The Worries of an Autism Parent: Different Not More

Yesterday,  a fellow special needs mother, whose son was recently diagnosed with autism spectrum disorder, asked me a question. She asked me if there will ever be a day when she won’t worry. I attempted repeatedly to respond to this question, typing then erasing, typing then erasing. I didn’t know the answer. Who am I to say or know anything about anything? But I especially did not know this. This question has haunted me for the last 24 hours.

I don’t know. I don’t know if there will ever be a day that she won’t worry. The infinite, multiplying questions that come with an autism diagnosis are like rivers that part into dozens of streams that eventually lead only to an ocean of uncertainty. I don’t know. There is so much that I just do not know.

While I do know that my son is incredibly smart, I also know that there is a possibility that he will never be able to fully convey this intelligence to the world. What if he can’t connect with others the way that he can with me? What if he is bullied, taken advantage of, made into a spectacle?

What if he can never ask a girl to a dance, or tell a woman he loves her, or get married, or have children, grandchildren? What if something happens to me? What if it gets worse instead of better? What if I lose him again to another year of regression? What if he doesn’t come back this time? What if he never finds the words that are on the tip of his tongue? What if they stay there forever?

While autism comes with many questions, concerns, and challenges, it also comes with a bold and beautiful silver lining. Autism knows no cynicism, judgement, or cruelty. It knows no greed.

In the same way that my son doesn’t always understand questions, I know that he does not know malice. While my son may face bullying in his lifetime, I can say with confidence that he will never be a bully. While he may not be able to communicate with others as deeply as he does with me, we share a bond that much stronger because of it.

For every word he cannot find, there is a look he gives me that I wouldn’t trade for the dictionary. He may not respond to “I love you,” or give kisses on demand, but when I do get a kiss from him, there is not a kiss more genuine in this entire world. We face daily frustrations trying to communicate with one another, but after the confusion settles, and I am finally able to interpret his request, the look in his eyes is one you will see nowhere else. It is one of pure connection, gratitude, and contentedness.

While it may be difficult for me to explain to him concepts like time, for example, such as waiting for dessert or being patient through commercials, he knows a presence that I will never know. He knows the present moment in a way that we all should envy. While I may have to worry about him having a future career or marriage, I highly doubt that I have to worry about him embezzling, having affairs, or fighting with his brother over their inheritance. I may have to worry about the way the world treats him, but I do not have an ounce of concern over how he will treat the world.

There is an irony that come with autism. It is as if the gene that aids in communication, speech, and sensory intake lends itself to more important and fundamental human features. Just as our hands and feet get cold when our bodies choose to keep our blood closest to our most vital organs as a means of survival, it is as if autism chooses to pool its energy into the most valuable and moral aspects of humanity, while willingly sacrificing the priorities of the neurotypical brain.

In other words, what is important to us as a culture is not necessarily that which is most valuable to our species. Society looks at autism and sees a deficit, when in reality the real deficit is in our own neurotypical thinking. It is typical for parents to worry over their child’s future career and marriage, rather than staying up late, tossing and turning over their child’s future character and moral fiber.

While I still don’t know if there will ever be a day that this fellow special needs mom does not worry, I would bet that there will be a day when she cries tears of joy over a miraculously met milestone that she never thought she’d see, while on that very same day a different mother will cry tears of disappointment over her neurotypical child’s deceit or corruption. The point is, life is a trade-off. None of us are spared the worry we feel over our children and their futures.

The satisfaction found in parenting is not driven by college degrees and six-figure salaries. I know firsthand that those things do not bring happiness. As a parent, adjusting to an autism diagnosis means adjusting our expectations of what truly matters in this life, and aligning them with what is, perhaps, a more altruistic perspective. So while our children often need help adjusting to the world they live in, so do we. We also must adapt our conditioned brains into recognizing what is truly worth worrying over at the end of the day.

