Receptive

Today after Toby's speech appointment his therapist talked to me about a receptive language test she did on Toby. He scored a 98 and apparently 90 to 115 is average.  He scored at 2 years 8 months. And go figure. Toby is 2 years 8 months. The caveat, and she will note this on his test, is that she had to keep his hands down. If allowed to point whenever and whereever and/or play with his hands then he wouldn't pay attention and wouldn't participate.  So, bottom line, when Toby isn't distracted, he's a pretty smart boy.

Yup. I knew that.

Disorganized mind.
I go back to this phrase all the time. The psychologist at the Miami Fragile X clinic used it to describeToby when he was 18 months and we visisted for an assesment. And his disorganized mind makes it difficult for him to sputter out the right combination of sounds at the right time so his therapist and I don't expect him to score as well tomorrow when she does the expressive language test.

Kevin and I refer to Toby as a juke box of sounds.  At any given time you never know what he'll be blabbering about. This morning at breakfast he was calling out colors. At any given moment he'll break into Old McDonald. He likes to say Yuck! in and out of context. Or point to something and label it.  He's great at labeling.  Speak to communicate needs, wants, ideas... not so much. Sometimes. Especially when he wants juice, a show, or help taking his socks off, but other than that, not so much.

But he can talk. And he is learning phrases. If I leave the room I will soon hear, "Mommy! Whereareyou?" (I really think he thinks "where are you" is one word.) To Gus, our dog, he is always saying, "Good boy! Good boy!" or "Heal!" These words he gets from me. And tonight I heard him say, "Good boy, Gussers." And that really surprised me. That he gets from my mom because she's the one who calls him Gussers so he doesn't hear it as much. Plus it was three words in a row said in context while he was patting the dog.

He's doing well.

He still has a disorganized mind. He still has no filter when he's excited/startled/quickly stimulated by something. In these scenarios, his response is to 1. throw whatever is in his hand or 2. if his hand is empty to hit whatever is closest. It's a problem. It's like he just needs something to take the edge off, bring him down one notch and then he'll be released from the Fragile X static.

Toby isn't taking anything. Not even circumin right now. We ran out and I wanted to see if I noticed any difference with him off it. It's been at least three weeks and I haven't noticed any difference, so... not rushing out to restock.

But I will be pursuing meds knowledge at this year's Fragile X conference. We've booked the hotel and paid our registration. Kevin and I will be there the whole time. Mom is coming down with the kids for the Friday luncheon and then Kevin is taking Kaden to the Marlins game/Fragile X night at the ballpark. The Mom/kids crew is just staying the one night.

SO excited. 

Because I'm receptive to the next step for Toby. 

****

And now for a photo series from tonight of Toby and "Gussers." Allowing Toby to crawl around in the garage has NEVER happened before but tonight I was buying time for an over-tired Toby while Kaden was in the shower. Toby followed me into the garage when I let Gus in to feed him, so I just let Toby stay and hang out with his beloved Gussers until the tub was free.

Toby showing Gus his feet. 

Seriously. He was scooting toward Gus saying, "Feet. Feet." Gus wasn't impressed.

After I told Toby to, "Give Gus a hug."

Then Gus turned around and gave Toby a kiss, so Toby followed up with a kiss as well.

Then Toby found a packing peanut and decided Gus should eat it.

He was persistent.

I'm not really sure what's going on in this next one. It looks like they're comparing paws.

"Good boy. Good boy, Gussers."

Giddy up!

I kept telling Toby to say good bye to Gus but he wouldn't come. Finally I turned the light off in the garage and he took me seriously.

I love that we were on the verge of TOTAL MELTDOWN and a few minutes with the dog restored the evening and held him through bath/bedtime routine.

Oh and during said bedtime routine I told Blue to brush his teeth and then wait for me in his room with books. And get this - he did. No toothpaste on the walls. No water catastrophes. The kid had brushed his teeth and was standing in front of his bookshelf, books in hand, when I got to him. 

Not always. Ok, not even usually, these boys go easy on me. I so appreciate when that happens.

Comments

[Gran]

Beautiful post - my heart swelled. Such a great family. Family takes work - some more than others. Love you!