It’s a new season…It’s fall…
It’s been years since I last posted anything of note. I find myself living in my head so need the outlet of putting thoughts to paper so to speak. Not that any paper is involved. I feel like this is a pivotal moment in my life as well as that of my family’s. September is our shared birth month so new trips around the sun starting this month and new happenings. I think I’ll start with Cole with this re-entry into sharing.
Cole’s now 23 which I find hard to believe 23 years have passed. Having a child (young adult) who is dependent upon you for pretty much everything is a complicated existence. No matter the circumstances, bringing a child into the world, into your world, means making the child the priority. It means significant changes to your life, including unconditional love, joys and sorrows, frustration, jubilation, pride, purpose and so so much more. However, having a special needs child who is dependent on you for accessing the world, and small bits of life like personal care, mobility, communication, feeding, transferring, socializing, really, everything, is more than an outsider can imagine.
Besides all of the daily needs and tasks that go into helping create and shape a life, there is a constant need to advocate for your child in ways that parents of typical children don’t have to. It can be a full time effort to manage healthcare, insurance, social security, and conservatorships. It can be a full time effort to find the best placement or programs where your child is not marginalized, ignored, or abused.
Just before Cole turned 22 he aged out of our school district where post high school he had been attending a “CTC” (career transition campus) where he spent weekdays working on life skills, having social and community opportunities, and a focused class path (he did film production the first two years and then moved into the social media class for the duration). Knowing this would end at 22, we put him on waitlists for the handful of adult day programs in and around Los Angeles. There are actually very few programs that are appropriate, or willing to support, a young adult with Cole’s significant needs, that simultaneously are appropriate and willing to support his interests and social needs and curiosity.
At the end of the CTC, we were no closer to getting into a choice program so opted to place him in one that had availability as a transitional placement. The staff was kind, friendly and treated Cole well. He was bored, frustrated, and unhappy and it showed in his behaviors at home for the almost year that he attended. There was very little engagement, peer to peer socialization or stimulating activities. It mostly felt sad. He did not thrive, though we all agree, even in hindsight, that it was better than him staying at home every weekday doing nothing more than watching YouTube or TV while we attempted to juggle full time work and his needs.
Cole finally did get into our top choice of day programs and is starting his third week there. It’s out of our county so transportation is not provided and we’re driving at least three hours a day to get him there and back home but for now it feels worth it. From the first day his mood coming home flipped. He’s been happier, calmer, and more cooperative. He’s feeling like his days are more fulfilling. He has friends at the new program and their days are filled with activities like zumba, creating art, learning computer skills, and when downtime is needed, lounging together out of their wheelchairs watching an episode or two of Friends (one of his favorites). There will be community outings as things get more settled and chances to learn how to sell their art online, creating an opportunity for the participants to feel valued and seen. It took a lot of work and time to get him into the program (don’t even get me started on the reams of paperwork that are required), and the driving in LA morning and late afternoon traffic sucks (100 miles a day!), but knowing he’s now attending a program where he has social interaction and is making new friends, and doing all sorts of different activities, and is happy to attend is everything.
Beyond the weekdays, Cole’s still dancing on Saturday mornings and continues to love it. Music plays such a big part of his life and we took him to see Vampire Weekend (one of his favorites) and English Beat over the summer at the Hollywood Bowl (an iconic LA outdoor venue) and he loved it. I’m taking him to see Suki Waterhouse at the Greek Theater (another outdoor venue) next month with friends and hoping he’ll have the same positive, fun experience. We’re also taking him to see Ina Garten (the Barefoot Contessa) on her book tour and I’ve reached out to her team to see if she could spare a minute to do a quick “Meet and Greet” with him. She has been Cole’s favorite Food Network star since she first aired in 2002. He’s loved her for most of his life so it will blow his mind to see her in person and hopefully to meet her. We also have tickets to see “American Idiot” play later this fall. He loves Green Day and I thought it could make for a fun theater experience.
Cole doesn’t gravitate to all of these kinds of events because his anxiety gets the better of him but because these are the kinds of activities where he has good social opportunities as well as the entertainment value, I keep trying to get him to embrace the experiences. It really helps when there’s familiarity but going with friends helps a lot too. More than anything, I never want him to feel like he’s missing out on things that could bring him joy.
He’s still doing private speech and now working on a new “language” because when he aged out of our school district coverage, we had to return the communication device he had been using since high school and procure one ourselves. His new device (a Grid Pad) uses PODD software (Pragmatic Organization Dynamic Display). It’s different from what he was using for the past eight or so years so he’s been working to learn and utilize the new device. It’s not completely starting over but it is a new language. I typically describe it as he learned to speak Spanish, and is now learning Italian. Both are Romance languages and there are similarities so picking up Italian will be easier because he knows Spanish. He’s doing okay with it but could do better. He chooses not to use it more often than he should because using eye-gaze to communicate is taxing and hard and sometimes just too time consuming for him. We can’t seem to impress upon him how freeing it would feel to be successfully communicating his needs, wants or just dumb jokes. Sigh.
I feel like I could share so much more but this also feels like a good update, and writing is much needed and welcome release, even if no one winds up reading it. Just getting things out of my head brings clarity, so thank you if you happen to come across my musings and take the time to read.









