Courtnie Rederick

My Deepest Hurt

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Courtnie1My 6-year-old son was diagnosed with autism spectrum disorder when he was 3 years old. At the time of diagnosis, I had him enrolled in a traditional preschool. The preschool was absolutely wonderful and they did everything in their power to accommodate my son.

I started the process of interviewing local kindergartens during my son’s last year of preschool. At the time, my older son was attending kindergarten at a local private school that just happened to be located above my other son’s preschool. Naturally, I felt that it would be best if he attended the same school as his older brother. So I decided that I would reach out to the school’s principal to discuss my son’s needs.

My son has high-functioning autism. He is completely verbal and he excels in reading. At the time of pre-kindergarten enrollment, he struggled with transitions and self-regulation. Meltdowns were avoided by the use of a timer and a visual schedule. In my heart of hearts, I knew that my son would do well in kindergarten. He had already made huge gains through intensive therapy.

Unfortunately, the school principal had little understanding of the autism spectrum. She told me that my child could only attend school as long as his ABA therapist attended with him. In addition, she told me that initially he wouldn’t be allowed to come to school if his ABA therapist couldn’t attend on a particular day. She felt that it would be necessary for him to prove himself. This absolutely devastated me! My feelings were this: “Why does my son need to prove himself? Is it because he has autism?” As an autism mom, this was one of the most devastating experiences of my life.

During the time, I began to do a lot of soul searching. I ended up seeking advice from my mom. She made a point that ended up resonating with me. My mom said, “If you hadn’t told her about his autism diagnosis, she would have never known.”

I began to ponder this statement. At this moment, society is autism aware, but are we truly accepting of people on the spectrum? If I could say one thing to people who don’t have experience with the spectrum, it would be, “Don’t be quick to make assumptions about a child with autism. All children are unique and they deserve to be treated as such.” Not every autistic child is Rain Man and not every autistic child is a savant. Autism spectrum disorder is called a spectrum for a reason.

I ultimately decided to send my son to the local public school. When I made this decision, I also decided to send my older son as well. As a mother, I did not want my little guy having to prove himself on his first day of school. I am pleased to say that my son has done exceptionally well this year. He is in a traditional kindergarten class. He has an extremely supportive team of individuals who have proven that they are dedicated to helping my son succeed.

This isn’t to say that he hasn’t had difficult days, but as his kindergarten teacher has said, “All students have trying days. Your child isn’t any different.” If I had to sum up this year in one sentence, I would say, “My son has rocked his first year of kindergarten!”.

Miriam Gwynne

Things To Do in the Summer With Children With Autism

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Summer can be long and stressful for any family, but for those who have autistic children the changes in routine, lack of structure, isolation from friends, and sensory issues can make holidays seem even harder. As a parent of two children with autism–one who has significant learning difficulties and is non-verbal–I often struggle with ways to keep the children occupied all day, every day, for nearly two months. My stamina, enthusiasm, and excitement are already beginning to waiver after too many late nights, early mornings, and far too many meltdowns.

However, I sat down tonight and decided it is not too late for things to change. Summer CAN be a great time for my family, and for yours too.

Not all of these will work for your children and many may need tweaking to suit your own family dynamics, but why not try something different? Try to have fun with your children even if they have communication or social difficulties.

Get Outside!
Fresh air is so good for everyone. It gives us a better appetite (something my ASD daughter really struggles with!), makes you feel happier and more relaxed, and doesn’t cost a thing.

My son needs 1-1 support at all times, but even he enjoys a bit of crazy golf or swimming. Lots of children are able to cycle, or if not, perhaps they can use a scooter, a trike, or even a skateboard. However they feel comfortable, get out and about with them together on a bird hunt, a picnic, a walk in the woods, a treasure hunt, or just a trip to the local park.

Neither of my children can hula hoop but we enjoy spinning the hoop, wheeling it to each other, and jumping in and out of it. There are often football teams looking for new members and a quick Google search may even yield a team for children with special needs.

Neither of my children enjoy sports or climbing, but my son still loves the swing and the slide, and we try and walk to these whenever possible, even if we need reins. Drawing with pavement chalk, playing hopscotch, kicking a ball, and picking fruit are all popular with my two (although I have to say my son eats much more fruit than he takes home!)

Miriam2Garden Play!
If going outside your own property is difficult with your child, what about playing in the garden? A cheap paddling pool (how about adding a little food colouring or blowing bubbles into the water to add something different?) or a sand pit can keep some children entertained for hours. Garden picnics can turn the most mundane lunch into something much more exciting for a fussy eater.

