Anyone from MA?

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Registered: 04-04-2003
Anyone from MA?
8
Tue, 07-10-2007 - 11:35am

Hi,
My 4 year old daughter was recently diagonsed with PDD-NOS. Instead of a lack of information on PDD, we are finding WAY too much to sift through at this point. DD is at a preschool now and we are going through the process of getting a CORE, but it may not happen until September and we had plans to send her to a local parochial school in the Fall (which clearly might not be the best place for her). I was hoping someone from MA (Boston area) was out there that I could get some advice from for local resources, schools, etc.

Thanks in advance,
Patty

Patty and Abby 1/28/03

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Registered: 03-27-2003
In reply to: psaint
Tue, 07-10-2007 - 12:12pm

Welcome Patty!

I live in MA, but I'm afraid I won't be very much help to you....I'm in the Sout East, I might as well be in RI as far as I'm concerned because it's much easier to get to Providence and Warwick for me than it is to get to Boston.

So far nothing around here is good at all. Especially not here in Fall River. It basically sucks. I was talking to another mom just this morning whose DS has a tendency to wander off. He had an aide at our neighborhool school, but he was still able to wander off at recess and walk down the street to his house. And it happened at another school that was close to his aunts work!!!! Most of the schools in our district are completely clueless. I'm sure if you live in a more well off area that there are tons of supports and ideas from the schools and I'm a bit jealous!! LOL

Our DS is tough. Most of the time he presents as a typical kid. I often question the Asperger's dx. But then he gets stuck and I still have that "aha" moment. I think that is part of the reason we are finding a hard time finding services for him. He can be very socially awkward with some neuro-typcial kids, but he doesn't seem to fit in with most typical spectrum kids either. He seems to get along best with the quirky but undiagnosed kids. We have a hard time finding the right match for him at social skill groups...etc.

I joined the Asperger's Association of New England. http://users.rcn.com/aane12/ I'm not sure if they include PDD in their services but check their website. They've just started their own email support group and there are many families up your way getting alot of help through school and private institutions. If we could afford to live in those areas we'd move in a heart beat. I'm getting closer to biting the bullet and just renting some crappy apt in a nice school district so Sam can get a more appropriate setting.

Renee used to be in MA.......she probably know more than I do. I know there's Beacon and the May center. Dr. Rosenn has been rated highly by AANE and other members I've emailed with. I'll keep my eye out to see if anyone mentions anything else.

I hope I didn't get you too down. MA isn't all bad, I just happen to live in one of the worse areas for SpEd kids unfortunately.

Chrystee

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Registered: 06-25-2003
In reply to: psaint
Tue, 07-10-2007 - 12:16pm

Patty,


I don't think we have anyone here who currently lives in the

-Paula

visit my blog at www.onesickmother.com
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Registered: 04-04-2003
In reply to: psaint
Tue, 07-10-2007 - 12:42pm
Thanks, Paula and Chrystee. We live in West Roxbury, which puts us in the Boston Public School system. We had no plans to send her to public school--we planned to send her to Holy Name in our town, not because we are overly religious (we are not), but because we have direct knowledge of their curriculum and environment and considered it a better alternative to public school. She is all registered for September, but that was before the diagnoses. Honestly, I always knew something was off with her, but as a first time mother of an only child I just didn't trust my insticts (or chose to ignore them). I know this school system does not have to provide services and has a reputation of not truly supporting children that do require some help, but I have also spoken to a few parents with children with learning issues and they say their kids are able to do well in this school with additional resources provided out of school. I'm not sure she wouldn't do ok since she really thrives in structure, but for how long? I can't get her into the public school since she is not yet 5 and they do not have to place her until then or until they determine she needs the services (which ever comes first, the CORE will happen in Sept.). Besides, even if she did get in now I'm not sure I'm ready to send her to the big scary public school (it's down the street, I have been there a few times). I also have another option of leaving her at her preschool for another year, which is a warm and loving environment with some structure, but she really isn't learning much. DH thinks we should keep the plan of Holy Name in the fall and see how it goes. She has had a speech and OT evaluation done privately and her speech is ok for now and she has been to 2 OT appointments so far this summer (scored very poor in many areas related to fine motor skills-can't do scissors, holding a pencil/pen is not her favorite thing) and we will continue for the rest of the summer.
Sheesh, I did go on and on, didn't I? I'm just really confused and want to do everything I can for her, as we all want to do.
Thanks,
Patty

Patty and Abby 1/28/03

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Registered: 06-25-2003
In reply to: psaint
Tue, 07-10-2007 - 12:49pm

I agree with your DH.


