Life With Autism: Richard Mylan & His Son, Jaco

Welch actor, Richard Mylan, talks about raising his autistic son, Jaco, in a recent BBC documentary.

They’ve both come a long way since Jaco’s diagnosis. Richard, who didn’t want to talk about it at first then found that when he did talk about it, nobody really understood. People thought he was in denial, and even deluded, about his expectations for Jaco. But Richard believes you can’t put a limit on a child, and especially a child with special needs.

And he’s learned to just let Jaco be, to talk if he wants to talk, to just exist quietly if he doesn’t want to talk. “All I needed to do was work out what life on his terms was, and live it with him.” Watch below.

She Has Non-Verbal Autism, But Her New Friend Understands Her Just Fine

If you have a non-verbal child, chances are you know how hard it is for them to make friends. That’s why we know you’ll love this video.

The mother of Carly Jade, a 6th grader with non-verbal autism, took the video at a local Chuck E. Cheese after she saw the way that Carly Jade interacted with her new friend, Zoe. Zoe is neurotypical, but seems to have figured Carly Jade out. As Shannon, Carly Jade’s mom, explained in her Facebook post:

Our daughter Carly Jade, is in sixth grade and is nonverbal, but like every little girl her age, she wants friends and to be accepted, but because of her special needs, she’s often overlooked… Carly may not be able to speak her mind but she definitely shows her feelings with gestures and sounds, she also hears and understands what is said around her..

So when we learned of a classmate, named Zoe, who took Carly under her wings, we were more than overjoyed!

We share this video to show everyone just how important it is to treat everyone equal… and how it captures what words cannot describe.

We’ll let this wonderful video speak for itself:

Our daughter Carly Jade, is in sixth grade and is nonverbal, but like every little girl her age, she wants friends and to be accepted, but because of her special needs, she's often overlooked… Carly may not be able to speak her mind but she definitely shows her feelings with gestures and sounds, she also hears and understands what is said around her.. So when we learned of a classmate, named Zoe, who took Carly under her wings, we were more than overjoyed! We share this video to show everyone just how important it is to treat everyone equal… and how it captures what words cannot describe.

Posted by Shannon Sommers on Tuesday, May 23, 2017

5 Ways Being an Autism Dad Has Changed Me

Most guys have a vision of what life will be like when we become a Dad.  We think about teaching our sons sports, helping them with homework, talking to them about girls, and then one day sending them off to college. I remember when I used to look forward to the day I could teach my son to play baseball and take him to games with me.

When autism enters your life, it changes everything. Autism doesn’t simply change the way you parent. It changes you as a person.  Here are five ways being an Autism Dad has fundamentally changed me.

The Not-So-Good Changes

1. I Now Hate Little League
I don’t just hate little league. I hate all kids’ sports. Rather, I hate attending kids’ games. It just makes me very sad. I’m reminded of what will never be for my oldest son, and the things I will not be able to experience with him. He has pretty severe autism, so even things like Miracle League or Special Olympics are out. We tried Miracle League basketball and soccer years ago, but he just ran around, spit at his buddy, and eventually bit his buddy too. I gave up on sports, as it was just too painful for me. The saddest part about it is that he would be so great at it. You can tell he would make a great athlete if autism didn’t rob him of the attention and focus needed for sports.

2. I Can No Longer Relate to Other Dads

One of the hardest things about being an Autism Dad is the isolation. It is tough to meet new people and become friends with other dads. I simply can’t relate to them. I am a stay-at-home dad with three kids, one of whom has severe autism. Most guys like to brag about their kid’s accomplishments or discuss what’s going on at work.  I just can’t build a meaningful connection with other guys now, as we just don’t have much in common. I wrote a whole piece on the loneliness and isolation that comes with being an Autism Dad.

The Good Changes

3. I Am Smaller as an Autism Dad

I don’t mean that metaphorically. I am substantially smaller today, 11 years after autism, than I was when my son was born. As I noticed how different foods affected my son’s behavior, I began to research and learn how food influences all of us. A few years ago, the whole family adopted the paleo diet. I personally lost nearly 100 pounds and continue to maintain that weight loss. If autism never entered my life, I don’t know that I would have gotten the kick in the pants I needed to stop my poor eating habits. I just shared my before and after paleo pictures on my blog if you want to see how dramatic this change has been.

