A Day in the Life of a Special Needs Mom: Pandemic Edition

Community Submission by: Anonymous It’s 8:00 a.m. and I am awakened by the sound of J, my youngest son, kicking the wall next to his bed. I am so very tired. I feel like my actual soul is exhausted.  I unzip J from his special bed, which keeps him safe at night. His whole room smells like pee. I sniff his sheets. Despite the fact that I washed the bedding days ago, it all needs to be washed again. J, age

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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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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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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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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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