(It’s been awhile since my last post.)

I got into the briefest of pissing contests with another mother of a child with Down syndrome in an on-line forum about ‘inclusion’. (Just eff’ing shoot me now because that may be the most precious sentence ever written.)

The gist of the exchange: she offered a definition of inclusion that was essentially ‘inclusion is putting a kid with Ds in a regular classroom without any support’. I refuted her claim stating there is not any definition of inclusion that says that.

Here is the problem with definitions – they live on a paper. Implementation is where your kid lives.

This post is part of what I thought was a concluded saga on summer school inclusion programs. Basically, we were offered a self-contained classroom for T this summer. (Think segregation.)

We said, “No”.

Later a certain special education lady said, “We have an awesome inclusion program!

I fell all over myself thanking her. ” Hooray!”, I said.  (For the full dets: Pioneer Woman and That’s What She Said .)

The awesome inclusion program we were promised was a crock. Let’s forget an analysis of Day One of the great new program all together.

Day Two I told the one person at the school who seemed to understand what was happening that, “This is a complete shit show.” (Day Two could also be called The-Day-I-Lost-My-Filter-Day.)

She had the integrity to say, “Yes, yes, it is.”

During these two and a half weeks – before we removed him from the program – T became someone we had never seen before. He became angry, unhappy and fearful. He hated school. He described his teacher, ed tech and classmates as mean. T was not T.

I often hear – “You will have to deal with these people for years to come.” Meaning – Be careful. Do not burn bridges.  As my friend Johannah said this past weekend, “They have to deal with you for years to come as well.”

The following are excerpts from our letter to among others the Superintendent of our school system:

Same or different?

Please let this letter be placed in our son, _______________, school file. Our intention is to document that this failure in his summer school education was the system’s failure not T’s. Given the tightening of State regulations on inclusion in public education we never want this episode in his schooling used against him.

On July 15th T, who is scheduled to attend 1st grade in the fall, was placed at ________ with approximately 20 other students entering in 1st to 3rd grade. With the exception of him all were current students of that school. No attempt was made to orient T to the school environment. T needs an iPad with the program – Proloquo2Go an augmentative and alternative communication (AAC) solution at home and school. The teacher and ed tech assigned did not know this and were not able to use the program.

By July 17th we sent an email to the director of special education advising her of our concerns. We were told a consultant would be sent to address these issues. On July 19th we sent another email to the director of special education asking three things: what are the program curriculum; what modifications were being made for T to participate in his education; and what made this program an inclusive setting.

One particularly disturbing fact: On July 15 the first day of class, I had notified the teacher and ed tech T has mild bi-lateral hearing loss. I saw that he had been placed at the back of the classroom facing away from the teacher. Given the noise level in an open concept setting it would be almost impossible for him to hear what was being said. I told both the teacher and the ed tech he needed to be in the front of the classroom and close to the teacher.  We did not find out until the following week that situation was not rectified until the consultant, ___________, read T’s documentation (which was at the reception desk downstairs from the classroom) and instructed them to make the change. Essentially our son sat in a classroom for six days without being able to understand what was being said.

The consultant could not make the ed tech perform the duties she had been hired for or change a dynamic that had a life of its own prior to her arrival. The ed tech was not only unskilled but hostile to the idea of inclusion. She made statements that indicated her unwillingness to see that she was the deficit in this situation not our son. Her comments include: “I don’t know how to work with a Down syndrome person.”; “I think he needs two ed techs.”, “What is someone like him doing in this classroom?” (Editorial comment: I will hate her forever for this last comment.)

A notion worthy of consideration: Inclusion does not occur by placement in the regular class alone; rather it is a desired end-state. It must be created with proper planning, preparation and supports. The goal of inclusion is achieved only when a child is participating in the activities of the class, as a member who belongs, with the supports and services they need (Kids Together Inc., 1996).

But, it has made us even more vigilant in protecting that our child receives the adequate supports needed to succeed in an inclusive education. Our hope for our child is the hope all parents have for their children to be accepted members of society. Part of that acceptance begins in the classroom.

T is going to be in your school system for years to come. We are looking forward to working with all of you.

So, as my mom would put it – Between you, me and the fence post some of the sentiments in that letter are not quite accurate.

More “vigilant” is really code for “I am going to be on you like white on rice for the rest of our son’s public school education.”

I am not in fact looking forward to working with everyone involved. There are a couple people I hope to never again see in this lifetime.

Look for the next and final installment on this story. There is a hero!

This video was posted to my Facebook page earlier today. This young woman says better what I want for our son than I can: Don’t Limit Me!