Kangaroo!!

Kinesiology Exercise Programs for Parent and Child

When James was younger, we were lucky to participate in some great programs at Sonoma State University (SSU): the CATS program, Saturday Sidekicks, and Cycle Without Limits. 

Now the Kinesiology folks, who created the Saturday Sidekicks program, have a couple of new programs: Family Fun Run and At Home Exercises.

Neither James or I are up for running at this point, but paired exercises at home sounded great. I answered the email and we signed up. 

As this is a study in progress, I am going to keep it simple - we did some basic tests at the beginning for basic medical information and (for me) dexterity and mobility exercises. Now, each day at home, James and I together perform a practice and then coordinated exercise at home and take a photo at the end. The exercises are introduced by a video and a video game concept. 

Today's theme: Kangaroos!

Not gonna lie, it was fun. Stay tuned.

When Time Is An Illusion

 "After Work", Doubly So

It's 7:00 PM. A full day of school for James, work for me. Then we had a home ABA session for 3 hours (yay!). After this I scarfed down dinner and hopped on to Zoom. I cannot diss Zoom. It's changed the game for me. I can now attend meetings I had to miss before (no time to drive or respite for James), doctor appointments (for my family, without using all my hard-earned PTO - recently, I can start scheduling care for ME), Tonight it's a presentation on IEPs. 

That's right. The lady with 14 years of IEP experience is watching an online presentation on the thing that is the partial cause of silvering tresses and sleepless nights. Because, hey - it's not like I was able to do this before. Who knows? I could learn something.

We are 15 minutes in and already bad flashbacks to 3 years ago But hey, then I feel better that my responses were warranted and that, eventually, James' legal right to access services were upheld. 

This is a very good program. There are parents and professionals online from all over the Bay Area and as far away as Fresno! I am so glad these are happening - I wish I had been able to attend a session like this when I was just starting out (although several teachers and administrators were very helpful).

Big shout out to the language - from the alphabet soup of acronyms to understanding nuances between "appropriate" and "best".  Great job discussing functional needs and related services. "Least restrictive environment" - always a goodie. Transitional IEPs - just when you think you've got it, a twist. 

And I did learn new things - ESY (extended school year) is any time outside of regular, scheduled school hours (in other words, it's not just summer school/session - it can cover weekends, breaks, or after school, if the district has resources for that). And schools have 10 days to come up with a response to continue services within 10 days of an emergency condition (of which we've had several over the past few years).

If you want more information, I highly recommend contacting the agencies who coordinated and put on this event:         

         

It's close to 8:30 and is my day over? Not really. I am James' caregiver, and he is testing the doors when he should be doing his bedtime routine. I will remain on duty until he's safely in bed. And then sleep light.

Bath Wars No Mores

Again I am chilling out in an armchair as James takes a shower and rinses his hair. Start to finish this takes about 2 hours. Thank goodness for well water and a "mute" button on the shower head! Though time-consuming, this is a vast improvement from before.

Before started as a fight and meltdowns, and not a lot of washing. Improvement was a 10-minute to hour-long march by centimeters down the hallway to the shower, 20 minutes to make sure clothes were off and he made it into the shower,  and a lot of shouty meltdowns on both our parts for another 40 minutes to make sure the water actually made its way to James and that some cleaning took place (followed by 30 minutes later on to get him to the sink for the hair washing portion in the kitchen). This has now morphed into a largely James-driven bathing experience. What made the difference? a bench. 

He does not use it, but somehow having it there for the bottles (which used to be in a holder on the wall) and knowing he can sit on it has made all the difference. Whatever works, brother - whatever works! I am very proud of him and his progress.

Fri. Yay. Go!

 It's taken six months to fine tune, but James and I now have a morning routine that supports him and his hygiene goals. Also our collective sanity.

After several trials, I found this is our winning schedule:

• 7:00 - First wake-up check
• 7:10 - Second wake-up, with lights (if needed) and hygiene kit and clean clothes
• Check, clean and trim all digits
• Fresh clothes
• Wipes
• Pleasant, calm conversation
• 7:25 - Out in the breakfast area, eating set out meal
• Can check phone for text messages
• Take meds
• Put on shoes and jacket
• I prep his bag lunch and we prep his backpack with mask, water, & homework as needed
• 7:50 - Ready for school van pickup

Needless to say, it rarely goes like clockwork. That's not the goal. The goal is a routine to chart our morning course for a good start to the day. There is Wiggle Room built in, because: life, teens, autism.

When the morning routine hits all its beats on time (like this morning) I feel like bursting out into song.

On the Cusp

 We are 100 days into James' first full year of in-classroom high school. He's a junior. Let that sink in.

Life has been out of the ordinary for so long that it comes as a shock to come up for air and realize that I am behind getting legally and strategically prepared for getting James ready for his adult phase. I am working on that. 

Everything I have read and heard indicate in a very few years, this is when he drops off a cliff for services, etc. 

So much to do. Still a little time to get it done.

Wish me luck.

Parent's Worst Fear

 Watching your child self destruct. In spite of how hard you try. And everything you do. 

Perspective, The Importance Of

Perspective. 

Autism has a way of expanding horizons and showing us there are multiple ways of looking at things.

There are multiple ways of communicating. 

There are multiple ways of being, experiencing joy, love, and contentment.

It helps me to keep this in mind, when I get frustrated with managing a life that includes Autism.

Here's to changing the world, one thought at a time.