To the Family Member Who Helps Us Love — Not Fix — Autism


IMG_1395 As parents we so frequently instruct our children to “just be yourself.” Over and over I impart this advice to my three young sons whenever they express anxiety about a new social situation. However, in addition to the boys, I have a daughter who has an autism spectrum disorder, and honestly I hesitate to ever give her this advice.

Though my husband and I, and a rare few, will always love and delight in Erin’s uniqueness, we know the world at large is not quite as accepting. Since receiving her diagnosis at 22 months, we, along with a host of specialists, have devised a rigorous regime and barked a litany of instructions to help her function within the parameters of what social norms demand. Quiet voice, hands in your pocket, no jumping, calm body, give the person space, look me in the eye, say hello, say goodbye, say thank you. It’s hard enough to assimilate and make friends as a typical kid – for children on the spectrum, their quirks, their language, physical and behavioral challenges can make it next to impossible.

Three years ago, however, Erin met someone who, for the first time in her life, demanded nothing from her – a friend who was not bothered by her tendency to jump up and down and flap her hands, who did not mind her difficulties with voice modulation and spatial relations – who in fact welcomed and encouraged her need for close proximity. This person genuinely loves and accepts her for who she is – for being herself – and has since showered her with a level of affection, devotion and patience that is beyond human – largely because he is just that.

He’s a dog – a special dog, named Pablo.

Erin calls Pablo, a black lab with big brown eyes, her “best buddy.” Sometimes, to the boys infinite amusement, she refers to him as “Smee” – because he often sports a red bandana like the deckhand in Peter Pan.

Pablo came to us through a program called Heeling Autism operated by Guiding Eyes for the Blind.  The primary goal of this program is to provide safety for a child with autism and specifically to prevent them from bolting or wandering in public. While this is a tremendous relief for parents who may have dreaded and avoided public outings with their children, the gifts the children and families receive from this program are manifold.

IMG_1025 One of Erin’s favorite activities is walking to town with Pablo. Erin doesn’t participate in any organized sports, so this serves as her central means of exercise. With Pablo at her side, they log several miles a week, his steady gait grounding and keeping her focused on the road ahead. He also helps her engage and connect with all who cross their path. They’ve become a familiar sight along the route. Cars honk, neighbors wave, kids and adults alike greet them along the way.

While Erin is the main recipient of Pablo’s time, attention and affection, our entire family has gained immeasurably from his presence in our life. Behind every child affected by autism is a family affected and forever changed by this diagnosis. While Erin’s three younger brothers have never known a life other than one in which their older sister behaves differently than their friends’ siblings, I know there are days they wish for her and for themselves a different experience. Every time we enter a new situation or setting as a family, anxiety levels rise, as we can never be certain how Erin will react.  How will she respond? Will something set her off? Will we have to leave immediately? Who will leave with her and who will stay with the boys? Or will we all just exit and call it a day? There’s a fair amount of uncertainty regarding even the most mundane of family outings.

IMG_1384 While a dog doesn’t change the fact that their sister has autism, he certainly has enhanced the equation. Pablo has plowed through many a social barrier not only for Erin but for her brothers as well. When approached by this gentle giant sporting his bright blue service dog vest, people naturally let down their guard. Pablo puts people at ease and places Erin in a position in which she must interact and communicate in a way that seems natural – almost typical. Children and adults alike stop to ask Erin and the boys if they can pet her dog. They ask his name and his age and how long we’ve had him. Suddenly a conversation is set in motion and smiles are exchanged as Pablo happily steps into the spotlight and the rest of us find ourselves experiencing a rare moment of calm within the confines of a public space.

Pablo has also been an answer to many years of wishes and prayers. Like many kids, ours wanted a dog – and had lobbed in this request, year after year, pretty much since they could speak. A dog for Christmas? A dog for my birthday? A dog for his birthday? A dog for her birthday? A dog in summer – or when we go back to school? No, no, no, and again, no. As we pointed out time after time, life was challenging enough taking care of them – not to mention Erin. There was no way we could ever have imagined introducing a dog to this picture — until we learned of a program that places trained dogs with families touched by autism.

