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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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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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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Fighting the Minivan

When we first got married and were looking for our first house, I told my husband I only wanted to live in a downtown area. I love the ability to walk to the train station, go to shops, walk to dinner, basically enjoy where I live. For our first and second homes, this was the case. But, after getting our son’s diagnosis (insert link to diagnosis story), we realized that he might not just grow into our home. Life is

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Triggering: Why is your child hurting you?

“What did you do?” It is often asked in one form or another when people find out my son bites, kicks, and hurts, it most cases, me. See, people assume that I must have upset my son. After all, why would he hurt me? But the reality is, I am fortunate because I realized I was doing nothing wrong. Let me go into my exact thought process. At first, I thought it was my fault. That my son was trying

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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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2020: Glimpse Into the Life of a Special Needs Family

The world stood still for a moment as the freeways were silent, the skies empty of any planes, and the sidewalks were bare of any people. The uneasy calm mixed with fear in the air was a feeling I had known all too well. It was the feeling I had when we got our diagnosis. I was in a pure daze during that phone call. The world lost all sound, and it felt as if I was all alone, even

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