I Used to Feel Negative About Autism Awareness Month. Not Anymore.

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Forty years ago, I never saw people with autism in the community. Autism was a taboo topic, and people with it were often institutionalized. Today, people with autism are living in our communities — which are also their communities — and teaching us exactly what they have to share with the world. That’s progress.

I’m a believer in awareness that leads to education and acceptance. When my son, who has autism, was younger, I harbored some negativity about the public jumping on board for one day/month every year and then disappearing the rest of the year. I thought acknowledging Autism Awareness Month was a way of making themselves feel good. Now I see there’s nothing wrong with that. If acceptance starts with one day of them feeling better about themselves so they want to continue to raise awareness, then so be it. That’s progress.

My son is now 20 and still non-verbal. If the world can look at him when he’s jumping and flapping in a grocery store line and realize he has autism and that through his flapping he may be expressing he’s happy or overstimulated, then he may be able to navigate his community and forge relationships more easily. That’s progress.

It’s not a perfect world. People with autism and other disabilities continue to be excluded, bullied and sidelined. Wearing blue and displaying blue lights won’t solve everything, but it’s the beginning of our world moving toward acceptance. My wish for my son and for those who are on this journey with us all over the world, is that we continue along this path. In the past half-century, we’ve gone from hiding people with disabilities because we believed they had nothing to offer, to celebrating their existence. That’s progress, my friends. Progress.

This post originally appeared on Mother Autism.

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Entire Community Came Together to Give Boy With Brain Cancer His Dream Bedroom

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Five-year-old John Marandola’s dream of becoming a firefighter just came true.

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Photo credit Josh Street Design

“John John” loves everything to do with firefighters and wants to be one when he grows up. He also has Stage IV anaplastic ganglioglioma, a rare and aggressive form of brain cancer. Last year, doctors said he had just three to nine months to live. So, an organization called The Corner Kingdom Project stepped in to help make his dream a reality.

The Corner Kingdom Project is a New Hampshire-based nonprofit that redecorates bedrooms for children who are living with a disability or terminal disease. The program receives nominations for “kings” or “queens” in the northeastern U.S. Once they’ve selected a room recipient, they begin fundraising and connecting with sponsors. The organization then completes the room redesign with help from volunteers within one weekend.

For its first project, Corner Kingdom teamed up with Evesham Fire Rescue and BELFOR Restoration to turn John’s family’s living room in Willingboro, New Jersey, into his Dream Firefighter bedroom.

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Photo of John and his family via The Corner Kingdom Project, Inc. Facebook page

Now while John continues to fight cancer, he gets to be surrounded by what he loves most.

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Photo credit Catch the Action

John’s new bedroom includes a firetruck bed complete with lights, a siren, a hose and a bunk bed for his sister, Hope.

More than 200 fire departments donated patches for his quilt and the area surrounding his bed.

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Via The Corner Kingdom Project, Inc. Facebook page
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Via The Corner Kingdom Project, Inc. Facebook page

One of Corner Kingdom’s goals was to make any necessary medical equipment in the room feel less sterile and more a part of the room design. John’s bedroom requires a freezer, so the designers covered it with vinyl and created a fire station scene out of magnets.

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Via The Corner Kingdom Project, Inc. Facebook page

Corner Kingdom raised nearly $11,000 to make the project a reality. More than 50 volunteers showed up to help create the room, many of them local firefighters. “It was amazing to see how many people came together to make this project possible,” Tiffany Gagnon, Corner Kingdom’s president and founder, told The Mighty in an email. “It was humbling and wonderful to hear that other people felt that inner drive to do something good and make a difference. The people and stories intertwined throughout the project are truly amazing. ”

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Photo credit Catch the Action

Gagnon was inspired to start the nonprofit after reading stories online about children living with disease and disability. “I knew I wanted to give back somehow. I’m not a doctor, so I can’t treat these children. I’m not a therapist, so I can’t offer guidance to these families,” Gagnon told The Mighty. “I’m a designer, and I can provide nurturing and functional spaces.”

For Gagnon, the moment she realized she was truly helping John and his family was when the 5-year-old first walked in and saw his new room. “The mother cried. The little boy yelled with excitement and hopped right onto his fire truck bed and began playing with the lights and siren,” she told The Mighty.