Trampolines, slides, summer houses, and large sit-in vehicles may be expensive, but could potentially amuse a sensory-seeking child for many a day all summer. Here is my young daughter having the time of her life watering the grass with a hose recently after a few dry days. Simple and inexpensive!

Go Somewhere!
A quick visit to your local tourist information centre or on sites like Days Out with Kids might surprise you with the local attractions that are suitable for your child. Some may even offer discounts for carers or children with autism or other disabilities, so it’s always worth asking. Some museums are even free! I recently took my kids to an airplane museum where my son’s favourite thing was the hand dryers in the bathrooms! The fact was we still went and on whatever level, he had a nice time.

Swimming, ten-pin bowling, the lifts at the local shopping centre, trips on trains or buses, pottery painting, the cinema (many have autism viewings), and a local sensory room are favourites for my two. Even just a few hours out of the house can really break a day up. To prepare my children I use Google Images and Google Maps, as this always helps ease anxiety about the unknown.

Sensory Play at Home
Miriam3Some days, due to bad weather, tired children, or the everyday struggle to get them away from screens, going out just doesn’t happen. My son misses his school sensory room so much when he’s at home all summer, so I try and find sensory activities to help him regulate.

Playdoh (under strict supervision, as my son eats it!), water play, burying toys in rice or uncooked pasta, painting (even water painting can be fun!), junk modelling (my unique way of recycling when it is wet!) baking, fake snow, shaving foam, bubble pictures, puppets, and making homemade musical instruments can all help my children overcome sensory avoidance or give them the sensory stimuli they seek.

My daughter loves jelly baff (bath good) but my son hates it, so using a basin instead of the bath helps a lot. We have made masks before, which for my daughter with selective mutism was a great way to avoid talking if someone suddenly came to visit. I am sure most families have built a den from blankets too!

Games With Rules
My daughter loves rules and fairness, so boxed games of any sort are a firm favourite. There are lots of adaptions of the traditional snakes and ladders if your child is more motivated by Frozen or Superman, for example. Other favourites are Guess Who, pairs, Hungry Hippo, hide and seek, and many of the Orchard games for children. For older children, Scrabble or solitary games like sudoku or word searches can help them unwind when they need some alone time. The key is to get involved with them while finding the balance between having time together and time apart. Some children with autism will struggle to take turns or wait, but simple quick games like Snap can be ideal to work on these.

Construction Toys
Legos are often a firm favourite of children with autism. While some children will prefer to be left alone to build and play, it is always worth encouraging teamwork and co-operation. Legos may be an ideal activity to have a playdate around or for siblings to work together. My two are still at the wooden blocks, Duplo and Mega Blocks stage but their friends enjoy Meccano, K’nex, stickle bricks, magnets, gears, and even marble runs.

Miriam4 Imagination
One of the biggest myths about autism is that children with autism lack imagination. The type of imagination some children with autism struggle with is “social imagination,” which involves joining in games already established by other children that do not have set rules. Summer is an ideal time to allow your ASD child to take the lead with their own imagination. They could dress up, play with dolls (boys and girls!) reenact in a dollhouse, play cars, or trains or castles, be a superhero or a pirate or what about a fireman?

Many children find reacting programmes or stories the easiest way to play, so why not watch the episode with them and join in? It doesn’t even need to be expensive! How about using an old roll of wallpaper to draw your own train track or road layout? Or put a blue towel on the floor to be the seaside?

I know some of you will have read this with skepticism. I know the battle to get your child off an iPad or computer or even to get dressed. I know all too well the anxiety that can come with try something new for many with autism. Not everything will work and that is OK.

Find a local support group or ask around to see if any places do times that are quiet or even ASD specific. Plan ahead for changing facilities, access, price, and parking, and always pack a camera!

Summer does not need to be a stressful time. Even trying just one new thing a week can create memories and smiles that make everything worthwhile.

Charlotte Llewellyn

Please Don’t Judge Us

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On a day not too long ago, Ethan and I were waiting in a queue at our local supermarket to check out. The time came for Ethan to hand over the box of strawberry ice cream cones that had been occupying him while I double-checked the list and unloaded everything onto the conveyor belt. Like many children with autism, Ethan has a tendency to become fixated by certain items and toys, and this box was one of them.

I braced myself for what I knew was coming next. Quietly and patiently, I tried to explain to Ethan that he had to give the box to the cashier, and then he would get it back. At that time we didn’t yet have a diagnosis for Ethan, so we didn’t have all of the tools that we do now to help Ethan understand the situation more clearly. All I could do was take the box from Ethan and give it back to him mid-meltdown.

This situation would usually end up going one of two ways: Ethan would either be too distressed during his meltdown to notice that he had been given back the box, or he would become his usual bouncing and smiling self, reunited with his box once more.

