The Big Little Sister

My son Brody is 5 years old. Cognitively, due to his autism and disabilities, he is around the age of 18 months to 2 years (or less, if you read the last assessment he had of this kind). My daughter Sydney is a neurotypical 2-year-old.

Both are very different. Both are very beautiful. And both are very much loved.

To Syd, Brody is Brody. She accepts him for who is he—her brother. And in a world where we really should just embrace differences and celebrate them, that is a beautiful thing. Because, sadly, this isn’t always the case.

When she was younger, I heard the phrase “big little sister/brother” thrown about by fellow parents of children with disabilities. And now she is a little older, I’ve begun to know exactly what they meant. Because a big little sister is exactly what Syd has become—and an awesome one at that.

The movie star, Sally Phillips, whose eldest son Ollie has Down syndrome, once said something that I love and can relate with:

“The siblings of special needs children are quite special. Absolutely accepting and totally loving, from birth, someone who is different mentally, and has a different way of seeing the world, is a wonderful trait. It’s a trait I wish there was another way of getting, but there isn’t. And it does involve a degree of not having it fantastically easy.”

Because you see, that’s exactly it. Being a big little sister is an amazing thing. But it can’t always be easy.

I imagine that there will be times when she wants to do things and we can’t.

I imagine that there will be times when she’ll see the world treat Brody differently and she’ll struggle to understand and will feel upset and angry.

I imagine that there will come a time why she wonders why they don’t go to the same school.

And I’m waiting for the day she asks why he doesn’t talk back or play with her quite the way a typical child would.

But let me tell you this.

I know that no child will ever “get” Brody more.

I know that no child will quite fight for him like she will.

And I know that no child will love him quite as much for who he is.

Her brother.

Brody.

Whilst she has taught him lots, he is teaching her too and he will help to shape who she becomes.

A caring and accepting person.

What a wonderful gift.

Asda Introduces ‘Helper’ Shopping List for Kids With Autism

Food shopping with kids in tow is typically not easy, and if those kids are prone to sensory overload or meltdowns, it’s all that much harder. Many supermarkets and grocery store chains have rolled out “quiet hours” in the last few years to help those with special needs shop in a less-challenging environment, but the hours don’t always coincide with times of day or days of the week that families can actually get out and shop.

Asda is one of those chains that trialed a “quiet hour,” but only in some of its stores. Now Asda is rolling out something new to all of its locations—Handy Little Helpers shopping lists.

The lists were designed by Jenny Barnett, an employee at Asda’s Middlesbrough store. Jenny’s five-year-old son, Charlie, has non-verbal autism, and his school uses symbols and pictures to help him communicate. This inspired Jenny to come up with grocery shopping lists that used symbols and pictures to keep children engaged while their parent or caretaker shopped with them.

The Middlesbrough location successfully trialed the Handy Little Helper lists, and Asda decided to stock them at all of their supercenters and superstores (more than 300 locations). Each store carries 10 of the reusable lists—which also feature a clip to secure them to the shopping cart—and they can be found at the Customer Service desk. Although they were originally designed for children with autism, anybody can use them.

As for Jenny, she’s absolutely thrilled that her idea will help other children like her son. “It’s such a nice feeling that I can walk into an Asda miles away from Middlesbrough and see another child benefitting from my idea—it’s going to help so many children, which is great.”

Autism Father and Filmmaker: An Interview with John Asher

No one can tell you the story of “A Boy Called Po” like John Asher can. While he’s the film’s director, producer, and editor, John also knows firsthand the complex dynamics of parenting an autistic child. Considering that he is the proud father of an autistic son, Evan, who is now 14, it is not surprising that John’s motivations behind the film run deeper than profit and box office success.

“I just wanted my movie to be authentic. I wanted the community to embrace this movie and put their stamp of approval on it. That’s what I care about the most.… I didn’t make the movie to make money. I made the movie to educate people more than anything. So, really, for me, I just want people to see it, and I don’t care how they see it. I just want them to see it.”

Hope Ahead

When I shared that I, too, have an autistic son, the famous director instantly stepped out from behind the camera and put on his Dad hat. “One of the things that we were fortunate about is that Evan was diagnosed when he was about two-and-a-half or three years old. Early diagnosis is key. I mean, look, there was a time when he was three years old, and I was like, I don’t know if he’s ever going to live by himself. I don’t know if he is going to get taken advantage of. And yet last week, Wednesday, was his first day of high school. No shadow, all by himself. And he’s in special ed classes. But he’s also into mainstream classes. He’s unbelievable. And he’s going to get a frickin’ driver’s license.”

John exuded pride for his son, but his tone remained solemn. He wasn’t gloating; he was comforting me. He was remembering that time of limbo. “I just want you to know—I’m telling you—you really have a lot to look forward to.” I was grateful for the handful of hope that he passed on to me.

Digesting a Diagnosis

Since I’d only recently received my son’s official diagnosis, I asked John about his introduction to autism. “I remember when my son was diagnosed. It was really interesting how it happened. We went to see a doctor at UCLA. He was just watching Evan in a room. He gave him a bunch of like miniature hazard cones, the little yellow cones, and Evan started stacking them up and making sure they were perfectly lined up. He put his eye up to the table and they were all actually perfectly spaced apart. I remember Jenny [John’s wife] saying, ‘Does my son have autism?’ and the doctor looked at her and said, ‘What do you think?’ She just burst into tears.”