4. I’m a Better Person as an Autism Dad: Patient, Kind, Accepting

I’ve always had confidence in my ability to be a good Dad, but autism has really tested that confidence. It’s shown me patience I never knew I had. Sometimes, it pushed hard and kept pushing until I broke. I’ve exceeded my breaking point many times in the past decade. However, autism has also taught me that it’s OK to fall sometimes, so long as I pull myself back up. It’s built in me an incredible resilience and shown me things I never thought I was capable of.

Autism showed me not to be so quick to judge. You never know what is happening with other people or the situation they are facing. Now, I try to be kind to others even in the face of rudeness.

Similarly, I’ve also learned to be more accepting. Not just of other people, but of autism in general. Through all the bedtime “poopisodes,” all the wet pants, and all the screaming, I accept my son for who he is. I love him so much that words can’t even express it.

While I’ve learned to accept his autism, that doesn’t mean I’ve stopped pushing him to be better. Despite his severe autism, he’s just as capable of improvement. Like all dads, it’s my job as his Dad to push him so that he becomes the best version of himself that he can possibly be, autism or not.

5. I Recognize a True Connection

My son, Ethan, is almost 11 years old, and he has never said the words “I love you, Dad.” That doesn’t mean he’s never said I love you to me. He says it when he looks at me with his glowing eyes and beaming smile. He tells me how much he loves me when he runs to me and says, “Daddy run.” Ethan shows me he loves me when he flops on my lap as I sit on the couch, and when he leans his forehead to mine and says “mwuah” (his way of giving a kiss). Being an Autism Dad has shown me what it’s like to truly be connected to someone with no words required.

Connected Without Words

When times are hard, I always think of this one specific time where Ethan showed me just how much he loves me. It was last fall. My wife and I had gone to the Autism Education Summit in Dallas, and we were gone for about four days. It was late when we arrived back home. The kids were already in bed.

I woke up the next morning, and walked to the living room. Ethan’s back was to me as he was watching his favorite YouTube clip on TV. I remember this so vividly. I said, “Ethan,” and then I waited for him to respond. He turned around and looked at me. He gave me the biggest, brightest smile you could possibly imagine. Then, he ran over, giggling, and jumped into my arms. Laying his head on my shoulder, he wrapped his arms around me and squeezed me tight. It was the first real, spontaneous hug I ever received from him. All the while, we both had huge smiles on our faces.

It’s one of the single best moments I’ve ever had.

 

Looking Back Now Is Easier Than Looking Forward Was Then

It was strange, thinking back, how the course of our daughter’s life changed in a moment. A moment that took place in a portacabin, painted with cheery cartoon images, but a portacabin nonetheless.

“Your daughter has a diagnosis of autism.” It wasn’t unexpected, but the tears still flowed as a bundle of leaflets were passed to us, together with a box of tissues.

Our daughter didn’t notice the diagnosis or the tears. She carried on lining up her toys, her little toys in the small bag she carried everywhere for security. Under her arm was her bunny, who went everywhere with us—a comforter.

We knew that we’d be receiving a diagnosis at the meeting, but hearing the word “autism” spoken still cut into our hearts. The feeling that her life would now be defined by a “label”; one that was necessary to enable support to be granted at school.

Telling family members provoked different reactions. One didn’t mention autism by name, but sent us a note referring to our daughter’s “problems.” Another said, “Well, there’s never been anything like that on our side of the family.” I did wonder if they felt that sense of grieving for the child we wouldn’t have, coupled with an immense sense of fear for our daughter’s future.

In the weeks that followed, I found it hard to talk about it without crying.  I guess the masses of emotions rushing around in my head had to find a way out and they did, through tears. I found myself imagining the events we probably wouldn’t see for D, like a wedding, children, a life partner. It was quite ridiculous, really, as it only served to upset me more.

I was a child-minder at the time and couldn’t help but compare the children happily playing in the garden to our daughter, who would put toys and/or books into a pile in the centre of the room and walk around them with a totally blank expression. She didn’t respond to prompts or offers of a cuddle. She was totally in her own zone.

