Additional Needs
Age Appropriate
by Jodi Shenal
on 26th April, 2024
Responding to “So, What Do You Do?” - Raising a Child with Special Needs
Ever since I have stopped working outside the home I have no idea how to answer the question “what do you do?"
I am not a stay-at-home mom.
I am so much more.
Yes, as a mother I have my routine duties.
I am a chocolate milk maker, bedtime story reader, knock-knock joke-teller to our 5 year old, and laundry lady for the entire family.
I am the toothpaste and toilet paper purchaser as well as the “Swiffer-er.” (Hands and knees scrubbing is simply not a priority!)
I do all of this and more.
I am my youngest son’s physical, occupational, and speech therapist, his nurse, his soft place to snuggle, his advocate, his biggest cheerleader, his mommy, but most of all I am his voice.
How do you define all of that?
Rewind a bit….
When our youngest son was 3 months old I brought him in to his pediatrician so she could see his lack of neck strength.
She told me that everyone develops at their own pace and not to worry.
I brought him home and the nagging feeling in my heart never went away.
I knew that something was amiss, but yet didn’t really want to admit it.
Really, who wants to admit that something is wrong with their baby?
I then brought him in a month or so later and asked to be referred to a physical therapist.
He still was not holding his head up and I wanted so badly for him to reach this milestone.
It’s agonizing watching your child unable to do something that most parents take for granted.
It’s even more heart wrenching trying to ignore what other people are thinking and likely saying about your child behind your back.
Do you know what it’s like day after day trying to get your son to accomplish ONE goal?
All I want is for him to hold his head up.
Imagine trying to get your typical 4 year old child to recognize a shape.
Simple enough right?
Day after day you show him a picture of a circle and he can never identify this shape, he can’t even point to it.
Monday, you get the flashcard out and try to get him to say “circle.”
No luck today.
He says “cir.”
Tuesday, you get a picture of a sun out and try to get him to say “circle.”
He says nothing; he just cries.
You cry too, and cry again when you drive him to therapy and beg for him to just say the word!
Wednesday, you show him a cookie and ask him what shape it is.
He says something that sounds very similar to “circle” but it’s not quite right.
Today you cheer.
You continue to do this the rest of the week.
You continue the rest of the month.
I am the mom who is still sitting at the kitchen table with the wrinkled flashcard trying to get my son to say “circle.”
I will never ever give up.
It’s anything but simple. There are lots of close calls and still lots of tears.
You don’t give up.
Three hundred and sixty-five days later you are still sitting at the kitchen table with the worn out flashcard trying desperately for your son to say “circle.”
This is what I do. Every. Day.
I am more than a stay at home mom.
After two years of physical therapy twice a week our son still struggles to hold his head up.
I know that he will accomplish this goal; it’s my job.
I will continue to do my job as his physical, occupational, and speech therapist, his nurse, his soft place to snuggle, his advocate, his biggest cheerleader, his mommy, and his voice.
So, I guess when the question of “what do you do?” is asked from now on I will simply answer mostly everything.
