"That's mine!" Kate screams as we walk by anything she is remotely interested in. I am guessing she has heard children at her daycare call out this phrase when another takes a preferred toy from them. I am glad that Kate has made this connection and is attempting to use this phrase to request something but clearly we have some work to do in terms of when and where to use it. Lately, those two words have been preceding some pretty serious meltdowns.
Episode One: Kate does a fantastic job at her swimming lesson and I take her to the toy store to look at the train table before we go home. There is a little boy playing with the trains. Kate lunges for him and removes all of the toys from his hands and says, "That's mine!" The boy looks at his dad and says "Daddy, that boy took my trains!" I immediately liberate the trains from Kate's unnaturally strong hands and hand them back to the boy. "She's a girl." I say. "She just loves to dress like a firefighter and wear a ninja turtle hat." The boy had stopped listening to my explanation the moment the trains hit his fingers but I finished anyway. Kate lunged for the trains again. The boy, in a true 'fool me once' move, tucked the trains behind his back and looked up at Kate, a little defiant and a little afraid. Kate stopped for a moment, jaw clenched, to consider her next move. I could see that she felt wronged (that is the way she sees it and no amount of explanation from me about 'fair' and 'who had it first' will help us now) and her ability to regulate the anger that comes with that is non-existent at this point. I swooped in with the best re-direction move I have. "Kate, look what I found!" Her head whipped around and I had to quickly produce something more interesting than those trains. I scanned the rack beside me and spotted a dinosaur puppet. Bingo! I had saved the boy and his trains. I made ridiculous dinosaur sounds and chased Kate away from the train table until she became equally enticed by the Groovy Girl doll beds. The boy and his father made their purchase and left without ever knowing how close they had come to a Kate tornado. The smile on that boy's face is my reward. No really, the lack of a bite mark on his cheek is my reward.
We are walking through the shopping centre on the way to the car. Kate spots a lady pushing a baby carriage coming towards us. I am carrying her and when 37 pounds of pure muscle decides to jump out of your arms and beeline for a newborn you feel it. (I know she can walk on her own. Did I mention the meltdowns?) Kate is quick, and she reaches the carriage before me. Two possible scenarios run through my mind in the seconds before I reach her and the carriage. Either she will immediately remove the toy from the baby's hands while screaming, "That's mine!" at the tiny infant. Or she will emancipate that baby from the carriage itself. I catch up to Kate just in time to see her reach into the carriage and gently touch the baby's blanket. She looked up at the smiling mother and said: "That your baby?"
Good girl, Kate. We are getting there.
"I wake up, I wake up, I wake up, I wake up, I wake up......?" The early morning request will go on and on until one of us goes into her room and helps her down from her safety-gated bed. On the weekend, I was especially tired and I think I let the perseveration go on a little longer than I usually would. We try calling out to her from our room. "Just a minute, Kate." It never works. Her brain gets stuck. On this particular Saturday I heard Grace crawl out of bed and run loudly into Kate's room the way little children run, with their feet pounding on the floor making them sound deceivingly heavy and brutish.
Grace: Good Morning, Katie. Do you want me to get you out of bed?
Kate: (Confused but intrigued) I wake up, Gwace?
Grace: Come here baby, Gracie will take you to the couch to cuddle.
Kate: Cozy, cozy?
Grace: Let's go get Cozy, cozy.
I listen intently as Grace helps Kate delicately out of her bed. Kate's feet hit the ground much like Grace's. Four little feet make for the living room shaking the whole house and I lay there for a few minutes enjoying a luxury we haven't had in almost six years. And then I hear it. Kate is asking for something. Grace is trying to figure it out.
Kate: I wanna Spuna pwaydo, Gwace.
Grace: Do you want to play turtles, Kate?
Kate: (Screaming this time, because her patience is non-existent when she isn't quite awake) SPUNA PWAYDO!
Grace: Playdough? You want playdough, Kate? I will get it.
Kate: (Completely unintelligible now because she is so beside herself. She does NOT want playdough.) SPUNA PWAYDO!!!!!
I know I have to get up now because Grace could be in the path of a Kate tornado. Kate is frustrated and she is about to lash out. I jump out of bed and I know immediately that Kate is asking for a random video on youtube that is a toy review of a SpongeBob Playdough kit. She loves it and watches it over and over. I know this and Alex knows this but Grace does not. Grace doesn't have to worry herself about what Kate perseverates on. Grace tried her best to help. This simple early morning interaction is just one more reason why we cannot take you up on your kind offers to babysit. Communication is very difficult for Kate and her frustration level peaks when she is asking for a comforting item (like this video) and the person cannot provide it. There are a number of people on the 'list' that can watch Kate. These people spend enough time with her and can usually decode her when necessary. You know who you are. There are a few of you that have yet to lay eyes on Kate that could handle her tomorrow. You've been where we are.
If you feel like telling me that I should make Kate wait, or put her in time out or take the video away until she learns to ask for it properly, you are reading the wrong blog. Autism does not allow for that in our case. We have hope that these skills can be learned but we are not there yet. We are still in stage I like to call 'Damage Control.' If Kate goes off, we try and deescalate the situation without completely giving in or setting her off. We ask for manners and we ask for the vocabulary needed to request the item but we don't expect Kate to fully manage her expectations at this point. If you think you could do better....let me be the first to tell you....you couldn't. Kate would own you and I would get a kick out of that. You wouldn't be the first that has tried and you won't be the last.
