Introduction to Special Needs Parenting

Recently I read a beautiful story. The story goes like this. Outside of the hospital, a man is watching as a mother helps her son into the car. The man repeatedly asks if this mother needs help with her 20 something-year-old, who’s larger than she. She kindly declines and even says this is normal, so no worries. In a surprise twist, the man becomes emotional because his baby now has a feeding tube, and he didn’t think he could handle

Self Esteem and the Special Needs Caregiver

It wasn’t 7:00 am on a Saturday, and I was exhausted when I wrote this. My son woke up in the middle of the night, as he often does, and every time he fussed a bit, I woke, holding my breath and bouncing up in a panic. Each time he was fine. But the physical toll of that alone could exhaust a person. But it isn’t just that. I went in to grab him to start his day, as the

When Your Child Has No Words

Every night, like clockwork these days, I hear the sounds of my son as he begins the cycle of waking up. It starts around midnight. Then on and off for hours, he wakes, then goes to sleep, then wakes. During these times, I feel the deepest of my sadness that my son doesn’t speak. Most people would assume that a 5-year-old should be able to call for their parent, ask for a drink of water, or say they had a

Two Hours to Myself

Little do we know when we are children how much of a luxury having time is. I remember saying how I couldn’t wait to be older and my grandmother telling me, “you will always be old, but you will only be young once,” something I wish I had appreciated at the moment more. She was trying to tell me that I would one day yearn for time, but mostly to enjoy the moments we have. So, when the reality struck

Global Developmental Delays to Intellectual Disability

“I meant to tell you it’s not Global Delay anymore. It’s now a diagnosis of Intellectual Disability,” I said to the nurse as she was presenting her portion of the IEP (Individualized Education Plan) for my son. She quickly questioned, “who gave you that diagnosis?” To which I replied, “he just had some testing done through developmental at (the hospital), and he was given that when they reevaluated his autism diagnosis.” She looked at me through the zoom meeting asking,

Grief in my Gratitude: My Son is Turning Five

Five years ago,  with only a few hours of labor, my son came into this world. He was bigger than his sister, quieter than his sister, and in that brief perfect moment that he entered this world, our family was complete. On his first birthday, we had a big party, just like we had done for his sister. I jokingly would say it was to celebrate us as parents making it a year because, after all, “these kids will never

Mountains: The Journey for our Loved Ones and Ourselves

I remember when we started early intervention. The thought behind it is that with a bit of intervention, my child would catch up to his peers. The reality is, at the time, I didn’t know that my view, and of the countless other experts, of the situation, was completely wrong. “Let’s get him the help he needs to catch up,” they would say. Of course, we wanted that! I mean, look at his sister so happy and healthy, in no

Anticipatory Grief: Sibling Perspective

Community Submission by: Ameera Rey One minute you are laying in bed. Eyes closed. Trying to go to sleep. Then you have an out-of-body experience. You are in the hospital. A doctor has just walked in and told you the person you love so much is dead. You are sobbing. So extremely angry. Angry you couldn’t save him. Angry you couldn’t protect him. Angry his body was riddled with a disease that stole his life. You’re so angry that you

Performance Masquerading as Advice Helps No One

“He should have access to his voice at all times,” she wrote.  Out of context, it would be hard to know what to make of a statement like this, but I think most of us would be inclined to think it is correct, or good advice, or at least true as an aspiration. Unfortunately, in this case, it was more like a weapon. I should have expected it. After all, the internet seems to spawn a whole population of individuals

A Testimony of Strength

For a year and a half, I worked out in the room attached to our playroom. There is a sliding glass door that leads into a mostly glass room which looks out into the backyard. This also means anyone who is in the playroom can see me peddling away on the Peloton. Over the last year that everyone has been home, there are days my husband would say, “take a ride,” and if you need exercise as I do, many