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.

Rachel L. MacAulay

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

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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.

K.M. Hodge

The Top 10 Things the Best Teachers Do

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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.

K.M. Hodge

What Not to Say to a Special Needs Parent

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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?

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.

Rachel L. MacAulay

Target Introduces Line of Sensory-Friendly Clothing

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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.

 

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.

Melissa Cote

My Child Is Different, and So Am I

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My child is amazing—truly freaking amazing. She is everything that I want to be. 

 When I’m tired and I think that I can’t possibly push through even one more day, I look at her progress and I force myself to push on through. On days when I feel like I can’t even get out of my own bed because of depression, Zoey mentally pulls me out. I struggle with major depressive disorder, anxiety, panic disorder, complex PTSD, and fibromyalgia, but I can’t just stay in bed—I’m a mom! 

One day in August, three years ago, my husband and I drove two hours away to have a specialist confirm what we had already suspected…autism had chosen our child.

Getting any kind of diagnosis is a shock and nothing prepares you for it. If you think you are prepared, well that preparation crumbles in the wake of a specialist looking at you and telling you that there’s something wrong. 

When it comes to your child, the last thing you want to hear is that there is something wrong. You don’t want to be handed pamphlets and told to find a support group. They looked at us and asked us, “Do you understand what we just went over with you?” We shook our heads “yes,” but we were obviously in shock, because we couldn’t possibly understand what we were in for. 

We were then escorted out the door and shown where to get the elevator. In that elevator, I looked up at my husband, who was holding onto our almost two-year-old daughter, and I asked him: “What do we do? What happens now?”

He replied, “It changes nothing. She’s still our happy child.” 

I tried to accept that and believe him as he said it to me, but the diagnosis did change everything for me. I stayed up every night researching, blaming myself, even blaming my own illnesses, what had I done wrong. I cried, sobbed, grieved. I got angry, and I spiraled into another bout of major depression—one of many in my life. 

These emotions of sadness, fear, and anger, well, they lasted for more than a year for me. Even on the days that I had thought I had settled with those emotions, they came back looking for more from me. It was a vicious, emotional cycle of tug of war that I was really tired of fighting, and I realized that I needed help.

So, I started seeing a therapist. Soon I stopped fighting those emotions and instead released them. I stopped blaming autism for choosing my child and I stopped the love/hate relationship that I unknowingly had with autism. 

I realized I was discriminating against autism—not my child, but her autism. I was treating autism wrong and making it into something scary… Why, because autism is different? I’m different; we are all different. 

What’s more, I learned that by talking about my daughter’s autism, it made it feel okay for me to talk about my mental illnesses. I realized different can be scary and we can be afraid of the unknown, but everything and everyone deserves a chance to show you just how beautiful different can be. I tell my children that just because someone or something is different, “Different isn’t bad.”

Zoey’s autism saved my life! I know it sounds silly, but it’s true… Autism saved MY life. 

If not for Zoey’s autism, I never would have woken up and embraced my own illnesses. I wouldn’t be the mom I am today; not just for my kids, but as a person. I became Zoey’s voice when she had none, her advocate when she needed one, and always her mommy who loves her. 

In being Zoey’s voice, I found my own voice. In helping to fight for Zoey’s needs, I learned to fight for my own needs. Getting Zoey’s autism diagnosis helped me understand my own diagnoses. Something inside me woke up and I realized autism doesn’t discriminate and that no one should discriminate. By talking and sharing, maybe we can end the stigma surrounding “differences.”