I believe in one-stop resource shopping whenever possible. In the wonderful world of transition to life after high school there are a lot of decisions to be made, options to choose, and pathways to ultimately follow. And that means research.
But rather than have you do the red-tape runaround at your child's high school guidance department, your local library, or even a couple of hundred different Google searches (how many different ways can you say "secondary transition for students with disabilities"?), I have another option for you: Stay seated and breathe. Then click here. That's a link to "Now What? Resources for Life After High School." It's a 5"x8" two-sided card, chalk full of links to websites as well as Indiana and national organizations that specialize in employment, college preparation, and community living for people with disabilities.
"Now What?" is a publication of the Center on Community Living and Careers (CCLC) at the Indiana Institute on Disability and Community. True confessions: I work at CCLC--ironic isn't it, given that I have two children in the midst of transition?--but I'm not a transition expert (although I obviously have some experience living on the transition front lines for the past several years). I work in communications. But I have a number of colleagues who excel at this sort of stuff. We put together "Now What?" for high school transition fairs around the state. It's not an exhaustive list, but it includes a lot of the essentials.
I would also highly recommend the Transition Toolkit from Autism Speaks. Toolkits are free, contain information customized for your state, and are full of information about things your child needs to know as they make the transition leap. Autism Speaks will send you a Toolkit--one per family of a child (between ages 14 and 22) with autism--or you can download selections or the whole Toolkit from the Autism Speaks website.
As you and your child work on goal setting, by the way, you don't necessarily pick one goal, or one dream, or one path. Who does that?? Most of us participate in our communities, vote, volunteer, attend church, exercise, meet friends for dinner, and much more. Some of us take training classes, get a college degree, and/or explore continuing education. Many of us also work in full- or part-time jobs--and many of us have had not only different jobs, but have taken some pretty meandering turns in life, exploring more than one career.
We're not automatons, wound up in the back with a key, and then set down to amble down one path only--postsecondary education, employment, or community life. Neither are our children with disabilities. They shouldn't be made to choose just one avenue for their transition IEP. I like the combo approach. Not to sound all Martha Stewart-ish, but more than one goal, more than one pathway to explore is a good thing!
If you know of a transition resource treasure trove or even a particular website that's been helpful to you or your family, don't be shy: Please share with your comments below!
Sometimes people come along in our children's lives who really make a difference. You probably hear a lot more about the instances where the opposite is true: when a teacher, aide or therapist has taken advantage of their position over a student and at the very least wasted precious time, or, at the other end of the harm spectrum, actually abused a student mentally, emotionally, or physically. There's a particularly nasty instance of this on the internet right now. So this post is, rather, to sing the praises of tutors who've come into our lives in the past year. Call it the Tale of Two Tutors, if you will.
Yes, this is a long post, but hang in there, especially if you're the parent of a teen with HFA or Asperger's. You might find some hope here.
Daughter Dearest has struggled mightily for the past three years with high anxiety in the classroom paired with some pretty severe executive function challenges as well. (If you're just joining us, read Introductions Are in Orderto catch up on who we are and what ails us, so to speak.) She's had a tendency, as a result, to abandon her college classes after the first four weeks or so. It was painful (and not cheap!) to watch her go through this semester after semester. We'll come back to DD and her tutors later.
Fickle Fan, now in his senior year of high school, is about to take the Algebra End-of-Course Assessment (ECA) for the fifth time. Yes, the fifth. In addition to his extreme problems with writing, he's also been living with an intense hatred of all things math-related, probably since about the third grade. (For some reason, this doesn't seem to be unusual in a subset of students with high-functioning autism. I know others going through this same math aversion as well. Something to do with the hardwiring, I'm sure. Researchers, we need more studies on this problem, please!)
For those of you not from Hoosierland and/or who don't live and breathe all-things-high-school, here's the scoop on the ECA: by state law, high school students are required to take the algebra, English and biology ECA tests. Currently, they need to pass the algebra and English tests in order to graduate with a general diploma. (More on diploma choices in a later post--don't get me started on that tangent now!) Students who don't pass the ECAs their first time, need to not only take the test again every time it's offered--in our case twice a year--but also take a remedial course to prepare for the test.
FF passed the English ECA following stellar remediation in school his sophomore year. We were thrilled. But he's been beating his head against the Algebra brick wall for four years, really five, because the process started in 8th grade. His freshman year he had to take Algebra and remediation simultaneously, because his 8th grade scores, although close, weren't in the passing range. After just five weeks of freshman Algebra, his resource teacher shared with us that FF's Algebra teachers didn't think he would ever pass the test (despite his "almost" scores the previous year) and would probably only get a D+ in their class. Rather than feeling supported and encouraged in remediation, he felt tortured. So did we, with the homework. It was a disastrous situation for us. Rather than repeat it, his sophomore year he completed remediation by doing an online program that was extremely unhelpful, didn't teach the skills FF needed, and didn't always cover the material on the test. His junior year, he took remediation with his resource teacher, and though he improved on the test, he was still a ways away.
