Life DOES Give You More Than You Can Handle — But It Gives You People to Help You Handle It

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When a child with special needs comes into your life, frequently you’ll hear people say life or God doesn’t give you anything you can’t handle. You may also hear “you’re so strong and an amazing mom; this child was given to you for a reason.” It’s not a helpful phrase to hear because as the years go by, you’ll often feel like you’re really not that strong – and it’s definitely more than you can handle.

The meltdowns and the sleepless nights will pile up. The behavior-modification plan will go awry, and the experimental dietary restrictions will slide. Years of toilet training will feel quite similar to banging your head repeatedly against a stone wall. You will lose perspective, and you will think you are a crap mom because you’ve been told life doesn’t give you anything you can’t handle. And then one day you will hear your daughter’s young therapist say to you: “I have a new idea.” And you will look up and notice the small army gathered around you working to help your child – and you will realize what life gives you is people.

In my daughter’s 13 years these people have appeared in a variety of forms. When Erin was a baby, before we learned of her disability, we had a sitter named Mary Lynn who remained undeterred by Erin’s failure to meet fine and gross motor milestones. Sensing my growing concern, Mary Lynn would smile and announce almost on a daily basis: “Next month she will walk!” Her enthusiasm kept me from dwelling and hopeful for Erin’s development and later, for the development of my unborn son. I went on to have a healthy second pregnancy. Will was born when Erin was 16 months old – and I credit Mary Lynn very much for that. We moved back to New York shortly after Will’s birth, and though we stayed in sporadic touch for a while, I feel I never got to thank Mary Lynn enough for how she helped me during that uncertain first year of being a mom.   

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Erin and Nadine

Just before Erin turned 2 she was diagnosed with an autistic spectrum disorder, and we were catapulted officially into the special needs world. Early Intervention sent a consistent flow of young therapists eager to sort out Erin’s sensory issues, strengthen her muscle tone and motor skills, increase her ability to attend and focus and help her learn to communicate. After about a year of trial and error with different approaches and people, a small and consistent team formed and rallied around us. Nadine, Arlene, Jackie and Jill — they served as Erin’s therapists but also as my touchstones about everything related to Erin and eventually her brothers. Parenting a child with special needs can be an isolating experience. In those early days when new moms gather for coffee and companionship, I relied on these women who arrived on a daily basis with bags full of books and games and strategies and deep wells of enthusiasm and engagement for both of us. They knew and cared for Erin intimately and were among the only people who could relate to a harrowing trip to the children’s shoe store or the impending stress of a holiday party. It’s trite but true — with them I laughed and cried and learned how best to parent my daughter.  Though I will never stop trying, I can never thank them enough. 

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Erin and Debra

While most of Erin’s army has been comprised of therapists and doctors and other specialists, a rare few have been civilians – other moms. After several years of exclusive in-home therapy, as Erin’s skill set grew, her team agreed that some monitored play dates with typical kids – beyond her brother — would be beneficial. At first the thought of brokering this with other mothers was daunting, to say the least. In New York City it’s safe to say that kids and parents even at the pre-school level are looking to move and play up, not necessarily down. Erin was prone to biting, scratching and throwing herself on the floor in fits of frustration. An ideal or highly sought after playdate she was not. She was not the last kid to be picked; she never even made the lineup. And as moms tend to be, I was protective of her and her brother — and to a certain extent the other kids –who attended the same school. I didn’t  float the idea past anyone until her second year at the school – and then so very gingerly – gauging reactions at school events or in passing on the street. If someone asked more than two questions about Erin – they were playdate potential. As a mom of a special needs child, you’re not looking for sympathy. That’s the last thing you want, need or have time for. What you do want for your kid is a chance – someone willing to take a risk. In Erin’s three years at her pre-school there were four kids who came home to play with her and four moms who took the risk of having their kids “play down” — Jenny, Francesca, Anastasia and Allison. Four moms who took the time to take a chance on another kid and a mom who didn’t have much to offer – aside from a bottomless well of thanks.  

The gratitude a parent feels for a person who takes the time to appreciate and help your child (typical or otherwise) truly knows no bounds. In the years since we moved from the city we’ve transitioned to a new team whose members we rely on to help Erin’s language, motor and social skills continue to evolve. Her weeks’ highlights include speech with Roanne, occupational therapy with Debra, physical training with Aresh, music with Angeline – and countless walks to the library with Michelle. Even a trip to our kind and gentle pediatrician, Dr. Hahm, elicits smiles from Erin. 

