goldilocks

So I went to my first PTA meeting at H's new school. But before you yawn & close out of this, give me a minute...

As most people know by now he transferred out of district about two thirds of the way into the school year, last year. On my list of reservations was (& still is) the separation from his home community. There are really incredible families in our school district, & one of the many details that can make our lives so much better are people who know H & know us... & we just don't have to explain anything. And there are so many members of our community who truly adore him. Obviously this is invaluable.

On the other hand, sometimes our world doesn't have as much in common with others in the same local school-home-community network, even though they are our friends & neighbors. It's just a fact when you have a kid who will never quite catch-up to his same-grade peers. Over the years I've gone to countless meetings, volunteered at dozens of events, participated in anything that I could get Hayden to go to, & sat alongside fellow parents who I not only genuinely like but admire for what they do for our community. But there's always a piece missing from the puzzle of commonality.

Interestingly, primarily due to geography, a similar thing happens when I am with others within the fragile x network. Yes we are one big family in the sense that we all share a unique connection, & again, one of the many details that makes our lives so much better are the people who we just don't have to explain any context to. Being able to say everything & ask anything, obviously this too is invaluable. However because we do live throughout so many states & even countries, some level of disconnect is inevitable. Similar looking puzzle but the pieces are different.

In our home district I have volunteered & been involved in one way or another for every year since H became a student. But tonight I went to my first PTA meeting at H's new school. It was the first time I have ever sat around a table with other parents whose side-dialogue sounded like me talking. A mark on their arm from their child, a story about a broken door at home, a challenging dentist appointment, having to make an abrupt exit from any number of settings... the list could go on. The amount of detail that others don't see because everything seems fine & your child looks fine... but you know better because you have a damn doctorate in recognizing your child's subtle signals. 

My son is in sixth grade & I never quite knew what it felt like to be among other parents who have so many of the same puzzle pieces both at home & in school. Not one or the other.

The decision to basically turn Hayden's world completely upside down was not only difficult, but extremely abrupt. Figuring out what to do next reminded me of the fear I felt when he was diagnosed in the first place, almost eleven years ago.

I can't begin to describe that fear any better than I could possibly explain the relief of finally knowing that we made the best decision. What I can say is that it's absolutely nothing to yawn about because it feels just right. 

---

sixth on the sixth

Before we even pulled out of the school parking lot this afternoon, he was boasting about his day... I can't remember his exact words, whether he said he liked his day or he had fun or both... but he definitely emphasized, "I really did!"

With a semi-stuffed mouth, as my sixth grader tore through the after-school food I had waiting for him in the car, he continued to tell me all about it. First he told me he did AM Anchor (morning news) and that he shared about our trip to Maine. Lucky for me our parrot told his aide (or possibly the entire class) about my ankle, which I twisted in a sand hole on the beach path our second day there.

But on he went in his usual sort of stream of consciousness, and mentioned one of the girls who was back (I can only assume she wasn't there for summer program). He also said another girl's name and then one of the boys, and I asked about another girl in his class whose name I know. He told me so-and-so looked pretty because "she had like a bow in her hair"
(ooohmygosh if only there were emojis and hashtags on blogger....) 

When we got to the next red traffic light I turned around for a second and noticed he was wearing a smiley face ring. I said, "Oh, that's cute-- where did that come from?" And he happily said it was another boy's birthday. I said that was a cool thing to celebrate on the first day of school, and he laughed and said, "Yeah, we sang to him-- the whole class! And I had a cupcake! And we ate pizza..." I think he said they had pizza... my brain was stuck on my child with sensory processing disorder talking about a cupcake.

Either way it's pretty incredible when your son not only offers details of his day, but does so without prompting and even more incredibly... with plenty of enthusiasm. No doubt rare for any twelve year old, let alone one with still-developing expressive language. Incredible is actually an understatement.

It was raining sheets this morning and we lost power. Yet neither dampered Hayden's contentment. As we were on our way for the first day of school I took a photo of him in the backseat right before we left. After everything he went through it is clear his spirit persevered. And I will also say after everything Dan and I faced, I am proud of US. With dignity, courage and persistence we accomplished what we had to. 
Our somber summer concluded with a magical, healing trip to Maine and now, I pray, the school year is truly beginning with a renewed sense of hope.
The three photos on the right were actually taken after we arrived at school. If that doesn't speak volumes...

--