E.C. Wells

I’m Autistic, and This Is Why I Dread Haircuts

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I’m an adult autistic person and haircuts are terrifying to me. I find it very frustrating, to be honest, but today—September 5, 2017—I just got my haircut. Staff support and friends were there to help and even though I was terrified enough that I just sat in the chair with eyes wide-open in terror pretty much the entire time, I was able to get through it.

The minute I walked into the salon, I was overwhelmed by the smells of perfumes and makeup, and the sensation of knowing I was there for a purpose that would automatically trigger my anxiety. I had my brave face on and I was ready for the task until the moment I stood in front of the desk and the man asked, “May I help you?” I froze.

Thankfully, my staff realized my feelings and initiated a conversation. I explained afterwards, once I found my voice, that I had anxiety. He seemed pretty nice and led me to a chair to get my hair washed (once things were figured out with what I wanted to get done). I have the unlucky/lucky genetic trait of curly/wavy hair, which is rather interesting to manage.

I was trying to find words, but the moment my glasses came off when he was washing my hair, I started to panic again and then he started asking questions. Thankfully, staff again helped, and things again went smoothly. Really, all I need is that extra hand when walking into the scary unknown and for reassurance. The rest I can do until it become scary again. Then I reach out and then I relax again and then I panic and then I relax again and then I panic. That was pretty much the entire haircut.

But outwardly? I don’t think anyone knew how terrified I was. And honestly, I’m okay with this. They don’t have to know how terrified I am; they just have to offer their hand and be there.

They were also able to help me by having me focus on something else and talking to me to help me think of other things. Even helping me answer the questions that made me panic. It frustrates me that this makes me panic so much because I’ve overcome so many things. I keep wondering what is the cause.

Maybe it’s because I can’t control the situation. Maybe it’s because I don’t know anything about the social norms. Maybe it’s because I don’t understand looks. I don’t know. Whatever it is, I get extremely uneasy once I’m in the chair and I freeze the entire time. But my staff and friends who came with me were able to help me. And this was one of the few times in my life I had a successful haircut without crying afterwards. I even got an undercut.

Afterwards, I rewarded myself with a cherry chocolate Blizzard from Dairy Queen and, to be honest, I went shopping  as well and I lucked onto an awesome sale that I don’t regret. I’m still calming down from anxiety, but I am so thankful that I had people who understood me and were there with me.

I still don’t understand the concept of hair, and why hairstyles are so complex. I mean, I like being able to do things with my hair. But I just hate how people judge you for it. If I put my hair up in pigtails, all of a sudden I look so young that I get hit on by people way younger than me. Not only does that make things awkward for me—because I still don’t really understand when I’m being flirted with unless they’re being very very obvious—but usually I’m not interested, which makes things even more awkward.

Anyway, I got a lot of compliments when I posted my selfie on Facebook. I got a lot of smiley faces and congratulations, but to be honest, I was way more excited about the fact that I actually succeeded with not  crying after the haircut. I know I shouldn’t reward myself with food (my therapist and I have been working on that), but I’m not yet at that stage. And she said it’s okay to accept that I’m not at that stage yet, and to treat myself once in awhile after a really bad day. Or to reward myself after doing something really hard.

So I decided that instead of doing it after negative things, I’m only going to reward myself for doing really tough things. Because I kept falling into the bad pattern of treating myself after bad days again and again and again. And she was really proud of me for making that healthy choice. And you know what? I’m really proud of me, too. Plus, I have two new adorable Pusheen plushies that I can cuddle with and calm down with in the comfort of my own home and it’s all because I got a brand-new haircut.

Anonymous

I Regret Ever Asking for Help

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I was at such a low point on the day I called for help. I had struggled for so long and was getting nowhere and my kids were causing me so much concern. Life at home was bad and I knew if I didn’t do something, life would collapse under me. Autism is not pretty and I could not face any of my kids having another meltdown. I guess you could say I had my own meltdown, in a way.

I called for help.

I called the school first. I regret that.

My kids are just so typical of millions of autistic kids: They hold it together at school and I get the full brunt of everything at home. I had been to Parents Nights and heard all about how well-behaved they were. I always left wondering if they had the right child, as at home I never hear a gentle voice or a kind word.

I called the school for help but they turned on me. It was not my kids, according to them. No—it was my parenting.

Now, I swear they ignore my calls and see me as some sort of failure or fraud, I am not sure which. I get no support from there.

Then I called social services. I regret that, too.

