Why My Daughter Would Be a Great Friend to Yours

128
128

My daughter would be a great friend to yours.

She loves bubbles, music and dance parties. Does your daughter like those things too?

blogger-image--737165852

She smiles and giggles and gives awesome high fives.

blogger-image-394907415

But so many times the fact that she uses a wheelchair or the fact that she doesn’t talk, makes people shy away from interacting with her.

blogger-image-961317593

I know she would make a great friend because her siblings think she’s fun to play with.

blogger-image-839183321

She may do things a bit differently, but if you give her a chance, I know your children would have a great new friend.

This post originally appeared on Joyful Journey.

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.

128
128
TOPICS
JOIN THE CONVERSATION

To the Mama Who Used To Be Uncomfortable by People With Disabilities

442
442

unnamed (90) Hey Mama,

Congratulations! You have a new baby boy, and he’s perfect. I know right now that will make you laugh and roll your eyes and cry all at the same time because you’re not sure what to feel. You want to be happy that you’re finally a mom. You want to celebrate his birthday. And all you can think about is what they’ve just told you — he probably has Down syndrome.

You don’t even know exactly what that means. You’re a nurse, so you’ve had one or two patients with Down syndrome, but you’ve spent little time with them, and, to be honest, you avoided talking to them as much as possible. People with disabilities make you uncomfortable, and you feel rude if you say the wrong thing or can’t understand what they’re trying to tell you. So you avoid them like the plague. You’re not alone, I promise.

What I can tell you is that your life is about to be turned upside down. You’re going to seek out people with disabilities. You’re going to want to read all about them, to read their parents’ blogs, to smile at them in the grocery store with a knowing grin. A year and a half from now, you’ll be the one trying to comfort mamas just like you who are dealing with their own diagnosis demons. It sounds crazy, but it’s true.

You’re going to feel pain. There’s going to be lots of it. It’s going to hurt when your beautiful son gets wheeled away to the NICU because his oxygen sats are low and he’s in distress. It’s going to hurt when you can only hold him every three hours, for 15 minutes at a time because of his jaundice. It’s going to hurt when you have trouble feeding him, and he won’t nurse, and he spends his first 16 days in the hospital gaining no weight. It’s going to hurt when everyone you know starts sending you articles about families of kids with Down syndrome, and you realize that you are that mom. You’re the “special needs” mom everyone knows. And that’s going to bother you for longer than it should.

You’re going to feel scared. Terrified, really. You’re going to be scared when you find out he has a heart defect and might need surgery. When they think he has sepsis. When you first see him with a big IV in his tiny little head. When you take him home, and he’s finally off the monitors and you can’t see on a screen somewhere that he’s breathing or that his little heart is beating, you will be terrified. You will spend 23 hours a day watching for the rise and fall of his chest. Even a year later, you’ll be scared. You’ll worry about what will happen if you go to playgroups and what about when he’s in school? How will kids treat him? Will you struggle with getting him the best education? You’ll always be a little scared. That’s OK.

You’ll experience joy. You’re going to feel joy when you take him to his first paediatrician’s visit and realize he’s gained more by nursing in three days than he did in nearly three weeks; you’re going to feel so triumphant. You’ll feel joy every time he goes to the nutrition follow up clinic and gets a gold star and especially when they discharge you from their services because he’s gotten so chunky. You’ll be elated when the cardiologist tells you, at a month old, they don’t need to see him again for a year. You’ll be even happier when, a year later, they tell you they no longer need to see him. You’ll feel joy every time that little head is resting on your chest and his little arms are wrapped around you, and you realize your entire world is right there in one little rocking chair.

You’ll feel encouraged. You’ll read the stories of others and be amazed at how far society has come and how much opportunity is out there. You’ll know anything is possible, that your son can be whatever he wants to be and that you’ll be proud to be supporting him throughout it. You’ll see what others are doing to promote awareness, and it will absolutely floor you.

You’ll have adventures. More super cool stuff will happen once you’re a mama than you ever thought possible. You’ll be on TV meeting Tara and Pip from Happy Soul Project, a blog you love. You’ll have his photo featured in a video for your favorite cloth diaper company. You’ll walk your first Buddy Walk and raise $1,000 for it. You’ll write a letter that will be featured in your local Down syndrome association’s welcome package. And you’ll help some friends who are having a baby who has health issues, too.

You’ll talk to everyone you know about Down syndrome. You’ll want to educate people and get the word out and introduce them to the possibilities that are so real for your child’s future. People will ask you questions, and instead of crying,or panicking, you’ll want to answer them. You’ll be open to educating people and helping spread awareness about how beautiful life can be, despite a diagnosis. Or maybe even because of one.