The satisfaction found in parenting any child is found in the pride we feel when we see our children do the right thing, tell the truth, help another person, accept others, and just love us back unconditionally. Today, I am not worried for my son in any of these areas; he shows me every day how to be a better human being. And while my neurotypical brain has convinced me over the years that things like eye contact and sarcasm matter, my heart tells me that character and authenticity are what really count in this lifetime, and if that’s the case, I’ve got a lot less to worry about than most people.

So, to try and answer my fellow special needs mom’s question, there are many things I still do not know, and a corresponding worry for each unknown variable in our life’s equation. I will probably worry about my autistic son every day for the rest of my life, just as I will for my neurotypical son. What I do know is that my worries are no more or less than those of any neurotypical parent. Allistic or autistic, that’s being a parent. The worries are merely different. And if our children have anything to teach us, it’s that “different” can be so much better than anything we ever could have planned for.

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.

Life Through a Different Window

Life is tough, but we’re tougher.

Having two children before the age of 21 was never the plan, but a great shift in life regardless. Raising these little humans hasn’t been easy and even though there are times when pulling my hair out seems like a great idea, I wouldn’t change this life for anything. Just when I thought having not one, but TWO kids was hard enough, the news of my oldest child being diagnosed with Autism Spectrum Disorder turned my world upside down.

I believe there are stages that a parent goes through when presented with a job like this. The term “job” may seem odd, but when I’m done explaining you’ll understand. Back to the stages.

First, I felt Guilt. I asked myself the same question over and over, “What could I have done differently?” But the truth is, there is nothing I could have done to change the outcome. The pain I felt for my child was overwhelming. I researched any possible reason as to why this could have happened, from the depression I had during my pregnancy, to maybe him watching too much television. I read that Autism is a chemical imbalance in the brain, meaning different areas of the brain send different signals than that of a “normal” brain. There’s not enough research to determine why this happens, but there’s enough to know that the change in the brain occurs most likely during pregnancy (when the cerebral cortex is forming), which of course, did not ease my mind. Basically, I blamed myself. I felt like if I did one thing differently, like changed the food I ate (silly, I know), maybe he wouldn’t have this disorder.

Soon, I would come to realize that blaming myself wasn’t the answer, which lead me to the next stage I experienced — Acceptance. This did not happen overnight. It took weeks of reading articles and other parents’ testimonials to accept the diagnosis. I got involved in organizations such as: Ausitm Speaks, Autism Society of America, and National Autism Association. I became like a “walking facts sheet.” I didn’t know a single thing about ASD, but it had quickly become a part of my world so I figured I needed to start learning. Get ready because I’m about to give a lot of information.

Something that was immediately brought to my attention upon opening my internet browser, was that ASD now affects 1 in 68 children and 1 in 42 boys. So not only is Autism a growing condition in the world, but can be found mostly in males. Also, specialists now believe that this condition forms because of the individual’s genetic makeup. If someone has family members with Autism, then it is most likely to be passed down. I found this odd because my son had been the first to be diagnosed with ASD in the family on my side and on his father’s side. I may never know how Autism found its way into my life, but it was a part of my son and therefore a part of me. A fact I discovered over time was that ASD varies from person to person, meaning that no two people with it are alike. Autism is a SPECTRUM.

Example: One child with ASD could excell in Mathematics while the other has poor skills in Math, but excels in Art. This is a simple example, but it can be expanded nonetheless.

The differences between individuals with Autism are on a rather massive scale. ASD affects areas of the brain that control social interaction, so these individuals may feel that interacting with others can be quite uncomfortable. Many children with this disorder would rather be alone in their own little world because that’s where they can truly be themselves.

ASD also affects communication skills. Some can speak rather well while others may remain mute their entire lives. Repetition of phrases or actions is common in a child with Autism. There are many phrases my son will repeat, most of which I do not understand, but I do my best to try and communicate back with him. Some actions he repeats are lining up his toys (cars, blocks). I think he finds comfort in doing so and it amazes me the complete focus he has when doing these activities.

ASD affects cognitive function, as well. Cognitive function has to do with your brain’s way of thinking, reasoning, remembering, and perception. Many children with Autism have difficulties in these areas, but that does not necessarily have to do with intelligence.

