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. Moments we would trade in for anything in the world- even our own lives. 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… I know you’ve heard all the stories of MBFFs- so 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, 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 Addie on her belly. The other children were crawling and pulling up onto things at this point. Addie was just laying 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!” they would yell. 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 special needs child meant for me, but either way, I grieved.
And so, many parents will not understand. They will not get it. And that is 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 special needs 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 miniscule 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 is 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.
It is not ideal to be different. No, of course not. 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.
Although I do not have a special needs child, I read your work because you do an excellent job of reminding all of us of two things: the challenges that you and your family are up against, but also that you and Addie have the same desire to belong as the rest of us. You have done a tremendous amount to educate the parents of children who do not have special needs and you continue to do so every day. I am cringing at the story you shared here, and I am so sorry for the pain these ignorant, insensitive women caused you. It makes me so angry. Addie is a tremendous kid, and you are a tremendous mom. Thank you for the unflinching look at this appalling behavior. I know you deal with awful comments on a regular basis and I admire your composure and grace in the face of it.
Thank you, Wendy! You are a wonderful supporter- we love you and the Poo! I am only composed because she’s watching. Thank goodness for the babes… they keep me rather tactful where I’d prefer not to be!
Chelley @ A is for Adelaide recently posted…An Open Letter to Special Needs Parents
Thank you for this. Thank you.
Claire recently posted…Doctor Who Tardis Starry night Coin Purse TWO STYLES by Miaclaire
Love you, mama!
Chelley @ A is for Adelaide recently posted…An Open Letter to Special Needs Parents
Hello Chelley, I always read but rarely send in comments. This was a very touching story. Although I have not had any other parents make those type of statement to me, I have certainly received these messages via the actions/behaviors of others parents. My son with dwarfism is going to be completing 8th grade in the next 2 weeks. Probably about 3rd or 4th grade he stopped receiving invitations for parties, playdates, etc – unless it was an all class event. Our youngest in Kindergarten also with dwarfism, adopted a year ago, is still a highly sought after play date novelty. We will not be surprised if the same drop off in invites to happen, to her, in a few years.
We are thankful for the friends we have made through LPA and DAAA events. Even though most are far away, it is great to have connections with others that get it. Thank you for sharing this story.
Novelty. That’s the word I feel sometimes now… almost fashionable to have a “special needs” friend, although sometimes we are rather inconvenient, especially when we wander so I can take Addie on height appropriate adventures. I know that invites will begin to end in the coming years, and my heart breaks for that… but we have amazing connections. Thank you for following. I truly appreciate that <3
Chelley @ A is for Adelaide recently posted…An Open Letter to Special Needs Parents
Hi Chelley, Your post touched me today and I had to respond – thank you for sharing! Although our circumstances are different, I can relate to so many of those experiences and feelings, and while I’ve learned to not be affected by them as much anymore, the memories still bring up emotions and it’s nice to know we’re not alone!
Just thanks:) Your family is precious and you continue to inspire.
Angie Martin
Thank you so much, Angie. <3
Chelley @ A is for Adelaide recently posted…An Open Letter to Special Needs Parents
This is really a lovely post. Thank you for sharing so much of your heart, your struggles and your wisdom. I can only believe that everyone who reads this will be the better for, I certainly am! It’s hard to walk in another’s shoes but you’ve given great insights that I’ll treasure!
Thank you for reading <3
Chelley @ A is for Adelaide recently posted…#JimmyFundWalk for Erica Shea
While I don’t have a child with special needs, I hate that you were treated like this. As though it was something that could be caught like a cold. There is so much ignorance surrounding all forms of special needs.
Rachel recently posted…A Crash Course in Wine
There really is… which is why I hope to just keep educating!
Chelley @ A is for Adelaide recently posted…#JimmyFundWalk for Erica Shea
Love this. None of my kids are special needs but I do know a few and it can be tough. This is quite lovely.
Jeanine recently posted…Nutrience Grain Free: Only the Best for our Girl!
What a great post. Thanks for posting.
What a great post! I cant believe someone actually said that though, how incredibly rude! BTW Addie looks adorable playing what my JJ calls basket hoop.
Jenn recently posted…Honeycomb Party Mix
I love this very much! I am a special needs teachers and this is so near and dear to my heart! Thank you for writing and sharing!