Oh, they did come and see me. In fact, I can’t get rid of them now! They scrutinized me and had me jump through hoops for everything. Seriously, they wanted to know what job my grandparents did and at what age I first rode a bike, just to find out if there was any way I could get a break sometime! I had to go to this course, do this thing, look into this place and so forth, just to prove myself to them. It mentally destroyed me. I have managed to get a little bit of support now, but at what cost to my mental health and my time? The fight for the smallest of things consumed me and my family to the point we dreaded every home visit.

I called therapists. Some of those I regret ever setting eyes on.

You must think I am so negative and ungrateful, but would you enjoy a stranger coming to your house and criticizing everything from your decor to your lifestyle, and everything in between? I was hoping my kids would get therapy and support, but instead I found myself talking to more and more people and my kids seeing fewer and fewer professionals. Whether deliberate or not, I always came away feeling like I was a failure and never good enough. 

I called family. That was an utter waste of time, too. It is best that I say nothing more about that.

I thought I was in crisis when I called for help. I was exhausted from too many meltdowns, too little sleep and fighting the system alone.

Now I am still all of the above, but I am also depressed, demoralized, defenseless and full of regret.

My marriage is on the verge of collapse and my kids are struggling more than they were when I first called for help.

Asking for help put me through hell, not because I was unwilling to work with people or accept help, but because all that happened was I got blamed and bullied like my children’s autism was all my fault. 

This is just my story. I know many people who asked for help and who have gained help and are in a better place now. I guess it all depends on whether school are supportive, whether social services believes you and works with you, and whether you find some great therapists.

Maybe I was “unlucky.” I hope so.

I did learn a few things, though. I learned that schools can pretend all is well when it isn’t. I learned that I must brush up on my great-great-grandmother’s second cousin’s health records, as apparently these things are necessary just to get help for my autistic kids. And I learned that even being desperate for help does not mean people will listen to you.

I am now on medication for depression and anxiety. My kids are still screaming and destroying my house, and one is self-harming. I am socially isolated and utterly exhausted. Nothing has changed except I regret asking for help.

Megan Burgess

‘A Boy Called Po’: An Honest Look at Autism

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While, undoubtedly, there’s bound to be a select few moviegoers who storm out of the latest Marvel movie, enraged for one reason or another, it’s a pretty safe bet that the vast majority of viewers will leave the theater either entertained or not entertained. But when one creates art that imitates real life, they tread a finer line. Films about disability and illness must walk this tightrope like no other genre.

If you’ve been affected by disability or illness in your lifetime, and chances are you have, then watching a film that strikes a chord with your past or present situation can be difficult to watch. This reaction is paradoxical: If a film resonates with you, it can be emotionally challenging and painfully cathartic. At times, we instinctively look away because the image on the screen aligns too accurately with the images imprinted in our memories. Similarly, if the film does not resonate, or worse, fails to capture its subject’s authentic struggle, it is equally painful to watch. It feels offensive and insulting to one’s core. In other words, it can really piss you off.

I can certainly relate to both sides of this dichotomy. Growing up, my mother was an alcoholic. While she now has 18 years of sobriety, I still find certain films about alcoholism extremely challenging to watch. Whether a film completely misses the mark or hits too close to home, the inclination to turn away is tantamount. I cannot endure watching the personal hardships of my childhood made light of in Sandra Bullock’s “28 Days.” It’s infuriating.

But on the other side of this same coin, I always flinch and look away from certain scenes in “When a Man Loves a Woman.” It’s too close, too familiar. It stays with me afterward, longer than other movies or books. It digs up a shovel full of memories and emotions that I swear I buried years ago and dumps them on my doorstep. But it feels good. It connects me. Like pouring salt on an open wound, it stings, but also cleanses and promotes healing.

Watching films that portray our personal situations and histories can be difficult, but when they’re real and raw and honest and just get what we have been through, it’s worth it. They connect us, not only to ourselves and our journeys, but to everyone else in this world who has gone through it, too. They even connect us with those who have not traversed our unique paths. When we share a film with others that authentically captures the essence of our individual struggle, we begin to cultivate understanding, and somewhere deep beneath the surface of our collective consciousness tiny roots of acceptance begin to sprout and multiply. It’s quite powerful.

So when I was asked to screen “A Boy Called Po,” a film about autism directed, produced, and edited by John Asher, I knew the fine line I would be walking if I accepted. My son is autistic. While he was diagnosed a little over six months ago, I’ve been hiking uphill with autism on my shoulders for three-and-a-half years now. I knew if I watched the film I would cringe. I just didn’t know if it would be because it failed to do justice to my family’s personal journey, or if it would be because it hit too close to home.

