A Letter to the Sibling of My Child With Autism

919
919
0

There’s so much to say to you. You grow up in the same house as one they call “special,” and that carries more weight than we understand. It means your parents’ eyes sometimes look past you. That we take it for granted you’re whole even when you’re not. It means you give and give and give. Every big sister shares with her siblings, but most of them don’t give away their entire portion. You do it. Often.

You watched your brother grow bigger. We had that talk, introducing you to that mysterious word — autism” — but you already knew something was different. When did you figure it out? Was it when you saw other boys trying to play with him? Or when he threw himself on the floor and screamed in the lobby of the bank? I hope it was something like that and not something we, your parents, did. Because I’m sure you saw the change in us, too. We traded in our laughter for moments of dark clouds and chronic busyness — not just from the doctors’ appointments, but from the other appointments, too. The ones that sometimes took our joy and concentration even when we sat next to you on the sofa.

Since those days, you have forgiven much. The family’s attention has been fixed on your brother. He absorbs so many resources: concern, affection and especially time. You’ve had to settle for out-loud readings in the living room and the occasional daddy date at the movies. But you treat those consolation prizes like championship trophies. The way you act, the dollar theater might as well be Disneyland.

You’re not perfect, I know. You struggle with all of this, even though you hide it. If there’s one thing I fear, it’s that you bury it too well. Many in your situation might grow up to resent their childhood and their parents for not seeing them. And while I wish there was some way to ensure that this won’t happen, I can at least tell you this:

We do see you. We see how you buckle your brother’s seatbelt on the way to school. We see you tickle him and chase him and laugh with him. We watch you lead him by the hand through the noisy crowds of kids and grown-ups. When he pulls away from you, you call him back with care and patience in your voice. You read to him, you cuddle him and every day, you teach him.

You teach us, too.

While we struggle to understand and accept your brother’s condition, you prove again and again that love is infinitely richer than tolerance. For unlike tolerance, love chooses to engage, even when there might be no positive response. Love enters into the uncomfortable, the mysterious, messy places, and says “I love you. Even here.”

This is what you do so well. You teach the people around you how to love their brothers. We see that. Our friends see that. I believe God sees that. And all of our hearts are bursting with pride.

Follow this journey on Jason Hague’s blog.

919
919
0

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

When My Son With Down Syndrome Found True Inclusion at a Swim Class

7k
7k
7

Rightly or wrongly, I’ve decided I want my son, Wade, to try mainstream activities first before we try disability-specific ones. This is not a judgment about other parents’ choices. Different kids need different things. I have Plan A for Wade and then I’m prepared to go to Plan B if needed. I think it’s important to ask, “Why not?” before I ask, “Can he?” when I’m choosing an activity.

When I thought about swimming classes, I had thought about one-on-one hydrotherapy. And then I thought, just stick him in a class and see what happens.

When we first started, I was really apprehensive. I wasn’t worried about how he’d compare with other kids. I know he has developmental delay, and he didn’t need to be better than all the rest. But I do need him to have the space and time to hear the instructions and complete the movement in a way that doesn’t hold up the whole class. At the same time, I need to give him the idea of what we’re trying to do without rushing him.

I went down to the local swim school for a tour and a chat and launched into how Wade has Down syndrome and asked how much space would there be for him to learn at his own pace.

It dawned on me quickly that I was the only one worried about Down syndrome here. It just wasn’t a problem. He was 18 months old, but we would try him in the youngest class and just see how he went.

His teacher, Alex, was an absolute dream. We went at our own pace, and I took my time with each element of the class and made sure he was at least watching while I gave him a visual sign for each instruction. Each new milestone was met with huge celebrations and lots of cheering — mainly from me!

When we first started, we were given a big poster of all the levels he had to reach before he could graduate to the kinder class. It seemed like a lot. Every time he learned a new skill, we went home with a sticker to mark the occasion on the poster. I looked at the giant space that read, “You have graduated to kinder class,” and wondered if he would ever get there.

Some days were easier than others, and some days he loved more than others. But slowly and surely, he started getting better. He started getting more and more stickers, and I realized that with constant reinforcement and a bit more willingness for me to let go, he was learning really well. I’ll admit to letting go a few happy tears the day I took my hands away from his body and realized he was swimming on his own (with floaties and a belt) and loving it.

When we started back this year after the break, the center manager told me Wade was old enough for the kinder class.

The class without the parents in the pool?

“Do you think he is ready?”

“His skills are certainly there. I don’t see why not.”

We then had a discussion about learning how best to communicate with him, how to get and keep his attention and how to work toward making it happen.

We agreed Alex would take him one-on-one outside of class times to help learn how to communicate with him and see how he goes, then we would plan to move him up when we were ready.

