Rachel L. MacAulay

Her Daughter Was Fixated on This Shirt. When It Wore Out, She Took to the Internet for Help.

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CamiWhat happens when your child fixates on something and nothing else will do? If you’re smart, you post on social media and hope that—somehow, some way—your words are heard by a larger audience.

That’s exactly what happened to Deborah Skouson last week, when she begged her 500+ friends on Facebook for help in finding more “pink flower” shirts for her daughter, Cami. Cami has autism, and has been wearing that same shirt for nearly five years now. The shirt was sold at Target in 2011-2012 under its Circo label, and is no longer made. Deborah had bought a few of them on eBay, but was unable to find any more and the one Cami currently had was wearing out. Time was of the essence.

As Deborah later explained, “Cami adores this shirt, and it brings her a lot of comfort. She does not wear this shirt exclusively, but always puts it on after school, and wears it to bed.”

The story got picked up and shared six days later by Frank Somerville, a local news anchor with nearly 485,000 Facebook followers, and it’s then that Deborah’s plea found its wider audience. The outpouring was amazing, and nearly instantaneous. By Deborah’s last count, 73 shirts in assorted sizes are being mailed to her from as far away as Germany.

In addition, one woman contacted her and asked Deborah to send her any of the shirts that were outgrown or too small, so that she could make a teddy bear for Cami out of them. The bear will serve as a sensory comfort to her.

The power of the Internet. Sometimes it’s simply amazing.

Rachel L. MacAulay

Just in Time for Back to School: Check Out the Nesel Pack

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Nesel Pack1Back-to-school time often means new school gear, including a new backpack. Check out this Nesel (pronounced like “nestle”) Pack, designed by six college students at the University of Minnesota for children ages 6-12 with autism.

Last year, as part of their year-long “Entrepreneurship in Action” course, the students were required to come up with an idea for a start-up. The team thought about ways in which they could help kids with developmental disabilities and, according to the Kickstarter page, the team came up with the idea of the Nesel Pack.

To address sensitivities that many individuals with autism have, the Nesel Pack creators put widening straps on the pack that feel like a hug and give the same security as a compression vest. The straps are soft on the inside, so they won’t hurt the wearer’s skin, and they are also long enough for a caretaker to hold onto if necessary. Weights can be put in inside pockets, and the pack features several clips to hold things like toys, fidget tools, items to chew on, and more. There’s a name tag slot that can also hold a photo, and the bag has a reinforced bottom made from ballistic material for durability. With dimensions of 15” x 11″ x 5 ½”, the bag can fit both an iPad and a 14-inch laptop.

The student team initially featured their invention on Kickstarter and raised more than three times their initial financial goal of $10K in just the first week. That allowed them to start production on the backpack, which retails at $115. Because it’s built to last, as well as stand in for a weighted vest, the Nesel’s creators feel that it’s worth the price. However, the students recognize that the price tag for the bag puts it out of reach financially for many families that might benefit from it. They say that they’re actively looking both at ways to reduce the cost and ways to fundraise in order to help with donations of the bags in the future.

While no official studies have been done as to the scientific benefits of the backpacks, there has been great anecdotal feedback on the Nesel Pack from those that have tested and used it.

For more information, please check out the Nesel Pack Kickstarter page or website.

Rachel L. MacAulay

Michael Jordan Tells Fan to ‘Continue to Believe in Yourself’

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Jordan4Back in the beginning of July, a video of Jeffrey Harrison in Coeur D’Alene, Idaho, went viral. The video showed him playing a pickup game of basketball, dressed in Michael Jordan gear from head to toe—the jersey, the shorts, the sneakers, and even the sweatband on his left arm and compression sleeve on his left leg. Local news channel KREM (a CBS affiliate) picked up the story the next day, along with ESPN and other media outlets. Social media dubbed Jeffrey the “CDA MJ” (Coeur D’Alene Michael Jordan) and Twitter users posted various videos and photos of Jeffrey playing his favorite sport, dressed in one of his three complete Jordan outfits.

