When Autism Fidget Toys Become the Latest Craze

“Mum, it’s like everyone wants to be autistic like me now!” My 8-year-old daughter announced this as she came out of school on Monday. 

She was referring to the latest “craze” for the fidget spinner in her school (and it seems every other school in the country). Suddenly it was “cool” to want to fidget, and if you didn’t have the must-have fidget toy, you were somehow the odd one out.

It did somewhat amuse me to think that after an entire month of autism awareness, all it actually took to make autism “cool” was a little handheld plastic and metal spinner! 

Does having this fidget toy, which is marketed and made for those with autism and ADHD, become a huge international craze benefit those with autism or not?

It certainly seems to have made my daughter less stressed and self-conscious about her need to “stim” at school. Previously, it was rather obvious in her mainstream classroom which children had autism or ADHD, as they had access to special cushions, stress balls and tangle toys to help them concentrate or remain calm. While others were shouted at for fidgeting, a select few were allowed to “play” with these items at the teacher’s discretion. Having a fidget toy was something only children with a diagnosed condition were supposed to want or need.

Suddenly, all that has changed. 

While this has the advantage of making children with autism feel more included and less isolated, perhaps even “cool,” it has some negative effects, too.

How do you decide which children just want a fidget toy and which children really need it? Should schools allow all children the opportunity to fidget and “play” in order to enhance concentration and productivity, or are fidget toys actually a huge distraction in the classroom setting?

In the U.K. and the U.S., a large number of schools have now placed bans on the latest craze of fidget spinners, claiming they cause problems in the classroom and are a health and safety risk. This is not the first craze schools have banned, of course, but this is perhaps the first time such an overarching ban has actually had such a negative impact on autistic students. After all, the manufacturers never set out for the toy to be used so casually by so many people, and it was, in fact, designed as a stress release for the autism/ADHD market. 

My daughter would be devastated if her school introduced a similar ban. For her, the fidget spinner is not a must-have craze to be like her friends, but more a stress release from the demands placed upon her during her school day—much the same as she uses a stress ball or her twist-and-lock blocks. When schools decide to ban sensory and fidget toys, they risk isolating the very children they’ve spent years trying to include. 

I am loving seeing my daughter play together with children in her class with a toy she is confident in and comfortable with. It is rare for a craze to include her, as she is usually socially unaware of what others are doing. To see her included of her own doing is beautiful. I love that the world is now seeing sensory and fidget play as “normal” and not something to be mocked or frowned upon. I love that the current “in thing” is now readily available in shops everywhere and very inexpensive. It requires no language and little skill, so everyone can join in. 

But I worry too. I worry that schools are quick to react and ban everyone from using fidget spinners just because they are so popular. I worry that when everyone else moves on, my daughter will be the one left standing alone, still spinning her little handheld plastic spinner by the school gate and once again ignored by her peers. I worry that people will see her as just “playing” like everyone else and forget that, for some, these fidget items are a necessary stress release and stim. 

Time will tell how long this latest trend lasts. For now, though, I can see my daughter’s point. It really is like everyone suddenly wants to be autistic. I am watching with interest in the hope this has a positive impact for awareness and acceptance of not just my daughter, but the rest of the autistic population too. 

Parents Make a Mini Blockbuster Store for Their Autistic Son

Blockbuster declared bankruptcy back in 2010 and even though DISH Network bought the last stores in 2011, most of us just assumed that all Blockbuster stores were long gone. But it turns out that there are still a few in Alaska and Texas.

Unfortunately, the one in Sharyland, Texas, also just closed its doors, and its closure has gotten Twitter user Jaavii’s 20-year-old brother, Hector, upset. Jaavii posted on the social media site that his brother, who has autism, “was sad that Blockbuster was closing down.”

But Hector didn’t have to be sad for long, as his parents built him his own “mini Blockbuster,” stocked with his favorite movies and cartoons. They even got a DVD rack topped with Blockbuster signs that they’d bought from the store when it closed.

While Hector is non-verbal, Jaavii’s photos show that his brother was happy and clapping with joy. Our hats off to these enterprising—and ausome—parents.

