Featured - Part 14

Gatwick Becomes First ‘Autism-Friendly’ Airport

November 9, 2016/by Rachel L. MacAulay

Last week, without too much fanfare, Gatwick Airport became the U.K.’s first designated “Autism Friendly” airport. The National Autistic Society is responsible for the presentation of the “Autism Friendly” award to restaurants, businesses, shopping centers, and more. Gatwick received the designation from the NAS, “in recognition of the airport’s commitment to becoming an accessible and friendly environment for autistic passengers.”

Last week, Gatwick Airport became the U.K.’s first designated ‘Autism Friendly’ airport.

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In order to earn the label, “Autism Friendly,” Gatwick had to meet a range of criteria that would benefit passengers with autism, along with their families and caregivers. This includes:

Providing clear and accessible information about the airport to autistic passengers;
Ensuring assistance is available for journey planning and preparation;
Training staff so that they’re better equipped to properly assist autistic passengers;
Introducing “Autism Champions,” who are trained to further educate and train airport employees, and to provide “enhanced assistance” to passengers who need it;
Rolling out initiatives such as the hidden disability lanyard program.

The hidden disability lanyard was introduced this past May, and is an option available for any passenger with hidden challenges, including autism, Alzheimer’s, hearing impairment, and more. While wearing the lanyard is voluntary, those who do discreetly alert airport staff that they may (quoting from Gatwick’s press release):

Need more time to process information or more time to prepare themselves at security;
Need to remain with family at all times;
May react to sensory overload (i.e., be surrounded by too much information);
Need staff to use clear verbal language as it may be difficult to understand facial expressions and/or body language;
Need staff to be visual with instructions and use closed questions to assist passengers effectively through the airport;
Benefit from a more comprehensive briefing on what to expect as they travel through the airport.

As anybody who has travelled with a child with autism likely knows, it’s especially hard when you take a child out of their recognized routine and familiar environment and expose them to the chaos and unpredictability of an airport. Initiatives like this one and Myrtle Beach’s “sensory-friendly quiet room,” go a long way in making it easier for passengers and their families to travel. We look forward to hearing about more airports earning the “Autism Friendly” designation.

Teenage Chef Cooks Up Plan to Help Others With Autism

November 9, 2016/by Rachel L. MacAulay

Like other children with autism, 15-year-old Chase Bailey had some major food aversions when he was younger. According to his mom, he would only “eat five different foods.” On top of that, he had severe speech delays and developmental and physical issues that led doctors to tell his mother that he would likely never speak or be able to take care of himself.

However, that’s not what happened. To quote from Chase’s “Chase ‘N Yur Face” website, “With the help of family, friends, and some other amazing people, I have been able to beat the odds, overcome many of the challenges, and do the things that I dream about.”

When Chase was about eight years old, he discovered the Cooking Channel, and became fascinated by the chefs and the foods that they prepared. The television shows introduced him to foods without forcing him to have to taste, smell, or touch them. Soon, he began figuring out for himself how he would change a recipe, and then he began creating his own. His mother explained, “food became his world—he started overcoming his aversions and even started trying exotic foods.”

The TV cooking shows introduced him to foods without forcing him to taste, smell, or touch them.

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Chase decided that he wanted to become a chef, with his own cooking show. His mother encouraged him not to wait until he was older, and helped him create the “Chase ‘N Yur Face” cooking show, which appears on YouTube. The program gained a wider audience as Chase invited chefs and foodies to share their recipes and teach him their cooking skills on the show. He also added his own sense of humor to the episodes.

In 2015, he was invited to speak (and cook) at the Autism Speaks Los Angeles Celebrity Chef Gala. He then appeared on The Chew with Mario Batali. That led to the chance to develop his own cookbook, which contains his recipes and jokes, and an endorsement by Batali.

Chase wanted to use his newfound fame to help other people like him achieve their dreams, so he started the Chase Yur Dreams Foundation. The purpose of the non-profit is to assist people with autism who are working toward their goal of living independently. It will be funded by sales of The Official Chase ‘N Yur Face Cookbook.

Chase is not even close to stopping there. He’s got big plans for the future, including owning his own restaurants and hosting “a comedy cooking show on television.” We have no doubt that he’ll make all of his dreams reality.

The Many Things I Love About My Child

November 8, 2016/by Jodie Eaton

There are so many things I love about my daughter; her autism doesn’t even come close to defining her:

I love the way she smiles. When she smiles, it’s like the sun shining so bright.

I love the way she concentrates when she’s lining up cards all over my floor. They follow no line, but to her, they’re perfectly straight.

