Down syndrome IEP - 6 years old (transition to kindergarten and public school)

Here we go again. I can't believe a year has passed! My son will repeat kindergarten, but he will move to public school in the fall.

So, here is the IEP process this year at a glance.
  • the school did the 3 year evaluation. They proposed evaluating for Speech, OT, PT, Education, and Psychological. We rejected Psychological (it's no mandatory in our state), but asked for Observation of the classroom, Social Pragmatics, and Augmentative communication. 
  • we've got the evaluation results which were all over the place: good reading skills, poor math, good receptive language, poor expressive language.
  • a meeting was scheduled to discuss the evaluation. We did not expect this, but this meeting ended up being the actual IEP meeting. I'm not sure if this is how is supposed to happen. Because of this we did not get the chance to send our usual pre-IEP document. The meeting was good, except when we asked for extra support for my son in the classroom. The school proposed placement in an inclusion classroom with a teacher and a classroom paraprofessional. We also requested 1:1 support from a special education paraprofessional. The school said no. They did however offered 1:1 transition support outside classroom (lunch, specials, recess)
  • we received the first IEP proposal. In terms of services my son will get 3x30 speech, 2x45 PT, 3x30 OT, 2x30 direct teaching math support, 1x30 direct teaching reading.
  • we sent our comments to the IEP and again asked for special ed paraprofessional support. The school again said no. We partially rejected the IEP. At this point we really believed that our son needed at least 1:1 support during academics especially writing and math. We hired an advocate (for the first time) and scheduled a new meeting with the school. I think our requests were completely reasonable and supported by the evaluation reports, which really showed my son behind in the areas we asked for additional support. The school agreed to 1:1 during academic instruction, around 10-15 hours per week.

So, in September my son will start Kindergarten placed in an inclusion classroom with at most 20 kids (at most 5 on IEP). There will be a teacher, a part-time classroom paraprofessional (morning to noon) and a full-time special education paraprofessional which will offer 1:1 support during academic activities and transitions outside the classroom.
All in all, the process, which took 6 months from start to finish, was very stressful but I think we are in good shape for our first year in public school. 

Agreed upon Service Delivery
Speech Therapy - 3x30min/week
Physical Therapy - 2x45min/week
Occupational Therapy - 3x30min/week
Math Direct Teaching - 2x30min/week
Literacy Direct Teaching - 1x30min/week
Our usual IEP process - 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. We send our comments and requests for modifications in writing. If they can be addressed without a meeting, we receive a second IEP draft. This iteration receive draft/comment on draft continues until we accept the IEP.

See:

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.

Sight reading update

My son is 6 years old. As I've mentioned a long time ago, we have been teaching my son sight reading. It was a very long journey since we started 2 years ago, but my son is doing amazingly well. He is currently (sight) reading level B books. So, please, know it works. It takes time and for the first year we have been practicing every single evening. Usually for no more than 5 to 10 minutes. These days we are aiming for one or two books every day.

We recently had our 3 year evaluation (part of the IEP process) and my son scored in 90 percentile for word recognition. How cool is that? The IEP team was truly impressed - the 6 year IEP coming soon! This couldn't have come at a better time as we are transitioning to public school kindergarten.

Check out Natalie Hale's book: Down Syndrome Parenting 101: Must-have advice for making your life easier. She does a really good job explaining why sight reading is important for our children. Teaching my son to read at a very young age was probably the best thing we did for his education so far. 

Here is what worked for us:
  • the Down syndrome learning program strategies - match, name, select. The materials are free and they work!
  • the "Special Words" app, based on the same match, name, select strategy. Many of the same words from the DS learning program materials.
  • practice, practice, practice! Every day for almost two years.
  • we graduated from the learning program materials to Scholastic leveled books: First little readers level A, First little readers level B, soon to start First little readers level C.