I'm going to get a little deep for a minute here. Jack has been having a rough week and it's really had an effect on me. He'd been making such amazing progress. I'd been able to foster a lot of hope. People constantly told me they'd never have guessed that Jackson had autism because he behaved so well out in public. At home in his comfort zone his behaviors still came out, but they were mild. Things really seemed to be getting better.
Allow me to explain something...when your child is diagnosed with autism, it's not the same as being diagnosed with a disease or illness. There is no cure. It will not go away. Autism is for life. You can use therapy to manage the symptoms and work towards a 'normal' life, but your child will always have autism. So when you hear that word from a doctor's mouth, even if you knew it was coming (as I did)...you have to mourn, in a sense. You have to let go of the hopes and dreams you may have had for your child -- there are just some things a child with autism may not do or may have to do in a different way. It's not a death sentence, and I still have MANY hopes and dreams for Jackson, but I'd be lying if I said I didn't have different ones before he was diagnosed. Now I dream of him potty training. Having a sleepover. Being a part of a team. Having a job. Getting his driver's license. Things I would have just taken for granted without autism -- things I just know will happen for Donovan.
As Jack improved over the last many months, I was able to have some of those dreams again. And then this week, he regressed in many ways and it was like being physically hit. This week he has spent the majority of his time either playing PBSkids games on the computer, sitting next to his service dog Starr, or running aimlessly back and forth, back and forth from patio door to front door...while running he flaps his hands in the characteristic autistic trait, grunts, and quotes directions from his video games: "To choose a color, use the arrow keys and spacebar to select the answer. Oops! Try again! Use the mouse to move right or left." On and on. He has been refusing to acknowledge or engage with family or therapists -- essentially it's just like...he's gone. He's not here right now. I took him to have his pictures taken yesterday with his grandma, and while it appeared that he was behaving well, he wasn't "present". To get him to sit down for a pose, I had to repeat his name 5-6 times, get into his face (he wouldn't make eye contact) and physically stop him from his bouncing (stimming) to get him to even hear me. It was incredibly frustrating, because while he wasn't being naughty and it probably didn't even look like he was acting that 'different' from an outside perspective...I knew that it wasn't 'him'.
I cannot tell you how difficult it is to see your child like that and have no idea how to reach him, to bring him back. I don't know what caused this shift in his behavior. It could be due to my new job. For his whole life, I have always been here. Charlie would come and go on alternating weeks -- and that was hard to get used to for Jack too -- but I was always here. Now for a week at a time, I'm gone from morning till evening. Daddy is there, but I'm sure it's a big change for Jack. So of course a lot of guilt comes with it.
You can never forget that your child has autism. You must ALWAYS be a few hours and steps ahead. You must constantly plan what you are going to do around how your child might react, what schedule or routine it might displace, what therapy you have to be home for, what possible comfort measures you can provide to ease transitions, etc. But I found myself lulled into a sense of "normal" where that was just how things were -- that's how life is lived for us. Suddenly it got a lot more difficult, and I sort of remembered..."Oh yeah, we have autism." It's not just Jack, it's the whole family.
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