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

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!

Still the One

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.

When Your Child’s Obsession Consumes the Whole Family

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.

Nothing Like the Autism You See on TV

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.

Is There Really Such a Thing as a ‘Silent Prom’?

I admit it—I binge-watched “Atypical.” And, while I recognize there are both fans and critics of the show, I’m sure you found the idea of a “Silent Prom” as fascinating as I did. In fact, I loved the idea so much, I was immediately curious to know whether this was “a thing” in the real world.

It turns out that it is, and it isn’t.

There are several entertainment companies that host weekly “silent discos” (also called quiet clubs), mainly in big cities such as New York City. At these clubs, customers each receive a set of wireless headphones, just like the promgoers on “Atypical.” However, the clubs have three DJs spinning music on three different “channels” and the dancers can tune in to any of the three (making it a competition between the DJs for the most listeners).

Companies like SoundOff, Silent Events and Hush Concerts rent out wireless headphones and audio equipment for various occasions, including college dances, but at a cost that’s likely prohibitive for most high schools.

While it appears that the idea of a silent prom is currently mostly a Hollywood dream, schools can still host sensory-friendly proms, like the Shine! Prom. Or do what these high schoolers in Georgia did: They put on a second prom with low music and no bright lights so that a schoolmate who suffers from seizures could attend. Inclusion at its most caring.

The Top 10 Things the Best Teachers Do

I love teachers. They don’t get paid what they are worth, they aren’t supported enough financially (and often emotionally) by their schools, and they have to deal with parents. I don’t envy them.

Every year I write a long letter to my son’s teachers. I also include a Starbucks gift card with it. From the very beginning, I want them to know I am on Team Teacher and that I want to work with them to make the year a good one for everyone. For the most part, I’ve been lucky to have worked with some talented and thoughtful teachers.The best all had several things in common.

Here is my Top 10 list of things that the best ones did that really helped me and my child. The best teachers:

  1. Listen to me and ask questions. They acknowledge that I am the expert on my child and come to me whenever they have a problem and don’t know how to address it.
  2. Are the ones that validate to the parents that it is hard to raise a special needs child. And they recognize that even the kids who are best behaved in school often lash out once they get home.
  3. See my kid for who he is outside of the autism. These are the ones who still come up to us years later for hugs. They love my child, and I love them for that.
  4. Keep me informed about issues in the classroom, even the small ones, instead of waiting until a major incident happens.
  5. Come to the table with ideas. It’s hard when teachers always ask me for extra ideas. Especially when I don’t know what they can or cannot do. The best ones do research or have years of experience to fall back on. This is important, because my child won’t be the only child with autism that they will have to work with.
  6. Tell me about the good stuff, too. This, so much! It makes my day.
  7. Let me know right away if it’s good news or bad news. Every time I get a call or email, or see a teacher walking with my child out of school, I automatically think the worst. It’s comforting when I know right off the bat if bad news is coming.
  8. Adapt their style of teaching and communicating to their students to meet each child’s individual needs. These are the teachers that will do sticker charts or other motivational tools to help my son stay on track for the day.
  9. Have a clear set of rules that are also flexible to meet the needs of each student. These are the teachers who have clear classroom behavior expectations, but make room for redirecting and giving a child the chance to turn things on their own. Especially during unstructured time and during transitions when kids can have the most problems. They usually use positive reinforcement instead of punitive measures of classroom control.
  10. Are the ones that show up every day to teach their students, inspire them, and love on them.

I can’t thank teachers enough for all of their hard work and dedication. There have been a few amazing teachers in my son’s life that I will never forget. They were there for me in the hard times with love and support, and without them, I don’t know how I could have coped.

What Not to Say to a Special Needs Parent

Being a mother to a child with autism means that I’m often on the receiving end of judgmental comments and stares, unwanted advice, and somewhat well-meaning—at least I hope—comments from friends and strangers alike. It’s what I hate most about autism.

Sadly, every day, special needs families that are already overburdened have to deal with this added stress. When my son was a baby, people often offered all kinds of ideas about how I could help soothe him since he cried a lot. Other moms would mention how odd it was that he needed to be swaddled at 10 months, or that he didn’t crawl for a really long time. The older he got, the ruder and more intrusive the comments got.