Cindy (Vegetarian Mamma) recently posted…Buffalo Cauliflower Dip – It’s snack time!
I know 2 couples with special needs kids and I’m amazed at their strength and quiet resiliency!
Danielle Wells recently posted…Weekend Wind Down Link Party #72
What a great reminder of how we should look at everything! What an unbelievable story you have and the strength you have along with your beautiful little girl is awe inspiring! Thank you for sharing!
Jeanette recently posted…Pleasing my Picky Eater with Strawberry & Banana Smoothie Pancakes
Great read! I truly inspire you. Thanks for sharing this letter of advocacy.
That is the most infuriating story I have ever read. What an awful way to react to a beautiful child. Although I’m sure it hurt, it was a blessing in disguise to know not to waste your time with such an awful person ever again. Big hugs to you and your wonderful little girl!
Amanda recently posted…Share Your SuperDad’s Story
You are so young but you have such a maturity about you. Your perspective and willingness to open your heart and share your joy, pain and truth is so refreshing.
Liz Mays recently posted…For a Limited Time #DennysDiners Offer a Sweet and Spicy Twist!
What a beautifully written post, it definitely inspires me. Your passion for it is what really seeps through! You are so strong!
No words for someone that could be so rude. I don’t have patience for anyone that is so insensitive. God gave you tremendous strength and you are using it in positive ways. Your basketball star is adorable!
I can’t believe that lady did that to you. I can’t imagine doing that.
Beth@FrugalFroggie recently posted…$25 Gift Certificates for $5.00 from Restaurant.com Expires 5/26/15
Oh my gosh I can not imagine someone calling homeowners insurance on a child. Special need parents are the most amazing parents!
Vera Sweeney recently posted…C’mon And #TestTheWater With Simple Skincare’s New Micellar Cleansing Water (over $200 giveaway!!)
I’m sorry that is a bunch of bull! What a cop out! I say good ridiance. You need friends in your life who care for Addie and who she is and who you are. We have a child in our mom’s group who is special needs and we all as moms celebrate all her acheivements. Every time I see Maya, I think how much better she’s doing with the help she’s getting now and I love her mother so much. I just can’t imagine pulling someone aside and giving them the home owners insurance line of crap! What a crappy person she is. Sorry, that made me angry…I just can’t believe there are still people out there like that.
Heather recently posted…The Craziest Facts About Ink
Your post is lovely and very touching. I don’t know why some people can do that.
That is a really sweet post. Your girls are so adorable too.
harriet recently posted…Did you know that there is a difference between a cosmetic and a drug?
I can’t believe someone would say that to you! I’m so sorry. Thank you for sharing this, although I don’t have a child with special needs, your words are still inspiring!
What a touching post, my kids are all grown and now having babies of their own, I look forward to being a grandparent. Your words are very thought provoking!
April Decheine recently posted…Unconditional Love with Nudges® Wholesome Dog Treats
Hats off to special need parents. It seems they have no rest. I know a friend who has a special need and it is not easy
Chelley,
Thank you for sharing your perspective and for sending this open letter to fellow special needs parents. My 7 year old daughter happens to be Autistic – but that is not who she is. I am navigating the world of knowing whether to tell parents of potential friends about her quirks and challenges, or whether to keep it to myself in the hope that she can make friends without an extra label attached to everything she does; it is a mixed blessing to have unique needs beneath the surface rather than out front for everyone to see and know, “Hey – you seem different.”
I am learning how to pray… My prayer now is, “Lord, please surround my daughter with empathetic teachers and peers who are willing to extend grace, even (and especially) when her own behavior is less than gracious.”
Thank you for putting thought and energy into a platform that lifts up and encourages parents of special needs kids. We need to be reminded to hope – not just for the sake of hope, but because we have a REASON to hope.
Liz Sagaser recently posted…Fireworks
Liz,
That is such a unique situation… wanting to protect, or help, or assist in letting her be independent. But to what degree? All those things running through our minds- it’s a wonder we don’t lose it as parents. Wanting to do what’s best can be hard to figure out, for sure. I love your prayer- I think I will adopt a similar version as my own. Being the best WE can be, modeling that for our children and their peers is the best thing we can do… that, and reminding ourselves and each other that we are doing a pretty great job! <3