The Fragile X Clinic (Day 1 of 2)

On Thursday and Friday we went back to the FX Clinic for Monkey’s yearly evaluations.  Thursday was the long day, he had a psych evaluation and his OT evaluation, the two were scheduled to last for a total of 5 hours combined with a break for lunch in between.

The fabulous Dr. G conducted the psych evaluation again this year.  Monkey hadn’t seen her since March when it was decided that we had the tools we needed to continue with her behavioral plan.  We did update her in May when the plan finally reached it’s primary goal of Monkey walking into his classroom under his own power.  The room she uses is really, really small.  Monkey normally doesn’t mind it but he was struggling on Thursday for some reason.  I left the room to fill out REAMS of paper evaluations while Duhdee stayed with Dr. G and Monkey.  After she had finished I went back to the room and we discussed current issues and concerns.

We gave her copies of the various reports and IEPs that the school has provided recently.  She had some concerns with the goals that were proposed (and those on his last IEP) because they were too vague.  She wants numbers and measureable goals, not language like “will improve self-regulation.”  She also wants to see academic readiness skills on there, colors, numbers, shapes, recognizing the letters of his name, etc.  She feels like this year was a bit of a waste for him.  He DID make progress, of course, but she feels that if he had been given the proper behavioral supports that he could have done so much better.  She doesn’t want to see that happen again. SO, her report is going to include a lot of very specific goals and behavior related suggestions.

Our meeting with Dr. G ran over so we had to ask the OT to delay the evaluation until we could eat lunch.  Only in Boston is it going to cost you almost $30 for 3 sandwiches, 2 drinks and fruit.  Oh my.  Monkey did eat the tuna salad though which is nice, he’s never been a fan of sandwiches (besides PB&J) so we weren’t sure what to expect.

After lunch I had to go back to work.  The evaluations and the IEP happened at the very worst time possible from my perspective.  I am basically doing the job of two people last week and this coming week.  Ugh.  Duhdee took Monkey to his OT evaluation and he did GREAT.  It was the same OT as last year and she could not believe it was the same kid.  Duhdee left the two of them alone for the evaluation and sat in the waiting room and it seemed to work wonders for Monkey.  One of the goals on last year’s IEP was to build a tower of 6 blocks, the OT left it on the IEP for this summer/fall because he hasn’t met it yet.  He did during the evaluation so I guess we can update that one now.  He has made 5 months of progress in the last 12 months which is a bit discouraging but he is showing so much more maturity.  There are a couple of skills that are holding his score down that were not put on his IEP previously so she is going to recommend those goals for next year.

So that was day 1.  He had a rough AM session but bounced back for the PM session.  We are going to get some great, specific goals from both evaluators in their written reports which we’ll provide to the school.  We should be in good shape for our next meeting.

Day 2 up next but we have a family barbeque today in New Hampshire so I need to get motoring 🙂

SO much to share.

We received a revised version of the IEP after the teacher received my note.  I don’t have time to read it today.  I’m swamped at work and I’ve missed way too many hours over the last two days for the clinic so I’m drowning.  I’ve forwarded all versions of the IEP to our advocate and we’re going to talk on Monday about what we should do with our multiple drafts.

Fragile X clinic visits btw, very cool.  I can’t wait to share, how’s that for a teaser?