Kameron.

Deafness and Autism: My Son Is the Needle in the Haystack

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Many people in the autism community have heard of Dr. Stephen Shore’s quote, “If you’ve met one person with autism — you’ve met one person with autism.” Autism is a spectrum disorder that manifests itself differently across individuals. I am going one step beyond Dr. Shore’s declaration by distinguishing a small but increasing segment of the autism community.

“If you’ve met one person with autism—you haven’t met any with deaf autism.”

The most recent statistics determining the national average of children with autism in the United States is 1 in 68. Within that number, there is a growing number of deaf/hard of hearing children who find themselves caught between two worlds. My 6-year-old son is one of those children caught in limbo; a member of two communities, but belonging to neither.

For deaf autistic children, the ability to communicate is strongly affected by the combination of not being able to hear what is being said, accompanied by limited verbal skills, which is characteristic of many children with a single diagnosis of autism. I learned that my son Kameron is deaf when he was 9 months old. His audiologists educated my family about cochlear implants, so we opted to have his right ear implanted first. I also began a quest to learn sign language. Even after a couple years of early intervention, he did not make any progress. He experiences sensory issues that resulted in an inability to wear the external components of the cochlear device.

On his second birthday, I discovered that he is deaf and autistic. His language is currently very delayed. At 6 years old, most typical developing kids are speaking full sentences and reading simple words. Many non-verbal autistic children are experiencing success with communication devices and tablets. Similarly, many children who are only diagnosed as deaf are using sign language. I can’t say that my son fits into any of these categories.

Communication or Assistive Technology (AT) devices require the ability to point and manipulate buttons or navigate different screens. Kameron has difficulty with finger isolation, which makes using an AT device as a mode of communication ineffective. In order to build a strong sign language vocabulary, a child must have strong imitation skills. Currently, Kameron does not have the imitation skills necessary to use sign language as a primary mode of communication.

His limited communication skills tend to alienate him from other children. He doesn’t have playmates that are not relatives or close family friends. Even those relationships are a bit forced, as he cannot share in their conversation and interests. He can’t utter the words “play with me.” A game of catch is more of a therapy session in turn-taking and imitating, contrived by an adult. Almost every step he takes during the day is shadowed by an adult, who must stand within several feet to ensure his safety.

Modes of communication is a hot topic among speech language pathologists (SLPs), behavior analysts and special educators. For children who are deaf and autistic, choosing a primary mode of communication is doubly challenging. Education programs and school placements are built around modes of communication; however, when a child does not fit nicely into one of the modes, the result is an educational program that lacks the adequate resources and programming options.

When my son turned 3, the “team” (not me) made the choice that a half-day Deaf and Hard of Hearing (DHH) program was the best placement for him. After my request for a mediation hearing, we compromised on the DHH class in the morning and class for children with autism in the afternoon. There was no one like my son in either of the classes. In fact, there was no precedence for deaf autistic children. The research is limited. The resources and programming options for children like my son do not exist. He is the needle in the haystack.

So, how does my family manage in a world not designed for those who are deaf and autistic?

Day by day, just like everyone else. Our outings may require a bit more planning and thought. One person has to be the designated aide to follow my son throughout the day. Not every activity can be modified for my son’s enjoyment, but we try to make adjustments when we can.

After several years of him struggling to wear his cochlear device, he now wears it every day. Through determination and strong advocacy skills, I was able to find a suitable educational placement where he is beginning to make progress. He is still the needle in the haystack, but his team is very accommodating and progressive in their thinking and approach to education. In terms of receptive language, he understands some simple directions such as “clean up toys” or “go bathroom” that I usually pair with my voice and a sign/picture. He can consistently respond to his name being called. He can wave “hello/goodbye.”

I still long for him to speak so I can hear the words, “I love you mommy,” but he is a master of facial and body expressions. He is affectionate and absolutely loves hugs. His face lights up when he sees me. Sometimes I am all that matters to him. To many others these things may seem basic, but they mean all the world to me.

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Stimtastic Creates Jewelry for Adults and Teens With Autism Spectrum Disorder

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Most products for people on the autism spectrum are geared towards children or their parents, so Cynthia Kim created something adults on the spectrum could enjoy. Enter Stimtastic, a jewelry and toy company that promotes “stimming” or self-stimulatory behaviors like arm flapping, rocking, humming and other repetitive movements common among people on the spectrum.

