Saturday, June 20, 2015

Taking the kids out, without mom...

For the Saturday before Father's Day, I got to take Mikan, Anica, Drexler, cousin Arielle and Grandma Gensic out for the day.  First, we went to try to buy Geiger counters through craigslist from a guy in Kalamazoo, but none of them worked, so we didn't buy any of them. Then we went to the Kalamazoo Valley Museum.  I highly recommend the Kalamazoo Valley Museum.  It is a little over an hour drive from South Bend, but my kids can spend 5 hours, including a 45 minute $3 per person planetarium show.  General admission is free.  They have highly interactive exhibits (history, science, etc.) that my children engage very well with.  I usually leave Jenna behind to give everyone much needed time away from each other.

After dropping off Arielle and Grandma with Annette, I took my kids to Bonneyville Mill.  This is an Elkhart County Park, with free admission, nature trails, a wade-able sand bottom stream and an operational mill.  Most Saturday afternoons there is a party going on in the pavilion that Anica and Mikan try to get us invited to, so that we can eat their food.  The best part of the park is the mill pond rocky dam that the kids wade up to and crawl up.  Then Anica likes to sit "Mermaid Style" on the top of the waterfall.  Mikan did the same thing and his non-existent booty cheeks couldn't hold up his pants.  Also, Mikan had to go potty while we were wading in the river.  It is here that he learn that going potty (#1) in a body of water shouldn't include pulling your pants down.  I thought this would be innate behavior, apparently it is not.  I wonder if that is a manifestation of autism. :) My children are the only people I ever see wearing swimsuits at this park.

My children love Kalamazoo Valley Museum and Bonneyville Mill.  They ask to go there frequently.  I love going to these places. Both are free will not be as entertaining for my kids when they are adolescents.

On a final note...Drexler and Anica are running a fever while Mikan was hungry right before going to church.  I gave Mikan a spoonful of creamy peanut butter to appease the hunger without Pringles.  Mikan then shared with Drexler some of the peanut butter by sticking the same spoon in Drexler's mouth.  I was happy Mikan shared on his own, Jenna was mad about spreading germs, and I was excited about spreading germs where I simply said "hygiene hypothesis."  Anybody else have arguments with their spouses about the "hygiene hypothesis?"

Tuesday, June 9, 2015

Learn from Autistics

We've been lazy about updating this blog, mostly because we've been busy with a variety of professional endeavors. I'll offer a brief update on Mikan before I explain my new project.

Mikan is still using solid AFOs. He hasn't made very significant progress for a while and he is developing more tone as he grows. His neurologist and physiatrist are considering a medication called Baclofen to relax his tone and hopefully improve his balance. I'm not sold on this medication just yet since it doesn't really address his main problem (balance) and will weaken all of his muscles and not target the ones is having issues with. We visit with both doctors again this summer to reassess his development.

He just finished first grade and is doing wonderfully in school. Academically he remains on target or ahead of most of his peers.

On a different note, I recently was offered a publishing contract for a book I wrote based on interviews of twelve autistic adults! It is a guidebook for parents and caregivers of children on the autism spectrum based on advice from autistic individuals and their specific experiences growing up. The book will most likely be published early next year, and, as a result, I've been working on developing a website to help promote it. I plan to regularly maintain the website with regular articles and blog posts about a variety of topics of interest to the autism community. The goal of this website will be to constantly engage with autistics and connect parents with autistic voices.

Please check out and share it with anyone who may be interested. Thanks!

Thursday, September 18, 2014

Gross Motor Update

Mikan's most recent physiatry trip was a little disappointing.  The physiatrist can't figure out a way to stop him from dragging his toes when he walks.  She didn't mention wanting to back off on any of his bracing, only try new adjustments and therapies.  Mikan doesn't appear to have any foot or leg issues that are causing him problems, it is his ataxia that is the root of everything.  Ataxia is a condition that affects the part of his brain that controls balance and coordination.  Because of his ataxia, his movements are varied and unpredictable.  His bracing is supposed to support his walking while also preventing bone deformities that might need surgical correction.

The physiatrist reminded us that as he grows, each issue becomes harder to correct because we will be trying to control a bigger, stronger body.  She said that we shouldn't rule out the possibility of surgery down the road and that he may need to practice using a walker in public for safety reasons.  He already uses his walker at school during some transitions.

So after she tried a variety of different contraptions in his shoes and on his legs, she decided to recommend experimenting with ESTIM (electrical muscle stimulation) during his PT sessions.  She isn't too confident that this will help; she said her treatments are all just trial and error right now for him since he isn't responding very predictably.  It seems like just six months ago we were talking about downgrading to SMOs and now we are discussing walkers and surgeries.  We follow up in three months to discuss the EMS therapy and whether or not he tolerates it.

A video of a recent "fight" Mikan and Anica had over where they wanted to travel to: