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6/16/2025 0 Comments

Winning

Today is my first creative writing class. It’s just me and Pete so far. Having a friend with me is all kinds of awesome.

In other news, I am beside myself about the Communication Bill of Rights passing in the NY State Assembly. It is a huge step forward. The Senate is out of session until late in the year. I can’t imagine that it won’t pass because it was unanimous in the Assembly. More and more people who are decision makers are seeing and believing.

One day soon, typing for communication will become standard for all nonspeakers. And I am becoming convinced that that day isn’t far off. I believe now that we will win the battle against the naysayers.

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6/9/2025 0 Comments

The Time is Approaching

I believe that it is happening soon: the tsunami is close to shore. Having part of the spelling world now I can say that I surely believe that the revolution has begun. More and more nonspeakers are coming to places like Mouth to Hand. More and more people who were once skeptics believe in spelling now. There is a change in the winds.

Can you feel it?

All my life I believed I would die with no one ever knowing I was in here. Then Judy came into our lives. I totally was found, because I had been so lost inside here. And now I see more students here all of the time. So many who were lost too are now found and thriving.

People who continue to deny the reality of spelling are so wrong. We are reaching soon, I believe, a critical mass. Soon the deniers will be crushed. Judy always says that the truth can only be hidden for so long. I feel like that point is near, when the truth will explode out and win.

All of us, with all our hearts, are waiting for that moment. I love to imagine that world, where nonspeakers are seen for who we are.

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5/20/2025 0 Comments

New Technology

Last week Judy met on Zoom with a group of people who are invested in helping us with better communication options. The device they discussed is beyond cool. It is kind of a pair of goggles that can read your brain waves. With it, you can think out a sentence using just your mind. The hope is that we can use it to talk, obviously, but there’s more. Firstly, if you take the CP out of the equation, we could prove that we are intelligent and have language. Secondly, can we message pass if we don’t need to use our motor systems? I am sure I can, but I am not sure I’ll be able to tolerate the goggles. As of today, May 19th, Judy is waiting to hear if the company will send someone here to let us informally try them. If we can, then a formal study will happen. I am incredibly excited to see if I can think to talk by myself.

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5/12/2025 0 Comments

The NY State Bill

All of us here at M2H are beginning to believe that times, they are a’changing. We will really believe that things are finally moving in the right direction when the the New York State legislature passes the “communication bill of rights” without discriminating against us.

If you haven’t been following the story, here’s a summary: a bill that was meant to protect the disabled person’s choice of communication method or device got doctored at the last minute as it was coming out of the disability committee. Language was added which flagrantly discriminated against us:

“Each person with a disability has the right to communicate in their preferred manner and no state agency, school, community residence or service provider shall restrict or deny access to a validated communication method. For the purposes of this section, “validated” shall mean that the communication method used is recognized as an appropriate technique that is accepted by authoritative professional organizations such as the American Speech-Hearing Association (ASHA), an empirical support demonstrating that the method results in independent (not facilitator influenced or cued) communication on the part of the person communicating. The methods described in this section shall specifically exclude scientifically unproven or discredited techniques such as facilitated communication, and all its forms, whereby external person may influence the content of communication by physical, auditory, or visual means including, but not limited to, holding the person’s arm while they type or holding a letterboard while the person points to letters…”

The shit hit the fan in the spelling community. Having ASHA determine validity is insane. The organization is completely biased. So the spelling community went nuts - even those who don’t live in this state. My Dad, who runs the Autism Action Network, and Justin’s dad, Tom Abinanti, who was an assemblyman here for many years, immediately started contacting friends in the state government.

How it will all turn out is to be determined still. I am hopeful that at least the offending language won’t pass. Stay tuned for updates.

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4/14/2025 1 Comment

That Day

I am so emotional these days. I am not sure what it is, but I think it may be residual emotion from Alex’s bar mitzvah. Being there that day seemed like it must have been for the people in the bible. The story about Moses seeing God on Mount Sinai is what comes to mind. The feeling we all had sitting there, felt to us like being in God’s presence. It was the most beautiful and emotional thing ever. Being there changed all of us, but me - I can’t stop thinking about it.