I don’t know exactly when my mindset changed to a “can do” approach. I think it was around the time that D very hesitantly traced the letters of her name on a piece of paper sent home from school. That produced happy, proud tears on my part. Way behind the other children in her class, D could count to 50 by age 3 but had very stilted speech. Reading phonetically wasn’t happening and the (mainstream) teachers just seemed exasperated by her meltdowns, her unwillingness to enter a noisy/busy classroom, and her reluctance to join in. They described D as “flighty,” which hurt. D’s TA was fantastic though, understanding that D needed a “softly, softly, get down to her level” approach.

It took a while to get a Statement of Special Educational Needs for D. The first one was rejected and the second granted—it took about a year in total. It added so much stress to our lives, wondering why the “powers that be” were treating our child solely as a budget figure and not the individual that she was (and still is). We realised by then that mainstream education didn’t suit D and there wasn’t a chance of a SN school without a statement. The pressure felt immense and, all the while, we could see just how much D was struggling in the mainstream environment. It wasn’t for her.

It was a difficult decision to make for our then five-year-old daughter: Do we stick with mainstream education with exams at the end of her schooling? Or opt for the SN school, which didn’t offer exams but instead focussed on life skills and social skills and offered a smaller class size and higher staff ratio?

There was no contest really, we chose the environment we felt would make D happy and where she could fulfill her potential—the SN environment. From that very first afternoon and D’s smile as she rushed towards me, we knew we’d made the right choice.

Eight years on, we know we made the right decision. Our daughter is now a teenager and we know she wouldn’t have fit into the secondary school environment. She’s never going to be an academic, preferring crafts, music and low-contact sports. She’s happy, and we’re happy. And that’s everything.

We Are All Different, Not Less

Most people, including me, seem to be primed to recognise faces in inanimate objects. I know that I instinctively add a layer of social story to the things and events I observe.

I find myself constantly making up imagined and complicated backstories for my fellow commuters when I’m travelling to and from work.

In order to keep the kids amused, my husband and I used to really go to town with backstories about other families in neighbouring cars when we were in traffic jams on long road trips. I suspect our children may actually believe that we were once in a ferry queue next to the handsome and extremely wealthy Prince Razis, who had decided to try out life as a “normo” by hiring a VW van for a week’s camping holiday in Northern Ireland with his young bride and baby daughter. The chap was more likely a software engineer from Telford, but our version of him was definitely more entertaining. Other families do this too, right?

A few years ago, my autistic son, Edward, and I sat down and watched a Horizon Documentary presented by one of the UK’s leading experts in Autism, Uta Frith. If my memory serves me well, at one point in the documentary an experiment was shown where both autistic and non-autistic adults watched a very short animation involving a large triangle, a small triangle and a rectangle. The shapes moved in relation to each other and viewers were asked to describe the story being depicted.

I can’t access the Horizon episode now but I think the animation shown was similar to, but probably not the same as, the one devised in 1944 by Heider & Simmel, two research psychologists. The Heider & Simmel animation is available on YouTube here.

I wonder what story you see when you watch it? (If you plan to watch it, do so now before you read any further. It’ll take less than 2 minutes, but if you haven’t got time please read on.)

Uta explained that people on the autistic spectrum were more likely to stick to descriptions of how the shapes physically moved in relation to one another when asked to describe what was happening in the film clip. “The large triangle moves to the top right of the rectangle whilst the circle moves backwards and forwards inside the bottom third of the rectangle,” etc.

Non-autistic people were more likely to attach roles and meanings to the animation, with shapes becoming personified. A story involving humanistic interactions would usually be forthcoming.

At this point, I remember turning to Edward and saying something like, “It’s a story about a mum who wants her kid to stop playing outside with their naughty friend. The kid wants to stay outside and so the mum ends up shooing him in through the door. The kid escapes and runs off with the naughty friend and the mum is furious about it.”

Edward looked at me as if I was saying the most ridiculous thing in the world. I think he even said, “Where did you get that idea from? it’s just some moving shapes!”

Uta then told viewers that because people are primed to see social behaviour and purpose even in the movement of geometric shapes, most people would have clearly seen a mother and child having a disagreement about where the child should play.