Films I had previously seen about autism didn’t necessarily enrage me. But at the same time, “Rain Man,” “The Accountant” and, dare I say, even “Temple Grandin,” left me entertained but still wondering exactly where my personal reality was being portrayed on the silver screen. My life is filled with autism, but trust me, there is no card counting in Vegas and no secret accounting/crime-fighting syndication. Not even your classic farm innovation. It’s just my family, and autism. Is my family’s personal autistic reality not juicy enough for Hollywood? We are so misunderstood; so desperate for awareness and acceptance. Why is no one telling our story?

So I agreed to watch “A Boy Called Po,” and yes, at moments, it was difficult for me.

I winced each time the film’s autistic protagonist ,“Po,” played by Julian Feder, self-regulated or stimmed in a familiar way. I leaned forward, teeth-clenched and alert, anytime he was in danger or in pain. I chuckled aloud to myself and enjoyed a familiar eye-roll each time Po demanded “mac and cheese, please.” And each and every time Po asked his father, “Where’s Mommy,” I instinctively peered upward, attempting to deprive the rising tide of tears within my eyes the validation of an expectant cheek.

I hung my head in shame when Po’s Father, David, played by Christopher Gorham, lost his composure or verged on a breakdown. Every time he felt lost, or judged, or completely and utterly defeated, so did I. I was right there with him. Because I am there, every single day. So yeah, you could say that it hit home.

It hit home in every single aspect of my current reality as the mother of an autistic child. The constant questioning: Trust my gut or trust every professional? Socialize at the risk of bullying or shelter with the risk of solitude? Challenge by mainstreaming or support with peer acceptance?

Watching your financial stability sift like sand through your fingers, while also managing to simultaneously fail at parenting. Becoming accustomed to the absurdity of insurance policies and the infinite maze of red tape we are forced to blindly navigate. Facing mortality a little earlier than anyone should have to. Feeling alone in it. Being alone in it. It was all there in front of me, and while there were scenes from which I instinctively turned away, my gaze eagerly returned each time. As Emily Dickinson once wrote, “I like a look of agony, because I know it’s true.” I know this film speaks truth; it is drenched in my truth.

As the credits rolled, I let out a deep sigh and sat quietly for a while, a true anomaly for a neurotic like myself. What was I to do with all these feelings on my doorstep? Well, I could do what I always do. I could write about it. I could tell you about it.

Maybe you could tell your family and friends who don’t quite “get it,” like you wish they could. Maybe I could tell the other moms at my son’s preschool about the film. Maybe they’ll watch it and sit quietly afterward, pondering what to do with the feelings on their doorsteps. Maybe they’ll talk with their children who are in my son’s class. Maybe my family and friends will finally have more to go off of than “Rain Man” and “The Accountant” when trying to understand my son’s disability.

Maybe we can advocate for our children and one another by sending a message to mainstream media that we are no longer a minority, and that our lives are in no way lacking in the substance department. We are everywhere. We just don’t always raise our hands. They are very full, and carrying precious cargo. But the kind of acceptance we want, we can’t just ask for. We must spread it like wildfire. We can begin to communicate our daily challenges and nightly circling thoughts with one simple sentence. “You should really see ‘A Boy Called Po.’”

Sometimes we are so immersed in our own struggle, knee-deep in appointments and sleep deprivation, that we do not have the strength to advocate. We are not storytellers; we are exhausted parents. But director John Asher happens to be both. He has done our children a great service by making this film, and we can pay it forward quite easily.

Besides all of you, I plan on telling at least one fellow special needs mom, one family member, and one neurotypical friend or parent about “A Boy Called Po.” My hope is that you will do the same. If just one person looks upon my son with increased understanding because of it, well, then that’s the best payoff anyone’s had since Tom Cruise in “Rain Man,” and it’s about time.

———-

“A Boy Called Po” can be seen at select theaters near you beginning September 1, and for a limited time. For those of you that can’t make it to the movies, “A Boy Called Po” is available on iTunes.

 

For more on “A Boy Called Po,” visit:

Facebook: A Boy Called Po

Twitter: A Boy Called Po

*I’d like to thank Taylor Shannon of Prodigy Public Relations and John Asher, for dumping this shovelful of truth on my doorstep. Finally, I’d like to thank AutismAwareness.com for dumping it on yours!

Kate Hooven

Still the One

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As with all of my son’s musical performances, I had arrived an hour and half early so I could be in the front row. Some of this is so I don’t get stuck behind someone with an extraordinarily large head and can actually see my son, but, mostly it is so my son can see me.