While I firmly believe that the saying, “If you’ve met one person with autism, you’ve met one person with autism,” is true, I’m not so sure I can say the same about the parents of autistic children. I may not know John (or Jenny) personally, but I do know how they felt in that moment. I’ve seen my share of stacking and eye-tracking.

My heart went out to them both as I listened. In the movie, seeing Po’s father walk the same path that I clumsily navigate on a daily basis made me feel less alone as a special needs parent. The director had already succeeded in comforting me as a viewer. Now, in real life, he had done the same service for me as a parent.

Coping with Conflict

My interview questions now tossed aside, I confessed the challenges I’ve been facing as a newbie special needs mom. True to character, I began to overshare, telling John how autism affects so much more than our children—it affects our relationships, our marriages, our jobs, everything.

He knew. Of course, he knew. “A Boy Called Po” confronts practically every obstacle that I have faced as the mother of an autistic child. I wanted to know what personal aspects of fathering an autistic son he incorporated into his film.

John told me about a specific scene in which Christopher Gorham’s character, David, just loses it. I knew the scene; how could I forget it? I faced my own demons as I watched it; half of me wanting to protect Po, the other half filled with compassion and understanding for David and the frustration he felt. I asked John if he believes that the challenges are different for special needs fathers than they are for special needs mothers, and if so, how.

Clearly cognizant of the question’s controversial undertone, John continued to keep it real. “My opinion is that, sometimes, men feel the need to appear as if everything is okay. That it’s alright. Our job is to make our wives feel like, ‘look everything’s fine,’ right? I may have done that to a fault because I think that Jenny got frustrated, and she was like, you know, how can you say that everything is alright? I was positive, and look, everything is fine, but it’s bad. I mean, the divorce rate for autism parents is what, eighty-five percent, ninety percent?”

I replied that those statistics did not surprise me one bit and we both laughed. Looking back now, I’m not sure I can explain what exactly was funny in that moment.

The Marriage Toll

I confessed to John that my marriage was no stranger to conflicting coping mechanisms. If it weren’t for the countless messages I receive from fellow special needs moms who feel the exact same way, I’m not sure I’d be sharing about it here. But I know I’m not alone. So many women have shared with me that they feel as though their partners just don’t get it. They don’t see.

John quickly jumped in to clarify. “We do see it. We do see it. But look, a man would never tell you he is having a heart attack. He would sooner go in the bathroom and die quietly. We wouldn’t tell you, because we’re not designed that way.”

Of course, John and I both acknowledged that not all men operate this way. Yet, the fact remains that many marriages suffer as one parent remains positive, walking ahead with a spring in their step, while the other, lugging the heavy baggage of both their realities, struggles to keep up. Or so I’ve heard.

John stayed true to form, and continued to offer me his genuine support. “Can I give you one piece of advice? Communicate. When you go to sleep at night, it’s okay to say you’re scared. I wish I had said that to her more. I wish I admitted that I was scared, because there’s comfort in the other person. I just kept saying, everything’s going to be fine.”

Going It Alone

Perhaps it’s no coincidence that in “A Boy Called Po,” David also struggles to admit his powerlessness as the father of an autistic son. The film confronts the uniquely heavy burden that a special needs parent inherits when they lose their partner. Whether it is due to a loss like in the film, or the result of a divorce, I asked John how one person attempts to carry this weight alone.

“You know, I think my thing is to not lose hope. You think the world is crumbling around you, and you just don’t realize that you have this beautiful gift right in front of you, which is your child. And it’s not to give up on your child. Not to be scared.”

A Father First

Autism parent to autism parent, John talked with me far longer than I could have expected. This time the guy behind the camera is also the guy at occupational therapy. He knows the appointments and insurance policies. He knows the worrying and denial. He knows the fierce struggle and even fiercer bond. He might even know a little bit about your marriage.

We covered it all, and we were left with the same question that every conversation about autism ends with. What do we do about it? We already know we can’t change autism. But we can show people what it really looks like.

I asked John, as a father, how he hopes “A Boy Called Po” can effect change.

“I hope that the autism community watches this film so that they can show it to their not autistic or neurotypical friends and say, ‘If you want to come into my life, look at this movie.’ Because that’s really what it’s designed to do. The movie is entertaining. It’s magical. It makes you laugh; it makes you cry. That’s the design of it.

The design is toward the typical families. So that they can watch this movie and say, ‘Oh, that’s what my friend is going through!’ They look at us with these blank faces. They’re like, ‘Oh, that must be so hard. So sorry for you.’ They don’t know what we are going through. Take this film and show it to your friends. If you have autism in your life, show this film to your friends and they will understand what you are going through.”

———–

“A Boy Called Po” can be seen at select theaters near you, for a limited time. It is also available on iTunes.

For more on “A Boy Called Po,” visit Facebook or Twitter.

*A big thank you to John Asher, AutismAwareness.com, and Taylor Shannon of Prodigy Public Relations!

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.

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?

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.

My Child Is Different, and So Am I

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 depressionone 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.”