Sunday, November 6, 2011

Stepping out of the Land of Autism

Learning to live with autism was a crash course. We found therapists and specialists. Acquired OT equipment. Did research, took training, learned acronyms from ABA and DRI to RDI and SLP. I can tell you about apraxia, echolalia, sensory processing disorder, weighted vests, vestibular and perioproceotive input and much more. I made new friends, frenemies, and heroes. Temple, Greenspan, Wakefield, McCarthy, Baron-Cohen (not that one, his cousin), I have something to say about them all.

Even looking back, I know it was completely overwhelming and terrifying. I put off things that felt as pressing and urgent as breathing because I quickly learned that it was the only way to avoid drowning. I couldn't tackle diet before I got him into a good school program. How could I think about school before I could sleep knowing he was safe in our home? And trying throughout it all—failing more often than not—to reassure my other boys and meet their needs. Of course their needs grew just as I had less fuel to address them. Learning that their brother had a life-long developmental disability/ difference is not something that a 6 or 9 year old can quickly process and accept. They struggled (and struggle today) to know what it meant for our family. Knowing that when my oldest son imagines his future, his baby brother's care is always part of the picture fills me simultaneously with unimaginable pride and unyielding guilt. This is one of the many dichotomies that now seem to define life in our family.

My son is very, very smart, and autistic.  We need support, but can offer less to our communities than we would like.  We struggle financially, but if I got a full time job and paid someone qualified to watch J and take him to all his appointments, I'd net less than I make part-time. Our boys love each other fiercely even as their respective needs are frequently in conflict. Our various communities tell us that they value our family, however we haven't managed to find a way to participate fully. We feel socially isolated even while we are overwhelmed by the opportunities we have for “getting out”.

This is the struggle that engages us most now.  Now that J is in a great school, has wonderful therapists, is finally feeling good and sleeping well on a special diet and supplements, we have come out of the dark to see that we are a family apart.  All the fun family activities feel like more trouble than they are worth.

Our boy requires a huge amount of supervision and every kind of environment presents some challenges. How can we expect our host or event organizer to prepare for or accommodate a five-year-old explorer with an extremely limited diet reciting a Sponge Bob episode at top volume? Sometimes we hire a sitter, which is a good some-times answer. But between the "special" expense and the guilt of denying J an opportunity to interact (he's the one with the diagnosed need for society, after all), sitters can't fill the gap.

While J needs less supervision in our home, it's a monumental task for any busy family to have guests. As much as we would like to reciprocate the kind offers we receive, we rarely have the energy needed to plan, clean and host. We still crave time with friends but we have simply lost most of our social motivation.

So while we've matriculated from the crash-course that followed diagnosis, and graduated from crisis mode (more or less), there are real, long-term adaptations to make. We are still feeling our way, there's no Thriving in a Special Needs Family for Dummies. How much we need from friends, family, and our various communities is, we've learned, more than we can reasonably ask. Finally, we can now perceive our limits before we smack noisily into them (usually). We back off, tuck in, sometimes even hide out. All the while feeling left out, un-tethered. Our mission now, it seems, is to find out whether we are living in a real-life Catch-22, or whether me might finesse a balance on this rickety bridge between the world and our life in the land of autism.


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  2. My kids are both diagnosed on the autism spectrum but totally different in their needs and abilities. We too could benefit from me working full time, but after care programs cant "handle" our situation or you pay out the ass for someone who can. I hate it, it's so hard

  3. LLA_Princess - right? Then you have kids walking away from school programs and the schools facing no consequences and parents going to jail or loosing their kids over less. Stuck.