Mother and daughter holding hands, walking out door of home on the way to school

When My Daughter on the Autism Spectrum Said, 'It Was a Very Bad Day, Mummy'

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I collected my 8-year-old daughter Little Miss H from school yesterday. “It’s been a very bad day, Mummy.”

Standing in the playground I knew it had been. I could tell by her gait, her facial expression, the purple bags under her eyes against her too pale skin, the sadness of her aura. She walked slowly towards me, scuffing her boots along the salted concrete of the playground. Her eyes downcast and her hand up to her mouth chewing her sleeve, her water bottle hanging forlornly from her other hand. I knew we were in for a tricky evening.

I suppressed the urge to say, “Stop scuffing your boots” and “Stop chewing your sleeve.” Instead I held my arms open for her. She doesn’t usually like public displays of affection, especially at school (“It’s against the rules to hug and kiss at school”) but I could see she needed some overt love.

She didn’t come into my arms for a cuddle, but she was demure and allowed me to touch her arm.

Her water bottle broke that day and she was frightened she’d be in trouble. Mostly though, she was just sad. Disproportionately heartbroken actually. Change is hard for her. Saying goodbye to things is really hard. Her “stuff” keeps her grounded. To have a piece of it broken is like someone throwing a brick through your window. It’s devastating for her.

I reassured her the broken water bottle could be replaced.

We were due to take  her sister, Tiny Miss H, to an after-school activity and this was suddenly too much. With an unexpected burst of energy, Little was confrontational. These shifts can come out of the blue. The real issue was she wanted her safe space; she wanted to hunker down after an exhausting day.

The challenge for us is enabling Tiny to maintain after-school activities while at the same time supporting Little with her needs.

We managed to make it to the car.

Chats in the car are usually the most successful; no expected eye contact, the crowd and melee of the playground has dispersed and we are away from the source of stress. That’s when she said, “It’s been a very bad day, Mummy.”

It turned out she had felt “mobbed” and crowded around in the playground and didn’t have the ability to extract herself. She didn’t know what to do, what to say, who to go to for help. She’s carried that with her all afternoon.

The physical toll it took on her was visible. She was anxious, stressed and absolutely exhausted.

This on top of the broken water bottle made it “a very bad day.”

Within the seven-minute journey home, she said it was “a very bad day” about 12 times.

This is called echolalia; repeating herself is a form of stimming. It helps her cope with anxiety.

When she has bad days we do a “Mummy squeeze” to get her from the car to the house, and once in the kitchen we have a prolonged super-tight cuddle. She is so strong sometimes it hurts; I feel like a tube of toothpaste being squeezed, I can barely breathe. I squeeze back as tight as I can. “It was a very bad day,” she mumbled into my chest.

This helped her calm down and I was able to persuade her that while Tiny attended the Rainbow’s Pajama Party, we would buy a new water bottle.

“It was a very bad day,” she muttered later as she rifled through some books.

We successfully deposited Tiny at her pajama party but forgot her cuddly toy and blanket, which did not make Tiny happy. After that, I tried to persuade Little to walk with me to the butchers before going to buy her bottle. Little is normally reluctant to walk anywhere so I expected her to say no. Instead she said. “It was a really bad day, Mummy.” She was so well-behaved in the butcher’s they gave her a fudge. She decided it had been worth walking. “Still a bad day?” I asked. She raised and eyebrow, “Mmm” she shrugged, “it’s getting better.”

At the supermarket where we were buying her bottle, I persuaded her to make a practical and useful choice that would withstand at least some playground action. We’d been playful and chatty walking through the store. Things seemed to have turned around. I was still on edge, keeping it light, keeping her happy. Then we bumped into Tiny’s class teacher who stopped to chat. Little Miss went quiet and couldn’t make eye contact. Out of the context of school, her confidence had melted away and her anxiety kicked in. To a stranger this would appear as “shyness,” but it’s different. Selective mutism is an extreme form of social anxiety that results in an inability to speak. It is involuntary and more than simple shyness. I’m proud, though, as she did manage to squeak something to me as the teacher walked away. Once we were safely alone she was chatty again.

On the way out, the cashier told us the amount and Little Miss repeated it in various voices, over and over and over again. Anxiety making her repeat all the words. Echolalia. In some ways the opposite from selective mutism. Also anxiety-driven and not necessarily “appropriate” at times. I could see the anxiety ramping up so I needed a quick distraction. Her forte is maths, so her job was to tell me how much I still owed each time I produced a coin. That busied her brain, but in between each amount, she still repeated the total in a different voice. The cashier was patient and friendly complimenting her on the maths. The fact there was no queue and no one else around at that moment helped us enormously. I didn’t feel stressed or self-conscious, and Little Miss did her thing.