Let Me Shine: A Video

What do you get when you combine the talented, autistic teenagers living at Prior’s Court in Hermitage, Berkshire, U.K., the band Low Island, and a very catchy song? You get goodness. Pure goodness.

Low Island’s drummer, Tomson Chauke, works at Prior’s Court and wanted to showcase the wonderful relationship between the staff and residents, most of whom are non-verbal and spent months learning the song’s lyrics.

Tomson explained, “It started with a member of staff being inspired by the engagement and enjoyment that our young people, who are severely challenged by their autism, have with music…. We are proud of the song and the way in which it celebrates the uniqueness of our young people and how, when given the chance, they shine.”

Turn it up. Way up.

When the Weight of the Unknown Is Crushing You

There was a time before our son’s autism diagnosis when I felt completely lost. Everything we had brought up to the pediatrician had been disregarded. He was significantly behind in speech at 15 months old. He wouldn’t pick up food or even hold his own bottle or sippy cup at one year old, and his meltdowns from sensory issues and transitions were occurring hourly. He just seemed miserable all of the time. We thought maybe severe allergies were bothering him, but everything came back negative. We took him to the dentist because he was constantly chewing on everything, but that all looked normal. I finally sat down one night and took the MCHAT (the autism screening tool) online and realized that even though he made eye contact, he had pretty much every other red flag.

So, at three years old, he was evaluated by the school district and then by a medical team. Both teams came back with a severely autistic diagnosis. And I felt relief to finally know. And I felt bad that I felt relief. But I was glad to finally have an answer and hopefully a way forward to help him.

However, after they finally answered that unknown, it only opened up the door to many more unknowns. The more I read on the subject, the foggier I was on everything from treatment to which resources to trust.

I remember being told at his kindergarten IEP meeting that in a couple years we would have to make the choice between a diploma track or a certificate of completion track. How am I supposed to make that decision in third grade? How do I know if he will have the attention span to take the required yearly state tests? Will they accommodate him? With his behaviors currently so sporadic from one week to the next is mainstreaming him at any point a total pipe dream? Will he be one of those autistic children who responds so well to interventions that we should have chosen the normal diploma track?

At that same meeting, we were handed a pamphlet about getting on a waitlist now (in kindergarten) if we think he would need Medicaid services or housing after he gets out of school. Oh, that one stung. When we are looking at our savings and our options, we do not know if we should be setting aside a college fund or funds to put him in a home. We do not know if we should put anything in his name, as it could disqualify him from getting disability when he ages out of the education system. Will he need disability? I suspect so, but I hope not. What will happen to him when I’m gone? Will his siblings take care of him? Is it right to even ask that of them? I just don’t know, and it weighs heavily on my heart and mind.

When we look at the therapies and the educational setting that is helping him so much right now, we don’t know how long it will last. Will they pull services out from under him if he progresses too much or too little? Will the government cut funding to services that help him and others like him? Will our insurance continue to cover the therapies he is getting, or will accessing those services get harder and harder? Will his new school district be able to offer him an appropriate education next year? I’m not sure of any of that, and I think most of us autism parents are holding our breath expecting the other shoe to drop.

He is currently on a medication regimen that is working for him. Do the benefits outweigh the long-term side effects? I hope so, but I don’t really know. Will this medication work for him for awhile or, as his body changes and he grows, will we be back to square one? It’s another unknown and another issue we know we could be facing just around the corner.

I feel like all of the unknowns run on a constant cycle in my head. The anxiety over the unknown can sometimes feel like an unbearable weight that I have no choice but to bear. The best thing I can do as his mom is to focus on the now and hope the answers to unknowns reveal themselves in time. Until then, I’ll hope for the best, prepare for the worst and love him with all I’ve got.

How I Transition My Son Back to School After Holidays

As a mum of seven, I have many years of experience with the back-to-school thing. New shoes, earlier bedtime and alarm call, packed lunches and hunting down the PE kit. But that was before we had a child diagnosed with ASD.

Towards the end of term, my boy was getting more and more distressed with every day of school. I was having to become more and more imaginative with ways to coax him off the floor, to eat and get ready for school, to get out of the door, along the road, into the playground and finally into the classroom.

It was exhausting and upsetting even without the scornful/pitying/bewildered looks from other parents.

