Why My Daughter’s New Bike Brought Me to Tears

200
200
2

As much as I love my daughter, I can’t afford to buy her some of the simplest pleasures that every child should enjoy — for instance a bike.

When all the other little girls on our street were getting bikes with training wheels, my little girl was making do with an old-fashion pink scooter. You see, going to Wal-Mart and picking up an 80, 90 or even a hundred dollar bike would not work for my daughter. My little girl lives with autism — even if I purchased her a bike, her brain wouldn’t allow her to push the pedals.

So at 4 years old, she was struggling to keep up with the giggling sweet girls on the block. Even as she pushed her scooter to the max, the other girls were faster with their peddles. As the year progressed, the training wheels came off one at a time. My child was left out, not able to keep up as the girls and boys rode to the end of the block and turned around. I watched my child make it half way down the block and push her scooter to the ground, throw a tantrum and cry because she wanted a bike too. And even though she’d tried repeatedly on her friend Riley’s Barbie bike, she couldn’t make her legs push the pedals. She was so frustrated, and these little missed opportunities were breaking both of our hearts.

Then, an opportunity came out of nowhere — our new next-door neighbor was a physical therapist at a center that didn’t take our insurance. She watched as Gabby threw down her scooter and began a tantrum on her front lawn. She introduced herself to us in the midst of my child screaming, “It’s not fair… I want a bike of my own!” She gave me a small card and told us to come by tomorrow and get measured for a trike. She worked with an organization that gave away trikes to children with special needs. I’d heard of these types of trikes — they weren’t in our budget nor did insurance pay for them. They were out of our reach.

I did call the next day, expecting my neighbor to have forgotten our conversation. She picked up the phone and told us to come on over and get measured. We went, and 30 minutes later my child was jumping up and down at the opportunity of a shiny new bike.

Three months had passed when we finally got the phone call that she was receiving a trike. A local appliance company in our community had sponsored it. We showed up at the beautiful country club in our area for a lunch banquet where she would be awarded her trike and meet her sponsors.

We barely made it to our table when our child started to melt down from the noise of the room and the amount of people staring at her. She had one of her biggest tantrums I’ve even witnessed in public. I scooped her up and told the presenter we were not going to be able to attend. I gave a rushed, “Thank you so much!” to our sponsors and carried my child back to the safety of our SUV. My husband came back out 30 minutes later and said the trike was loaded in his truck.

We followed my husband home, and every time Gabby got a glimpse of her new trike she would say, “I did it, I got my new bike… I did it.” She was thrilled that she made it through the door and got her trike. I tried not to focus on the scene we’d made at the country club and all the people who had stared at us for the fact that we were not even able to sit at a table in a crowded room for just five minutes. The truth was, we did have a $2000 trike in my husband’s truck right in front of us, and we were taking it home. My girl was finally going to have a bike.

An hour later, all the kids in the neighborhood were gathered in our driveway to watch as my husband tinkered with the new trike, adjusting it so Gabby could ride. This is the moment our world changed just a little bit.

All the kids from the neighborhood and Gabby’s best friend, Riley, were playing in the driveway. They were going to leave and ride their bikes to the end of the street. This is usually where I’d watch Gabby look longingly as all the other girls ride away.

Not today. My girl put on her helmet and told me to get her going. We rode with all the rest of the girls to the end of the block and turned around. Although we were not as fast as them, they kept paced with Gabby, and I got to watch her laugh and giggle with all the other girls.

Thank God for oversized sunglasses because I had tears steadily flowing down my eyes as we walked. I know she will never be just like everybody else — her challenges will always make her a bit special. But just to be doing the same thing at the same moment as everyone else was perfect. For the first time in a long time I had tears of joy flowing down my eyes and not tears of sadness. I was just so happy; this trike was not only a wonderful gift, but it was a blessing for my girl.

Gabby's Trike

For all of December, The Mighty is celebrating the moments we gave or received a gift that touched our lives in a special way. If you’d like to participate, please send a blog post describing this moment for you. Include a photo and 1-2 sentence bio to [email protected].
Hint! Some gifts don’t come in packages.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

200
200
2
TOPICS
JOIN THE CONVERSATION

RELATED VIDEOS

This Young Woman Captures What Depression Feels Like in a Beautiful and Heartbreaking Way

2k
2k
3

This is a powerful and unflinching look at a very serious condition.

Sabrina Benaim, 26, is a spoken word poet from Toronto who struggles with depression and anxiety, according to her website. In the performance below, she spectacularly articulates what it feels like to live with these conditions and the frustration that comes from trying explain herself to others.

Watch Sabrina Benaim’s “Explaining My Depression to My Mother” at the 2014 National Poetry Slam in the video below:

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. Head here for a list of crisis centers around the world.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

2k
2k
3
TOPICS
JOIN THE CONVERSATION

When I Started Eating Lunch With My Classmate With Down Syndrome

2k
2k
17

Differences surround us. They can define us. They can hurt and separate, shape us and inspire us.

