A year ago today, October 22, Simon received his first preliminary ASD diagnosis at Seattle Children’s Autism Center. The diagnosis was confirmed in December, but October 22nd was the first appointment where we had a medical professional utter the words, “Simon has autism.”
It’s hard to believe that it’s been a year.
A lot has changed in that year for Simon and for the rest of the family. We’ve moved to a larger home and Adam was fortunate to find a telecommuting job. Eleanor has started kindergarten. George is receiving Early Intervention services, working to overcome his own delays, and we are waiting for further testing to see if he is also on the spectrum.
Simon is doing wonderfully well right now.
His sensory issues have greatly abated. He is no longer chewing his hands and feet bloody or chewing on the walls. He is no longer banging his head or spinning.
We are going to be working on potty training over Thanksgiving. He is definitely showing signs of readiness and actually peed in the toilet twice over the weekend.
His sleep is still an issue off-and-on, but he’s no longer waking up at 4 in the morning to watch the Weather Channel.
In fact, he hasn’t watched TV in almost 9 weeks.
His aggression is improving, which I greatly attribute to his increased communication and lack of screen time.
And speaking of communication….
Simon’s current list of words/signs/sounds:
- All done
- Apple (“appull”)
- Cow (“Ow-a”)
- Cat (“At”)
- Dog (“Aug”)
- Jump/hop (I can’t tell which, but he jumps when he says it)
- What (“ut!”)
- No (Na!)
- Letters: c, f, l, m, n, r, s, x, z
- Numbers: 1, 5, 6, 7, 8, 9, 10
- Animal sounds for cow, pig, duck, cat, dog, sheep, and horse.
- Current sign count is upwards of 15, including ‘read’ and ‘hurt’.
He’s got a few other vocalizations that clearly mean something, but we haven’t been able to figure them out yet.
He can spell his name both verbally (he kind of grunts for the ‘o’) and with letter magnets.
Considering that a year ago he had ZERO words and only 5 or so signs, this is pretty fucking incredible.
His teachers agree that he most likely is already reading and even possibly doing basic math. We just have no way of knowing for sure since his communication is still limited.
I still get really sad about his autism sometimes, though. It’s hard seeing his typically-developing peers and all the things they’re doing/saying. I worry A LOT about him and his future and our family. I get frustrated and sometimes I yell. I don’t sleep well anymore and am perpetually exhausted. I’ve lost friends during this year; some were people who chose to leave, others I chose to distance myself from. I’ve also gained friends in the autism community who are always there for advice or support. And there is an entire community of family and friends (some of whom I’ve never met in real life) who are always ready to cheer on Simon and his accomplishments. To all of you, I love and appreciate you all so much!
This has been one of the hardest years, but also one of the most wonderful.
He is my happy, wicked-smart, amazing little guy who loves to honk people’s noses and I wouldn’t trade him for anything.
He’s got a long road ahead of him, though. But, then, don’t we all?