Okay, enter the wonderful world of tutors. We started with DD, who needed to pass her freshman Algebra course at Ivy Tech. DD, keep in mind, is highly intelligent and scored fairly well on the math section of the ACT. She's not derailed cognitively or from a lack of skills; she's challenged by other aspects of her Asperger's. That's difficult to understand for a lot of tutors (and teachers). Ivy Tech has campus-based tutors, but it's at a drop-in center where you get whoever's on duty that day, and that tutor may be working with several students at once; there's no continuity and no focus or understanding of DD's particular challenges or strengths. Moreover, DD would need a boatload of courage and self-advocacy to walk into the tutoring center, and, at the time, she was highly skeptical and didn't see the value in having a tutor. (Postsecondary support for students with high functioning ASDs is another post that's on my to-do list.)
So we sought out and found a tutor who is not only truly gifted in math, he also has has Asperger's himself. We were, not surprisingly, hesitant about this arrangement, but he insisted he could get her through the class. After the first two weeks, he took me aside and assured me that DD is extremely intelligent and would not have a problem. And she didn't. At first she still struggled with studying and homework deadlines, but meeting with the tutor-- usually at the public library--helped keep her on track with assignments and even helped her work through some of the concepts she just wasn't getting in class. After flunking this class the first time (she stopped going), DD passed with a B.
During the summer, the tutor approached us and said he could help FF even more than he could DD. We politely said we'd think about it, but knew FF would balk at the very suggestion of giving up precious afterschool time to work with a tutor. And he did. But rather than undergo in-school remediation again his senior year, he eventually agreed to work with the tutor twice a week, and school staff blessed that arrangement as well. Tutoring began in the fall, and we gradually increased the time to 90 minutes twice a week, so that FF wouldn't have to worry about dreaded homework. He didn't pass the ECA in December, but after just six weeks of tutoring, he again increased his score to "almost." He's probably two or three problems away from passing. And with the data from the first test, it's now evident that what FF needed the most help with is graphing and learning to use a more sophisticated calculator. His processing speed for problem solving is extremely slow, so the calculator is a must. For the past several months, they've been focusing on those skills and doing practice tests. FF is at his wits end and really wants it to be over, but he's tolerated the repetition and the time investment. I'm pretty sure he'll pass this time, and probably with a pretty good margin. I'll let you know what happens. One way or another, the tutor deserves a medal. So does FF. Does he like or appreciate Algebra now? Absolutely not! He still hates the subject with a passion, but he realizes this is just to get him through the test. Fortunately, the tutor has the patience of a saint and doesn't take personally that fact that FF isn't willing to connect with him on a math-loving level.
Back to DD, who this spring was about to retake an Exposition and Persuasion writing class. Different skill, different tutor needed. This time, though, after seeing the value of working with a tutor, DD was ready and willing to accept help. After contacting the English department at IU, we found a grad student who had an interest in students with Asperger's. Long story short, DD has completed all her writing assignments and is passing that class with an A. More importantly, though, the tutor not only helped DD improve her writing and researching skills, she also helped with the organization challenges and took the burden off of us, so that we didn't always need to be the nagging parents. The tremendous side benefit has been that after the first couple of times meeting at home, DD and the tutor made their own plans to meet at a local coffee shop, so it became a social opportunity as well. DD's mood has brightened and we've watched the stress and anxiety melt away. Her competence and self-confidence have also risen. Hallelujah!
We pay for tutors out of pocket, of course. Usually about $25/hour, but we've increased that to $30 when we've seen their work and dedication. I wish that the schools and Ivy Tech had these kinds of supports at the ready for students like ours, and I'd like to see parent groups advocate for that. But for now, we believe it's an investment well worth making. And after watching how far our children have come in the past year, I think teaching the benefits of and how to work with tutors should be a goal included on the IEP of almost every 8th grade student with a high-functioning ASD.
So, here's to tutors. You're an essential part of the successes we've had in the past year. Please know you are valued and have our many, many thanks!
Like most teens, both my children like to sleep. Until very recently Daughter Dearest (okay, she's 21, not exactly a teen anymore) was notorious for sleeping until 2 or 3 p.m., especially if one of us didn't go up to her room and insist in obnoxious Parent Speak that she remove her keister from her bed. "And I mean, now!" She's frequently up most of the night, so it's not really surprising that she is dead to the world every morning. I'm told it's an Aspie thing.