The music begins, and my teenage son walks across the stage. I swear I can feel my heart expand. He finds his mark, turns towards his fellow performer and engages in pretend conversation. I smile proudly, recognizing the irony of him easily acting out a conversation on stage while actually being part of one offstage is difficult for him. As the scene unfolds and the music begins, he starts singing and comes to the front of the stage, directly in front of me. My smile gets bigger.

Still singing in that beautiful tenor voice of his, he doesn’t miss a beat as he searches the front row. He knows that’s where he will find me, and sure enough, he does. He sees me. His eyes lock with mine and he tries to fight back the smile so as to not break character.

He sees me. Whether I’m to the left of the stage or the right, whether I’m across the kitchen table or beside him, whether I’m in the back of the classroom or the front, he sees me because I am the one who is always there.

Over the years, the way my son sees me has changed in many ways.

As a sweet, happy infant, he saw me as the one who provided the milk, picked him up when he was sad and sang out-of-key (before he knew I was out of key and cared).

As a toddler, with severe sensory sensitivities, he saw me as the one who calmed him after haircuts, thunderstorms and close encounters with any type of winged insect, and did whatever I could to “make it better.”

As a little boy, whose need for routine and sameness made the world feel calmer, he saw me as the one who found the right shirt, the right shoes, the right mac and cheese, and the right waffles, no matter how many stores we had to enter to find the “right” whatever.

As an anxious middle schooler, he saw me as the one who nagged him and pushed him to do things and try things that he did not feel comfortable doing because I knew stepping outside his comfort zone would help him be successful.

As a typical high schooler, he now sees me as the one who knows nothing about Pokémon Go and Minecraft, the one who knows nothing about singing in key (and now cares) and the one he tells with great regularity, “You nothing about me.” But, yet, I’m still the one he searches for in a sea of faces in a high school auditorium.

I’m still the one.

Of course, it makes sense that time has changed how my son sees me because time has changed what he is looking for from me. My son may no longer see me as the bug hero, the waffle getter or the right shirt finder because his needs, his wants, his fears, and his dreams have changed.

How he sees me may be different, but what matters most is that he still looks for me and knows I’m the one who will be there. Regardless of how badly I sing, how annoying I am and how much I push and nag, he will always see me because I have always been, and will always be, the one who sees him.

Miriam Gwynne

When Your Child’s Obsession Consumes the Whole Family

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My son love lifts (elevators, to those of you in the U.S.). He has for many years now. He watches lift doors open and close on YouTube, he knows every shop in our town and beyond that has a lift, and when he has hospital appointments we have to visit every lift in the entire hospital.

It is consuming!

It rules his life. He is drawn to lifts like metal is drawn to a magnet. He cannot simply walk on by or use it for the functional purpose of just moving up or down one floor. No! He has to press every level, every time. He has to get out at different floors and watch the same doors open and close from every possible angle. He has to flap and dance and giggle at people getting in, people getting out and the repetitive announcements telling you which floor you are on. He has to touch every wall, put his ear to the back and have a fit of the giggles at me preventing him from pressing the emergency alarm…at every single level!

It is consuming!

I can’t just go to the shop to pick up milk or a loaf of bread because my local supermarket happens to have a lift in the car park and two inside the shop. He either cannot come with me (which involves a complete meltdown because, despite having limited understanding, he seems to sense when I am going to somewhere with a lift) or he comes with me, and I risk leaving after having only made it to the lift. Moving him on is almost impossible. It involves him self-harming and screaming, and me physically dragging him and sometimes having to call for backup. It is not pretty.

It is consuming.

He loses all track of time in a lift. It is like an entire world to him. He loves the noise, the echo, the shiny walls, the confined space, the predictability, the voice that comes out at just the right time, the buttons he can press and the feeling of it moving. It is exciting. It is his “happy place” and he would stay there all day, every day. But I can’t let him.

But I film him so he can watch himself back. I use “first and then” and desperately bribe him to come away. I use timers and warnings. I use visuals and talkers. I could send God himself to rescue him but Isaac still would not care.

He is consumed by his obsession and nothing will move him on.

Isaac is loved deeply. We allow him time at his obsession even though his sister would rather stick pins in herself than be at a lift. But what do you do when every family outing, every waking minute on YouTube and every Google search (for images, as he has no ability to read or write) are all consumed with your child’s obsession?

There has to be a balance. Isaac has no understanding of why he cannot be utterly saturated in his own obsession. He has no awareness of the needs of others or that shops even have closing times. He craves the sensory feedback of lifts like you and I crave water and food. To deny him that would be to destroy him.

So, what do you do when you are consumed by the needs and wants of one member of the family?

