Autism: It Isn’t Always What You Think It Is 

We live in a world where image is everything. We seem to want to SEE much more than we want to read, listen or do. So much so, in fact, that more and more comments on my Facebook page are now animated images in the form of gifs rather than written comments. Pictures say much more than words can at times. 

That’s why I wanted to share this picture of my son.

This is a very typical, everyday image of him. It shows him struggling to do a simple action that others take for granted. It shows him physically struggling to move on from an everyday activity.

My son has great difficulty with transitions. He really struggles to move from one thing, one activity or one place, to another. In the photo, he could not climb out of the car and into the house because something was causing him huge stress. He stayed like this for almost an hour.

It is something people rarely talk about with autism.

When I see pictures of children with autism, there tend to be toys lined up or a child playing on their own or even (much to the upset of some) a child in meltdown. Memes and awareness materials talk of children having meltdowns because there are no chicken nuggets left, or asking shops to turn music down and dim the lights for an “autism friendly” event, and so on. What about the people with autism who can’t get out of the car to get into the fast food restaurant or the supermarket in the first place? 

The latter is much more my reality with autism.

We see people with autism portrayed on television as perhaps adults with fixations who talk about these fixations over and over again, much to the “amusement” of others. Sometimes we may even see autism portrayed as a child being excluded from school for bad behavior, or a family in the newspapers pleading that a certain food should be retained by a manufacturer because it is all that their child will eat. Meanwhile, my son with autism cannot speak a word, has to be carried into his school transport kicking and screaming, and would eat anything put in front of him (including inedible items too!).

The way that autism manifests in each individual is very different. There is no one size fits all. There is no “right” school for everyone with autism, and neither is there really any such thing as true autism-friendly events or clothing ranges. Why? Because what one person with autism hates, another may love. What one person with autism needs may be of no use at all to another person with autism.

So, what is my point? Autism is not what people think it is. There are so many things my son struggles with that people keep telling me “that’s not his autism” simply because it is not THEIR experience of autism. I have been corrected by so many well-meaning people over the years when I state that my son has severe autism and learning difficulties. People will argue with me that the fact he cannot count or read or write is unrelated to his autism. That’s because they have an idea what autism is and my son does not fit into that mould.

Which brings me right back to my photograph.

I live with a child who cannot go from one room in the house to another without screaming. He cannot leave the house without having to have a long list of objects with him, including his iPad. Getting in and out of a bath is a huge issue. Helping to change his pyjamas to clothes and vice versa involves me being attacked and screamed at. Not getting to sit on “his” seat is a disaster that takes weeks to recover from. Having the wrong thing on his breakfast plate is like starting a world war. Someone visiting is a trauma that we can never seem to manage to prepare him for. Unexpected gifts, the doorbell going, the phone ringing…they all cause him hysteria.

Everything is a huge struggle for my son. Dimming lights and turning off music is great for some, but he would never make it out the car anyway so it makes not one difference to my boy. Asking people to be more tolerant of a child in McDonald’s is great too, but I have long since learnt that the drive-through is all we will ever be able to manage.

I am not sure how people could really be more “aware” of people like my son. To be honest, we are housebound most days anyway, so people don’t see our autism.

Which is the reason I took this photo. And the reason that I am writing this.

I guess I just want people to realise that you can have as many autism-friendly Santas at Christmas as you want, but it still won’t help me or my son.

It would take him an hour to get out the house, another hour or more to get out of the car, and an incalculable amount of time before he would even enter a new building, let alone visit Santa.

Don’t stop being aware of others with autism. Don’t stop trying to be more inclusive. Just please remember there are some with autism who struggle with even the very basics in life. There are some with autism who can’t even leave the house. Just because you won’t ever likely see it doesn’t mean my son’s autism doesn’t exist.

Why It’s Actually Not Selfish to Take a Holiday

A long time ago, when my views on life were less complex and everything fit into a box, I was horrified to hear that parents went away without their children. After all, why on earth have children if you are going to continue with your life pre-children and not involve them in absolutely everything?

That was before a divorce and before autism entered our lives. That was before I realised the struggles that people have in this generation; juggling work, relationships and parenting. That was when my narrow-minded views allowed me to judge other people’s lives without truly understanding much about mental health.

