Life with Fragile X Syndrome

We’re so glad it’s over and….we got pretty much everything we wanted.

Monkey is going to continue to receive in home services from Building Blocks (new providers but the same therapies) and he’ll start getting his ST, OT and PT through the school. Duhdee will have to drive him to the schools for those sessions, the schedule needs to be worked out between us and the new providers.

Starting in September he will be in a fully integrated preschool class. It’s pretty much perfect. He doesn’t have to start full days until he’s ready, they’re leaving that up to us to decide with his teacher. They don’t think he needs the transition classroom…they think he’ll do well in a regular classroom and they don’t want to force him to go through all those changes unnecessarily.

They also put in his IEP that they want him in a mainstreamed Kindergarten with whatever supports he needs but they don’t want him in a special education classroom.

We’re really pleased with the outcome!

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. Read more →

We had another meeting with the IEP team.  The IEP programming piece is looking really good, they have given us almost everything we requested.  Our advocate was pleased with how it’s shaping up. 

Read more →

What a relief.  This has all been very stressful and time consuming but the last of the evaluations are DONE!  Yay!

We don’t have the official results but based on what the evaluator told Duhdee I think Beverly is a real possibility for us.  She agreed  with the speech evaluator that it is essential that he be in a total communication environment.  She recommends adding a picture exchange system to his signs (which we are experimenting with) so that down the road he can transition to a device that uses pictures to form sentances and speak for him.  She said he’s not ready yet for a device like that but did suggest some software that will get us moving along that path.  Our next meeting is April 9th and we’ll discuss what sort of services Monkey will need/receive.

Since you all may be wondering, The Beverly School for the Deaf is a private school in Beverly, MA.  Despite what the name implies, it is not a school solely for kids who are deaf or hard of hearing.  They have a fantastic integrated program that serves kids with all sorts of communication problems.  They have typically developing peer models that are in the classes (these kids have no special needs.) They have kids with hearing issues but no developemental delays.  They have kids with a wide range of developmental delays.  The common theme is that these kids all need a variety of methods of communicating.

They use “signing exact english” in all parts of the school so everyone learns  and understands sign language.  They also use spoken english in all parts of the school.  They also use any other methods of communication that the kids are successful with (picture exchange system (PECS) for example.)  Research has shown that the more methods of communicating that you give a child the more likely they are to learn language/speech.  It’s really fascinating really.  I know some people believe it holds kids back and keeps them from learning to talk but experience and extensive research has shown just the opposite is true.

So that’s where we are at for now.  We’re going with his current strength (ASL) and working toward finding another way for him to communicate (speaking, hopefully, or some sort of technology.)  I suspect that at some point he’ll go to a mainstream classroom in Cambridge, that is what we want for him, but we need to make sure he has the tools to communicate, learn and make friends first !

Hey all, I figured I should update on where we stand, it’s been a while since I’ve commented on the situation.

First, no decisions have been made.  Duhdee and I have toured an integrated classroom at the Beverly School for the Deaf and a substantially separate classroom and an integrated classroom in the Cambridge Public Schools.  Our first choice is the Beverly classroom, second choice is the integrated classroom at Cambridge.  There is no third choice for us.

All but one of the evaluations that are being done by Cambridge are done.  We have one more on Monday for assistive technology.  The results so far are exactly what we expected since they relied heavily on our reports and on the EI reports.  Monkey just isn’t a kid that a stranger can walk in and try to test so they did few actual “tests.”   He has been determined eligible for special education, which was really a given but they have to work through their “process.”

At the next meeting we will start working on a draft IEP.  We know he’s going to need PT, OT, ST and special education (they will have to modify the way information is presented for him to learn it.)  We’ve been working with an advocate and she has been awesome.  She has walked us through an IEP so we had our own draft/outline which we presented to the team at the last meeting.  They seemed to agree with our suggestions at first glance so we’re hoping they will use our outline to prepare their draft.

After we get the “program” we want for him written THEN we’ll talk about placement.  The CPS ST and the team leader are going to visit the Beverly program next week to see what they have to offer.  We are cautiously optimistic that they (at least the ST) will be willing to send him to that school.  If not, then we will have to discuss the need for an aid and which classroom in Cambridge he’ll attend.