It Was Never Just a Steak: Date Night as an Adult With Autism

Laura James, a journalist with autism, has learned to navigate the world as best she can. Going out to dinner, she says, “works best when I have a number of rules in place.” These include: knowing the restaurant well, knowing the menu well, and knowing what she’s going to order before she even gets there. But what happens when she and her husband go to a new restaurant?

Watch the video to see how a nice night out can become overwhelming for somebody with autism. Would you cope as well as Laura has learned to?

To the Mom at the Water Park: Your Kids Gave Me Hope

When Stephanie Skaggs took her 5-year-old daughter Baylee to Kentucky Kingdom last Friday, she didn’t plan on talking to another mom there about her kids’ behavior. But before their visit to the water park was done, that’s exactly what she did. And, because Stephanie wasn’t sure she got her point across, she decided to tell the entire story on her Facebook page when she got home.

What awful thing happened that forced one mom to have to talk to another mom about the way her kids had treated her daughter? Well, it’s not what you’d expect.

Baylee has autism, and is mostly non-verbal. Stephanie had been working with Baylee on waiting in line for the water slide as patiently as possible. She had developed a whole routine for her daughter, and her daughter was learning it, and showing more patience, each time they got in the line. Unfortunately, not every child successfully waits their turn, and soon enough, Baylee was getting cut in line. As Stephanie wrote, “for the most part no big deal, except for a kiddo like mine, who really doesn’t mind much that she had to wait longer, but is very upset that the steps of the routine she just learned are now out of whack.”

As parents, grandparents, and teachers know, coping with unexpected changes is not something that comes easily to most kids with autism, and Stephanie braced herself for either Baylee’s reaction or other people’s reaction to Baylee’s reaction. That, Stephanie wrote to the unknown mom, “is when your daughter looked up at me and said ‘she can go ahead of me.’” Baylee hadn’t even had time to get upset, so Stephanie chalked up the girl’s behavior to her just being sweet and well-mannered.

It wasn’t long before Baylee got cut in line again, and again the child in front her—this time a boy—let her go before him. Stephanie again praised a child she didn’t know for his kindness and good manners. She was surprised to find two different children who seemed to intuitively know how to be kind to Baylee. Then she saw them together and figured out they were siblings.

“I told them both how great it was that they looked out for someone who was different.. and the difference that small acts of kindness make even if it doesn’t seem like much. They really touched my heart.”

Then Stephanie asked the boy to point out his mother, so she could praise her for raising two compassionate children:

“When I came to you and told you about my experience with your kids and told you that they were super kids and you are doing a great job, you said ‘I don’t know about that.’”

Most of us are never totally sure that we’re raising our kids as well as we intend to, or that they’ll take our words and turn them into actions. It’s obvious to all of us, except this mom, that she’s doing a fantastic job. We could use more like her.

As Stephanie went on in her Facebook post:

“Sure your children’s kindness helped in that moment to avoid a meltdown, and that is kind of a big deal for kids on the spectrum, but I will tell you what is an even bigger deal though, and that is that it gave me some HOPE! When I looked at those sweet little faces, filled with pride as I praised them, it made me happy to know that more moms are raising their children the way you are! So I just wanted to take the opportunity again to thank you and let you know you are doing a really really good job!”

We heartily agree!

Apple Store Field Trips: Apples, Smiles, and Superman

Apple Store Visit

As an Apple Distinguished Educator and the head of Instructional Technology at Wildwood School in New York State—a comprehensive educational program for students with autism spectrum disorders, neurological impairments, and complex learning disabilities—I am thrilled with the opportunity to set up multiple trips to our local Apple store. I work closely with our educators and the store’s educational team to provide a fun and meaningful learning experience for our students with autism and developmental disabilities.

Recently, some students from every level, along with some of the adults in our Day Hab program, went to the Apple store at Crossgates Mall in Albany. We had already decided on the general topic, and students would be creating digital memory books using iPads and the app Comic Life 3. During past field trips, we used iMovie, Keynote, and several other creation tools.  To prepare for this specific trip, I had asked the staff to familiarize themselves with Comic Life 3 and have the students do some pre-planning so they could focus on the experience when they were in the Apple store.

The beauty of these trips is that all students have the opportunity to share their voice. With the support of the educational store team and our staff, students become creators, authors, communicators, and collaborators. No matter the device, students can create and share their voice by whatever means works for them. Whether they use built-in accessibility features to communicate in pictures, voice, text, or a combination of two or three, every single person creates a product that represents who they are and the memories that are meaningful to them. Every single individual has a voice and has the opportunity to share that with others.

These trips are about far more than simply creating—they’re more about the process than the product. They allow students to work on important and essential skills, and the Apple store educators understand and embrace this. For some students, it’s about walking and navigating a mall/store safely. For others, it’s about seeking out a staff person and asking for help. Some students practice waiting skills, and others practice collaboration and cooperation skills. There are endless opportunities for skills practice and generalization.

With the support of everyone involved, and a fun and engaging project as the foundation, every student finds success, shares their voice, and leaves with a smile. Thanks to the Apple store, they also leave with a t-shirt and a USB bracelet with their project on it (or something similar), so they can share it with their families, their peers, and school staff. I have witnessed students hurry back into the school after a field trip, and immediately ask to share their work with others. The ability to see their products on the large screen is amazing, but pales in comparison to the look of pride on their faces. Then to see their educational team extend these lessons, sometimes through the entire year, is really something special.

For some pictures, samples, and smiles from this specific trip, please see the pinned post on my Educational Technology for All Learners Page. I would love if you join in this community with me and share your related stories and experiences as well.