“My goal for Stimtastic and for the products we sell is to help adults and teens who stim feel not just comfortable but celebrated,” Kim, who was diagnosed with autism when she was 42, told The Daily Dot. “For an adult who has spent years or decades having to suppress their stims in certain settings, knowing that they can now walk into a meeting or classroom wearing an item that will allow them to quietly stim can be empowering.”

All of the toys and jewelry sold on the site are made for and tested by people with autism. The jewelry is affordable, with many pieces costing under $10. All pieces are designed to allow either fidgeting or chewing, and are designed for any gender who wants to wear them.

Stimtastic’s line of toys includes crocheted stress balls, chewable pencil toppers, puzzles and an iPhone case that mimics bubble wrap. For those concerned about sensory sensitivities, all of Stimtastic’s chewy products are made from a food-grade silicone, which is tasteless and odorless.

Kim wants Stimtastic to become a community where people with autism can feel comfortable being themselves. On the Stimtastic website, Kim invites visitors to contribute to the blog, submit a stimming video, comment on the Stimtastic Facebook page, and share ideas about making Stimtastic better. In addition to fostering a community, Stimtastic donates 10 percent of all proceeds back to the greater autism community. Stimtastic’s largest donation has provided weighted blankets for those who cannot afford them.

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McDonald's Went 'Above and Beyond' After a Boy With Autism Lost His Happy Meal Toys

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One Irish mother is calling her nonverbal son with autism “the happiest boy in Ireland” after receiving a surprise shipment in the mail.

Nicole Duggan, 27, is mom to Riley, a 2-year-old who has a penchant for Angry Birds-themed Happy Meal toys from McDonald’s.

So when Riley misplaced several of his favorite toys — and an hour-long search for them turned up empty — mother and son were both devastated.

Duggan decided to email McDonald’s to ask if she could buy any extra of the toys for her son, but was pleasantly surprised by what happened next.

The next morning, she and Riley woke up to a package from McDonald’s containing the burger chain’s entire Angry Birds toy collection.

“He couldn’t believe his eyes when he saw them,” Duggan told The Mighty.

 

LOVELY GESTURE – We’re speaking to Cork mum Nicole who was overwhelmed by this lovely gesture from McDonald’s for her…

Posted by Corks RedFM 104-106 on Wednesday, July 20, 2016

 

Duggan was so touched by the gesture that she reached out to local Cork radio station RedFM to share Riley’s story:

Anyone who has a child with autism knows how hard it is for them to take to new toys and it is very rare for them to find something they love,” Duggan told the station. “To most people this would be a stupid delivery to get, for my little boy it was like Christmas morning!!! McDonald’s went above and beyond for my small man and I can’t thank them enough.

For Riley, the gesture was especially meaningful, Duggan said.

“Being nonverbal, he cannot get his feelings across, so he couldn’t tell me why he was upset and it just built up and he was so frustrated,” Duggan said of her son losing his toys. “It just shows how something so small can make such a difference to a child with autism.”

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woman's hands on the wheel of a car

Learning to Drive as Someone on the Autism Spectrum

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I was diagnosed as being on the autism spectrum when I was 15 years old. Back then, I really didn’t know what that meant. So I focused on other (seemingly more important) things. My biggest focus was getting ready to learn how to drive!

Like most people who want to get their driver’s license, I was so excited when I finally turned 16. But when I asked my parents about it, they were very hesitant at first. Of course, I didn’t understand at the time. I just wanted to drive. My parents needed to figure out the best way to teach me, though. So it took another full year before the process began.

I started off with a typical driver’s education class, but I couldn’t handle the class itself. The workload was stressful, and there were so many other kids in the class that I just couldn’t focus on anything. My mom found a special mail-in course I could take instead. I read over a large book and had to take a test after each chapter with a licensed teacher watching. It worked. I passed the course and eventually got my learner’s permit.

Then the real work began. I will never forget that first day my dad took me out to practice. We arrived at an empty parking lot. My dad told me to get out of the car, and he brought me to the front of it. He instructed me to simply feel the hood of the car, and then to imagine it hitting something at 35, 45, or even 55 miles per hour. I truly began to understand and respect the power of the vehicle.

