Occupational Course of Study

Food Barn pin from first paycheck job. / c. 1989

Food Barn pin from first paycheck job. / c. 1989 – Nate Hofer

As part of The Boy’s course of study, he must complete 225 hours of competitive employment outside of the school day, which means he has to get some kind of job. The letter from the coordinator basically said to ask friends who owned businesses or worked for one to find a position for him.

At first, I thought he could volunteer with the dog rescue that I’m affiliated with. We went to help socialize some kittens one day, and the urine smell was too much for him. He wandered around, not helping, and it was kind of a disaster.

Since I don’t have too many friends here, and the ones I do have are not in a position to hire The Boy, I’ve been trying to wrap my brain around just how he will get this graduation requirement completed in the next two years.

I met with a woman from Vocational Rehabilitation, a state agency that helps the less-employable with finding a job, training, job coaching, and in The Boy’s case, transitioning from a school-sponsored work assignment to the real world upon graduation. I asked her if we could get help finding a job for this requirement, and she had no idea what I was talking about. (Really?…)

Next, I emailed the district coordinator with my concerns: Finding a job that would allow him to work 10-15 hours a month, with someone who has an inkling about autism (keeping in mind that it took me 5 MONTHS to find a job when I moved here), and there was no job coaching or anything available.

Her response was fairly glib, and included an offer for him to do volunteer hours if I was “uncomfortable with him working in the community.” She also admonished me to not be “afraid to allow him to keep moving forward vocationally.”

(Excuse me while I go punch something)

Afraid? I asked for help identifying businesses and owners who may have worked with kids in the program before, and I got passive aggression and vague suggestions of libraries, dry cleaners, potato farms, and movie theaters.

Kids become adults. Kids become adults. Kids become adults. Kids become adults.

Kids become adults. And the fight continues.

Advertisements

Summer Camp?

Our state and local chapters of the Autism Society held a meeting last night regarding all of the new and wonderful programming they are bringing to our area, focusing primarily on their summer day camp at a new-to-us facility that has been remodeled and improved. I was excited to get the information, find out about registration and see how much it would cost. While The Boy has enjoyed the summer program he has attended the past few years, it wasn’t quite what he needed, although something was better than nothing. And if the school district claims he doesn’t qualify for ESY, it was our only alternative.

This new program will be for six weeks (six weeks!), Monday through Friday (all week!), from 9am to 5pm (amazing!). And it will be free… Wait, what?

And there are only 30 slots.

Wait, what?

They went on to explain that first priority would be given to kids who do not receive any state services (pretty much everyone I know because you have to sacrifice your first born to get any kind of services around here), and to those who can attend the whole 6 weeks. OK, and do you not realize you are going to have hundreds of kids who fit that description? How will you decide among them?

Then they said it was open to kids with all diagnoses, and even siblings if there was room. And then they said it would be open to anyone in the area, not just people in our county…

A little bit of market research would have been appropriate here. I can’t believe they think that so few would be interested in this. I guess I’ll be up at Midnight on May 1, hoping the site doesn’t crash and trying to get registered before everyone else in the tri-county area…

hanging out

 

IEP Day

We’ve already had our IEP for the year (up north), but things have been going so poorly at The Boy’s new school that I called a meeting, and it’s today.  Luckily, I know the outcomes I want, and I know how to stand my ground.  I know enough about special education law, and I know a lot about my son.  I also know a lot about good teaching, regardless of the students in the chairs.  I’m not going to slander anyone, but I really hope for some changes to be made.  I’ll go as far as I can go, but I am prepared with contingency plans, as well.  I’ve spoken to an advocate, and I have documentation to support our cause.  We also have resources available to us, and I’m ready.

Let’s do this.

What I’m Up To

  • I have an “orientation” at Michael’s (the craft store) tomorrow to become an official employee, so I can start teaching scrapbooking classes.  The pay isn’t as good as I anticipated, but I hope it will supplement my other part-time job…
  • tutoring!  So far, I kinda sorta have one student (his mom and I have a game plan, but not a schedule yet), and he has autism – yay!  Suffice it to say I could make up to $30 a week all told!!  I know, exciting, right?  But in about three weeks, once I can get my classes set up and advertised, and parents start to realize their kids need help, I should get some more hours at Michael’s, and I should get some more tutoring students.  And it might be enough to make my car payment…
  • I’m waiting to hear back from the county about whether or not we qualify for The Boy to be on the state-provided health insurance program.  Any day now…  Nah.  More like 30 days from now…  Hopefully.
  • I’m going to be volunteering and helping The Boy’s band director out a couple of days a week.  I also told him I could come in when he has a substitute.  He thought I might want to be the substitute, and I assured him I did not.  If I’m a volunteer, I can get away with a lot more…  Heh, heh, heh…
  • I’m trying to work with The Boy’s school to get his services ironed out.  They are NOT right, and I think they have had very limited experience with kids with autism.  More on that in another post, but suffice it to say that right now, I’m reading some books from Wrightslaw about Special Education LawJust in case.
  • I’m helping my hubby with some of his big projects.  We joke that I don’t get paid, but when he makes money, I make money, and this allows him to get done quicker, which means more work, which means more money…  you get the picture.  Plus I get to spend the day with him, which is nice about 99% of the time 😉
  • I get to drop off and pick up my kid right from school – no daycare!  I’ve never been able to do this, and it’s pretty cool.

So in summation, I don’t have a ton of money coming in, and my insurance runs out this week.  But for the first time in about 17 years, I’m able to give thought and energy to my own kid and my own family, and I have the time to do it, and do it well.

at the docks

Don’t Knock Awareness

autism awareness ribbon

I keep seeing facebook and blog posts, and tweets stating that awareness is just not enough.

Of course awareness is not enough. Acceptance would be lovely, access to therapies, respite care and services would be grand, assurances that my child will be cared for after I am gone would be divine.  And of course, those of us who have the energy will continue our fight for these basic needs (and yes, they are basic needs, as any family touched by autism can attest).

But, we can’t do it alone.  We need armies of people to help us demand that these basic needs be met.  And we don’t have armies, yet.  We can’t even get our own rag-tag assemblage to march under the same banner — we can’t even decide what our banner should say!

So I say we continue with awareness, and not just some event with a puzzle piece on a poster that says “Autism Awareness Night”.  Puzzle pieces, posters, literature, and every autism family in a 50 mile radius in attendance, so those NT attendees can glimpse the spectrum in all its glory: the sweet smiles, the small victories, the hand-flapping, the meltdowns — all of it.  We cannot rely on large national nonprofits to do the work for us.  We have to get our kids out there.  We have to make our presence the norm.  We have to be unapologetic.  We have to use every teachable moment.

Doing all of that creates awareness.  And awareness is where armies are born.