Grief – Page 2 – Our Hidden Stories

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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My Child Hurts Me

I am not going to sugar coat it. No one in this world loves my son more than me. No one in this world gets hurt by my son more than me. He pulls my hair, sometimes clumps in his hand. He kicks me, punches, and throws his body with no care forcing me to strain my muscles to the limits while also covering me in bruises. But the thing he does that has caused me the most pain and

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I Love My Son – But I Don’t Like Him

Community Submission by: Anonymous I recently watched the movie “Lady Bird.” If you haven’t seen it, it’s the story of the relationship between a rebellious teen and her mother. I wouldn’t have normally resonated with this type of plot, but recently, my 11-year son and his hormones have been ruining my life (hormones + autism = horrible combination). So when the mother, played expertly by Laurie Metcalf, basically kicked her daughter out of the house, I was cheering from afar!

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The Struggle for Acceptance: The Never-Ending Diagnosis Story of a Rare Disease

When we got the diagnosis of Phelan-McDermid Syndrome for my son, we were shocked. Our hearts sank, the mourning period began, and we realized that every expectation we had for our son was gone. As if overnight, all I could see was a never-ending list of therapies, doctors’ appointments, paperwork, and realizing it would never end. It felt defeating as a horrible battle between my brain and my heart began. So overcome with grief, I could not see clearly at

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I Am Not Jealous of You

Recently I read a quick read called, “10 Things That Would Make Special Needs Parent Cringe If You Knew.” I wanted to know what parents of neurotypical children would think I would be upset if they knew, and the tagline pulled me in. It was catchy, but did it reflect me? I want to learn from them As I read through the list, I couldn’t help but feel I needed to share my opinions on the topic of jealousy. I

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If Only He Was…Typical

Typical, adjective, having the distinctive qualities of a particular type of person or thing. Oxford Dictionary I use this term a lot, as many other people do when referring to the general public. I probably use it too much when I think about “if only.” I know some people do not like this term, and I don’t blame them, I don’t either. I still daydream about “if only” Some days it’s just as simple as looking at my son. His

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My Daughter is Watching Me Parent a Special Needs Child

My daughter is watching me parent a special needs child, even when I don’t think she is. She sees me with her brother. She sees me cooking and cleaning. She sees me all the times I say I can’t play right now. But mostly, she sees my disappointments even when I think I’m doing my best to hide them. The other morning was one of those moments. First, I got the call canceling the appointment for my son that I

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Missed Milestones: Part I

Implications on Me As it was nearing my son’s first birthday, his teacher and trusted caregiver at his day school handed us the first of many to come, “Ages and Stages,” a form with questions about at what level the child is performing specific tasks. I had never seen this with my typical daughter. She kindly suggested I fill it out and take it with me to my son’s 1-year checkup that would be the next week. A few weeks

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Poopocalypse

I made it ten years as a mother before I had to clean poop off of a wall. This isn’t a bad record considering we’ve had no break from changing diapers for the past decade. After all, many children go through a poop-smearing baby/toddler phase, and this is one gross habit my kids never got into—though there are plenty of others! A single, isolated poop-cleaning episode during year eleven of my marriage would not in itself be a noteworthy event—especially

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It’s Okay to be Sad

My son has a rare genetic disorder called Phelan-McDermid Syndrome and he doesn’t even know it. He is as happy as … well, honestly, he is the happiest kid I know. He falls at least 30 times a day, and he just picks himself back up none the wiser. He is 4 years old and can’t use words. He LOVES food, and he can’t chew, at least not well. This is not typical. My son will never grow to be

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