I encourage you to reach out to your local Apple Store and learn more about what they offer for field trips and other group trips. The focus is on the individual; ensuring they have a memorable and meaningful learning experience. The impact the Apple store staff has on their community is great and often goes unnoticed. They are more than a retail store: They are educators and advocates with a passion to create positive change in the lives of those around them. One of the educational creative team members at Apple Crossgates recently reminded me of a memory she cherishes from our first trip to the store years ago. “The first year you brought students to the store when I was here, there was a young man who wrote an alphabet book in Keynote,” she shared. “At the end he said, ‘I wrote a book! I’m like Superman!’ It inspires me regularly and reminds me of how important your work is and Wildwood’s work is, as well as the small contributions we can make from this store.”

Let’s give all of our students and children the opportunity to share their voice with the world, in whatever way possible. Let’s keep creating, collaborating, communicating … and proudly smiling.

In the words of Steve Jobs: “What is Apple, after all? Apple is about people who think ‘outside the box,’ people who want to use computers to help them change the world, to help them create things that make a difference, and not just to get a job done.”

Not Your Typical Therapy Pets

Pygmy Goats4Pygmy Goats
Thanks to his mom, Alicia, 16-year-old Jackson Seaton is the happy owner of not just one, but two pygmy goats. Though they don’t live with him at his home, Jackson and Alicia visit the goats—named Jasper and Zephyr—often, at a farm in Folsom, California. Alicia got the goats after hearing other success stories about children with autism using therapy goats, and hoped they’d help Jackson out, too.

She bought them from Kathy Griffith of Griffith’s Pygmies in Meadow Vista. Kathy has two daughters with learning disabilities, and she’s happy to have been able to help out several families with autism. “Being able to give back to these kids, where others may not take the time to do so” she explains, “just means the world to me.” In addition to training some of the pygmies to be therapy goats, Kathy also breeds and shows them. The goats can be smarter than dogs, and research has shown that they’re entirely capable of building emotional relationships with humans.

Pygmy Goats2

Jackson cares for the two goats, not just feeding them, but also talking to them and learning to love them. His mom watches as Jackson reads to a goat; its head cradled in his lap. She considers it a success just to get him out of the house, off electronics, and into the fresh air, but also says that he’s becoming more vocal because of his interaction with the goats. Even his speech teacher has noticed the improvement, as Jackson tells her stories about the goats.

Jackson’s mom says the goats make him feel just like everybody else. “I love them,” he stated.

His Laughter Is Contagious

Justin Sellers, the photographer for Jackson, Mississippi’s Clarion Ledger, recently attempted to interview his younger brother, Jack, about a summer camp for children with autism spectrum disorders that Jack attends.

Center Ridge Outpost was built and is run by Together Enhancing Autism Awareness in Mississippi. The organization hosts both children and adults with autism, with the goal of giving them the quintessential camp experience of friendships and activities, and even a little independence. It also aims to improve campers’ social skills.

As Jack was explaining to his brother in the interview, “It has a zipline, and archery and you can have dinner and go swimming. And I made a lot of new friends.”

However, Center Ridge Outpost is relatively rural, and while Justin was interviewing Jack, cows started mooing. The result is pure gold: Jack in a fit of giggles.

To learn more about Center Ridge Outpost and see the entire video, click here.

The Moments That Take Our Breath Away

Parenting a child with autism is exhausting. It leaves parents with much bigger challenges than we ever thought we would have to endure in our parenting years.  It comes with heartache and I can tell you multiple stories on that subject alone. However, it also comes with pure joy. Yes, that’s right, I said joy! Now don’t get me wrong; I have had my days and nights where I have cried countless tears and guess what? Five years on this journey and I am still crying. I don’t cry every day, nor do I cry every week, but the heartache and tears are still there and they are not going away. It’s just part of the journey.

But, there is lots of joy on this rollercoaster ride. The joy that we experience is taken to a level that most parents of typical children know nothing about and that’s because of the heartache we experience before the joy.

As special needs parents, we know the heartache of watching our children live a life full of challenges–challenges that range anywhere from cognitive, physical, social impairment, and sensory processing challenges to speech impairments and much more. Nonetheless, we go throughout our day experiencing those challenges firsthand. We get so accustomed to those challenges that we don’t even realize the heartache we experience because of them, until the moment comes that takes all our sorrow and tears away.

It could be hearing your child say your name for the first time in months. It might be watching your child take his first steps after years of hard work. Honestly, it could even be watching your child enter a store without a meltdown for the first time. Those moments are the moments we live for as special needs parents. Those are the moments that take our breath away and make us appreciate the joys that come along with special needs parenting.

I am all too familiar with how easily the joy can be forgotten when the struggles take over. I know how frustrating it can be when you know your child can do something but his disability just simply won’t let him that day. I know! I understand! I walk that walk with your every single day. Nonetheless, let’s not forget how we feel in that moment when our child makes the tiniest milestone feels like the biggest accomplishment ever!

That heartache that you’ve been experiencing is not fun, to say the least. However, it makes that joyful moment feel that much better! It makes all the hours of therapy… all the sleepless nights… all the tears… all the heartache worth it. It humbles us. It softens our hearts. It makes us a better person.

If I can leave you with anything from this, it is to remember that there are others out there just like you. There are countless other families who cry those same tears every day. They, too, reach that same emotional peak when that small milestone is reached. If anyone understands that feeling, it is you and me. We are special needs parents. We take the good along with the bad and make the most of it. It is, after all, all that we can do.

My Deepest Hurt

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!”.

Things To Do in the Summer With Children With Autism

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.

Please Don’t Judge Us

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.”

‘Wow! My Autistic Child Is Socializing!’

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.”