Sensory processing (texture, smells, or visual) is another area that Autism can affect. It’s hard to find foods for my son to eat because of certain textures. So the art of “sneaking” things into the few foods he does enjoy has become the norm during meal time. Another example is that he doesn’t like condensation on the outside of a glass, or cup. I have ways of compromising, of course, so this isn’t a major issue.

These are just some examples of how ASD has affected my son in a specific way. The same can’t be said for other individuals with Autism. Like I said before, Autism is a SPECTRUM, so while one child may have issues with certain areas another could have no problems at all. This is another reason why you cannot approach ASD in a “single-minded” manner. Yes, there are similarities in children with this disorder, but it is foolish to think they are all the same. While researching any chance I could helped me cope in some way, it also showed me that in the world of being an “Autism Parent” — I was not alone.

After accepting my child for who he was and cramming as much information as I could, I moved on to being Scared. Not for myself, but for him. I was scared for the day some ignorant person would treat this innocent soul with hate for being different. So I immediately became an advocate for this tiny human being — his VOICE, if you will. In a world where society can be cruel to things different than the norm, and ignorance has a face of many, my son needed that voice.

This is why “job” is an appropriate term for being an Ausitm Parent. It’s my job because not only am I an advocate for my son, but I’m also his teacher, therapist, and specialist. I will witness many milestones, or should I say miracles. I will educate him to love himself just the way he is. I will become a specialist in the Autism world because I have a front row seat allowing me to witness what this word actually means. One thing that I realized is that “Autism” is just a word. It does not define my child’s capabilities, strengths, or challenges. It does not choose what he will accomplish in his life. I am there to help him realize that he can do anything he sets his mind to. What the word shows is that just because he has a disability doesn’t mean he isn’t smart, or doesn’t have feelings, if not more, just like everyone else. It shows that he is simply different and that “normal” is just another word.

I think I’ll always be in the Scared stage of this journey. The fears I have as a mother will only ease as he grows and surpasses the challenges that life throws at him. There will always be ignorance, but that’s where the Advocate comes in. Not only will I be teaching him, but I will educate others, as well. Most people are born to know what normal is so when they see someone who isn’t just like them, it can be an odd experience.

For example: When my family goes out in public, my children look just like any other child, but the difference is that my son can hear things we can’t, see things we can’t, and react to these things in ways we wouldn’t normally. Lights, sounds, smells, and even too many people can set off a meltdown. What is a meltdown? It is not to be confused with a temper tantrum. A meltdown is “an intense response to overwhelming situations.” It happens when someone becomes completely overwhelmed by their current situation and temporarily loses behavioural control. This loss of control can be expressed verbally (shouting, screaming, crying), physically (kicking, lashing out, biting) or in both ways. Seems like a lot to take in, right? Well, when someone isn’t familiar with what Autism is, their reaction to the situation is usually unpleasant. It’s hard to not let the rude looks and whispered remarks get to you. Most people just see a child misbehaving, so it’s my job to educate those willing to listen that Autism does not have a specific face. A “normal” looking child crying in the middle of the store and covering their ears may have a disability, so it’s important to never immediately judge the situation if you find yourself in one like this.

I have had many tell me that my child just needs to have a good ole-fashioned whipping, or that he needs to learn to “act right.” These are only a few things that you will hear from others. One thing I’ve learned is to NEVER take what individuals say to heart because they are ignorant to a situation. What people don’t see is my son struggling to learn things other kids have already learned ages ago, or the unconditional love he has for everyone around him. They don’t see the tears he cries because he can’t communicate and it frustrates him, or the countless hours of therapy he has gone through just to learn speech or motor skills that comes naturally to us. No one sees the tears you shed as a parent because of the times you’ve tried everything to calm your child during a meltdown, but nothing works. They don’t understand why you jump for joy because your child said a simple word that you’ve been trying to get them to say for weeks in therapy, or when they put their first puzzle together. I don’t expect people to want to know these things about my son, or my life, but there will be those who step in and want to learn and help. Cherish those individuals. When they walk away with knowledge of something barely talked about, then you’ve done your job.