I love the way she gets excited about shaving foam in the bath; the anticipation on her face when I squirt that tin into her little pudgy hand.

I love it when peek-a-boo causes her so much excitement that she squeals with delight.

I love it when my four year-old can make her laugh so hard that her whole body seems relaxed, caught up in that moment of abandonment.

I love it when she just wakes up in the morning and lies there, so still and so silent, wondering what the world will bring for her that day.

I love it when she tells me about the wonderful things she does at school; snippets of information that I have to interpret because she can’t, but just enough information to satisfy me for a week.

I love it when she asks me a question, knowing the answer but asking it anyway just to hear mine, as if to assure herself she’s correct.

I love the way she runs home from the bus, desperate to see her brother and sister.

I love it when she notices something that is so small to any of us, yet completely stands out to her.

I love seeing her engage with people she wouldn’t normally, initiating conversations that I never thought I’d hear.

I love it when she mixes her words and laughs at herself, then repeating the words all jumbled up again and again, laughing each time.

I love it when she enjoys her favorite songs, dancing along with no care in the world, no rhythm just movements, out of tune and no right lyrics, but completely immersed in the sound.

I love it when she shows me something that she’s just achieved, so completely proud of herself.

I love her commitment to life, to succeed; her determination to stay strong.

I love her innocence, the way she makes me promise to leave Santa a note, to explain she wants her stocking left downstairs and not in her room. When she puts her tooth under my pillow instead of hers, as she doesn’t want to be disturbed by the tooth fairy.

I love it when she’s anxiety-free, her mind allowing her that tiny bit of escape to wander free.

I love her hope, and her ability to never give up, her endless tries and her devotion to achieve things she wants to achieve.

I love the way she tried for months to click her fingers, and whistle, and the joy she shared when she achieved both things.

I love my child with Autism.

I love my child.

When Friendship Means So Much

November 3, 2016/by Rachel L. MacAulay

Our friends over at School of the Road may have finished their cycling journey across the U.S., but they’ve still got lots of great news to share. We couldn’t help but smile when dad extraordinaire, Travis Saunders, posted this on their Facebook page a few days back, and we’re sure you will too:

“My awesome seven year old son Patch (on the right in the photo) was diagnosed with autism at 21 months of age and is minimally verbal and has severe repetitive and restricted behavioural patterns and sensory needs. Making friends is really hard with limited language and even more difficult when others find it difficult to interpret your behaviour. And this is what makes this story so beautiful.

Everyone meet Nicholas; the 13 year old boy who lives around the corner. He is the boy on the left in the photos.

Tonight Nicholas came to visit Patch.

The boys kicked the soccer ball together. Nicholas then showed Patch his awesome uni-cycle skills and then the unbelievable happened. Nicholas sat down at the piano and started playing a song that Patch had heard before. Patch then sat down next to Nicholas at the piano for over two minutes. (Now, to understand the significance of this you need to know the back story. Patch generally runs away after a short time frame after hitting one of the keys and has high sensory needs)

But tonight was different. Nicholas had Patch’s attention. Nicholas made Patch feel calm and comfortable.

Patch then moved closer and closer and eventually placed his arm around Nicholas. Now most 13 year old boys would find this situation confronting. Not Nicholas. He realised the significance of the moment as he had known Patch for several years and so he placed his arm around him. Patch melted and then cuddled Nicholas. It was absolutely gorgeous.

Thank you Nicholas. This was such a significant moment in Patch’s life and I want the world to know just how brilliant you are.”

In Search of Joy (Because Autism Isn’t Always Awesome)

November 1, 2016/by K.M. Hodge

During the month of November, we are reminded about the importance of coming together and celebrating gratitude. In a few weeks, families and friends all over the U.S. will gather around tables full of food and take turns saying what they are thankful for. For families of children with special needs, it can sometimes be difficult to find anything to be grateful about. For me this is especially true. There have been times when I have scoffed (rolled my eyes) at the “Autism Is Awesome” memes on Facebook and grumbled in jealousy over my friends’ neurotypical kids’ achievements. For years I had no joy in my heart and was probably not a joy to be around.

A few years ago, I heard a story on the radio about a woman with cancer. Her doctor gave her the news that she needed to get her affairs in order. Instead of feeling sorry for herself and wallowing in the “why me” self-talk, she prayed that God would allow her to find and share joy with others during her last days on earth. At the time my own situation, while not life-threatening, had me asking quite frequently, “Why me?” This woman’s courage and joy-filled attitude inspired me.

