A Peek at Being a Special Needs Parent

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“God only gives special kids to special parents!”

Nah. I promise that’s not true. I’m a super regular mom, with a super regular set of mom-skills. And three really cool kids. One of them happens to have ‘special needs’. And navigating that…is hard. Parenting is hard, parenting special needs kids is leveling up.

Because each kid is different, and even with a diagnosis, there’s no handbook. (Trust me, I looked. In all of the piles of paperwork I’ve been handed…zero handbooks.)

by: Sarah Cupp, Guest Author

Hear me: I love her as is. I accept her just as is. She is no burden. She is my joy in ways I didn’t know would be possible. But it comes with challenges and constant worry. (and zero handbooks, remember?) I think Special Needs parents just get good at hiding the constant loop of thoughts that are playing in the back of our minds.

We all know that loop.

“Am I reading enough to my 6 week old? Which sunscreen ingredient is toxic? The safe sunscreen is $24!? Where do I buy a sun-safe bubble that fits ages 6 months-24 years? I should sign them up for a sport, it builds character. If I force them into sports they might resent me for a lifetime. Why is my van so disgusting?? Why is that mom’s van so CLEAN??”

That loop.

But now it’s things like:
Where’s the best place for speech therapy?

What the blazes is an IEP meeting?

I need to find ALL THE SERVICES!

Is it too many appointments?

Sensory input?

When will she talk? WILL she talk?

Do we pursue a diagnosis?

How the heck do you get a diagnosis?

What do you DO with one?

She flooded the bathroom sink again!!

Oh, good, another “If you’d discipline her, she’ll learn not to do that” comment.

How long do I go to jail for hitting someone? Worth it? probably not.

WHY DID YOU OPEN YOUR DIAPER AT NAPTIME?

Oh my gosh, that smile is so cute, it might kill me.

You used my new long wear lipstick as wall décor. Neat.
Oh, the smile thing again. Fine. You win.

How do you potty train an older child?

What diet is supposed to help which behaviors?

How do I tell if she’s just kinda sick or really super sick?special needs parenting

How do I trust a stranger with my baby when she can’t tell me if someone is unkind to her?

How long is too long to watch Peppa Pig if it keeps her out of trouble?

I need to do a better job of getting her help. Other moms would do more.

But I have two other kids and limited time. Are the older kids getting enough of us?

They’re all going to suffer.

What will 9 look like? And 15 and 30? What does the future hold?

Who’s gonna take care of her when I die?

I mean, I just won’t die ever I guess. That works.

And that’s not counting the mountain of concerns other special needs parents face. Physical, medical, medication, treatment options. No. Handbooks.

We’re not special. Just people who get so accustomed to the daily background noise you eventually get better at pushing it aside and just dealing. Because that’s the only real option you have. You re-prioritize, make new plans and goals, and fiercely celebrate milestones overlooked by others. I don’t feel like being a special needs parent is all that special.

Most days are great. Other days you see the disability for the first time in a while and you crumble a little. Because you love that little person and the reality is, not everyone will. Not everyone knows them and loves them for who they are. Cute babies with speech delays become kids with pronounced delays. And people back away. They don’t know how to relate to your child as naturally. And that’s okay. I don’t know how to approach every special needs child. I don’t expect everyone to know Callie the way we do.special needs is hard

But it is hard to walk through.

Invited to a friend’s? Well, she’s AGGRESSIVELY affectionate. Full body tackle, squeezing your neck like a boa constrictor affectionate. Kids don’t love it so much. We’re working on it, a lot. But you can only hear “oh, it’s okay.” so many times before it feels…not so okay. It’s hard to go and it’s hard to decline the invitation.

It’s hard when cashiers attempt small talk with your seven year old and you have that split second to decide how to answer. Do I explain her delays? Is that necessary? Am I educating? Am I apologizing for my child or her disability? I’m not sorry.

And in that same moment while I’m deciding, I’m simultaneously trying to keep her go-go-gadget arms from grabbing the M&Ms in front of us and she’s eight seconds from screaming because she doesn’t understand why she can’t have them. I’m trying to finish this transaction and bolt before there’s a scene.

All the while knowing there’s someone watching who doesn’t see a child with trouble self-regulating and just sees a kid lacking discipline and a pushover mom who has no control. I could care less about those opinions. But I still feel the eyes. I still feel the judgment.

It gets hard: wanting your child included, wanting her visible, wanting society to be comfortable with disabilities.

The stress of being on high alert the entire time, making the right decisions, doing ENOUGH for her, planning for a future that you still don’t have a plan for, it’s hard. Feeling isolated, pushing yourself to do the events and the activities, and sometimes reminding yourself that Peppa Pig (for her) and Netflix (for you) is okay too.

 

Editor’s Note: Other of our authors have shared their perspectives on Special Needs Parenting. You can read about Megan’s reflections of her first year of parenting her special needs daughter, Kelly’s thoughts  about her journey with her autistic son, or Jessica’s perspective on raising a child with severe ADHD.

 

You can find some resources for special needs kids at Care.com.  Gigi’s Playhouse has a local achievement center which is focused on Down’s Syndrome Awareness, and Hand-in-Hand in the Quad Cities partners with parents of children with special needs or disabilities to give them resources and respite care. 

sarah cupp special needs parenting

Sarah is a mom of 3, wife of 1, navigating parenting a high schooler, a pre-teen, and a child with developmental delays. Her hobbies include sarcasm, iced coffee, powerlifting, cleaning messes they didn’t warn you about, and buying yarn for projects she’ll knit…eventually. She’s also trying to catch up on laundry. She also wrote a post about powerlifting.

She has a neglected blog at Hiccups Stuff.

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