Melissa Cote

Freeing My Little Songbird

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bird-in-cageBright lights, loud tones or noises, sights that are too overwhelming to focus on. The room, and therefore the world, has erupted into frightening chaos. Your mind and your body react with fight or flight, and in most cases both. You want out, you need to get out, your body can’t handle this overstimulation at all.

And like a caged bird that just wants to be set free from the entrapment that you feel, you begin to thrash around in this cage. You fight so very hard to escape so that you can take flight and feel safe and at peace again. Sometimes during your thrashing and flailing around, you get hurt and destroy the inside of the cage. You don’t care—you just want to get out so that you can breathe…. You want to breathe and you want to stop feeling so suffocated and trapped.

How do I know this?

Because, my sweet little bird, I’ve watched you go through this so many times. And I’ve tried so hard to help you and free you from this torment and torture.

My little bird, my daughter Zoey. I watched you have such an experience just recently, and it wasn’t your first and I know it won’t be your last. We did our best to get through it, just like we always do and always will.

This time it was a new appointment and an evaluation with a new therapist. The door closed and the therapist locked the door and it was as if you were locked in a new unfamiliar cage, with new lights, sounds, smells and colors all around.

Fight and flight commenced immediately!

I watched as you thrashed and grabbed anything in your way and tore apart this tiny room. This little flightless bird was destroying this little cage and nothing was safe, and neither were you or anyone else who happened to be in the cage with you.

I needed to help you.

I grabbed you with my arms around yours and I began shouting, lovingly: “Zoey, you’re OK. You’re OK. It’s OK. You’re safe!”

As I held you in my arms, we fell back into two oversized “crash pads” and I could hear and feel both of our heartbeats so loudly. We got to our feet and before I could stop you, you picked up a chair and threw it at your captor.

I sprang into action once more as this bird raged on. This time you were flailing on your back on the floor, and I rushed and hovered over you. I hugged you tight as you were unable to focus and watched as you continued to scream, all while still trying to fly away.

I hugged you with my arms tightly wrapped around your body, and I began to sing.

“Wise men say, only fools rush in, but I can’t help…”

You focused and you made direct eye contact with me. You, my little songbird, looked up at me and sang right back at me, “…falling in love with you.”

And then, at that moment, my little bird was set free. You came back to me.

This is what my daughter’s autism is like.

 

Rachel L. MacAulay

Some U.S. Toys ‘R’ Us Stores to Offer ‘Quiet Hours’

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toysrus1A few weeks ago, we shared the news that Toys “R” Us stores in the U.K. would be offering quiet holiday shopping hours this past November 6th, so families of children (and adults) with autism could take them shopping in a sensory-friendly environment. Many of you asked if stores in the U.S. would be doing the same thing. The answer is yes, but not necessarily yours.

While Toys “R” Us corporate announced that, yes, stores in the U.S. would be offering “quiet hours,” they weren’t specific on which stores would actually be participating. That’s because they’re trying to do it on a local level.

As Meghan Sowa, a spokesperson for Toys “R” Us explained, “We’re working on a plan to test these types of opportunities on a local level – pairing our stores with local organizations to create an event for kids with special needs and their families.” While this is too much work to get much accomplished this holiday season, she also said that the toy store giant “will also assess opportunities to scale it nationally.”

The Toys “R” Us in Lafayette, Kentucky, was the first to offer the special event on the morning of Sunday, November 13, from 7-9 a.m. Lights were dimmed, music was low, and no announcements were made. Children could either accompany their parents to pick out toys or make wish lists, or stay in a designated “quiet zone,” where store employees entertained them and colored with them while their parents shopped. Refreshments were provided and store mascot, Geoffrey the Giraffe, was available for photo opportunities. The event was a partnership between the Lafayette Toys “R” Us store and local group, Autism Society of Acadiana.

“The pressure to be able to stay and withstand everything going on around us is always a hassle,” one mom explained, about her typical shopping trip. But at the special event, her child was able to run around the store and explore.

“For him to be able to be free and just run and pick what he likes…it was a better experience for me than it was for him,” said another shopping mother about her son. “I think that every [parent] of an autistic child should have this experience… I wish that every Toys “R” Us in the country could do this.”

The Lafayette store has said it hopes to repeat the shopping event in the future. As for other locations offering quiet shopping hours, we recommend that you check with your local store and/or autism organization.

 

Rachel L. MacAulay

A Job Fair Like No Other

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actors-for-autism1A first-of-its-kind job fair is set to take place today in Burbank, California.

The non-profit organization, Actors for Autism, is hosting the event, which is notable for two things. The first is that it’s a “reverse” job fair, meaning that individuals are the ones behind the tables, selling themselves and their skills, and companies are the attendees shopping for potential employees. The second, and more important, piece of information is that all of the individuals hoping to be hired are on the autism spectrum.