It is hard to get the balance right. We have tried the splitting-up idea, where one adult has the thrilling day of lifts (yes, I am being sarcastic!) and the other entertains his sister. That eventually causes resentment. We have tried days without lifts (that was that awful screaming you heard ringing in your ear thousands of miles from me). We have tried compromising. (Have you ever tried to reason with a severely autistic, non-verbal 8-year-old? It isn’t fun!) We have even tried the seesaw approach of you get a lift and we all get something we want too. That went down like a lead balloon.

There is no “little bit” when it comes to an autism obsession. There are no “forget about it” days.

It consumes them, so it consumes us.

We are trying to teach our son patience, self-control and limitations. Meanwhile, he has other ideas…

By the way, I spent so long at a lift today that I typed most of this up while watching him. His obsession really has consumed me now, too…I am even writing about it!

That is what happens when your child’s obsession consumes the whole family.

Geraldine Renton

Nothing Like the Autism You See on TV

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Yesterday is something I try not to linger over.

Sometimes, however, I can’t help but recall the days gone by.

For us, autism is mixed in with Hunter syndrome. Hunter syndrome takes everything away from my son until he has nothing left. He has become a shell of his former self.

The Autism side of his syndrome, however, is different from the Autism that is now becoming “known” through TV shows and popular culture.

The Ethan of yesterday had to have certain things done in a certain way. I remember we used a picture board to show him how his day would go. We would have pictures of his breakfast, then the bath, and so on… This worked remarkably well until he changed the photos to things like his grandparents’ house instead of the doctor picture. I smile now when I think of the cleverness he showed us then…

We used to use “Lámh” signs to communicate with Ethan when his hearing began to decrease. He was very quick to sign the words he felt he needed. It really made us laugh that he chose which words to learn: pizza, hungry, drink, go away, leave me alone, give me, I want and, of course, I love you.

For years, our life with Ethan and his Autism was all about preparing and explaining. Keeping Ethan in the “loop” of what was going to happen or what was happening was what Autism was for us. We avoided overcrowded places and we could always spot a meltdown beginning. Ethan was excellent at regulating himself too, making our job with a meltdown a little bit more manageable.

Slowly, as his syndrome took over, his version of Autism changed.

His syndrome attacks his brain as much as it attacks his little body.

He became confused. He began to have meltdowns, especially if we were in public places. He experienced what we now know as a sensory overload.

His communication began to decline—slowly at first, and then quite rapidly late last year.

This is when Autism took a dark turn for our family.

Ethan became violent. He spent almost full days in a meltdown state. He rocked himself so hard on his chair that the chair toppled over.

Ethan was hospitalized late last year on a number of occasions due to his behaviour. We couldn’t cope. We didn’t know what was happening to our little boy who once used to laugh and sing his heart out to SpongeBob.

I don’t like to think of “yesterday” and how things have changed, because for us, the change is a decline. The change is unbelievably heartbreaking and the change is nothing like the Autism we see on TV.

His decline ensured his Autism would change.

It took months of trying different drugs, a peg insertion and understanding that Ethan was never going to be the “Ethan” of yesterday ever again, to get us to where we are today—stable, with a different type of Autism.

He still needs routine, but now when that routine is out of sync or if he feels over-stimulated, he cannot regulate himself like he once did. He goes straight into a meltdown. Sometimes the meltdown doesn’t last long, mainly due to his medication balance, but other times it is violent, very violent, and nothing like the Autism you see on TV.

In the yesterdays of long ago, he could tell me he was sore, never straight out, but he’d show me and keep at me until I understood. I didn’t realise it then, but that took patience on his part, a level of patience I never really knew he had at the time.

Today, if he is sore, he lashes out.

I am in a world of guessing. The doctors are in this world of guessing, too. There are no straight answers for Ethan. We try a few different things and hope that something helps ease whatever has him upset.

The latest change to Ethan’s medication is Charlotte’s Web oil. Since beginning that oil, Ethan smiles, laughs and even tries to sing once more. He is vocal. He can engage, but somethings never change, Ethan will only engage when he’s in the mood to, which makes us laugh, as he has always been stubborn.

The meltdowns still come. They are less frequent and less violent, but they are still not easy to predict.

As the saying goes, if you know someone with Autism, then you know someONE with autism. Just one.

Reneé Davis

Why I (Sometimes) Hate Autism 

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Having gone to great lengths to heal myself after my own troubled childhood, I didn’t arrive at my current state of mind quickly. It’s been a gradual thing over the last few years. Ever since my third child’s birth in 2014, which coincided with my eldest daughter Polly’s challenges becoming evident, life has been a total roller coaster. It pains me to say this, but we have way more downs than ups in my little family, and it’s been like this for longer than I care to admit.