I am lucky in that I get a good level of support from my son’s school, but even so I breathed a sigh of relief when the Easter holidays finally arrived and I could take a day off from that particular nightmare.

I wondered if the lack of school routine would prove difficult, but once I had decided that on the whole, dressing in day clothes could be optional, he soon settled into his own routine. It made it much easier for him to tolerate any plans we had as a family.

The end of the holidays were looming – they are always over far too soon. I realised to make transition easier for him, I was going to have to start preparing him to go back to school.

We started in the same way we prepare our neurotypical children: Being more aware of the bedtime routine, bringing meals back to more “school hours” friendly times. Sorting out uniform, shoes and PE kits. (I swear someone steals them and hides them during the holidays!)

I decided it might be good to talk about what was going to happen with my boy – he likes to know what the plan is.

Firstly though, I talked about what we had done through the holidays. We chatted about what he had enjoyed most and why. He was relaxed and happy remembering all the fun he had had. Then I suggested he could tell his classmates and teacher about his favourite thing – we talked about how he could bring it up and what he might say. We discussed taking a shell he found at the beach in to show people.

He will spend all of his time alone if left to his own devices, so I thought this was a good way of giving him tools for the cloakroom/playground socialisation he often struggles with.

I allowed him to choose his favourite underwear for the following day at school, and put his favourite comfort foods in his lunchbox – OK, so it was a bit beige, but I knew he would eat it and be happy to see his faves in there rather than be challenged by unfamiliar or less-tolerated foods.

I talked to him about what he might do during the school day. I then chatted about what he might like to do after the school day had ended, which he enjoyed.

When it came to crunch time, he still fell to the floor and went into his panic mode so, yes, I confess, I bribed motivated him. I showed him three tiny chocolate mini-eggs and promised if he walked nicely to school with me, he could eat them in the playground. I promised my neurotypical daughter she could have some when she got home – luckily, she’s very understanding of her brother’s different needs.

This did the trick and he went into the classroom with no further stress.

The next day, he was more settled. Although he was initially reluctant to leave the house, he responded to our more usual chocolate-free motivational efforts – timing, playing verbal and spotting games, and planning future events that he loves to do.

I am lucky – my boy is verbal and bright, but still the school run can descend rapidly into an emotional car crash without planning and careful management. I’m always looking for new ways to make life easier, for him and for the rest of us at that busy time of day.

Julia, Sesame Street’s New Autistic Character, to Appear at Sesame Place

The newly introduced — and already beloved — Sesame Street character, Julia, will make her debut “live” appearance this Saturday, April 22, at Sesame Place in Langhorne, Pennsylvania.

Sesame Place holds their “Autism Awareness” Day event annually, in partnership with Variety, a local charity for children with special needs. As an autism-friendly event, the park will make adjustments to its usual operations, including low-sensory character shows, designated quiet areas and adjustments to noise levels. Julia will be walking around the park, welcoming attendees.

The event runs from 11 a.m. to 5 p.m. and is free for members of Variety. Parking is $25. Check out this link for more information.

Sesame Place officially opens for the season on April 27.

To the Mother at the Swimming Pool With Her Autistic Daughter

I didn’t notice you when I first arrived at the local aquatic centre. Amongst the usual commotion of scuttling children and bustling parents, I was too distracted by my two excited little boys, each racing off in different directions.

Although I’m at the pool every Wednesday afternoon, taking my sons to their swimming lessons, today was the first time I’d seen you there. You and your remarkable daughter.

I was sitting alongside the pool, attentively watching my eldest boy at one end practising his freestyle stroke, and my youngest at the other end blowing bubbles under the water. You probably didn’t notice me, lined up with all the other mothers.

But I noticed you.

You were nearby, in the warm-water therapy pool with her. With your intriguing daughter, who was looking only at you, but not really seeing you. With your beautiful daughter, who was severely autistic, and in another world. But that’s not what made you stand out to me.

The brightly dressed lifeguards were busy patrolling the lap pools, and the lesson pools, and the free-play pools, and the wading pools. Kids of all ages and sizes. Parents of all ages and sizes. The lifeguards didn’t bother you. They didn’t attend the therapy pool. Amidst the chaos, you and your daughter had all the time, all the space, and all the calm you came for. But that’s not what made you stand out to me.