It was time to learn how to drive the car, and I realized it was a lot harder than I thought. As someone on the autism spectrum, I felt overwhelmed getting on the road with other cars. I started off in a business corporate center that had a road looping around, and it was probably another six months before I was ready to venture out onto an actual road. Then I would drive around outside the corporate center in a slightly larger loop, ending by going back into the corporate center where I was comfortable.

After about a year of practice, I passed my driver’s test. I’m so happy I learned how to drive. I actually found out later that my parents didn’t know if it would be possible, but they decided to let me try. I’m glad they did. Even though I’m limited on the places I can drive to, at least I have a little bit more independence.

I struggle with areas of construction and large highways. If there is a detour, I get extremely nervous. And since the GPS is distracting to me, I need to know exactly where I’m going before I leave. But I’m able to drive locally, and my loop has gotten larger over time. My autism diagnosis might have slowed me down at first, but I’m still moving forward!

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When You and Your Autistic Child Need 'Roadside Assistance'

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Imagine your body is a car engine.

Sometimes it ticks along quite nicely, cruising down the smooth road with no bumps, potholes or distractions. When your engine is purring like this you can relax and take in the view, enjoying the ride as you go.

For my autistic son, this smooth road is his comfort zone. On this road he is at his most independent and communicative. He knows where he is, it’s safe, familiar and predictable. He needs nothing more from me than simply knowing I am there in the background should he need me, like a roadside assistance card in his back pocket. He knows I’m there to fall back on.

Now imagine you didn’t sleep well at all last night and you’ve been awake for hours worrying about something, so your engine is running a little sluggish today. The road has become harder to maneuver, and see you’re way past any obstacles. The bright sun could be dazzling your vision or the traffic may be building up around you, and you can’t see your way through. Your engine begins to overheat, and you need help.

When this happens for my son, it becomes harder for him to be independent. His vital functions start to slip, and his ability to communicate steams away from him. His engine overheats, and the alarms set off telling me there is an unseen problem occurring. My role as his parent then becomes like the recovery truck that restarts his engine. I patch him up and follow him home to make sure he arrives safely. Or I become the onboard Sat-nav that talks him through the busy city center in a calm voice to get him home in one piece.

Finally imagine yourself speeding along an unknown road and your brakes won’t work.

You can’t stop yourself.

You’re no longer in control of what’s happening to you or your engine, and panic sets in. You feel like you could go over the edge of the cliff at any moment. Or your engine becomes so overheated that you can’t carry on anymore. You’re at crisis point, and all functions shut down.

For my son, this is where I become the emergency services that recover him and get him to safety. My tool kit of love, instinct, and resources enables him to scramble to safety and begin to recover. I carry him home and protect him from the glares of ignorance that pave the way on this road. I forward think, and helicopter around him ready for the explosion that could come at any second. On high alert (just in case) at all times, my adrenalin is pumping and I can feel his pain as if it were my own.

This is our daily life.

The road my son is on from minute to minute dictates how his engine will cope. The environment is the single biggest factor that controls his ability to function in our neurotypical world. He has good days and bad days, and so I float in between being the recovery contact card in his back pocket to being his blue flashing lights of recovery from hour to hour and day to day.

But sometimes as a family we step out of our comfort zone for more than a few hours — like we did this week on our family holiday.

A week on an unknown, unpredictable bumpy road.

So this meant my son’s engine was on overdrive for not a few moments, hours or even days, but for a whole week. His little engine was working really hard every second of the day to cope with every new smell, sound and sight he faced.

And as a result, I was on high alert too… 24/7.

Unlike when we are at home and he is in his comfort zone, on holiday I didn’t have time to build up my energy and recoup myself. So by day five, both my son and I were tired.

Tired on being on high alert all the time.

I became aware I was becoming snappy with him, and finding myself wanting to withdraw more and more. I got cross with myself for feeling like I needed a break. But simply put, I needed some roadside recovery. My engine was running low. I needed a top up too.

How could I be the recovery truck 24 hours a day, seven days a week, with no break and no top up of fuel?