This journey does not just include yourself and your autistic child. It also involves your family. For me, that especially includes my daughter. She is too young to understand right now, but one day she’ll ask why her brother acts differently than herself and their peers. A good Rule of Thumb for explaining Autism and other disabilities to young children: Do it early and do it often! It’s important to give appropriate information for a certain age, so as she grows the information I share with her about Autism will also grow.

But I know it won’t be easy for her, or for myself. A stuggle I will have as a mother is knowing the demands she will face in her life. She will experience things that no other sibling will have to. She will see first-hand the meltdowns (which may frighten her) and the attention her brother requires to get through the day. Though I can only hope she sees that I truly try to dedicate my time and attention equally to both her and her brother, I also try to give my daughter her own special time. Again, she’s too young to understand, but she will one day and it is essential to give some of my time specifically to her. Even if it’s just giving her extra hugs and kisses at night. My daughter is a special individual who is unbelievably smart. She shows so much love to her sibling, and I know she will be raised to treat others with kindness and respect because of the situation she was born into. I cannot wait to see the amazing things she will do in her life with the knowledge she will aquire over time. As an older sibling of two younger brothers, I felt compelled to protect them, but with my daughter I think she will feel the need to protect her older brother. This is not her job, nor will I raise her to believe that it is, but I’m hoping that being a sibling of Autism, she will know to do the right thing and help others when they need it most. Not only am I raising my son to be the best person I know he can be, but I’m also doing the same for my daughter and so far it’s been an unbelievable experience.

I’ve come to realize that being an Autism Mom is a blessing. I don’t know why I was chosen to be this special little boy’s mother, or have an amazing, beautiful daughter. I like to believe that I was picked for this because I’m strong enough even when I feel weak. Not only do I get to raise these children, but I’m responsible for molding and shaping their minds to understand things most parents don’t get an opportunity to teach their kids. The days can be hard and some days will be harder than others. Some are filled with miracles. The advice I give to those who find themselves in a similar situation is that even though you will feel like you can’t do it sometimes, IT IS WORTH IT AND IT WILL BE OKAY. When your child says their first word at the age of three, sings their first song, makes a friend, or surpasses that milestone(s) they’ve been working so hard to overcome, you will know what a miracle looks like. The love your child will experience from those who want to understand, or dedicate their lives to teaching children like him/her, is a miracle. The smallest act of kindess from a stranger who has the slightest thought that this child is a miracle.

The last stage you’ll feel is Thankfulness. You’ll be thankful for being blessed with such a beautiful child. I’m thankful everyday that I get to shape this little mind, experience the challenges with him, and watch him grow into a remarkable adult. I am my son’s biggest fan and greatest supporter. Not only am I those things for him, but I strive to be a great example for my daughter as well. I put a lot of pressure on myself to be what both of my children need. They both require different things, but one thing that is equal between the two is the love I have for them. Being an Autism Family is hard, but the love and support that comes from it is easy. I want my babies to be proud of their mother and to be proud of themselves. I want everyone I come in contact with to see that yes, things are tough, but we’re tougher. This is the life I see through my window, and I wouldn’t change my view for anything.

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.

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.


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.

How I See Myself in You

For seven years, I have watched you grow and your personality unfold. Before you arrived, I wondered what life with you would be like. After you arrived, I knew that life was different but didn’t realise how much I would learn from you. Through you, I have learnt what it means to be a mother, understood more about the person I want to be, and discovered new things about who I am.

I love your curiosity and independence, which were both evident from an early age. When faced with a challenge, you will always find a way to get around it. At 2, you used the filing box to help you reach the desktop and use the computer. At 4, you took Dad’s photo on his phone and tried to use it to access the Xbox using the facial recognition login. Recently, you almost worked out the iPad pin code after you set Dad a quiz about everything—from his birthday and favourite colour to his parents’ birth dates.

