Monday, August 08, 2011

Just walking around, looking around? (Autism Works)

Autism Works is a post I put at the same time on all my blogs to help people learn about places, people, and things that help special-needs individuals.

A study this week examined "elopement and wandering" in autistic people, which sounds a lot more fun and/or romantic than it is, since "elopement and wandering" is running away, something we actually are quite familiar with, as Mr F is a wanderer.

Mr F has always run away -- from when he was able to walk, he'd take off if you let him. We'd go to the park and one or the other of us had to constantly be taking off after Mr F to bring him back to where he's supposed to be.

Wandering was described in the study as the tendency to bolt, or to simply leave a safe place without being told or allowed to do so. While all kids tend to wander away now and then (I got lost at the State Fair when I was about 5 or 6), kids on the autism spectrum do so at a rate of 4-8 times their unaffected peers:

What makes wandering so problematic is that in the case of kids like Mr F and many others with autism, they have only limited communications skills -- so when found, they can't tell people who they are or where they're from. Add to that the fact that many autistic kids don't appreciate fear the way other people do -- neither Mr F nor Mr Bunches are particularly afraid of traffic, for example -- and you've got a recipe for disaster -- like the 4-year-old autistic boy whose body was found in a pond.

There's a program called Project Lifesaver International that can help with this. Project Lifesaver, working with local law enforcement agencies, fits a bracelet on the child's ankle or wrist. That bracelet has a tracking unit in it that can be quickly located if the child wanders away, providing some peace of mind for the parents. It's not a replacement for precuations -- we've got all our windows locked securely shut, and put extra locks up out of reach on doors that lead to the outside -- but it's a nice backup.

Each day, the parents have to check the battery in the bracelet to make sure it's working (there's a little tester) and record the results. The bracelet is removable, but it's tough to do and eventually the kids seem to get used to it. (Mr F got it off just once, and hasn't really tried since then.) It's also fairly unobtrusive; Mr F's is on his ankle, and sometimes kids notice it, but mostly they don't seem to see it. (He's wearing one in that picture above. Obviously, it's more hidden during pants season.)

I wasn't able to find much information about charges. Around us (Dane County, Wisconsin) we haven't been asked to pay anything; the local PD administers the program. The website says that Project Lifesaver has no agency membership fees. It may be that other local law enforcement agencies charge fees; I don't know. If your local law enforcement agency isn't enrolled in Project Lifesaver, they can get information here to sign up.

And now for something a little more fun:

That's Mr F, enjoying his "therapy swing." The swing-as-therapy was something that the occupational therapists the twins go to used quite a bit; their "therapy" rooms looked a lot like playgrounds. The boys used to go to OT every Tuesday before the insurance coverage lapsed and we had to stop for the year (that's why single-payer health care is so important: nobody should be forced to choose between groceries and necessary health care) and Mr F was making great strides there, so we purchased our own swing for use in our house.

"Therapy swings" are available at a variety of locations -- but be careful and shop around. There's what I think of as a gray market for autistic-friendly products out there: things that autistic kids use that are higher-priced simply because the word "autism" is slapped around their website.

The swing we have looks a lot like a regular hammock -- it's mostly netting with a bunch of strong cords and silver rings. It beats a lot of other swings because not only can the kids swing in it, but also they can spin or just sit.

We got ours for $99.95 at Sensory Edge, and didn't bother getting the almost-as-expensive hangers. Instead, we went to the hardware store and got two lengths of rubber-covered chain and some sturdy hook-and-eye loops. My brother-in-law drilled two holes into the support beam, and we had a swing that hung up just fine.

Mr F spends about 70% of his time on the swing -- and it works for him by settling him down and letting him focus. Since installing the swing, he's learned to count to 12, and can say his ABCs with help. Plus, it helps him relax when others are around, so if relatives come to visit, Mr F's more likely to remain in the room.


Update: I reviewed My Autism Team last time around, and have continued to check in there from time to time. Mary Ray, from that site, emailed me to say this:

Thanks so much for checking out MyAutismTeam. I just read your post about the site. Thank you very much for checking out the site. Besides adding providers/organizations/sports leagues that may not yet be in our database, parents can review those providers. Right now we have over 1200 parents on the site nationwide (in just a few weeks since launch) and 30,000 providers/businesses in our database. Our goal is to get 100,000 parents using the free site by next year. Definitely the more parents participate and contribute the more valuable the information exchange.

Not sure if you knew this, but you can actually write a review about a business. If you go to a business's profile page, click "review."

We have the All Updates stream, where parents can connect with each other. Soon, we'll refine our search in the Browse Parents tab so it's easier to find local parents near you in case you want to exchange inside tips about coverage, businesses that wouldn't normally be thought of as autism-friendly, and more.

I hope you are able to continue using the site and providing us feedback. We rely on parents feedback and our partner relationships with Autism Speaks and Easter Seals to be a value contributor to the community. We have more features to come and announce them on our blog/facebook/twitter.

As part of this post, I attempted to add the "Project Lifesaver" business to the site, but was unable to do so; three times, when I clicked to enter, it told me to fix errors on the page without telling me what errors were occurring. There were blank spots on the page that I didn't have information to enter (such as a name associated with the business.)

But, I also used My Autism Team to post that people should provide links to information and businesses, and Eric, from San Francisco, suggested The Thinking Person's Guide To Autism, which says about its mission that:

The Thinking Person's Guide to Autism (the website and the book) exists to help people with autism and their families make sense of the bewildering array of available autism treatments and options, and determine which are worth their time, money, and energy. We also want to encourage respectful attitudes towards autistics and people with autism.

The Thinking Person's Guide to Autism (TPGA) is the book and website we wish had been available when our loved ones with autism were first diagnosed.

Autism misinformation clouds and is perpetuated by the Internet. We want to make accurate information about autism causation and therapies visible, accessible, and centralized.

I've now bookmarked that site and will include it in my future reviews and information; I don't know yet anything else about it.

Got information that would be helpful to parents of special-needs kids? Know a business that is special-needs friendly, or someone with special needs doing something interesting? Email me with the words "autism works" in the subject line

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