Just as I recognize and meet my son’s needs day to day, I too need to learn to recognize my own engine a little better too, and do something about it before I overheat.

My advice to fellow parents is this: find something that can be your roadside assistance card. Whether it’s a coffee break, a TV program you can escape into, or family member who can babysit while you have a bath in peace.

We all need a little help sometimes. We’re all human, and the bumpy roads we all find ourselves on can take its toll at times if we don’t take the time to have our own recovery procedures in place every now and again.

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How Pokemon Go Is Making the World Larger for My Son With Autism

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We have gone to the same beach house rental every summer for the past six years. Every year, my now 10-year-old son Jack who has autism and anxiety hates to leave the house. He gets anxious when we do new things or go to places he hasn’t been. He could barely tolerate the beach. It is too hot, too sandy, too wet, too windy. It is sensory overload. If we can get him to go on the beach, it is short-lived and one of us has rushed to get him back to the house before or during a meltdown.

The last summer we were here, walking on the boardwalk was filled with anxiety and the fear of people looking at him and following him. I explained that everyone was just walking to the same place, they were not following him. It didn’t matter what I said; he was happiest when he was in the house. He has three older siblings, so we would take turns staying at the house with him.

This year, the day before we were to leave, my 17-year-old daughter showed him the Pokemon Go game. He was hooked. He asked to walk up to the library, the ball field, the school. My child who hates to leave the house is asking to not only to leave it, but to walk!  I was intrigued, so he explained the app to me. This is the best app ever! The next morning when we left for vacation, there was very little stressing. It was filled with excitement and anticipation of what Pokemon we could catch along the way.

Rest stops are no longer feared with people looking at him and food he won’t eat; they are potential Pokemon catching spots. The beach was where you could catch water Pokemon, so off to the beach he went. In the process, he had fun at the beach. He built sand castles with his sister. He laughed playing in the waves. I watched as he slowly began to trust holding onto his father as he went a little further into the water.

For six years I have watched other families play in the ocean with their kids. This was the first time I got to watch my son play in the waves, and scream with excitement. He would look to me for reassurance now and then, but mostly he was making sure I wasn’t missing what he accomplished.

Jack has asked to walk the boardwalk multiple times a day. On the first day of vacation, a teenager was stopped by a bench on the boardwalk. He looked up at my son and said “Did you catch the Pidgey?” I watched as my son almost made eye contact with this boy and said yes. Jack quickly looked away, back at his phone, but I could see the pride on his face. He was succeeding at something cool. He was just as good as this random teenager at catching Pokemon.

One night I told Jack we were going to try walking a different way home from the boardwalk. He was not happy with me. I could tell he was getting stressed. It wasn’t the “normal” way we walked home, it was different. He began to talk rapidly, as he does when he is stressed. I almost suggested we turn back and go the “normal” way home, when an Ivysaur Pokemon appeared on his phone. We stopped walking, he caught it, and magically his anxiety started to dissipate. He was caught up in the excitement of catching that Pokemon; it no longer mattered that we were walking on a different street home.

My son has a very limited diet, and he has a hard time tolerating sitting at a table with unfamiliar food and smells. Going out to eat almost always ends with a meltdown. We would have someone stay back at the house with him, or take turns eating while someone sat in the car with him.

This year we all went to a restaurant that had outside dining. We were able to get a table and sit outside on a porch. My son was able to walk up and down in front of the restaurant where we could keep an eye on him catching Pokemon, while the rest of us leisurely ate our meal.

Tonight as Jack and I were walking back home from yet another trip to the boardwalk, a group of preteen kids on bikes stopped near us, shouting as they were trying to catch a Bulbasaur. Instead of turning away and hoping they wouldn’t notice him, Jack pulled out his phone and proceeded to catch the Bulbasaur too.  The kids rode off on their bikes, but Jack felt included, for he too was searching for Pokemon.

Jack asked me if people in Antarctica were looking for Pokemon. I didn’t know if they were, but what I do know is that Pokemon Go has made my son’s world larger… Thank you Pikachu!

The Mighty is asking the following: What was one moment you received help in an unexpected or unorthodox way related to disability, disease or mental illness? Check out our Submit a Story page for more about our submission guidelines.

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