What people didn’t realize at the time was that Jeffrey has autism and basketball helps him cope with the world around him. Now 33, Jeffrey has been a basketball fan since the age of 4, and especially a Michael Jordan fan. He’s unable to work, and spends a lot of time playing basketball in pickup games around the area of Coeur D’Alene and Spokane, Washington, as well as watching old videos of Jordan to learn his moves.

Jeffrey told KREM that he always has fun playing basketball, and he takes it very seriously. He also mentioned that people aren’t always nice to him, but that he never lets it “defeat him.”

His close friend, Alfred Byrd, said that people laugh at Jeffrey, teasing him and calling him a Jordan “wannabe.” Alfred has seen his friend of 20 years struggle with his autism, but says that Jeffrey is “always striving to succeed on what he wants to be in life.”

After sharing the original story, KREM Sports Director Darnay Tripp contacted Jordan’s business manager to pass along Jeffrey’s information. Jordan’s response was to send two boxes full of Jordan gear to Jeffrey last week as a “thank you,” along with a personal note telling him to: “Continue to believe in yourself, play hard and always remember to enjoy the game.”

And that wasn’t the end—this past Friday, Jeffrey had a phone call with his lifelong idol. As Tripp tweeted, “Most amazing experience I’ve had on the job.” No doubt, it was also an amazing experience for Jeffrey and his family.

Rachel L. MacAulay

Inmates Train Service Dogs to Help Individuals With Autism

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Pooch2Anyone who has had a pet knows the therapeutic value they can have. Studies have shown that companion animals can help alleviate depression, help with physical tasks, and ease social pain. While there are many wonderful organizations throughout the world training animals to serve as companions for a variety of reasons, we especially liked this story, as the training benefits both prisoners and individuals with autism.

Tender Loving Canines Assistance Dogs (TLCAD) has been helping to train and place assistance dogs in San Diego County, California, since 1998. It focuses on two underserved communities—individuals with autism (through its Leash-on-Life program) and Wounded Warriors military veterans (though its At Ease program). TLCAD trains puppies from local breeders, as well as dogs rescued from euthanasia at local animal shelters. Facility service dogs have been placed with individuals, as well as schools, therapy centers, outpatient clinics and military hospitals.

TLCAD first launched its POOCH (Prisoners Overcoming Obstacles & Creating Hope) program in partnership with the Richard J. Donovan Correctional Facility, to help provide “an opportunity for education, rehabilitation and community improvement within the prison system.” POOCH also help the organization meet the increased demands for service dogs in the two communities it services. Because the inmates spend so much time with the dogs, the typical training period of two years (when starting with an eight-week-old puppy) to one-and-a-half years or even one year.

The POOCH program helps TLCAD train more puppies, but it also has extremely beneficial results for the prisoners who do the training. Because they’re learning how to use positive reinforcement to train the dogs, and the way that the dogs respond to that positive reinforcement, the inmates are also learning how to positively and effectively interact with their own environment. In a way, the dogs are serving as models of proper responsive behavior.

In July, the POOCH program expanded to a second correctional facility, Mule Creek State Prison in Ione, California. A group of inmates there are living with three puppies while training them. “You can tell that the mood on the yard instantly changes when the dogs are there,” Stephanie Santos, training director for TLCAD told ABC News. One man hadn’t pet a dog in more than 40 years.

“When I saw the dogs on the yard, it immediately brought a joy to me…it made me smile. In here, smiles are kind of few and far between; they’re hard to come by,” explained one inmate. Another one said, “I think I have a hardened soul. I’ve been doing criminal activity for so long… but he’s made me feel humble… and I feel appreciated.”

“These dogs are helping heal the inmates, and in turn, these inmates are helping train dogs who will then make a difference in the lives of the people who need them,” Santos explained.

To find out more about these wonderful organization, please visit the TLCAD website.

