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12/16/2025 1 Comment Holiday MusingsThe time seems to be flying. It feels like time moves faster and faster. It was just the summer and now Christmas is next week! I love Christmas. It always feels totally good - like love. I go to my family’s houses and eat and eat. That is the kind of day I love, spent with my family. I am looking forward to it more than I can say. This past year was great. I am so much happier than I used to be. I look forward to waking up each day because there will be moments of fun and laughter, and I will learn something new and interesting. I am not just slogging through life anymore. The thing that has people totally excited is all the amazing things that are happening in the world. It was only a few years ago that we were in Judy’s basement. And that blossomed into this absolutely wonderful community. It totally makes you wonder what the next few years will bring! 
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11/4/2025 1 Comment The Brain-Heart DisconnectHaving autism gives us a different perspective on things. Call me crazy but, most of our lives are spent listening, not talking, so we are scary good at it: we hear many things about which you all are unaware. Appearances can be deceiving, because often we do not look like we are paying attention. But we are. I have noticed that believing we are intelligent or not comes out in conversations you are having. All of us are sitting together in the Center downstairs, and we are listening to you. Having to talk for us makes it all too easy to slip into babying us. You are probably unaware that you are doing it. We hear it though and it hurts because it shows that deep down, you still see us as cognitively impaired. It’s like you know we are not, but you don’t believe it in your heart: it’s the brain-heart disconnect. Please everyone: be aware of what you are saying. And stop thinking of us like we are unable. We can understand - we just can’t control what our physical body is doing.  7/28/2025 1 Comment Medicine Journey: #1My parents finally took me to see a psychiatrist at my insistence. Dr. Minhas was awesome. The thing is that finding the right medicine is a long and difficult process. The one he tried is not helping my OCD at all and worse, it’s not helping me to sleep. I am up half the night being insanely OCD. I am just exhausted all the time. But I am not losing hope. I believe he will help me and am very patient. I love seeing the guys he has already helped: it helps me to stay positive. I see a lot of my friends getting better and that is very inspiring. I can see that it is a slow process often. But all of his patients here are doing great or are improving. So how can I lose hope? I will write periodic updates.  6/4/2025 2 Comments Amazing News!I got good news this week. My Mom was declared cancer free! I still can’t fully believe it. It has had me in such a continual state of anxiety these past two and a half years. I don’t even know how to fully absorb it. I think a part of me was so scared that I’ve been frozen. I think I was sort of preparing myself for the worst, unconsciously. To have that weight gone feels like a million pounds has been lifted off me. Now that Mom is well, I want to address my own issues. I want to see a psychiatrist for OCD and sleep. I want to see a weight-loss doctor. These are my own goals that I had to put aside for the sake of Mom. I am looking forward to a time when Mom and I are both healthy.  4/30/2025 0 Comments My LetterI just learned that Secretary Kennedy actually read my letter to him. That has me reflecting on just how far I have come in the past three and a half years. When I first met Judy I was in the clouds, paying attention to nothing. I barely remember the first 25 years of my life. Now here I am, having my words read by a member of the cabinet. The changes in me, and my life, cannot be overstated. [letter below] Not only do I now have a voice: I have friends and am getting an education. The old me was like the living dead; I am now one of the happiest people on earth. I now look forward to my days instead of sleepwalking through them. I feel like things are changing for the better for we nonspeakers. I am not sure why I feel that way. Maybe it’s that more and more people are hearing about spelling for communication. Maybe it’s that every day, someone new starts to talk now. Maybe it’s the promise of new research. But whatever it is, it has me feeling really upbeat. __________________________ Open Letter to Secretary Kennedy: Dear Mr. Secretary: I feel compelled to write, to speak for those who cannot. To have nonspeaking autism is to suffer each and every day of your life. To not be able to talk is a kind of hell on earth. I am incredibly lucky to have learned to spell for communication. Almost all my life I was trapped inside this body. It was unutterably lonely, to exist but to be known by no one. And most nonspeakers live in that unbearable loneliness their entire lives. On top of that, we all have OCD and anxiety, which is its own kind of hell. There are two battles that we in the nonspeaking community must