A Bittersweet Victory: Autistic Tennis Player Wins Exclusive Necker Cup

becky-taylor1Becky 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

jodie-halloween-finalLet’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

sensoryshed2Most 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.

sensoryshed3I 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

jackandprincessesJack 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

teen-athlete2Although 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.

He Sees Things Differently, and Wants Us to Also

photography5Adam Wolfers believes that autism has an impact on his son’s hobby. But he means a positive impact—not a negative one. Because his son Morgan’s hobby is photography, and he’s got quite an eye for it. “He has always noticed stuff that other people didn’t notice,” explained Adam.

Morgan is 10 years old, and was first diagnosed with autism at age 3. Morgan has had a hard time interacting with other people and has had meltdowns through the years. He admits to sitting alone sometimes. But, while his teacher notes that he “operates a little bit differently” than the rest of the kids in his class, she also said that the only difference she sees between him and them is that he “needs that extra clarification of directions.”

He has found that clarity and focus in nature, where he is attracted to the juxtaposition of colors and shapes in the flowers and plants and more.

Morgan not only has an eye for nature photography, he’s also started his own business. At the moment, he pays a local shop owner for display space on her shop’s wall. “I thought it was amazing that somebody so young would even want to start something up,” she said. “He’s one of our top sellers.” Ten percent of his profits go to the Blue Ribbon Arts Initiative, which supports autistic artists.

But he’s not in it for the money, explaining, “I’ve seen a lot of things that amaze me and I just want to share those things with others.”

One of his photos was even picked by National Geographic for display in the home of Vice President Joe Biden. Morgan’s reaction? “I was like, oh my God, I can’t believe it!”

His parents teared up as they recounted what his photography means. “This photography is kind of his saving grace,” explained his father. “Because it gets people to look past [his issues].”

“He’s going to make his way,” his mother Heather said, fighting back tears.

Morgan’s advice to all of us? “Try new things and explore your limits and what you want to do.”

In other words, don’t be afraid to see things differently.

Looking Back: What I’ve Learned Along the Way

looking-back-angela-conrad1As I think back to the beginning of our life with autism, all I can say is that it has been one rollercoaster ride after another. I have fallen and gotten back up, time and time again. I’ve learned more than I ever thought would be possible from two little boys 30 years younger than me. It hasn’t been easy, but through strength and courage we continue to move on, each and every day. It’s really been what we have learned along the way that has gotten us to where we are today.

Hope is such a simple word, yet a huge part of our life. I’ve learned the real meaning of hope and how to cling to it every day.

I first realized that I had no other option than to turn to hope for a better tomorrow shortly after Andrew’s second birthday. Andrew was two and Trenton was three. I had been sleep-deprived for almost three years by then, and the life I knew before autism was no longer in the rearview mirror. It was gone forever. I knew in my heart on that particular day that Andrew had autism. My mom had sent me a picture of Andrew’s very long line of random items while she was watching him. He didn’t want to do anything else that day except line items up. In that particular moment, I stopped what I was doing and mourned for Andrew. Then, a few minutes later, I turned to hope.

I never know what each day will bring or what challenges we will face that day. Some days are harder than others and some challenges are way more exhausting than others. However, we continue to hope for the best. This was very hard to do after Trenton’s diagnosis, when I was trying to adjust to both the new diagnosis and our new life. But I learned that, if you can get past that point in your life and focus on hope, you will have a much brighter outlook on your new life despite the challenges.

While clinging to hope, I’ve learned that life is really all about the small things. They bring the biggest and brightest smile to not only my face, but to my sons’ faces as well. The first time I truly realized how amazing the small things were was the day Trenton wanted a pancake. He was three years old and I was trying hard to get him to use a picture exchange system. He was upset and I couldn’t figure out what he wanted. Then, he suddenly showed me the picture of a pancake. As you can guess, those pancakes were made immediately! He ate one and we all cheered! He had communicated what he wanted to eat to me for the first time.

That was the day that I realized my life would truly be all about the small things from then on. At one time in my life, I would have taken that for granted. But now, I don’t take anything for granted, not even the small things.

As our journey goes on, I keep learning. I’ve learned so much along the way. I look forward to each and every thing that the boys teach me. Even though we have tiresome challenges daily, every single moment is truly amazing and beautiful with them. Our hope for a brighter tomorrow is one of the keys to helping us see just how beautiful we can make our own unique and challenging life better.