Like you, I enjoy the challenge of working things out and finding answers. Puzzle solving is a big part of my job. There is nothing more exciting than a problem to be solved, even if it does take a while. When faced with a challenge I can become wrapped up in it for hours and days, oblivious to the world around me until I have completed the task. This is so similar to the way you can get lost in a world of your own and spend hours working on your Lego masterpieces.

Life is the biggest puzzle facing us both, as we attempt to navigate through the twists and turns of what can often be a confusing world.

School turned out to be a bit of a surprise for us all. The demands of lessons and lunchtimes were overwhelming, and you often clashed with your classmates. As your refusal to participate in lessons and emotional outbursts increased, we realised that you couldn’t cope. Your anxiety was at an all-time high, and our hearts broke to see you struggle so much when we didn’t know how to help you.

While you struggled at school, I struggled at work. I have often been called out for being challenging, abrasive, inflexible, or inconsiderate of others. The reason is that I also struggle when there is uncertainty, an unexpected change, or when everyone has a different view about how to get things done. I don’t mean to be difficult—I just want to make sure that I get the job done on time to a high standard, and it sometimes takes me a while to get my head around different points of view. After years of conflict, and many unsuccessful attempts to change, my own anxiety has rocketed as I struggle to be the person they wanted me to be and take the next step in my career.

Things have started to change for us, as you have found the support you need at school and I am learning how to bring about the changes I need at work.

Even with these changes, life can be pretty exhausting at times. It is not always easy dealing with things that are beyond your control or don’t make sense. I have learnt to tell when things are getting too much for you—your voice becomes louder, your actions and language become repetitive and restricted, and your mood becomes more volatile. Signs that you could be headed for a meltdown and need some downtime, distraction, or support to allow you the time and space to deal with things before they get too much to cope with.

I understand how you feel. I often have moments when it all gets too much for me, too. Times when I need to work hard to keep things together, struggle to cope with even the simplest of demands, and need to escape. In supporting you, I have learnt how to identify my own triggers and manage my own stress levels without feeling guilty about the need to take some time out for me.

Together we are learning about self-regulation, and how to keep ourselves on a more even keel.

At night, I love to watch you sleeping, tightly wrapped up in your duvet cocoon. I think about the joy that you bring into my world. How you love to share your knowledge of facts with anyone who will listen, and enjoy using big words and quirky phrases you have heard. How you see life from a different perspective to most people and take great happiness from simple pleasures. How you always say exactly what you are thinking and don’t worry about what other people think.  How loyal you are to the people you have connected with, and how much you enjoy making people laugh.

As I watch you, I think about your spirit and approach to life and how similar it is to my own. We are different. We are the same. Reflections of each other, moving through life along intertwined paths.

Through watching and understanding you, I have discovered that I, too, have autism. In you, I see me and a future where we both can find our place in the world. A world where our differences are celebrated and our struggles are understood.

The Day I Lost My Autistic Child at the Mall

What sort of mother loses her own child?

What sort of mother loses her non-verbal autistic child in a shopping center on a busy Saturday afternoon?

This mother.

It was all a big misunderstanding. I had to take my other child to the bathroom, so I told the other adult with me where I was going and where I would meet him. He either never heard me or never understood, and I never thought to check as I had to get my other child to the bathroom quickly. In hindsight, I should have checked.

I dealt with the other child and made my way to the agreed meet-up place. Before we even got there, I could tell something wasn’t right. I heard screaming and crying and there were crowds at the doorway of the store I was going to. Mother’s intuition hit me right there. I had that horrible feeling in the pit of my stomach that somehow this was about my son.

I know my son’s scream and those were HIS screams I was hearing. He had someone with him though, right? Except the closer to the noise I got, the better I could see my child lashing out and attacking — through sheer panic — the very people who were clearly trying to help him. I ran over. I can’t run very fast, but adrenaline carried me to my baby.

The noise of the adults shouting, firing off questions and more questions; the piercing of my son’s screams; the blasting of the shop’s music – it was all too much, even for me, let alone my terrified little boy. I grabbed him from the security guard and held him tight. He sobbed and sobbed, more than I had ever known him do before in his life.

“Yes, he’s mine.”

