Transition in the Trenches: Midwinter Mash Up

Notes. In no particular order, here's a little of what's been happening during January and February in our neck of the woods. These could all be little

individual posts, but today you get a mash up. Lucky you!

• Once again, as required, FF made the call tonight to the jury duty hotline. Once again, I breathed a sigh of relief--he doesn't have to go in to the courthouse--yet. He's on duty for the entire month and calls in every night to check his status. I need to remind him to make the call, but he's doing it on his own. Talking on the phone really isn't his thing, but calling a recorded information line is okay. He calls in his own med refills now too, but only because it's automated. No communication with an actual person necessary. Update: He made it through the month and wasn't called in. Whew!

• Polar vortex. In case you hadn't heard.

• He's gaining confidence at college. I dropped him off the other day for one of his classes and watched as he walked up to the door, backpack slung over one shoulder, jeans, Colts shirt, no coat despite the not too balmy 24 degree day. Just like every other kid. An hour and a half later, back in the car, chatting away about the instructor, the syllabus, the presentations he'll need to prepare. He's got this handled.

• The public speaking class is in the morning. Foolish, foolish me. I'm again scraping a 19-year-old out of bed. Today he got to class with all of a minute to spare, but I pity the person who had to sit next to him. Hygeine got left at the bottom of the priority list. For the 7,953rd time we had the discussion. Teeth, face, deodorant, hair, clothes. Update, one month later: Some progress. He's setting his alarm. I sometimes have to call him, but it's not an epic battle anymore. And he usually gets the teeth brushed and clothes on without me saying anything. Hasn't been late once.

• Addendum to that last note: Lots of grumbling about what FF views as my daily Style Commentary. I may be the autism mom version of Joan Rivers. It's not quite, "Are you wearing THAT!??" More along the lines of "It's too cold out to wear that," or "Find a clean shirt, please." Today's words of style wisdom had to do with the open zipper on his shorts (it was 9 degrees out, BTW, which I did not mention). I pick him up after class and am maternally aghast when I see his zipper still unzipped. When I ask about it, he tells me the zipper is broken. Oh, well then. Perfectly understandable. But NOT SO MUCH! It never occurred to him that it might be preferrable to find a pair of pants with a working zipper. This is why I continue to be on style patrol. 

• Polar vortex. 

• On her own, DD auditioned for and landed a small part in a student theater production. Four nights a week she's with her geeky drama peers, learning the Bard's lines and laughing. We support laughing. It's a very good thing.

• Without prompting--ooh, that sounds very nice; let's say it again--without prompting, FF had the instructor sign his accommodations forms AND he dropped off the copy at the disabilty services office. Color me impressed.

• It's freezing. 

• This semester DD and FF both have two classes. New tutors for chemistry and for public speaking class are coming and going. I am the official Tutor Seeker, Screener and Scheduler. 

• And Cab Driver. No progress on transportation. I come and go, to and fro. Classes, workouts, volunteering. Somewhere in between those, I actually go to work for a few hours. 

• In an effort to increase her financial responsiblities, DD is now paying us a small monthly rent. That and gas are pretty much her only regular expenses. She's now working somewhere between 18-22 hours a week, has her own checking and savings account, and is comfortable using her debit card for little things and for withdrawals and deposits. Paying rent gives her practice writing checks and paying bills. She's now paying for her own tuition and books, but we reimburse her from her college savings account. Next up: phone and car insurance. If at some point she moves to an appartment, she'll at least have an inkling of what financial independence is all about. At least that's the hope. 

• Update on that one. Out for a drive in our car, DD skidded into a ditch. Polar vortex, freezing, snowy roads. Hondas make terrible luges. Lots of damage but not to her, thankfully. She gets to pay the deductible. Isn't responsibility fun? The good news is that she held up, shivering and shaking for an hour, talking to both the sheriff's deputy and the cop that drove up while waiting for the tow truck. Cop even wished her happy birthday. Probably not her favorite day of celebration.

• Attic furnace sputters out during polar votex. Heating and AC guy gives it its last rites. Suggests a $5,000 replacement. And do it soon, he says. Ugh.

• For the first time since the nasty incident of almost a year ago (which shall not be further mentioned herein, ahem), FF is talking about getting a job. Maybe a summer job, he says. How to make that happen without any supports is the question of the hour. (FF is now on a postsecondary education path with VR and so no longer has any assistance for employment.) I'm happy, though, that he's ready to get back on the horse.

• February thaw. "We're melting!" (Think Wicked Witch of the West.) 

• Though neither child 'o mine likes to talk on the phone (see above), DD is now adept at pizza delivery. She will not starve. Yea. (The pizza boxes and pop cans will eventually engulf her, but she will not starve.) 