I got Kate settled and hugged Grace and thanked her for being so helpful. It is a brave thing to get between Kate and what she is looking for. I should know.
Just in case you are worried. Kate settled in with her video while Grace cuddled beside her. I didn't dare go back to bed. I poured some coffee and settled down next to them until I heard another desperate cry:
"I WANNA MASSER SWINTER!!" (I want Master Splinter) This one Grace could manage and she quickly got her sister settled back down watching a Ninja Turtle video.
Don't get me wrong. We are not slaves to Kate's demands. She more often plays with her toys happily, although rambunctiously, and can entertain herself for long periods of time. When she feels overwhelmed (first thing in the morning or directly after daycare) she often requests time with a preferred video. Relax, we limit it. She sees that iPad less than one hour a day. I've done the research and that is perfectly appropriate. We don't mind giving her this time to decompress because we all do it too.
Communication deficits and a lack of patience can be a pretty brutal combination. We are learning to manage and so is Kate.
A few of you have asked why I write for free. For some of you, writing might seem like a chore. Kind of like the way I feel about groceries or answering the phone. For me, it is more comparable to taking a bath or nursing a Jack and Coke. Writing is relaxing. It calms me. I am particularly fond of having no deadline, no editor and no pressure. Writing is a way to release those thoughts in my brain that keep me up at night or distract me from more pressing matters like life. Writing allows me to connect to you. You, who always send back words of encouragement, funny anecdotes and a promise that we are not alone. I take a lot from the process. I take a lot from you. You see, I don't do this for free.
I am not foolish, however. If the Huff Post came knocking I would take their money. I just don't need it to be that way. I need to write. I just won't write for free.
Some of you have little sensory-defenders. The idea of going to the movies is laughable, let alone a place like Disney World. You take your neurotypical children to restaurants and movies and sit with the full realization that your family is not complete. Your sensitive little one sits with a Grandparent while three quarters of your family takes part in an activity some would consider mundane. You are told that they are happier there and you should feel reassured that you are making a good choice to protect them from the harsh sights and sounds of the restaurant/theatre/mall. They would hate the movies, anyway. You know that. But it hurts you. You may even look to other families with a twinge of jealously or even contempt for their oblivion. They look bored and cranky. You wonder what boredom feels like. You never fully enjoy an outing because you feel cheated.
Some of you have little sensory-seekers. The idea of going to the movies is threatening to other theatre patrons. You know your child could single-handedly shut down Disney World. You often leave your child with a Grandparent, if you should be so lucky, because they can go from zero to meltdown in a matter of seconds. You can't stare at the other families with derision because you are trying to stop your child from damaging public property. No matter, though, because they are all staring at you. You never fully enjoy an outing because you are afraid for the safety of others.
Some of you, like me, have a child that is a therapy-defying mix of the two.
I know a little about you because I live where you live. I also know that you have never and will never wish to be in someone else's shoes. I know you stare at that little person with the same adoration as any parent might. I know you pilot their course on little sleep and less money and you really don't mind.
I know they would thank you if they could.
So, let me get this straight. If you cannot see it, it must not be there? So, because Kate looks like a blonde angel, eating an apple and watching Princess Sophia she cannot possibly have autism? She cannot be developmentally delayed because you hear her speak and aren't children with autism non-verbal? Don't they scream and hit and flap and jump and spin and otherwise make themselves known so we can rush to their sides and immediately start with behavior modification strategies that will extinguish such unnatural behaviors?
Why do you scrunch up your face when I tell you she has autism? Why do you look at her and say; "Really? I don't see it. She seems normal to me?" Is that supposed to be a compliment? Should I breathe a sigh of relief and call my husband up with the good news? "Guess what, honey? Joan says Kate doesn't look like she has autism. We are in the clear!" What are you looking for when you look at her face?
Must you see something to believe in it? What about gravity? Newton gets a pass but Kate has to prove it?
I see the autism in Kate every single day. Some of you do too, when you are privy to those physical manifestations that she'll treat you to at the grocery store or at the pool. The inappropriate hugging (I know you love it, though), the babble, the verbal stimming, the jumping, the flapping and yes, even the screaming and biting. There are many other ways autism manifests in Kate. Some are amazing and some have us reaching for a box of wine. Either way, Kate has autism. She will always have autism. You may not see it on days when she negotiated her way through her tasks like a champ. You may not see it when her father and I expertly redirect her before it comes bubbling up and overwhelms her little body. You may never see it because you don't want to. You may see some of Kate's behaviors in your own children and it may send you into a state of denial that keeps you forever defending her right to be neurotypical. I love that place of denial. I know it well.
Yes, there is such a thing as being on the 'quirky side of normal.' It is even hip to be there, these days. This is not the case for Kate. She has a neurodevelopmental brain disorder. Accept it. We have. She is still perfect in every conceivable way.
Happy Mail to:
27 Wellington Row
Saint John, NB
Grace and Kate's mom. (Shanell)