Special needs parenting – Page 4

What is the Value of My Child?

We know these people exist. The people who think that children like mine are drains on society. That if you don’t have something to offer the world, your life has less value. What we don’t typically see is someone posting their opinion on social media and not expecting that there will be repercussions for their words. The other night while scrolling on Facebook, I came across a post. Screenshot after screenshot of horrible, disgusting, “freedom of speech” arguments, stating opinions

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S01 E03: Special Education in the Age of COVID Part B

We sat down (virtually!) on August 2nd with educational consultant and advocate Angelica Medrano to talk about how an educational advocate can help parents to navigate the world of special education, as well as the particular challenges to special education during the age of COVID. Our conversation was so fruitful that we divided it into two podcast episodes. In this episode–Part B–we talk about why the proposed distance learning plans pose a particular challenge to children with disabilities; specifically why

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S01 E02: Special Education in the Age of COVID Part A

We sat down (virtually!) on August 2nd with educational consultant and advocate Angelica Medrano to talk about how an educational advocate can help parents to navigate the world of special education, as well as the particular challenges to special education during the age of COVID. Our conversation was so fruitful that we divided it into two podcast episodes. In this episode, we discuss some basic special education terminology and information; the role of an educational advocate; advice about how to

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#Grief #Limitations #Parenting #Regression

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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#Education and Schools #Limitations #Parenting #Regression #Trending

Dear COVID: From a Special Needs Mom

“Your child won’t die from being home,” began the response that triggered this post. It wasn’t a response to anything I said or did. Still, a tightness grew in my chest as I realized this person had no idea what many parents and caregivers are going through at this very moment. This “letter” is for all the people who are wondering why others are fighting for their children to receive in-person education to stop continued regression even though I still

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#Dangerously Mobile #Grief #Limitations #Parenting #Regression

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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#Advocacy #Limitations #Parenting

He is so cute

Just weeks after our diagnosis, wound still fresh and raw, I took my son with me to the store. I was standing in line waiting my turn, him in the cart looking at me while smiling sweetly and slouching over from the lack of core strength, when the employee behind the counter said, “he is so cute!” I politely smiled, said thank you, while inside my heart dropped. My head, it retaliated with, “will you think he’s cute when he

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S01 E01: Introduction

In this introductory episode, Joanna and Talya discuss what Our Hidden Stories and the OHS Podcast are all about.

(1) Our Hidden Stories (an audio blog) can be found at https://ourhiddenstories.com

(2) To see the latest from OHS, please “like” our Facebook page at https://www.facebook.com/ourhiddenstoriespodcast

(3) Joanna’s son (Saly) and Talya’s son (Asa) share a genetic disorder called Phelan-McDermid Syndrome, which is a severe developmental disorder. You can learn more at www.pmsf.org.

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#Depression #Grief #Limitations

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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#Advocacy #Grief #Parenting #Regression

Five

Our son, Asa, turned five this week. The best picture I could manage of him (and his Covid hair) with his cake is this one. Here is what is going on in this picture: Asa does not know he is turning five. He does not know what a birthday is. He does not know what “five” is. He does not know what a number is. Asa has no idea the object on the table is a cake. However, like every

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