To All The Mothers I Have Been Before

Community Submission by: EllieEllie is a lawyer living in Baltimore with her husband Mark. They are parents to six year old Molly and two year old Lila, who has Lamb-Shaffer Syndrome. To follow her story, sign up for Ellie’s newsletter. To the mother of the two year old, worrying about whether to have a second baby… I see you.  I see how worried you are, about having a second kid and what if that child isn’t healthy?  What if they

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It’s Okay to Not Know How I am Feeling – and Still be my Friend

What kind of friend am I? I am always busier these days. I have children, so I can’t do anything for myself during “normal” hours. I’ve moved three time zones from one set of friends, two from the next, and I somehow need to make new friends where I live now in the middle of a pandemic. I don’t want to be a bad friend, but the deck is stacked pretty high. I am busy, stressed out, my life consists

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Mile Markers: A Rett Syndrome Diagnosis Story

Community Submission by: Leslie Mehta Leslie Mehta is an attorney. She lives with her husband, Tarun, and two daughters, Brooke and Blair, in Richmond, Virginia. You can follow her advocacy journey at www.prettybrooke.com, on Facebook at pRETTy Brooke, and her YouTube channel of the same name. I met Tarun Mehta in law school. Five years and several bar exams later, we married near my small North Carolina hometown on August 11, 2007. Rarely did we discuss having children. We were

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A Tourette’s Diagnosis

Community Submission by: Kelda York Kelda York is married with three children and lives in NH. She is a pre-school teacher, an avid cook, and enjoys a good novel. My son has always kept us on our toes, even before he was born. There were concerns over a heart arrhythmia, which was detected at 16 weeks of gestation. He decided to join us 6 weeks early and spent weeks in the NICU to fix some lung development issues (his heart

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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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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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Shameful Truths from a Special Needs Mom

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

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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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She Has No Idea How Lucky She Is

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

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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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