“An Ode To My Silent Self” – We Are Going To Be OK

“I love this.”

Stone smiled and spelled this out in the middle of his first pre-algebra class last Tuesday. (PHOTO).

Yes, Stone is taking pre-algebra now.

There is a lot to catch up on since my January post and update regarding Stone’s progress with spelling and the profound impact it’s had on all of our lives. It’s much too much to cover in a single post but I’m going to try to hit the highlights.

I’ll start first with school and his education. We were initially hopeful and optimistic that Edmonds School District and his team at Edmonds-Woodway High School would be as excited about Stone’s newly discovered capabilities as we were. And I expected that they would be eager to adopt Spelling and the letter board into his education. Unfortunately I was very wrong.

There was a special IEP meeting in early March to discuss our request for a letter board in school and next steps for Stone. The district’s response was led by the school’s speech therapist and she immediately stated that she didn’t support S2C because her professional association (ASHA) is publicly against it. I was aware of ASHA’s position against Spelling as a form of communication because I had been given a copy of the positioning paper soon after Stone and I began spelling together. You can read it for yourself. The language used is alarmist, misleading and incredibly offensive to any person using Spelling as a form of communication.

I told the group that I was aware of ASHA’s position but our own experience with Stone and Spelling showed that he was capable of independent communication and he required a letter board to communicate. I provided examples of videos I had created – going through various lessons and showing his capabilities in different areas – as well as his stated desire that he wanted to study real high school level curriculum.

The school vice principal stated simply “we will not allow letter boards in school and will follow ASHA guidelines.” I then asked what accommodations they would make with Stone’s curriculum. His special ed teacher’s suggestion was to have him spend the day using an online learning platform designed for elementary school students. The speech therapist said they would order a special keyboard for Stone to use in class that had larger keys and a different layout.

We went through a couple weeks of school nonsense – delays in changing his schedule, giving him access to the online portal and the keyboard never arriving. In the meantime, Stone was literally begging not to go to school – he said it was far below his capabilities and he wanted to stay home to learn. He also was able to reveal that he was the target of bullying.

We had enough and pulled him from school. We knew that we could do more to help him learn at home with online resources available than what he was receiving at his school.

But the fact remains – Stone has a legal right to a free appropriate public education. It’s often called FAPE (which rhymes with cape). And he was being denied this right by EWHS and ESD by their refusal to allow the use of his letter boards in school. Renee and I reached out to a law firm that specializes in education law, explained our case and hired them in short order.

Our attorneys have helped guide us with the school district and it’s request for a new set of assessments with Stone to determine what accommodations he requires (and they have to provide).

The first assessment meeting was hosted by the Speech Therapist at EWHS and was attended by her intern as well as a school district Occupational Therapist, who would be doing an OT assessment later.

We opened the meeting with me asking Stone if he had anything he wanted to say and he proceeded to spell:

“The day I left Edmonds Woodway was the happiest day of my life. It was toxic.”

I asked him if he wanted to say anything to the school Speech Therapist specifically.

“I want to know if she realizes that I am too smart for intensive ed.”

She looked stunned and initially didn’t respond. I said that it was up to her to answer that question and she said something along the lines of “I think you could do well in some general ed classes like history or even art.”

To this, Stone responded:

“I don’t want to go to school here. I really respect her but I expect to learn more.”

I explained to him that this was an assessment that they had to do to update his IEP and that she would be asking some questions to better understand how he uses the letter board.

We completed that assessment (too much detail to share here) and later returned to the school for the OT assessment.

In the meantime Stone and I had been researching/visiting potential alternative school options for him – both within the district and outside. Our attorneys connected us with Brightmont Academy in North Seattle. The school provide 1:1 instruction for students and had extensive experience educating students who were on the Autism spectrum.

When we visited the school I made sure Stone was able to interview the VP of Admissions as well as answer his questions himself. One key issue was whether they would allow and use letter boards with Stone – and after seeing how he uses it they said it would be no problem. After the meeting Stone was thrilled and said he could see himself thriving there.

And now we’re proud to say that he is officially a student at Brightmont Academy. He had his first two classes last week: Environmental Science and Pre-Algebra. I’ve been attending with him to help him adjust to the new experience as well as serve as his communications partner. Both teachers are willing and eager to learn how to use the letter boards with Stone – they already had them in their classrooms ready for use. We’ll soon be coordinating a training session with Stone’s Spelling practitioner so that I can go back to being a parent waiting for him while he’s in class – and giving him his much-needed independence.

Stone and I were featured tonight on KING-5 News as reporter Eric Wilkerson reported on our issue with the school district. He did a fabulous job. We had prepped Stone ahead of the meeting/interview and explained that this was his first opportunity to serve in a role he’s said he wants: as an advocate for non and unreliable speakers. And of course Stone shined.

There is so much more to share but suffice to say that life has been a whirlwind now – for mostly the right reasons. Stone has been attending weekly Spelling sessions with his amazing practitioner Meg – and has been making great progress with his spelling and accuracy. He’s now moved from stencil boards to a laminated plastic sheet and is on his way to eventually transitioning to a keyboard. The timeline for these transitions varies for each speller but Stone has shown a great proficiency and has rapidly advanced through each stage faster than average.

I’ll close this post with one last inspiring/amazing experience. Stone had indicated to Meg that he was interested in poetry – so their lesson together yesterday was focused on that entirely. They covered the different types of poetry and at the end of the lesson, finished with this:

Meg: If you were to write an ode, who or what would it be addressed to and why?

STONE: AN ODE TO MY SILENT SELF. THIS WOULD BE A MESSAGE TELLING HIM THAT WE ARE GOING TO BE OKAY.

Meg: Well then, I think you should write “An Ode to My Silent Self”!!! (An ode typically has ten lines, no formal structure, and it can or doesn’t have to rhyme. Go for it!

On his own he immediately penned the poem I’ve posted here. It blew me away that he was able to compose something so profound – and perfect – off the top of his head. Yes he’s our son and we’re obviously so proud of him but this was another reminder that we’re still just at the tip of the iceberg when it comes to his capabilities.

The best is yet to come.