Our son, Fickle Fan, on the other hand, gets up pretty well on his own. On weekends. And only on weekends. The Monday-through-Friday morning routine is legendary in our house. Epic battles. And for Fickle Fan this has been going on since he was seven or eight years old. With him, it's not strictly a teen thing, it's definitely more of an I-hate-that-stupid-school-and-you-can't-make-me-get-up kind of a thing. Teendom has only made it much, much worse. Now he not only gets up late, he's angry with the world--me, mostly, but the whole world too--and nine times out of ten, he hasn't brushed his teeth, washed his face, or put on deodorant. And don't get me started on shower avoidance. This is not one of those we-need-advice blogs. Really. We have tried just about everything: motivate, reward, withhold the reward, teach, teach with pictures, fog horn alarm clocks, soft music, lights, food, caffeine, medication tweaking, beg, plead, and, yes--I'm not proud of it--yelling, screaming, and physically dragging the boy out of bed. I have not used a backhoe yet. Or TNT. Hmmmm. Our relationship was so frayed from the a.m. mania and arguments that I actually toyed with hiring a personal aide who could come to our house in the wee hours of the morning, wake the boy, and take him to school. But it was extremely expensive and I couldn't find someone willing to work the hours. (Note to policy makers: The Medicaid waiver would've come in handy here.) The fact that our school system, in its infinite wisdom, decided this year to start classes for its high schools at 7:30 a.m.--despite all of the research telling them that due to altered circadian rhythms in adolescence, teens are much better off with a later start to the school day--was the last straw. Rather than have him chronically missing his first class of the day, our semi-solution was to alter his schedule. He comes in an hour later than everyone else, arriving with about 20 minutes left in the period, to a Resource class. I still fight the fight, but it's not quite as bad as it was, and knowing that he's not missing an academic class, I'm less stressed. Originally, that grace period, the first 20 minutes of his day, was to be spent on transition activities--practicing job interviews, filling out applications, participating in career development activities, etc.--activities that FF really needs but he's not experiencing because he's getting a general diploma (more on the "gap" kid issue later). Unfortunately, none of that has happened. And since he's missing most of that first period, I wanted him to stay past the 2:55 dismissal so that he wouldn't be shorted that time. My thought was that he could work in the library with a tutor, do some work study either there at school or in an actual work environment somewhere. The school balked at that. Dismissal time is dismissal time. No way would they extend the day for him--though they do for students in detention. So we have sort of cheated him out of a class experience. He still has all his credits, though, and he's less apt to be in a mood when he walks into an academic class. All in all, I think this was the right thing to do. As for Daughter Dearest, things have been improving across the board for her since January, including her sleep-wake cycle. I attribute that partly to her part-time job, which occasionally requires her to be at her cash register at 8 a.m., and partly to some progress she's making in school, which has lightened her mood and her confidence. Could be age too. I'm hoping those factors work for Fickle Fan, too, once high school is a yearbook memory. Sleep tight, teens.
"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!
A typical day for our 17-year-old son begins with me dropping him off at school. Classes. Eating by himself in the lunchroom. Driving to his work study job with his job coach. Shredding paper alone or with the job coach (he says there's usually no one else there when he's shredding). More classes. Home (I pick him up). Snacks and game time on the DS. Meet with the algebra tutor for an hour. Walk outside. Dinner. Madden football. Homework. Bed. Repeat, every weekday.
What's missing there? Social activity and connection with other teens. He has no friends. FF is not currently participating in anything school related or even any community-sponsored activities for teens. (Actually, there are very few of those anyway for 17-year-olds.) He can't compete in sports, hasn't attended either of the two school-sponsored dances, and is not a member of any club. New research from Washington University in St. Louis suggests FF isn't alone in his aloneness. (See "Teens With Autism Face Social Isolation.")
As a kid with high functioning autism, FF is thoroughly opposed to activities created solely for kids or adults with disabilities. Special Olympics, Best Buddies, and adaptive classes at the Y are okay for other kids but not for him. In his mind they are exclusive rather than inclusive. And he bristles when people suggest he find a friend who also has autism or someone with disabilities who has similar interests. I understand FF's frustration. If I were in the market for a new friend, should I be limited to near-sighted, post-menopausal women with thyroid problems?
So where does that leave us? See paragraph one, above.
I believe that the majority of teenagers--whether they have ASD or not--benefit from being included and having positive relationships with friends of their own age. There are people who disagree with me on this. Teachers, some parents, and even some folks on the spectrum believe that many children with autism prefer to be alone and if given the choice, will opt to play by themselves. Indeed, when presented with an opportunity to participate in a group activity or after school event, my son Fickle Fan will now almost always respond, "No, I'm fine."