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Erin and Catharine

And finally — no weekend is complete without a trip next door to see our neighbors, Karen and Tom, who welcome Erin as joyfully as they do their own children. As they and their kids — Catherine, Tommy, Annie and Gracie — greet her with bear hugs and extend invitations to share their books or bake brownies, Erin claps her hands in delight and suddenly life feels lighter. There are no advanced degrees or specialized training required to be a friend to a child with special needs – just a big heart and a person willing to open their door. This is not easily found. There are no adequate words of thanks.  

It is no easy journey – no parent expects it to be – but then there are the people who appear and offer you and your child their time, their understanding, their expertise, their patience, their optimism and their love – and while it takes your breath away, it also builds you up. Gradually you feel that maybe you can handle it and, who knows, even take a stab at being that amazing mom – all thanks to them – the people that life or God give you along the way.

For all of November, The Mighty is celebrating the people we don’t thank enough. If you’d like to participate, please submit a thank you note along with a photo and 1-2 sentence bio to [email protected].

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The Holiday E-mail All Parents of Children With Special Needs Should Read

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Ah, the holidays…

They always end up being so hectic and stressful. Add a child with autism in the mix and things become even more chaotic. I wrote to our therapist about my daughter, Lila, and Christmas. The truth is, the gifts mean nothing to Lila. She couldn’t care less. Know what she wants for Christmas? Her balloons and ping pong balls and for Mommy and Daddy to be at home playing with her.

We all have these preconceived ideas about the holidays and what they should look like. Baking cookies with our children, watching their eyes light up while we explain Santa and the reindeer to them, listening to Christmas music, decorating the tree together, having a picture taken with Santa, looking at Christmas lights, visiting family, all while our perfectly wrapped presents sit under the tree. And we don’t stress – we just enjoy the holiday season, right?

Is that really how it is for anyone? I have my doubts. You know… we’ve already re-arranged our entire lives for Lila and her autism, but for whatever reason, it never occurred to me we could flip the script on the holidays as well. Our SoonerStart therapist, Janet, sent me the following in an e-mail. I genuinely believe it’s something all parents of children with special needs should hear, so I wanted to share it with you:

There are so many social norms and expectations surrounding the holidays. It’s like there’s a big book of items that are stereotypical and everyone feels if they aren’t ticking off a certain number of them, they aren’t doing it right. So many holiday things are hard for people with ASD. Different foods/cooking smells, longer travel times to infrequently visited homes with unfamiliar people and a different schedule, things you can’t touch, sitting on Santa’s lap, opening gifts, more shopping trips, all the forced social interactions, I could go on and on…

This is a great opportunity to ditch all the “normal” expectations and start to develop BETTER, new, fun ways for you all to do the holiday thing. Free yourself from all that garbage and follow her lead. You can celebrate in an AUTHENTIC and true way to your family. Your special twist on things will mean so much more to her than ANY gift. It’s kind of exciting and freeing isn’t it – to get to rewrite the book and tick your own things off? You are going to have a much better time than a lot of “normal” families. Makes you almost feel sorry for them… 🙂

So, please take that advice and do as you wish with it. I hope it helps you and your families like it has helped me. Our holidays won’t ever be what typical families would consider normal, but maybe – just maybe — they will be even better. Happy Holidays and much love to all of you and your beautiful, different little families!

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This post originally appeared on Dancing With Autism.

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I Would Have Made an Awesome Soccer Mom

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I had a few hours of free time on Sunday, and because I lead a very sexy life, I used the time to clean out my pantry. It’s a little room off my kitchen that has, over the last six years since my son came home, transitioned from a cute, chandeliered office/pantry to an enter-at-your-own-risk-I-can’t-be-responsible-for-what-falls-on-your-head room. It was time.

Photos, party supplies, glue guns, three coffee makers, expired cupcake mix – I sorted and filed and moved and tossed. I was on the last shelf when I yanked down a big, big box marked “ice cream social.” Huh? Two things: one, why do I have a huge box marked “ice cream social”? And two, I don’t even remember being the person who had time to appropriately label stuff in my pantry.

I opened the box, and inside was everything you need for the coolest kid party ever. There was a shake maker, snow-cone machine, cotton candy spinner and a cake pop baker. Long-handled spoons, ice cream bowls and a bright table cloth with ice cream cones printed on it. At the bottom of this box — the cherry on this surprise sundae — was a lime green pedestal that held six small bowls for ice cream toppings. Sitting in the middle of the spinning pedestal was a ceramic cupcake with a removable lid for hot fudge or caramel or strawberry sauce. It was summer and Pinterest and laughing children in one clever serving piece. It was darling.

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I wanted to throw the darling cupcake as hard as I could against the wall.

Instead, I sat down next to the box called “ice cream social” and cried.

