This past week, the school staff and new case manager asked me, “Do you see your [15-year old] son living with you indefinitely or do you see him moving out on his own?”
My answer: “Out, definitely.” (Are you kidding?)
Here’s a quick background: Currently we are working on the high schooler’s IEP. We have also increased his intervention with our local case management unit. He’s on his way to adulthood, and we are preparing.
Fun times.
I love my boys, but I have got to have a breather. At the same time, I wonder if I’ll ever truly get one. I wonder if they will be employed and have jobs that they like. (Read more here.) I wonder if they will support themselves someday, be able to live on their own, with roommates… or, dare I say, spouses.
It just so happened that as we’ve been grappling with these questions, I’ve also been reading a book called Thicker Than Water: Essays by Adult Siblings of People with Disabilities. This book is joyfully, and, at times painfully, honest about the adult sibling’s role in care and advocacy.
Like many parents, I am concerned about the possibility of my neuro-typical daughter being the boys’ main caregiver after my husband and I are gone. There’s one of her, and two of them. This book inspired me and my husband to seriously start the process of getting a special needs trust going and explore future living arrangements for our sons. We want to provide for our sons and protect our daughter from future frustration and turmoil.
There must be some divine intervention going on right now in this Givler family household.
All of these questions at once about independent living + reading about care after the parents are gone and sibs are legal guardians+ realizing that my trusty ink pen is from our local Special Needs Planning= God is letting me know it’s time to prepare.
It’s daunting. It’s scary. It kept me up a couple of nights.
So today, I happen to receive a link in my email entitled, “They’re assets at work– and they’re autistic.” Upon reading the article, I realized it was Temple Grandin’s presentation that I was privileged to attend last May. This time, however, she was joined by corporate managers who hire people with autism.
Here’s an excerpt of the article:
Workers on the autism spectrum don’t always fit in at first, but with training and a little extra consideration, they can be among the most innovative and detail-oriented employees.
That was the message Thursday from 3M, Cargill and Best Buy managers who took the stage at 3M’s “Autism and Employment” forum, which was organized by the St. Paul-based Autism Society of Minnesota.
I am very hopeful about my sons’ futures. My sons do and will have a chance to live to their full potential, whatever that may be. Maybe they will indeed be with us “forever”, but maybe they will be independent. Whatever the case, I will advocate for them and cheer them on. I will, as Grandin said in the article, “loosen the reins a little bit.” My boys will flourish. (And perhaps my husband and I will finally take that honeymoon.)
Autism From the Lighter Side 
Posted by Sandra on February 18, 2011 at 6:11 pm
My husband and I have found ourselves thinking about those very same things even though our boy is only in single digits. We know eventually he will become an adult. We know most likely our two other children will be his primary care givers. We know it is asking alot of them.
Posted by ehgivler on February 19, 2011 at 9:44 am
Sandra, I highly recommend reading that book when you are ready (Thicker than Water). I got it out of the library and now I’m going to buy it as it is a great resource for sibling issues. The good thing is that I discovered that we’re already doing a lot of things “right”! 🙂 There are things that we need to have in place, however.
Posted by bbsmum on February 19, 2011 at 4:05 am
I keep getting asked that question. I reply “Where else would he go?” That tends to be met with stony silence, which I suppose provides the answer to the original question. Well done for creating choices.