To the Special Needs Parents Who Feel Excluded

Dear mamas and papas,

This is not an easy thing. The world of special needs is sometimes more than we expected. But you are strong enough for this.

You are a rock.

In our lives, things are different. Most things, I’ve come to learn — having a second child now — are different. Where I once panicked about what to look for, I now have little concern. I’ve come to laugh when the doctor says, “Oh, that’s normal.” I wonder if they remember I have no idea what that word means.

For special needs, there is no normal.

I do not expect others to live with the same understanding as I have — the same sensitivities, the same fears. But I do expect respect for my feelings. In fact, I demand it. Friends have come and gone, and for that I both weep for my social life and for their inability to cope. And, some days, for my own weakness. Sometimes, we come across parents who are not able to accept our strength. Perhaps their own child is not doted upon as our own, or perhaps they are so different that others feel they are too fragile for company. These parents often forget the doting is during our darkest hours. The hours we’ve spent waiting in post-op rooms, researching medical terms we found in reports, trying to diagnose images we have copies of before appointments. Falls that we cannot brush off, circumstances we aren’t sure are “just a toddler” or a neurological issue. The days our kids are screaming and it’s not because they’re tired, it’s because they cannot hear, or cannot communicate, or are in pain and cannot describe it. Oh… those are the days we wish it was a temper tantrum. We wish we could appease their broken spirit with ice cream and cuddles.

Let me tell you a story, before I move on:

I met a mom… You may know the satirical, albeit true, way moms sometimes have to go about making friends. We often court each other — maybe coffee at the playground a few times, then the kids nap at one house or another while we gab about the family. Before you know it, we’re out to wine without the kids and, well, the rest is history. Except, with this mom, it was different. It started with a little group I was in, we all went to a house, or met for coffee. Our kids were still at that sleep-anywhere-stage,  so they were easy. I wasn’t particularly close with anyone, but we’d gone to one woman’s house a few times. And then, I was CC’d by one of the moms on a group email invite I’d missed. Only, I wasn’t missed by accident, as I found out.

I arrived at the gathering with a box of crackers and grapes, and with a terse smile on the host’s face. I was confused. Was it OK we are here? I asked. She nodded and moved away from the door. I placed a blanket on the floor and my daughter, Addie, on her belly. The other children were crawling and pulling up onto things at this point. Addie was just lying there. Smiling and cooing. Trying to turn herself and enjoying her favorite teether. Every now and then I moved her out of the way of another child, or a mother rushed over to her child touching my own, her voice quavering, “DON’T TOUCH HER!” I tried to tell them it was OK, that touching the bow in her hair wouldn’t hurt her. But her head, they would say.

At one point a mother was discussing testing for FTT (failure to thrive). A few moms offered some advice or asked who to call for more information. I offered up information about Early Intervention and mentioned we’d gotten great testing to help guide us. I was shocked to be met with: “Our problems aren’t like yours.” I bowed my head and silently finished my cup of tea.

When it was time to go, I loaded Addie into her infant seat. She was the only child still in one, as the other children had grown out of their own, so we were the last ones to leave the house. Before I picked the seat up, the host pulled me aside to tell me that she’d called her homeowners’ insurance company about having Addie over, and they said she was a risk.

I was too stunned. Too hurt to say anything back. I left without a word, but a smile dashed from my face almost before I could turn away. I cried all the way home and never spoke much of it. My meetings stopped. I never went to another coffee or playground date again. I’m not sure if I grieved losing some of the only friends I’d had since giving birth, or that people had no idea what having a child with special needs meant for me. But either way, I grieved.

And so, many parents will not understand. They will not get it. And that’s OK. Our first job is to advocate for our child as we want them to advocate for themselves. This is hard. This will not come easily. But it, like any other skill you practice, will come.

I urge you to not feel like you need to answer every issue right away — or even at all. I encourage you to move outside of your comfort zone for love, support and friendship. Find your community, but do not segregate yourself. Your child is as diverse and unique as you. They are more than their glasses, wheelchair, dwarfism, learning disability… While it is amazing to have friends who have been there, it’s really special to have friends who listen to your concerns and then voice their own. Sometimes their issues will seem so minuscule to you, I’m sure, but remember, some of your child’s needs will scare the living daylights out of them.

This is all OK. This is, dare I say it, normal.

Your life is not special needs or disability, but it is a part of it. You are OK. You are making it, but you cannot make everyone go with you. And that’s hard. This is the part that will hurt. The part we want to shield our children from. The part we feel every inch of pain of, too.

Exclusion still happens. Every day. Some days your child will not notice while you see it in every motion. The kids may move faster, or climb and roll and tumble, where your child cannot — and maybe never will. I applaud you for not giving up. For still going into situations like this knowing that the interaction is good for you and your child. He or she is learning that in the face of a challenge, they can still find happiness.

I happened to have the joy of seeing my child evolve this winter when she grew tired of running during a sports class. She sat instead and cheered on each individual child — enthusiastically yelling and clapping for them to run the bases while she rested. When she was able, she rejoined. This became her thing. Sharing more than just her ability to cope, but her sportsmanship, too.

I don’t believe it’s ideal to be different in our society. Standing out is something we beg to celebrate but are often shunned for, too. But standing out, once you’ve found your footing, is also rewarding. There will still be nights in the hospital, illnesses and pains that other friends will never endure. Our children will lead a different life from others — perhaps even from their own siblings. But this is their life, and it is all they know, and that is OK.

You are OK. You are doing this.

You are a rock.

Follow this journey on A Is For Adelaide.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.