Fight for the Best, Plan for the Worst

Posted by on Apr 12, 2012 in Featured | 0 comments

Fight for the Best, Plan for the Worst

The way everyone spoke back then, I thought “age three” was a magic cure-all age for children with autism, and no doubt, it would be for my son. The zero-to-three kids receive urgent resources in many states, including mine. We had a case manager who acted as our advisor* for services, therapies and everything in between. Despite my initial refusal to ever put my son in daycare, he would go to daycare for peer interaction. He would get OT, Speech Therapy, ABA, and music therapy. No alternative therapy was off the table — you name it, we’d do it. Like many other parents’ children, my son regressed following vaccines (at the time I blamed the needle prick itself for traumatizing him to the point of withdrawal — I actually said the words, “I think he’s mad at us.”) But by that magic age of three, the injury would be reversed…he would be recovered, indistinguishable, fine. Only he wasn’t.

Nine years later, we’re in fight for the best, plan for the worst mode. Parents should die well before their children, right? But in the world of autism, we all beg to live to age 105. In planning for the worst, I’m becoming intimate with the unpleasant details of what the worst really means all while asking the common question among us: What will happen when I’m gone?

On my own family’s level, we’re taking some steps to plan ahead,** but there are more blanks than there are options. Where is he going to live? Where is he going to work? What happens when he has a violent meltdown under the care of someone who doesn’t love him?

At least I know I’m not alone in feeling this way. Are there any moms out there willing to age to 105 with me? You bring the face cream, I’ll bring the wine.

*Have you seen what they’re doing in Australia? The Australian Government committed $220 million through June of this year to a package that includes Autism Advisors (beyond age three!), Funding for Early Intervention services, Playgroups, and a government ASD website. If you live in Australia, let us know if these resources have helped your family. See http://raisingchildren.net.au/children_with_autism/children_with_autism_landing.html

**If you haven’t checked out the current issue of The Autism File, grab one and turn to page 54. In “Planning for the Future,” mom and author Shannon King Nash tackles the topics of financial planning and guardianship with a jargon-buster sidebar you’ll want to permanently pin to the wall. See http://www.autismfile.com/ (you’ll also want to check out Chantal Sicile-Kira’s newest article on transitioning into adulthood, she’s an NAA fave. http://www.psychologytoday.com/blog/the-autism-advocate/201204/autism-and-parenting-preparing-yourself-your-childs-transition-adult)

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