Seventeen months out, you’ll still worry about Thatcher’s future because you are a mom and that’s what we do. But you’ll look forward to all the opportunities out there and be proud of how he is and will continue to squash stereotypes (and break hearts in the process!). The thing you’ll worry about most will be how much you’re going to cry when he finally says “mama” or how he will treat his baby sister on the way. You’ll also laugh every time he flirts with a lady (extra points in his book if she’s blonde) and cheer him on as he walks around the living room pushing a chair.

Sometimes you’ll look back at the feelings you’re having today, and you’ll be sad you felt them, but you’ll know that grieving is a process and that you’ve gone through it and come out OK. You’ll know that how you’re feeling now… that’s normal. But it’s not forever. But today? Today you can cry. Today you can be sad because your future is not what you thought it would be. But Mama? It’s so much bigger and better than you ever could have imagined.

All my love,

Me.

unnamed (91)

Follow this journey on The Odyssey // The Incredible Journey of Thatcher Ulysses.

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.

442
442
TOPICS
JOIN THE CONVERSATION

This 13-Year-Old Built a Revolutionary Product — With a Lego Kit — to Help Blind People

126
126

When Shubham Banerjee learned that the average Braille printer can cost upwards of $2,000, he knew there had to be a way to make a more accessible version. So, armed with a Lego robotics kit, the 13-year-old set to work creating one.

His printer, which costs around $350, took about a month to build and was completed in time for Shubham to showcase it at his school’s 2014 Science Fair, his father, Neil, told USA Today. But the teen didn’t stop there. Using components from a desktop printer and an Intel chip with WiFi and Bluetooth technolgogy, Shubham created a prototype for the printer, which he then took to Intel. A couple months later, the company agreed to back his project.

With help from his parents, Shubham created his own start-up company, Braigo Labs (a combination of the words “braille” and “lego”), which is currently working on a printer design to manufacture on a larger scale.

Shubham’s design weighs just a few pounds, compared with existing versions that can weigh more than 20 pounds, The Associated Press reported.

Shubham’s goal is to make the printer widely available so people who are blind can buy an assembled version in stores.

Watch Shubham demonstrate his incredible invention in the video below.

 

h/t Reddit Uplifting News

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.

 
126
126
TOPICS
JOIN THE CONVERSATION

Watch the Magical Moment this Legally Blind Mother Sees Her Newborn for the First Time

459
459

Kathy Beitz, 29, from Guelph, Canada, has a degenerative eye condition called Stargardt disease that’s left her with only a little bit of blurry peripheral vision, Guelph Mercury reported. She’s considered legally blind. Stargardt disease is a form of inherited juvenile macular degeneration that causes the loss of central vision and also affects the ability to see color, according to Fighting Blindness.

Beitz never expected to be given the opportunity to see her own child, but thanks to a special pair of glasses, she was able to look closely at her son, Askel, after his birth last December, according to Guelph Mercury.

A company called eSight developed the glasses, which work by combining camera display technology and advanced computing to deliver a real-time video, according to the eSight website. The user can change brightness or increase zoom until they can see, according to eSight’s website. The product is designed for people with low to very slight vision, but doesn’t work for the completely blind.

I think he looks like us,” Beitz says in the video below. “For the first baby that I actually get to look at, it being my own is very overwhelming. Even to get to look at my husband look at him is such a good feeling.”

See the touching moment in the video below: 

h/t Reddit Uplifting News

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.

459
459
TOPICS
JOIN THE CONVERSATION

Why I’m Thankful We Didn’t Know About My Daughter’s Disabilities Before She Was Born

429
429

DSC_0254-3 If I knew then…

that Ashlea would need a kidney transplant…

that she would have multiple disabilities…

that our lives would never be the same…

would we have done things differently?

I’m sad to say that we may indeed have done things differently. If we’d been told before the girls were born that Ashlea was going to have cerebral palsy, a vision impairment, an intellectual delay and kidney failure, we would have assumed she would have no quality of life and we may have requested she not be resuscitated at birth. If we’d found out that same information in the first few days of her life, we may have decided to withdraw care (I know this is a contentious issue, but when our baby required full life support and was in complete renal failure, it was presented to us as an option.).

But we didn’t know.  

Thank God we didn’t know.

What we didn’t know is how wrong we were to assume that someone with a disability would have no quality of life.

What we didn’t know was that having a child with serious disabilities would be a blessing.

That we would love Ashlea just as she is

that she would help us see what is really important in life…

that we would be OK with not getting the fairytale ending.

What an eye opener it’s been to live with Ashlea and her disabilities. If we’d known, we possibly would have made different choices. But we would have robbed ourselves of the joy and the delight that is Ashlea. We would have robbed ourselves of the chance to have our eyes opened, to see what is really important in life.