I remember this stuff. I bid on it at a silent auction years ago, back when ice cream socials and impromptu play dates and birthday parties had starring roles in my parenting plan. Back before I knew that my son’s meltdowns were not a phase and back when I thought he played by himself because he was shy. Back before I had any idea that I would not be a soccer mom but a special needs mom.

What I have here is a box full of plans for a kid I don’t have. Some days, like today, it makes me sad.

I was crying for my son, but I’ll admit I was also crying for me. Instead of six different ice cream toppings always on hand for my son’s friends, I have an endless supply of pens for his therapists. Instead of being the house that everyone comes to, we are the people that are never home. Instead of bike rides, we have speech therapy; instead of swim parties, we go to OT.

Do I begrudge this? Not ever. But is this what I planned? No. Every once in a while, not very often, but every once in a while, I give myself permission to grieve for the life I don’t have, to think about the mom I don’t get to be.

I wrapped up the cupcake and put it back in the box. One day. Maybe. In the meantime, the sweetest boy in the world was on his way home. As moms go, I think I’m doing OK. Ice cream socials are fun, but my son needs a mom with a backbone, some fight and a strong voice. I’ve got that.

But just so you know, I would have made an awesome soccer mom.

Sincerely,
Becca

This post originally appeared on Sincerely, Becca.

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When My Daughter Graduates High School, This Is (Part of) the Speech I’ll Make

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unnamed (22) When I was much younger, I used to practice my Oscar speech. You know the one: “I’d like to thank the Academy…” 

These days I dream about a much different speech.

My husband and I often talk about how cool it would be to throw a party when our daughter graduates from high school. We’d invite every single therapist, teacher, aide, doctor, friend, relative and anyone else who has helped her (and us) along the way. Annabel has Dup15q syndrome, which often comes with a variety of developmental disabilities and challenges including autism, seizures, hypotonia as well as anxiety and sensory disorders.

She’s only in second grade, mind you, so we’re going to have to rent out a stadium. I’ve already started preparing my speech.

Here’s what I have so far:

Thank you to Annabel’s first therapist, who set the tone for all her future therapies. You had incredible energy and a no BS attitude that proved to us Annabel could be pushed through her stubborn streak.

Thank you to Annabel’s preschool teachers who greeted her with open arms and made school a far less scary place for Mom and Dad.

Thank you to my best friend who called me every single day for at least two weeks after we got Annabel’s diagnosis, just to check in and let me vent or cry or not talk about it at all.

Thank you to my brother for teaching Annabel the history of rock and roll.

Thank you to the girl from Annabel’s school I ran into last summer. You asked how Annabel was doing, and it melted my heart because Annabel just isn’t on most of her peers’ radars.

Thank you to Annabel’s principal who wears the best ties and lets Annabel carefully study them every day.

Thank you to our neurologist who confirmed what we knew — that Annabel is smart and more than capable of learning how to change her own behavior.

Thank you to every occupational, physical and speech therapist, who despite being kicked and slapped and bitten, sat in meetings and told us how much they adore our girl, how they love working with her and how much they’ve learned from her.

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Thank you to every parent who has ever seen me struggling with Annabel when she’s having a hard day and given me a smile or a nod or an “I get it” look.

Thank you to our family for supporting us wholeheartedly and unconditionally.

Thank you to Annabel’s soccer buddy who told me in her sweet teenager way that she admired how much I love my girl. It made my night.

Thank you to Annabel’s one-on-one aide who, for the last four years, has guided Annabel through the ins-and-outs and ups-and-downs of school, who’s guided me through classroom dynamics and school politics, who’s loved Annabel like her own. We will be forever grateful to you.

Thank you to my husband, who kept his promise to me the night of Annabel’s diagnosis — that we were going to do something good with it.

Thank you to Annabel’s brothers, who have shown patience, compassion and understanding beyond their years.

Thank you to Annabel for teaching us how to be the strongest, most patient, most badass parents we can be.

There are and will be countless others, but this is a good start.

It will be an enormous party.

The Mighty is celebrating the people we don’t thank enough. If you’d like to participate, please submit a thank you note along with a photo and 1-2 sentence bio to [email protected].

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Why I Believe Only Special People Parent Special Needs Children

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Recently, a longtime friend reached out to me to let me know she was expecting a Sensory Processing Disorder diagnosis for her kiddo. She was feeling all of the things you feel when you are told your child is different, and she was wondering if I had any suggestions or helpful tips about how to begin their journey.

We chatted for a while, and it turned out she was already aware of several things that would be helpful for her child. (I wasn’t surprised; she’d always been a smart, tough go-getter.) So I put in my two cents, wished her luck and asked her to keep me posted.