For the duration of the service I had zero anxiety, which is crazy because it was a new place. (I always have horrendous anxiety when I go to new places.) All of us didn’t need to stim the whole time. The silence was staggering. And the peace we all felt…there is no way to describe it. I am not Jewish but I wish I could go back to that synagogue.

To put it mildly, it was the happiest day of my life. So I can’t stop thinking about it. What was it that we all felt? Was it the synagogue or was it Alex’s presence? I guess I’ll never know. All my life though I will remember that day.

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4/14/2025 0 Comments

That Day

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3/31/2025 1 Comment

My Party

All my life, before spelling, I always dreamed of being invited to friends’ parties. In my mind I’d picture the invitations arriving in the mail, me opening them, and the day I’d go. I’d also have my own birthday parties. Happily, these dreams have come true. Alex’s bar mitzvah was one of the best days of my life, and this past weekend, I went to Kyle’s awesome thirtieth birthday party. Considering that I was never invited anywhere, there is no way to express how much this means to me.

I am kind of emotional writing about it, honestly. It has made me into a new person, getting invited. Now I am Luke who does get asked to go, and that makes me feel normal: normal people get asked to go to parties. Normal people that are asked to go to parties, in turn, invite their friends. So I have asked my parents to let me have a party of my own.

I want the experience of handing out the invitations, and planning all the food and stuff. I want to ask all my friends, and be there to welcome them. I believe that will be one of the best days of my life. I am going to have it on the beach. And I kind of want it to be a teacher’s appreciation party.

I already can’t wait.

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3/3/2025 0 Comments

In a Mood

Calling the rest of the world stupid is totally too harsh, but I’m in a mood, so I will. All our lives we are faced with being called cognitively impaired. I am so over it. And we as a group probably have IQs markedly higher than normal. But the nature of our disability is that we look weird to outsiders. And our inability to talk means that we are unable to set the record straight. So now we show the world that we are highly intelligent and can talk by spelling and the world’s response is that it’s basically nonsense.

It is infuriating.

It allows them, for intents and purposes, to continue to psychologically abuse us. Can we really fight this? Can we fight the petty bureaucrats in government, who are probably on the take, getting bribed by organizations like ASHA. I wish I believed we could. Having to be completely honest, I have to say no.

As I said, I’m in a mood today.

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2/17/2025 0 Comments

People!

What the hell is wrong with people? The thing I cannot understand the most is putting other people down. I see it in so many ways. ASHA will not even look at spelling, so insistent are they that we are cognitively impaired. What is it that they are afraid of? Is the reason that we will turn out to be smarter than them? I see it in the way that Judy is sometimes written about. How can possibly anyone be better than she is at teaching us to talk by spelling? All of us can talk to her, even those students who work with other practitioners. It absolutely is infantile jealousy, I think. It absolutely infuriates me. I just wish people would not need to put others down to boost themselves up.

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2/10/2025 0 Comments

A Busy Mind

Having things to look forward to lets me forget my disability for a while. There are so many exciting things to look forward to in the next couple of months that keep me from brooding on the negative. The gala in April is the best night of the year, and it’s less than two months away. I am already feeling the excitement building inside myself. And in March I am going to Alex’s bar mitzvah. I absolutely cannot wait.

It strikes me over and over how radically different my life is now. Being able to communicate has changed everything. Instead of the endless misery and fear I lived in, I am happy to wake up every day.

It’s interesting how easy it is to forget I am disabled. It is no longer the only thought I have. My mind is full of interesting things now, like events in the past and future, baseball, conversations, friends, math, poetry, books, and so much more. And when your mind is full of great things, it’s easy to forget the bad stuff.

No longer is my mind only obsessing on one thing: not being able to tell anyone that I am in here. It’s busy and happy thinking about wonderful things.

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