A Suspension on the Way to the Dance

I'm baaack.  Finally. 


"It goes on the blog."  I keep saying it. Every new wrinkle or bump in the transition road we're traveling.  It goes on the blog.  Except it hasn't been going on the blog, because I haven't been writing it.  Mea culpa.


So here goes again.  I'm going to try gluing my fingers to the keyboard come what may. American Lit papers, PowerPoint presentations on India's global economic position, research on varying viewpoints on euthanasia.  It all has to get done, but I will declare Mom Time on the laptop so I can share what else is happening besides homework in our house.  We continue to ride the autism roller coaster while we're at the transition carnival.  It's a white knuckle ride, and I think you should experience it with us. After all, why should we have all the fun?




So since it's freshest in my rapidly decaying, post-50 brain, we'll talk about latest first. The bad news. Our soon-to-graduate son was suspended for five days last week. After not having a serious incident in school for over a year and a half, I got the dreaded call from the assistant principal because FF pushed and threatened another student who decided to take it upon himself to tell FF why it was inappropriate to look over someone's shoulder while they were on the computer. FF felt belittled and insulted, and in absolutely no time at all, he rocketed from zero to sixty in the anger zone.  It's not a pretty picture when it happens. Seven weeks from graduation. Sigh. 


Why is this a transition issue? Because it means FF is still prone to this very dangerous type of over reaction.  And it means it could happen on the job. (IF he ever gets a job, of course--we'll explore that in another blog episode.) 


We explain it to him visually (i.e., "This is how the school measures what the other student did"--holding hand out flat, palm parallel with floor at about knee height.  "But this is how the school measures what you did"--holding hand out again, but this time higher than my head.).  And he does understand that he acted inappropriately and lost control of himself and his emotions. But, to our dismay, at the ripe old age of 18--yes, he's now 18--he's still very immature in a lot of ways. He's not remorseful and is still very angry at the other student.


This is the nasty side of autism that many people don't want to talk about. For us, it's gotten better as FF has gotten older, but obviously, it hasn't gone away.  And for the most part, because he's higher functioning, he's on the "front lines" every day at school.  I suspect that most students know he's different, but most don't know why. He does't have an aide. He doesn't rock or flap his hands or have most of the obvious stimming signs of autism. So I think people expect more of him.  Usually that's a good thing.  But not always. 


An employer should know about FF's emotional triggers what to do in the event that he would go off the deep end. Granted, there are probably plenty of adolescent teenagers who've been in fights at school, who go on to get jobs and have stellar careers. I'm betting they don't tell their potential employers about what went on in the high school hallway when they felt "dissed."  


I don't think it's necessarily fair that FF should have to disclose his anger issues when other teens don't.  But it's a safety issue, one we'll need to discuss with Voc Rehab and his disability services provider (if he's determined eligible for employment services). I guess I just feel obligated to let them know that when FF is in the anger zone, he can become physically aggressive, throw things, swear and be verbally abusive. He's an oversized, talkative teddy bear most of the time, but definitely not when he's in in the anger zone. We had been breathing sighs of relief, because we thought he had moved past these episodes, but it's scary to see this happen again. He could hurt someone, and the police could be involved. It's my ongoing nightmare.


To address these issues now, we need to be sure:


1)...there's a teacher in the room.  There was a sub on duty the day of the incident, but his actual teacher has been out sick (unbeknownst to us) for almost two weeks now. We're working with administration so that he can be in another classroom with a teacher he likes until his teacher returns and until we have a plan to reintroduce him to the class. It doesn't excuse FF's behavior, but inadequate supervision in a classroom for a long period of time is a recipe for disaster. 


2)...he learns to recognize when he's going off the deep end emotionally, knows exactly what to do about it, and practices that skill. So far, we've talked at home with him about what to do, but he needs to go through the motions in school with his teacher, a speech therapist and selected members of the administration. 


3)...his psychiatrist is kept in the loop. That's the other ugly little secret of autism: Many of our children are on some pretty heavy duty medications.  The great thing is that those meds have enabled him to attend school. Without them, I don't know where we would be.  The flip side is they all have side effects and things change as the child grows and develops.  Sometimes dosages need tweaking; sometimes we need a new med altogether. This was just one incident, but because it involved a suspension, we let the doc know.


He's back in school now, but his teacher isn't, which means things aren't back to normal, but they're better. 


So, we did have some good things happen last week too. (It's not all doom and gloom, I promise!) So that's my next post: the good news.  Stay tuned!

Venting Aloud: Mom Quirk #5,649

I'm prone to stream-of-consciousness venting and to-do lists.  I think this is a pretty common quirky behavior, as quirky behaviors go, at least in my age group.  I've recently discovered, though, that my out-loud ramblings on all-things-undone or life's daily frustrations just drives my daughter up the wallpaper.  Like fingernails on a chalkboard. Don't get me wrong, annoying my children is one of my specialties, but I had no idea this was such a major issue for her. I suspect it's part of her OCD.  

The "air to-do list" (similar to air guitar?) goes something like this: "Oh, lord, I've got to call the furnace guy today," or "Bills, bills, bills..puhleeeze let me remember to put stamps on those buggers and stop at the post office tomorrow morning before work."  This is, of course, said to no one in particular.  I guess I just think that by saying it out loud it might actually get accomplished.  Last year, however, I discovered that by vocalizing my things-to-do, DD is driven to the boil-over frustration point, because, it turns out, she's always believed that she is then responsible for making whatever it is happen--abracadabra!-- even if it's entirely out of her control.  


Once I realized what was happening, I explained it all to my husband who admits that he too gets frustrated by my air list. He's always thought I expected him to solve my problems or tackle my tasks when I'm listing aloud! Good grief!!  No wonder he's rolling his eyes on a regular basis.  Thirty years of miscommunication! So now I feel a little stifled.  Guess I'll resort to mumbling or wearing one of those listpads and a pencil strung around my neck (and please don't suggest I get an iPod--like my daughter, I'm technically Amish).


Who knew?  :-)

Emptying Garbage. Seriously??

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. 


As a family we are, after all...moving on.

Do the Cha-Cha!

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!


As a family, we are, after all...moving on.