According to its website, Actors for Autism is “dedicated to the advancement, education, and training of people on the autistic spectrum. We fulfill this mission by providing new and innovative programs in the Arts, Film & Television, Animation, Visual Effects and Video Game Industries. We believe that people on the autistic spectrum should live as integrated members of society. Inclusion should be a reality, not a dream.”

While there’s been more news recently about companies implementing hiring programs for people with autism, most of them have been in the tech industry, including Microsoft and HP. However, while this addresses the skills, and dreams, of some individuals with autism, it still leaves out a large part of the population. Not everybody wants to develop software.

Actors for Autism offers programs in video, television and film production, animation, visual effects and video game design. It also has a MicroEnterprise Development course, where individuals learn to take a business idea from inception to development and deployment, including a business plan and marketing strategy. For people looking to develop their social skills, and not necessarily their job skills, the non-profit also has a Social Skills program that meets on Saturdays, where students are grouped according to their age and skill levels.

Los Angeles and the Burbank area is perhaps the best place to try to find a job in the entertainment industry. Anybody who has stayed to watch the credits roll in any Marvel or action movie lately knows just how many people are employed behind the scenes in a large-scale movie production. Actors for Autism is working hard to make sure that some of those names include skilled employees with autism, by giving people not just the tools and skills necessary, but also the opportunity to showcase those tools and skills to hiring personnel at the studios and recruiters in the entertainment industry. That’s a pretty big deal.

Miriam Gwynne

A Cry for Help

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cry-for-help1If you were walking home in the dark one night and heard a female screaming for help, would you view those screams as challenging behaviour? What if you were in a hospital and heard a child cry? Would you see that as challenging, or would you be more sympathetic?

We all understand that the lady screaming on a dark night is desperate for help. We all understand that the child crying in the hospital is scared and does not understand what is going on around him.

So why, when my child with learning difficulties and autism screams and cries, does everyone suddenly see it differently?

Professionals have labelled my child as having “challenging behaviour.” He kicks, pulls hair, scratches, bites, screams, cries, throws himself down stairs, throws objects in temper, headbutts the floor, and attacks people. He is now almost my height and a third of my weight. He is only eight!

He can also be loving, gently, funny, happy, warm, lovely and wonderful.

He has autism and a genetic condition.

Like the lady screaming in fright on a dark night, there are times he is scared. Right now he is terrified of open doors. His anxiety soars, causing adrenaline to pump through his little body to the point where he simply has to react. His challenging behaviour is his way of communicating fear and anxiety.

Professionals tell us to restrain him, speak to him calmly and discipline him. Would we do this to the lady screaming on a dark night? Most people would, in fact, rush to help her, yet people seem to rush to get away from my son when he has the same feeling of fear and life getting out of control. Both scream… both are full of fear… Yet, we call one “challenging behaviour” and the other simply a means of communicating for help in a desperate situation. Perhaps we need to realise that both are the same?

Like the little child we hear crying in the hospital ward who is worried, in pain, and not understanding what is going on around him, so too is my son at times when we take him places he isn’t familiar with or where he doesn’t want to be. Why do we have sympathy for a little child in a hospital ward yet look in distain at my son when he cries in the supermarket aisle?

My son has no speech. His behaviour is the only way he has of getting his message across. How can he communicate that he did not want chicken nuggets for his dinner? One way is to throw them at me. Instead of punishing that behaviour or seeing it as challenging, I prefer to see it as communication and frustration at not being able to say what he wanted.

I don’t want to encourage his behavior, but until I can teach him a better way of communicating, I have to understand his method of “speech.”

When he drags me out the door and onto the street, some professionals feel I should ignore him or restrain him. How then would he be able to show me the reason for his fear?

Yes, I would love him to be calmer, happier and less physical at times. I do discipline and teach him as his difficulties allow, but I want society to stop seeing my child as simply having “challenging behaviour” and see him as a child crying for help. Just like a woman on a dark night or a little boy in a hospital ward.

Perhaps the challenge in his behaviour is actually a challenge to society in a way we never thought about before.

Rachel L. MacAulay

Chuck E. Cheese Location Offers Sensory Sundays

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chuck-e-cheese1Those of you who have had your child go absolutely ballistic when the Chuck E. Cheese figure came close to the table (raises hand) or the animatronic band started to play up on the stage (yup, that too) will be thrilled to learn that at least one Chuck E. Cheese location is now featuring Sensory Sundays.

The Chuck E. Cheese in Attleboro, Massachusetts, is collaborating with the Center for Autism and Related Disorders (CARD) to enable children on the autism spectrum to experience the fun of Chuck E. Cheese without the sensory overload.

Sensory Sunday will take place on the first Sunday of each month, between the hours of 9:00 and 11:00 a.m. This is before the game and pizza venue opens to the general public.

