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

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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.”

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How an American Girl Doll Inspired This 11-Year-Old to Change the Way We View Disability

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Melissa Shang knows firsthand what it feels like to grow up without being able to relate to characters in the media. The 11-year-old has muscular dystrophy, a group of diseases associated with weakness and loss of muscle mass. Books, TV shows and movies geared toward kids rarely feature people with disabilities, and those that do tend to include them as sidekicks rather than main characters.

So Melissa, 11, is embarking on a project to raise awareness about what it’s like to live with a disabilityShe and her sister, Eva, are coauthoring a book whose protagonist is a young girl with muscular dystrophy, which they promote in their awesome TED Talk below.

Melissa and Eva’s project began with Melissa’s love for American Girl dolls. One morning, Melissa expressed to Eva that she wished the company would release a “Girl of the Year” doll with a disability so she could relate to the character’s story. The sisters saw this as an ideal opportunity and started a Change.org petition to convince the company to do just that. The petition garnered more than 140,000 signatures, but American Girl didn’t respond, according to Mic, and instead chose “Grace the baker” as their 2015 selection.

That’s when Melissa and Eva took matters into their own hands and decided to write the book themselves. They hope to raise enough money to self-publish through an updated Change.org petition and a Kickstarter campaign.

“As my sister proved, people with disabilities can be protagonists,” Eva says in the video below, “and can change the world just as much as anyone else can.”

Watch their inspiring TED Talk in the video below.

h/t Mic

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This Punk Band of Musicians With Intellectual Disabilities May Soon Perform In Front of Millions

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Pertti Kurikan Nimipäivät, better known as PKN, is a Finnish punk band whose members are all middle-aged men with intellectual disabilities.

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The band, formed in 2009, gained a lot of popularity after a documentary about them, called “The Punk Syndrome,” was released in Spring 2012.

The documentary followed band members Pertti Kurikka (guitar), Kari Aalto (vocals), Sami Helle (bass) and Toni Välitalo (drums) as they grappled with their newfound notoriety, as well as the challenges living with disability present.

We bring a different kind of perspective into punk music; it’s our perspective,” Helle, the band’s bassist, said in a press release. “We’re different, we’re four mentally handicapped guys so our perspective on the world of punk is a little different.”

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Recently, PKN has made it to the Finnish qualification round of the widely-popular singing show, Eurovision Song Contest, the band’s management told The Mighty. If they win the national competition in February, they get to represent Finland at the Eurovision finals in Vienna in May.

The Eurovision Song Contest has been ongoing in Europe since 1956. It boasts an estimated 180 million viewers every year, according to its website.

Stay tuned to see if PKN makes it to the big stage this May.

Check out the official trailer to The Punk Syndrome below:

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If Everything Happens for a Reason, Why Do I Have a Mental Illness?

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IMG_7284 (1) My whole life has been shadowed by my inner self reminding me that I was different.

The little voice inside my head telling me to fit in just never went away, even when I thought I’d shoved myself into a puzzle I didn’t belong in. It was like squeezing my foot into a shoe two sizes too small, but I had no other choice but to wear it. All of my energy was devoted to putting effort into fitting in with the world.

Until the day I got my diagnosis.

When I was told I had Generalized Anxiety Disorder (GAD), it confused me more than anything. I felt comforted by the fact that my feelings now had a title and I wasn’t an outcast, but I didn’t know what GAD was. I’d associated anxiety with a feeling — like when someone who hated to fly started getting anxious about getting on a plane. I had no idea anxiety could be a disorder. So when I was diagnosed with something I essentially had no background on, I took it with a grain of salt. I barely reacted to it. I never realized how much baggage would come along with having a mental disorder.

If I could go back to the day I was diagnosed with GAD, I would tell myself living with it won’t be easy, but everything will be OK. Within the year of my diagnosis, I experienced depressive episodes; I started learning about the stigma, realizing that some people were intimidated to have a relationship with me because they thought mental illness brought along too much work for them. I was always told everything happened for a reason, but back then, this reason I just couldn’t justify.

Now I believe everything really does happen for a reason, even if that reason emerges years down the line. I would have let myself know that having “disorder” seemingly written across my forehead was given to me for a reason. I found myself talking openly about my illness more and more, coming to the conclusion that I was a voice for those too scared to speak up. Knowing how many people may judge and back away because of my disorder is disheartening, but I’ve found the important people are the ones who stick by my side through anything.

I stumbled upon a quote the other day — a quote that accurately depicts the day I was told I have GAD.

“Can you remember who you were before the world told you who you should be?”

My answer to that? No. I cannot imagine my life without my diagnosis. But while I may have a mental disorder, I’m not my disorder.

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.

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10 Things I Wish I’d Known the Day My Daughter’s Wheelchair Was Delivered

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image (16) This is my modern mom’s guide to rolling with a kid in a wheelchair:

1. Accept the chair. There’s no denying it. It’s not a stroller; it’s a wheelchair. The day our first chair was delivered I didn’t even want my daughter to sit in it. “No, Chuck, there’s no need to have her actually sit in that. No, you don’t have to adjust it now. The monogram looks good.” My father-in-law asked, “What should we call it? A cart?” My mother-in-law asked, “You’re not giving up on her waking one day, are you?” I had many questions, a 2-year-old, a newborn, a dog and an optimist husband. Being an optimist is a good trait unless your wife is hormonal and mad at the world. Once I accepted that my daughter isn’t walking and that this chair is going to get her places, the chair became a part of our new normal.

2. Make the first outing short and easy. Only go to a place you know will be wheelchair accessible. What does that mean? If it was easy for you to navigate around that area when your baby was in a stroller, then it will most likely be OK for a wheelchair. As of now they don’t make wheelchairs with an attachment to carry the younger sibling. If you have another child under the age of 1, a good option is to wear a baby carrier.