fight. You covered the first in your speech last week. I am nearing my thirtieth birthday, and we still have nothing to help me. The other battle involves the argument over the use of letter boards to allow us to communicate. Our poor parents spend their entire lives caring and fighting for us. We are highly intelligent and understand only too well how the world sees (or more accurately, doesn’t see) us. But those loud voices you hear from the speaking autism community are not our voices. Ours are silent, spelled out one letter at a time. And those of us who can spell to communicate are only a tiny minority of the nonspeaking world. But we are spelling loudly now. We want to know what happened to us and we want to be cured. Thank you for being our champion. Sincerely, Rocco Cambareri  4/16/2025 1 Comment The Last Three WeeksI am still riding the high from the bar mitzvah service and the gala. I have been thinking about both a lot. In the case of the gala, it’s always the best night of the year. Everything about it was abundantly extravagant. I loved the decorations, and the silent auction. I loved seeing everyone so dressed up. Certainly the presentation was the highlight, of course. Judy looked like a queen up there. And that moment when your photo comes up is just the greatest. It is wonderful to feel proud, and to know that you are a member of the most wonderful community on earth. In a very different way, the bar mitzvah has deeply affected me. It is very difficult to explain how we all felt sitting there that day in the synagogue. It was, in part, that one of us was accomplishing the impossible. Certainly I was very emotional about that. But it was more than that. Typically when we get excited, our bodies get more dysregulated. But the opposite happened: we were completely at peace in our own skins. Instead of heightened emotion leading to an increase in OCD and stimming, our OCD and stimming vanished. I myself did not stim or OCD even once during that service. You could hear a pin drop in there. How did I feel? Like I was wrapped in a warm, soft blanket of perfect love. It was so wonderful that there are no words that can adequately describe it. I feel changed by that experience. I know now that God exists. And the world seems more beautiful because of that.  3/26/2025 0 Comments Alex's Bar MitzvahThis past weekend I went to my best friend’s bar mitzvah. It was the best day of my life. The service in the synagogue was calming in the extreme. I don’t think I can describe just how regulating it was. My body and mind were completely relaxed. I am sure it was because God was in that synagogue. It was a feeling of such serenity and peace that words fail me. I can only say that it felt holy and beautiful, and I hope I feel it again. I loved it more than I can express. Alex was amazing. He stood there by himself the entire time, his body completely calm. When he typed the Torah and Judy chanted for him, I was crying inside because it showed that nonspeakers can do things all believed impossible. And his sermon was certainly the most beautiful thing I ever heard. He compared the building of the tabernacle to the building of M2H. The generosity of the Israelites allowed God to dwell within the tabernacle to be among them. Alex actually needs to become a rabbi, because when he pointed out that God dwells in places that are built with love, I almost burst into tears. Teaching the world about love is Alex’s calling. The synagogue is definitely my second favorite place. It felt like the love there was similar to the love at M2H. Everything about that service was perfect. I really hope I can go again even though I am Catholic. I am not exaggerating when I say that God was there.  3/12/2025 1 Comment Happy NewsFirst, an update: Mom is home! She seems pretty good. I feel such relief, there are no words. She has to recover now, but the worst is over. I am totally happy. I also wanted to comment on the process of blogging. It is not just “fun” - which it is. It is also therapeutic somehow. It feels like I am talking to friends. I am loving this, actually, because it helps me calm down when things are hard. When Mom was gone to get treated, writing about it helped me to feel less panic. I am very calm now and this writing definitely played a part.  3/5/2025 0 Comments Week 4It’s now into the fourth week since Mom went away for treatment. It feels like forever. I know she is doing as well as can be expected, but I still worry because she has cancer, and that is scary. The worst part for me is the uncertainty. We won’t know for a long time if it’s working, and that is very hard. Control helps our anxiety and OCD. I am certainly OCD these days because of the situation. So I can’t wait for Mom to come home, hopefully next week.  Well, it’s week 2 and Mom is feeling pretty rough. On top of the treatment for the cancer, she got COVID. I am pretty crazy with the stress of it. My OCD is raging. I do find that being with Judy is calming. But when I’m not with her, I’m a lunatic. Still, for Mom’s sake, I am trying to stay calm. I am not good at regulating my emotions though.  |
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