Heeling Autism has not negated the challenges Erin or our family face, but it’s helped bring about a fair amount of healing by introducing us to someone who wants no one to change, who loves without condition, who stands resolutely by your side as you have a complete meltdown because you can’t find the purple one, who licks tears and wayward crumbs off your face and will play fetch when everyone else has gone inside, who will jump on your bed and keep you company as you sleep, who will listen to you read for hours and not correct a word, who doesn’t care if your socks match, or your shoes for that matter, who will walk for miles by your side and sit for hours as you search for just the right library book, who will never say it’s time to go, we’re late, you’re taking too long, stop acting that way – someone who just wants you to be yourself and stay close and when mom’s not looking, to share your hamburger.

Many people ask what it is exactly that Pablo does for Erin. There are many answers to this – and then there is only one, which Erin announces no less than ten times a day: “Pablo loves me!”

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I Would Have Made an Awesome Soccer Mom


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


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.

unnamed (23) 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.

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Why I Believe Only Special People Parent Special Needs Children


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.

lucy and merry

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


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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Dear Younger Me, Here’s What Happened to Your Son Who Didn’t Speak Until He Was Nearly 4


Every year I like to post something for my family and friends, to share what I’m feeling inside as we raise our son with autism and our daughter, who was diagnosed with ADHD and severe OCD. The one thing that resonates each year is that I’m lucky to be on this road. It’s paved with so many stories and love from others. Here’s this year’s letter that I wrote to my younger self…

Dear Past Karen,

Greetings from age 48. I bet you’re sitting on the floor of the living room right now folding laundry. Am I right? I can see you now. Jake is playing cars in his room, and Julia is watching an Elmo video with you. I figured you have a few minutes before the next therapist arrives for Jake’s speech session. I know the autism diagnosis hit you hard last year. I’m writing today to tell you about how things turned out and to let you know that most, if not all, of your prayers have indeed been answered.

In just a few months, Jake will start school at a place called Variety Pre-School. He will be placed in a class with other children on the spectrum. I know you’re going to be super nervous about letting him go, but trust me, it will be the best thing that ever happens to him developmentally. He starts to speak in sentences after eight months. He’ll stay at Variety for kindergarten, which turns out to be the best decision you and Ernie make educationally because it gives Jake that extra little push he’ll need for Central Boulevard Elementary. That’s right, both of your kids will attend the same elementary school as you and Ernie did.

Jake starts CBS in first grade and blossoms. He develops an incredibly shiny personality and is crazy about school. He starts to play school in the basement den every day. Your mom helps by setting up a classroom at her house too! Thank God for Grandma and Grandpa. They’ve pulled you through your darkest days since autism knocked on your door. Before you know it, Jake will graduate from CBS and you will be wondering why you ever cried yourself to sleep every night for two years and sometimes refused to leave the house or answer the phone. You woke up one day and started to give back at Variety. You join the PTA and start taking on more and more projects that connect you to school.

By the time JFK Middle School comes along, you wonder how you ever survived without some of your friends and their families. You realize that autism is a blessing rather than a burden. I won’t lie; those days where you feel cold and lonely do return from time to time, but they no longer control you. You control them by remembering that Jake needs you and Ernie to be strong for him and his future.

unnamed (20) Jake is now a sophomore at BHS and is the same age you were when you met Ernie. He’s a typical teen complete with worries about what his clothes and hair look like or who will talk to him at lunch. Does he still have rough days? Sure he does, but you’ve learned so much from the doctors you met throughout the years that you learn to get though these rough patches. Ready for this? Jake plays on a basketball team and is a Boy Scout. He volunteers at the District’s Summer Special Ed program as a counselor. The staff says the kids love him! This is the boy who never spoke a word until he was nearly 4 years old.

Julia has blossomed into a 13-year-old lady right before your eyes. True, she’s had her challenges, but she’s a treat. You love to shop with her and take long car trips so you can chat about every little thing. She and Jake will fight like cats and dogs, but they love each other more than you will ever know. Ernie? He’s a miracle on earth who literally picked you up and dragged you through each day. I seriously doubt you would have made it to where you are without him.

I’ll let you get back to the laundry. Elmo is almost over and you need to get Julia a snack before the speech teacher arrives. Just remember, life is good my friend. You’re blessed with so many gifts. Autism can never take them away from you.

Just thank autism for helping you to realize how special life really is.

Love,

Karen

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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