I went out that day and bought flowers for the teachers, support staff, and administration at my child’s school. I brought in a bag of quarters and taped it to the teachers’ soda vending machine, with the request that they “pay it forward.” I participated in and started a few pay-it-forward lines at Starbucks. I thanked the people that were always there for me. It’s hard to be negative and wallow in misery when you are focusing on the good in the world and doing your part to add to the joy. This giving of gratitude and joy turned my life around.

Choosing joy in the face of adversity is never easy, and I am still learning to do it every day. When I first got the idea for this article, I had many reasons to be joyful. Then a setback happened and I found myself starting all over again, searching for small moments of joy. Of hope. You know the kind of days when everything turns upside down and all you want to do is give up? Today, choosing joy is hard, but I still try. So here is my list of joy. Maybe we have some similar ones or maybe it will help you to think of ones for yourself.

I am grateful for:

That first teacher who looked past the diagnosis and saw the sweet, loving boy I saw. You helped me fight for the services and care that we both knew he needed. I never stop being grateful for you and wishing you all the amazing blessings that life can offer you.
The friend who brought me flowers and chocolate and hugged me while I cried in my driveway.
The friend who always helps me put everything into perspective. The one I feel safe to tell everything to; who provides a judgement-free space, filled with love and acceptance.
The women in my life who close ranks around me when everything around me is falling apart. Your support means the world to me—the offers of help, the offers to take me out, and the offers to give me a break. Seriously, I love you all.
The perfectly timed sermon in church that helped me see things from a different perspective.
The acquaintance who pulled me aside and hugged me because she knew something was wrong.
The other mothers and fathers who get it, because they are going through the same stuff. Your words of understanding, and the stories and experiences you share with me, help me feel not so alone.
My readers who send me amazing emails about their experiences with raising special needs children or caretaking for special needs adults. I cherish each one of your emails.
The teacher with a special needs child who supported and loved on my child. You will always have a place in my heart. You were, and continue to be, such a blessing in our lives.
The children who took a chance and made friends with my sweet boy. Thank you for loving him for who he is.

Please share your gratitude below, but more importantly, tell the people around you. I challenge everyone who reads this to spread joy this season by doing acts of kindness for the important people in your life. I promise you: It will change your life.

A Bittersweet Victory: Autistic Tennis Player Wins Exclusive Necker Cup

October 27, 2016/by Rachel L. MacAulay

Becky Taylor, an autistic tennis player from the West Midlands, U.K., won the national Necker Cup tournament this past weekend. When you win a place at the Necker Cup, you automatically win a week-long trip to Richard Branson’s Necker Island, which is the site of the most exclusive Pro Am tournament in the world. What makes this so much more special is the fact that it was a mainstream tournament: The mental challenges that Becky faces every day made things 100 times harder as she battled for this well-deserved win.

Becky has been playing tennis for six years, and this was her third year trying for the Cup. She had just missed out on the Finals in the previous two years, but this year she won the regional tournament that took her to the next step in London. Becky got through the qualifying stage on Saturday and joined 11 other players in the Finals on Sunday. Becky then went on to win the Necker Cup for best female tennis player. She and the male winner would join Richard Branson for the Pro Am tournament on Necker Island.

It’s been a thrilling time for Becky, and she especially appreciates the support given to her by organizers Virgin Active UK and Gary Stewart. However, she’s had to turn down the opportunity to accompany Branson and other tennis pros and legends because of her autism.

“It’s sad because it was the chance of a lifetime, but just going to London to play in the Finals for two days was really hard for me. Staying somewhere different with new people…” Becky explained to AutismAwareness.com. “I have ADHD too, and I think I won’t be able to cope with all of the traveling. So, it’s a bittersweet victory, in a way. I won the prize of a lifetime, but because of my autism, it is not practical for me to go.”

As sad and frustrating as this might be, Becky should be—and is—still proud of her wonderful accomplishment.

“I still won and that can’t be taken away from me.”

(This post was co-written with Becky Taylor.)

How I Deal With Halloween

October 25, 2016/by Jodie Eaton

Let’s tackle Halloween in a fun way! I cannot even begin to count how many years Halloween has ended up like a real-life fright night in my house, as I try to get the kids ready for Halloween. I’d rather end up in a pumpkin smoothie than have to go through the rigamarole of taking my kids trick or treating. But it’s not as if we have a choice, is it? So get ready, we must!