Rachel L. MacAulay

This Teen Runner Just Broke the 4-Minute Mile, Setting a Paralympic World Record

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Photo by Cheryl Trewory/Prettysporty.com

Photo by Cheryl Trewory/Prettysporty.com

UPDATE 9/14/16: Mikey has won the gold medal in the men’s T20 1,500-meter race at the Paralympic Games in Rio de Janiero. Yesterday morning, he crossed the finish line with a comfortable four-second lead ahead of the closest competitor. Once again, he came in under four minutes, with a time of 3:51.73–this is nearly six seconds faster than his earlier best time at the Sir Walter Miler in Raleigh. Each win, along with each faster time, brings him closer to a shot at the gold in the 2020 Olympics. We’re all rooting for him!

When Roger Bannister first broke the four-minute mile in 1954, it was like the shot heard ’round the world. Since then, the four-minute mile has become less of a big thing, and more the standard for male middle-distance runners. So when 19-year-old Mikey Brannigan came in seventh place with a time of 3:57.58 at the Sir Walter Miler in Raleigh, North Carolina, on August 5, it was really no big deal. Or was it?

It turns out that Mikey, who has autism, is the first athlete with a T20 Paralympic classification to break the four-minute mile barrier.

Many individuals with autism and their parents disapprove of the term “disability.” However, the Paralympics needs to classify its athletes for competition and uses the World Health Organization’s definition of intellectual disability: “A significantly reduced ability to understand new or complex information and to learn and apply new skills (impaired intelligence).” Athletes competing in the Paralympics intellectual impairment sport classes must have:

  • An IQ at or below 75;
  • Significant limitations in adaptive behavior; and
  • Disability onset before age 18.

This is the T20 Paralympic classification. It encompasses athletes with a range of conditions besides autism. Additionally, because autism is, as we know, a spectrum disorder, not all athletes with autism qualify for the T20 classification.

Mikey was diagnosed with autism when he was 18 months old, and didn’t speak until he was 5. He was in fourth grade when he first started running with the Rolling Thunder Special Needs Program in Long Island, and discovered he was both good at running, and had the discipline needed to excel at it.

After graduating from high school, Mikey was “highly sought after” by many collegiate running coaches. Unfortunately, he was unable to meet the NCAA’s academic requirements to run at the Division I level. He currently attends a community college and runs for the New York Athletic Club, with support from Team USA. According to his mom, they hope for him to complete in the 2020 or 2024 Olympic Games.

In the meantime, Mikey will be running the T20 1500-meter final at the Paralympic Games in Rio in September. Go Mikey!

Rachel L. MacAulay

Teen Starts Recycling Business; Hopes to Become Self-Sufficient

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James RecyclingIt’s no secret that not everyone has the skills that are traditionally necessary to land, and keep, a typical job. Increasingly, we’ve heard stories about parents helping their children start their own businesses, for a variety of reasons. This is one of those stories.

James Harris, an 18 year-old with autism living in the Bridlemile area of Portland, Oregon, has always been interested in recycling. Since he has limited verbal skills and found school very challenging, his mom Kathi came up with the idea of helping James make a career out of recycling. They started a local business called James’ Neighborhood Recycling Service, which recycles things that the township recycling program typically won’t accept.

Each client gets a tall bucket and can put in “anything from batteries to plastic bags and electronics—basically anything that you can’t normally recycle curbside.” With the service, James is helping his neighbors, the environment, and himself. “I wanted him to be self-sufficient [and] I really didn’t see an opportunity for him to do that with the work that’s out there,” said Kathi.

James goes out with his mom every Monday, Tuesday, and Thursday morning, and collects the contents of the buckets into big Rubbermaid bins in the back of his mom’s SUV. After collecting the bins, James brings them all into the garage, where he sorts through everything. “I wanted to help the Earth, and help save our planet,” explained James.

The service costs $12 per month and James’ customer base has grown to 50 households since he first started six months ago. That brings in $600/month. His goal is to eventually have 1,000 customers, bringing in enough income for him to become self-sufficient.