Back in the car she was relaxed, so when she asked for water and I didn’t have any, I suggested she run back in to buy some. My genuine intention was to buy time while I finished putting something away in my bag before going back in myself, but to my utter astonishment she said, “OK!”

So we talked about what she would do, where she would go, how to choose what she wanted, where she would pay. We talked about the change she’d wait for, the route back to the car and that I would not move from the spot I was in. We counted the stalls where we were parked for her to reference if necessary. It was a huge amount of information we covered.

She hesitated. She took the coin. She ran. She went around the corner. I watched and watched and watched, heart hammering and holding my breath until finally she was running back with a bottle of water in her hand, a smile on her beautiful face, pride in her eyes and flushed cheeks to show for it.

She had gone round the corner to the door of the shop, walked in, turned right to the fridge and grabbed the water. She stood in the queue with two people in front of her and waited calmly, “Feeling very nervous, Mummy,” and when it was her turn the same lady recognized her and helped her through. I’m still not clear whether she actually spoke, but she waited for her change, and ran back to the door, turned left, round the corner and sprinted back to the car “seven spaces down.” She climbed in, out of breath, and asked me to open her water. “I’m so proud of you darling,” I told her. “I’m really proud of myself,” she said.

She did it. I smiled with tears streaming down my face as we drove to collect Tiny.

“It was a very bad day, Mummy,” she told me at bedtime, “but it ended well.”

Follow this journey at H2Au.

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Thinkstock image by monkeybusinessimages

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five power rangers walking together

My Review of the New 'Power Rangers' Movie as Someone on the Autism Spectrum

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Warning: Spoilers below…

Growing up in the ’90s, I was completely obsessed with the “Power Rangers” TV show like many of my peers were. To show you how far my fandom goes, one of my first crushes was on the Pink Ranger and one of my first Halloween outfits was dressing up as The Red Ranger when I was 6. This is why, when I heard the news they were coming out with a brand new Power Rangers movie, I was very intrigued to say the least.

Then I heard through countless news stories that the Blue Ranger in the film has autism…

At first I wasn’t necessarily sure how to feel about it. Most people I talked to before going into the film have critiqued it, asking why an autistic actor wasn’t cast in the role. Others I’ve talked to wish the Power Ranger was a female character on the spectrum based on the lack of female characters with autism in our entertainment industry.

While I agree that we do need more autistic actors in entertainment today and the need for more female characters on the autism spectrum, my overall review of this Power Ranger with autism was positive.

RJ Cyler, who plays Billy AKA The Blue Ranger, did his homework and was one of the standout characters for me in this film. From the earliest moments of the film, we learn that Billy is on the spectrum when he
confesses to Jason AKA The Red Ranger. One moment in particular that touched me during this dialogue was Billy telling Jason, when sharing about his autism diagnosis, that “my brain doesn’t work like yours.” Jason responds, “That’s not a bad thing.”

Often in our community this is a common expression of how those on the spectrum feel. I know that’s how I felt growing up, and in my opinion, the moment was expressed with a lot of class. While our brains may be wired differently, we all have a longing to connect with others in some way. It may not be obvious at times, but
Billy’s wanting for friends is something that resonated with me as someone who grew up being limited in my social abilities.

Throughout the rest of the film I recognized more signs of Billy’s autism diagnosis, from the need to have everything lined up (his pencils on his desk) to feeling uncomfortable being touched by others. Billy also has a very good mind for numbers and was able to indicate different dates and times certain situations happened. At times it felt like his character may have fallen into the “Rain Man” stereotype, however, I didn’t believe it was stressed upon to a point where it felt like too much.

Mainly, Billy’s role was refreshing as he reminded me of several of my mentees who are on the autism spectrum. These individuals are loyal and often honest to a fault. While I applaud the film for giving us one of the first superheroes with autism to be portrayed in film (as many people with autism at times connect autism as their “superpower”), I hope this spotlight will give us the opportunity to discuss the entire spectrum of autism.

As an autism film consultant, I’ve worked on two films with two autistic characters. One of them was the 2011 film “Joyful Noise” where Queen Latifah’s character in the film has a son with Asperger’s syndrome. He knows a great deal about music and is also very bright. The other film I consulted for was the 2015 film “Jane
Wants a Boyfriend
” featuring a woman character with autism who’s trying to find her first relationship. She has a knack for costume design.

While I believe these roles are terrific, I also believe we need to make sure the stories of more autistic individuals and families are being told as well.

As for the new Power Rangers movie, I recommend it to not only the autism community but also anyone who is a fan of solid action movies. As they talk about the potential of making sequels, now I’m excited to see how they may be able to develop Billy’s character to discuss even more of strengths and challenges as someone
on the spectrum. I know I’ll be part of that group going to the theaters to see it.