Breanna Tanksley, manager of Chuck E. Cheese’s in Attleboro, said: “We are excited to provide a special opportunity every month for sensory sensitive families to enjoy their favorite pizza and games in a safe and friendly environment of tolerance and understanding.”

Other Chuck E. Cheese locations have offered sensory-friendly hours, including the Warwick, Rhode Island, location. We recommend that you check with your local Chuck E. Cheese to see whether they offer something similar, or to start one yourself.

Rachel L. MacAulay

A Toy Store for Children on the Autism Spectrum

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spectrum-toy-store1Illinois’ first toy store aimed at children with developmental challenges recently opened for business in Chicago. The store functions as part of the non-profit CARE Foundation and specializes in toys for children on the autism spectrum, marketing itself as a one-stop shop for parents and educators.

Spectrum Toy Store is owned by Jamilah Rahim, a home behavior therapist with a master’s degree in Special Education, who says she saw a need for this type of store. “I did in-home behavior therapy with families and I was able to see firsthand what kind of toys the kids played with, what they were into.”

She found out that most parents bought their toys online because there was nowhere local to shop for the specialized items they needed, and the idea for Spectrum Toy Store was born. The store helps take some of the guesswork out of buying the perfect toy because everything has the option to “try before you buy.” Jamilah explains, “They are able to come in here, play with the items, touch them, feel them see them and then determine what works for their child.”

In addition to selling sensory toys, specialty products and adaptive equipment, the store also offers therapeutic programming and hosts group activities. The focus is on children ages 3-13.

“We do different activity groups. We focus on different core areas, like communication skills, life skills, cognitive skills, gross fine-motor skills and sensory play. All of the classes are play-based since we are a toy store. We try to gear everything around play, so we do different activities with different toys to help support the skill deficit that children may have.”

To date, community feedback has been positive. Jamilah listens when parents tell her what works well for their children and strives to stock the items that fit the community. She also plans to launch a monthly toy subscription service this holiday season. Proceeds from the service will fund scholarships for local children to attend summer day programs planned for next year.

For more information or to make a purchase online, visit Spectrum Toy Store’s website.

Miriam Gwynne

The Hidden Epidemic Affecting Autism Parents

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autism-depressionI had a message from a fellow autism parent this week. Two words of that message have impacted me greatly. She wrote:

“I’m struggling.”

It is so common for me to hear this. It is the centre piece of every support group, the most common theme on online autism forums, the single most heard phrase when I meet up with people.

For some of those parents, it is so bad that I encourage them to see a doctor for support.

In my years as an autism parent, I have found there is a secret epidemic affecting so many autism parents and it needs to be talked about: We need to talk about depression.

Depression in the autism mum or dad is so understandable, but too often it goes unnoticed.

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People see a mum crying and think she is having a bad day. What they don’t know about are all the other nights she cried in private and nobody knew.

My eyes are more tuned to see people struggling since I have walked that path. I know what it is like to look at my child and worry for his future. I know what it is like to feel there is no hope. I recognise that feeling of failure when you realise your child is just not developing as they should. I know the pain of taking your child to hospital when they should be outside playing with friends.

It is isolating when your child has autism or special needs, and it is OK to admit that.

Sadly, society expects us to be positive, upbeat and encouraging, and I often see parents who are so emotionally overwhelmed, so sleep deprived, so beaten down by the system, that they have little hope.

When you have a child who struggles in school every day, a child who won’t eat or has no friends, a child who is being bullied for being different, or who cannot play in a park because the equipment is unsuitable for their needs, how would you feel? If your child was denied the support they need, or could not communicate, or was living in pain every day, would you not be heartbroken?

Is it any wonder there is an epidemic of depression among parents of children with autism?

While so many are on medication, and this can be vital, we as a society also need to recognise that autism parenting is exhausting and draining. What about better support and understanding for our children, better care for those in society who are full-time carers, and better training for staff so they can better meet the needs of the most vulnerable?

What about a society that is less prone to judge and quicker to encourage?

The current epidemic of depression among autism parents is very concerning. I am even more worried that continual budget cuts and ignorance in society are breeding not only depression among the parents, but sadly also among the siblings, and even the special needs children themselves. They all struggle with the same issues.

We need to recognise this epidemic and do something about it now.

Don’t ever be afraid to tell someone you are struggling. Don’t ever be afraid to ask for help. Together, we can support each other and help make a better future for the parents and our children.

A version of this first appeared on FireFly Friends.

Rachel L. MacAulay

Gatwick Becomes First ‘Autism-Friendly’ Airport

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gatwick2Last 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.

Rachel L. MacAulay

Teenage Chef Cooks Up Plan to Help Others With Autism

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chase-bailey2Like 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.

Jodie Eaton

The Many Things I Love About My Child

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jodie-love1

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.