When Your Child Has No Words

Every night, like clockwork these days, I hear the sounds of my son as he begins the cycle of waking up. It starts around midnight. Then on and off for hours, he wakes, then goes to sleep, then wakes. During these times, I feel the deepest of my sadness that my son doesn’t speak. Most people would assume that a 5-year-old should be able to call for their parent, ask for a drink of water, or say they had a

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Performance Masquerading as Advice Helps No One

“He should have access to his voice at all times,” she wrote.  Out of context, it would be hard to know what to make of a statement like this, but I think most of us would be inclined to think it is correct, or good advice, or at least true as an aspiration. Unfortunately, in this case, it was more like a weapon. I should have expected it. After all, the internet seems to spawn a whole population of individuals

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Missing Puzzle Pieces

My son is like a puzzle. One with no directions, no picture, and guess what, it’s missing a piece – or in his case 3 pieces. Sure, we know where the missing pieces are, or should I say aren’t, but it impacts other puzzle elements as well. There are days I look at my son, and I wonder, does he know he has an itch? Do you ever have an itch and think about it? I do, now, at least.

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Hypotonia – Weak Muscle Tone

The first time I heard the term hypotonia, it didn’t even register. I focused on the shots and answered questions at that checkup when our pediatrician uttered a word I never heard before. I must have missed it. After all, humans do that. We use context clues, and if the word doesn’t seem too alarming or concerning, we tend to assume the meaning and move past it. My husband heard it, and he must have started to do research and

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An Outcast In My Own Family

One night I was sitting on the floor near my son as he rolled around chewing on a book, and I realized the rest of my family was laughing and having fun at the kitchen table. It was the odd moment where my life sort of flashed by, and I realized I always was the one to step back to “do the right thing” so others could enjoy themselves. I was the one who left early to get a child

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It’s Okay to Not Know How I am Feeling – and Still be my Friend

What kind of friend am I? I am always busier these days. I have children, so I can’t do anything for myself during “normal” hours. I’ve moved three time zones from one set of friends, two from the next, and I somehow need to make new friends where I live now in the middle of a pandemic. I don’t want to be a bad friend, but the deck is stacked pretty high. I am busy, stressed out, my life consists

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Mile Markers: A Rett Syndrome Diagnosis Story

Community Submission by: Leslie Mehta Leslie Mehta is an attorney. She lives with her husband, Tarun, and two daughters, Brooke and Blair, in Richmond, Virginia. You can follow her advocacy journey at www.prettybrooke.com, on Facebook at pRETTy Brooke, and her YouTube channel of the same name. I met Tarun Mehta in law school. Five years and several bar exams later, we married near my small North Carolina hometown on August 11, 2007. Rarely did we discuss having children. We were

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A Tourette’s Diagnosis

Community Submission by: Kelda York Kelda York is married with three children and lives in NH. She is a pre-school teacher, an avid cook, and enjoys a good novel. My son has always kept us on our toes, even before he was born. There were concerns over a heart arrhythmia, which was detected at 16 weeks of gestation. He decided to join us 6 weeks early and spent weeks in the NICU to fix some lung development issues (his heart

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Our Diagnosis Story; or, a mad dash into a brick wall

I used to think that when people had children with severe disabilities, it would be something detected in the womb, or shortly after birth—that it would be obvious that something was wrong. But this was not at all the case with our son, Asa. Asa is the third of three boys. He was born after a mere two hours of labor, a big healthy baby weighing 10lbs exactly. I remember a hospital staff member saying, “Congratulations—you have a toddler!” For

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S01 E05: Going Out as a Special Needs Parent

Parents of typical children struggle through a few years when it can be difficult to get out of the house, but eventually that phase changes, and going out becomes easier and easier.  In this episode, Talya and Joanna chat about how, in contrast, for many families with special needs children, the challenges involved in going out can get harder, rather than easier, as the children get older. Simple activities, which most people take for granted, become imbued with such chaos

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