CPSE is fighting Autism Dx in NYC
Hi Everyone,
My daughter is almost 3 yrs old, and she has been involved with Early Intervention since birth. She has a very long and complicated pregnancy/birth story, but basically, she was in the hospital for a long time, and then, at 3 months old, she qualified for OT, PT, and Speech each of which she has been receiving for 30 minutes 2X/week.
I was happy with her providers, and she was clearly making progress. She is verbal, she sings and counts and knows the alphabet, she makes eye contact and shows affection. She is walking and drinking water from a cup. Honestly, maybe my expectations were too low, but I was just happy and relieved with where we were.
Then it came time to get her evaluated for the transition to CPSE. A wonderful psychologist came and did her eval along with a great team of OT, PT and Speech. They made us aware that she is still WAY behind kids her age. In fact, the speech therapist placed her in the 1st percentile for language and communication and diagnosed apraxia. The psychologist, a phd, diagnosed PDDNOS and suggested ABA therapy in his recommendations. (She came out to a 38 on the Car Scale and he wrote that she was more than 25% affected)
Well, our CPSE admin read the evaluations and said that this diagnosis is mild and that there's no way the district will consider placing her in a pre-school for autistic children or getting her ABA therapy unless we get a separate neurological evaluation. She wants to discount the PDDNOS Dx entirely and just focus on speech (which she admits is alarming)
To me, this diagnosis does not sound mild, and I agree with the psychologist and want her enrolled in intensive ABA therapy. I am so stressed out that she would fight me on this. I feel guilty that I didn't notice the issue sooner. Now that it's here, I am just ready to face it and get help.
Has anyone else encountered this kind of resistance from CPSE? What did you do? If you are in the NYC area, can you recommend any programs or evaluation centers that worked well for your autistic children?
Re: CPSE is fighting Autism Dx in NYC
Thank you,
Yes- I am trying to process everything myself and walk that tightrope between telling myself as a mom that "everything will be okay" and telling CPSE that "everything will not be okay!" because I just don't want her to get lost in the shuffle or miss our on services that could help her. Also, finding appropriate education in NYC is seriously overwhelming for any child.
Our CPSE meeting is set for July 10th. On July 7th, I am going to check out a preschool near our home that offers 3 different classrooms. One is 8 kids, all with disabilities, one is 12 kids, half with disabilities, half without, and one is a totally mainstream classroom with 16 kids. I figure something that like that would be good because she can get placed in one classroom and then, if we end up needing to modify the IEP, we can move her to a different setting without switching schools. My preference would be to start with 8 and move up, but I suspect we will compromise with 12.
And yes, her symptoms are a very strange mix of typical and low functioning and there are gross motor issues as well. She can't walk up stairs, she still relies on a feeding tube for most of her meals, and her gait is very unbalanced and awkward.
She cannot do puzzles or stack blocks at all, but she knows the alphabet as a song, and she can also recognize letters and knows what sounds they make, and she likes to sit with books and look through them and say the parts out loud that she's memorized. She also has a decent vocabulary. Socially, although she has a sweet and gentle disposition, she isn't interested in other children at all. She doesn't ever respond to questions, and, when she does interact, she either uses a rehearsed phrase that sort of makes sense or she repeats some part of the question that caught her attention. For example, Question: "Do you want to take a bath?" Answer: "Bath! Water, sink, tub, toilet paper!"
As her mom, I adore her and see all her strengths, and truthfully find her more "quirky" than low functioning. But, as her advocate, I just want to make sure I'm doing everything I can and getting her as much help and attention as possible (in a city where way too many people are clamoring for resources). Ugh. It's just hard.
I am not well versed in the dx side nor do I have the ability to guide you in terms of your daughter's needs. I am however, in NYC, and have heard that the recent changes and budget cuts affecting the BOE re SN services has been pretty hard hitting. I am writing more about what has been explained to me by local parents w SN children.
My son has a place holder dx of "mixed development disability" which we needed in order to get appropriate services never in EI. we went into our first IEP meeting with a thorough private evaluation in addition to our CPSe eval, which helped us get our requests approved. At our early annual last week we lost out dual service rec , as I had been warned I would. In order to continue to receive those services OT and PT I would need to have a private evaluation and script from a neurologist.
Basically, administrators are being forced to cut tons of services and parents are being forced to really fight to have their child's needs met.
I would agree with auntie that you really need a private eval done that you will have to pay for OOP, especially if you don't agree to the IEP and need to go into mediation or a hearing.
What district are you in?
Thanks for your reply! We are in District 30, and they are some tough MoFos (excuse my vulgarity). Our CPSE meeting is scheduled for Wednesday, and I have an appointment with the neurologist booked for Friday, in case we don't like the outcome. Fortunately (or unfortunately) everyone who has come to do an evaluation thinks it's crazy that they are putting up any fight at all because she is so clearly in need of services.
I did check out a special needs preschool today that I really liked. They agreed that their 8 student special ed class would be the best for her (provided she is even able to go to school). I am hoping that this gets approved at the meeting. If not, we will have a fight. . .