Down syndrome IEP - 5 years old

We had a good IEP meeting. Our son made a lot of progress in all areas of development. We are really very proud of him. The main concern is his expressive language. He has definitely made progress, but expressive language is way behind receptive language, cognition, social skills, gross and fine motor skills. It breaks my heart to see him so eager to communicate and so frustrated with the results.  Mostly he uses a combination of spoken words and signs. At home he is more than able to let us know what he wants, to make comments about what’s going around, to negotiate more TV and extra ice cream, to be silly and funny. We understand about half of his speech. Strangers have a very hard time understanding him and communication with peers is hopeless. We probably made a mistake last year agreeing to pull out sessions for a big chunk of his speech therapy. He made progress in structured sessions, but progress did not translate to class skills. On top of that, even when he makes attempts to communicate in class he mostly whispers.

So, a couple of decisions: (1) he will start kindergarten in the fall, (2) he will spend two years in kindergarten (our decision, he barely makes the cutoff as it is and we want him to really improve his speech before school), (3) all speech service in class, (4) speech activities will involve peers on a rotation basis, (5) additional consultation between speech therapist and educators. 

For his receptive language goal it was decided to work on similar objectives like last year, but this time targeting spontaneous language rather than language in structured activities. If you look at the last year IEP, the expressive language goal explicitly states that language progress is targeted in structured activities. It annoys me that we did not catch this; it seems almost like a trap.  

There is no post IEP communication because we did not have a lot of comments. The IEP was very close to what was discussed during the meeting – we had some email communication and requested small changes which required the school to compile and send a new draft, but it was mostly straightforward. However, post IEP communication is very important, so take a look to the one from last year, when we had more serious issues with what was proposed. 

Again, there are no academic goals, still out-of-district placement. See a previous explanation here. However, you can get an idea of how academic goals might look like for a 5 years old by looking at our parental input to the IEP linked below.

Before the IEP we sent the team our parental concerns. This is a practice we intend to keep. Letting the team know before the meeting what are our concerns and expectations. Usually two weeks after the meeting we receive the first IEP draft. If we have any comments, we send them in writing and wait for a new draft. If not we accept and sign the IEP.

For details see:

• parental input to 5 years/kindergarten IEP - sent prior to IEP meeting
• accepted IEP

I'm putting a lot of thought/effort/time into my communication with the team, especially during the IEP season. In fact, I think that spending time getting the plan right it's saving me a lot of time during the school year. There are a couple of books that I found particularly useful during this process.

• Wrightslaw: All About IEPs - pretty much the IEP bible; an incredible useful book, especially if you are just starting this journey. Good to have it as a reference too, because the issues and questions change every year.  
• Wrightslaw: From Emotions to Advocacy - The Special Education Survival Guide - one thing we need to understand as parents is that the special education process is driven by data and not by emotion. It is not about the perfect plan, it is not about the best outcome, it is not about reaching the maximum potential. It is about about fair and appropriate services. I think this book does a good job in helping parents understand the difference. 
• Getting to Yes: Negotiating Agreement Without Giving In - amazing book, that I've read several times. Related to how to negotiate without emotion. Putting yourself in the other person shoes and finding the best outcome for everybody. Works in every aspect of our lives. Gives you power and keeps the process  non confrontational.