Fighting the Minivan

When we first got married and were looking for our first house, I told my husband I only wanted to live in a downtown area. I love the ability to walk to the train station, go to shops, walk to dinner, basically enjoy where I live. For our first and second homes, this was the case. But, after getting our son’s diagnosis (insert link to diagnosis story), we realized that he might not just grow into our home. Life is

Missing Puzzle Pieces

My son is like a puzzle. One with no directions, no picture, and guess what, it’s missing a piece – or in his case 3 pieces. Sure, we know where the missing pieces are, or should I say aren’t, but it impacts other puzzle elements as well. There are days I look at my son, and I wonder, does he know he has an itch? Do you ever have an itch and think about it? I do, now, at least.

Triggering: Why is your child hurting you?

“What did you do?” It is often asked in one form or another when people find out my son bites, kicks, and hurts, it most cases, me. See, people assume that I must have upset my son. After all, why would he hurt me? But the reality is, I am fortunate because I realized I was doing nothing wrong. Let me go into my exact thought process. At first, I thought it was my fault. That my son was trying

Voice for the Voiceless

We left the house exactly as scheduled, which in itself was a miracle, arriving as requested 30 minutes prior for check-in at the hospital. Everything was going smoothly thanks to pre-check-in via the phone, and we were sitting in the radiology waiting room a full 10 minutes early. Our appointment was for 8:00 am, and I thought, man, we might be out of here by 9 o’clock. Before I get too deep into this story, let me tell you a

Hypotonia – Weak Muscle Tone

The first time I heard the term hypotonia, it didn’t even register. I focused on the shots and answered questions at that checkup when our pediatrician uttered a word I never heard before. I must have missed it. After all, humans do that. We use context clues, and if the word doesn’t seem too alarming or concerning, we tend to assume the meaning and move past it. My husband heard it, and he must have started to do research and

2020: Glimpse Into the Life of a Special Needs Family

The world stood still for a moment as the freeways were silent, the skies empty of any planes, and the sidewalks were bare of any people. The uneasy calm mixed with fear in the air was a feeling I had known all too well. It was the feeling I had when we got our diagnosis. I was in a pure daze during that phone call. The world lost all sound, and it felt as if I was all alone, even

An Outcast In My Own Family

One night I was sitting on the floor near my son as he rolled around chewing on a book, and I realized the rest of my family was laughing and having fun at the kitchen table. It was the odd moment where my life sort of flashed by, and I realized I always was the one to step back to “do the right thing” so others could enjoy themselves. I was the one who left early to get a child

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

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

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