Edward turned to me, dumbfounded.

He honestly looked at me as if I was a living genius.

It’s the only time in my life when I remember him holding me with that regard. He was completely in awe of my ability to make sense of something that made absolutely no sense to him whatsoever.

It was quite nice to have the tables turned.

You see, Edward has a brilliant memory and can understand, store and retrieve all sorts of complex pieces of information. I don’t even come close to matching Edward in these skills.

As a young child, Edward would repeatedly ask me, “Tell me something that I don’t already know.” I soon ran out of things to tell him that he was interested in learning about. At one point I even ended up teaching him phonetics, which I’d studied at university, and for a while afterwards I’d hear him making weird vocal sounds from his bedroom in much the same way as I had done whilst trying to learn the subject as an undergraduate.

One day, despairing of my inability to divulge any new information, he asked me, “Mum, would you say you were of average or below average intelligence?” He wasn’t being intentionally rude; he simply couldn’t believe how limited my ability to recall factual information was.

When I told him I was probably of above average intelligence, he looked genuinely shocked and surprised, and then I think he then moved swiftly into a position of worry about the state of humankind.

You’ll therefore appreciate just how wonderful it was for me to bask in the temporary glory of being viewed as a genius by my own son.

The world needs humans who are diverse, who think different thoughts and who have different skills to offer. After all, human progress would come to an abrupt stop if we were all the same.

It can so often be the case that our autistic children are pathologised and everyone involved becomes overly focused on the things that they find difficult. It is, of course, important to try to help our children develop new social skills and learn compensatory strategies for the things they find challenging, but it damages them if this intervention and attention is delivered at the expense of failing to fully recognise, celebrate and nurture them and their strengths.

My son couldn’t tell you a convincing social story based on watching some moving geometric shapes. Unlike my son, I couldn’t tell you about all the candidates who stood in the recent French election or about all the latest developments in green technology.

We are all different, not less.

The original version of this article first appeared here.

When Living With Your Autistic Child Becomes ‘Unsustainable’

I went with my daughter to see a mental health advisor. Her anxiety is out of control, her sleeping is poor and her eating almost non-existent. It is obvious my daughter is struggling and is on the cusp of being diagnosed with a mental health condition. The more my daughter talks and the more the advisor hears about home life, the more she shakes her head.

“This cannot continue,” she says with a sigh. “This level of anxiety is unsustainable.”

“Until the root cause of the difficulties is addressed,” she says looking right at me, “your daughter is never going to get well.”

“You already seem to know this. Will you help your daughter?”

She is asking me to put one child above another.

My son with severe autism is destroying his sister mentally and keeping them together is now “unsustainable.”

I had a long chat with the social worker. The hours of screaming, the self harming, the level of control that rules the entire house: it is killing my family. The smearing, the lack of sleep, the isolation: it is destroying my marriage. The violence and anger is damaging both physically and mentally to us all.

She gives me a stark choice: either one child will end up in a mental hospital or the other will need residential care.

Continuing as we are is not an option.

Then there are the parents. Both already on antidepressants, both exhausted and drained and barely functioning.

Love is not the question here: living is.

What do you do when caring for your autistic child becomes “unsustainable” for the rest of the family?

What if his unrelenting need for sameness means others are denied change too? What if his lack of sleep is physically exhausting everybody else? What if his meltdowns are so severe they are putting others at risk? What if his care needs mean siblings are denied having friends over and can never be part of the community they live in? What if his rigidity is so severe that nobody can have a haircut or even a new pair of glasses? What sort of effect does that have on a family?

Is love enough when damage is being done daily to everyone, both mentally and physically, by keeping the child with autism at home with his family?

He is my child, my heartbeat, my every breath, my all.

I can’t let go of him, but I am not sure I should keep him either.

This is not bad parenting; this is life with severe autism. 

I am doing my best with insufficient support. So many families are in the same place.

Love is not the question, living is.

Can I actually admit to myself that living with my own autistic son is “unsustainable”?

The Autism-Friendly Products We REALLY Want

When your child has autism and disabilities, you start to notice as they get older that some products you’d like to buy just aren’t easy to get hold of — or available at all. And, if they are, you can guarantee that there will be a disability price tag attached to it! You know that one where they multiply the normal price by ten, adding lots of extra zeros?