When Your Special Needs Child Has a High Pain Threshold

brody1A high pain threshold can be common when your child has autism or, in fact, any special need. And it can be both a blessing and a curse.

Recently, when my son Brody had an accident at home, his high pain threshold was a real blessing. He was perched on the corner of our sofa (typically, one of his favourite places to sit when I’m not looking) and fell backwards, hitting his head on the corner of our solid oak table.

While we used to have those soft corner fittings for the table that you can buy to soften the blow from such incidents, we admittedly didn’t have them on the table because Broday just continually pulls them off (and chews on them). The mummy guilt from this was an added bonus to the whole episode.

We saw it happen in slow motion, like you always do with accidents. He lay there, wedged between the sofa and the wall. He raised his hand and held his head, but there were no tears. In fact, there was no big reaction at all. His Daddy scooped him up to assess the damage and then my heart crept into my mouth when I saw his head bleeding.

Enter panic and adrenaline. We rushed to the hospital and four impatient hours later—filled by crisps, biscuits and a temporary loss of sanity—we were home with a glued and bandaged-up head.

During the entire episode, Brody didn’t cry once. And it was a cut that would make your stomach churn. It was traumatic for us, but it was just inconvenient for him. His biggest frustrations were his dad holding a towel to his head until the First Response car arrived, and the boredom of waiting…waiting…waiting at A&E. In times like this, I am massively grateful that he has such a high pain threshold. Because to feel the pain from that cut would have been awful.

It also comes in handy because Brody has low muscle tone (hypotonia) and hypermobility. These two conditions, combined with a lack of spatial awareness, means he falls or bangs into things a lot. He is always covered in bruises, but he rarely complains when he falls. A lot of the time if he hurts himself when we’re not looking, we don’t even know about it until we see a mark appear or a bruise. I swear my child can injure himself in the blink of an eye. Sadly, he has no danger awareness whatsoever and because of that, I am your classic helicopter parent. Yet I still miss a lot, or don’t react quickly enough (there’s that mummy guilt again!).

While there are advantages to a high pain threshold, there are, of course, some downfalls.

A big worry for us is that our beautiful boy might really hurt himself and we would know nothing about it—especially as he is non-verbal and wouldn’t be able to tell us. I worry about how he might suffer in silence and it makes me feel awful, not to mention how bad it makes us look as parents. After all, who doesn’t know when their child is hurt?

Brody’s high pain threshold makes us panic if he ever cries. Because he rarely does, we figure if he’s upset he must have really hurt himself or be unwell. Of course, this isn’t always the case, but it’s a real worry for us.

A current problem is Brody has started stimming by crawling across the carpet with his forehead against it. He has “carpet burned” his head on numerous occasions and has remained completely unaware that he’s done so. The same goes for head banging, which he doesn’t do so much anymore, thankfully. He just doesn’t appear to feel it.

So, I have mixed feelings about that high pain threshold. It can scare the life out of me but, admittedly, it can really come in handy sometimes, too.

What Autism Has Taught Me About Friendship

jodie-friendship1I think I speak for most parents of autistic children or children with autism when I say the biggest lesson I have learned is one involving friendship. (I’m never really sure how to word because both ways can, and have, upset parents in the Autism/Autistic Community. So I will use both.)

And with that I mean that we don’t have, or can’t sustain, many! It isn’t because we don’t want them, or can’t make them, or aren’t friendly. It’s not because we aren’t likable, I hope. For me, in my situation, my circle of friends rapidly deteriorated after my children were diagnosed. People drifted away and stopped talking to us.

I have absolutely no idea why. I guess it could have been a number of things, really. To be honest, I don’t dwell on it because, after the people who weren’t really my friends in the first place stopped talking to me, it highlighted who my TRUE friends were. There may only be three, but they are so close that they are like my sisters. One of them actually is my sister.

Autism has taught me that only the strong and selfless people will stick around to support you.

When my husband, Kenny, and I started our family, lots of friends in our circle of people also were starting a family, and so naturally you lose some and gain more. It’s just the way the world turns—life goes on and friends rotate.

While other friends’ lives settled into routines, and their children hit expected milestones, my life was chaos. It was unstructured and messy. I was irritable and stuck in a life that I hadn’t ordered, with very few friends or people I could trust and talk to, or who understood my children and their quirky ways.