• Because of this newfound skill, the husband and I actually left the house for a night, went to dinner and stayed at a hotel about an hour away. They survived. We, of course, drove them nuts by calling often. Did I mention they're not Chatty Cathys? Short conversations. Meds were taken, garage doors were closed, the cat was fed. We need to do this more often. 

• Polar vortex reprise and, oh look, the Weather Channel is predicting substantial icing over the weekend. 

There will be warmth and sunshine again, right? Right?

Change Is Not a 6-Letter Expletive

In the autism world, "change" is a dirty word. If this were Hogwarts, wizards would be whispering the ch-word as if it were He Who Must Not Be Named.  But if we expect the secondary transition years to be successful, we need to stop blaming Change for all the evils that befall the world. I'm here to tell you Change has gotten a bad rap. Framed, I tell ya! It's been framed!

Chad in his room, from MTV's Word of Jenks.

Why? Who did this to poor, little innocent Change? We did. Teachers, therapists and, yes, parents. We've been trying to protect (and maybe coddle?) our children on the spectrum who tend to take comfort in their routines. It's true, though: poor, little innocent Change does seem to be present at the scene of a number of meltdowns and explosions. Just watch what happens when you tell a 5-year-old ASD child who has Frosted Flakes every morning that you're all out and she'll need to make due with Lucky Charms. Or, those of you who've been watching MTVs World of Jenks this season saw how Chad, now a young man with autism, handled the news that he was moving away from his childhood home. (Not a fan of Jenks yet!!? Just watching Chad's year of transition is worth it. See if you can watch this past season on Hulu or catch up on Xfinity.) 

Okay, at first glance it looks like Change is doing a number on our kids, so it's no wonder we do everything we can to avoid it. We've even taught our children the drill. You can hear spectrum kids tell adults they don't like change; that they need things to stay the same. But change is a part of life. Unintentionally then, we've taught them that because of their inability to cope with change, kids with ASD can't live a broader life with more experiences. We let them and even encourage them to walk the same path even when it becomes a rut. 

But do we need to? I think we've oversimplified the issue for far too long. And we're pointing the finger at the wrong culprit. It isn't Change that should've been indicted. It's Loss. And in some instances Loss likes to hang out with Change--but not always. Sometimes Change brings along good friends, like Happiness, Excitement, Opportunity and Better Circumstances. 

When you think about it, transition IS change. That's what it's all about. Graduation, jobs, transportation, college, more independence, maybe some new roommates, and sometimes new housing. And, yes, Loss is there. Transition means saying goodbye to high school teachers, bus drivers, friends, and familiar environments. But I think it's possible to cushion the blow if you prepare students in transition for both Loss and for Change's good friends. And then celebrate the changes as they come. 

In the season finale of World of Jenks, Chad had to move with his parents, away from the home he grew up in--a devastating loss for him. After the move, however, he was able to sleep in his own room for the first time in his life. In that instance, Change brought along Opportunity for Growth. 

In our case, we discovered fairly early that major blow ups could be avoided in change situations if we (and teachers) fully explained to son Fickle Fan both whatever new thing would be occurring, as well as what would NOT be happening as a result of the change. If we didn't prepare FF for the loss, though, and he only discovered it after the change had occurred, it could set off a little boy Krakatoa. So, ideally, it would work like this: "This afternoon you'll be going to a school-wide assembly. That means that today we won't be going to the library as we normally would. Instead we'll go to the gym with the class and watch a puppet show." If we knew that losing library period was a big loss to him, we might also see if there was some way he could go the library right after lunch or the next day. 

But, please note, it was just as important not to sugar coat the loss or avoid telling him about what he would lose, as it was to put a positive spin on the good things that could result from the change. Sure. I can only relate our story and how the plot plays out for us. Every child is different, and your pages may not turn the same way. Many of our kids on the spectrum, however, are pretty intuitive and are capable of understanding much more than we give them credit for. Sometimes, we had to explain things visually with a diagram or flow chart. Not giving FF the full story in advance, though, only makes him feel blind sided and betrayed. And more likely to distrust future change.  

The lessons here that apply to (Indiana) middle school and high school transition are numerous: the diploma vs. certificate discussion; the Core 40 curriculum; End-of-Course Assessments and remedial courses; academics vs. work study courses; dropping out, graduating at 18, or staying in school until 22; college and testing; pursuing a new interest; participating in an extracurricular activity. All of those things bring change. Most also bring a certain amount of loss (time and freedom are two of the biggies) as well as possibilities or opportunities. 

