Dear Dr. M,
It’s not like I hadn’t heard of you before we walked into your office that day. Your reputation as the best developmental paediatrician around is why we stood in front of you. I had done the research on you, both professional and personal. I knew who I was looking at but I still stared a little too long during our greeting in the hospital lobby. I wanted to really understand the woman that held so much power over our world. The hospital lobby was drab and dated. It crossed my mind that the hospital was desperately overdue for a makeover. I escaped my current situation and imagined the steel and glass it would take to update the entire structure. I became abnormally interested in the architecture of the hospital as you and Alex exchanged pleasantries. I was safe as long as I stood and stared at the “modern” design of an architect who peaked in the eighties. I didn’t want to move toward the elevator as I would then be committed to this assessment but when Alex readily stepped in behind you we were on the move. I stepped carefully along the yellow line that led patients to the x-ray departments? Specimen Collection? Wherever. It was broken in spots from years of people dragging their feet along it. When we reached the elevator I lingered on this line a little too long. You and Alex moved swiftly into the waiting elevator. Kate happy to be in Alex’s arms clutching her Buzz Lightyear. I reluctantly stepped off the line and into the elevator.
You were smiling at Kate. She smiled back. The elevators had mirrors inside so I was able to surreptitiously watch you interact with Kate. I took in your makeupless face. Good, I thought. She is such a scholar that she has no time for trivial things like cosmetics. Surely, an intellect like her would not falsely diagnosis our Kate. This would all be straightened out in a matter of hours.
You led us down the hall towards your exam room. We walked past sick children. We walked by mothers and fathers so damaged by their child’s illness that they appeared hollow. I willed myself to prioritize our current scenario. I shamed myself when I could not. You’ll be surprised to know how many thoughts violated my mind during that short walk.
When we entered the room Kate happily greeted the lady that waited inside. A speech pathologist as I remember. She didn’t interest me near as much as you. I knew she would be aiding you in your observations on that day but she appears faintly in my memory while you stand out vibrant and alive as if it were yesterday. The room was large and bare. A small table and three chairs sat haphazardly in one corner as if they were moved hastily out of the way. The floor was carpeted in an industrial maroon that bore the signs of years of traffic in and out of that door. How many people were crushed inside that room? How many times did a parent stare at the barren threads of this offensively antiquated carpet to avoid crying in front of you. How many succeeded?
Kate chose you that day. Kate chose you to be her person in that room. I had originally considered that act of social interaction to be a wonderful reason for you to determine that she was far too social for autism to be a consideration. Oh, how wrong I was. I would soon obsessively research autism and its many characteristics to the point where I could detect it in someone I saw walking down the street. Not, this day, though. This day, those myths that I work so hard to dispel now, were giving me false hopes and I liked it.
You asked questions of my husband and I. None of them surprised me. I had rehearsed my answers a million times in the weeks leading up to the appointment.
Does Kate make regular eye contact?
Of course. She is very friendly. (She never could hold it for long but that wasn’t the question you asked, was it?.)
Was Kate up on her toes, at all?
Not that I had ever noticed. I looked to my husband for support. I knew he was less than obsessively attentive to these kinds of things. He was an engineer. I worked with children with autism all day long. I knew what that could mean. He concurred. I exhaled.
You smiled sweetly. Not in pity or exasperation for my obvious denial, but in a kind gesture of empathy for the battle you knew was overwhelming my brain.
Does she show interest in her peers?
She would but she is new to her daycare. She doesn’t know of them yet. She is not yet two. Do two year olds pay attention to peers? I tried desperately to imagine our eldest daughter Grace at age two. The image crushed me without warning as Grace was highly verbal and was speaking in full sentences by now. I quickly pushed that image away. How unfair that something that, once made me so proud, could break my heart at that moment.
The questions and observations went on for hours. You made notes. Your speech pathologist friend made notes. I watched your pen move looking for the tell-tale movements of writing a capital letter A. You were careless with your notes. You scribbled them out quickly. This suited my profile of you but it offended me in a small way, too. I wanted every word you wrote about Kate to be meticulous. I wanted some control.
When you were finished your observation you left us in the room sitting on the floor with Kate. I played half-heartedly trying to show Alex that I was convinced this was all a big misunderstanding. He did the same. You were gone only minutes. This I knew was not a good sign.
You entered the room and motioned for us sit in the chair opposite you. Kate sat on my lap. Kindly, the very first sentence out of your mouth was this:
Kate has Autism Spectrum Disorder.
I had not prepared sufficiently to hear this. Who could, I guess? I heard that sentence and then I heard nothing else. I signed some papers. Your eyes were so kind. I’m sure you would have walked me to the car if Alex had not been there. You talked for awhile. I stared at your kind eyes, some more. My husband answered you. Was the speech pathologist still there? I can’t remember. My heart hurt. Not my feelings. The heart in my chest ached. It rejected your words. My brain was nodding along with you. I was dizzy. I held in my tears.
It was my mother’s birthday, you know. We were heading to her birthday party directly after the appointment. Just a small party. Family only. It was a thirty minute drive. We didn’t speak. Alex held my hand. Kate played happily in the back.
