Hired!

This past Monday, son Fickle Fan put on his new khakis, his two-toned blue polo shirt, and his size 16 Sketchers, and headed off to work. Yes, work! Employment, labor, a job, the daily grind. The place from whence the bacon comes. 

With the help of his employment consultant at Stone Belt, FF interviewed at Hobby Lobby two weeks ago and landed a part-time position in the stock room. A week ago Thursday he attended a training session and signed all the necessary paperwork, and last week he worked a 4 hour and a 6 1/2 hour shift. He was one tired, but happy hombre.

The Pilgrims and Powhatans may have started the giving thanks tradition, but let me tell you, they got nothin' on us. Just days before Thanksgiving, we are so grateful to:

• Stone Belt, for its continued support;
• his Stone Belt employment consultant, Delyn, for slogging through all of the online applications,for knowing who to call, and for taking the time to get to know FF;
• Indiana Vocational Rehabilitation, for making it possible for FF to work with Stone Belt;
• Hobby Lobby, for being the kind of company willing to take a chance;
• to Hobby Lobby's managers, for saying yes to Delyn, and for starting slowly and not throwing him to the wolves on Black Friday;
• to Bloomington Transit for putting a bus stop right in front of Hobby Lobby (we're still practicing bus riding);
• and to FF--for stepping up and making it happen.  

FF's days at Hobby Lobby will be spent unpacking boxes and stocking shelves. Initially, he'll be supported by Delyn, acting as his job coach, who will back him up as he learns new skills and know when to back away as he learns to stand on his own two feet. (Great little animated video here, by the way, on how job coaching works in supported employment.)

Why would Hobby Lobby want to take a chance, giving a first job to an 18-year-old with high functioning autism who is somewhat awkward (but eager), has some pretty limiting fine motor skills, and who gives away the ending to Skyfall to a co-worker on his first day on the job? Sure there's always the altruistic "It's the right thing to do" response, but I think there's probably a more multifaceted answer to that question. First, this probably isn't the first time Hobby Lobby has hired a person with disabilities and they've probably learned a few things along the way.  

• In general people with disabilities make pretty good employees, in that they're dependable, loyal, and productive. 
• There are a number of incentives available to companies who hire employees with disabilities, including tax credits and training programs.
• Hiring an entry level employee referred from VR or a local employment consultant means the company didn't have to spend as much money recruiting applicants for that position.
• The disability community is large when you add family members and friends, which means by hiring someone with a disability, you may have  just broadened your customer base. (Feel the need to go shopping?  Hobby Lobby has 525 stores in 42 states--or just click here. And, no, they're not paying me to put in the promo!)
• Employees with disabilities can be supported by job coaches and an agency of people with expertise in training, accommodating, communicating with and successfully including people with disabilities. In other words, FF comes backed up by a pretty deep bench. 

He also comes with a couple of skills of his own that could help Hobby Lobby. Need something off a top shelf? He's 6'5" and has quite the wingspan. Can't remember what item goes where?  Give him a few months and get him interested, and chances are FF will be able to recite stock numbers and shelf locations with ease. He's got one of those memories. 

I'm sure there are things that we'll have to work through. Rest assured, the Mom Alert System is not switched off; it remains at DEFCON Yellow. But for now I'll hold down the worries about the social stuff, how easily he could annoy a co-worker, his low tolerance for frustration, how quickly he becomes bored of mundane tasks. For now, I'll do the Scarlett O'Hara and think about those things tomorrow, because today I'm smiling and doing the happy dance.

He. Has. A. Job! 

Taking a New Look at Medications in the Transition Years

What a difference a med makes--even in transition.

DD holding the information insert to one of
FF's medications.

Okay, let's stop right there for a moment. I know there's a group of fellow autism parents out there who are ready to pounce on me. "Any or even all medications are bad business." "People with autism shouldn't be on medications." "You're torturing your child with dangerous chemicals." Yep.  Been there--when our son was 6 years old. 

The real fact, though, is that autism is a pervasive, chronic medical condition--it affects aspects of his whole being (physical, mental, sensory and social) and it's not curable (though we keep hoping). You wouldn't pull meds away from a person with diabetes or asthma or schizophrenia. More facts: Without meds, FF would never have made the progress he's made. He would have been confined to a "self-contained" classroom, could have been sent to a school outside our district for students with serious behavior disorders, and would probably have spent even more time in restraint than he already did. 

As all autism parents know, finding the right meds or right combination of meds to address the frustrating, battle zone, and water torture symptoms isn't always easy. Takes a lot of time (and co-pays). Watching a promising med erupt into side-effects that only intensify the anxiety, agitation, distractability, irritation, ticing and aggression is disheartening. Putting a whole family through that process is exhausting and sometimes frightening. 

But when your doctor finally finds the right med or combination, it's a gift. FF's doors and windows opened to the world and where there was darkness we finally saw light. Really. It was that powerful.  

So why is this a transition issue?  Med tweaking--officially known as medication management--is the ongoing process of monitoring medications and their dosages. Doctors work with parents on this throughout a child's life, but I think it may especially be an issue post puberty and during the transition years. 

That doesn't mean I'm suggesting that kids in transition should add new drugs or increase the dosage of their existing meds. I am NOT a doctor. I'm just saying there are multiple factors--physical and environmental--that may influence a young adult's successful functioning in transition. An increase in height and weight, for instance, that may affect drug efficacy. Changing hormones. Extreme stress due to any number of causes. It's all something parents and physicians need to keep an eye on--especially since so many of our young adults on the spectrum can get side-swiped and become completely derailed by depression.

Both of my children have required either a complete med change or a dosage change post high school.  

Two weeks ago I was at my hit-the-wall stage. FF's complaining, irritation, intolerance for the slow pace of positive change in his life, and his tendency to blame me for everything--school, few supports, lack of friends, no transportation, Republicans (oh, you have no idea!), and constant boredom--had left me verbally battered. We've frequently described FF as verbally viscious and me as his verbal punching bag. That tendency has waxed and waned through the years, but since this past spring it's just escalated. 

His psychiatrist was hesitant this summer to do anything about it, chalking it up to transition anxiety and frustration. I completely agreed; I really dislike increasing his medication and prefer to ride out a storm or make needed life changes to avoid triggers or address issues. But by fall I was shell shocked.  

Last week we increased his anti-anxiety med, and we're now all breathing easier. Most importantly, so is FF. He's SO much more affable, conversational and just darn likable. It's always after we see the clouds part, though, that I ask myself why we waited so long. In fact, I wonder if we had done this in February, if FF would've been more likely to participate in things like prom and graduation. Sigh.  

Beyond med management, of course, there's another transition issue here: self-management of medications and health care in general, especially for young adults with disabilities who are higher functioning. There are a lot of challenges and independent living skills involved there. And although both our children are at the higher end of the spectrum, they're very different, so helping them learn has been two separate projects. I'll tackle the health care/medication management self-care subject in another post.  

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!??