Gut instincts

We all have them. We all live by them. As a mom of a child with special issues I have learned to embrace them.

We had phase 2 of our IEP/Kindergarten placement meeting yesterday. It was a bit overwhelming. If I recall the faces correctly we had 9 school reps. Our current teacher and speech path. The Special Ed Coordinator for birth to 5 kids. The Special Ed Coordinator for the elementary population. The principal at our new school as well as the psychologist, speech path, resource teacher and JP's actual Kindergarten teacher. I went in intimidated and worrying that it was going to be 9 of "them" and 2 of "us".

However, it really felt like 10 of us and 1 of them.

First I must say that I love our current teacher and speech path. They truly understand what makes JP tick. And it is so obvious that they adore him. They talk about his quirks as though they are precious and not "problems". They stated over and over again that he can learn if we break it down into components that he can process. They talked up his response to social stories. My favorite quote went something like this... "I've done social stories for children before. But with JP it is like, "so this is how they work!""

As a mom, the hardest part about turning over your child is that you need to feel that they are being loved and cared for. Without a doubt, JP has been in amazing hands this past school year. We are truly going to miss Mrs. T and Mrs. D.

A few months ago I met with the principal, psychologist and speech path at our new school. We talked about JP and my concerns. They were very receptive. I was encourage but true to my cynical self I held back hope. I know that nothing is locked in until it is written down in the IEP. So my first gut instinct was positive but I refused to listen to it until everything came together.

Well, yesterday it really came together.

Now, I did request a 1 on 1 paraprofessional. I did not expect to get that. But I truthfully didn't even think we really wanted that. What I want is support and I want to know that they are legally bound to providing that support. But I don't think JP needs someone to hold his hand. He does however need someone to nudge him from the shadows.

Now, there is a bit of unease still because although we have a plan in place we are scheduled to meet after 4 weeks of school to reassess. I think they hope to reduce supports but I sort of fear we may have to commit them long term at that point. Hopefully we won't have to increase them but we are all looking at this with a "wait and see" attitude.

So here is the issue. We were gearing up for the discussion about supports so I chimed in and asked for a few minutes to speak. I expressed that since much of the team before us had not met JP and witnessed his progress I would like to show them what his past couple years have been like. I explained each "therapy" and how each and every one of them utilizes one on one adult attention. I reinforced that I am not here today to demand 40 hours of ABA like many autism parents request but I wanted to show what kind of structure we had to provide to get JP where he is at today. Here is a visual of JP's current schedule. Unfortunately, I don't think my graphic scanned in very well.

I then expressed my concern that now that he is in Kindergarten all day we won't be able to continue these afternoon therapies. I'm not "attached" to these particular therapies but I do firmly believe that JP needs this much of one on one involvement. Here is how bleak his Kindergarten schedule looks!

Taking those 30 hours out of his weekdays takes away the opportunities for us use most of these services. OT, the speech group, and the college clinic are all day time activities. They won't be available anymore. Ultimately, I can figure about 5 hours we will be able to continue.

I didn't come right out and say it but my point is that we (I repeat WE) have stepped up and provided JP the services he needed to keep him engaged and growing. Now that he is in all day school, the school MUST step up and do their part!

I also illustrated the progress through our years post diagnosis. JP was diagnosed in the fall of 2004. In January of 2005, he started in an early intervention classroom. He spent 5 months in a class of 10 special needs kids, one teacher and 2 paras. At the close of that semester, his IEP was drafted with a language goal of stringing 2 words together. That summer we started a home program pulling goals from an ABA manual. We hired college students as well as providing the therapy ourselves. Towards the end of the summer we adopted the ABLLS (verbal behavior program) and took off running.

When we returned to school in the fall I requested a new IEP as the old one was not appropriate. JP's language had grown tremendously and I wanted our goals to reflect his new levels. We found that he was stringing 5-6 words together at this point. Here is my data to show his level in August of 2005. He was3 years 8 months at this point.

We continued in the same classroom through the 2005-6 school year with the same teacher. (I should note that I requested a transfer to a different teacher but it did not get honored due to staffing changes in the main office. Technically, our request fell through the cracks.)

Sadly, when we met in the spring of 2006, the IEP goals were still considered to be "in progress". So despite having the entire school year in a special education classroom JP had not mastered his list of 8 goals.

However, during that same time here is the growth we can document from our home program. Here is his ABLLS update as of April 2006 when he is chronologically 4 years and 4 months.
If you aren't familiar with ABLLS, each box on the graph above is a measurement for a task. To illustrate here is one of the more advanced receptive tasks:

Task C41: Select single items with two specified characteristics. Can the student select a specified item which has two specified characteristics (The big red ball). All 4 squares on the graph (for task C41) will be colored if he can do 20 combinations, 3 squares will be filled in if he can do 10 combinations, 2 squares if he can do 5 combos, or only 1 square if he can do atleast 2 combinations.

(**As a note, James Partington who created this program recently commented that this chart would likely be completely filled in for a typical developing 3 year old**)

Then we received placement into Mrs. T's classroom for the 2006-7 school year. This was an integrated preschool with lots of socialization opportunities but also a great teacher! We have continued our home program although much more modestly. Truthfully we ran out of money. I still have one college girl working for us but she only comes once a week for 2 hours.

As you can see on the above schedule much of his current therapy is outside the home.

Here is is latest assessment as of February 2007. He was 5 years 2 months.

At this point I got off my soap box. I had made my point. I have data that my son can learn if you teach him appropriately.

Here is what the Special Ed Coordinator for the Elementary population said, "Well, I don't have a problem if you want to put him in school part day and continue your therapies in the afternoon."

It took me by surprise because everything had been amicable and the school staff seemed excited to roll up their sleeves and start working with JP. I take her comment as a corporate type who is looking at the cost to supply this one on one attention. I understand that...but I also understand that it is their job. I regret not taking the discussion down the FAPE and IDEA route but I didn't feel that it was completely warranted at this point. However, my gut tells me that 4 weeks into the school year we may need to be prepared to go there.

However, my gut is also telling me that it is in fact, 10 to 1. Everyone else on our team was amazing and seemed committed to make Kindergarten successful for JP. I am optimistic!