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
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
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
Something shameful to admit as a parent is when you feel that you have given up because you are supposed to be the hopeful fighter, and advocate, while also determined but strong and tender. The reality is much more sinister and painful since there are days when surviving is all you can do. At least that is how it feels for me. There are moments when I feel so beaten down that I wonder why we even do this. It
When I heard the word “advocate” for the first time, I assumed it was very political. I am not political, I reasoned, so therefore I couldn’t be an advocate. Yes, I vote–but running for office is not in my future (although I have learned never to say never). Little did I know that being an advocate was not limited to politics. It is so much more. It is giving a voice to the voiceless, or those who are barely heard.
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
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
Not long after I recorded the “Going Out” OHS Podcast episode, we decided to go to the beach as a family. Despite just talking about the very topic—how difficult it is to do family activities with Asa—I was still, somehow, unprepared. We went to a lovely, clean little beach that is a mere 45-minute drive from our home. I’m beginning this piece on my phone as I sit in my parked minivan with Asa, and this is my view. You’d
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,
I used to joke that I had no idea how to wean a child without being pregnant with another one. Our oldest was nearly two when, in the second trimester with his younger brother, my body shifted its focus to the baby. My milk supply dwindled, and my son lost interest. It worked out brilliantly, without requiring me to take a tough stand. This was especially a relief because we have always called breastfeeding “boobies,” and our oldest was an