The hardest part of 8-year-old Polly’s autism is watching how she treats 3-year-old Freddy and 5-year-old Clara. It went past standard sibling rivalry long ago, and morphed into something so ugly I can’t bring myself to say the words. Polly went through a phase of using me and only me as her punching bag (verbal and physical). I could handle that. It wasn’t pleasant, but I’d rather be copping it to keep the little ones safe.

Unfortunately, after a series of setbacks, she’s back to picking on them with force. Her anger and violence often comes out of nowhere. She goes from zero to 100 in five seconds, and after she’s hurt the three of us, I’m left bewildered, picking up the pieces. The very worst part is that she knows how to behave appropriately in public or with her friends. It’s just us she chooses to treat this way.

Seeing the effect of Polly’s aggression on Clara and Freddy has been nothing short of heartbreaking. Watching them copy the behaviour is tough enough, but when Clara takes out her own frustrations on Freddy it makes me want to weep. And it’s happening a lot lately.

Usually I’m as good at masking my sadness as Polly is at masking her high-functioning autism. Lately though, I’ve been told that I look tired, and am being asked a lot if I’m okay.

Just to be explicit, I am not okay. 

I’ve made myself vulnerable recently, asked for help from the only people in a position to give it, and was told that they are too busy. I’ve also enquired about autism-related services, which were free six months ago, but due to funding cuts here in the U.K., they now cost a fortune that we don’t have.

I have had a terrifying glimpse into a future that I can’t even allow myself to think we might lead long-term.

“Friends” are dropping like flies, leaving me to question whether I’ve become a toxic influence. Am I unbearable to be around? It’s making me wonder.

My body started giving up; I knew it was only a matter of time before it did. It’s well-documented that chronic stress will eventually turn into disease.

This is how it starts.

This is how the rot sets in, and the bitterness creeps into your exhausted, aching soul. When you look around and see that everyone else is thriving, but your family is scraping the bottom of the barrel, barely surviving most days. It makes you angry and resentful. I hate autism for making me feel this way. For robbing me of the ability to enjoy my children.

I tell myself over and over that I’ve been through worse. My goodness, what I’d been through by the time I was Polly’s age! I will come out winning, if it’s the very last thing I do. Right now, though, these soul-destroying dark days are killing me.

“The kids will be fine,” they say. But what do they know? Are they experts in violent, challenging, autistic children? Of course they’re not. They rarely are. Well-wishing platitudes from insincere people have no place in my life.

Rise above it.

Some days I hate autism. If I could meet autism down a dark alley—my goodness, I’d kick its butt.

Some days, when the kids are finally in bed and all that’s left is the ringing in my ears, there are no words left to say or tears to cry.

And other days? I engage my reserves and summon every bit of strength I have to rise above the screaming and shouting and hitting and kicking and throwing and name calling. I dish out the positive vibes and mama love like there is no tomorrow.

Even when the challenges seem insurmountable, I’m able to rise above them and continue smiling.

On these days I win and, in turn, my children win. And when all is said and done, that’s all that matters.

Kelly Kemp

If I Could Grant Three Wishes for My Autistic Child

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When I we were expecting Baby No. 2 and I found out that she was a girl, I was so excited. I already had a son and a stepson, so I was well outnumbered. I dreamed that my daughter would become my best friend. I pictured us doing mommy-daughter things together: shopping, pampering, afternoon tea, girly days out and heart-to-hearts about friends, boyfriends and life. I dreamed of a wedding, grandchildren…

And then we learned she is autistic, and all those hopes and dreams felt as though they were slipping away like grains of sand through my fingers.

Suddenly, the future for our daughter was unclear, blurry, foggy. Dark. We had no idea what she would and wouldn’t be capable of, and what life would have in store for her.

I was blinded by the diagnosis. What I had failed to realise, in those very early days, was that I could still have hopes and dreams for her, and for us, but they would just be different than the wishes I had before. These are my wishes.

Wish #1: I wish for her to be educated in a way that means she can get the most out of her school days. I no longer dream of her going to university or having a great career (although either could definitely still happen!). I don’t mind so much about academics, although I would love for her to read and write (even if that means “writing” with an iPad instead of a pen).

I really want her to learn the things that mainstream schools do not focus on as much. I want her to learn social skills—she needs to be taught, rather than just picking skills up through interaction and experience. I want her to learn about the world—not geography, but her world—and how to live in it. I want her to learn independence so that, one day, she might be capable of living away from us.