But is that because he'd rather be alone? Nope. I don't believe it for a second. It's a defense mechanism. It's become too much work to navigate the social issues of teendom. He doesn't know what to do or say. He doesn't always know the vernacular, isn't in on the issues kids are discussing, and can't always pick up on the social nuances or cues. It's tough. I get it. But it's so important. Having a friend or at least a group that would include him would help him connect, give him things to do, help him see other perspectives (or at least understand that there ARE other perspectives), and give him something to look forward to during the week.
We've tried addressing the social isolation issue in team meetings or case conferences at school. In general I think staff are open to suggestions, but for the most part they don't see it as a major issue. FF is actually well liked in his classes, they say. They've tried to assure us that isolation is the norm these days, because most teens are only connecting with one another via the internet or texting--both of which FF avoids. But I don't really buy the teens-only-have-cyber-relationships point of view. It's not what I'm hearing from the few parents of teens who I know. Yes, they text and many are more connected to their FB pages than their families, but they also meet up at the games, go out for pizza afterward, do service projects, hang out at each other's houses...
Helping build sets with the theater crew, meeting with a book club, taking pictures for the yearbook, participating in a stop-motion animation or filmmaking club, joining Habitat for Humanity (as long as they don't meet at 7 a.m or in the pre-dawn hours--a subject for another blogpost)--these are all things FF is capable of doing. But getting him to take that first step now is very challenging.
So how do I know FF would benefit from social interaction? He just returned from the annual Thanksgiving trek to visit our families in Michigan, a trip he really looks forward to every year. And, like every year, he had a fabulous time, not because of all the garlic mashed potatoes and two kinds of pie, but because he loves seeing and interacting with his cousins and uncles and aunts, playing football, going to movies, having sleepovers, hearing outrageous stories, and listening to his uncles bash the refs who are obviously biased and hold deep seated prejudices against the Lions. His cousin, one month younger than FF, now has his first job at McDonalds, so FF is now ready to go out and fill out applications. He's inspired. Those are all good things, things most teens experience as a matter of course, but that FF gets just once or twice a year.
And it's not just family FF responds to. The high school football team (I've thrown my kudos to them in a previous post), are great with FF, joking with him and helping him feel connected to the school. So I know that peer connection is important to him; I just don't know how to make it happen.
First, as always, it can't be mom or dad who suggest an activity. Parents are hopelessly pathetic, a view FF shares with probably most of his peers. I think he also suspects that when I'm suggesting something, I'm working an angle--job skills, social skills, communication, independent living. And, yep, he's right on that one. So it can't be me that initiates the suggestion. And, increasingly, it can't be a teacher, even one he trusts.
I think schools and parents are at a loss as to how to proceed once students with ASD reach high school and adolescence. Here's my wish list:
More peer mentoring programs and training.
The use of peers to "recruit" kids with ASD to attend a club meeting, join the choir, help out with the chili cookoff.
Staff who can facilitate and guide social inclusion--"people bridges." (The school social worker paved the way for FF's workouts with the football team.)
And staff at each grade level who are looking at and helping create opportunities for social inclusion and who will help encourage kids with ASD to get involved.
Any other suggestions? If you have creative ideas for eradicating teen isolation, please comment. Or if you agree with the suggestion that all teens are isolated, let me know that too.
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...
So, a couple of years ago, I'm picking up my son from high school after weight training with the football team. Teen son, we'll call him Fickle Fan for now, gets in the car and after a moment starts snickering, with this very self-amused, mischievous little grin on this face. Fickle Fan has high-functioning autism so it's just amazing to me that he's working out with the football team (and he's accepted there!) in the first place. The wicked little grin soon leads to guffaws of laughter--infectious laughter. "Wow, Fickle Fan," I say, pleased that he's actually happy after a day at dreaded school. "What's so funny?" He looks at me, and for a minute this "Oh, no, my mom is here with me" expression appears on his face. He looks down at his lap and then says with this delightedly guilty look, "You don't wanna know, Mom."
I obviously had several choices there. As the parent of a teen with special needs and, especially one with a developmental disability and a social delay, I'm used to knowing all: what's up, what's down, what's the matter, what's for dinner. But he's an adolescent now. Fifteen-year-old boys are just not the I-need-to-rush-home-and-share-this-with-my-mom types. And that's not only okay, it's a good thing.
So though I'm thinking, "Uh oh! What disgusting piece of teen trashiness did he overhear in the weight room?" I laugh, and give him the moment. "You're right, Fickle Fan, I probably don't want to know." ...and I celebrate--his inclusion, his independence, his adolescence.
But rather than have you do the red-tape runaround at your child's high school guidance department, your local library, or even a couple of hundred different Google searches (how many different ways can you say "secondary transition for students with disabilities"?), I have another option for you: Stay seated and breathe. Then click here. That's a link to "Now What? Resources for Life After High School." It's a 5"x8" two-sided card, chalk full of links to websites as well as Indiana and national organizations that specialize in employment, college preparation, and community living for people with disabilities.
