He grew up a little right before my eyes today.

Duhdee and I took Monkey on his very first hike in July and we noticed he had a great time but struggled on the more uneven terrain. Duhdee and I love to hike and we’d finally decided he had the endurance to do some easy ones. We were taken a little off guard to see his struggles and decided we needed to give him more opportunities to practice. All summer long we have been going on longer and longer walks and adding more difficult terrain. Today we tried the longest and most uneven trail of the summer and Monkey did so well! I could see clearly how much more attention he paid to his feet and where he was placing them. He was so much more confident too. He only asked to hold my hand very briefly on a steep part of the trail covered in loose gravel. I was so proud of him!

That is not, however, what the title refers to. The moment today when I was faced with more undeniable proof that my little boy is growing up occurred at the summit. We had sat down to enjoy a snack of grapes and apples ((Honeycrisp!!!)) and Monkey stood, turned to look at me and belched. Duhdee and I, being mature adults, completely cracked up. Monkey looked at us bewildered for a moment, smiled and then PURPOSEFULLY burped three more times…grinning at us the whole time. He taught himself to burp on command. Is he 7 or what??

He talks and talks and talks and talks and…

people understand him!

This child had so few words when he turned 4 that our assistive tech specialist gently broached the idea that Monkey might not ever talk. This was, easily, one of my biggest fears when Monkey was little. People familiar with Fragile X reassured us endlessly that it was more likely that he would eventually talk than not and that, even if he didn’t, we would find ways for him to communicate so, when faced with the question, we told them that we knew he might not and they could make other accommodations but we were not ready to give up yet.

Monkey is 7 1/2 now and he won’t stop talking. It started slowly, a few words that made his life better…more, milk, o’s, and then it started to speed up, to use a metaphor Monkey would appreciate, like a runaway train. We’ve hit some sort of critical mass this summer. Instead of new words each week or each day we’re getting new words hourly at times. The best part is that all of his speech is more intelligible these days, we aren’t the only ones who are understanding him. He spent a weekend with my parents and there were very few things he said that they didn’t understand.

As if that weren’t enough, he is now suddenly using sentences and asking questions. “What are you doing up there?” to our neighbors on their 2nd story deck (they were eating waffles.) “What’s that?” when he hears a strange noise (it was an excavator, which is a little too close to escalator for him at the moment.) He’s even combined sentences, when asked if he’d had meatballs for lunch he responded, “Yeah I did. It was great!”

Some of my favorite Monkey sayings at the moment are…

  • Oh, goodness! (sometimes Oh my goodness!)
  • Spuddles! Splash!
  • Hold on tight!
  • Go through it!
  • Go for it!
  • Oh, yeah!

My most favorite is  one he broke out at bedtime a couple nights ago. Every night I say the same thing to him, “Good night! I love you, see you in the morning.” to which he has been responding “Night! Morning!” … now he’s added “love you!” in there too. It totally turns Money into a spuddle…

The 4th Annual Connecticut Fragile X Conference

Once again Tammy and Andy Selinger are hard at work organizing their one-day Fragile X conference. This year the conference is on Saturday, November 19th at the UConn Health Center in Farmington, CT ((Very close to Hartford.)). The topic will be “Successful Transitions – Planning for the Education and Employment Years.”

Vickie Sudhalter, PhD and Laurie Yankowitz, Ed.D will be the presenters.

**So that’s the OFFICIAL information**

The following are the top TEN reasons I think you should attend:

  1. If you haven’t yet attended one of Dr. Sudhalter’s presentations, you simply must! We absolutely LOVED her presentation at the International Fragile X Conference in Detroit last year. We came home with a lot of very useful information we used to advocate for Monkey.
  2. We haven’t yet seen Dr. Yankowitz present, we’ve heard great things about her presentation in New York in June ((Which we missed, boo hiss for back surgery!)) and we are really looking forward to seeing her.
  3. Tammy and Andy do a great job making sure there is information for all ages, because they are awesome like that. It is always a day well spent.
  4. It always very reasonably priced.
  5. They provide lunch!
  6. In the past, Dr. Picker and/or Sharyn Lincoln from Children’s Hospital Boston have attended and presented.
  7. There’s always a Q&A session after, which is nice. It’s good to be able to pick the experts’ brains and you don’t have to strictly stay on topic so if you have a question…bring it.
  8. We have also bumped into folks from Seaside Therapeutics which is pretty thrilling…psht…I even got a hug last year.
  9. Because I said so.

and, finally,

10. I will be there ((Obvs, that should have been reason Number 1 but I did not want you to stop reading there.)).

I’m like a chipmunk.

I have all these stories stored like nuts in my fat, little chipmunk cheeks and I think it’ time to share them or risk exploding and spraying chunks of chipmunk cheeks all over the place! Ewww, nice visual. Also, welcome back!

So…I now have so much to say I don’t even know where to start. Let’s start where I left off…the IEP.

We signed the hateful thing. We signed it so we could get Monkey into a classroom at a school that does inclusion well. They are the model for ASD inclusion in our district. There are a lot of things to love about the school. It has an extended day so Monkey will be squeezing an extra school day into each week. Because of the extended day, they are able to provide the kids with a lot more individualized support and a lot more enrichment activities. ((He will be getting extra gym, music, library, etc.)) Awesome. The school also has school uniforms. Not a big deal for Monkey, he will wear a collared shirt if we insist, but probably not awesome planning for some of the kids on the spectrum. Not our problem, I guess. I did at least raise the issue in a “what if this is a problem for a child” way, and I got two responses…one was, “Huh. I never thought about that!” ((And she was the school psychologist at the old school)) and the other response was, “Well, we won’t force them if it’s an issue.” ((Right, because the one thing our kids need is another reminder that they do not quite fit in with everyone else))

So all is set, the IEP we signed calls for them to provide us with all of their data every two weeks ((Any information they gather on his progress, the class has some ABA aspects so data collection is a big part of it.)) and a full team meeting every four weeks ((Fine, it says four to six, we are just going to pester them to set them up every four weeks.)). At one of our final meetings someone said that they aren’t used to parents who want to be so *pause* “involved,” I thought that was a nice way to communicate what royal pains in the @sses they think we are. 😉

Wait, did I say all is set? Oops…there is one little thing that is not quite settled. We received two letters yesterday. One from the transportation department offering us a bus for Monkey and the other from the district assigning Monkey to his 1st grade classroom. Both letters indicated that he would be attending a general education classroom at his old school. Nice.

I’m sure it’s all perfectly under control though ((Dang, I have missed my footnotes! Does it show?)).