one of them. Right now I just stand in awe, silenced by this thing they call autism. I love these nights of no therapy because I can let him just roam. I get to watch him choose what HE wants to do and those are the moments that I love to just stand back and watch him. I try to see what he sees. I look at the DVD cases with him and try to figure out the method to his DVD choices (I still have no clue). I love to watch him navigate technology and type difficult words without any spelling errors. It gives me that moment of pride in knowing he is far beyond his peers in this one area.

I no longer look at and study his evaluations denoting his deficits or his idiosyncratic behaviors. I look at him and where his strengths lie. As those evaluations sit in laminated pages in a 2 inch binder on my bookshelf collecting dust my amazement of him is refined everyday that his feet hit the floor knowing that a long day of therapy and uncertainty await him.

As the therapist pulls out another puzzle, knowing he is going to scream and bite his hand in opposition, I sit there staring at the wall knowing that I can’t inverveine. There is a level of restraint that parents of special needs children need to practice. We cant act on our natural impulses that come naturally  and there have been days that I have stood outside with my hands over my ears crying repeating to myself through the tears, “through the tears and the tantrum there’s progress….. through the tears and the tantrum there’s progress” until I believe it (at least somewhat) and collect myself before rejoining the therapy once again. I have learned it’s sometimes best to walk away (when you trust the therapist has his best interest in mind and is not being abusive of course) when it becomes too much because children with autism pick up on your weaknesses and it just adds to the heightened stress.

That’s what amazes me. There are times it feels as if he is just a silent tenant in our house that kind of just co-habitate but when it comes down to it and someone is sad, or someone is sick he always seems to show up. I don’t know how he does it. The idea that children with autism don’t have empathy is hogwash. I think they have it more than most people they just don’t always expresses it in the ways we have been conditioned to receive it and sometimes I think that its that we just move way too fast and forget to look at the love in the details. We see the big picture but the truth is in the details.

I have come to accept that despite all the prayers I have prayed autism will always be a part of our lives. I have come to revel in the idiosyncratic lifestyle that we will always lead. I have come to be thankful that in the struggle I have come to peace with it. Not to say I won’t stop trying to get him to be the best he can be but because of this acceptance the desperation is gone. The anxiety is gone. Come what may, I am thankful. Thankful because I get to take this journey. A journey of roads with uncertain destinations. A road that shifts west when you planned to travel north but the scenery can’t be beat. It cant be described by pictures or words. Its something only we get to truly experience and for that I am thankful. Though its scary sometimes and people can be hurtful in their lack of understanding there are those moments that bring me back and those people that restore my hope in the world. So today I am thankful for the pull up changes and his idiosyncratic ways because I get to close my eyes at night knowing we both did our best and we did it in love.

 

One thought on “Autism-There is beauty in the Struggle

  1. So beautifully put. Too often the reports highlight the weaknesses, the problems, the perceived limitations. You hear people frequently talk about you must be desperate for a cure. Soneone way more special than myself told me “Why do the keep talking about cures and changing me, this is who I am”. It’s an honour that we are given glimpses into their worlds. It is us who should change. Different realities exist, ours is out of sync with the special realities. Instead of fighting that reality we should we working together to try and build better bridges.

    Like

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