“No, I was not aware he was on his own.”

“Yes, of course I am sorry he was hitting you.”

I fell to my knees with one of my children standing beside me, wondering what this was all about, and the other in a heap on my knee still yelling and crying for all he was worth.

The tears welled up in my eyes and I could not control them falling down my face.

“He’s autistic,” I sniffled softly. “He can’t speak.”

The tuts and stares were so powerful they were like nails piercing right through me.

Finally, the crowd dissipated and only the security guard remained. By this time, the other adult appeared and the reality of what had happened finally hit me. My non-verbal 9-year-old with severe autism had been alone and lost in a busy shopping mall on a busy Saturday afternoon.

It doesn’t matter who was to “blame.” The fact was that it happened.

You can judge me all you like, but every day there are autistic children getting lost because they wander or get attracted to sensory stimuli and they have little or no understanding of danger. My son was found because he was watching the automatic doors open and close, and he was screaming. When the security guard noticed he was alone, he physically stopped him.

My son was not crying because he realized he was lost or because he missed me. He has no concept of what lost even means.

I have to live with what happened today. I have to find a way to keep him safe even when there are other adults with me. It should never have happened, but it did.

Please don’t be too quick to judge me.

Please be aware that children with autism are especially vulnerable. Be aware that not every child can even tell you their name or where they live. Be aware that, in seconds, a child can wander.

Be aware than even good parents like me can lose their autistic child, and we have to live with that for the rest of our lives. No judgment from anyone else will be greater than the guilt I have to live with now.

My story ended well. Not every story like mine will.

Losing your non-verbal autistic child: there is nothing more terrifying in the whole wide world.

I’m Autistic: Please Don’t Normalize Me

Understanding me is hard because communication in general is hard for me. I struggle with social skills and facial expressions that come so naturally to a large majority of the population. So, when people deal with me, they often treat me like they would any other person. That would be fine if I wasn’t Autistic.

As a child, I was told to pay attention quite a lot. But honestly, that phrase confused me. I was paying attention—to the thing that distracted me from what they wanted me to focus on. It had my full attention, in fact. But apparently, that was wrong.

This is my perspective. This is the reason I used to give a blank expression back when people got frustrated with me. I simply couldn’t process what they were telling me. To this day, vague comments really confuse me. I’m not sure why exactly, but it really helps when someone explains what they want me to do instead of a hint or frustrated quip.

Please be specific. Tell me, “I’ll be there at six to pick you up,” or “Make sure you have all the materials with you for D&D today.” That structure is important to me.

So, why then is it surprising when I get distracted? “Please focus back on the book.” Oh, yes, there is a book I need to pay attention to. Sure, I can do that. Instead of just, “Pay attention.”

Sometimes, my mind wanders again because of a sound, or because my clothes are itchy. “Can you focus back on the book?” Honestly, it’s times like this that I need to get up and do things, but I never tell anyone because I think everyone feels that way… How can anyone just sit still that long? Thankfully, when I was younger some people understood that and I was able to do jumping jacks between lessons or take a break. Even now,as an adult, I dance to music or watch a show while I do chores.

If I ever focus too much on one task I start getting overstimulated. I don’t know if it’s because of my ADD, autism, anxiety… But I do know when I’m struggling with focus and I need to expel that extra energy. If I don’t, my anxiety does take over.

So, I change my main focus to what they find so important for me to focus on. This gets me questioning why is this so important. I don’t find it important. There must be something wrong with me.  My self-doubt sneaks in. If I don’t understand and they keep saying the same thing, it spirals. I feel like I’m dumb and in the wrong, and I start getting depressed. I figure, I can’t do anything right, and then my anxiety kicks in and I sound aggressive. People who don’t know me well enough think I’m a bully.

To help combat some of the more common things that happen with me, I compiled a list. While these hints may not help every Aspie, I’m hoping they can be of some help.

Please never give me too many choices.

Never ask me what do I want to do today without having an idea of your own. Because if I don’t have any ideas, I will need some from you. It is easier for me to pick between choices then it is to think of every single thing I want to do that day, especially if I’m having a bad day.

