Special Needs Marathon – the elephant in the room

The other day I read, “Remember how exhausting that newborn parenting phase was? Well, some special needs parents have been doing that for years. So let that sink in.” It is a meme that is supposed to inspire thought and compassion from those who don’t know what it’s like to have a child of severe need but have a child and therefore know the feeling of exhaustion. But, unfortunately, to me, it placed an elephant in the room. I want

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Breaking Up With Myself

Ever have a realization smack you in the face? In my case, I sat up straight, my eyes began to lose their focus, my heart began to pump a little faster, my stomach started to twist, and I felt distant but completely clear and present at the same time. “You got tired of me canceling, and I got tired of making excuses.” That was the line written by Tracey Higgins that did it. This moment of clarity as to why

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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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Two Hours to Myself

Little do we know when we are children how much of a luxury having time is. I remember saying how I couldn’t wait to be older and my grandmother telling me, “you will always be old, but you will only be young once,” something I wish I had appreciated at the moment more. She was trying to tell me that I would one day yearn for time, but mostly to enjoy the moments we have. So, when the reality struck

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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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