During that time, an older lady had appeared behind us in the queue. I suddenly felt very self-conscious, and mentally prepared myself for what I just knew she’d say. And she did.

“Oh dear,” she laughed. “You’re spoiled, aren’t you? You’ll get it back in the minute.”

I heard the words leave her mouth and enter my ears, and wondered who was she to think that was OK to say them to someone she didn’t know and knew absolutely nothing about. I took a second, and a deep breath, and turned to face her.

“Ethan is autistic. He doesn’t understand certain situations in the same way that other children and adults do. He is the most loving, gentle-hearted and kind child you could wish to meet. He isn’t spoiled; he’s just different. Don’t judge him–you don’t know him or us.”

I turned back to Ethan who, by that point, was happy he had his box back.

For now, Ethan is totally oblivious to the comments or judgements that are made by strangers around him. I feel compelled as his mother and protecter to shield him from strangers’ rude and negative comments, especially on days like the one I’m describing. I will carry on doing so until he is capable of doing it himself.

Do I still get self-conscious? Of course! As a parent, it comes with the territory. But my response has changed, as I’ve learned to let people’s rude comments go over my head.

Don’t get me wrong–some days I have to try really hard not to let someone’s comments bother me or affect how the rest of our day goes. But I know my son, and I know how he thinks. The thoughts of complete strangers are irrelevant to our family. As the age-old saying goes, “If you haven’t got anything nice to say, say nothing at all.”

Think before you speak. No two families are the same, and everyone’s journey is different.

Don’t judge us on our unique journey through life. Instead, we appreciate understanding faces and unlimited smiles. As another saying goes: “It takes 10 muscles to smile, but 100 to frown.”

Rachel L. MacAulay

‘Wow! My Autistic Child Is Socializing!’

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There’s no denying that the Pokémon Go craze has taken a few countries by storm. If you’re like me, you’re probably way past eye rolls at the mention of Poke gyms and Poke stops and more. But the incessant chattering about all things Pokémon Go has a huge silver lining—it’s helping to get many people (kids and adults) out of the house and socializing with strangers. Especially kids with autism. And that’s a wonderful thing.

Take a look at this heartwarming note from Brooklyn mom Lenore Koppelman about the impact that Pokémon Go has had on her son, Ralphie. Six-year-old Ralphie was diagnosed with autism and hyperlexia four years ago. He doesn’t interact with strangers and doesn’t tend to be very adventurous. He likes his routines and doesn’t typically like them disturbed. That is, until Pokémon Go.

Pokemon Go2

Since he started playing the game, his parents have noticed that Ralphie secludes himself a little less than he did before, and also talks more to the people he’s familiar with. Given the positive effects of Pokémon Go on her son, Lenore does recommend it to the parents of other children on the ASD spectrum, but cautions them to keep an eye out:

“It’s tempting for Ralph to wander off to find Pokemon, so I have to keep a close eye on him,” she said. “However, I don’t want to be so afraid of the dangers that I deprive him of the potential positive outcomes as well.”

Rachel L. MacAulay

Autism Didn’t Stop Him From Winning Taekwondo World Title

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TaekwondoEthan Fineshriber was diagnosed with autism at the age of three. As he got older, he did well academically, but not socially. “He basically had no friends,” said his mom, Mara. In order to get him to exercise, and to interact and engage with other kids, Mara enrolled Ethan in Taekwondo classes.

Ethan was interested from the first day, especially with the stuff he could learn and memorize. “He felt more confidence about himself,” said Mara, “and it helped him kind of come out of his shell.” Pretty soon, his instructors recommended that he consider competing in the sport.

Ethan started competing in national competitions and winning them. He then set his eyes on the Taekwondo World title. After three years of training, 11-year-old Ethan won the ATA World Championship with a nearly perfect score of 999. “I felt nervous that I wasn’t going to win, but I thought I had a chance.” said Ethan. “Then the judges called the number and everybody around me went insane.”

His friends, explained a tearful Mara, rushed the ring and hoisted Ethan onto their shoulders. “They hugged him and congratulated him and shut the ring down.” It was a dream reached not just for Ethan, but for Mara too: Her son had gained confidence and more friends than she could have imagined.

And Ethan’s not done yet—he plans to keep training, and keep winning Worlds.

Charlotte Llewellyn

Thankful for the Kindness of Strangers

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Soccer Ball Kid

Two weeks ago, we were on one of our Sunday walks around Cosmeston Lake, heading off of the usual footpath that most people take around the lake. There were two men in their late ’20s/early ’30s kicking a ball back and forth. Ethan saw the football and said, “I want to score a goal.” With that, he bolted for the men, leaving me and my husband, Jamie, in the dust.