Kathi is thrilled: “I’m really proud of him. He’s so proud of himself and that’s the main thing that I see. His pride… his self-esteem—it’s amazing. And he works so hard on it.”

Angela Conrad

I’m Lost in the Chaos, but Still Me Inside

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Angela Chaos1I am a special needs mother, and single too. The single means I have no partner in my duties. I do it all with no breaks. I can’t step aside even if I want to. I can’t walk away and take a breather after a full hour of tantrums. It’s hard, but we are doing great because that is how I am choosing to look at life.

I would love to sit on my couch and sip my coffee and enjoy the quiet time when I get a chance, but it doesn’t work that way with special needs parenting, especially when you are doing it alone with two children with special needs. There are always hills to climb and holes to fill, and they must be done in order to make the next day’s challenges fewer.

Our days are made up of challenges. We never go through a day free of them, and it is very hard to deal with the trials each day. I can’t even put into words what it is like to live the same daily routine over and over. It’s hard, yet rewarding.

With that said, there are days where I have my moments. Don’t we all.

I might not always greet you with a flashy smile.

I may have a hundred other things going on in my head, thinking about how to handle a new situation that just arose in our life with autism. I may not have time to respond to your text, email, or phone call.

I may say something that might be a bit on the snappy side and it may not even come close to making sense to you. Most likely, it will leave you thinking, “What’s wrong with her today?” But please don’t ask that out loud, unless you want a detailed report of what is really wrong and then we can compare our days.

You might catch me getting antsy in the long line at the grocery store. My time is so valuable and, if I am at the store by myself, I want to get my items, get home, and breathe before the boys get home. That’s when the real hurricane starts and it’s all hailstorms from there.

I have to rearrange my days around my usual McDonald’s trips. One of my sons will only eat fresh chicken nuggets from McDonald’s daily, with lots of ketchup. When we don’t get lots of ketchup in our take-home bag, I will march right back and ask you for more. Most of the time I am not very polite because the tantrum has already started over the two ketchup packets for 20 chicken nuggets.

Sometimes you’ll see me in yoga pants every single day of the week, but it doesn’t mean I am doing yoga. I am lucky if we get out the door every morning with everything on. We have left the house numerous times without shoes, and even a time or two in our pajama tops. Yes, believe it or not, I have forgotten to put a bra on because I have been so busy with the morning autism chaos.

I sometimes go to sleep with 30 stuffed animals and 20 baby Einstein DVDs in my bed, but I know better than to move them. I’m sure you know what I mean.

I may get a haircut once a year, my nails and toenails always look ferocious, and I can barely keep track of so many other personal issues. Special needs children seriously changed my life.

My focus each day has gone to OT, ST, IEP, IDEA, and ABA. If you don’t talk to me in acronyms, I may not even understand you anymore.

So, I may not always come off as the friendliest person in the world, but I really am deep down. Somewhere in there, I am the same fun-loving person I was 10 years ago. Life just happens. Moments happen. But I am still me, with just a touch of autism in my life. It tends to take over daily.

Rachel L. MacAulay

A Normal Family: Writer/Comedian Presents Radio Tribute to Son with Autism

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Henry Normal PieceHenry Normal is known in the U.K. for writing and producing several comedy series for television, as well as publishing several poetry books over the years. He recently wrote a new book of poetry—his first in 20 years—and performed it live for BBC Radio 4. The show, “A Normal Family,” is an emotionally charged tribute to his teenage son, Johnny, who was diagnosed with autism before the age of 3. In it, Henry intersperses humor along with observations and poems about life with autism. The result is a deeply poignant, personal look at autism that every parent raising a child with autism cannot just relate to, but also laugh along with.

Henry reminisces about the day his son was born: “I remember saying to myself that he was going to have a better life than me. Things that held me back wouldn’t hold him back. I’d see to that.” He had no idea what was coming.