The conversation stayed on my mind for the remainder of the day. I thought of the beginning of our journey. In my mind, I went over all the things we’d learned, doctors we’d seen, therapy we’d done, changes we’d made in our lives and lifestyles… and it was the first time I’d stepped away and looked at it from a distance, rather than just feeling it from the epicenter. It was the first time I’d realized just how far we have come.

I’m proud of us — not just of Lucy, who has done an enormous amount of work, but of our entire family. Each of us has had to sacrifice and grow and love each other better than we might have if we hadn’t been on this crazy ride together. It was one of those shifts in perspective that all of a sudden illuminates a reality you hadn’t considered before. It was a gift.

Then a few weeks ago I read an essay by the mother of a child with special needs. The essay described her irritation when people told her that, “God only gives special kids to special people.”  She knew those folks were saying it with only the best of intentions, but believes that kids with special needs can be born to anyone, and some of those people go on to do horrible things to their children. I enjoyed the essay and the ultimate message, but something bothered me about it, and I couldn’t put my finger on exactly what it was.  I thought it over for several days, and then I had another lightbulb moment.

Because I’d said something along the lines of, “God only gives special kids to special people” to my friend in our conversation when she’d reached out to me days before. Was I a jerk? I am the parent of a child with special needs; I should know these things. Am I bothering other parents when I say that? It’d never bothered me when someone said similar words — but why not?

I thought again of our beginning — when we were searching for answers to questions we didn’t even know how to ask, before we had our diagnoses and we knew things were off. I thought about after — getting our diagnoses and facing the reality that we had a lot of work ahead of us, with uncertain outcomes. So many questions. Not the least of which were the soul-wrenchers: “Why her?” “Why us?” I wanted to feel that there was some purpose to it all and that it wasn’t some random twist of fate — that maybe there was something special about me and her — and me and her together.

Now, I have to admit that while I consider myself a spiritual person, I will rarely, if ever, bring God into a conversation. I’m not one for the white beard and the throne and the meting out of judgment. And I run in a pretty secular crowd, so no one has ever said that exact thing to me before because that’s not the way we speak.  But I have said that it takes a special person to parent a special child. And I believe that. It gave me comfort when I was looking for answers years ago, and it gives me comfort now during the hard times.

I think communicating it that way conveys the good intention with better words. It’s just a little shift in what can be said, but it means something different. True, anyone can have a child with special needs but instead of “have,” which is passive, “parent” can be active. Not a noun, but a verb. A doing. And if someone does a horrible thing to a child, that is not “parenting.”  That is simply criminal.

Truly parenting a child with special needs absolutely requires a special person. Someone who has strength, patience, resilience, persistence and deep wells of love for the unique person whose care they’ve been given.

After talking to my friend, I realize that she’s exactly that kind of special. She’s an intelligent, fierce mama who will be the absolute best advocate for her child. After looking back at our long, long road, I realize I’m that kind of special, too. Our whole family is that kind of special, and there’s nothing passive about it. We choose it and act on it every day. It doesn’t mean we’re perfect or that we get it all right all the time, but it means we’re purposefully trying hard and doing well by our special needs kiddos. Thinking it over put me at peace with my words.

So if you’re like me, and you want to give some words of comfort, particularly to someone who is just starting on their journey, I think it’s OK to let them know you know it takes a special person to actively parent a special child, regardless of how that child came to them. God, genetics, adoption, whatever. Because it does take somebody special. I don’t think I’ll ever be convinced otherwise. And you know what? If you chose to read this today, I’m willing to bet you’re pretty special, too.

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This post originally appeared on Mom in Uncharted Waters.

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To the Stranger Who Sits Near Me During My Daughter’s Swimming Lessons

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Res float Dear familiar stranger,

I don’t know your name.

You don’t know mine.

You don’t know my daughter’s name or her struggles, other than my quick explanation: “she has developmental delays.”

And I don’t know your grandson’s name.

But every week we sit there among dozens of other strangers and watch our little ones through the glass at swim lessons.

They’re in different classes — to be honest I don’t even know which class your grandson is in. But you watch my daughter and know what group she’s in.

You know when there’s a new lifeguard sitting next to her at the pool, and you look at me to make sure I see they aren’t paying enough attention to grab her when she willfully steps off into the water. Thank you.

You sigh a sigh of relief when the lifeguard is watching and plucks her out without a second’s hesitation. Thank you.

You smile when it’s her time to swim and she high-fives the teacher. Thank you.

This last week you cheered out loud, before I even did, when she floated for ten seconds on her own. Thank you.

You told me she was doing great. Thank you.

I love that you cheer for my daughter with me. It warms my heart.

Thanks,

The Special Needs Mom Who Doesn’t Feel So Alone at Swimming Lessons

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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