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Via The Corner Kingdom Project, Inc. Facebook page
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John and his sister, Hope. Photo credit Josh Street Design
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Photo credit Josh Street Design
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John, Hope and the Evesham Fire Department. Photo credit Josh Street Design

For more information about The Corner Kingdoms Project or to learn more about the Marandolas’ story, visit the organization’s website and Facebook page.

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Food Allergies Made Me Live Alone as a Freshman. Thanks to Him, I Felt at Home.

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I am almost about done my freshman year at the University of Pittsburgh. I love Pitt; I have met so many amazing people over my first two semesters and I have made friends I know I will have for a lifetime. One of those friends is someone who I would have never expected; his name is Lenny and he is one of the facilities management staff in Ruskin Hall — the on campus apartment I live in.

He is one of the sweetest people I have ever met. As the end of the semester draws to an end and summer seems just around the corner, I wanted to take a moment to write this letter to him because he has truly gone out of the way to make my home away from home a REAL home.

Dear Lenny,

As I write this, I have 24 days of school left until the end of my freshman year here at the University of Pittsburgh. We first met 227 days ago when I moved into Ruskin Hall. I was terrified, to be honest. I was a freshman moving into an all upperclassman dorm.

You would soon come to learn that I have too many anaphylactic food allergies to eat in the dining hall, so the Disability Office at Pitt had given me a single apartment in Ruskin so I could cook all my own food. My access to a kitchen and safe food was an obvious plus, but I knew living in a single apartment with all upperclassmen meant I was not going to have an RA, other kids living on my floor with a similar experience, or a roommate to become best friends with.

But I soon found out that I had someone no other freshman at Pitt had — and that was you.

ruskin hall university of pittsburgh

I will forever remember you, Lenny. I will remember the smile you give me before I leave for class each day, I will remember the bear hugs you give, I will always remember to tell you what I am cooking and I will always remember how you go out of your way to make my feel at home.

I know that you said that you are not looking forward to the summer when we all leave and Ruskin is empty. I want you to know that I will be looking forward to the end of August when I get to return to apartment 211, I will look forward to your morning hugs and I will look forward to another year in my home.

When I come back, though, I will no longer be the same nervous freshman you met 227 days ago. I will not be worried about feeling alone or isolated because I know that, no mater what, you will be waiting at the bottom of the steps with open arms to give me a hug before I head to class.

Luckily, I will also have a lot of friends who will be joining me in Ruskin Hall next semester and I have already told them all about you.

Thanks for everything you do, Lenny!

Your friend,
Lily

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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The Mom’s Guide to Being a Frequent Visitor at a Children’s Hospital

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Disclaimer: During an emergency, the only thing you need is to remember to breathe. Going to the hospital will never become pleasant, but there are some things you can do before, during and after your stay to make things a little easier. 

BEFORE THE HOSPITAL VISIT:

Keep a hospital bag ready to go; don’t wait for an emergency to pack a bag. I have done that before and when I got to the hospital, I had a bunch of random stuff in the bag. I ended up having to use the strap for my heart rate monitor as a hair tie.

Here’s what’s in my bag:

  • List of my daughter’s medications and doctors
  • Set of clothes for my daughter and myself
  • The best hand cream money can buy because after using the hospital soap to wash your hands 100 times a day, your skin can fall off
  • Something comfortable to wear at night. Let’s discuss this nighttime clothing a little further: walking down the hall in a sexy silky nightgown is not acceptable in a children’s hospital. It is important for you to be comfortable, but keep in mind the people from the lab like to come in at 4 a.m. and turn on all the lights.
  • Socks
  • Toiletries
  • Underwear (this is where you can be as sexy as you want to be)
  • I keep a set of workout clothes in the bag and always grab my sneakers on the way out
  • Earplugs
  • Eye mask

Have a plan: Who is going to take care of your other kids? Are you going to stay at the hospital with your child every night or is there someone else who can give you a break?

Make a list of things you can grab before leaving the house, such as a phone charger, cash, and other things that you don’t store in the hospital bag.

DURING THE HOSPITAL VISIT:

Respect the nurses.

Sometimes parents get confused and think the nurses at the hospital are there to take care of the parents. No, they are supposed to be taking care of your child. Don’t complain to them about the wait time, the food, insurance company and anything else that has nothing to do with the direct care your child is getting at the present moment.