In an all-too-familiar story, Johnny did everything babies were supposed to do, until he didn’t. At first, Henry was in denial: “It felt somehow, betraying Johnny, to think there’s something wrong with him.” He and his wife Ann took Johnny for testing—an experience that Henry describes in the first poem he reads, about what the “mildly severe autism” label would come to mean for them.

The poems are symbolic, meaningful, and thought-provoking, but the show is full of humor. As Henry explains after the first poem: “Some of the poems are serious… and they can get emotional and a little difficult for some of you, so I’ve brought along a toilet roll.”

Henry goes on to point out: “Autism is a classification that doesn’t exist in nature. It’s a man-made distinction. And because people say that Johnny’s condition is mildly severe, that’s their observation. It doesn’t mean that’s how Johnny experiences it.”

He ticks off a list of the different recommended therapies and methods they tried with Johnny, from ABA therapy to “swimming with dolphins.” Then he sums up every parent’s feelings perfectly when he explains, “Let’s face it: Like any parents, we’d have skydived playing the ukulele if we thought it would help.”

Henry’s poetry is accessible, full of observations about the ways in which autism affects both the individual with it, and the people around them. He celebrates the casual lack of boundaries, and the little victories that add up, bit by bit. He finds the humor and allows us to not just laugh with him, but also at ourselves. Because things can be funny. But they’re also important.

Before he closes the show, Henry wants parents of newly diagnosed children to know something that he wishes had been said to him. “There will be change. It may be slow. It may never be exactly what you imagined. But I think it’s important to understand there will be change.”

Pour yourself a cuppa, or a shot of something stronger, and take the half hour to listen to this brilliant show here.

 

Rachel L. MacAulay

Purse Designed by Student With Autism Becomes International Sensation

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Dinosaur Purse1 copyEven if you don’t care about the world of fashion or keep a scorecard on the various diplomats who visit the White House, chances are you’ll still be interested in this story. This past week, when the Prime Minister of Singapore visited President Obama, his wife Lee Ho Ching was photographed carrying a simple and fun dinosaur clutch bag designed not by a famous designer, but by a 20-year-old man with autism.

It turns out that Mrs. Lee is an advisor to the Pathlight School, the first autism-focused school in Singapore. The school has an Artist Development Programme (ADP) and the items designed by ADP students are featured at its Art Faculty, to “promote the special talents of people with autism and related challenges.” Mrs. Lee brought three purses designed by ADP students to the U.S. for her visit, deciding at the last minute to use the blue dinosaur bag designed by Sheng Jie.

While Sheng Jie’s parents were amazed that their son’s design made it into the international spotlight, his father said that his son doesn’t realize the impact that his design made. He explained: “He is just happy when we tell him someone likes what he’s made.”

Sheng Jie makes dinosaur designs right from his head, without relying on any pictures or photos. His parents said he became obsessed with dinosaurs after watching the Disney movie “Dinosaur” when he was just 3 years old. It was the first movie he’d ever sat still for, and he was soon sculpting clay dinosaurs. He went on to create his own dinosaur encyclopedia, featuring his artwork as well as descriptions of each dinosaur. Although Sheng Jie doesn’t talk much, he loves to name all of the dinosaurs from A to Z.

Dinosaur Purse2 copy

In 2011, after teachers noticed his artistic abilities, Sheng Jie became one of the first students in Pathlight’s Artist Development Programme. Professional artists work with the ADP students to help them develop their talent. When possible, the work of the students is turned into merchandise to benefit both the program and the students, who earn royalties on every sale. Sheng Jie’s dinosaur drawings are featured on pouches such as the one that Mrs. Lee carried, as well as notebooks and notecards. The specific pouch showcased by Mrs. Lee sold out within 24 hours.

Linda Kho, Pathlight’s principal, told the BBC, “We were pleasantly surprised and honoured that she chose to bring this bag on her official visit. It gave such a great mileage for the artist on our Artist Development Programme (ADP).”