We are used to this sort of thing—calling his name and saying “Stop!” only works in certain situations—and this wasn’t one of them. As we’ve discovered, children with autism tend to have no awareness of danger at all. Ethan doesn’t know to look left and right before we cross a road, and he would be the first person to run flat out around a busy supermarket car park, regardless of the fast cars.

Jamie and I ran towards Ethan, picking him up just before he got caught in the crossfire of the game being played. We apologised for Ethan adding himself to the game and headed off on the path once more. As we walked away, a voice caught my attention and I saw a ball heading towards us in the corner of my eye. One of the men had taken it upon himself to kick the ball to Ethan, saying, “Here you go!” Ethan hesitated at first, but with a little encouragement, he kicked the ball back to the two men on the grass.

This activity only lasted for about three minutes, but that was long enough for Ethan. He didn’t necessarily know how to play the game; he just wanted to score a goal. In Ethan’s mind, no words were needed either—he got to kick the ball, but he wasn’t really bothered about communicating with the people around him. We told Ethan that the game was finished; otherwise, he would have spent the rest of the day kicking the ball back and forth with the men. That’s something that neither we nor the men would have wanted to do. Ethan began to wander away, so we thanked the men for including him in their game. They responded, “You’re welcome. No problem at all.”

I don’t think they truly realised what they had done. In their minds, they had just let a little boy play football with them. To me, it was much more. They didn’t hesitate to play with Ethan. They didn’t get too close to him; they simply allowed him to have fun with no questions asked. In turn, Ethan got to do something that he loved to do, usually with daddy, but this time with strangers. He wanted to include himself, and have himself seen and heard.

To the men who made Ethan feel welcome, who asked no questions, and who let him join in with their game, THANK YOU! Ethan walked away happy and so proud of himself for playing football and scoring a goal.

If there were more people around who didn’t judge, who just treated everyone in the same way, the world would be a much nicer place. We, as parents, wouldn’t feel like we are constantly being judged by those who don’t understand what we’re going through as a family. We wouldn’t feel on edge all of the time and we wouldn’t have to have our guard up constantly; feeling compelled to answer to every ‘tut’ or disapproving look that strangers give us in public. So, thank you, for turning a family walk into an even more special outing.

Rachel L. MacAulay

Teacher Tells Student With Autism, ‘These Tests Only Measure a Little Bit of You’

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Ben1Gail Twist was so surprised, and gladdened, by a letter sent by her son’s teacher, that she posted it on Twitter, along with the words: In tears. A letter to my 11 yr old autistic son from his school. “These tests only measure a little bit of you.”

Her son, Ben, attends the Lansbury Bridge School and Sports College in St Helens, U.K., a school for children with “complex learning difficulties.” This was his first year at the school, after he switched from the mainstream school that he’d attended for years.

Ben was the only student at Lansbury Bridge this year who took the SATs; unfortunately, he didn’t pass them. Instead of simply sending the results to his parents though, assistant head teacher Ruth Clarkson wrote the letter below, and sent it directly to Ben. In it, she recognizes that the tests only measure a small part of Ben’s knowledge and the person he is. She goes on to list his talents that she and the other teachers clearly see, including his kindness, his musical ability, his ability to make and keep friends, his artistic talents, and so much more.

Ben’s mom, Gail, told The Guardian: “He is all of the things they wrote about him – he is an amazing person. I think their words will stay with him if we keep reminding him what they said about him. When I told him he said: ‘Wow, do they really think all those things about me?’ It’s just a beautiful thing to do.”

She went on to say, “He’s such a sensitive and loving child and he’s got an amazing sense of humour – it’s amazing that the school are able to recognise that our children have other qualities than what they are tested on.”

With the current controversy about our education systems requiring teachers to “teach to the test” instead of to the individual, it’s heartwarming to hear about teachers who go above and beyond to recognize their students’ achievements. Having educators in our lives who recognizes our abilities and talents, especially when tests can’t measure them, is simply priceless.

Rachel L. MacAulay

Making a Connection: Photographing Children With Autism

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Anna1As a professional lifestyle photographer, Jessica Orlowicz of Peach and Port Photography takes stunning photos of families using nature as the backdrop. She also lends her talent to a non-profit organization called “Spectrum Inspired,” taking both color and black & white photos of children on the autism spectrum in free, individual sessions, where she strives to capture the essence and personality of each child.

“It’s sometimes rare to catch eye contact, which makes those images a little more powerful to me. The unique thing about photographing children with autism is that it requires a little more patience, but sometimes having a camera between you two takes the pressure off of them to interact directly. They can be their wonderful selves, and you’re just there to document it.”