Just like that.

No begging.

No fighting.

No applications for funding.

No special treatment.

No pretending he can swim and giving him a plastic encouragement trophy.

No forms.

No extra staff.

No medical clearances.

No sideways glances.

No rolling eyes.

No hesitation.

No problem.

It was just, “He’s eligible. How can we help make this happen?”

I was so stunned at how easy inclusion can be when people just get it! I didn’t even have to ask for it.

After a couple of weeks, he achieved everything he needed to move up and he graduated to kinder class. As we said goodbye to our old class, I lost it, sitting on the edge of the pool ugly-crying. This is what real inclusion feels like. It’s not a big deal; it’s just people recognizing what he needs and asking how they can help us get there.

I felt so grateful to get to an experience like this, especially when I think about how hard parents have to fight to get understanding and support for their kids in some mainstream activities.

This is what real inclusion feels like, and for all those unsuspecting teachers and coaches ahead of us in the years to come, this will be the benchmark I’ll be using from now on.

Leticia Keighley the mighty.2-001

Follow this journey on Embracing Wade.

The Mighty is asking the following: Tell us about a time someone went out of his or her way to make you and/or your child feel included or not included. 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. Check out our “Share Your Story” page for more about our submission guidelines.

7k
7k
7
TOPICS
JOIN THE CONVERSATION

What I Discovered Deep Inside of Me After My Lupus Diagnosis

180
180
2

Today I watched a movie full of young people doing active, energetic and daring things. They leapt, climbed, jumped and challenged themselves physically. I paused the movie at times to do my laundry, hauling it up and down the stairs. Sometimes it can be difficult or outright impossible. Today it wasn’t. Today was a good day. As I was heading up and down the stairs, it occurred to me there was a spring in my step and a surge of energy I normally don’t have. And then all of a sudden, it hit me.

That used to be me.

Before lupus touched my life, I was very active and energetic. I was bouncy. I would skip down the grocery aisle with a cart full of stuff. I went hiking. I climbed rocks. I would jump and skip steps, up or down the stairs. I would take the path less traveled because it was more fun and challenging. I loved to run, to feel my muscles flex and the air expand my lungs. I did all of this for fun. Because I felt like it. Because it was just me.

But things have changed since my diagnosis. Stairs are a challenge most days now. I almost never skip under any circumstances. I can’t run and chase and race my son like I’d always imagined I would. I can’t go hiking, horseback riding or rock climbing. I can’t even get to the rocks in order to climb them these days. It was difficult to accept the new me.

But today I realized something. The energetic me is still there. It’s inside of me, waiting and lurking. The person who loved to do Tae Bo, the person who laughed and danced with my son, the person who would step off the sidewalk just to step up on a rock and jump off onto the sidewalk again, is still there.

There are drawbacks to this discovery. Part of me is thrilled I haven’t lost that aspect of myself entirely. It’s simply buried beneath pain, tiredness and illness. But the flip side of the coin is that it’s a part of me I can only glimpse on rare occasions. It’s hidden and buried deep. It’s buried so deep my own son doesn’t even know the energetic me. If I suddenly were lupus-free, he would be baffled by my energy level, my bounciness and my goofy antics.

So there’s the inner me and the outer me. How do I keep myself intact, whole and sane under these conditions? I’m not sure I have the answer just yet, but it’s has to be here somewhere because I feel an amazing surge of joy when I realize I’m still my energetic self deep inside. That can’t be a bad thing, right? 

I refuse to lose what I now know is still a part of me even if I can’t access it. I may not be able to use these aspects of myself right now, but they’re still there. They’re still part of my identity, and I will hold onto them tightly as the treasures they are.

Julie Pruitt the mighty.2-001

Follow this journey on Lupus Rhythms.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? 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. Check out our “Share Your Story” page for more about our submission guidelines.

180
180
2
JOIN THE CONVERSATION

The Odd Advice My Mom Gave Me About Being a Special Needs Mom

629
629
2

Do you remember playing in the bathtub as a kid? The goal was not to get clean but to play until the skin on your feet and hands got wrinkly. Do you remember picking scabs, counting bruises or jumping up and down on the bed?

How about spending who knows how much time figuring out all the quirky little things our little bodies could do? This entailed sitting cross-legged with both feet on top of the thighs, trying to do a handstand or a somersault and climbing trees as high as possible until mom got nervous.

It didn’t matter how much time was wasted swinging at the park, talking to friends or playing basketball because there seemed to be an endless amount of time to grow up.

As an adult, time seems more limited. I find it hard to spend too much time playing make believe with my kids when there are piles of laundry waiting to be washed, dirty dishes in the sink and dinner needs to be made. It’s a shame because my kids will grow too fast, and the window of opportunity to have kid-fueled adventures is quickly fading.

