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Begin at the beginning Part 2

November 29, 2007

When we last saw the IT Family, we felt we wanted to have Boy evaluated for suspicion of a developmental delay.  What do we do now?  Parents are so lucky now.  When Little IT was 2, she wasn’t talking.  Hard to believe now that she’s an 8 year old motor mouth, but at that age she had 5-10 words when you should have many more.  Back then, they didn’t have much available about EI on the web, so I used the doctor’s office as a resource.  They had many pamphlets on early intervention and how you go about getting evaluated to receive services.

To back track, Early Intervention (not the caps here) is a comprehensive statewide program to support children under the age of 3 with disabilities, imparements or delays.  It’s a way to provide free or low cost services to help meet the special needs of a child.  EI in NY functions as a single agency that can coordinate services and policies among the several agencies which provide services to infants, toddlers, and their families.

Anyone can refer their own child into early intervention by themselves.  You can also be referred in by a doctor or specialist, or a teacher.  If my doctor didn’t have the info on EI, I might have gotten it from the preschool that Little IT attended.  Of course, it’s not a consistent thing everywhere.  My sister in law who lives in Massachusetts was asking about a program like that at her child’s nursery school and they had never heard of it.  A simple Google search showed me there was indeed an EI program in Mass, so it’s unfortunate that her school didn’t have the resources to help children who might need it.

So, lesson 1, if you have concerns about your child’s developmental progress, or a doctor has suggested it, find out what early intervention like services are offered in your state.  I dug up all the info on Little IT’s programs, and did some Googling to find the regional office that supported EI and made the call.  They are a state agency, so yes, they can be bureaucratic, but at the same time, it is a structure, and structure is what you need here.  They set up a series of phone interviews and determined that evaluators should come and assess Boy for the program.  Net phone time probably added up to two hours.  I selected an agency to handle the evaluation, and scheduled time for the evaluators to work with Boy.  This took place from late December to early January, and was longer than it should have taken due to the end of year holidays.

At the same time, at the suggestion of my pediatrician, I set up an appointment with a neurologist.  Why, I’m still not sure.  Part of it was to make sure that his low tone did not have an underlying cause that needed to be treated by means other than therapy or worse, could not be treated.  This is where the Googling can get you into trouble.  You see words like “muscular dystrophy” and “cerebral palsy” and even cancer when you search for this.  You can easily get yourself alarmed, and is this one place where worst-case scenario planning will not do you any good.  Anyhow, after the neurologist examined Boy, he wrote a diagnosis of HYPOTONIA on a big prescription pad.  He told me that in case EI didn’t accept him into the program, this would help me appeal.  It would also be something to share with the evaluators so it got into the official records for the case.  Not sure if it helped in the end, but I can’t imagine having a medical evaluation going into EI would hurt.

It’s worth noting that at least in NY, Early Intervention is done totally without cost.  There is no cost to be evaluated, and services are provided gratis as well.  That’s one reason we didn’t hesitate to evaluate him.  We knew that we weren’t going down a path that we couldn’t return from, financially or medically, and felt like we weren’t risking anything by going through the process.

After the evaluation by the two specialists, it was decided that Boy could benefit from physical therapy, 2 times a week for 45 minutes a session.  We had a meeting at the house with a representative from EI, the County Board of Health, and the lead evaluator on the case.  We signed enough paperwork to wipe out a small rainforest, and selected a local agency to administer the services.  It would be another week before I was turned over to this agency and we set about finding a PT to work with Boy.

The saga continues – in future blog entries I’ll talk about starting PT, adding more services, and what to do when you think services, or in Boy’s case, the service provider isn’t working out.

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