A New Chapter
Today Benjamin finished his second week at his new school, Project Brilliance. They offer a full week of nothing but ABA therapy, so we have gone from 2 hours per week to about 35 hours of therapy. Not the whole day is therapy, but everything they do is thought out with ABA principles behind it and is managed by ABA certified therapists. I’m excited to see what changes the program may bring for Benjamin.
One interesting change is that there are no naps, not that Benjamin is a fan of the nap anyway. But, the new program is stimulating his brain more and he is tired! The first day he fell asleep at 8:45 p.m., something which is unheard of at our home. Most nights it is like a cartoon episode — all lights are off, TV is off and everyone is a sleep; you can see three sets of eye balls blinking in the dark — Benjamin’s dad, Benjamin and me. Often Benjamin will cheerfully babble in his happy voice. The time is anywhere between 10:45 p.m. to 11:30 p.m. Not an uncommon scenario. I find that I avoid being forth coming to his medical providers because I don’t want the judgment of what kind of parent am I since my child is up at all kinds of hours at night. Benjamin just doesn’t want to sleep. He’s happy, he’s up and cheerful. He’s not crying and being miserable, he’s just not ready to sleep. According to www.autismspeaks.org, 80% of children on the spectrum has sleep problems and according to other studies, the biggest issue is falling asleep. So, I guess I can own that statistic and stop hiding about our lack of sleep.

“No, doctor/judgmental person, my son has autism spectrum disorder and he doesn’t sleep as much as some of his peers.”
Facebook memories pop up all the time and I had one the other day from 2 years ago that said that “Benjamin likes night time surveillance”. Interesting since that is way before there were any kind of documented delays.
The reason I bring this up is that until our new program, I didn’t realize that Autism Spectrum Disorder brings sleep issues. So I can come clean about our lack of sleep and stop feeling guilty about the lack of it. Benjamin likes to sleep in, so many mornings he is dozing off in the car. Unfortunately, our routine leaves a lot of snoozing time in the car: most days we leave home an hour and 45 minutes before Benjamin gets dropped off, so there is time to nod off. There is middle school drop off, elementary school drop off and then Benjamin — then I get to drive to work, much much later.
Our new program has a daily report which contains a therapist part, and a parent part. So each day we have a portion to fill in. One part is food, the other where we went, things we worked on at home and SLEEP — did he sleep through the night (mostly no) and what time did he go to sleep (late).
I used to joke with the director and Benjamin’s teachers at his old program, that Benjamin needs his espresso in the morning and where is his classroom Keurig. Most mornings he would still be sleeping when we walked in. Little did I know that we are part of the 80% statistic with sleep problems.

Our new program has changed our routine. They open at 8:30 a.m., but we are in the parking lot at 8:00 a.m. and we wait…and wait some more. So we have found the closest coffee shop with a drive through. Most mornings Benjamin is awake, so we play in the car. Change the A/C, wipers on or off, radio is on or off and every single button in the car is being pressed. No settings are left unchanged. Benjamin has a ball and is very excited to push all of the buttons. He will hand me my travel mug of coffee so he can sit on the center console and push the buttons. The rear-view mirror has so many finger prints it’s hard to see out of it. The flip side is that there is now an expectation to push buttons specifically in the daycare parking lot and if there are no opportunity to push them then there is a tantrum to follow with crocodile tears. “Mommy, did you change the routine?” Why, yes I did and I will carefully consider the consequences of changing the routine before the next time. While I’m still late for work (every day), I truly enjoy our half hour of button pushing and waiting in the car. It would be nice if they opened a bit earlier, but this is not the case. My middle son is part of the safety patrol program and he has to be at school just before 7:30 a.m., so everyone is early to were they need to be, except me. Plus, this gives time for selfies!

But the transition in to our new program has gone very well. The first drop off wasn’t great, but it has been smooth each day since and Benjamin is happy to be there each morning (unless I change the routine in the morning, of course).
I am excited to see what changes will come. We are continuing to work with our private ABA therapist as she will see changes that we don’t pick up on right away.
Benjamin has also added two more expressions to his repertoire. I had a sneezing spell the other weekend, so after listening to me sneeze repeatedly over several minutes, Benjamin now says “AAAAA-chooo” and just yesterday he has added “oh-oh” when things don’t work out right. Exciting changes :)
We also learned that as long as Benjamin attends private school, we have received word that we are approved for a state funded grant. They have to verify that we are not enrolled in a public school before any funds will be released. I also have some additional light reading to do over the weekend about Social Security Disability…
Go Team B!