Each of these situations had to be fully explored and explained. The message here: More information for students and families in middle school is definitely a good thing, so that they can prepare for the bad, the ugly, AND the good. In fact, family transition training would be very helpful--but that's another blog. 

Meanwhile, please, give Change a break. Take him off of the Top Ten ASD Criminals List and let him party with his good friends. Loss will probably be there too, but he can sit in the corner. 

The Transition Checklist for Change

Quoting Gilbert and Sullivan, "I've got a little list. I've got a little list." (Works better if you sing it or at least hum along.)  

Check marks this past couple of weeks decorated the following transition to-do items:

• Met with Easter Seals Crossroads assistive tech department for an evaluation to assess fine motor skills and determine what software and hardware could be helpful for college classes requiring writing; for executive function support; and, possibly, for on-the-job supports. Awaiting their recommendations. (Paying out of pocket.)

• Met with new therapist to help son Fickle Fan deal with rigid, restrictive thinking;despair over lack of friends; frustration and extreme irritability and outrage; and obsessive thinking leading to anxiety. (Paid for through husband's health insurance.)

• Met with psychiatrist. See above. (Paid for through husband's health insurance.)

• Increased dosage of anti-anxiety med, resulting in much more relaxed boy and parents. (Paid for through husband's health insurance.)

• Daughter Dearest also met with her therapist. Definitely making progress. Yea! (Paid for through husband's health insurance.)

• Encouraged DD to seek out volunteer opportunities. She's working on it. Still need to follow up.

• Took FF to mock interview session. Kinda like speed dating--several local companies send human resource reps to spend 5-10 minutes talking with potential applicants so they can get some practice interviewing. (VR/employment provider support.)

• Took FF to his first actual interview, where he was again assisted by his employment consultant. (VR/employment provider support.)

• For the first time, 21-year-old DD went out to the bars with her friend and friends of friends. Worried but grateful parents waited up till 2:45 a.m. Thank you to the the tech engineers who invented texting for the ability to send and receive unobtrusive text assurances. We may be among the very few parents, btw, who are HAPPY to see their daughter go out bar hopping--social activity in a typical peer setting, yes! Also helps that one of the silver linings of the combo OCD and Asperger's is that she has no interest in alcohol, so that part we don't need to worry about. Like the parents of any other young adult daughter, though, we will continue to worry about the behavior of any inebriated idiots she may come into  contact with during these occasional outings. 

• Participated in bus training with FF and the local transit authority. Met with trainer, discussed shoulds and should nots of riding the buses, figured out how to read the system map and schedules. Then practiced riding the bus nearest our house, which, amazingly, runs right up to the door of the business he interviewed with! (No charge for training--a regular service of the transit system!!)

• Met with academic advisor at Ivy Tech. Though FF still has a good grade in his one class, the next class he takes should be a writing class. Big problemo given his dysgraphia. We're hoping that Crossroads training (see above) will help him with that. 

• DD also met with her academic advisor and signed up for two spring courses. After successful completion of those, she'll have enough credits to transfer to IU. (Neither FF or DD qualifies for financial aid.)

• DD met with her biology tutor. Going well. Still has an A. (Out-of-pocket.)

• FF went out with a 19-year-old son of a friend. We pay him out-of-pocket to take FF out to dinner, to the movies or wherever. 

• Covered more territory with FF in the Indiana BMV's Rules of the Road booklet. Wants to take the written test and see if he can take drivers training--though he knows he may not be able to drive and that Crossroads would probably need to do the training and eventually assess his readiness to drive. (That would also be out-of-pocket, I'm sure.)

All this took place in the last two weeks. Transition takes a pretty big investment of time (and, in our case, money.)

FF's biggest complaint in the past couple of months? Change is not happening fast enough. Hmmm. Really!??

A Day at the BMV: Getting a State ID Card

Son Fickle Fan takes after his dad--he's somewhat of a political junky. Not surprisingly, FF is looking forward to voting for the first time on November 6. To make that possible, he spent some time at the Indiana Bureau of Motor Vehicles in May, getting his state ID card. I'm not going to get into the controversy of voter identification laws in this blog post, but the fact is that Indiana now requires ID at the precinct before they'll let you have a ballot. FF, though he's now 18, doesn't have a driver's license, thus the need for an alternative.  

This is another one of those Major Steps along the transition road. In addition to exercising his voter rights, there are other reasons for having an official ID, including opening a bank account, writing checks, filling out some job applications, enrolling in courses and other instances where he would need to have verification of his identity. 

