Tuesday, November 7, 2017

Special-Needs Parenting Is Weird

My 4-year-old son was hospitalized on a recent Saturday night.

He had an epileptic seizure around 9:30 p.m. As usual, the seizure started with vomiting, followed by subtle shaking of his arms and his eyes veering off to the left. And as usual, the seizure didn't stop on its own.

My husband and I gave him a dose of emergency anti-seizure medication. Meanwhile, my brother whom we were visiting called emergency medical services.

By the time the paramedics arrived, the seizure had stopped, but they decided to go ahead and transport him to a nearby hospital for blood work and overnight observation. I went with him.

Sometime between singing "Wheels on the Bus" to my son for the 10th time in a row to help him fall asleep in his hospital bed, and getting discharged from the hospital the next morning, it occurred to me that I couldn't remember how many times my son had been hospitalized during his life. Was it 8 times, or maybe 9?

And then it struck me how odd that must be, to not know how many times your young child has been hospitalized. How many parents of young children, or even older children, can say that?

How many parents can say that their child had more than 10 doctor and therapy appointments just last month?

How many parents can say that their child's medical records fill up an entire filing box?

How many parents can say that their child communicates with them primarily by making gestures and handing them pictures? I'm sure my family isn't the only one using the Picture Exchange Communication System, but I don't actually know anyone else who does.

Special-needs parenting is weird.

I remember talking with another mom back when my son was around 2 years old and hers was maybe 18 months. Neither boy was talking, but she wasn't worried about hers. "I know he'll talk someday," she said. 

I see how she could think that, since most kids do in fact talk someday. 

But the thought was so very different from my own experience. As a parent of a child with cerebral palsy, I couldn't assume that my son would talk someday.

In fact, there's been a lot that I couldn't assume about him.

He was born weighing less than 2 pounds and had numerous complications of prematuritya brain bleed, chronic lung disease, feeding issues, etc. I couldn't assume that he'd survive infancy.

But he did.

With damage to a region of his brain that controls movement, I couldn't assume that he'd someday be able to walk independently.

But he does. (With support from AFOs.)

One good thing about his disabilities is that I tend not to take his developmental achievements for granted. Even if they're seemingly small.

Soon after that recent seizure, my family went on vacation. We stayed at a park near the North Sea that had a playground, a swimming pool, and arts and crafts activities for kids. There, away from the clutter of daily life, I noticed new things about my son. For example, I noticed that he was initiating a variety of activities himself, like playing on the air trampoline and joining in on kids' arts and crafts activities. 

This last one was a big deal to me. His therapy team had once been concerned about his lack of interaction with other kids. Now he was choosing to interact with other kids.

I also noticed that he had overcome his aversion to touching sand. He crawled in it, he found shells in it and picked them up to show me, andhis favorite!he knocked down mine and my husband's sand castles. 

on his way to knock down his daddy's sand castle
I couldn't be more proud.

Yes, special-needs parenting is weird.

But it's also weirdly awesome.


  1. Initiation and touching sand are big.

    Awesome and weirdly awesome.

  2. Hello my son is 8 years old and had is first seizure at 2 years he was diagnosed with generalized epilepsy at 5 years old has been on medication since until doctor got him off and on he broke out on a seizure lasting almost 10 minutes he was put back on medication and the meds even increased ever since were back to his moody ness, tantrums, waking up every morning struggling and at night when asleep his body is constantly twitching mostly from his upper body, he had another big seizure and were still at it with all these moods. we tried different meds nothing was really working. I never stopped battling it, I’m open and supportive when looking at alternative and procedures. I saw someone comment on a website. Her daughter had seizure and she used a herbal medicine for her daughter seizure and she was seizure free. I’m glad that it was possible. I was ready to try anything that we help my son, i had a conversation with the Dr . I decided try the herbal medicine, I purchased the medicine. my son started taking the medicine. I was shocked to see my son improve, he stop having seizures. his more active and no more seizure. I’m so happy to see my son seizure free. Do as much google research as you can and do not give up on trying. If there is improvement continue, if there is no improvement stop and try something else Everyone is different. thank God my son is seizure free. you can email him on dr.lewisamenico@yahoo.com