Being a divorcee with a child means that I’m afforded time without my son. Initially, it meant I could work a night shift without exploring other avenues for childcare, but I never really got any downtime. That period ran simultaneously alongside a diagnosis of autism, and I’m not going to flower it up–it was bloody hard. I spent days running on empty, managing night shifts and a child with a variety of needs. Seemingly, sleep wasn’t one of them. Social media forced me to believe that I needed to be everything to everyone and the child comes first. Without question, my son is at the forefront of my mind just about every waking and sleeping hour, but I neglected myself and my own well-being and that inevitably impacted my ability to parent Joseph effectively.

It was a hard lesson to learn, but I have tried to correct that. I have made time for myself and other people, and allowed myself not to feel guilty for unashamedly being me in my own right and not just Joseph’s Mum.

Over time, I have managed my and Joseph’s time together more effectively, and taken advantage of the time he has with his dad. There has to be some benefits of a divorce, right? I have nights where I do all the things I haven’t been able to when Joseph’s around. I have nights where I do very little and take myself off to bed early to catch up on some much-needed sleep.

But there are also times when Joseph is with his dad for a couple of nights together, or he takes him on holiday for a week, and that’s when I put my heart and soul into planning “me time” or time for my current relationship. I tie myself in knots deciding what I want to do. Do I want to do 32 things in two days or do I want to just relax in the sun and chill? I want it all, obviously.

So when I hear the words “you’re lucky to get time away,” it saddens me. I don’t consider myself particularly unlucky, but I know what it has taken to ensure this time happens and the planning involved to make it run smoothly for all of us. I know what I deal with every day as a parent of a child with additional needs and would consider the words a poor choice.

I’m well aware of parents–not just parents of children with additional needs–who do not get that respite and I know that may be for a variety of reasons: choice, nobody to assist or guilt. Society expects so much from us and we place too many expectations on ourselves.

It’s not easy to shut off when you are away, as you naturally worry for that child who you PA for, not just provide personal care and wonder whether anyone else can do it to the same standards. What I’ve found is, they actually can. How does Joseph cope? Marvellously, and he looks forward to his “holiday” time too, which removes some of the guilt and gives me assurance that he is not totally reliant on me. When I return, do I get a massive hug and him telling me that he has missed me? Absolutely not, he treats me like he saw me the day before in his usual offhand manner!

So whilst I have the opportunity, long may this continue. I don’t need to justify myself or feel that I’m lucky, but I would like people to read this and feel empowered to do the same.

I’m Thankful for the Good Days

Pulling into Leo’s school today for morning dropoff, I cautiously peered into my rearview mirror, surveying Leo’s expression. Last week was one of those exceedingly challenging ones for my boy, across all environments: school, home, therapy…

Relief swept over me this past weekend as I’d noticed a transformation back to the joyful boy that I know. I was hoping beyond all measure that this positive swing would transfer to school as well.

Leo appeared calm as I parked, emitting some familiar “coos,” which are generally a sign he is at ease with the situation. His teacher approached our car while I unbuckled him from his seat.

“Come on, baby,” I coaxed, guiding Leo outside, and placing his bookbag onto his shoulders.

“Leo, you’re wearing your Dory shirt!” His teacher sweetly commented.

He smiled, taking her hand and allowing me a kiss before they walked away. I sat in the car for a few moments, watching as they approached the building, stopping along the way so they could work on his greetings.

With prompting, he waved “hi” to another teacher…a classmate. He seemed okay, as I looked on, even after they were out of sight…and holding my breath while I drove away…

When the overwhelmingly challenging days occur for my boy, and string together for any length of time, it feels as if I’m in a constant state of trying to put out the fires…or at the very least contain them.

The question of “why” he’s having such a hard time is not always crystal clear. In fact, there is almost always some level of mystery, or uncertainty surrounding what is causing the new behaviors, added challenges, etc…

I arrived at his school a little earlier than usual this afternoon, eagerly awaiting dismissal.

Leo exited the building holding his teacher’s hand, just as he had when I left him this morning. And as I neared him, I knelt down, kissing his cheek as I had this morning…

“He had a good day.” His teacher spoke, soft yet reassuringly, perhaps aware of my brewing anxiety.

And I exhaled fully for what felt like the first time all day, grateful for this “good day” for my boy, grateful for a teacher who works tirelessly to help him through the difficult days.

There will be more of those to come, of course…

But for tonight, I’m going to (try) to let the worry go.