First, I need to find THE perfect costumes! But, oh no, wait! It’s the 30th of October… I still have two children’s costumes left to buy and, unless Amazon have hired some extra speedy pigeons to deliver these costumes, it means a late-night trip to one of the local supermarkets. Did I say one? Sorry–I meant ALL FOUR OF THEM because each one only has bits and pieces and that means a mix-and-match costume! Why did I leave it so late?! I told myself every week in October that this was the year I would be organized for Halloween. I would do it: My children would look perfect and feel great, and I would make all of these tasty Halloween treats and be the perfect, cool, organized mummy of the year, with fancy decorations and perfectly carved out pumpkins.

One child is so sensitive to the outfits I buy her that she doesn’t wear them. They are discarded after the first 10 minutes because she absolutely insists that she put it on way before it’s time to go out! I know that once this costume is on, it isn’t going to last half an hour, so I try and plead with her not to put it on yet–at least wait until her makeup is done. But, noooooooo! How dare I suggest something so logical; something that wasn’t her idea. How dare I make her wait before she puts on the outfit that will be discarded by the door on the way out because “It’s too scratchy, mummy” and “It’s making me uncomfortable.” Arghh!

The other child gets so overwhelmed by special occasions that nothing seems to be good enough. His costume isn’t right and he didn’t want THAT one. He wanted one practically identical to it, which was black and not brown! I really can’t win.

We have face masks, but she wants paint too. We have wigs, but he wants his hair sprayed a different color. We do it all. We do it to keep the children happy and to make sure that they experience all that they can from one day of complete and utter madness. Of course, I just want to stay home and answer the door to all the happy children and give them sweets,

It’s time to go out now and start knocking on doors, but the child who is overwhelmed and seemingly ungrateful for everything seems intent on ruining it for everyone. Running off like he just sat on an exploding rocket; knocking on doors before all of the children have reached the same destination. I’m sure he thinks that the first one to knock is going to get all of the sweets. Walking with my family on Halloween night is like experiencing an evening at a Halloween special night designed to frighten the bejesus out of you.

It’s very difficult for my girl, in particular, because she’s dairy-free and it’s very sad to have to take away her chocolates (mwahahaha). But I do replace them with tasty apples, which she loves anyway.

We do Halloween slightly differently in England than in the States: We wait until it’s dark out and go then. I think this is mainly because people are at work; therefore, we leave as late as possible so that people have time to get home. It’s quite unnerving because my children have no sense of danger, and are very, very impulsive. I am on high alert from the moment we leave the house until we get home: running after them and shouting at them to wait, like I’m herding a load of scarily dressed, face-painted elephants hyper from the 500g of sugar they’ve just practically inhaled.

I love seeing my kids all dressed up. I can normally manage to get one picture of them all before they trash their outfits. And, even though it’s a misery trying to organize it all and keep them all as happy as they can be, they enjoy it too. At least I think so. Well, they enjoy the sweets and lovely treats they accumulate over the ten or so houses we visit. I can’t manage much more screaming over who wanted to be the first to knock on the door than that. So we trudge home, to view our goodies and argue over whose is whose and why they’ve ended up in each other’s bag, with cries of “Mummy, I don’t like these lollipops, I want his ones” and “ I only have 200 of these and he has 400. Why can’t I have some of his too?!”

They’re promptly whisked to the bath to wash off their face paint. Even though they didn’t want to sit still for it when we were putting it on, now they’re screaming blue murder as we try to take it off, because they don’t like the face cloth. While all of this is going on, I’m finding a decent enough hiding place for the sweetie overload in the hope that they forget all about them in the morning…

Happy Halloween!

Turning a Simple Shed Into a Sensory Sanctuary

October 17, 2016/by Miriam Gwynne

Most parents buy their children clothes, toys and other essential items, and use their garden space for barbecues, swings and kicking a ball about. However, I am an autism parent and that makes me think quite differently at times. Both of my children have significant sensory needs. My son has other complex medical needs and his twin sister has crippling anxiety. Helping them has become a matter of priority for me.

My non-verbal son really needed a safe place to go to help calm down from all the stress of trying to communicate and coping with his need to control his environment. His sister needed a personal space where she could escape from all of the social pressure she is under every day at school, and where her anxiety could diminish.

We had no spare rooms available in the house and, as the property is rented, building an extension was not a possibility.

So I looked to the garden.

I took the twins to some sensory rooms and watched to see what things they enjoyed best. I had our occupational therapist carry out a sensory assessment on them both and then suggest some equipment that might help them.

We then set about fundraising and contacting some charities to see if anyone could help us.

