Tuesday was intense.
It was Simon’s last day of school.
Ever.
He’s got a great post-grad living skills program he’ll be
going to next year but traditional school as we know it is done. Finito.
Over. Bye bye. Gonzo.
Transitions are hard and goodbyes are particularly brutal
for Simon so it was an extra spicy day. I wasn’t sure he’d get out of bed but
my wife worked her magic and he went to school. To cut down on transitions, we
arranged for him to stay at school until graduation that night but he noped out
of that option and took his ride home.
After a few hours of us and his amazing therapist (who dropped by the
house twice!) trying to negotiate and barter and cajole him to just set foot
back on campus for graduation, we decided to honor his clear HELL NO and accept
that he wasn’t going to go at all.
Laura and I decided to go without him. I’m not going to lie,
it felt terrible and weird and wrong driving there on our own. I shed some frustrated, disappointed tears on
the way and indulged in about 20 minutes of generally feeling quite pitiful. I
pulled it together and we walked into a hot, crowded, noisy room. I sobbed
watching the grads in their swag file past us, Pomp and Circumstance blasting
from a tiny speaker, a little bereft we weren’t getting to watch Simon participate
in this rite of passage.
As the ceremony continued, my feelings began to shift. As I
took in people having big feelings, graduates sitting together in stiff robes
and hats, teachers praising each student individually, graduates pulling it together
to read prepared statements to a room full of people, and the emotional photo
montages the Principal created for each graduate, I realized that almost every
single thing about that whole evening would have been absolute torture for him.
I felt a swell of pride that my boy knew himself well enough to say NO. And we
listened. It dawned on me that this ceremony
was important for Laura and I, but not for Simon, and that was ok.
When it came to the presentation of diplomas, the principal
pulled one out, looked at it and put it on the table, moving onto the next
one. Laura shouted from the back of the
room “We’ll take it! We’ll take it!” and
we both ran up to the front of the room.
Someone from the audience yelled “Yeah, Simon’s Mommies!”. Everyone cheered
for Simon, we took a proud and cheezy picture with the Principal and ED and ran
back to our seats, laughing. Laura brought
Simon’s yearbook and after the ceremony, she ran around like a kid, getting as
many staff and teachers to sign it as possible. Simon may never read the inscriptions, but we
will. We can absorb the love he has coming
at him even if he can’t.
I know we have net after net after net, but today, maybe
more than Simon’s 18th birthday, marks the transition to
“adulthood”. As a parent of a kid with profound challenges, it feels like we’re
falling.
He’s the most interesting, creative, funny human I know and
he’s a 5 foot tall, 100-pound male bodied person who converts hard feelings
into super intense verbal rants. His outfits, which get amazing feedback and
are beautiful expressions of his soul, also may make him a target as he enters
the adult world more and more. The
expectations of him and interpretations of him are changing and they’re not
going to match up with reality. We will do all that we can to mitigate the
impacts and teach him skills and build his resilience, but I can’t help feeling
like the door is opening and we’re about to step into the ring at the Coliseum.
I have a lot of friends who have been on similarly
“alternative” paths with their kids, so I don’t feel alone as much as I feel
tender. The bittersweetness of gratitude for the school that’s held him for the
last 7 years, excitement about his new program and anxiety about the
transitions happening and coming up are a lot.
He’s on a trip with my Mom in Monterey as I write this and
he’s going to live his best life this summer, with lots of sessions at a camp he
loves. Laura and I will continue to plug away at the administration involved in
parenting a developmentally disabled adult, including formalizing Shared
Decision Making documents (we’re not doing Conservatorship), applying for SSI for
him, and preparing to learn a whole new institution (Helix school) that will
hold us hopefully for the next 4 years as he continues to learn to adult to the
best of his ability.
The only thing constant is change, right?
