On a Random Tuesday

On a random Tuesday while I was at work, I got a phone call from FF. Bam. There's that gut-wrenching feeling. Now what? Parent T in T readers get this. It's the quaking you experience when you see that the school is calling. It's never good news. 

FF, though, is now 20. The pre-frontal cortex is maturing, doing its thing. He's attending community college classes. And, more importantly, he hasn't had an incident in more than a year and a half. But I know there's always that possibility that something or someone (or he himself) will make him feel belittled and humiliated, that he'll feel boxed in and powerless. So the Mom worries? Still there. 

On this particular random Tuesday, I had dropped him off at his class downtown. On Tuesdays, after class, his peer mentor (PM) picks him up and they go do "guy" things (Buffalo Wild Wings, bowling, video games, walk on campus). The PM and I usually text beforehand, just to verify the pickup. Since this class is downtown and not out at the main campus, you can bet I texted FF after class the first couple of times to be sure pickup went smoothly and they were on their way. But this was 5 weeks into class, so I had faded back and was trusting that all was well.

The call came 30 minutes after class had ended. Uh-oh. But:

FF: Mom?

Me: Yep. Are you okay? Did PM pick you up?

FF: Oh yeah. I'm fine. I'm just calling to let you know PM and I are going to a movie, so we'll be back later. Teenage Mutant Ninja Turtles. Okay?

Me: Yes, that's great. Thanks for letting me know. And have a good time. 

FF: Okay bye. 

Three waves of relief here. 1) He's more than fine. He's having a good time. 2) He called to let me know he'd be late. 3) I don't have to see that movie!

Several days later, I checked with him about the call. "Did PM have you call me to let me know you'd be late? That was thoughtful." And the about-left-me-on-the-floor response: "No, I just wanted to call because I knew we wouldn't get back until later than we usually do." Communication, consideration for someone else's feelings, executive function skills. The trifecta!

On that random Tuesday, as I was driving home from work, I realized my son was at a movie, my daughter was staying on campus for something course-related, and I would be headed out to a meeting. Everyone off doing their own thing. I understand that this happens all the time in "normal" families, but it just doesn't happen in ours. 

I could get into this normal family thing. On any random Tuesday.


 

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. 

Peer Invitation: Voila! Instant Participation

The last post was all suspension and gloom.  So, as promised, the good news...


Fickle Fan actually went to a high school dance.  He came home last week (before the dreaded suspension incident), and pulled out a slip of paper he'd been handed in school.  A couple of kids told him about the dance marathon, a fundraiser for Riley Children's Hospital, and told him he could register online.


The shocker here is that we've been trying to get him to participate in school events, including dances, all year long.  In his last case conference we even asked that extra-curricular social activity and interactions be written in as a goal on his IEP.  It's there (sort of), but the school, unfortunately, hasn't addressed it at all.  And, of course, because we're Parents--and therefore pariahs, never to be respected or trusted in the world of teens--nothing we suggest to FF is a good idea.


So what was different this time? A student (or maybe students, I'm not sure) personally invited him to come. That's so key and something we've been trying to get through to the school for the last four years. FF is far more likely to participate and engage in an activity if a peer (preferably someone he admires) asks him to do something.  Whoever the student was (I wish I could personally thank him/her/them) explained that it was a fundraiser for a good cause, that it would be fun, that he wouldn't need to dress up, and that FF wouldn't even have to dance.  He could just come, hang out and enjoy.


And he did.  I'll admit it was a little nervewracking for us. My husband dropped him off at the school door (and, mind you, this was not HIS school but one across town) and we waited for his call.  And waited. And waited. We knew he wouldn't stay very long--we estimated an hour--but when we didn't hear from him, we started to get a little nervous. My husband's calls to FF's cell phone weren't answered. I knew it was too loud in the gym to hear his phone, so that didn't really bother me.  But after an hour and a half, the can't-stand-it-any-longer Dad went to the school, peeked in to the gym and saw FF off in the distance texting on his phone  


Sure enough, my husband gets a text: "Whts up?" Husband replies: "Just checking to see if you're ready to leave yet." FF's reply: "Not yet." Halleluyah!! He stayed another hour before texting to say he was ready to be picked up. Definitely a happy camper when he came home.  Said he had a great time. Yes!!


Now if only we could have another student personally ask him to participate in graduation.  As of right now, May 25 could be an anti-climactic end to a Herculean effort (ours and his) to get FF's general diploma.  Oh well.  FF may not want to party, but I'm darn tootin' sure taking my husband out somewhere for a toast or two and some mutual "Job well done, Spouse!" pats on the back. 

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.