ASD – 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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What I Learned the Day My Son Eloped

Community Submission by: Avis Avis is the mother of three boys: the older two are typically-developed, and her youngest, Bennett, has Phelan-McDermid Syndrome with autism. She is also a wife and a dentist. On June 16th, 2020, my 6-year-old son Bennett ran out of the house and jumped the fence. By the time we realized he wasn’t hiding or avoiding us, we could NOT find him. We live on a corner and we weren’t sure which direction he ran. We

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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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Trust Your Gut

The best advice is the advice you want to share. Let me pass on to you what someone said to me once. Someone said, “you got this, momma. Trust your momma gut!” I don’t think I was even barely a mother at that point. I, like so many other parents, was looking around for help to a problem. Let me tell you why trusting your gut is the best advice you can be given, even when you feel they aren’t

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Dangerously Mobile

Dangerously Mobile – One who can move their body, but has limited awareness of the implications and boundaries of their movements. Think about it like this. Imagine you are on a boat. The boat is moving. It’s moving fast. You are trying to gain your balance and walk from one end to the other, but the waves are unpredictable, and it feels as though the ground is always in motion – because it is. Slowly you are making your way,

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