My friend and I often joke that if we were entrepreneurial enough, we’d set up a store for the disabled community with an array of products at affordable prices. Someone is missing a trick! There are so many products not on store shelves that I know would sell! And why are we so often ripped off?

So businesses, if you ever feel like listening, here are just some of the things parents would like to be easily available to buy…

Bigger Nappies and Swimming Nappies

In the U.K., we are lucky to have the NHS continence service, but not everyone is entitled to free nappies and not everyone gets the amount that they need. There are bigger nappies available online, but they tend to come with the disability price tag and with fewer in a pack than standard-sized nappies. It would be great to be able to buy bigger sizes at a reasonable price in supermarkets. I actually started a petition about this in the U.K. last year, so watch this space!

Similarly, we have the same issue with swimming nappies. I’ve just bought my 5 year-old son, Brody, one online that is washable, but in the U.K. it’s very hard to buy disposable swimming nappies for older children and adults.

Bigger Ride-On Toys

Brody learnt to use a ride-on toy when he was nearly 4 years old. He is tall and now, sadly, too big for them all. He is unable to use pedals. I contacted Little Tikes last year to ask if they would consider making a bigger Cosy Coupe because it breaks my heart when Brody tries to climb into his younger sister’s. And I know I’m not alone. I have seen lots of people online with the same predicament so many times.

Little Tikes response was that there wasn’t a big enough market for it. Hmmm… I beg to differ!

Bigger Push-Along Toys

Bigger push-along toys, like buggies, for children who are late to walk or just like to push toys along would be great. My son was a late walker and needed support for a long time. These days he loves push-along toys, like his toy lawnmower and buggy, but they are fast becoming too small for him.

Cartoon Character Clothing

Character clothing tends to stop at a certain age. The age when a neurotypical child is no longer interested in having “Bing Bunny” or “Peppa Pig” on a T-shirt. It’s sad for parents who can’t buy their child a T-shirt with their favourite character on it because they are typically “too old” for it. Someone please make them in bigger sizes!

Whilst we’re at it, can we make the head holes in T-shirts a little bit bigger for children who have slightly bigger heads, like my son?

Trouser Pants with Nappy Space

Yes, I’m back to nappies again! There are a limited number of stores where I can now buy Brody trousers because a lot of trousers for children his age have less room around the bum and not enough space for a nappy. They also have really skinny legs on them.

We need trousers — jeans, joggers, cargo pants, shorts and pyjama bottoms — with higher and elasticated waists. I’m lucky there are a few stores I can rely on at the moment. But I know this will get harder as he gets older. Then I’ll have to refer to a catalogue with no doubt overpriced trousers and a disability price tag. Sigh!

Trouser Pants with Reinforced Knees

If your child falls over a lot like mine, you’ll get through trousers very quickly. Is there such thing as trousers with reinforced knees? If not, please can some entrepreneurial genius design and sell some for our kids?!

Sensory-Friendly Clothes

A friend of mine struggles to find her 12 year-old daughter short-sleeved jersey dresses with no buttons, textures or other embellishments. As seam-free and decoration-free as possible, please!

Can we add seam-free socks to this list?

Bigger All-in-One Pyjamas with Feet

Is it just me or do these seem to stop being available at around 4 years of age? We struggle with bedtime wear. A lot. Brody won’t keep a duvet on him and it’s hard to guess whether he is too hot or too cold (he is unable to tell us). Fleecy all-in-one suits with feet on have been brilliant in the past, but we now can’t find any in his size.

Safe Beds

Brody is fortunate enough to have a travel bed currently on loan from a charity. It has high material walls that are soft and is low to the ground. This means that when he bangs his head, which he frequently does, he doesn’t hurt himself. You can also zip the side of the bed up if you like so that he is asleep in a safe space. Brody has epilepsy, as well as autism, so a safe bed is essential.

The bed is fantastic, but it costs more than £4000. I’ve seen other safety sleeper beds advertised online for similar prices. The cost is ridiculous! I don’t know how they even begin to justify it.