In fifth grade, the last thing most people want to be is different.

That’s when I met Caleb, as we were waiting for the bus to take us home. Caleb was obviously ready for the school day to be over; he kept saying, “Bus, bus, bus.” I was unsure what to think at first, but I knew, much like me, Caleb wanted the day to be done. But that seemed to be where our similarities stopped. He was unlike most of the other fifth graders I knew.  

Caleb has Down syndrome.

He spent most of his time in a different classroom than the rest of the other students. He often sat in a different section of the cafeteria. He spoke differently; he acted differently.  

But our differences didn’t scare me. In fact, our differences brought us together.

Around this time, I became involved in the Adaptive P.E. program at school. The program was voluntary and allowed me to work with my peers with special needs. I definitely wanted to be a part of it. Not only did I enjoy the program, but I learned more about Caleb.

photo (18)

Every day at lunch, I would sit with him. I thought this would be tough at first, because I was unsure how to interact because of our differences. But it was actually fun. After lunch, I would walk Caleb to P.E., and we would play together. We would bowl. We would dance. We would laugh.

And I began to look forward to spending time with him.

Others didn’t understand what was on Caleb’s plate, like I did. Others judged him. They looked at him with strange faces. They excluded him from activities.

One day, at recess, this all changed.

Caleb and I ventured outside to play soccer together. I assumed the game would only be the two of us. But much to my surprise, all of the other kids joined us. And this time, no one judged Caleb. No one made fun of him. No one left him out. It was Caleb’s soccer game, and I stood in amazement and happiness when I noticed the other kids give Caleb the ball and let him score. 

Caleb has taught me that it’s OK to be different. He’s reminded me to treat others the way I want to be treated. I know, without a doubt, he is out in the world somewhere, teaching others this same lesson.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

2k
2k
17
JOIN THE CONVERSATION

My Son Did Something Naughty… and My Heart Swelled With Joy

1k
1k
10

IMG_6746 I’ve been to many parent/teacher conferences. I have three typically-developing children — well-behaved, high achievers. In these later years of their schooling, I’ve received a lot of forms with “No conference necessary at this time” checked off. In the early years I went in to confer with teachers, who, to my surprise, never wanted to talk about the sheer wonderfulness of my darlings. There was always a problem. Most of the time the problem was talking in class.

“I’ve tried him in every seat in the room,” my oldest’s first grade teacher complained in her beautiful Irish brogue. “Finally I put him in the back and he talked to himself!”

It was the same with my two daughters. All I could do was say how sorry I was that they were disrupting the class, promise to talk to them, and do so. Then I waited for maturity and the passage of time to do the real work. I myself was often written up as the chatterbox, my name chalked on Mrs. Turtur’s blackboard circa 1976.

Now I have a son in kindergarten who doesn’t talk — or walk or see. When I go in for a conference (and it’s always necessary) I already know we won’t be discussing his sheer wonderfulness. The life and education of a special needs child is a continual problem-solving process, and I’ve become a de facto member of the Child Study Team.

Last year I went in to meet with T’s TVI (Teacher of the Visually Impaired). They’d been working on nesting and stacking cups. T uses an adaptive activity chair with a tray in these sessions, and Miss R. told me when he grows frustrated with the activity, T pushes the cups off of his tray with a sweeping arm motion.

“But Mrs. V. [my son’s aide] has gotten very good at catching the cups in mid-air and putting them right back,” Miss R. assured me. “So… lately he’s started throwing them backwards over his shoulder, instead.”

We looked at each other for a moment, and then I burst out laughing. Miss R. did too.

“I know… it’s wonderful, isn’t it?” she said. “So typical for his age, so creative…”

“So naughty,” I filled in.

It’s so hard for T to make himself known as a person in the world. At home we know him well, but it’s hard sometimes for us to understand what he wants and needs. He has only a few signs and sounds he uses to communicate. He relies on others to move him around and bring him things. We make so many decisions for T, and many of them are guesses.

I never expected that my heart would swell with joy when I heard my little boy was doing something naughty. I went around bragging about it for days. He’d given me the gift not just of rebelling against something, but finding a new and better way to rebel when thwarted. Sometimes, when I worry, I take that memory out and picture Miss R.’s impression of T tossing a cup over his shoulder with determination and aplomb.

Naughty — but also very nice.

The Mighty is celebrating the moments we gave or received a gift that touched our lives in a special way. If you’d like to participate, please send a blog post describing this moment for you. Include a photo and 1-2 sentence bio to [email protected].
Hint! Some gifts don’t come in packages.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

1k
1k
10
TOPICS
JOIN THE CONVERSATION

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

2k
2k
3

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!

christmasblog

This post originally appeared on Dancing With Autism.

2k
2k
3
TOPICS
JOIN THE CONVERSATION

I Would Have Made an Awesome Soccer Mom

4k
4k
19

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.

fullsizerender-2

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.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

4k
4k
19
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.