Strangers would come up to me and say things that would bring me to tears or, worse yet, say nothing. None of these things helped me. And, while for the most part people don’t mean to be hurtful, they sometimes are without even knowing it.

Here are just a few of the things people should never say to a special needs parent:

1. Your son doesn’t look autistic.

Autism is a spectrum, which means not all cases are the same. The adage goes, if you know someone with autism, you know someone with autism. So telling a parent this is NOT comforting at all. It hurts. Don’t say it. What should you say when your friend tells you their child’s diagnosis? You should listen, validate their feelings, and let them know that you are there to support them. Sometimes just holding space with someone means the world.

2. My kid acts out, too. It’s totally normal.

There is a big difference between a child throwing a tantrum and a child with autism having a meltdown. When a kid has a tantrum, they often do it for attention, have control over themselves, and are able to calm themselves down afterward. Whereas with meltdowns, the kids don’t do it for attention, have no control over themselves, can’t articulate their needs, and often can’t calm down on their own. I didn’t realize how different the two were until my second son came along.

3. I don’t know how you do it. I couldn’t handle it, if it was me.

This is one of those well-meaning comments that really don’t help. Because, to be honest, I don’t know either, and you saying that to me just depresses me further. I’d take a “that sucks” over an “I don’t know” any day.

This goes for “I understand,” too. Even if you have a special needs child, you don’t actually understand what it is like to raise another person’s child. Instead, validate their feelings and listen without giving advice. One of the things that makes a big difference for me is when my friends “kidnap me” and get me out of the house. This isn’t always an option for some families, though.

4. Not saying anything at all.

Yes, people stare, and it’s not helpful. When my child is in the middle of a major meltdown, the last thing I need is to have half a dozen judgy moms staring at me. Like other special needs parents, I already feel alone and crappy as a parent. Having other moms watch in judgement just further isolates and depresses me. I know I am not alone in this feeling. What would I like for people to do instead? Pick up something if I drop it in the fray, hold open doors, invite my kid to your kid’s parties, etc.…

And while I’ve had some bad experiences in the past, I have also had good ones. Over the years, many cashiers have whispered encouraging words, and strangers have helped me get out to my car or offered me a friendly smile. I also have some amazing friends who help me navigate the rocky terrain of parenting a special needs child.

What are some ways that strangers and friends have helped you? And what are some of the hurtful things people have said to you or your child?

Why I (Sometimes) Hate Autism 

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.

Target Introduces Line of Sensory-Friendly Clothing

Target recently introduced sensory-friendly pieces to their Cat & Jack clothing line for kids. The clothing, which is only available on Target.com, features flat seams, one-dimensional designs, and heat-transferred labels in place of tags. Each piece is modelled on an existing Cat & Jack item, with those minor adjustments made to help make them more comfortable for kids who are specifically prone to skin discomfort.

Target designer Stacey Monsen helped come up with the idea of the sensory-friendly line — along with her colleagues — based on conversations with customers. Stacey’s seven-year-old daughter also has autism, and is not yet potty-trained, so she knows the challenge and frustration of finding appropriate clothing in her daughter’s size. She was also looking to create pieces that combine function with style.

Stacey and other Target designers formed a volunteer group to do research outside of their regular roles, and then presented the proposal to Target’s Product Design & Development (PD&D) team. Julie Guggemos, senior vice president of PD&D, said that the clothing idea: “…fit Target’s philosophy of making sure all guests feel welcome and included, and we knew Cat & Jack was the perfect place to start. While it’s just a few pieces in the line, for some families, they’ll make a huge difference.”

Stacey explained that they further developed the clothing by speaking with special needs parents and organizations. “We learned that sensory-friendly apparel can mean different things for different people. For these pieces, we decided to start with our core tees and leggings, and address guests’ most common requests—like removing tags and embellishments that can irritate the skin. We also added more ease through the hip and a higher rise in our leggings to fit with diapers, if needed, for older kids.”

There are currently 22 pieces in the special Cat & Jack line, in sizes 2T-5T for toddlers, and XS-XL for bigger kids. All are affordable, with each priced at $7 or less.

Target plans to continue introducing more adaptive clothing for those with all different types of special needs.

 

If I Could Grant Three Wishes for My Autistic Child

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.