Food For Thought From A Special Needs Mama

After reading several posts recently, on Social Media, about the treatment of special needs kids, I wanted to share a few thoughts.  For starters, my own children have special needs – each very unique in those needs – and while my life is easy compared to many, it has still left me with a heart for those who are not labeled as “typical.”

With both children, I have been that parent sitting by myself, watching my child stick out like a sore thumb, at a birthday party.  

I have been that parent, pasting on a smile, and politely nodding my head when I get advice about how to handle my kids.  

I have been that parent, at a restaurant, being so exhausted that just walking out the door took an extraordinary amount of effort, eating my food, and praying that somehow we could make it through a meal without a meltdown, or too many stares, when my child loses their ever loving mind because someone put parsley on her plate.  

I have been that parent who has had to literally bite her lip, when told that their child doesn’t look like they have special needs, or that they are perfect at school.  

Look, I’m not bashing anyone who has said those things.   Mainly because you can’t understand what it feels like to walk on a path you’ve never walked on.  

So instead, let me take this opportunity to try and explain.  We are tired.  Like really tired.  When we tell you that we are “good.”. It’s probably just the easiest way to answer at the moment.  

We have heard it all.  And then some.

He doesn’t look like she has Special Needs”

There is no special needs look. The picture above is of my daughter when she was 4, just diagnosed with PANDAS.  She’s now 10 going on 20. 🤦😬🙄. But, you would never know what’s she’s been through, or continues to go through, by looking at her.   Many individuals with special needs have typical jobs, typical families and typical lives. Many are nonverbal. I honestly don’t like the term special needs, because when you step back, you will see that each of us have special needs unique to each of us.  

At least your child doesn’t have ____.  You are so blessed!”

Our journeys are all different.  Comparing them doesn’t make them better for anyone.  Yes, we are blessed.  Abundantly so.  But that doesn’t take away from our daily trials, just like our trials do not take away from our blessings.

You are so strong!  I don’t know how you manage.”

No.  Not really. I am pretty darn weak actually.  And yes, you could and you would do it.  Special needs parents are not superhuman.  We are fallible, and emotional, and just like everyone else we have a breaking point.   

 “You must have your hands full!”

Well, don’t we all?  Most of the time, this phrase is said in passing, which always confuses me.  If you see a Mama struggling, why not just offer to help?  

In my day we used to spank kids like that.”

Yes, in your day kids like that were also institutionalized and subjected to torturous “treatments” such as electric shock therapy.  You cannot spank a disorder like Autism, PANDAS, ADD, out of a child.  

Do you always let your kids have outbursts like that in public places?”. 

My kids are thankfully past this point, but when they weren’t, this is one where I used to always want to find a sarcastic response. I remember when just trying to get my kids in and out of a public restroom was harder then trying to bathe a pissed off feral cat coated in Crisco, and yet I would still get glares as if I was somehow doing something to cause it.  

And, while you might appreciate an apology, would you expect an apology from an amputee who takes longer getting on the Marta?   Or an elderly woman in a wheelchair who takes longer to get seated on an airplane? 

No one should ever have to apologize for being who they are. 
So….what should you say?  Many times the answer is nothing.  Or, better yet, it’s offering a helping hand.  Or a smile.  Instead of stares, introduce yourself.  Ask questions.  Really… isn’t that hard to just be kind.  

So many times we are told to consider what battles the snarky cashier woman is going through that we don’t know about, but the SAME should be said for the child in the middle of Aisle 4 in Kroger who is throwing canned peas down the aisle.  

I give horse back riding lessons to special needs kids, and when I tell people that, their first response is usually “Wow, that takes quite a gift.”. 

No.  It doesn’t.  I PREFER these kids.  I seek them out.  I also teach “typical” kids, and while I love them too, my heart is for my out of the box kids.  They fill my heart, and enrich my life.  

I pray that anyone still reading this long post is also blessed by knowing/loving/teaching/ or parenting a special needs child, so that your heart can be filled too.
For more ramblings, I wrote a blog post several years ago, back when my daughter was first diagnosed with PANDAS:.

An Open Letter to those who know/love/teach a child with PANDAS

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