Other People –

Four things that happened before the May 10th meeting I wrote about in the post “You Can’t Be Neutral On A Moving Train”.

  1. In March, Ward and I toured our neighborhood school where Thorin was scheduled to attend. It looks like the school I had imagined Thorin in – a rambling, brick structure from the 1950’s. We liked what we saw.
  2. We also toured the elementary school an equal distance from our house in April. It was just a year old and had all the bells and whistles you would expect. One that was unexpected is how quiet it was. As quiet as the local school for the deaf and hard of hearing we had visited a few months before. In fact, the school had the same dedicated technology system designed for optimal acoustics that schools for the deaf and hard of hearing had and is now the standard for all new schools in our State because everyone benefits from this technology. This is particularly important to us given Thorin has permanent (albeit mild) bilateral hearing loss exacerbated by fluid. He had a moderate loss that was undiagnosed for two years and corrected by tubes, he didn’t receive speech therapy until he was almost three years old, he lost his two front teeth (try saying anything without your tongue behind your front teeth) and he just started really talking in the last year. Talking for Thorin means saying words a familiar listener can understand reinforced by the use of sign. It had been recommended – by the school of the deaf and hard of hearing – Thorin might need to use a FM system in elementary school given the size of classrooms and the number of people in them. FM technology is a headset between teacher and the student in need. It doesn’t help him hear anyone or anything else. The dedicated system would help him hear everyone and everything. It would help level the playing field for him in a typical classroom. We wrote a letter to the chief academic officer of our district to get an out-of-neighborhood placement.
  3. I met with the Principal at our neighborhood school. I told her two things – we were requesting placement to another school and if we didn’t get it we wanted inclusion at her school. She said I was “only the second parent in twenty-five years to ask for inclusion” – damn this school and their time warp continuum! She also said I would “have to push for it to happen.” That’s what “pushed” us to get an inclusion advocate at the meeting.
  4. We found out the out-of-neighborhood school routinely writes inclusive education plans. Another plus in their favor. Aside from their groovy sound system they believed in inclusion.

The May 10th meeting at our neighborhood school ended up being tabled and scheduled to continue June 5th because we were at an impasse – we said we wouldn’t accept anything short of inclusion and apparently bitchy kindergarten teachers now run schools. From May 12th to June 4th I called the special education strategist from the district, who was at the May 10th meeting, three times and emailed her four to get various pieces of information with no response. My last missive was to get placement to the out-of-neighborhood school written into his IEP (Individual Education Plan or more accurately “what-we-can-get-away-with-giving-your–kid-based-on-how-much-it-will-cost-the-district-plan”).

On June 4th I spoke to the Principal expressing my concern we hadn’t heard from the strategist and told her our request that the placement to the out-of-neighborhood school be written into the IEP. Unprompted the Principal again suggested the new school where students with special needs go for kindergarten and first grade and then are hopefully integrated into a regular classroom in second grade. I wanted to say, “Hey, can I meet you in a hallway something place and cuff you in the head?” But, what I said was, “That’s the antithesis of inclusion.”  She’s clearly tone deaf.

Twenty minutes later the strategist called – after hearing from the Principal. She informed us that we would not get the out-of-neighborhood school written into the IEP based on their awesome sound system because deaf children have attended our neighborhood school and Thorin just had mild hearing loss. Sure, I could have been defeated by this information but I took as useful information. Do not frame the need for the out-of-neighborhood school placement in term of just hearing loss. Mucho gracias, Strategist!

Thanks to the Internet and Al Gore (I jest) and Google I searched “sound field distribution system” and the product name by other issues Thorin has: “distractibility”, “delayed language development”, “delayed social development” and “learning disabilities”.  I found four independent studies that indicated that children with not only hearing loss but these other issues  benefit from sound field distribution technology that is at the out-of-neighborhood school  vs. the FM system available at the neighborhood school.

Going a night without sleep was a small price to pay. Ward collated the information the next morning in preparation for the meeting. I created an agenda for us to present at the meeting. That’s right – we have an agenda. The Peckner’s were on the J-O-B! (Peckner’s is the preferred amalgam of our names)

I had planned my opening salvo that morning to be something like suggesting Thorin attend a segregated school for the next two years when we specifically said we wouldn’t accept anything other than inclusion is analogous to a wife asking for monogamy and her husband offering a second wife to help her with the housework. (Christine who works on my floor suggested that jokes about polygamy probably aren’t as funny as I imagine.)

A friend of mine who is studying to become an occupational therapist interviewed me recently as part of a class assignment. She asked, “What is the most difficult thing about being the parent of a child with special needs?”

It’s the other people you have to deal with on a regular basis. It’s never your kid. Your kid is great. It’s making sure everyone else gets how great he is that takes all your time.

To be continued…

This entry was posted in Adopting, By Notatypicalmom, Down syndrome, education, Inclusion, Marriage, Parenting, Special Needs by Kari Wagner-Peck. Bookmark the permalink.

About Kari Wagner-Peck

Kari Wagner-Peck lives with her husband and son in Maine. She is a writer & storyteller who home schools with her son. She is the author of the memoir Not Always Happy: An Unusual Parenting Journey, May, 2017, Central Recovery Press. She has been published at The New York Times Well Family blog, The Huffington Post, The The Good Men Project, The Sydney Morning Herald Daily Life blog, BLOOM and Love That Max among others. Author page: kariwagnerpeck.com Twitter @KariWagnerPeck and Facebook: www.facebook.com/NotAlwaysHappyLive/ Email: kariwagnerpeck@gmail.com

2 thoughts on “Other People –

  1. Hi Kari, sorry to hear its been so rough. I
    Totally understand what you are going
    Through. We had Maggie’s iep in may and
    I wasn’t sure how it would play out….after
    Much stress, sleepless nights and teeth grinding we got what we wanted! Maggie
    Will stay at Baxter for the deaf another year.
    She will go full days but her morning will
    Be in the preschool and after lunch she will transition into kindergarten at Baxter. Maggie is the first kid to do this and I feel it’s really the right thing for her. Please keep me posted how things are going and Maggie would love a play date! Hugs, amy

    • It all turns out OK. I am making a point about the process of it all as you can totally understand. Congrats! Sounds like a great outcome for Maggie! Yes – play date! We have to get the twins together

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