Upon arriving at my mother’s house for her party we piled out of the car. I walked in first. I was anxious to get it over with. I walked in with my eyes down. When I raised my head my brother was looking at me with those same kind eyes. Then the tears came.
It’s been many months since that day. I’ve stopped crying for the most part. I tend to cry only in my car now. It is the only place I am ever alone. I don’t cry because Kate has autism anymore. I cry because I hate to see her struggle.
I wanted to thank you for your kindness that day and I really wanted you to know that Alex and I have since found relief in this diagnosis. I have stopped obsessing over milestones. I am no longer consumed with dangerously unprofessional internet checklists about autism. We are getting to know Kate so much better now that you have started us on the path to learn how to communicate with her.
So, thank you, Dr. M. Thank you for understanding that Kate wasn’t the only one who struggled to make eye contact on that day. Thank you for intuitively reaching out with small gestures of kindness because something as personal as a hug would have had me wracked with sobs. Most of all, thank you, for promising to follow Kate as long as we need you because we surely need you now.
When Grace was just six months old we ventured, as we did most days, to the mall. I would dress her up in the sweetest outfit, all co-ordinated and seasonal and we would be out the door before I had time to realize that I hadn't really remembered to get dressed that day but had, instead, slept in my clothes. We drove to the mall from our tiny cottage-turned-home that is nestled in the part of town where the rich live and the rest of us live in their former cottages. The drive was mercifully short because I had begun equating lost hours of sleep as equally hard on your senses as alcohol. So, by my calculation, I was a third of the way through a bottle of Jack before I walked out the door. In that four minutes, of sleep-deprived driving with my infant, I debated the merits of always sleeping in my clothes. What a happy accident to discover such a time-saving and laundry-sparing initiative. I made up my mind to share my genius with my friends later that day as we were planning on getting together to complain about our husbands.
The mall appeared and I took my usual spot near the door. The sign read expecting mothers or mothers of infants three months or less. I heaved my six month old buddha baby out of her carseat and secretly hoped someone would comment on my blatant disregard for the terms of the sign. I had already rehearsed my answer. They would say: "Hey, you can't park there unless you're pregnant or your baby is three months or less." (Yes, they would be that literal and boring about their attack.) Then I would say, "Come closer." And as they moved closer I would take my index finger and poke them in the forehead just hard enough for their head to snap back a little. Then I would whisper: "Thanks for your concern." It was brilliant to me but remember I was hammered and it wasn't yet noon.
Into the mall we went. Straight to the nursing room if Grace had her way, or straight to the bathroom if I had mine. We were a fine pair, the two us. Growly and quiet. I got my way that day because I was bigger and she was just a baby. Soon, it was off to the nursing room (for those of you who don't know what that is, it is a little room they put near the grotesque mall bathroom because nursing women are considered just as offensive as public urination) and as we took our seat I realized two things. First, I had on two different shoes. A cute wedge heel that I wasn't entirely sure I owned and a ballet flat. Secondly, I didn't give a shit.
Grace ate and I closed my eyes so I wouldn't have to speak to the other shunned women sitting with her baby in the chair beside me. Even though it might seem like we'd bond over our predicament, I was too tired and she had done her hair so I knew we could never be friends, anyway.
I hated breastfeeding, you know. Like, really hated it. Resented the fact that I was constantly attached to this baby with an attitude not unlike my own. I would have nightmares about getting stuck far away from her and her starving. I obsessed about being her only food source and I tried desperately to get her to take a bottle. Pumped milk, formula, water, whatever. I just needed her to feed from something else. My attitude towards breastfeeding was really popular among the mommy groups so I made sure to carry around baby bottles full of diet coke and hang them from the stroller just to make sure those righteous super moms wouldn't talk to us. Anyway, yes, back to my story.
Grace finished feeding, or rather I rammed my thumb into her mouth to break the painful suction and off we went. I didn't bother saying goodbye to my seat mate because she was applying lipstick and I wasn't sure I could cope if she stood up to reveal a flat stomach, too. Into the ridiculously expensive stroller that I just needed to own, and down the mall we headed. We no sooner made it to the food court when I heard someone say: "What's wrong with her?"
To be continued...
If Wishes Were Fishes, We'd All Cast Nets
Let's make some wishes, shall we? It can't hurt. I'l start.
Now that that is out of the way, we can get started.
Statutory Stay Home Alone and Watch Netflix Days. At least one monthly, two, if you work inside the home.
The quick and painless death of cross fit. Or, at the very least, a ban on discussing it.
More versions of Toblerone and other such magical foods.
Now, it's your turn. Comment below a wish for our list.
It's official! We are raising money for Kate's autism service dog. I know what you're thinking. That is the luckiest dog in the world, shouldn't he be paying Kate? Yes, while that is all true you must understand that National Service Dogs spends years training and preparing these pups to help our kids navigate the world. They are worth every penny.
Click the link below to donate directly to Kate's pup.
