Tony with us for a week after five months away…

  • Way less screen addicted
  • More independent
  • Chubby - Less exercise, worse food
  • Depressed

Adam’s Camp was great as usual

  • The support model was striking: the camper-to-therapist ratio was close to one-to-one, with skilled professionals in speech, occupational, physical, and behavioral therapy.
  • SYNGAP1 Connection at Camp!
  • This was Tony’s fifth consecutive year at https://adamscamp.org/.
  • That continuity made a difference. The Adam’s Camp team knew Tony well, and he was a known quantity to them.
  • The team did a fabulous job. Even though Tony can be challenging at this age, and is bigger and sometimes aggressive, everything went smoothly at camp.

More time in Denver.

The hard parts

There were still a couple of moments of aggression within our family. I do not want to pretend those moments disappeared; there is more work to do.

The harder news came after Tony returned to school. His unhappiness about being there has increased after being with family, and it feels as though aggression may be moving in the wrong direction again. We are told this kind of transition is common for kids at his school, but that does not make the incident reports any less heartbreaking.

Bringing him back was heartbreaking. Lorazepam. 

Open Questions

What stayed with me is how well Tony did with people who knew him and a deeply skilled team supporting him. At his residential program, he also receives remarkable support. But at the end of the school year, he is expected to come home, and we are expected to recreate enough of that support with ABA and whatever additional help we can find.

I do not have a neat conclusion. I am trying to understand what is best for Tony, what is best for John, and what is best for our whole family. I am sharing these questions because I suspect many families carry versions of them too.

Related episodes & resources

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Saturday, August 29, 2026 — Week 35

Episode 215 of #Syngap10 #SYNGAP1 #CureSYNGAP1 #Podcast #PatientAdvocacy #Caregiving #DisabilitySupport #FamilyCaregiver #CaregiverSupport

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