Your daughter’s intense face was framed by a short and flattering hairstyle. I wondered how bearable it had been for her to sit still in the hairdresser’s chair. I wondered how well she had tolerated the hairdresser’s touch. And I wondered if she recognised the effort you put into her appearance. But that’s not what made you stand out to me.

You held her and moved her, letting the water soothe her senses. Your intimate connection, born from years of close care, was obvious even without your touch. But you looked tired. And you looked worn. Even as a mother myself, I knew I could never comprehend your tiredness. Nor your life. But that’s not what made you stand out to me.

What made you stand out to me, and what I admired more than anything else, was your strength.

Because not only were you a mother at the pool with your autistic daughter, but your daughter was in her forties, and you in your seventies.

Your life as a parent has been so different from most. Your journey as a mother unrecognisable to most. How many tears have you cried for the sake of your daughter? And how many dreams have you put aside?

Although it may not be the motherhood that you would have chosen, it’s a motherhood that you have courageously embraced.

Time drew in and you gently helped your daughter out of the pool, just as I did with my boys after their lessons. Your daughter became distressed when being led towards the rinsing showers, and it took you a long time to coax her under the spray, while my boys dashed in and out of their own showers in childish delight. And you eventually urged your daughter quietly into the changing rooms, as we noisily made our way into ours.

In the car park, I passed you once more, tenderly leading your daughter towards the car. While I silently applauded your patience and grace, my boys whooped their way over to the nearby playground. By the time I dragged them away from the swings, you had finally settled your daughter into the backseat.

And then, as you buckled your adult daughter into her seat and I buckled my young sons into theirs, it was obvious that we were mothers side by side, but worlds apart.

We drove our separate ways, but you still filled my mind. What does home hold for you? What does tomorrow hold for you?

Your daughter may never be able to appreciate how much you do for her. And how much you care. She may never know how truly lucky she is to have a mother like you.

But I want you to know that I do.


This post originally appeared here.

Waiting Is the Worst

I try and be patient, really I do. However, I find myself waiting by the phone, or the letterbox, or refreshing my email account every time there are results due, or a decision to be made.

Waiting is the worst.

For the 7.5 short years that my gorgeous daughter has been in this world, I have been waiting, and do you know what? I don’t even know what for.

We have lots of answers, lots of diagnoses that we just seem to be gaining at every appointment. Like a collector managing to find all but that one most rare figure that they need to finish the collection, we are waiting for that one diagnosis that will finally bring all of those little ones together, pulling them all in and tying them all up neatly. That last figure on the shelf making the collection complete.

Except it won’t help, will it? Once that collection is finished, there will more than likely be another collection to collect. Another diagnosis that doesn’t make sense, more appointments, more letters, and more waiting.

Waiting is the worst.

I thought that my daughter’s diagnosis of autism was the last piece for us – the final piece in the collection. We had to fight, we had to plead, and we had to push. She masks her symptoms of autism, you see; she conforms to a society that doesn’t quite understand her. She holds it all in and she releases when she’s home. Her safe place – her haven.

It turns out that her Autism diagnosis was just the end of the beginning. We still needed to collect the extras, and are still hunting for the rare. Researching symptoms that point us to the middle of nowhere, several directions to take and lots of dead ends, waiting on further directions, extra referrals.

Waiting. Waiting is the worst.

As I sit here – waiting for my rare collector’s item, I can’t help but wonder how many more of us are in this situation? How many more parents are out there that thought an Autism diagnosis would be the end, only to find out it was just the beginning?

Waiting, watching, researching, wondering, consumed by thoughts that lead nowhere certain. Just a list in your head of points to remember to mention at that next appointment. Another collection, more waiting.

Waiting is the worst.

Four Things My Severely Autistic Son Has Taught Me

Having a baby is the most wonderful, humbling, exhausting experience I have ever known. I thought it would be a challenge, but that I would also learn and gain so much.

Then one day my baby was diagnosed with severe autism. Everything I had ever known about parenting suddenly changed.

I went from being the teacher to becoming the student; despite my son having no ability to speak, he has taught me more than any speaker, any book or any course ever could.