I love you, I really do. Well, most of you. Some of you are righteous tools. You know who you are. You're face is all puckered up right now and you are crafting an email to me in your pea brain. You're going to tell me I make Kate more autistic by letting her watch TMNT or some such shit. You might even be getting so riled up that you're going to call me a terrible person. I am not entirely sure what my offence is but it probably has something to do with poor parenting. The most heartbreaking part of this is that Kate would adore you. She would never judge you for judging us. She would run to you with open arms and ask you to play turtles. She doesn't want to poke you in the forehead and scream: "What is wrong with you?" like I do.
Surely you'll have no complaints about this one? A slideshow of my family. I am tired of it. A tiny number of you can be such bags and you're always harshing on us. If you want to read about sunshine and lollipops you're NOT going to get it here. I work very hard to share our reality. I can't dress it up or pretend because that would not be fair to Kate or any of us.
I'm telling Kate's story because she can't and I want to make sure she walks through the world with as many people on her side as I can possibly get. I am fighting to make YOU understand that she rules. To the VAST majority of you that are amazing. Carry on. To the haters. STOP talking to me 'cause you're just gonna get a big middle finger and maybe even a visit from one of Kate's friends and TRUST ME, she has MANY!
Look at those dolls. It's your pleasure!
It was time to get Kate's haircut and we decided to get that old hair out of her way and give her the punk rock, gender bending, haircut our little rock star deserves. Do you like it? Wait, don't answer that, because it doesn't matter. She loves it. That matters. She is happy. That matters. It is far easier to fight bad guys with out all that hair in the way.
Happy at the hairdresser. If you would have told me this one year ago, I would have laughed and laughed and then I would have made you take her for a haircut.
She's tall for her age with a haircut so chic you'd think she prefers the runway to the racetrack. She's convinced she's a boy right now with her race cars and her light sabres. It doesn't bother us in the least. In fact, we called her 'little fella' as a toddler because she exuded all those characteristics we so often associate with boys. Neither my husband nor myself tried to deter her interests. In fact, we often get a kick out of her penchant for trucks and superheroes. The autism has taken her love of Ninja Turtles and Spiderman to a level considered inappropriate by some but we envy her ability to adore something so wholly and so authentically that she gets such joy from it.
She's getting older now. She cannot be considered a toddler anymore. She's still painfully cute and except for a few cranky-pants people she still gets a smile from every stranger she hugs. Her behaviours, the ones that make us smile because they are so 'her' are the same behaviours that confirm her diagnosis to those around us. Her lack of fear both thrills us when she tries to make a friend and terrifies us when she bolts from my arms in a parking lot. There are so many conflicting emotions it is exhausting at times.
Her vocabulary is so extensive now. Just today she ran from her room and raised up high on her toes and said: "Mama, I am Peter Parker and you are bad guy, ok?"
I remember the days when I would have counted the words in her sentence and immediately called my husband at work to tell him. 'Eleven Words!' I would scream into the phone and he would cheer from his desk. There were days when she said none and only cried or hit us. There are no more days like that. She hits still but no those attacks are accompanies with beautiful and clear angry words and we appreciate it every single time. We don't have conversations yet, because back and forths are tough but she can express goings on if they are 'in the moment' and sometimes feelings, too. You should hear her script an episode of TMNT. She kicked pretend play's ass this year, too. She's come so far.
I'm watching videos to remind myself how far she's come. I thought you might like to see them, too. In the first video there is a lot of babble. I think I can make out "Are you serious?" at one point but otherwise she is resorting to nonsense words. In the second video just five months later she is once again angry at me :) but it is very clear why. For the record, I didn't 'take' her treehouse. ;)
I am not sure how healthy this is to admit, but the truth is Netflix has become my new obsession. I hide my addiction like a prison boyfriend but I can easily binge on a whole season of Damages in two days. When you ask me to do something on the weekend you are really competing with Netflix.
And sometimes, just sometimes this outstanding mom will set Kate up with a string of Spiderman shows and plug Grace into an exciting adventure show so she can get just one more episode in before it's time to cook supper. Haha, just kidding....I don't cook supper.
Anyway, you'll be happy to know the bulk of our Netflix indulgence happens long after the kids are in bed, but in the spirit of being honest, I do appreciate the times when they decide they want to satiate their need for Netflix because I am tired. I am 'wake up in the morning and immediately think of going back to bed' tired. Who's with me?
So, to the other moms and dads who look at their phones too much and gorge on Netflix and cook from frozen and drink from a box and turn down invitations because Netflix doesn't ask questions...I understand.
I know I've written things that have riled you up. I know I've written things that have pissed you off. I've even penned a few that have made you cry. That's the point. To start a conversation. That is always the point.
If you think my title references my power, you're way off. I might have your ear once in a while, but Kate; she has you. She draws you here. Her innocence, her authenticity, her complete and utter devotion to all things superhero. She is making you, and me, think about and question everything we thought we knew.
When you find yourself on the side of the majority, it is time to stop and reconsider.
~ Mark Twain
Happy Mail to:
27 Wellington Row
Saint John, NB
Grace and Kate's mom. (Shanell)