Leave here where she is for now. If things go horribly wrong, you can pull her out, maybe try to get her back into preschool and start K again next year.


Even if things go right, but you think she might need more specialized services, you have the option of starting K again in public school.

-Paula

visit my blog at www.onesickmother.com
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Registered: 04-04-2003
In reply to: psaint
Tue, 07-10-2007 - 1:03pm

Wow, thanks Paula. I'm sitting her crying, not because your words were at all "cry-inducing" but because it's so nice to finally get some advice from someone that understands. Friends and family say "she is fine, she has such an imagination and is so charming". True, she is charming, but all she is really doing is repeating the dialogue from something she has seen or heard. We reenact one entire episode of Max and Ruby all the time and if she is interuppted we have to start all over again. It's cute to an outsider (it's a Beauty Shop story where she pretends to make over the Queen) but it's hard to watch because I can see her trying so hard to get it just right.

I think I will stick around, and I promise not to be so self-centered!

Patty

Patty and Abby 1/28/03

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Registered: 03-26-2003
In reply to: psaint
Tue, 07-10-2007 - 1:18pm

As far as schools I am out of the loop there, but i do know a bunch of autism type programs and resources in that area (used to live/work there in the field).

First, have you checked out the LADDERs program. There is a website. They do alot of diagnostics and etc with kids on the spectrum. They have lots of resources and a parents group that should know the area well. They were located in Natick area when I was there but may have moved. They are originated from Mass General I believe so will still be in the boston area. http://www.ladders.org/

Also, check out BEACON services. They do a lot of services for young children with autism spectrum disorders in that area. Part of which through school districts. I know they are consulting and helping a program in the Framingham area that sounds really good. The directors are very knowledgable and run regular conferences in your area is my understanding. http://www.beaconservices.org/

Renee

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Registered: 07-13-2007
In reply to: psaint
Fri, 07-13-2007 - 1:43pm

Hi,
I live in Southeastern MA. This is also my very first post to this board. I usually just read them for information but I felt compelled to respond to this one. We just recently had our 2 1/2 year old daughter diagnosed with PDD-NOS. Like many of the other moms here, I also knew something was a little different with her despite the fact that everyone in my family said its a phase and she'd outgrow it. We've had her in Early Intervention since she was about 15 months old originally for a language delay. We were so focused on language for the last year or so that we didn't really notice that her social skills were non-existent. So a few months ago we contacted the National Autism Center (www.nationalautismcenter.org) located in Randolph and within a few weeks we had a diagnosis. It is affiliated with the May Institute and is a brand new facility which houses some May classrooms. They brought us on a tour and it was awesome. We have already determined that when our daughter reaches school age, if we feel that public school isn't the right choice for her then we will be enrolling her there. My EI contact also gave us a packet of information with local resources. Besides Beacon & May, for the Boston area there is also Building Blocks (www.nsarc.org) and HMEA (www.hmea.org). The Mass Department of Public Health website also has a ton of information specific to this state.

Sorry this is so long-winded! I am still at the beginning stages of gathering information so I'm sure I'll come across a lot more as I go.

Thanks for listening!
Angela

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Registered: 04-04-2003
In reply to: psaint
Tue, 07-17-2007 - 8:57pm

Thanks Renee and Angela! So much information...I didn't know about LADDERS, Beacon Services, or the May Center. I'll be as educated as all of you in time, right?

Patty from Boston

Patty and Abby 1/28/03