Delusions of grandeur and paved roads

When Jaden was discharged from all of his therapies a few months ago, I had some delusions. I have to face it now. There is probably in every mother of a child with Autism a buried fantasy of *when it all goes away* - the war we fight for our children's future - the point when we can breathe a sigh of relief that he/she can talk/walk/read/write/take care of their own needs/has stopped violently raging and won't end up in jail/fill in the many blanks here, and we can skip through life blissfully like, well like a typical family. Where the mountains end and there is a road under our feet. Paved at that. 

OK. For a second I thought I was there. On that road. Before that moment I wasn't even aware that this is what I've been waiting, or at least hoping for. Like I said, buried. Under all that day to day junk that blocks our visions of tomorrow. 

When we learned that Jaden had special needs I threw myself into a year and a half of research that would rival a PHD hopeful. 10-12 hour days were not uncommon. The day I realized my son has Autism I stopped sleeping, almost completely. When my research led to a well-formulated plan, and when I was able to let the experts at The Brown Center take over the heavy work, I had reached critical burnout. The research efforts dwindled to a trickle. I knew what I needed to know. Not everything, but what I needed for Jaden. I still observed their every move through the monitors and participated in the classroom occasionally, and went to their parent training. I did the stuff at home that I needed to. My goals were immediate; Learn to talk, learn to understand speech. Hold a pencil and learn to draw and write. Hold a utensil and self-feed. EAT. Walk without falling over his feet (ok this is still an issue.) Self-care age appropriately. In other words, get him to the level of his typical peers developmentally. 

It was like I was trudging along the line of our goals with my head down until suddenly I was told I'd arrived. What? Arrived where? "Jaden tested in the 'normal' range for everything." He's done. Hallelujah! 

That's when I became delusional. I was looking at "developmentally appropriate" and thinking hell, we're on that paved road now. 

     underwater photography

I'm going to make a confession. I was wanting to leave the "A" word behind. I didn't want to think about it anymore. Being forced into this world was like learning to drown. Eventually I had forgotten all about that "other world" I used to live in before I was forced kicking and screaming to this realm. But now - now I can leave, right? We can go home and pretend the last few years never happened. Oh yeah, I wanted that. To all my fellow Autism parents; I wanted to leave you. 

My delusion was short-lived. Oh I knew he still "had Autism." (Not to get into the great debate, but) I don't really think Autism is something you can, or maybe even should, cure. The brain can be trained to learn new ways to cope with life, but it will never be the same as being born typical. It's just different. Even then, I entertained the notion that I could be wrong. "He's doing so well, isn't he?" 

My dear self: developmentally appropriate does not mean not Autistic. 

We have a lot of recovery. We still have Autism. It insisted on being near his classmates in camp then kept him isolated from connecting with them. It tried to escape the house several times, climbing on chairs and studying the extra door locks in an attempt to circumvent them. It melted down at the mention of door alarms (because that's now next.) It screamed at me, hit me, and bit and tore at my clothes with it's teeth in the convenience store. It raged at me for days on and off between sweet and loving. It wrapped it's arms around my neck then shoved it's thumb into my windpipe in anger. I looked at him and said "I don't get it. You're SO SMART. Why can't you understand how inappropriate this is? Why can't you see that it will get you the opposite of what you're screaming for?" Why doesn't he understand why he can't wander off through the neighborhood or anywhere he wants to by himself? Why can't he remember to use his words? Why isn't he trying to negotiate with me, like my little sister used to with my dad? Why can't he see that I'm a sucker for him and know if he played his very good cards right his life would be - easy? 

Because he has Autism. It's not over, it's just different. I prepared, I worked, and now we've gone on to phase two. I was told that we would go on to meet new challenges but I didn't hear it. He can use a pencil and have a conversation with me now, damn it. So we have the older, brilliant Autistic child who has been rediagnosed with Aspergers, and I haven't even really researched this part yet.   

Paved roads are overrated anyway, right?

I can’t look…

I don’t mind questions about Jaden and Autism; in fact I welcome them. It doesn’t matter if the questions come from the utmost ignorance, as long as the asker’s heart is sincere in wanting to know the answers. It means they care, it means they want to learn.

I also started from the utmost ignorance; television dramas and stereotypes my only education that made me miss what should have been obvious.

One inevitable question, usually asked in halting, apologetic words, is “What about the future?”

This is the question that silences me.

That word has changed for me. Once upon a time to me “the future” invoked a picture of a road stretching out long before us with colorful shadows of might be and possibilities marking milestones.

Now the future is this week. I know what we’re doing this week. We’re going to school four days of the week and going to other therapies on two days. I have waffles and vegetarian chicken nuggets in the freezer, Dominos on speed dial, Lays chips and Chips Ahoy cookies for snack time, because that’s all Jaden will eat. The laundry is done. I’m ready for the future.

But I know that this isn’t what they’re asking. And I can’t say. I can’t even look.

Sometimes I glimpse up, usually unintentionally, and the shadows of “might be” have changed. Hopeful colorful ones are still there but they’re now joined and mixed with scary dark ones. Every time Jaden hits me when he’s mad, the dark ones loom in front of me. Every time he gets distressed and just can’t understand what I’m saying to him, or when I see his neuro-typical peers shun him and break his heart because he doesn’t understand. Or when he gets stressed and loses his words, or starts screaming at strangers to shut up.

I glimpse ugly futures every time I read a story about police mishandling or abusing a person with Autism, because they didn’t understand. Or when I hear about people forced into institutions, or becoming homeless on the streets, or victims of hate crimes, or perpetrators of crimes.

It makes my heart literally hurt, it makes my chest tight, and I look down. I keep my eyes to the ground at my feet.

I can’t look.

It’s not as if I’m ignoring the future. Almost all of my time, energy and money is going towards it. Diligence relaxed would ensure that the colorful shadows die. I’ve found that walking the road seems more like climbing cliffs. I heed the well-worn advice to not look up - or is it don’t look down? Just don’t look. But I’m climbing.

  

I’m reminded often of the scripture “Where there is no vision the people perish.” It is a bit like that. Hope for the future is an essential part of life, even if things don’t turn out as you envisioned them. And I do have a few hopes for myself. I know it’s necessary to be able to keep going. But like every good mother my future is wrapped up in my child’s, and I can't see it.