Days after my son was diagnosed with an incurable disease called tuberous sclerosis complex, I cried to my mom on the phone. I told her I felt like I would never be able to move forward and enjoy being a mom again. She gave me what seemed to be odd but simple advice: “Next time he takes a bath, put on your bathing suit and take it with him. Put a bunch of bubbles in the bath and play.” She gave no explanation, and I wondered if she truly realized the magnitude of what I was telling her. How would this make my broken heart feel any better?

I didn’t really want to do it, but I knew my mom. She would make sure I did it, so that evening, we drew him his bath and filled it full of bubbles. I put on an old pair of shorts and a tank top and sat with him in the tub. He was only 3 months old, so I sat him on my knee and put the bubbles on his little nose and in his hair. His older brother stood at the edge of the tub and played with the bubbles as well. My oldest thought the notion of Mommy in the tub with her clothes on and covered in bubbles was too funny. I began to smile again. In the middle of the bubble-filled tub, I was reminded my newly diagnosed son was the same boy he was before we learned of his diagnosis. He needed all the things he had before, especially the best of his mommy.

The few minutes I spent acting like a kid didn’t solve our problems. There are days I fret, and I have had many more tear-filled conversations with my mom. But what it did do is remove me briefly from the fast-paced world of adulthood and remind me of why it is such a joy to have children. My kids are oblivious to the responsibilities of adulthood, as they should be, but I can’t be oblivious to their childhood. My children need me to be an adult, but they also need me to understand what it’s like to be a child. So sometimes I need to act like a kid. The laundry, dishes and dinner can wait wait so my kids and I can just have fun.

So if you’re reading this post, here’s my challenge to you: Go be a kid. Do it. Blow bubbles, find a park and ride on the swing. Make sure you lean back as far as you can on the way forward so it looks like your feet are touching the sky and say, “I’m flying!” Run up a slide. Hop from one piece of living room furniture to the other, pretending the floor is lava. Make a blanket fort or draw yourself a bath with way too many bubbles.

Yes, adulthood is about maturity, but it doesn’t mean all the fun of childhood should be lost. You will be amazed what a few moments away from adulthood will do for you. Make time for these moments. You will look back on them and smile. So go ahead and take a moment. Be a kid.

Danielle Myers the mighty.1-001

Follow this journey on CrossRoadTrippers.

The Mighty is asking the following: Tell a story about a time someone helped you and/or your child when you needed it most. 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. Check out our “Share Your Story” page for more about our submission guidelines.

629
629
2
TOPICS
JOIN THE CONVERSATION

6 Unique Ways People Are Raising Money for Epilepsy

69
69
0

In the United States, the cost of having epilepsy is estimated to be $15.5 billion yearly, according to the U.S. Center for Disease Control and Prevention. Epilepsy causes people to have recurring seizures and has many possible causes. It’s estimated at least 200,000 people are diagnosed with epilepsy each year, according to CURE Epilepsy. With epilepsy prevalent throughout the world, people are taking charge to raise funds for epilepsy research to ultimately find a cure. We love fundraisers of any kind, but people are constantly blowing us away with new and creative ways to support a cause close to their hearts. Below are nine fundraisers that really caught our eye.

1. Young Epilepsy Skydive

This fundraiser is best suited for daredevils. You can freefall from 10,000 feet at over 120 mph to benefit Young Epilepsy, a charity based in England. By raising a minimum of 395 pounds ($617.19), you can take the leap of a lifetime. Young Epilepsy works on behalf of children and young adults under 25 with epilepsy to improve their futures.

Stock image.

2. Lemonade for Livy

A lemonade stand with a punch. What began as a single stand to raise awareness for Olivia (Livy) Scheinman’s epilepsy has blossomed into a nationwide fundraiser. The event occurs annually during the fourth week in July, and this year all the proceeds are going to the Epilepsy Foundation. To help out, you can create your own lemonade stand to raise money and help spread awareness about epilepsy.

 

Please help Hailey and Livy make a stand against epilepsy from coast to coast! They need a lemonade stand or party in...

Posted by Livy's Hope on Tuesday, July 21, 2015

 

3. Charity Cupcake Challenge

On April 15, 2015, the Muir Maxwell Trust, an organization in the U.K. that provides support for families affected by epilepsy, launched a yearlong charity cupcake fundraiser. The challenge? Bake or buy cupcakes and invite friends over. Once your friends have been “cupcaked” they’re asked to make a 5-pound ($7.81) donation through a JustGiving campaign.