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I have a lot of bad memories of my daughter being in PICU, but I laugh when I think about some of the nurses. I will never forget the nurse who let me sneak out late one night just so I could buy a box of Peppermint Joe Joes.

Don’t make major decisions.

The following things are some of the things I have thought about doing or have done while my daughter was hospitalized:

  • Cutting my long hair super short
  • Converting to Judaism
  • Moving to another state
  • De-friending all of my in-laws
  • Picking out a name for my unborn daughter …

A lot of things can be undone, but just to be on the safe side, wait until you are out of the hospital.

Keep yourself busy during the day.

Welcome visitors, but set limits. Know when you are too tired and need down time. Try to get out of the hospital one hour a day. This is hard to do, but it’s important to step away and have an hour outside the jail… I mean, hospital.

Instead of sitting in a chair, watching TV and eating junk, try to go outside and get some fresh air. Yes, you are there for your child, but remember: you have to stay mentally and physically strong in order to be a good caregiver.

Have a routine.

The hospital has its own schedule: the lab people coming around to annoy you at the crack of dawn, the nurses changing shifts, the important specialist walking around asking if you want them to check your kid out (and then billing the insurance company $$$ just so you can hear them say, “Follow-up with her regular doctor when you leave”), the food trays being brought to the rooms… you get the picture.

Here is my routine:

  1. Open my eyes, make sure I am wearing pants and start searching for a cup of coffee
  2. Breakfast for my daughter (if she can eat)
  3. Eat my own breakfast, drink more coffee, call and check on my other daughter
  4. Call my husband and remind him of what a sacrifice it is to sleep on the bed/couch thing
  5. Figure out who is coming to stay for an hour so I can sneak out
  6. Read, visitors, lunch, workout, shower, more visitors, dinner, TV, read, get my daughter ready for night time, get myself ready for bed, read
  7. Call my husband and remind him what a sacrifice it is to be sleeping on the bed/sofa thing
  8. Ear plugs, melatonin, eye mask, sleep until the lab people come and wake us up

AFTER THE HOSPITAL VISIT:

It’s important to rest and get used to your new normal before getting back into a busy schedule. In the hospital, we are so worried about our child that we don’t have the time to properly process what is going on.

marjan holbrook the mighty

The way we handle extreme stress is different for every person. My husband loses his cool during an emergency, but once it’s over, he does not think about it anymore. I stay calm during the storm, and insist on staying in the trauma room when they are working on my daughter. When we get home, it’s a different story. Once I have the chance to process what we went through, the sadness and the anxiety takes over.

Several years ago, a doctor explained PTSS to me. I asked her if she was telling me all of this because she knew I grew up in a developing country during a revolution and a war. She said no, it’s because your daughter was close to dying last month. That put things into perspective for me. All the stress I had experienced previous to my daughter’s illness was nothing compared to the scared look in her eyes when she was hospitalized.

Depression, anxiety and PTSS are real, but it does not mean you have to live with it daily. You can learn to recognize when you need help and stop and ask for help. Make a list of things that help you heal and look at that list when you are getting close to your breaking point. My list: praying, Texting or talking to (insert name of a VIP). The comfort of my forehead resting on my yoga mat. The burst energy I feel when my hands are on the rough part of the barbell. Breathing after a long run.

When I get home, I get into a routine: rest, write thank you notes, write down the things I learned and what I can improve for next time, do something special with my other child, and remind my husband what a sacrifice it was to sleep on the bed/sofa thing.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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My Brother’s Diagnosis Made Me More Than Just His Sister

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I’ve known autism now for over 20 years, and saying it’s been an emotional rollercoaster does not do justice. You have to live through it to understand the ride.

My most vivid and earliest childhood memory was being in a doctor’s office (light blue walls, big brown desk, white coat), which I later realized was where my brother was diagnosed. Then I remember my mom holding my brother in his arms, and my dad holding my mom while walking down the black, metal staircase. I think I was walking alone on the steps, but not too far away.