You can add specialist seating here too! My friend’s son, who has complex disabilities, has a bean bag with effectively a Velcro strap attached to it. It cost £600. It’s not hard to make, so why the high price?

Specialist Shoes

If your child needs specialist shoes, you know that these come at a price. Thank God for the NHS in the U.K.. Brody’s piedro boots cost around £120.

If your child has an AFO or splint, you’ll know finding shoes that they fit into is a total pain!

There’s a gap in the market here!

Bigger Strollers

Someone please design a bigger stroller that you can buy in stores that doesn’t have that disability price tag. I promise people will buy it. Do it now, please!

Bigger Car Seats

Again — come on! Why does a seat that looks identical to the typical, slightly smaller version cost so much more money? Bigger car seats with a five-point harness that don’t cost the Earth to buy. They. Will. Sell!

Inclusive Play Parks

When playgrounds are built, so often children with autism and other disabilities are left out of the thought process. Bigger swings, equipment for wheelchairs, sensory play equipment. There are so many things that could make play parks inclusive. Yet, most aren’t inclusive in the slightest. This is why we love our own garden so much. There is play equipment Brody can use and we know he is safe, which is paramount.

But surely all children should be able to enjoy their local playground?

Rant over!

What do you think?

What would you add to the list if you could?

Maybe one day, if we all shout loud enough, someone out there will hear us and help us parents out.

Please?

 

Piece by Piece

Piece by piece, I felt my aching heart shatter into a million pieces. Each piece slowly tore away until my heart, which was once whole and perfect, crumbled into a million pieces. Little did I know that it would be slowly put back together, but in a much different way than before.

“Your child has autism.” It rolled off the doctor’s tongue as if it was nothing. It came out of her mouth so effortlessly and without any compassion. I sat there, feeling my heart start to break, piece by piece. Little did I know then that it was just the beginning of my broken heart.

As time went on, each piece disentangled more and more. The therapy schedule filled up and the life I knew before was no more.

My phone calls for catching up with friends turned into phone calls to fight insurance companies. My relationships with friends and family changed. I no longer could be the friend I wanted to be. I couldn’t do shopping trips away from my child. I couldn’t have a girl’s night out. It simply couldn’t happen. I had a child who needed me 24/7 and no one was pounding on my door, begging to babysit.

The anticipation as a first-time mother to hear my firstborn say, “Mommy, I love you” never came.

Trips to the store with my child simply couldn’t happen.

Normal, day-to-day living was hard work and exhausting. Nothing was easy. Brushing teeth, putting on clothes, and potty training were a far cry from what typical families experience.

Shopping for age-appropriate toys doesn’t happen. A simple look in the eye from my son may happen once a month, if I am lucky.

A full night’s rest was no more. We don’t know if and when we will sleep. Slowly, as life changed to adapt to our new life with autism, my heart just kept breaking, piece by piece.

The stages of grief came and they still happen daily. The rollercoaster life of autism was our new normal and it was the hardest thing that I have ever done in my life.

I soon found myself wondering the dreaded question: “What will happen to my child when I am gone?” I worry and ask myself this every single day.

Again, each day the pieces fell from my heart. It’s a hard life, but even though my heart broke piece by piece, I finally found the way to put it back together.

Slowly, over time, acceptance entered my life and I started to put the pieces back together.

As hard as it is some days, I started focusing on the positives. I started to see the joy in the unexpected. I soon saw the beauty. On some days, it is hard to find the beauty in severe autism, but there is always something even if it is a small thing. I long for the life I had before every day–that never goes away. However, I do enjoy the beauty of my new life.

Even though I have worked through and put the pieces of my heart back together, it will never be like it was before. I smile and laugh behind the scars that my heart has. The scars hurt and they are wounds from the life I envisioned for my child; a life without any trials. However, piece by piece, I put my heart back together and learned how to work though the scars. That is simply what we have to do.

Autism parents don’t have a choice. Our hearts breaks into a million pieces when our child is diagnosed and slowly, over time, the pieces are put back together, but in a different way than before. None of our closest family and friends could ever begin to fathom what we went through with each piece that was torn off. The only ones that know that feeling are other autism parents.

As time goes on, I hope you can enjoy how your new heart is put together, piece by piece.