Was it difficult to get one? Nope, but it takes some preparation, so please first check out the BMV website, especially the section listing which documents you’ll need to have with you to apply for a Secure ID.  There’s a handy little checklist they’ll give you on the site.  Also note that if you’ve never had a driver’s license or ID from the Indiana BMV in the past, you need to apply for a Secure ID. (There is also something known as a non-Secure ID, but it’s only given to people who already have a license or ID but who don’t have their Social Security card or documentation necessary to prove Indiana residence. You can still vote with a non-Secure ID.) According to the BMV, “A Secure ID meets federal government requirements for driver’s licenses, identification cards and permits.”

So here’s what you need to bring with you:

• a document proving identity--usually a Passport or a certified copy of a birth certificate;
• a document proving Social Security number (preferably a Social Security card, a W-2 form, or a paystub showing both the applicant's name and SS number)
• a document proving lawful status in the United States (the Passport or birth certificate will also work for this); and
• two documents proving Indiana residency.

It's the two documents proving Indiana residency that were the challenge for FF. After all, he doesn't pay bills yet, doesn't have a job, and didn't have a voter registration card or any of the other suggested documentation (there's a list on the BMV site). However, you can submit documentation on behalf of someone with a disability (the BMV uses the term "incapacitated," which I detest!) if you have legal guardianship or if you are a legal caregiver who lives with the applicant and you are at least 18 years old. So, in our case, I needed to sign an Indiana Residency Affidavit for FF and also show my driver's license, my birth certificate (or Passport), two documents proving my Indiana residency and a letter proving legal guardianship. Thank heavens, you can leave the partridge in a pear tree at home. 

Unlike a driver's license, there is no fee charged for obtaining a Secure ID.

My biggest fear was that we would need to wait for hours in long lines or sit forever in torturous folding chairs, waiting for our number to be called--the usual BMV nightmare. Fortunately, we went on a Tuesday morning, so it wasn't incredibly busy. My husband was also with me in case FF needed to go out for a walk or a break, but the wait was actually very short.

I really only had four relatively minor complaints about the process, which I'll share with you here, only so that you'll know what could happen and how to prepare accordingly if you're also planning the trip to your local BMV. 

1. The BMV staffer assisting us, though very nice, kept having problems with his data entry, which meant that FF had to have his picture retaken three times and the guy had to re-enter all of his information three separate times, until a supervisor finally came to the rescue. I was incredibly impressed with FF's patience and composure that day, because he usually hates waiting and has very little tolerance for repetition.
2. FF also has terrible dysgraphia, so it's difficult for him to sign his name in small spaces. For the ID, he needed to sign his name on one of those electronic keypads, which a) was very small and didn't give him enough room to sign and b) kept timing out because when he does sign his name, FF is very slow and deliberate about it. As it was, the BMV staffer said it really didn't matter, so he only has his first name, not his full signature, on the ID. That concerns me, because I don't know if a first-name only John Hancock will be accepted in the event a store clerk or bank teller needs to check his signature against his ID. 
3. As part of the process of obtaining a first ID or driver's license, the BMV is supposed to also allow you to register to vote and--if you're male and between the ages of 18 and 25--register for Selective Service. Voter registration was easy, but for some reason the BMV's computer system didn't trigger the Selective Service question that would've allowed FF to register. (And, yes, you must still register for Selective Service even if you have a disability.) We even asked the staffer about it. He knew it should have come up on their screens, but he and his supervisor didn't know why it didn't come up, and they couldn't register him manually. Not a big deal--we did it online later that week--but it should have been part of the ID process. 
4. And oh those terrible photos! I'm not blaming this one on the BMV.  In Hoosierland, you are no longer allowed to smile, showing your teeth, when they snap your pic. Unfortunately, FF interpreted the "don't smile" directive to mean "scowl and look angry." It would never occur to him that it was even possible to not smile and look pleasant at the same time. We should have prepared him for that one by doing some mugging in the mirror beforehand.

The ID came in the mail in about a week. Sadly, it shows a menacing FF with a first-name only scrawl. Makes him look far more disabled than he really is. Sigh. But he now has it in his wallet, which he's learning to carry with him whenever he leaves the house, and he's had the chance to use his ID several times over the summer. 

What about an actual driver's license? Ah, now that's another blog for another day.

Transition Boot Camp

It's been a heckuva transition summer. This post should be subtitled What I Did This Summer and Why I Need a Vacation.