And that’s how I’ve felt for so long — I always felt like I was trying to walking solo, on my own path, but not too far away from my family. I became a second mother, a third parent to my brother. Little did I know, there were many others on this similar path; it took me over 10 years to find my first “Sibs-friends.” And — I hope I am able to speak on their behalf — we all feel the same way: it’s tough, but we love our siblings just the way they are. We acknowledge that we wouldn’t be who we are today if it weren’t for autism.

brother with autism the mighty

So I will wrap this up with tears of mixed emotions and a letter that I wish my brother could understand, not today, but maybe in the future:

To my dear brother,

Your world of autism seems so simple. You live day by day to fulfill the little joys you need (expected favorite meals, favorite toys, scheduled events) and have so much love and care around you. Yet, you struggle with your lack of independence and the looming presence of seizures each day.

I’ve watched you grow, and it was not easy. From the days you would throw tantrums in our favorite arcade to when you first discovered puberty and seizures, to our first time alone for an extended period without parents… I’ve been there. I’ve been there to play with you, cook your meals and brush your teeth.

Because of your autism, I am a product of arrested development, discovered bits of parenting before I turned double-digits in age, and a constant worrier. It affects me in ways that I have yet been able to describe completely.

Yet, thanks to your autism, I am who I am today. I discovered a career that I am passionate about, and have met wonderful people who are just as understanding as I am about the importance of communication. Because of your struggles to tell our family about your interests, your daily memories and your immediate needs, I wanted to help ease that pain for other families.

I am a person who will give a piece of her heart to everyone who needs it, and let my love and care bleed out until I have nothing left for me. For better or for worse.

And for that, I am forever grateful. I believe in things happening for a reason,  mainly because of you, my sweet brother. Thank you, “Brat,” from the bottom of my heart. Thank you, autism, for the tough moments and the blessings.

The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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This Dad Knows What It Means To Be a Modern-Day Autism Advocate

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Billy Mann is the music producer behind your favorite songs. (Really.) But we’re not talking about what he’s doing for the face of music right now.

For Mann, the richness of life comes from so many things that aren’t about a hit song. As a father of four, Mann and his wife Gena have been actively involved in the autism community and raising awareness for the ABLE Act. Mann is a modern-day advocate in every sense of the word. Aside from taking part in big, important meetings on the Hill, he takes to Twitter to throw gems out into the Twitterverse and start important conversations.

Amid a busy start to Autism Awareness month, Mann recently answered three questions for The Mighty.

1. How has being a husband/father/artist/executive made you the advocate for autism awareness you are today? 

Having a child with special needs has made me a dad with special skills, and one is being inspired by my son to take action. He’s so brave and noble in his silence. Most people with typical kids don’t realize that it can take some children with autism years to learn to go to the bathroom by themselves, to use a fork, to hold a pencil. Most people don’t realize that when they see my son and they ask him how he’s doing, after 10 years of not responding, teaching, nurturing and therapy, now he says, “good” back to them. And being a coast-based creative executive out of New York where everyone is so important, in a rush, so special and almost-famous, I’ve learned to remember that everyone I meet has a story I don’t know about. The taxi driver. The doorman. The guy folding a straw over and over again while waiting in line at Starbucks… My son has made my listening and perception skills stronger and grown my compassion and sensitivity. But when I look at the fast increase in diagnosis, the NIH and CDC government numbers and studies and the impact autism can have on families and school districts, I cannot not act.  

2. How do you see media raising awareness for autism? 

In reality, the increase in media coverage of autism is a reflection of society, as it should be. Autism spectrum disorders have increased in the U.S. While the autism community is a diverse spectrum, the need for awareness, services, advocacy, resources to soften the harsh economic impact on school districts, local, state and federal governments, applies to everyone equally. Raising awareness is the first step towards right-sizing resources and inspiring understanding and acceptance.   

3. What are some defining characteristics of a modern day advocate? Have you seen social media make a difference?

I think that advocating in the social media world means seeing cyberspace as a kind of “Hyde Park” moment at all times. There are so many critical causes and needs and missions out there, and even while I’m focused on autism, I know in Hyde Park there are a lot of us at once. I’ve learned over the years to not just tweet my thoughts but also retweet and favorite and encourage others whose feelings and thoughts align with mine. Sort of like when James Brown screamed, “Yeah!” and then his whole band and the audience echoed back, “YEAH!” I think people who share causes are best when we grow the community through reaffirmation and positivity. 

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