You Do What You Have To Do
December 5, 2007 by Kristina Chew, PhD
Filed under Health
Both the state legislatures of Wisconsin and Michigan are seeking to pass bills to provide insurance coverage for autistic children. The Michigan legislation also creates a box on the state’s tax returns that, if checked, will secure funds for autism. One comment by a Michican mother of an autistic child, Mara Husband, particularly struck home with me:
“It’s a constant battle between what’s the right thing for your whole family in the future, you know, do we risk the chance of maybe having to move in with his mom because we lose our house? that’s what we’re facing, so it’s very overwhelming.”
These words went right to me because, in June of 2006, moving in with my in-laws was precisely what we did to provide for Charlie. We had found out that it just so happened that there was (so people in the know said) a very good public school autism program in the town where my in-laws had lived for over thirty years. Charlie at that time was attending a private school that was scheduled to close; previous to that, he had floundered in a public school program to the point that we had to keep him at home for his safety. While New Jersey does have a number of private autism schools that have the kind of educational programs we thought best for Charlie, they seemed only to take young children—–and Charlie, aged 7 going on 8, was “too old.”
(My birthday is next week and, being of course some years older than Charlie, I am far, far “over the hill” by those standards.)
Moving into the lower-level of a split-level after you’ve been a tight little family of three in a house of your own is easy for no one: Our past year was truly “interesting.” Charlie, as I have written, flourished in his new school placement and is now so eager to go to school that he starts talking about it on the weekend. My in-laws both have numerous health problems, some of which have never been addressed and not treated. A full-time live-in nurse had started to live with them shortly before we moved in. The nurses (there were frequent substitutes for the one nurse who was mostly there) were from Africa and suffice it to say that there were too many cultures for one kitchen to handle, or so some thought.
It was quite a full house and there were many times when Charlie’s needs and disability were significantly less than those of his grandparents. With the rotating nurses, different people coming into the house who were strangers to Charlie, different routines, his grandparents’ occasional illnesses, numerous food temptations (my in-laws keep their kitchen stocked with Entenman’s and cartons of ice cream) and much more, Charlie had to be flexible — and Charlie was.
We moved into a place of our own in early September and while Charlie misses the big yard and garage and driveway of his grandparents’ house, he made the adjustment quite quickly. Jim and I have been reflecting on the experience every since: We believe it was the right thing to do, to move in with my in-laws, though it put a tremendous strain on the two of us. Really tremendous. But we would still do it again if we had to, because finding the right school for Charlie has made the difference for his life, and so for ours, for the three of us.
So if I tend to focus mostly on services and schools, on education and on the mundane topic of daycare—-rather than the kind of research that is about (with all due respect for my scientist friends) finding genes or something new about mirror neurons or on research to prevent autism—it’s because what’s most on my mind are things like legislation about insurance, or better teacher training: Are ways to help autistic persons and those who take care of and support them, now and today.
No love for mirror neurons?
You focus on everything related to autism (and that includes the science–all I have to do is scroll down one entry), and that’s why we–the parents of children on the spectrum–come here.
We have done something very close to what you did, just short of moving into the house. It involved a 2000-mile move, my decision to walk away from a very good tenure-track job, and a resignation to live in a location we had sworn we didn’t want to live again. It involves my aging in -laws, a school district known nationwide for its excellence and that is the best around for kids on the spectrum, and our reorganizing our personal dreams. And we did it for our son(s) and our family. Yep, it was absolutely the right thing to do
I’ll take mirror neurons over glutathione—your story sounds a lot like ours. We did have to “reorganize” our dreams and plans too, in unexpected ways—–and it’s definitely, definitely, been the right thing to do.
We just made an 1,800 mile cross-country move. No family or friends here, but for Jack (as my husband put it) it was a home run.
I was listening to the radio this morning and heard John Lennon singing,
So this is Christmas
And what have you done
Another year over
A new one just begun.
Of course I thought about Jack and the progress of the last year, which was really, really minimal. I am past the point where I’m hoping for a “miracle”, but I hope the big move turns out to be the right thing for Jack. So far things are looking up. The services, the school are much, much better…
I’m thankful we had the opportunity we did to move where we could get some help. Everyone should have the opportunity. You are right. There is much work to be done.
You and Kristina nail it, autismville. Instead of moving across the country or even into the next school district or in with your parents, kids with needs should be able to receive them wherever they live. Everyone should have the opportunity. It’s unfortunate that for a school district to be viable in this arena, it must often rely on outside donations; the inevitable outcome is a lopsided availability of therapies, etc., in districts whose residents have more disposable income to donate, often accompanied by more aware, more knowledgeable, and more demanding parents. While it is a parent’s responsibility to learn as much as possible, part of that process is having experts available as guides. Our district has an “autism specialist” who will visit a family about modifications at home, etc. I’m pretty sure that’s not common in public school districts in general.
We also moved across country several times. First to live in a “nice region” with job promotion (Indiana), then back to my hometown for better school district and closer to some relatives and alleged friends (California) then, facing bankruptcy, we moved back to Arizona to improve the family and financial situation.
The first move to Indiana had nothing to do with autism but the subsequent moves had everything to do with it.
We’ve learned that you must address all facets of familial relations for a place to really work in the long run.
We thought seriously about moving to a location with better school services, but instead made the difficult decision to stay and fight the school district. After about 2 years of long, hard battles (which includes filing an IDEA due process claim) we are finally getting something approximating the services that my son is entitled to. In retrospect, moving would have been less stressful. Still, there was some satisfaction in having the school district finally cave in.
And there also has to be some satisfaction in knowing that you probably have made a difference for the people who come after you who have similar needs. Way to fight the good fight.
I do think that the district we are currently in has a good program (with its own autism specialists, and the teachers make home visits) because there were parents before us who challenged what they were being given. And now I know it’s up to us parents still to be demanding and educated and willing to advocate for our kids’ particular needs, to keep the program going. Charlie will be in middle school next year and the district’s middle school program just started last year, and a high school program would be new, too—-means a lot to us that, now that we are here, he can go to school in our town, rather than being bused elsewhere.
The moving has often been very positive for us. My husband and I truly wanted to be back on the East Coast and we would not have quit our jobs in the Midwest, except for Charlie—-doing that seemed too scary and uncertain. And the we found ourselves doing just that.
We chose not to make a perfect move because, well, the unperfect part of it was leaving a fantastic school where Patrick is thriving. I don’t regret not making the move though.