The First IEP for My Child with Down Syndrome

When I learned that Gigi was going to be born with Down syndrome one of my very first concerns was about school. Our two older children were attending parochial school, which I assumed wouldn’t be a good fit for Gigi. In fact, I couldn’t wait to meet with a local mom to ask her how school was going for her 10-year-old daughter with Down syndrome. And I did meet with her only to find out that she was part of the school system in the next town over because her husband worked for it. From that moment on I kept my eyes and ears open regarding the whole process of getting Gigi into school, only to hear things like “IEP’s are the worst”, “the Boston Public School System is a sh!t show”, “Get an advocate now”, “Don’t visit schools, it will be a waste of time”.

We don’t live in a small town where there is only one option for school. The city has a lot of different schools so it made me feel like I had to research them all and eventually fight for the one I thought was best. So against the advice I was given, I visited schools just to gain some sort of knowledge as to what we were potentially getting into. Mostly it was to make me feel like I was doing something and that I had some sort of control over this process. There wasn’t much more that I could do and the rest was supposedly somewhat out of my hands. I was to wait until Gigi turned two and a half until the ball really starting rolling.

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Before I knew it age three was on the horizon for my little baby. How could that be? Maybe it was hard to believe because she still wasn’t walking. Or maybe it was simply because the time flew. Boston Public School (BPS) contacted me to schedule the dreaded IEP meeting. The meeting that I heard nothing good about.

IEP is short for Individualized Educational Plan and is defined as a plan or program developed to ensure that a child who has a disability and is attending an educational institution receives specialized instruction and related services. In preparation for the IEP meeting BPS had their therapists observe Gigi in her playgroup. This wasn’t just a therapist or two, it was six – a speech therapist, developmental therapist, physical therapist, occupational therapist, psychologist, and nurse. There was also a coordinator who supervised.

There were a couple of issues going on at the time. First of all, Gigi wasn’t walking. She was also going through a phase where she’d cry for a while when I dropped her off at her weekly early intervention playgroup, which was the location where the therapists would observe her. Lastly she needs to be watched when she eats because she stuffs her mouth with food. But BPS worked with us. One specialist even came to our home to evaluate her so that Gigi was in a more comfortable setting.

There was open communication throughout the process and they all fell in love with her. I got to know these therapists as they didn’t observe her just once but multiple times to really get an understanding of who Gigi is and what her capabilities are. In the end I was blown away at the amount of time spent understanding Gigi so that when the day came, the dreaded day of the IEP, I didn’t cry from stress like I thought I would. Yes it was nerve-wracking as I couldn’t get the IEP’s bad reputation out of my head, but it was a successful working meeting where Gigi’s parents, current therapists, and therapists from the public school system came together to find the best fit for Gigi. And they found a great inclusive school for her (more on that later).

The IEP included very detailed measurable goals for her development during her first year of school, such as she will increase her expressive language skills 80% of the time. The IEP also included specifics per the nurse, for example she must be supervised at snack and meals and she must have her hands washed before she eats. Trust me, I didn’t initiate that one but I was happy to have it in the plan. IEP meeting a 100% success!!

In speaking with other moms that I’ve met across the country, I see that first IEP meetings sadly don’t always go this way. Here are some tips that worked for us for a smooth and successfully IEP meeting:

  • Keep the lines of communication open – I was open from the very beginning that I wished for an inclusive setting for Gigi but would like their input and expertise as well.

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  • Make sure you have a vision statement ready – During the meeting we were asked what our vision for Gigi was. We already had a 1-pager all about her. This 1-pager idea is the creation of a fellow mom named Tiffany who initially made this for her daughter. Tiffany blogs about it here with detailed instructions.
  • Don’t bring an advocate right away – This was advice given to me by an early intervention professional who has sat in on many IEP meetings. I agree, bringing an advocate in the beginning can be seen as confrontational. Only introduce one if the initial meeting doesn’t go well.
  • Don’t sign the IEP right away. Take it home and read it when you can fully go through it.

It’s unfortunate that not all initial IEP meetings go smoothly. The good news is that some go very well, as in our case. Some don’t deserve that bad reputation.

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