Being a Special Needs Mom is Lonely

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Sometimes I’m sad. Angry. Frustrated. Alone.

It took me about four years to say the words. “I am a mom to a special needs child.” I didn’t believe it–which shocked me. I feel like I’m usually self aware.

Occasionally my conversations with some friends go like this where I start off with,

“Oh man. S1 has really been struggling. It’s so difficult and he sat outside the church classroom and screamed and screamed while his teacher held his hands and tried to calm him. I heard him from my classroom down the hall and immediately went to help. I just….”

And then I see their nods aren’t real and their “Uh huhs” are faked.

So I stop talking and they don’t even notice or say some little offhand comment like, “Yeah.”

Yeah. That’s it. Or they get the deer in the headlights look where you just KNOW their thought patterns follow something along the lines of, “Wow. She really has no idea how to discipline. No wonder he acts so bratty. MY kids would never act like that…”

So, then I find myself saying things like, “He just gets overwhelmed! He’s just tired. He’s a good kid! The lights are too bright. Things are too loud!”

And their sympathetic nods aren’t for him, but for me–because I believe this “lie” I tell myself.

Because our children sometimes don’t look different. She doesn’t have different features that label her as “special needs” or “differently wired”. So, they don’t believe us.

If you’ve ever thought this about my child or anyone else’s amazing child, step back. Right now. Believe her! Don’t just believe her, LISTEN to her! Love her! She needs it. She fights a battle every single day.

Please, please don’t just change the subject. If it’s uncomfortable for you, ask questions until it’s not!

Please ask. Ask me now! Comment, email me. I’m here, happily here.

Here for you parents with tears in your eyes who know exactly what I’m talking about–who feel discouraged, lonely, and sometimes downright angry for being shoved to the side.

And for those of you who truly want to understand. Thank you. From the bottom of my heart.

Over the years I’ve gotten advice such as “It’s ok to spank, you know.” because S1 is having a melt down.

So, you want me to hit the child who already feels pain higher than usual and is simply reacting to stimuli that his brain cannot process? Slap my child’s backside because he already can’t understand his surroundings enough, so we should punish him for that and causing him more pain will “snap him out of it”?

I fully believe in discipline, but not some of the “advice” I’ve been given.

Don’t give me advice. Give me love and maybe a few hours out of the house.

We moms of special needs already feel ostracized and different ourselves because we have to bear hug our child in the middle of Walmart on the floor to calm down the sensory overload (aka freak out) while someone stands by recording us on our phones. True story of a dear friend.

Or we can never plan ahead for play dates because we don’t what that day looks like for sensory and emotions. And sometimes we cancel or leave early. Then we aren’t asked back.

I’m sorry for those times. I hate he had a “tantrum” loudly at your house. But I’m never sorry for my child’s behavior. It’s never intentional.

I am his advocate. Who is mine? Who is yours? Can we be each other’s?

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