This time around:
-- Project Lifesaver may be having problems,
-- the Autism Society of Greater Madison golfs,
-- college for people on the spectrum,
-- and a review of a semi-autism-friendly business,
but first this:
That's from "Lou's Land," and I had to stop watching it halfway through and then watch it in pieces because it hit home, especially the part about "discovering a new normal." I won't take away from Lou's story by telling my own here; I'll just say that I understand exactly what he means and I've bookmarked his blog. You should, too. You can't help someone unless you try to understand what they've going through, and blogs like Lou's can assist you in knowing what it's like to live with autism.
On to happier, more hopeful things, like college for autistic people. The Autism Speaks official blog has a post on helping students on the spectrum achieve in college, pointing out something that I didn't know -- Section 504 of the Rehabilitation Act requires that colleges make reasonable accommodations to people with learning disabilities, including (but not limited t0) autism spectrum disorders. The protections and services aren't as aggressive as those for kids in high school and lower (provided under the Individuals with Disabilities Education Act [IDEA]) but they're there and may help kids on the spectrum get into and through college. Autism Speaks has some pointers and links for more information, but the school counselors can provide information, as well.
Update on Project Lifesaver: On August 7, I mentioned elopement and wandering and recommended "Project Lifesaver," a program that fits wanderers with GPS-enabled bracelets.
On August 16, we got a letter from the Dane County Sheriff's Office that raised concerns about this program. The letter says the office "has been experiencing significant equipment failures with many of our Project Lifesaver clients" including the "lack of any transmitted signal," which, of course is the whole point of the bracelet. The letter concluded that:
The Dane County Sheriff's Office will try to find a substitute program; if you have a friend or relative on Project Lifesaver, please pass this on to him or her, and don't trust the equipment. (We haven't; Mr F still doesn't get to go outside alone and we keep all our windows and doors double-locked.)
Without reliable and operating equipment in addition to the lack of support from Project Lifesaver International, the program does not meet the standards of the Dane County Sheriff's Office... the Dane County Sheriff's Office will not longer implement the program.
Business Review: We took our kids to get their annual photos -- Sweetie starts planning her Christmas cards around June, and the annual Christmas card photo is usually taken in August. We don't go anywhere fancy -- just to the Sears Photo Studio at the West Towne Mall in Madison, Wisconsin, and they're generally pretty good there.
It's hard to get some kids on the spectrum to sit still for anything, let alone pictures taken by a strange person. When we took the twins for haircuts last spring, for a week before their teachers played "hair cut" with them, telling them social stories about getting hair cut (social stories are stories designed to teach autistic kids social skills) and pretending to cut their hair, and it worked great; the boys sat still during their hair cuts and Mr Bunches actually enjoyed it. (Mr F still cried, but quietly and sitting, instead of hollering and trying to escape like he used to.)
We tried the same thing with pictures -- for two weeks before, each therapy session ended with the therapists posing the boys and taking their picture with our camera, just like a photo studio, and those sessions went well. The actual day of the photos, we had a bit more trouble.
We arrived about 10 minutes early, and had to wait about 15 minutes later than our appointment, which was problematic. While no business can entirely control their schedule, waiting with autistic kids is trouble, because we'd taken the time to have the boys tired out a bit by playing (another strategy the therapists had recommended), but that doesn't work so well if they then rest up.
Mr F was also upset because -- something you never think about until you're with an autistic kid -- we'd walked through the store to get to the studio, and the store was full of clothing hangers, which Mr F likes. I try to discourage him from simply taking a hanger as we walk through the store, so by the time we reached the pictures, he was disgruntled and getting upset.
(The worker didn't mind that we then borrowed a hanger from a nearby department, which helped calm him down.)
Once we actually got the pictures going, the photographer was great -- she followed our instructions on what order to take the pictures in (get the little ones done first) and followed our instructions to just start snapping pictures, not worrying about whether kids were sitting correctly or facing the camera or smiling.
About 10 minutes of photos later, we had some of the best ones yet. So other than making us wait (even though we'd reminded the woman when we made the appointment that the boys were autistic) the trip went reasonably well.
Golf Outing: If you follow me on Twitter, you know that I began volunteering with the Autism Society of Greater Madison (ASGM) last night; my first volunteer effort was helping out at their annual golf outing, "Golf FORE Autism" at the George Vitense Golfland:
I was there from 6-8:30 p.m., helping people navigate the mini-golf course and then helping move tables around. Several area businesses including NBC 15 sent teams out to play in the par-3 midnight golf outing, and while I had to leave before the night was over, it seemed like everyone was having a great time.
ASGM is the oldest autism chapter in the country, and chaired by David George of NBC 15; if you are interested in the many events they sponsor or are looking for help beginning to navigate the world of autism, go to their site.
Autism Works is an across-all-my-blogs post that attempts to spread information about resources, businesses, apps, and other things of interest to people who have autism or have a relative who is autistic. If you have information to share, leave a comment or Email me ; please put "autism works" in the subject line.
1 comment:
Thank you so much for your kind words, and sharing your reaction.
You are not "hijacking" my story. It is our story. That is one of the epiphanies I had while making the video.
We are in this together and as more and more come out of solitude and join the fight, we will get the justice that our children deserve.
Lou Melgarejo
Lou's Land
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