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A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!

Tuesday, July 3, 2012

Navigating the IFSP

Lauren had her first EI visit today-they only do group therapy four times total over the summer. Afterwards someone helped me fill out the IFSP paperwork so we can started right away in the fall. (IFSP stands for Individualized Family Service Plan)

I asked about school down the road and if Lauren would be able to go to our local elementary school with her brother and any future kids we might have. I could NOT get a clear answer out of her. She said L would probably be in a SN preschool to "get her used to the school environment" and then we can "see if she's ready" to be in a typical kindergarten.

I asked if the local elementary school had SN programs and she didn't say, just said how another school in the district has a program.

Now, the thing is I realize that it might not be in Lauren's best interest to pursue a diploma program but I feel like they're certainly not planning to even set her in that direction- and she's only 4 months old!!!

The woman must've said "least restrictive environment" which is part of a state (or maybe federal) law stating that children are entitled to a free public educationa and must be in the least restrictive environment possible.

I brought up how kids with special needs, like Down syndrome, tend to be more motivated and do better in school and other group situations when with typical peers. She didn't even really acknowledge what I said. I realize we don't really need to be concerned with preschool quite yet seeings how Lauren is only 4 months old, but how our school district demonstrates "least restrictive environment" will play a large role in where we live and if we decide to move within the next few years.

Then I found out that our Early Intervention teachers are not specifically physical therapists or occupational therapists. They are teachers with a broader knowledge. That worries me a little. I asked about if Lauren would get separate PT and OT and they said kids really only get specific PT and OT visits if they are extremely delayed.  Anyone in the special needs community- is that normal? I have nothing to gauge this by and don't know if this is a good program or not!

We are planning to do private PT and OT and have gotten insurance approval for an evaulation and one return visit. We are very much hoping for approval for regular therapy. I'm not sure what we'll do if we are unsatisfied with EI and our insurance will not cover private therapy. Money doesn't grow on trees.

We did get some one on one time with a therapist while we were there and Lauren was SO tired afterwards. That has to mean it was giving her a workout, right? Lauren got to play on a giant foam wedge that helped her roll and she did tummy time on a giant swing! Then she showed us how to do this really great blanket rolling game to help her with rolling over since she can get to her side but can't quite roll all the way. Lauren seemed to like it! But then another therapist said Lauren is way too young for a baby with Down syndrome to be playing that game. The therapist we had started telling her about how Lauren is super close to rolling on her own. It felt a little like they were arguing, which was kind of awkward.

The one thing that had me leaving the meeting with a smile was that we got to meet a family with a baby boy who has Down syndrome! He's two months old and so adorable! Lauren, however, was not impressed with her "first date" and slept the whole time. Therapy wore her out! The family is so nice and they have an older daughter who is 4 and was so friendly! I love kids that like to chat, I told her she looked like Rapunzel and I think I made a friend for life. They had a birth diagnosis and have gotten involved in the Ds community already! Major kudos to them. They told us about a summer picnic for families who have kids with Down syndrome and I think we might go! The problem is that Greg and I are not exactly social butterflies- well I am more than him at least. I wish we had close friends with a kid with Down syndrome- it would make us way more comfortable to have friends with us at events like that!

I'm trying to see the upside of everything and be excited that we're starting therapy. But I left the meeting feeling a little sad about everything. Why should Lauren have to work so much harder to succeed? It's not fair. But, as I often sing to Ryan when he throws a tantrum (and my dad sang to me when I was little) "You can't always get what you want. You can't always get what you want. But if you try sometimes, you might find, you'll get what ya neeeeed!"


  1. it sound like you had a great visit! Try not to worry about school yet, you'll be a couple coordinators in by the time you get there and maybe the next one will be your champion! Cate did the SN pre-K and it was one of the best things we ever did to get her ready for regular kindergarten but you'll know more when you get there.

  2. PT and OT are usually separate evals, in my experience. And not just for extreme cases. A friend of mine has a baby who is just over six months and she has OT/PT services mainly because she ended up with a broken clavicle following her c-section. She also had brain surgery, but at this point, they have NO idea what delays she may have.

    I don't remember where you live, but under US laws, all children are entitled to FAPE (Free and Appropriate Public Education) which includes the requirement that students with special needs be placed in the least restrictive environment. I would agree (granted without seeing her or her skills, and technically my training is with older kids) that while a diploma track may not be the best for her, there isn't any reason why she couldn't potentially be successful in a traditional school with the appropriate supports.

  3. Lisa- I am SO happy to hear that you guys chose to have Cate go to SN pre-K and were happy with it! I feel like we hear inclusion, inclusion, inclusion and it's hard to know when/if it's ever okay to be okay with not going that route.

    Beth- We're definitely going to see how it goes with the LRE stuff once she starts school. If we're unhappy, we'll move. I feel like that sounds crazy but it's true.

  4. My cousin is an OT. He has a facebook page and website --it's called Power Play Pediatric Therapy Center (it's in NJ). If you ever have any questions, email him or facebook him. Even though you're not in NJ he is very knowledgeable and would be able to answer and general questions you might have :)