This is the fourth blog post I’ve started in the past 6 months, and this one I’m committed to publishing (warning: rambling incoherence likely!). In the past half-year we’ve had a drastic range of experiences with Bryson’s support village. In December I attended our annual IEP meeting (in-person) that was frankly, boring…. it was so relieving/exciting that we had finally reached a place in school and ABA therapy where B was thriving and showing consistent emotional regulation. Over the Christmas holiday I was so grateful and proud of B’s progress, and family who only sees him intermittently were wowed by his progress. In February we were making plans to incrementally decrease ABA services. With the prospect of our family time freed a bit, plans were made for the potential for after school activities and summer fun.
The end of February I attended a local conference for parents of 2E students. It was interesting although less Autism focus than I had anticipated, and I was able to do some valuable networking. In early March I visited the Temple Grandin School for ASD (primarily 5th-12th grade), as well connected with the newly hired Executive Director for the Autism Society of Colorado. I started to connect with a newly formed board preparing to submit a petition for an ASD focused public Charter middle/high school in JeffCo. I had conversation with Colorado School of Mines Disability Services office about initial plans to create an internship program with USGS. I advertised at Mines to hire a couple students to Mentor B for the summer. I outreached with Engineering faculty I had formerly worked with to have them meet with B. I created a more concrete plan for my professional goals and this blog. I was so excited for all these prospects.
By end of March, all this was gone. The week prior to B’s Spring Break we said “see you in a few weeks!” to his school transportation assistants, and we’ve not seen them since. B was good with an extended Spring Break, but by end of week 3 in quarantine, his anxiety was so high that we would fight over every detail of his day. Hand washing, appropriate eating, bedtime routine, he fought it all. After months of no elopement incidents, we were having multiple major elopements per day. We had paused ABA sessions when COVID lockdown was announced, and when the Clinical Supervisor reached out in early April to check in, I lost it. With word vomit and tears, YES PLEASE: we need you back. Remote learning for school didn’t really work, and all the support structures we had spent years building up, disappeared seemingly overnight. As B’s teachers and support staff incrementally reached out to check in, on all ends each conversation was tearful.
One of my early realizations in COVID lockdown- and the first articulations I made to B’s support team members- I am B’s mom, and I can’t be is everything. I don’t want to be his everything. Bryson takes a village of specialists to keep his progress moving forward. Every person in our village is needed for a reason and I have so much gratitude for each person’s work. We are incredibly fortunate to have access to caring people and supportive schooling and therapy resources. While our family journey to diagnosis was still 3.5 years and 7 different school environments before we landed in a place that B showed ability to thrive, that measure of time and environments is a drop in the ocean compared to what some people experience.
As COVID lockdown begins to slowly release, the Gaebler house of emotions is a total mixed bag. Brys has expressed excitement for his August 24th return to school date, he asks for his favorite para-teacher, Mr. T., and in the meanwhile has plateaued in this interests and ability to self-regulate. John gratefully has a stable job, we have maintained a good family income and benefits, and he can maintain safety precautions. Wesley is too young to know the difference, and he loves being home all the time with his favorite people. I feel sad when I think about my professional dreams that have been sidelined or cancelled. Caring for my family has been my full time responsibility. That’s not just an issue of “time management” (as well intending but unaware people have suggested), these three main guys in my life have consumed all efforts I have in me over the past 4 months. And I’m leading the countdown for after Labor Day when pockets of my time can be resumed for my own goals, including blog writing. Here’s to one day at a time.
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