3. Don’t make any major decision without considering the fact your child must use a wheelchair. We’d just moved to Georgia and were in the market to buy a house around the time Rebecca got her first chair. I desperately wanted to buy a one-level home. My husband wanted a newer low-maintenance house. So how did we end up in new three-story home? I said no, no, no until I walked in the master bedroom. Gorgeous. There was even a washer/dryer in the master closet. Our realtor said, “Your daughter is so little [she was only 2], and you should be more positive and think about her walking one day.” I should have said, “Dr. Realtor, walking and being able to use stairs are not the same thing.” But, I was fool in love and thought if I have a closet like this, surely I will not wear black yoga pants every single day. “Fantastic investment,” said the family member with three healthy girls. Did I mention I was hormonal and in denial? My crush on the closet cost us a lot of struggles, years of back problems and it led to my four-year affair with Nutella.

4. Get a handicapped parking tag. This is a necessity and it will make your life easier. Bonus: During the busy holiday season you will love your child even more than you do now because their parking tag will get you a parking spot by the entrance. Warning: using the tag when your child is not with you is rude, tacky, lazy and illegal.

5. People will stare. No, it’s not in your imagination. They really are looking at you, so pay attention to #7 and #8.

6. The most important advice I would give to a mom who’s getting their child’s first wheelchair delivered soon: Start building your team. Who are the major players on my team? Mothers who have raised children with special needs and those who help me take care of my daughters. When I need advice or support, the first people I reach out to are the women who have done this before. When I’m overwhelmed I call a person who I know will love to spend time with my kids.

7. Dress your child appropriately. This was easy for me until my daughter was in first grade. I looked at the other kids her age and realized I was dressing my first-grader like baby. I kept her hair short because we were tired of combing out the knots kids in wheelchairs get in the back of their heads. Even though she spent most of her time in a bright pink wheelchair, people often asked was my son. I hadn’t given much thought to the way she looked because I’d been in survival mode for years. My child has enough issues; the least I can do is to make sure she looks her best. No more “cutest baby in the world” bibs, and we grew her hair out. Yes, getting the knots out is a pain but well worth it when I hear another child tell my daughter, “I love your beautiful hair.”

8. Dress yourself appropriately. Ladies, unless you’re going out without your child please don’t wear a mini-skirt. Here’s why: Having a child in a wheelchair means you’ll be bending over. You get the picture. You don’t have to live in stretch pants, either. I buy longer dresses and short skorts (skooters) for outings with the kids. Recently my younger daughter asked me why everyone was staring at us at the mall. My heart broke, and I wanted to cry. So I put on my sunglasses and said “Honey, they must have us confused with the Kardashians and are wondering why we’re looking through the clearance section at J.C. Penney.”

9. I’m not going to lie; you’re going to experience some ugliness. At the same time, you’re going to see goodness like you’ve never seen before. Random strangers will come out to help you.

10. Your child is going to do amazing things rolling in that chair. He/she will do the things other kids do. My daughter who uses a wheelchair has played baseball, gone to dances, ran races and made friends.

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The Person Who Made Me Realize Those Outside the Autism Community Could ‘Get’ It, Too

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IMG_20140825_082322609 Since the day my son was diagnosed with Asperger syndrome, assuming the role of advocate has been nothing short of exhausting. While the professionals (most of them) “get it,” attempting to help others understand can be stressful and frustrating. Recently, after three years, I’ve found someone involved in my son’s life who not only understands but is willing to educate herself in unfamiliar areas of autism. A teacher. A fabulous, caring, compassionate, remarkable woman who’s my son’s first-grade teacher.

Too often people outside the world of autism struggle to understand what it’s like to live in our world. Living with a child on the spectrum is exactly that… a different world. Most of the time people really don’t “get it.”  So many people are quick to make assumptions and judge autism spectrum disorder (ASD) families — especially when they’re out in public. Without awareness about autism, it of course seems as though my child rolling on the floor through the aisles at the grocery store is just a bad kid. Others may not be aware of the painful stimuli (bright lights, noises, etc.) that have become too overwhelming for our child in that moment. As an ASD mom, I’ve learned to brush off this harsh reality and continue to raise awareness to those who are willing to listen.

Collaborating with professionals can be very tedious. Always trying to keep everyone on the same page (in a world that’s constantly changing) is draining. There are so many little things to make people aware of. I’ve found that a lot of my free time is spent making phone calls, sending emails, preparing documents, etc. It’s only natural to want this time to at least be somewhat enjoyable, right?

My son’s teacher has done just that. She’s made this “free” time enjoyable for me. You see, professionals are supposed to communicate and work with the parents to help the child. General education teachers, while professionals in their own field, are certainly not autism experts. They don’t have to look outside the realm of general education. There are plenty of teachers who are rigid and aren’t willing to think outside the box. So when a person goes that extra mile to understand my son, it makes my job as advocate that much easier. That in itself is enjoyable.

My son loves his teacher. When a child comes home from school and talks about his/her teacher nonstop, it’s safe to say the teacher is making a difference. To me, making a difference is what life is all about.

My son’s teacher has shown me that there are people in this world who are willing to listen. People outside the world of autism can take a step back and just simply watch. Judgment is not all there is to people who are uneducated about the outside world. For that I am forever grateful.

I’d like to publicly thank my son’s teacher. To let her know I appreciate her making my job as advocate effortless. For reaching out, for educating herself, for her willingness to listen and for going that extra mile. Most important, I want to thank her for touching my heart and the heart of my boy.

Thank you for “getting” it.

What a blessing this journey has been.

This post originally appeared on Open Your Box.

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