My Cognitive Brain

MY COGNITIVE BRAIN

BY KEITH MAKAR

Getting to this point, where I can spell relatively easily, has taken the better part of 4 years. It was considerably harder for me than most people. Definitely I am grateful that Judy persisted, even though I am difficult. It is hard for me to control my hand even now, but I can do it.

All my life I’ve been thought cognitively impaired because my mouth has a mind of its own. It babbles idiocy all day. I am not my mouth. I am what Judy calls my cognitive brain.

4/28/2025 0 Comments

My Reflections on RFK's Speech

It is all we are talking about - RFK’s acknowledgement of the autism epidemic, and his commitment to finding out what happened to us. We are so happy that he shone a spotlight on us and our suffering. Now people know we exist and that we and our families need help. He did what no one else has had the guts to do: he said that the epidemic is real and that it needs to end. I want to be cured - or at least to suffer less by having some control over my body. I believe in science, and I believe that if we really tried, we could come up with a solution. He said some harsh truths; but he does need to understand that we nonspeakers are different from those with real autism.

Maybe someday he could come here to meet us. All of us would be thrilled.

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4/21/2025 2 Comments

Rejected!

I got thrown out of my certainly horrible day program…much to my joy. I know it was stressful for my Mom, and I didn’t do anything on purpose, but I am overjoyed.

It sucked anyway.

It is not my fault that they decided that I am too much trouble. I am thrilled that they did though, because it means that I can come here more. Starting tomorrow I get to join a poetry class, and biology. I am excited to start learning new things, and to hang out with friends. I have missed that ever since I got taken out of book club.

Because I am definitely not difficult, it shocked Judy that I got thrown out. I believe that Mom was somewhat surprised. They did not try to accept my issues; instead they just chucked me.

I am so happy.

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2/17/2025 0 Comments

Moms Are the Greatest

Once again my Mom saved me. She read research that said that vitamin B6 can help. So she started me on it, and just like the study reported, after five days I could sit again. My watch tracks my steps. The akathisia had me walking about thirty-three thousand steps a day, on average. After a few days on the vitamin, that dropped to eleven thousand. After five days, it was only four or five.

You cannot imagine the relief I feel. It was like living in hell. Now I’m so calm, I’m positively mellow.

Moms rock.

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2/10/2025 0 Comments

Moms Rock

I am suffering from something that makes me need to move all the time. I know that it is called akathisia, but I am not on any meds now, so we don’t know the cause. I am going insane with it. I am praying that my Mom figures out how to help me.

That our mothers always need to figure out things like this is ridiculous. It shouldn’t be up to them - it should be doctors helping us. But all my life it was my mother who looked for ways to help me. I have no faith in doctors. They don’t live with us, so they don’t know how much we and our families suffer. I have faith in my Mom, though. I hate putting it on her but..she will figure it out.

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2/3/2025 3 Comments

A Shock

When I walked in today, Judy asked me if I want to make a video for an upcoming conference that she is doing in June with a Connecticut organization called Abilis. I responded that I am really not a good enough speller. She looked shocked, and asked me what I am smoking. “Keith, you are a great speller now! You are fast and accurate.”

That astonished me. It was incredibly difficult to master this. I really struggled for years to get my hand to the letters. It made me insanely happy to hear her say that. I guess it never occurred to me that I had mastered this, because it is still so hard for me. It was a revelation to me to learn that I am an accomplished speller. What a surprise that was!

I guess that just goes to show that hard work and a great teacher can work miracles.

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1/27/2025 0 Comments

Akathisia

I can’t sit still. It’s the side effect of a medication; it’s called akathisia. It’s getting better now that my Mom stopped giving me the med, but it’s not gone. Let me tell you, that is one awful feeling. It is hellish.

That’s the thing about medicines. They can definitely improve your life, and they can definitely make it hell. I see others improve and I am jealous. But I know that, like me, they tried tons of different medicines: they didn’t get better overnight.

There are so many medicines in the world. I have to believe that one or more can help me with OCD. OCD is my biggest problem - even more so than being nonspeaking. Being nonspeaking sucks, but OCD is hell. I believe it is the worst thing on earth.

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12/16/2024 1 Comment

The Holiday Party

Yesterday was the annual M2H holiday party. I certainly had a great time, and felt like the holiday spirit filled me there. There was music galore, provided by Tom Tolnay and Stacy Mason, Tyler and Trevor’s parents. Everyone was dancing and eating and having fun. It was awesome, and like all M2H events, was what the world should be like. It struck me that no one cared about disability there. Everyone just laughed and danced badly and acted like nonspeaking is no big deal.

Disability defines us everywhere we go. Life is what my disability makes it. That is why I am so totally into the M2H party. For those two hours I am just Keith: it’s like a mental break. I love that feeling of just being me.

I can’t wait for the gala in April.

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11/25/2024 0 Comments

My Mom

The most wonderful gift I ever received is spelling. I definitely am grateful to my Mom and Dad for never giving up on me even though I can tell that I am incredibly impaired in terms of not only autism but also OCD and motor skills. I think about a lot of things this time of year, and lately I’ve been thinking especially of the way my Mom fights for me. I never want her to think that I don’t notice, or that I take it for granted. I therefore am writing an open letter to my Mom.

I am one of the luckiest people on earth in my Mom. I have some semblance of happiness in life because she gave it to me. I have the ability to write this blog because she gave it to me. I can talk to people today because she believed in me. I love you Mom more than I can say. I am so thankful for you.

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11/18/2024 0 Comments

Christmas has always been my favorite holiday. My family definitely celebrates in a big way. I love everything about it, from the tree to the food to the family. I think the thing I love the most is having my brothers home.

It is at this time of year that I reflect on my accomplishments. It can be hard because my brothers are incredibly accomplished. As I write this, my brother, Brett, is sitting to my left. He is beyond handsome, and is the best lacrosse player in the country. He is everything I wish I were. I can honestly say that he is what most men wish they were.

I believe that my thoughts of envy are ok; despite them, I love him more than words can say. But I do wish I had as much to be proud of as he does. I am incredibly disabled. I definitely have overcome a lot to be able to write this. It was insanely difficult for me, and took years. So I should be proud of myself but…I wish I could do more.

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11/4/2024 1 Comment

No Reason

I am feeling sad these days. My cousin’s new husband was hit by a truck a few months ago in a hit-and-run. He was injured severely, and when he was being operated on, he had a stroke. It left him without the ability to speak or to walk. They had just had their first baby…and I cannot tell you how much my heart hurts for them. His name is Alex, by the way, and he is one amazing man.

Anyway, he and my cousin have temporarily moved to Chicago, so that he can be in one of the best rehab centers in the country. I am in total shock still that this happened to him. It breaks my heart to know that they are suffering.

I’ve been thinking a lot recently about how some people seem to have good luck, and others not just bad, but horrific. I’m not sure I can fathom a reason for it. It makes no sense to me that good people often suffer while bad people don’t. I know that some people say it’s God’s will…but I still don’t get it. This summer was hell for my family: I guess I just wish it was all for a reason.

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