Wish #2: I wish that she has friends and leads a happy life. She is already popular at Nursery, with other children keen to talk and play with her, but she isn’t yet able to respond to their interest. I hope that, in time, she will be able to form meaningful friendships with people who “get” her. Maybe she’ll even find love.

As long as she’s happy, I’ll be happy. I don’t want her life to be a struggle, and I hope that we can arm her with the ability and vocabulary to express to us if it does become difficult, so that we can help.

Wish #3: I wish for her to be accepted. Society, while making great strides in recognising the needs of autistic people, still has a long, long way to go until being autistic is no big differentiator. I hope that by the time my daughter is an adult, being autistic isn’t even a “thing”—it’s just another way of being.

I hope that the accommodations some businesses and places make now are commonplace all over and that everyone working in a public-facing role has at least basic-level autism awareness training. I would hope that this knowledge and understanding would spread so that everyone knows more about autism, and our autistic loved ones are treated with the kindness, respect and care that they deserve.

I don’t think these wishes are unrealistic or unachievable. And, who knows? She may end up married and with a family and a fantastic career of her own one day. But, whatever happens, I do know that she will be my best friend and I will do everything in my power to make sure she’s happy.

Instead of the blurry, dark future I feared when she was first diagnosed, I have come to realise that she is the light, and her future is bright.

Charlie Beswick

Autism and Behavior: Am I Making Allowances or Excuses?

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Harry was born with a very rare craniofacial condition and so, right from the beginning, we knew life would be different for us—both from the one we had imagined and from the lives of our friends.

As Harry is a twin, it was natural for us to compare his development with his brother Oliver’s. However, unlike a lot of parents, it wasn’t the delay that we noticed first.

Harry taught himself his letters and numbers way before Oliver, thanks to his electronic phonics and numbers boards. Although he couldn’t tell you, he would always choose the right answer when you asked him to select a letter or digit. He was fab. He also taught himself how to play the piano from around age 2 1/2. Of course, we know now that the familiar and ever consistent sound made by the same note means that Harry’s autistic mind hears a predictable pattern, whereas Oliver only heard noise. I was so proud!

In time, we came to see the typical signs that would lead us down the road to assessment. Harry rocked and flapped constantly, wouldn’t interact with other children at all, and was obsessive about certain items or toys. He had high scores in each area of the “triad of impairment” and at just age 4, he had his diagnosis of autism.

The diagnosis itself didn’t change anything for us as Harry had already just started at special educational provision, but it did mean that we were more aware of his behaviour and reactions and tried to explain them within the context of his new diagnosis.

Over the past 11 years, Harry has endured some huge operations to correct the shape and formation of his skull and palate. It’s impossible not to make allowances for his negative reactions to the doctors and hospitals, which he has feared, but something struck me lately when I noticed a change in him.

When telling Harry that he was going to the hospital, he used to get extremely upset and nervous. Now, he laughs and replies with “Yay! Vtech toy!” Why? Because we have positively reinforced his experience with a trip to a local toy store after each operation and procedure. We justified it as his treat for being so brave, and although it’s true that he was incredibly brave, we ended up creating another expectation and habit that is now very hard to break.

How many of his quirky autistic habits have been unwittingly created by us? And how much of his behaviour do I make allowances for by explaining it as part of his diagnosis? Here are a few examples to consider:

Harry has phases where he bakes his toys in the oven when I’m not looking.

My explanation: It’s because he’s seen me cooking or has been doing cookery at school and is taking an interest in it himself.

Another possibility: He remembers my scream from the first time and just finds it incredibly entertaining to wind me up.

Harry has started to kick out at the dog for no reason and without warning.

My explanation: He doesn’t like how unpredictable the dog is and he doesn’t like the texture of his fur, so he feels scared when the dog’s around.

Another possibility: He simply doesn’t like the dog!

He has a meltdown.

My explanation: He could be in pain, overtired or experiencing sensory overload where we are at that time.

Another possibility: He’s tired and grumpy and unable to tell me why. He’s had enough of being there or doing what we are doing and wants to go home.

He lashes out at Oliver and hits or punches him sometimes.

My explanation: He’s trying to interact and loves Oliver the most, so he focuses on him sometimes.

Another possibility: He’s just having a moment where he’s feeling particularly mean and is taking it out on his brother (like I did as a child with mine and many other siblings do).

I’m not trying to trivialise these aspects of autism at all, as they are significant challenges for our children and us as parents. But I’m just thinking out loud and I feel that I have as much a responsibility to question my own responses as I do to consider Harry’s actions.