Here's the short version (hang on; it's a bumpy ride): 

• The non-graduation
• "I don't have any friends"
• No support for postsecondary education from VR 
• Denied Medicaid 
• Targeted for the Support Services Medicaid Waiver
• Not eligible for the Support Services Waiver
• Pulling the rug out from under my Fundamental Assumptions about benefits, the waiver and services 
• The Rent-a-Friend semi-solution
• Much needed vacation 
• Enrolling at Ivy Tech 
• "Flunking" Ivy Tech's Compass "placement" tests 
• "Passing" the Compass tests 
• Gone fishin' 
• John Hancocking a bazillion forms when you have fine motor challenges
• Red tape--there oughta be a law.
• Starting classes at Ivy Tech
• Zeroing in on the primary objective, a.k.a. "This is not meeting my expectations!"
• Searching for supports
• Leaving work early to play taxi
• Disillusioned, disheartened and discouraged with Indiana benefits
• No peer mentoring for Ivy Tech Welcome Week
• This is a web-based class?
• Dropping a class
• New ruling: a 529 educational savings plan held in a parent's name does not necessarily mean you are denied Medicaid. "You should reapply."
• To jump through hoops or not jump through hoops?  That is the question.

Caught up yet? And this is just for one of our children. I need a swig o' Pepto after just rereading the summer summary.  

Stay tuned. I'll flesh out a few of the details. 

Picking a Single Transition Path

Remember when I recommended the combo approach to transition?  In a previous post (toward the end of this one, if you need to refresh your memory) I noted that we tend to choose multiple paths in life--school, work, volunteering, hobbies, etc.--and I suggested that our children with special needs should have that same choice. Well, easier said than done. 


At our final Transition IEP case conference, I was introduced to a new participant in the process: Reality. Our Indiana Vocational Rehabilitation counselor invited him. He's kind of a downer, actually, but she sent him home with us and I suspect he's here to stay.

It always amazes me how clueless I still am about how transition really works. This despite the fact that I try to read the research, I attend conferences when I can, and I work in an office with transition experts. But I'm still in the dark. For the past two years, I've had a very hard time trying to envision what our son Fickle Fan's life will be like post high school, what supports will be available to him, who will provide them, and what he'll actually be doing with his time all day. FF graduated last week, and I still don't have answers to most of those questions. 


I do know now, though, that FF will need to pick a VR path. A single, either-or path. Employment or postsecondary education. VR will support him in one of those, but not both. I was hoping that FF could take a couple of classes at Ivy Tech and have a part-time job, supported in both by a local disability service provider. That way, FF continues to learn and get exposure to new fields while he also gets needed job experience, where he'll learn job skills and all of the things that come with that, like money management, social awareness, time management, etc. Both avenues accompany opportunities that could lead to permanent employment. And, yes, I know that we'd be beating the odds if that were to happen. 


VR, however, can only put its financial eggs in one basket at a time. FF CAN decide to pursue an associate's degree at Ivy Tech and see how that goes. Then, after a year or so, if that's not working out, he can go back to VR and ask for employment support. At that point VR would then pull the lever and switch the track over to employment services. So, as I understand it, FF isn't completely out of luck if he chooses a path that doesn't immediately work for him. He could reorient himself and try again.


But I'm loathe to limit his options when he's just 18 and still stretching and opening up to life's possibilities. And, given his high-functioning autism, I'm not sure the single focus approach is a good one. Many, many neurotypical teens hold a part-time job while taking classes at a community college. I think that makes sense for FF too. 


So is that our only option? No. FF could choose to attend Ivy Tech with VR support, and he could get a part-time job, but he'd be on his own, without help finding a job, without a job coach, and on the front lines in potentially stressful situations without an advocate or with co-workers who may not understand FF's particular version of autism. It's a little scary. 


We could also take the other route. FF chooses employment with VR support and takes a class or two at Ivy Tech, but again, without support.  We would need to recruit, screen and hire tutors and probably a notetaker/scribe, and we'd need to provide him with transportation. The Ivy Tech in our area provides very little support for students with disabilities. The office of disability services will provide letters that the student can then take to professors to ask for accommodations, but, as in many other universities, the student is expected to advocate for themselves on campus and in the classroom. Self-advocacy is one of those skills that the majority of students on the spectrum lack. Nothing makes my children cringe like the thought of asking a stranger for something they need.  So having him take classes without any support seems like setting him up for failure.  


We're hoping to put a plan in place with VR in the next week or so that would also get him some sort of support for the summer. I'll keep you posted. Meanwhile, Reality says he wants to move in, rent free, and begin calling the shots. Demanding little bugger! Sigh.

Now What? Secondary Transition Resources

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.


Among the links on the "Now What?" card you should really check out: Is College Right for You? Setting Goals and Taking Action, JobTIPS, and the Job Accommodation Network.  There are more; those are just the highlights.


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!

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!

Teen Isolation: Autism Issue or Cultural Characteristic?

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.  

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. 

Introductions Are in Order

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...


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

You don't wanna know...

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.


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