The Power of Pizza

 Picky Eating, Pizza to the Rescue

James and his sister were picky eaters as kids. Both of them eschew sauces, condiments, and mixing of anything except milk with ice cream - with super powers that always detected instantly any added powders or pureed vegetables. James went through a period of refusing to eat. 

For many years, he enjoyed a fairly stable palate of pancakes, blueberry muffins, or waffles for breakfast. Lunch was typically a peanut butter and jelly sandwich on whole wheat bread. Dinner: chicken nuggets, with apple slices and fries. He ate simple animal cookies and yogurt squeeze-ups for snacks. Occasionally I could get him to eat a banana or pizza. He drank water, milk, and apple juice. There were occasions where we got him to nibble on a carrot or broccoli. 

The life changed, and kept changing ... and not in a good way. By the time we entered lockdown, James was down to cinnamon bread and milk for breakfast and pizza for everything else. He still drank milk and water, and a little apple juice. Then he got picky about pizza - luckily preferring items with low sodium, seasonings, and processing.

In less than 4 years he grew a good 7 inches. Thank goodness for pizza. I was able to get him back to eating blueberry waffles and croissants. He developed a taste for garlic cheese bread. We are working on adding quesadillas with whole wheat, carb-savvy tortillas, pear slices, and some peanut butter on whole wheat bread or apples.

Despite good intentions, often I am exhausted at the end of the day. It is good to have a somewhat healthy option that I know will work. Fast, packable for lunches and trips, and easily found - pizza is our dietary go-to. 

It's the Little Things, Again

James had a great day yesterday - he made the van pickup, had a great day at school, and (after initial resistance) had a great ABA session. We took a victory trip for chocolate chip cookies and Little Caesar's pizza. He had his down time. He was a good sport and powered through the group Kinesiology exercise activity, even though it was a physical challenge for him (walking on all fours - at over 6 feet and in our cramped house - yeah, this was tough).  

The only downside - he did not want to go to sleep. I finally pulled the plug on the internet shortly before midnight. Even then, he kept popping out of his room to the bathroom and back for another 10-15 minutes. After a night of my sleeping in the living room (to keep an eye out for any residual behaviours), it was time to get up. 

James did a good job getting up and following along with our morning routine. What helped was communicating over walkie talkies that he won at school for earning points and ... being allowed to discover how the frother worked. 

Oh my, that smile! He was really tickled to try it out. I think I see a lot more frothed morning coffee in my future.

ABA - Why It's Needed

I am taking a break from paperwork and spring cleaning in my bedroom den, sitting in my armchair and listening to James and his behaviour interventionist (BI) make a schedule for their time this afternoon and following through. It's a deceptively easy blend of hygiene tasks, games, and breaks. 

I love it best when I hear them playing a game, because James wants to be socializing with others and this is a great, gentle way to give him practice for that. 

Over the past couple of years, James has stopped wanting to sing, play card or board games, or read together with me. It's hard to get him to watch TV with me. Most of our bonding time is in cars or taking public transportation (trains and metro transit for fun). I get it. He needs his own friends, his own people.

What is ABA?

Applied Behavioual Analysis (ABA) helps us both by reinforcing the importance of hygiene, game playing, and socializing. Communicating and planning (intention) are worked on as well. 

Why I think ABA Works for Us

Behaviours
I see ABA as important because for someone like James, who has communication challenges, is smart, and prefers to avoid activities not of his choosing ... behaviours have become his communication when words fail. Eloping, swearing, or inappropriate scripting ... ripping paper, destroying his DVDs and old CD ROMs, throwing things out his window. 

When James is stressed, he exhibits more behaviours. After COVID-19 quarantine started, we had spitting on the floor, paper in the mouth, wall hitting, head banging, and yelling - capped off with intense 2-hour meltdowns in which I was on high alert to keep James in the house, safe, and offered calm encouragement to breathe. He shut down on hygiene and participating in remote learning. He grew inches and entered puberty with a vengeance. He regressed on top of his previous regression. He started to exhibit extreme OCD and was almost impossible to transition anywhere in the house, let alone to the car or to an appointment at an office.

In-Home Support
Having ABA in the home (as soon as it became available) was a real life saver. The BI could be with James for remote learning, support hygiene, offer a safe and social connection. What a relief to have a team to break up the monotony of Just Mom. It also allowed me to keep working from home. I bought an air purifier and lots of antibacterial wipes. The ABA team all wore face masks.

Understanding Why and Setting Goals for the Client
The behaviours were analyzed by the ABA team to determine why they happened. A plan was crafted to redirect and support healthier self care, rebuild communication, and provide tools to help move us both forward when we got stuck.  Goals were set so progress could be reported and any new behaviours could be addressed as soon as they were noticed. 

The goals were aligned with what I advocated - James is a social guy who is curious about and likes people. He gets a lot of positive experiences by being able to interact with people and is almost giddy when he can communicate and create connections with others. He likes periodic contact on FaceBook and is happy to text and call people on the phone. All of his current ABA goals support that (as well as many of his IEP goals at school). He will need all these skills and tools after I am no longer here.

I know there are those in the autism community who feel the focus should not be on fitting into the neurotypical world, and I say good for them. Autism is a really unique condition. I would hope that any ABA program will align with the goals of the client, or those who understand and advocate for them as needed. I hope that there will be greater understanding by the general public and organizations for those who are differently abled. There really is a lot to discover.

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.