At that point in my life, I learned that autism doesn’t really let you have many friends. People didn’t understand my worries or fears for my child, or my ramblings and rants about people or services that had done us wrong.

Autism was lonely.

My circle of friends diminished into what can only be described as literally the best friends I could have ever asked for. I had never experienced such unconditional love from people that weren’t related by blood. It was overwhelming.

One of these friends is my sister, and the other two are my sister’s best friend Louise, who we “shared,” and her sister-in-law, Natalie. We formed a bond that was so strong not even our partners get a look in. Besides the usual conversations and friendship, we support each other and are always there for each other, in a flash if necessary. We have the best support network that I could ever ask for. It may just be mainly emotional support, but to me it’s the most important kind. My friends are selfless, kind, supportive, funny and accommodating.

Having a child with autism—or two, in my case—limits my social interaction to such an extent that I run the risk of neglecting my friendships and other aspects of my life. Similarly, having a child with autism has the ability to create friendship bonds so strong, you know you’ll never worry about having friends again. Because these friends are for life and, whether they like it or not, they are not going anywhere.

Autism has taught me that only the strong and selfless people will stick around to support you. When you find friends like these, you hold onto them for dear life, because they are so precious that they become an instant part of your family. Above all else, autism has taught me that not everyone wants to stick around for the ride, and that’s fine because after all of the energy has been sucked out of me, the last thing I want to do is fight for friendship!

All I want to do is open Messenger and find out what Beck has cooked for dinner that day, how Louise has styled her hair this week, and how many dresses Nat has bought this time. I want easy, comfortable friendships, and these girls are the most uncomplicated and supportive friends I’ve ever been privileged to know.

Thanks girls!


Food and Autism: My Child’s Three Favorite Foods

trenton-mcdonaldsFood can be a very challenging part of your child’s ASD diagnosis. It is for one of my sons. He has a very limited menu and it continues to stay that way.

He will often eat the same thing for three to four months and then move on to another item. Then he will eat that one over and over for the next three to four months, and so forth.  A few items stick around all the time and he will eat them continuously. These items become his snacks.

His snack foods often switch from chips to fruit roll-ups to fruit snacks. I have to be stocked up on these items at all times. I buy huge quantities of them weekly at the grocery store. I will never forget the day a young high school boy was checking me out and, after he scanned the 10th box of fruit roll-ups, he stopped and looked at me and said, “Is there a good deal on those or something?” It was hard not to laugh. I am sure that young high school boy could not even fathom if I tried to explain it all to him. I just simply smiled and said truthfully, “Oh my son just loves them.”

Besides snacks, there are three main food items that my son will eat for breakfast, lunch and dinner. I wouldn’t be surprised if it was the same three foods in your house.

  1. McDonald’s Chicken McNuggets

One food item that he is stuck on and won’t give up is McDonald’s chicken nuggets and they have to be fresh. I can always be found at the McDonald’s drive-thru at least twice a day, seven days a week. I have come to know each and every worker there. I’m not going to lie — in the beginning it was embarrassing. I’m sure they thought, “Wow. This woman loves her chicken nuggets.” I often wondered if they thought I was just lazy and never wanted to cook. Whatever they think, I will never know, and honestly, I don’t care. I am so tired and exhausted on most day that I just want the 10-piece chicken nuggets before the meltdown starts.

  1. Pizza

Another phase he goes through is pizza. His loves his pizza and he will generally eat pizza from almost any restaurant. However, do not give him a frozen pizza, as he will often turn his nose up at that. I can often be found walking into Papa John’s for a large cheese pizza. Once again, I am on great terms with the staff. One day, the manager said, “Boy, you are my biggest customer.” I tried to explain to him that it was the only thing my child with autism would eat. I could tell he had no understanding of why I had to buy pizza every two days, but in the end, I didn’t care. I just needed a pizza for my son.

  1. Spaghetti

The other big food item of choice is spaghetti. Thank goodness, I can make this for him! During these times, I think I keep the grocery store in business because I buy noodles and sauce in large quantities, weekly.

A lot of his rigid food habits are part of his autism struggles. All in all, his favorite foods are McDonald’s chicken nuggets, pizza, spaghetti, chips, fruit roll-ups, and fruit snacks. I have to be one prepared mother every single day to make sure I have all of these items on hand at all times. I have learned the hard way what happens if I don’t have his favorite item of food for the day — I would prefer to never find out again.