Even if someone had told me back then that I would have a child with severe disabilities and that I would be OK with it, it wouldn’t have helped. Because I wouldn’t have believed them.

Some things you have to learn by experience.

Thank God we didn’t know.

This post originally appeared on Thinking of Starting a Blog.

For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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.

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.

429
429
TOPICS
JOIN THE CONVERSATION

A Sign in Target Changed the Way I View My Son’s Autism

798
798

2014 brought so much change into my little world. It’s amazing how life can knock you off your feet and place you in a whole new galaxy when you least expect it. I should be accustomed to these life-altering events by now.

Almost 11 years ago, I held my 9-month-old daughter in my arms and watched her heartbeat stop on a hospital monitor. It still gets me… remembering that moment. If I allow myself to dwell on the memory more than a few seconds, my eyes will quickly fill with tears and my heart clenches. It was so long ago, yet it feels like wasn’t.

Losing Lexi changed me… for the better. I felt closer to God, closer to my husband, closer to friends and family and very much aware of every blessing and beautiful moment in life. Don’t get me wrong, I hurt badly for a long time and I still have flashbacks that cripple me. It’s true. Nothing is worse than losing a child, but that doesn’t mean there aren’t a lot of tough things in life. I’ve never been one to think that my bad is worse than your bad.

When Drake was born, in 2011, I couldn’t properly express the joy I felt knowing that I was finally going to be a mother again. Every ultrasound and echocardiogram told us we were having a healthy baby boy. But I knew Drake was autistic a year before he was diagnosed. I’m the classic Google maniac and knew everything about autism before I expressed my fears to anyone else. I had to reassure myself before I could even utter the words. I was scared — so very scared.

When Lexi was with us, I knew what needed to be done to fix her heart. It was never promised that she would survive, but we knew the steps needed to keep her alive. There were specialists who knew what was wrong and what to do about it. Six to nine medications a day kept her heart functioning. Autism is different. There is no magic pill. Drake can’t have brain surgery to get rid of it. For this I am thankful. I don’t want to lay another child down on an operating table for a major operation ever again.

I’m not yet one of those autism parents who thinks autism is a wonderful part of who my child is or will become. I’ve read so much on this disability, and I’m often in awe when someone says they wouldn’t change their child if given the chance. I wouldn’t change Drake’s sweet spirit or his love for simple things, but I would change him socially. Why? Because people are mean. I don’t want anyone to ever hurt my baby. If Drake continues to be as happy as he is right now and he learns to live independently, I can honestly say I’m OK with him having autism. Yet, here I sit, without my crystal ball.

I don’t know what the future holds, and this is the only part of autism that I abhor.

In the first few months after Drake’s autism diagnosis, I went from a state of constant worry to “mama on a mission” mode. I’ve put my teaching career on hold and made many other sacrifices to ensure Drake receives the therapy he needs. My husband and I have worked as a team every step of the way, and I’m so thankful. Every decision I make is based on what works best for Drake. He has intense ABA therapy four days a week and weekly occupational and speech therapy, which seem to be working. I cannot express how thankful I am for these people who work hard to help my child succeed. They love him and that makes me love them.

Please understand, Drake is not a difficult child. Yes, he’s currently nonverbal, and he has a few things that drive me up the wall (teeth grinding). Otherwise he’s so sweet and accepting of most situations. He isn’t rigid about routine, and although he’s awkward socially, he loves being around people. He does get uncomfortable in certain situations, but he tries so hard to cope most of the time. He’s happiest at home or in predictable environments… but aren’t we all? I’m so in love with Drake’s emerging personality, and I cannot wait to see how much progress he is going to make this year.

Recently I had an epiphany while in Target. I saw this amazing wooden wall hanging that read, “You are my greatest adventure.” I stood there, awestruck.

Drake is my greatest adventure. Autism is an adventure. Life is an adventure. I bought this piece to hang in my home. While this adventure may not be the one I thought I wanted… I’m ready for it.

This year I hope I can embrace this new adventure I believe God has set before me. Despite who I am and how often I fail, He always shows me such an exciting life. Some of these adventures are scary; yet He always shows me the color, beauty and wonder. I believe God opened so many doors for my family this past year. I can only smile when I think of all the things He will do as we continue this adventure with Drake.

I’m ready for the thrilling, exciting, daring, knock-you-off-your-socks moments. I cannot wait to look back on this adventure, sigh and say, “Wow, what a ride.” I’m ready for that moment. No, I do not want time to fly by, but I’m ready to know that everything was worth it.

This post originally appeared on “Walking With Drake.”

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.

798
798
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

6,300
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.