Isn’t it just as feasible that, as well as expressing himself within the restrictions of non-verbal autism, he’s just playing up like any neurotypical child? Where does the autism stop and the child begin? It’s impossible to know.

But when I see him, even in the moments that exhaust and frustrate me, I’m also in awe of him. Of the uncomplicated way he views the world; the way he does what he wants when he wants and is free from how he “should” be feeling or acting; the unconditional love that he gives so beautifully.

So, whether they’re excuses or allowances, I have to wonder: Does it matter? Am I beating myself up and overthinking (just two of my strongest traits) unnecessarily?

Yes, maybe I do make excuses for him when I should be punishing him (that’s not to say I don’t tell him off because I do—he needs to know right from wrong). But I also make allowances for his frustrations and confusion because there are times when, without a doubt, he is responding through his autism. And let’s face it, most of the time I am too busy laughing at his crafty tricks and funny acts to wonder why he’s doing them.

Autism life is fast-paced, full of questions, and peppered with responsibility and big decisions, but never, ever is it dull. And I wouldn’t have it any other way.

Geraldine Renton

On the Days That I Break

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I hear him. I can hear him limping around his room. I can hear him cough. I can hear him randomly shouting words—words he once had, words that mean nothing now.

I check his bedroom camera. I zoom in to see if he can wait the five minutes I need to coax my body into waking up. My back is stiff and sore. My neck creaks.

I am 36, so I am pretty sure I am too young to be feeling so stiff and sore in the morning.

My mind tells my body to get up.

My body refuses.

Today is already one of those days.

The days when I just can’t. The days when it takes so much to stop myself from breaking. I know these days well; I have them often.

I know today will be a day that I will break; a day that I will spend counting down the hours until bedtime.

It’s a horrible feeling. It’s a feeling wrapped in heavy guilt.

My child is terminally ill and I have days when I just can’t do it.

Society tells me to relish every minute with my son, for I know what his future holds. I tell myself the same, but some days it’s hard. It’s hard to take the slaps, punches, pinches and kicks, and still find something to be grateful for.

I know I will feel a huge amount of guilt over feeling this way, especially when I can’t hear him or see him or hold him anymore. I remind myself of this and that is the reason I get up: Guilt is powerful.

Just managing to get by isn’t easy or something any parent wants to do when it comes to their kids. But on the days that I break, it’s all I can do. I push the guilt away and remind myself that I am human.

I get up. I go into his room and I clean him and everything else that requires cleaning. He’s happy to see me, but not for long. He doesn’t like to be cleaned, and the wipes, the cream, are all too alien to him despite us having used them for years now.

I get it done and we begin our day.

He is out of routine.

He expects a bus to come get him, but I know that bus isn’t coming for another three weeks. He doesn’t know or understand this.

I watch the clock as I feed him and medicate him.

He lashes out as I clean his peg site. I don’t dodge the slap in time, which means I have a fresh scrape on my face. More explaining to do when I meet friends or family, and even strangers some days.

Once, a woman very kindly handed me a card when my husband wasn’t looking. It was for an abused women’s home. She presumed my husband was behind my black eye and scraped face. My husband is a big man who is used to getting the evil eye from random strangers when my face cannot be hidden behind makeup.

Some days I break.

I want to run away and not come back. I don’t want to do all the caring. I want to stay in bed and pretend my life is just like yours.

People tell me that at least I don’t have the future worry of what will happen to Ethan once I am gone. They are right—I don’t have that worry.

I worry about what will happen to us when my son is no longer here. How will that feel? Will I be able to look at myself in the mirror then, knowing that there were days when I wanted to run away from everything, including him?

For me, autism is very different from the shows we see on TV. For me, disabilities are very different from the shows we see on TV.

Our life with Autism is violent.

Our life with disability is heartbreakingly painful, as we watch our son lose each and every skill he ever had.

So, yes, I have days when I break. Days when the world I live in is too much for me. Days when I want to run. Days when I wish for a different life and days when I am angry at the life I have.

Am I ungrateful? I don’t know.

Are there worse situations out there? I am sure there are, but that doesn’t make my situation any easier.

I think society puts us parents on a pedestal by saying things like “I couldn’t do it” or “I don’t know how you do it.” The truth of it is, as well-intentioned as those types of comments are, they often make me personally feel like I am not doing it. Because there are days when I break, days when I just can’t, and days when the only thing that gets me up is guilt.

I think that the only way parents like me can change this view is to be honest, be open, and admit there are days when we just break.

And it’s OK.

It’s OK to feel like running away.

And it is OK to tell society the harsh truth about being a parent to a child with a life-limiting condition or autism or Down syndrome or any other disabilities or challenges.