A version of this blog originally appeared on Kerrymagro.com.

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Photo source: YouTube video

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The Moment I Suspected My Child Could Be on the Autism Spectrum

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My son, Donovan, and I held hands as we walked to our neighborhood park. I talked and he listened and smiled. It was a gorgeous day. The sky was blue and clouds were spread out here and there across the sky. It was a hot day, but not the type of humid that makes you feel sticky, which is expected for the middle of summer in Chicago. I remember every detail of that day because I feel it changed our lives forever.

Although the playground was still out of sight, the abundance of giggles and playful screams told me there were more than a few kids at the park. I started to get a little nervous. Donovan had been diagnosed with an expressive speech delay at 2 years old; he had difficulty holding conversations, which made playing with kids his age a challenge. Some kids wanted to know why he didn’t talk the way they did and some had even laughed at him when he repeated the sounds they made and it made him sad.

I wanted trips to the park to be just as fun for him as they were for me when I was little. I took him out to play before noon hoping there were fewer children around, but we were facing a park full of climbing, running and jumping kids who’d all want to talk and play.

Donovan walked through the park gate, sat down on the bench and stared at his shoes. I knew I could either take him home or help him face his fears — so I encouraged him to play.

He wandered over to a group of kids who were in the middle of a game of tag and within minutes he was running back and forth chasing and being chased. He was having a really good time. Then the game stopped. One of the older boys wanted to play soccer. He set up cones, grabbed his ball and asked if my son could play, too.

Donovan joined the game but he had a difficult time. At some point the kids stopped their game and all eyes were on my son. I knew something was wrong.

Many of the strategies I was using to help my son communicate came from websites for children with autism, so I was becoming increasingly familiar with the traits. I looked at my adorable little 4-year-old son and began to suspect autism could explain his difficulty communicating and interacting with others.

I believe my son experienced his first meltdown caused by sensory overload. I knew it was best for us to leave. We went home and I gave him a bath. After, he sat down to play and within minutes had fallen asleep on the floor.

As he slept, I called hospital after hospital in hopes of getting him in for a developmental evaluation. I was told over and over again there was a waiting list and the earliest appointment was 6 months away. Thankfully, a sympathetic speech therapist found a way to squeeze my son in her schedule just a few weeks after the episode in the park. Occupational and behavioral therapy were not as easy to get into.

My son was diagnosed with autism just after his 5th birthday. I can’t help but wonder how different his life would have been if he’d been diagnosed earlier. Now, as I reflect on the years leading up to the moment at the playground, I can see the subtle clues I missed. Things like not crying after an especially hard fall, spinning in circles without getting dizzy or the cute but unusual way he’d occasionally squint his eyes while walking around the room. These were possible signs of having a hard time adjusting to the environment around him or craving stimulation, which can be seen in autism.

I can’t begin to count the number of people who told me to wait to seek out services for my son; they thought he would eventually grow out of his behavior and one day speak on his own. In my opinion, waiting is not an option. I believe early intervention helps put children on the path to success. As a result of the services he’s receiving, my son is learning how to manage impulses and communicate effectively. Today he’s a bright 7-year-old who loves school and enjoys playing with other children at our neighborhood park.

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Photo credit: Rebecca Sinclair

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Legoland employee talking to a young boy.

Legoland Florida Unveils Sensory-Friendly Features for Visitors on the Autism Spectrum

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To make its theme park more enjoyable for everyone, Legoland Florida is implementing a number of changes that will make the park a better place for parkgoers on the autism spectrum. Last March, the park announced it was partnering with Autism Speaks to make a number of sensory-friendly additions to its Winter Haven, Florida location. This April, as part of Autism Awareness Month, the park will unveil those new features.

Autistic visitors will now be able to take advantage of the theme park’s new “Hero Pass,” a free pass that allows those with autism and their families to skip the line at popular attractions. The park will also feature multiple quiet rooms stocked with noise-cancelling headphones, weighted blankets, sensory-friendly toys and tables where kids can play with Legos.

Children with autism can also utilize social stories created by the park – illustrated stories designed to walk visitors through rides and other park attractions so they know what to expect. Legoland is also training its new employees, known as “model citizens,” how to interact with guests on the autism spectrum and their families.

Autism Speaks applauds the efforts of Legoland Florida Resort to provide special accommodations so that guests on the autism spectrum can maximize their park experience,” Karen Bacharach, senior director of Autism Speaks, told The Mighty.

Those interested in visiting Legoland, and living in Florida, can get discounted tickets through the North and Central Florida chapter of Autism Speaks, The Huffington Post reports.