We asked a local shed-building company to give us a quote. They custom-built a shed to fit neatly behind our garage and erected it all for us. Then, we had a local flooring company come and floor it for us.

We bought a basic blackout blind locally, as well as some cushions and a blanket. The most expensive piece of specialist equipment we ordered was something called a sound wall. This is a wall with coloured handprints that respond to touch with eight programmable levels for different sound effects. My non-verbal son has vision impairment, so the bright colours and instant feedback of sound were perfect for him.

We also ordered a plinth and a bubble tube and colour-changing lights that have a remote control that the children can use. Finally, we added some beanbags, cushions and blankets.

So far we have kept it simple, and it is a magical place indeed.

One simple shed has become a sensory sanctuary for both children, giving them a safe space to be alone, in control and away from the demands placed upon them every day. It is their space and, although they are supervised, it is the one place where they can be who they want to be.

What I never, ever, expected to happen though, was that the shed would connect my children in a such a beautiful way. Away from peer pressure, my daughter has been unafraid to just enjoy her severely autistic brother in the way she should. As he presses hands on his wall, she has sung along with the wall to him, danced with him and found props to help him understand the songs. She tells him the colours he is pressing and changes the sounds for him too. It has been absolutely beautiful to watch.

With no television to distract them, no pressure from anyone and no limits, they have found their own wonderful way to connect. Like the simple beauty of seeing each other through the window!

From start to finish, the sensory room cost less than £3,000 to complete. While it’s a lot of money, the result for me has been truly priceless.

Meet Princess Jack: A Boy Who Connects to the World Through Fairy Tales

October 17, 2016/by Lesley Johnson

Jack is not your typical 11-year-old boy. His closet is jam-packed with dresses and tulle, his room is stacked with hats and wigs, and every surface is covered with makeup tins, face paint and books about goblins, witches, trolls and enchanted forests. Jack has high-functioning autism, and fairy tales and make-believe are a major part of the way he connects to the world. He is the subject of my short documentary, “Princess Jack,” exploring his special interest as he sews his first ballgown tailored for a debut at the royal ball.

Those familiar with autism will understand the concept of a “special interest” — a passionate and consuming fixation that garners a remarkable level of dedication, focus and energy. While many children with autism have difficulty with school, they often have a gifted knowledge and high degree of aptitude for their special interest. In Jack’s case, his detailed memory of stories and fairy tales is astounding, helping maintain his interest in learning despite struggles with reading and writing.

A friend introduced me to Jack just over a year ago, while I was looking for a documentary subject at her sewing studio. I was immediately captivated by Jack’s radiant enthusiasm and devotion to his sewing project. Over the course of a year, I filmed Jack finishing his ballgown, his life at home, and a dazzling fantasy sequence that allowed him to explore his interior fairy tale world. My intention was to tell Jack’s story by letting him introduce his particular tastes, inviting us to become immersed his world, surrounded by his loving family, dance instructors and sewing teacher.

From spending time with Jack’s family, I gained some insight into the journey of parents caring for, in his words, “a boy who sometimes likes girl things.” He is fortunate to have continual access to activities including sports, games and outdoor recreation, and is fully supported in his passion for dress up, drama and costume design. Princess Jack is the story of a unique and intelligent child telling us exactly who he is, and what makes him happiest.

Teen Demonstrates the True Meaning of Sportsmanship

October 14, 2016/by Rachel L. MacAulay

Although many people these days complain about the selfishness of our youth, we read stories every day about children and teens going out of their way to help others. Such is this story out of Cedar Rapids, Iowa, where a high school cross country runner helped a runner from the other team cross the finish line.

However, this isn’t one of those news pieces where the entire team conspires to “let” a child with Down syndrome make a touchdown in football or a winning two-pointer in basketball. Instead, sophomore Evan Hansen was competing in a cross country meet for City High when he noticed that Adam Todd, a runner from opponent Cedar Rapids Washington, had veered off the course. Adam, who has autism as well as epilepsy, had gotten distracted by an ambulance.

To keep Adam focused and on track, Evan held his hand for the remaining 1 1/2 miles of the race, making sure Adam finished first. “It was pretty amazing actually. I kind of pushed him in front of me when he finished,” explained Evan. “I wanted him to be in front of me because he finished it by himself.”

While the teenagers took it all in stride, their coaches were both choked up by the action. “I can’t tell you the immense pride that I felt,” said Jayme Skay, Evan’s coach. “Because you coach 20, 30 years, and it’s moments like that, that make it all worth it.”

Adam’s father told ABC News 7 that Adam was happy to finish the race, and to know he has a friend on the other team.