Status update.

We saw the substantially separate/transition classroom that CPS proposed at our last meeting. It’s OK.

There are 3 kids in there right now and 1 more starting after vacation. 3 of those 4 may be in there in the fall, 1 is being mainstreamed. There are two teachers. One is trained in sign (though possibly rusty, she doesn’t have much chance to use it according to the director.) One of the girls is non-verbal (I think), one has 11 words, the boy is on an IEP from another state b/c he doesn’t speak English so he is the one being mainstreamed.

There are no typically developing peer models although there is an integrated pre-school class down the hall and they want to build a relationship between the two to allow peer model interaction but they don’t have any set plans (ie we don’t know if it would be 1/2 hour a day or week or what.) The class currently runs for 3 hours/day but is expanding to 6 shortly. The classroom has only existed since Jan so everyone is a bit new at it.

The director asked us to come up with a plan for what we’d like to see for placement. She’d like for us to generate a list and she said they’d do the same and then we can “negotiate.” Some options tossed around were:

  • continue w/Building Blocks services until fall, start the transition classroom and reevaluate as need until he’s integrated (this is a common goal for all of us)
  • start the transition classroom full time in May/June/summer and integrate in the fall if feasible
  • start the transition classroom part time in May/June/summer with complimentary building blocks services and integrate in the fall if feasible. (I think this is my favorite, btw)
  • other? We are free to dream up what we want to see here….I’d like to see some hard time commitments on access to peer models for Monkey. Currently of the three kids in the classroom two are on one schedule and one is on his own…so they can customize to a degree.

I think she wants us to build our “dream” placement for Monkey and then try to hammer out how to make it work for everyone.

Beverly is out. They won’t recommend placement there. She gave two reasons:

  • She sees it as the most restrictive environment for Monkey, he would be one of the higher functioning special needs kids there and she was not impressed with the level of interaction she saw between the peer models and the special needs kids. She felt it was b/c the special needs kids were so far behind the typical kids that they had nothing in common/no incentive to interact.
  • CPS wants to try to serve Monkey, she thinks they can do so and would prefer to wait a while and see him in an educational setting before they send him out of district.

Both valid points, we’re not terribly disappointed. We were not a huge fan of the commute that would be required and we had sort of the same sense that the director did about Monkey being one of the higher functioning special needs kids but we knew we weren’t seeing all the kids that day so there was some thinking that maybe it was just a skewed day. She saw most of the kids enrolled in the program.

I’m not 100% sure about how the ASL gets supported in CPS. I think in the transition classroom with such a small student/teacher ratio it could work if the teacher is comfortable enough with sign and uses it on a daily basis. I’m not sure that the same will be true once he moves to an integrated classroom and the student/teacher ratio rises significantly. I would think all the teachers/assistants in that classroom would have to be ASL trained unless he’s given a one on one.

We did the Fragile X clinic at Children’s Hospital as well. It was a good experience, I let them know we have our next meeting a week from Monday so they’re going to get their list of recommendations to us by e-mail before then. We won’t have their full report until after that but they’ll get us the relevant stuff as soon as possible.

Yesterday we had an eval with their OT, her comments were that she’s more concerned with his visual motor planning vs his grasp b/c she feels his grasp is coming along but the other is noticeably lagging. She was surprised by how much vestibular input (read swinging, lol) he craved and tolerated. She feels that it’s important that he have access to suspended equipment once or twice during the day to help regulate and that it should be paired with proprioreceptive input (read roughhousing or squishes) to keep him in balance.

Today we saw Dr. G, the psychologist, who Monkey loved and actually cooperated with! You could tell she was well aware of Fragile X issues b/c she set up the tests as parallel play (playing next to each other) instead of direct play (playing facing each other), which made it much easier for Monkey. We have to remember this tip for the future! He did a really good job, she found him to be very bright and engaged. She was impressed with him overall and had lots of forms we completed to get a fuller picture of him. Monkey was signing pretty freely for her and he even did some matching! She didn’t really share any suggestions but I’m sure we’ll see something come from the team once they have a chance to meet and talk.

We also met with the genetics counselor and the geneticist (Dr. Picker) and they were awesome too. Dr. Picker thinks he’s doing fantastic. He did a quick physical exam of Monkey which he tolerated with very few tears and no where near the meltdown mode we’ve seen with some (unnamed) Dr’s. The most pronounced Fragile X characteristic Monkey has is the hypotonia (loose ligaments) which we’re all aware of. His arch is still tending to flatten out when he’s standing but it has shown improvement since he was seen last year at the MGH clinic, which is nice! All the barefoot time is paying off. His heart is good, they have no worries about his vision or hearing. They WILL be involved in the drug trials as soon as the FDA gives the final OK (the same drug trials underway in Europe right now) and we’ll be notified of that when it starts.

So that’s it. They did say we’re totally on the right track with him now so we felt really good about that. It’s also good news b/c we are BURNED out. No more evals for at least a year…unless something major changes. I think we’ve found out what we’re going to find out. We may participate in some research trials (non-drug related too) but otherwise we’re just going to be for a while 🙂

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