Because today… Today was a good day.

How Cinderella Made My Autistic Daughter Feel Like a Princess

Birthdays are supposed to be fun and exciting for little kids. I know my six-year-old daughter, Anna, is already planning her next birthday party and theme, and it’s only the night after her sixth party ended…she’s that excited!

Birthdays were always so exciting and fun for me too; so much so that I would have my girls’ parties planned, right down to the decorations, months before the party.

That changed for me a month before my youngest daughter, Zoey, turned 2. That was when she was diagnosed with severe non-verbal autism, global developmental delay, and dyspraxia of speech. She would soon also be diagnosed with extreme ADHD.

I tried to pull myself together enough to plan her birthday party, and do it just like I had done her first birthday party and all six of her older sister’s birthday parties. Her second birthday didn’t go as planned, and I would eventually realize that none of her birthdays would go as planned ever again. I tried though; each year I tried.

Her third birthday party was too loud and sensory overload took over—she couldn’t blow out her candles, and we didn’t sing “Happy Birthday” because she started to cover her ears from the noise. I took some flak from some family members because we didn’t sing the “Happy Birthday” song, but I did what was best for my child and will continue to always do so.

Zoey’s fourth birthday was a beautiful, sunny day, and I invited just small a group of family and friends for an ice cream social. Ice cream is her favorite, so I thought, “why not build-your-own sundaes?”

She saw everyone gathered around and immediately came over to me to escape the small crowd. I knew it was too much; she wasn’t comfortable. She motioned for the two of us to go inside, and I granted her that. After all, it was HER day. While our friends and family gathered outside eating cake and ice cream sundaes, Zoey and I played with some of the very cool sensory toys that she had gotten as gifts.

Being social is very difficult for Zoey. If we have company, she usually retreats to her sensory room for a “break” and I respect her wishes every time.

I had no idea what I was going to do this year for her fifth birthday. I know that 5 is a milestone birthday and, thanks to school and therapy, she had come a long way from years past.

I noticed she was listening to the original Cinderella cartoon songs on her tablet. She would sing along with Cinderella to the song, “Sweet Nightingale,” and watching her sing was beautiful. Soon, she started watching the cartoon and she never shut the TV off, which she usually does—she was actually enjoying it and captivated by it! It made my heart happy to see her enjoy something. Zoey liked Cinderella.

I did some research and found Precious Parties by Kayla, which does Princess Parties. I got in contact with Kayla and asked if she would come visit Zoey on her birthday, explaining that she has autism and got overwhelmed easily. We booked her: Cinderella was coming to Zoey’s fifth birthday.

Cinderella arrived not long after our guests. All the other children squealed with excitement when Cinderella sat down and gathered the children around her to show them a treasure chest full of trinkets and fairy wings. Then she pulled out a Cinderella book, looked right at Zoey, and pointed to Cinderella on the cover and then at herself. Zoey said, “Cerella.”

Zoey knew that Cinderella was here at our house. It was overwhelming for her and she took many breaks. Cinderella did face painting on all the other kids while Zoey sat on the couch, having me give her deep compression (squeezes) on her legs. My husband came over to us and said, “Cinderella is here for you, baby girl.” Zoey kept taking my hands to do deep compression on her legs, as I looked up at my husband and said, “We tried, we tried.”

Zoey was definitely intrigued by this beautiful Cinderella at our house, and she actually went up and approached her three times. I was moved and close to tears, because no matter what Cinderella was doing—face painting a child, answering a question, whatever it was she was doing—she stopped every time Zoey approached her, and she treated her like the special little princess that she is. That meant everything to me.

We brought out the cake and we sang “Happy Birthday” to Zoey, and it was the first year that she blew out her candles. Cinderella cut her cake, took pictures, signed autographs, and then said her goodbyes, and off she left on her way back to Prince Charming.

Thank you, Cinderella, for making THIS birthday special for my special girl. It went exactly how I had planned.

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.

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.

Autism and Behavior: Am I Making Allowances or Excuses?

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.

On the Days That I Break

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.

Three Things I Am Tired of Explaining About Autism

Not again, I thought to myself. 

Did they just really ask me this? Here I go again, I said to myself with a plastered smile on my face, trying to hide how cranky their comments made me. I know exactly why they ask such questions or say the kind of comments that they do. It’s simply because they can’t understand my child’s behavior and why we do the things that we do.

