Parenting a child with special needs

Marissa Sweat Evans by Marissa Sweat Evans Additional Needs

Marissa Sweat Evans

Marissa Sweat Evans

I am a mother and advocate for my son as well as others with disabilities. My oldest was diagnosis with cerebral palsy, epilepsy and autism.

From the outside looking in people may look at us and say we have it easy.

Some may even say they couldn’t imagine doing what we must do every single day. And that’s being a full-time caregiver to our special babies.

I’ve heard it all because people have different views as to what it takes to be a parent of a child with special needs.

Some see our children in wheelchairs and automatically assume that they can’t do anything. Some look at our children and try to empathize with us.

But unless they’re there caring for a child with special needs day in and day out, they really don’t understand.

As a parent of a child with special needs I’m always told if it is hard you know how to make it look easy.

Its not that I make it look easy its just how it seems to those on the outside looking in.

For the past few months caring for my son has been a rollercoaster ride.

Especially with his behavior. If things don’t go his way or if anything is out of his norm it causes complete chaos.

Sometimes its easier to give in to the things he wants or want us to do rather than him lashing out on us.

Lately we’ve literally been feeling it. From the hitting, to the scratching, to the biting and kicking.

Anything he can do to make us do what he wants. But this isn’t the thing that people from the outside looking in see nor is it something we talk to everyone about.

They don’t witness the sleepless nights or us cleaning bowel out of his bed or our bathtub.

They’re not here when he’s waking up one and two o’clock in the morning yelling to the top of his lungs.

They don’t know how it feel to worry every second you’re not around your child not because the person you left him with isn’t responsible or trustworthy enough to keep.

But because your afraid of what he might do. Caring for Jaylen is a 24/7 with no breaks unless he’s in school.

And even than I worry about what he’s doing.

Although being his parent isn’t easy it has taught me so much.

Things I need to not only care for him but my other two kids as well.

Being his Mom is something I wouldn’t change for the world.

Because I feel like he chooses me because he knew I could handle it.

So, to the parents that may think the only ones facing challenges everyday you’re not.

To the people who’s on the outside looking in our lives are just like a picture it can make things look one way, but it could be saying an entirely different thing.


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