Cupcake launch Kennedy Cupcakes, Caley Cupcake, Biggins and Ann Maxwell

4. Pull Together For Epilepsy

It takes a lot of strength to live with epilepsy, and Epilepsy Resource knows that. On July 19 the Epilepsy and Seizure Disorder Resource Centre of South Eastern Ontario held an event called Pull Together for Epilepsy where teams competed to see who could pull a fire truck fastest and farthest. More than 100 competitors comprised 13 strong teams, and together they’ve raised more than $10,000 to support those affected by epilepsy and seizure disorders, Siobhan Bradley, the Special Events Coordinator for Epilepsy Resource, told The Mighty.

906053_970705779616504_2287408572313961272_o

1396790_970706282949787_2151949109708526495_o

5. Slash the ‘Stash

David Axelrod is an American political consultant known for his signature look — namely, his mustache. After 40 years in politics, Axelrod decided to end his facial hair era through a fundraising opportunity. He pledged to shave his mustache if donors could raise $1 million in just one month for CURE, Citizens United for Research in Epilepsy, through his CrowdRise fundraiser. Axelrod succeeded in raising $1,080,52, and he shaved his mustached on MSNBC’s show “Morning Joe.” “There are people that gave lot more than a mustache to epilepsy,” Axelrod said on the show. His daughter, Lauren, lives with epilepsy, according to The Chicagoist.


6. Beard Battle Against Epilepsy

If you like having your opinion heard, this fundraiser is for you. Every donation counts as a vote for whether Tex Morgan, a man from Texas who had epilepsy as a child, should shave, keep or trim his beard. In his fundraiser last year, Morgan only had the option to shave or keep his beard. He raised almost $600, and this year he accumulated more than $1,000. The fundraiser ended in June, and the votes decided Morgan has to shave his beard. All the proceeds go to the Epilepsy Foundation of Central and South Texas.

69
69
0
TOPICS
JOIN THE CONVERSATION

She Couldn’t Find a Toy That Looked Like Her Daughter, So She Made Her Own

2k
2k
0

Erin Wozniak is an artist and teacher who lives in North Canton, Ohio. Her daughter, Elyse, now 3, was born with microtia, a congenital deformity where the outer ear is underdeveloped, and atresia, a disorder that affects the development of the ear canal. As a result, she regularly wears a bone anchored hearing aid in her left ear.

Weesies
Wozniak and her daughter, Elyse. Photo via Weesie Pals Facebook page.

Wozniak wanted Elyse to have a toy she could identify with to help her feel better about wearing a hearing aid every day. But she quickly realized her options were slim.

“When it comes to bone-anchored hearing devices, there isn’t much out there that caters to children,” Wozniak told Oticon Medical, a hearing healthcare company.

Inspired to create something that could help her daughter, Wozniak picked up a sewing kit and made her a stuffed mouse with an attachable hearing aid.

“I never had any intentions of making these for other children, but I wanted to make her her own stuffed animal that would be special to her, and she just loved it,” Wozniak told Prosthetics Research Lab, an organization that creates facial prosthetics like hearing devices. “She loved it so much that she literally wouldn’t put it down. So I thought I should try making these for other children.”

The idea to start a business selling “Weesie Pals,” stuffed animal toys that have special needs to match their human best friends, was born.

Screen Shot 2015-07-22 at 12.13.24 PM
Elyse with the original Weesie Mouse. Photo via the Wozooly Facebook page.

Already-available Weesie Pals can be made with one or both ears affected by microtia — they come with a soft headband hearing aid or a behind the ear hearing aid.

WeesiePal6
Weesie Pal puppy wearing a headband hearing aid. Photo via the Weesie Pals Facebook page
Behind the ear
Weesie pal with behind the ear hearing aids. Photo via the Wozooly Facebook page.

At the request of a parent whose child has a digestive disorder, Weesie Pals are also available with their own ostomy pouches and velcro stoma as of July 2015.

Monster Weesie
Photo via the Wozooly Facebook page

“Everything that I’ve heard back from parents has been really positive, that their child really loves it,” Wozniak told Prosthetics Research Lab. “Seeing how happy their child looks with their Weesie Pal is very rewarding.”

WeesiePals5
Photo via Weesie Pals Facebook page

Weesie Pals are now available to families all over the world through Wozooly, Wozniak’s online store. Parents can send their ideas and design requests directly to Wozniak, who custom creates each doll. Ten percent of the toys’ proceeds go to The Ear Community, a nonprofit that supports people living with microtia and atresia.

Take a look at more of her adorable designs below:

Zebra
Photo via the Weesie Pals Facebook page
Fox
Photo via the Weesie Pals Facebook page
WeesiePals4
Photo via the Weesie Pals Facebook page

To learn more about Weesie Pals and check out more designs, visit Wosniak’s Etsy shop and Facebook page.

2k
2k
0
TOPICS
,
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.