But it’s one of her own children who serves as the inspiration for her photography. Anna, one of Jessica’s daughters is autistic, with a “complicated personality,” as explained by Jessica. “Some days the only way we connect is through the lens.” Whether sharing a quiet moment after a meltdown, or capturing a tender interaction between Anna and her sisters, it’s beautifully apparent that Jessica knows how to use her camera to connect to the very essence of kids with autism.

This unplanned shot illustrates how much my toddler loves and cares for her big sister, who is autistic and doesn't always accept touch. She was tenderly petting her and asking if she was O.K. in between strokes. ~ Jessica

This unplanned shot illustrates how much my toddler loves and cares for her big sister, who is autistic and doesn’t always accept touch. She was tenderly petting her and asking if she was O.K. in between strokes. ~ Jessica

 

Rachel L. MacAulay

Firefighters vs. Autism Works to Prevent Tragedies

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Firefighters vs. AutismJustin Lewis is the dad of a child with autism, and a firefighter in Golder Ranch, Arizona. Because of both roles, Justin became concerned with the number of children wandering away from a safe environment (50% for children with autism), and the number of deaths of kids with autism that were attributed to drowning (91% for kids under 14, according to the National Autism Association). So, in 2013, he founded the non-profit organization, Firefighters vs. Autism, which operates out of Tucson.

The group’s mission is “to end wandering-related drownings and childhood deaths in the autism community.” They do this through education and awareness, so that the larger community—as well as parents of children with autism—learns about the threat of wandering and drowning for people on the autism spectrum. Firefighters vs. Autism also helps provides special training for firefighters and first responders, who typically aren’t trained to help children and adults with special needs.

As a firefighter, Justin knows that many emergency situations are preventable of people paid a little more attention and took a few relatively simple precautions. Therefore, the group raises money to pay for swim lessons, pool fences, autism service dogs, and equine therapy, for families that can’t afford it otherwise. They also host workshops and seminars to educate and spread the word about drowning and wandering awareness.

Firefighters vs. Autism has pioneered its own PASS alarm—Puzzle Alert Safety System—for southern Arizona, whereby members of the community can sign up to receive an alert any time somebody with autism goes missing in their specific area. The alerts are sent via email or text, and help establish an active network of people looking for the missing person.

For Justin and Firefighters vs. Autism, it’s all about preventing tragedies. And the best way to do that is through education, awareness and effort.

Rachel L. MacAulay

Sensory Friendly Kits Available to Diners at Mary’s Pizza Shack

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Autism Kit2Mary’s Pizza Shack in Northern California has begun offering “sensory friendly” kits to customers. The kits, which were first announced in April, are part of a joint initiative with Anova, a local non-profit autism services organization. Anova reached out to other Sonoma-based restaurants, and Mary’s was the first chain to express interest.

Mike Clark, the manager of the Mary’s Pizza Shack in Sonoma Plaza, said, “We have a number of employees whose lives have been touched by autism or learning differences in one way or the other and so our staff was 100 percent enthusiastic about our partnership with Anova.” He wants to show sensory-sensitive people that, “they are welcome here.”

New sensory-friendly kits show people with sensory-sensitive conditions that they are welcome here.

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Anova co-founder Andrew Bailey noted, “Many families [choose] not to dine out or enjoy many activities because of the overwhelming challenges involved. We want to turn that around by equipping restaurants such as Mary’s Pizza Shack with tools that will help create a stress-free dining environment for those families in need.”

The tools are meant to keep sensory-sensitive individuals, no matter what their age, from feeling overwhelmed in a public place. They include a weighted lap pad, noise-reduction ear muffs, a chart with an emotional scale on it, assorted sensory toys, and one small item for the child to take home with them. They come packed in a plastic “toolbox” with instructions and the children and families are free to choose and use what they’d like. All of the items are thoroughly cleaned before being packed back into the kit for the next person. The kits are free and available to anybody upon request.

Each of Mary’s locations carry the kits, and each restaurant has a sticker on their window advertising their availability. The chain also plans to have tent cards on each table informing diners about the kits. Anova hopes that word about the sensory-friendly kits spreads through word-of-mouth, and with the help of the local radio station, and that other restaurants and businesses sign up to offer the kits. Anova’s end goal is to encourage inclusion in their community, and also enable families with special needs to go out to dine, shop, and participate in typical community activities.

Additionally, Anova has providing sensory training for all employees of every Mary’s Pizza Shack restaurant, and has developed an informational video for them. Mary’s Pizza Shacks are now the first sensory-friendly restaurants in Sonoma County.