We need early intervention... but I know nothing about it

chaylizi

Thu, Aug 13 2009, 10:55 pm

My ped told me to go for an OT/PT eval & to a neurologist, for Dovy's motor delays. You probably have far more resources than I do in NY, I'm going to have to get him evaluated by the city/public school system. At least it should be free.

ShakleeMom

Thu, Aug 13 2009, 11:00 pm

Gamzu, when my baby is on her tummy she lifts her head up only an inch, and cries after 1 minutes. She does *not* grab a toy if you wave it in front of her... only if it's on the floor. and all she does is sit on her behind 9has to be placed)... The physical manifestations you are describing may be indicative of a genetic disorder which shoes as developmental delays in the beginning. How does she sleep and eat?

GAMZu

Thu, Aug 13 2009, 11:30 pm

Yep, genetic or chromosomal disorder is what I'm thinking. hence, the referral to a geneticist.
Eating and sleeping? She's still fully nursed. She doesn't attempt to put food in the mouth when she is on my lap and I am eating. She might take it in her hand but not in her mouth.
Sleeping... pretty characteristic of a 9 month old. Wakes to nurse a few times, but sleeps well at night. During the day, she sleeps no more than 20 minutes at a time. I didn't think to bring it up with the pedi today as I didn't think it might be connected.

youngbubby

Fri, Aug 14 2009, 12:40 am

Early intervention will help your child get the boost that she needs. When one of my chlldren was 4 months old I realized something was wrong because she woudnt straighten up her legs and put preassure down. I ran from dr to dr and took her to childrens hospital I was told she had cerebal palsey and she was deaf in one ear. We started getting physical therapy through the local school district. The therapist came to my home twice a week, ON the other days I did the exercises with her..At 9 months she stood and at 12 months she walked. she didnt have cerable palsey she had low tone mucles and they needed stengthing..then my own mother remembered that my sister also had weak mucles and she gave her dancing lessons to make them stronger.
Also I am a special ed teacher for 5 to 8 year olds and I see that the kids who had "early on" are so much better off than the ones who didnt. When a problem is caught at a very young age it can be worked on and it helps so much......

Stayci

Fri, Aug 14 2009, 12:53 am

GAMZu wrote:

If you are located in Brooklyn I can give you information about a neurologist and geneticist I was happy with. Thank G-d, it was all for naught.

I may be wrong, but maybe it is more beneficial if you go for the testing prior to getting therapy for your daughter since you don't know what her delays stem from.

I wish you lots of hatzlocha.

youngbubby

Fri, Aug 14 2009, 12:58 am

whatever the situation is dont let her sleep to much during the day. she needs to constantly stimulated...get older kids to "play"with the baby sing to her talk to her rattle toys by her dont let her just lay there and look,,,stimulate her and get people to help.

happyone

Fri, Aug 14 2009, 1:03 am

Stayci wrote:

GAMZu wrote:

I may be wrong, but maybe it is more beneficial if you go for the testing prior to getting therapy for your daughter since you don't know what her delays stem from.

I totally disagree with this. Getting therapy is no contradiction to getting your child diagnosed and/or treated.
go ahead with EI as soon as you can.

I've had a great experience with Challenge and heard really nice things about Step By Step.
If you do get a diagnosis , you are better off using an agency that also has OMRDD services as they can help you access the OMRDD funded programs.
Examples of such agencies are HASC, Step By Step, Womens League adn there might be some more. Agencies that have both Early Interventon AND medicaid waiver services are your best bet IMO.

amother

Fri, Aug 14 2009, 1:08 am

I have used OMNI in Brooklyn, on Coney Island & M. The whole process took about 2+ months until my baby started getting services but in the end I got excellent therapists for him. The service coordinator was very nice but I was pushing hard to reject therapists that sounded bad over the phone. Even if you go with a different agency, I think you can request that they try to arrange services with the therapist of your choice. They could try to hire the specialist you like to work with your baby.

GAMZu

Fri, Aug 14 2009, 1:11 am

Strudel wrote:

How is she socially? Does she interact with you and her sibs?

Socially she interacts well with us- laughs, tries to initiate games, gets excited when she recognizes a game I'm starting.
But outside the immediate family, she won't even flash a smile. She isn't afraid of strangers, so she'll easily go into other people's arms but will scowl the entire time. I don't think she ever smiled at anyone aside from me, DH and the boys. My mother thinks she never smiles and I have to show her pics for proof. LOL.

Oh, and she also doesn't babble. Only coos.

GAMZu

Fri, Aug 14 2009, 1:12 am

Stayci wrote:

GAMZu wrote:

Whatever the source of the delay, it can be helped with therapy.
I'd love for you to PM me the names of the doctors... or post them here. I've been referred to Drs. Kupchik and Pavlakis.

Seraph

Fri, Aug 14 2009, 1:19 am

youngbubby wrote:

My brother was also diagnosed with CP (or likelihood to develop cerebral palsy) at a very young age, had lots of early intervention, including OT, speech therapy, sound therapy, chraniosacral therapy, osteopathy, and b'h he's a very normal 12 year old boy with no physical problems whatsoever. I second that early intervention REALLY helps.

ShakleeMom

Fri, Aug 14 2009, 9:20 am

Like happyone wrote, I also disagree with putting off the EI evals. At this point, your baby will be approved anyway due to the delays. Get started. As the other issues emerge wither with a diagnosis or without, you will then have further direction. Like others wrote above, cerebral palsy or not, the baby benefited! So I hope you made the call, and follow up with the agencies with every piece of correspondence. They are so busy, they often times neglect to call you if a paper they are waiting for never arrived, and then you missed out on another week and then another week…

ra_mom

Fri, Aug 14 2009, 10:00 am

ShakleeMom wrote:

Agreed! Get the therapy, and work on finding a diagnosis at the same time. The two will not contradict each other. Quite the opposite. The therapists point things out for me to tell the specialists that I wouldn't know to point out on my own, and they have been a great help in pointing me in the right medical direction B"H.

Reality

Fri, Aug 14 2009, 5:11 pm

Twizzlers wrote:

Reality wrote:

It isn't as easy to get EI services like it used to be. It is best if your baby's Dr. recommends it first. My baby's Dr. also warned me that once you are rejected from the board of ed. it is harder to get services later on even if your child needs it then. So the first thing that I would do is contact the Dr.

Good Luck!!

There is not much a doctor can do to insure that you receive services. What your acceptance is contingent upon is how much of a delay your child has. This is calculated by an evaluator who comes to your home, interacts with your child a bit and asks you some questions. Ultimately, if she does not rate significantly behind according to the states schedule, she will not be eligible for services no matter what your doctor says.

My mother is a special ed. evaluator. She also has sat in on meetings where the team discusses the amount of therapy the child will be approved for. She has also been there when the mother comes to plead her case. The weight of a doctors recommendation is taken very seriously. many times if the therapists feel it's border line the recommendation of the doctor will weight the decision in the child's favor.