Seeing Progress

“I would say he’s begun to do that in the last six months,” I said to the doctor in response to her developmental probe into my son. “Isn’t progress wonderful?” The question was innocent enough, and for once, I was able to digest it without frustration or sadness. “It really is,” I replied with a smile and actually meant it. The thing about progress, for me personally, is that my son had a regression of skills just after his second

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Be Careful What You Wish For

There is a saying, “careful what you wish for because you just might get it.” This idea is that we should be more thoughtful of what we truly want because it might not be what we need. Innocent comments replay over and over in my head that I made as my son was a baby. Those comments feel ignorant now. Comments such as: I’m not in any hurry for him to sit up. I’m not in any hurry for him

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You Are An Expert

“My son has Phelan-McDermid Syndrome,” (PMS) I declared as the nurse asked if my son had any pre-existing conditions. “What was that?” she asked as many have before her and many after her will as well. “It’s a genetic deletion,” I began as I always do, “it might be easier just to write down 22q13.33 deletion syndrome,” has become my default as many in the medical field may understand chromosomes better. However, they still have no idea what those numbers

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Introduction to Special Needs Parenting

Recently I read a beautiful story. The story goes like this. Outside of the hospital, a man is watching as a mother helps her son into the car. The man repeatedly asks if this mother needs help with her 20 something-year-old, who’s larger than she. She kindly declines and even says this is normal, so no worries. In a surprise twist, the man becomes emotional because his baby now has a feeding tube, and he didn’t think he could handle

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Self Esteem and the Special Needs Caregiver

It wasn’t 7:00 am on a Saturday, and I was exhausted when I wrote this. My son woke up in the middle of the night, as he often does, and every time he fussed a bit, I woke, holding my breath and bouncing up in a panic. Each time he was fine. But the physical toll of that alone could exhaust a person. But it isn’t just that. I went in to grab him to start his day, as the

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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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Global Developmental Delays to Intellectual Disability

“I meant to tell you it’s not Global Delay anymore. It’s now a diagnosis of Intellectual Disability,” I said to the nurse as she was presenting her portion of the IEP (Individualized Education Plan) for my son. She quickly questioned, “who gave you that diagnosis?” To which I replied, “he just had some testing done through developmental at (the hospital), and he was given that when they reevaluated his autism diagnosis.” She looked at me through the zoom meeting asking,

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Grief in my Gratitude: My Son is Turning Five

Five years ago,  with only a few hours of labor, my son came into this world. He was bigger than his sister, quieter than his sister, and in that brief perfect moment that he entered this world, our family was complete. On his first birthday, we had a big party, just like we had done for his sister. I jokingly would say it was to celebrate us as parents making it a year because, after all, “these kids will never

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Mountains: The Journey for our Loved Ones and Ourselves

I remember when we started early intervention. The thought behind it is that with a bit of intervention, my child would catch up to his peers. The reality is, at the time, I didn’t know that my view, and of the countless other experts, of the situation, was completely wrong. “Let’s get him the help he needs to catch up,” they would say. Of course, we wanted that! I mean, look at his sister so happy and healthy, in no

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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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