There've been several very good blogs, articles, and other helpful tidbits posted lately for families like ours who are doing the transition shuffle. I'll try to share resources here whenever I come across them.
Autism Speaks this week highlighted a Laura Shumaker post that talked about transition as a marathon as opposed to a sprint. It was really a two-in-one post, since Shumaker also shared the comments of Caryn Sullivan's recent blog about her transition IEP meeting for her 20-year-old son. Sullivan was told that upon leaving school, he could spend 4 hours a week doing clean up at a light industrial facility. I completely understood her reaction: "Seriously? Four hours per week emptying garbage? That is the end game, after the scorched earth attempt we made to socialize and educate him, at great expense to taxpayers and ourselves? He has skills and brainpower."
I had the same experience last April when told that our son Fickle Fan's job experience this year would be picking up recycling around the school. Seriously? After 14 years of an incredible struggle to educate and include him?? Tears were shed. I actually complained enough that we got an upgrade. Sort of. For the last 4 months he's been shredding paper at a home inspection company. While I'm glad he's had the chance to go out to a job site, I don't think it's one where he's had the chance to interact with other employees or demonstrate his strengths and skills. I had envisioned that work study would be an opportunity for Fickle Fan to job shadow at various sites around the city, try out different work environments, and explore the world of work. Not quite. At least not yet.
This could be Fickle Fan's last year in school. If all he has on that resume is picking up garbage and shredding papers, I'm concerned that all he'll get is more of the same when he leaves school.
We have some very promising programs here in Indiana, putting young adults with developmental disabilities into better jobs in their communities. I really want to walk down that road, not the one that leads to the four hours a week picking up garbage. Otherwise I may need to quit my day job and begin a new life as job developer/coach/placement specialist. Scary. I'll keep you posted.
You can't see it, but my husband and I are doing little celebratory dances this week. Actually, it's probably good that you can't see it. Neither of us can dance. Fun for us, maybe, but not a pretty sight.
Why the celebration cha-cha? Yes, Michigan State just whomped Michigan--always a good thing in our book-- but the real reason we're dancing is that Daughter Dearest (DD) is making progress. Or maybe Progress, with a capital P. DD, who's 20, got her first job three weeks ago at Kohl's. She worked three days this week, is keeping up with her Algebra class, AND today she volunteered with the Kohl's crew at a local therapeutic equestrian center for an annual event. Not so unusual for most 20 year olds, maybe, but for DD this was noteworthy. More than noteworthy. Celebration cha-cha worthy!
Last post, I explained DD's battles with both OCD and Asperger's. The last couple of years have been doozies. She crashed and burned her first semester of college. Came back, tried taking classes locally at community college, but struggled there too. Began applying for jobs, but never got past the first interview anywhere. She spent a year in therapy and her physician tweaked her meds, to address symptoms of depression and her extreme lack of focus and motivation. But for the most part, we were going nowhere fast.
So here's the ta-da! part: This past summer we had a counselor, well-versed in autism, do an educational evaluation for DD, not only to rule out Asperger's, but also to learn more about her strengths and challenges. It was an eye-opener. We knew she was bright, but her counselor revealed that her IQ is actually very high. Despite her struggles with basic college Algebra, DD scores off-the-charts in computational math. Somewhat less so, but still high, in applied math. Her organization (executive function) and lifeskills, however, are way below normal, and she has extremely high anxieties and low self-esteem. DD would stop attending courses if she felt she was not doing something right or if she hadn't completed the homework or studied for a test. She was guilt ridden and stuck.
The counselor confirmed that, though it's a tough call because she's on the fence in a lot of areas, DD is on the Asperger's end of the autism spectrum. We always knew she had traits, but girls with Asperger's present so differently from boys, that we just didn't see the ASD. We considered her quirky. Her OCD was our biggest concern. The counselor also helped DD understand that obtaining disability services and supports would be key to her success in school, since she would need tutoring, extra time in exams and understanding from her professors.
So that's helped. This semester has been one of trying out the supports to see if they can help DD not only stick with it, but shine. She's gotten an A on the first test. Mid-terms are next week. We'll see.
Meanwhile, we've also been working since the beginning of the year with Indiana VR. In the spring, she began working with a local agency providing employment services. They interviewed her, tweaked her resume, and then had her fill out applications. They even took her to job sites to submit the applications--something DD was always loathe to do. Kohl's hired her last month. So amazing. And thank you, Kohl's, for encouraging your employees to volunteer in their communities. We'd been trying to get DD out to volunteer for the past year. It's a good thing to do, it bolsters the resume, and it helps people make connections with one another.
Okay, enough already. We know that sometimes it'll be two steps forward and one back, but right now good things are happening. Do the cha-cha!
Okay last time I tried this, Google Chrome crashed on me as I was half-way through my post. Not a good sign. We'll see what happens today.
Since we were practice blogging (thank you, Arc of Indiana), I threw my first post up there to see if it would stick, so to speak. I jumped right in, though, without introducing you to the cast of characters. Rude of me. So here we are:
Anne: That's me. Occasional writer, part-time employee, wife, mother of two. Procrastinator extraordinaire. Eric: My husband. Vice president of human resources at a hospital one state over. Quirky sense of humor. Tigers, lions, Spartans. Yes, we are and will always be Michiganders at heart. Daughter Dearest: Our oldest. Part-time college student. Part-time brand new employee. Constantly battling OCD. Now learning to accept that she has Asperger's as well. Passionate about fantasy fiction, online escape games, anything with dragons. And Glee, of course. Fickle Fan: Our son. A senior in high school. Diagnosed with high functioning autism at 3 1/2. Passionate about football (but his loyalties tend to shift to whoever's in the lead--thus the name), Top Chef, movies, plays. Passionately hates school. Bullet: Cat in residence. She adopted us six years ago. I know: The name is weird, but she brought it with her. What can you do?
I have a few ground rules. I don't feel comfortable talking about my children unless I have their permission. I did ask; I do have permission. BUT, I'm not allowed to post their photos (so Fickle Fan's picture, in my first post, needs to come down). Darn. That limits my ability to decorate my space here, but I'll do what I can.
It isn't my intent to embarrass my children (although I'm good at that!). Rather, we're sharing what we're going through so that we can learn and other families might learn from our experiences, good and bad.
Okay, Chrome has already crashed again. So I may need to post this prematurely, just to get this up there, and then figure out what the problem is. Aaaaargh!
For the most part "Two in Transition" will focus on how we as a family are facing the opportunities, frustrations, transformations and unknowns of the transition process. Transition is the fine art of helping students with disabilities move from high school to the world of work, community participation, and postsecondary education or training. It includes special needs trusts, guardianship, college planning, student support, driver's ed, dances, relationships, housing, employment, and more.
Like an increasing number of families who have children on the autism spectrum, we live life in two states. We struggled mightily in downstate Illinois to support Fickle Fan, but there was a painful lack of services, educational training and understanding, medical support, and community acceptance. Sorry, Illinois, it's the truth. Eventually, in order to provide Fickle Fan with a better future, we decided it would be necessary to leave the state. My husband, however, has a good job, with a good retirement plan and works with a team he likes. Rather than yank that stability rug out from under us, we opted for the two-state solution: My children and I live in Indiana; my husband continues to live in downstate Illinois. For the most part he comes here on weekends; when he's on call or for special events, we'll go back there for weekends. Yep, it's a little strange, but it actually works. We're now in our fifth year of this arrangement, and I think it was a good decision on our part.
So, that's the status. Next time, I'll give you the scoop on Daughter Dearest. And, as always...