Mrs. Lee also gifted Mrs. Obama a set of mugs and cups featuring the artwork of another ADP student. We know it’s unlikely, but we think it would be great if they became a permanent White House installation!

Charlotte Llewellyn

His First Time at the Theatre

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Child Theatre1My son Ethan has fallen in love with the Gruffalo series. It is safe to say that, at times, our house has been taken over by the Gruffalo and the big bad mouse. From reading the books to watching the DVDs, making our very own Gruffalo teddy bear and pom-pom figures, and even taking a walk through a real-life Gruffalo trail. You name it, we have done it.

When I saw that The Gruffalo’s Child was being shown at our local theatre, I was quick off the mark to make sure we had tickets. If ever a new experience arises that Ethan has never done before, I try to make sure that we put our names down for it.

Activites such as going to the cinema or to the theatre can be a no-go for families who have children with autism or other special needs. There is such a huge level of planning ahead required: running through what will happen, how you’ll get there, etc. Then, by the time you get to the place, your child might be too overwhelmed by the environment to actually stay and enjoy the movie or play.

The day finally arrived for us to go and see Ethan’s first theatre show; it is always interesting to see what Ethan’s reaction will be. We prepared him for two days, telling him what we were going to see, where the show would be held, and who we would see once we were there. It helps Ethan cope a bit better when he knows what will be happening ahead of time.

We got to the theatre and there were a lot of excited children captivated by the thought of what they were about to see. There were also pictures of The Gruffalo Child on sticks; we got Ethan a stick that he immediately fell in love with and held proudly.

Stepping into the theatre, I looked around for our seats, and then realised that the tickets I had ordered were for seats located one row from the front. One part of me was really pleased with the fact that we were up-close and personal with the characters, while the other part of me thought, “How will Ethan deal with the proximity of our chairs to the stage?”

By this point, I had Ethan in my arms–he was unsure about the lighting in the room, the number of people, and the level of noise being given off. When we’re home, depending on where Ethan is in the house, he usually has to have every light on before he can walk around confidently. The sound of people chatting and laughing is something that I can filter out for the most part, but for Ethan it can be unbearable for him as he struggles to process sounds.

After finding our seats, we tried to put Ethan in the middle seat to stop him from wandering off mid-play. However, he refused to leave my lap, clinging onto me for dear life. With his hands over his ears, he sat on my lap, repeating the words, “don’t hurt me, don’t hurt me,” over and over again. He felt safe and comforted in this position.

Sure, other people saw Ethan, his body language, and his size  (he’s very tall for his age), and likely wondered why he was acting this way. I didn’t care–my main thought was whether Ethan would be able to enjoy the story that he had come to love, or whether he would have a complete meltdown before it even began. I hugged him tightly, rubbing his hand to calm him, and told him about the book to familiarise him with what he was about to see. The lights dimmed; everyone fell silent.

Ethan spent the first five minutes with his hands over his face, and no amount of coersion was able to get him to take his hands away. I was just happy that he was still sitting. If it meant he had to watch the whole play through his fingers, so be it.

As the play went on, he slowly but surely let his hands down. He became engrossed in the characters, the storytelling, and the singing and dancing. He wasn’t so keen for me or his daddy to sing along with the story or get him involved. It was very much on his own terms or not at all.

As his mum, I was so happy that he was enjoying this new experience. He adapted so well to the environment, going from being completely overwhelmed to clapping along, laughing his little socks off, and generally interacting with the characters. It was such a heartwarming thing to experience with him: I couldn’t help but smile proudly, with a little happy tear in my eye,  to see him so happy and enjoying something that he relates to in such a huge way.

Ethan seems to adjust really well to new situations, so that will continue to drive me to put him outside of his comfort zone. It will be small baby steps–nothing too extreme–but things that I know he will enjoy and love. I guess skydiving is a few years away yet!!

 

{The original version of this post appeared first on Mummy Logs.}