The same thing with, “What do you want to eat? What do you want to drink? What do you want to wear?” It’s so much easier for me to answer that I want “that one” versus all of the choices that I have. So, “Would you like almond milk or regular milk?” It’s a simple question and I can answer because you know I like both. “Which would you like to do, go to the park or go swimming?” If I have something different in mind that’s not in the choices, I will tell you. For instance, I will say, “Can we do a walk instead?”

Please never mock or laugh or tease me when I’m wrong. Even if it is meant to be In good humor, I don’t understand and it simply aggravates my anxiety. When I don’t know proper facts, just gently explain how I am misinformed. But be ready for a debate because I am autistic and change is hard. And that includes change of information. Instead of yelling or being mad that I am debating with you, you’re going to have to be ready for it and explain the facts in a way that makes sense. I’m sorry my brain can’t always process the things you say.

Sometimes, I AM the one who is right. For instance, one time I got into a debate with a woman who insisted dogs were not mammals. Anyone who knows science knows she’s wrong. It is really hard for me not to come across as rude or arrogant, but to me a lot of my knowledge seems to be common sense. So, it confuses me when people don’t know the same facts as I do.

If I am rude, I really am sorry. I really mean no harm. I am honestly just not able to understand your point of view. When I chuckle or roll my eyes, that is literally me processing a foreign perspective. It’s not usually a personal attack, but it is often misinterpreted that way. I’m just trying to comprehend someone who is able to think of something so different from my way of thinking.

When I’m having a bad day… usually staff and family members are the first to notice. But sometimes their good intentions can make things worse. During days like this, please give me space. Instead of bombarding me with questions like, “Do I want…,” let my brain process what’s going on and don’t give me things that I already struggle with. Let me do things that I find easy and fun. That way, I won’t struggle with something new because I’m already struggling with something else.

Make simple choices for me. Put on music, or the TV. Or let me play a game. Put food by me, or water. As an adult, I like being asked if I ate already, rather than what do I want. It might just be that I forgot to eat, and I don’t feel well. It happens when I am stressed about something.

The problem is, I don’t often know I am stressed. I just know something feels wrong, which often makes everything feel wrong. I live alone, so my cat is the best therapy. He simply snuggles, and purrs away my bad mood. I then calm down and realize what was bothering me… though some days I never know what was wrong. Patience, unfortunately, is one of the only suggestions I have for this situation.

Please use your “I feel” sentences. Even when we’re young. We really can’t put ourselves in your shoes, without a whole lot of training and understanding. So, when you get upset at us for things, our first reaction is to wonder what we did. But if you say, “I feel frustrated when you break your new toys,” instead of “Why did you do that?” we can apologize and understand why you’re mad.

Also, please accept our apologies and tell us you understand that we didn’t mean to do it and that we’re not bad. Sometimes we don’t know our own strength. Things break because we don’t know how to play with things. Sometimes we get curious and learn the hard way that the doll’s head does not turn that way.

Honestly, observation is key. If you notice we seem surprised or scared, it really was an accident and we just need to be taught how to play with the item. But if it’s done out of anger from your perspective, it could be due to a lot of different reasons. First, anxiety is often mistaken as aggression. Second, why are we angry?

As an adult, I no longer break items because I learned to be gentle, but I sometimes hold things too hard or get upset because they’re not working the way I want them to. Because I don’t process things properly or filter things properly, it really is a split-second between “This is not working” and “I hate it!”

I had to be taught to pause and calm myself when things don’t work. I had to learn that I cannot control everything. I had to learn that the only thing I can control is myself and my own reactions. And honestly, that is a comfort. Even though it’s confusing when things don’t work the way I want them to, I no longer throw things or break things because of it.

And finally, please stop trying to normalize me. I’m autistic, I will not ever be “average.” I may be learning social skills… a lot of them make no sense to me and they will never come naturally. Be patient, and understanding with that fact. My needs will always be my first thought; my disability will never be “fixed.” And that’s NOT a bad thing.

Learn the Love