Here are four things my severely autistic son has taught me about life:

1. If you enjoy something, repeat it

All too often in life we are told to “move on” or “grow up” or “you are too young for that!” My son has no concept of age appropriateness nor is he affected in any way by peer pressure. He enjoys a ride on a train to the same station to see the same elevators over and over again. He watches the same videos on YouTube over and over. He presses the same button on the same toy repeatedly and still laughs.

Isaac has taught me that if something fills your heart with joy, never be ashamed to relive that. Life is to be enjoyed over and over and over again. I need to go back to finding joy, just like him, in the simplicity of life repeated over and over again.

2. Stop worrying about other people

Isaac has no awareness of others. He is not afraid to get on a slide, even if a group of older children are in his way. He is not afraid to flap, spin, laugh and clap, even if others don’t join him. Bullying goes right over his head. Comments from others don’t affect him. He could not care what he is wearing, where others are going or whether he is included or not. He does not aspire to be politically correct nor does he want to lead the crowd.

He is blissfully content being who he is exactly and how he wants to be.

I want to be more like that. Life is not about doing what everyone else is or pleasing others. He is different and happy to be so, and there is a lesson there for all of us.

3. There are other ways to communicate without using words

I talk far too much. Many of us do. Isaac cannot talk at all ,so he relies on other, much more basic ways to communicate. He sits beside me if he wants a hug, screams if he is unhappy or scared, takes my hand to lead me, and finds photographs of things he wants.

To most people, his communication is too basic, too rudimentary to learn anything from. They are wrong. Speech is not a “higher” level of communication, but rather a way to communicate that is actually too easily misunderstood. We can say we are happy, yet our body language says otherwise. We can say we love when we actually don’t.

My son simply shows me in beautiful and simple ways. They say actions speak louder than words — perhaps we all rely way too much on spoken and written language when a simple hug or smile would convey much more.

4. Don’t worry about the future, just enjoy today

Isaac has no concept of “future.” He lives in the here and now and, at 8, is just about coping with the basic idea of “first and then.” He has no worry about politics, or religion or current affairs. He has no concerto of wars, shootings or terrorism. He lives in the moment. He eats food and enjoys every item with no consideration for cost or sell-by dates. He is as content to eat an out-of-shape vegetable from a low-cost supermarket as he is to eat out in an expensive restaurant. As long as he gets to eat, he does not care.

He never stresses about money or where it will come from, and neither does he desire anything of any real value. He will play with a coat hanger, flapping it for hours, without any idea that most people would view it as trash. While we may not be quite as able to “live for the moment” as he is, we certainly could learn from his carefree lifestyle and worry much more about today than the future.

“First today, then tomorrow” could be a motto for us all.

Isaac will most likely never read, or write or live on his own. Does he care? Not an ounce. He has zero idea about toilet training and he is not in any way worried what anyone thinks about that. He wakes up every morning happy. He laughs at the same YouTube clip that he laughed at yesterday, and the day before, and the day before that too.

Life is simple. Life is fun. Life is about today. He dances to his own beat and I am proud of him. He brings me delight every day. He has so much to teach us. He may be severely autistic and non-verbal, but the world is a better place for having him in it.

People tell me he needs to be more like us. I disagree. We need to be much more like him.

Speechless with Carly Fleischmann and James Van Der Beek

Carly Fleischmann recently videotaped and posted Episode 2 of her successful “Speechless w/Carly Fleischmann” show, the first “non-verbal” talk show.

Episode 1 of Carly’s show — a fantastic and fun interview with Channing Tatum — received 3.8 million views. That success made digital media and YouTube experts, Fine Brothers Entertainment (FBE), take notice.

FBE partnered with Carly and the Canadian Broadcasting Corporation (CBC) in order to produce more episodes of “Speechless,” and release them monthly on Carly’s YouTube channel. FBE will help market them via YouTube to give Carly even more exposure.

This latest episode features an interview with James Van Der Beek.

We adore Carly’s exuberant, and teasingly pointed, nature. And we congratulate her on her partnership with FBE and CBC, which will allow her to keep doing what she’s doing. Being Carly. We love it.