Photo Credit: Benjamin Peacock/LEGOLAND Florida Resort

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This April Accept My Family and My Son on the Autism Spectrum

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April is autism awareness month. I hope I spread awareness daily through my stories of home life. I don’t want you to wear a specific color or donate to a cause. What I do want you to do is accept my family norm and learn from our stories.

Autism became most apparent to us when it entered our lives in October of 2010. Gabriel was 18 months at the time and began to regress in many ways: speech, motor activity and eating. In hindsight, signs had been there before, but he is our first child so how could we know? We called Early Intervention and soon found out about his diagnosis. I adore my son. He has autism and he is like no other being in the world. I’ve never seen a more loving, sweet, kind, well-behaved child. His mannerisms are gentle and he seems generally happy to me.

Do I want a “cure” for his autism? No. But I do want his life to be easier. I want him to be accepted, to be welcomed, to not be discriminated against. Watching my son’s delight as he witnesses other kids having fun is pure joy. I believe he simply wants to be.

I’m tired of being told, “Nah, it’s not because he has autism.” Or being told his therapy appointments or specialized activities are “excuses to turn down other things.” I won’t go into detail about the amount of therapy and understanding a child on the autism spectrum might need. These are needs, not excuses.

When I tell you my son has autism, please don’t say, “I’m sorry.” Why should you be sorry? I am not sorry. I adore my son and I am proud of him. Don’t say words like “normal” or the “R” word. Don’t say, “My child can’t do that either,” assuming challenges are easy to overcome. And don’t tell me, “He’ll grow out of it.” It? A lifelong developmental disability?

Look at my son’s abilities. He is authentic and genuine and shows no guile. He is gentle and caring — he shows empathy and love. He understands everything. He is smart, reads at 4  years old, can make his point using different forms of communication. He even ice skates and plays like other children. My hope is once you meet and know Gabriel, your view of autism will be forever changed.

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Thinkstock image by DragonImages

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Autism Awareness: Be Aware of Our Existence

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I spy with my little eye, something beginning with AA.

Not Alcoholics Anonymous. No, not the Automobile Association. I’m talking Autism Awareness.

In the run up to Autism Awareness Week and Day and Month and Millennia, I’ve been thinking about what I really want the world to be aware of.

Most people have heard the word “autism.” They’re aware it exists, but that might be about it.

Even those who have autistic family members might not recognize the adults in their midst. No, I don’t look like your child, for much the same reason you don’t look like my 3-year-old. Autistics grow up, too. An adult autistic — no matter how verbal or not — has still had a lifetime of acquiring skills and learning and developing, that a child has not.

When experts talk about autism — trainers at work, speakers at conferences  — they often seem to forget there will be autistic people in the audience. We become “they.” We are “othered” by the very people who are supposed to know the most about us.

I don’t want you to just be aware that autism exists; I want you to be aware of our existence. We are the mothers at the school gate, the co-worker in your office, the woman who sits at the same seat on your bus, the man walking his dogs.

We are not an alien species; we live among you.

We’re your friend who speaks passionately about the things she loves and might be terrible at keeping in touch regularly. We’re the coach who is obsessed with bringing the best out in everyone. We’re the paramedic who solved your issue. We’re the doctor who worked out what was wrong.

We’re here. Everyday and permanently here.

Every day we meet the world more than halfway. We do our best to do things your way. We let ourselves get swept along by your rituals, and then behind closed doors we recover.

There is no one type of autistic. Some of us are caring and lovely and kind, some of us are selfish and mean. In other words, we’re people.

People who happen to have a processor that provides them with questions, while other people’s processors might give them answers. That’s the only difference to me. That is my definition of autism.

On Autism Awareness Day, be aware. When you speak about autism we are listening. We love it when you get it right, and we love it even more when you hand the platform to us and let us speak for ourselves.

Be inclusive. Be actively inclusive. Look at spaces critically, ask yourself how you already meet people’s sensory needs.

We need the world and the world needs us. We are your problem-solvers, your repetitive-routine lovers, your I-would-rather-get-on-with-work-than-chat workers.

If you think you’ve never met an autistic adult, you’re wrong. You just were not aware.

We are here, planning our quiet, unsociable revolutions. Waiting for the world to accept us and to see that “autistic” is not a pejorative term, it’s just factual, it just is. It doesn’t mean “problematic” or “stupid” or “un-empathetic.” It’s just a social-processing issue. No more, no less.

My art teacher once told me I was a cat in a world of dogs — that I didn’t need people the way others do. Did you know that Catsuit is an anagram for autistic? Coincidence? Well… yes, but that doesn’t mean I can’t raise my eyebrows suggestively and make it sound meaningful.

Oh, and autistic has two i’s. If you noticed that small detail, then perhaps you’re closer to autism than you think!

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Thinkstock image by Rawpixel Ltd

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