Being an advocate can be very monotonous. At times, I feel like I explain the same things repeatedly. And even after I go into great detail, I get the same baffled looks. It leaves me exhausted, irritated, stressed and angry. It’s exhausting having to repeatedly explain your child to people. I often leave a situation all calm and collected, and then release my built-up frustrations later. After all, a person can only explain something so many times without getting a little grumpy.

Are you wondering what I get asked about my son’s behaviors? My list is somewhat lengthy, but here are the top three things that I am tired of explaining.

1. Every child with autism is different.

There is not one family who has the same journey. So, please stop making comparisons among children with autism. I often find myself in a conversation and the person will say something like, “Well, I knew a woman who had a nephew with autism and he just started talking when he was four. So, your son will too.” Or something like, “A kid who has autism and lives across the street from me was put on a special diet by his parents and now he is just fine. I bet if you try that, Trenton will be too.”

UGH! Nothing can be more frustrating than trying to explain to people that what works for one child/adult with autism will not necessarily work for everyone. When I explain that I tried what they just mentioned and it didn’t help my son, I get the most confused/blank look back.

“How can that be?”

“It’s just autism,” I say, and I leave it at that.

Inside, I am screaming and angry and feel judged. I often feel like they don’t believe me when I say that I have tried and done almost everything, but my son isn’t like the person they know. It’s autism, folks! No one is the same and not one story is the same!

2. Yes, he does look ‘normal.’ Looks aren’t everything.

I know, I know! I hear this one a lot. My child is handsome and adorable, and has the cutest smile in the world. Therefore, he looks “normal” to strangers—it appears that there is absolutely nothing different about him. However, don’t let his looks dictate to you whether he has challenges.

He has many mountains to climb daily, and always will. My life has been forever changed because of his challenges. He may look like the boy next door, but we definitely walk to the beat of our own drum in this house, and we always will.

3. He’s got sensory issues.

Trying to explain the sensory problems that accompany my son’s autism is one of the hardest things to do. “Oh, your son can’t brush his teeth? But, why?” People look at me, expressionless, trying to grasp how a child who looks “normal” can’t brush his teeth because of sensory problems. I always go further, too, explaining that nail trimming and haircuts are impossible unless my son is asleep or held down. The look on their faces when they hear that is priceless!

It is hard to manage not only these types of conversations about autism, but many others as well. I do my best to get through them pleasantly while I am dying a little on the inside. Just when I think that I won’t have to engage in another tedious conversation explaining my son to someone, I find myself right back in the same exact conversation, but with a different person. It’s exhausting.

An Autism Mom’s Feelings About Grief

“You can’t stop the tide.”

I told my autistic son this during his first trip to the ocean. The vastness of the water frightened him and so, in his own way, he sought to control it by holding out his little hands and bravely shouting at the waves to stop. We’ve all been there, struggling to get our footing when the riptide moments of life threaten to pull us under.

Never is this truer than when someone you love is dying. This summer, my family is preparing to say goodbye to my father-in-law, the kindest and most hardworking man I’ve ever known. Over the last few days I’ve worried about and watched my sweet boy struggle once more to stop the tide. Except this time it’s the vastness of his emotions that frightens him.

People with autism are so often portrayed as lacking emotions. But my boy is often flooded with them, to the point that he nearly drowns. When this happens I wade through the murky depths of his feelings and try to help him stay afloat. This isn’t easy these days since half the time I feel like I’m drowning, too.

Grieving with a special needs child, like anything else, seems so much harder. The meltdowns, the overstimulation, and the judgmental stares of strangers heighten the moment. Add to that the common struggle of helping your child make sense of something that you yourself don’t understand. I wish I could impart some kind of wisdom to other parents out there that, like me, are treading water in the sea of grief, but I sadly don’t have any answers.

Instead, I want you to know you’re not alone. In the chaos it’s easy to feel isolated. All the things that make your child’s day easier—staying on schedule, eating healthy meals, and having a routine—are nearly impossible in these situations. It’s easy to panic and flail as you frantically try and get some semblance of control over your universe.

It’s OK if you stumble and fall along the way. Saying goodbye is hard and it should be. But it’s important to remember that when you struggle for control, you risk drowning. It’s only when you lay back, trust the water, and float that the tide brings you safely back to shore.