"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. Episode Two: 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.
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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. I could relay a number of instances when Kate has been teased or bullied by other children. I won't, though. It would be too painful for you to read. You won't like it anymore than I did. The children are not to blame, of course. They instinctively question her differences. They can't help but laugh when she does something strange. The most disturbing part, for me, is when I see Kate laugh with them. Kate doesn't understand that the children are laughing at her odd repetitive movements or her 'baby-talk' or her diaper or her chewy toys. She often thinks she is in on the joke and she laughs longest and loudest. It breaks my heart. It makes the children laugh harder and I get glimpses of her future at school. I guess you could say that Kate is moderately autistic, mid-functioning, swimming in the middle of the pool or whatever other silly metaphors are used to make her developmental delays clearer for her team. She is not severe enough to garner the sympathy of her peers and not high-functioning enough to 'pass', either. She sits somewhere in the middle and she is a prime target for bullying. This is terrifying for us. Alex talks about how we can work with Grace and the core group of children that Kate will go to school with and train them, so to speak, to protect Kate. I cringe at the thought of Grace feeling all of the pressure to stand up for Kate in the school yard. But, together, I think Kate could have a righteous little team behind her. I think about this little team, that we are slowly preparing for her, when I feel afraid for her to walk through the doors of that school. When I titled this blog GoTeamKate, I was originally referencing the many adults that would work together to help Kate negotiate her world. I didn't expect that a team of little children might be the most integral part of all. I will spare you another post about how hard holidays are for children with autism. If you're reading this, you know. Or you care to know. Instead I will tell you about a way we are planning to make things run a little smoother this year. GoTeamKate is going to sponsor a Sensory-Santa event. Firstly, you don't have to have autism to be afraid to sit on Santa's lap. Neither of my children take part in this tradition and I'm betting many of your children struggle, too. It is a bit unnatural, isn't it? Waiting in a long line with other anxious children and tired parents to sit on Santa's lap. For some, the line waiting is hard (nearly impossible for Kate), for some the sitting on a stranger's knee is hard (not gonna happen for Grace) and for some, the mall at Christmas time is simply too overwhelming to begin with. GoTeamKate is going to offer an alternative this year. We have reached out to Santa Claus, himself, and he is willing to come to the RKYC on November 30th from 2-4pm and spend some quality sensory-friendly time with children who, otherwise, would not get a chance to meet with him. If your child(ren) has sensory issues as a result of autism or any number of other reasons, then you are a candidate to attend our event. The event will, of course, be FREE of charge (**with the help of your donations). Parents may or may not order photos from the volunteer photographer at this event. (*See details below). Families (yes, the siblings of your sensory-sensitive kids are welcome, too!) can come and visit with Santa for a few hours. This event will be as sensory sensitive as possible. To book a spot or ask questions please email me here shanell.mouland@gmail.com. Obviously, there will be limited space available so please book early and make sure you are free to attend at that time. Santa will be there to allow children as much or as little interaction as they feel comfortable with. Some children may just enjoy watching Santa from a distance and that is fine with us. There will be activity stations set up to keep children entertained and some sweet treats to keep them happy. Please stay tuned for more details. *GoTeamKate is looking for an amateur photographer to lend their skills at this event. Duties would include volunteering your time and equipment to take pictures of the children interacting (or not) with Santa. Parents could then request pictures directly from you (for a price determined by you and GoTeamKate) which would be delivered at a later date. *Update: We have a photographer! We are very excited that Sarah Steinhauer has offered her services. Check out her work here: www.wix.com/sastein41/runestonemedia. **If you wish to donate to this event please use the donate button to the top right. (Unless you are reading this on your phone because then the donate button is below). Thanks! Each day when I pick Kate up from daycare, I ask her, "What did you do today, Kate?" and she always smiles and gives me a string of babble. She has lots of words but she cannot answer a question, yet. She can't tell me how her day went. She is great at requesting things. "Mama, I want turtles, wet's do dis." or "Mama, I go outside, wet's do dis" and some of the sentences are so long and detailed that Alex and I can't believe it came out of her mouth, eg. "Mama, I pwease tell you I want hug now pwease, wet's do dis." Anything else she says is usually jibber jabber or unreliable. So, I rely heavily on those that work with her each day. They are great at patiently telling me the details of her day. Yesterday, when I picked up Kate and asked her the same question, she said, "No hitting, Kate." I was pleased because in a way I think she was telling me how her day went. Of course, I don't want her hitting the kids in her class but at least she was trying to share something with me. I'll take what I can get. If you work with children with communication difficulties,and that includes the vast majority of kids with autism, regardless of where they land on the spectrum, then please be cognizant of how removed their parents feel from their day. Remember, even children with large vocabularies can be unreliable with communication. Please share all of the good and some of the bad and even some of the mundane. It means a lot. If you love someone with autism you must buy this book. In my opinion, to date, there is nothing more authentic, credible and enlightening than this story. "The Reason I Jump" is written by a thirteen year old Japanese boy. To be honest, I avoided this title for awhile. I was tired of reading inspiring stories of autism genius. This is not one more book to tell you that there is potential genius locked inside your child. This is real. This is beautiful. I've been craving this. The genuine narrative of a thirteen year old non-verbal boy answers so many of your questions and offers insight I haven't found anywhere else. I hope this becomes required reading for all those that work with our children. Buy it, share it, talk about it. Thank you Naoki! Long before Kate was diagnosed I was invested in autism and other exceptionalities because I am a teacher. I was not an advocate, or even well enough informed to do my job property, but I was interested and compassionate and ready to learn. And then, this prick said his piece and I cringed and moved on because it really didn't threaten my world. Oh, how wrong I was. If you think he is alone in his ignorance, you'd be wrong. I didn't post this because I want Michael Savage's dangerous message to spread anymore than it already has. I posted this as a warning. Just because people do not say it as loudly and confidently as this loser, does not mean they do not perpetuate this idea every time they question your parenting or your child's diagnosis or your choices. In some ways, Savage has done us a favour, and shown his true colours. He is like the racist that is vocal about his archaic beliefs. We can spot the crazy easily and make efforts to avoid it and protect our children from it. The more dangerous person, is the one that silently agrees with Savage's rant; the one, that knows his minority opinion would not be welcome, so he stays mostly silent and instead preserves Savage's mantra quietly. Below, I have left Savage and his supporters directions to where I think they might be most welcome.
Do you know how hard it was to NOT instagram filter the hell out of these pictures? I love those filters and the way they make everything look 'better'. In the interest of the integrity of this post I held off and decided to show you the real deal. First, the scene: An apple orchard in Kingston. Piles of children tripping over the apples discarded on the ground by piles of other children. Grumpy dads and iPhone wielding moms taking pictures to prove their children do seasonally appropriate activities in seasonally appropriate attire. Two minor autism induced tantrums and a friendly puppy to make it better, round out our morning at the orchard. I have arranged the pictures below to show you the kinds of things that I usually post on Facebook, Twitter, Instagram, Vine etc. Following those, I posted picture depicting the reality of our day. I am finding I enjoy reality much more, these days. Below, the pictures that I pulled from the hundred I took today. These are the pictures that make our day look like an effortless morning outing. See the happy, well-behaved children. Isn't is obvious that this family went home and made apple crisp to eat after their honey ham supper tonight? This family has their shit together. This family took the visit to the orchard as a learning opportunity and taught their two young daughters about the different types of apples and the kinds of great foods they could make with their haul today. They even threw some math in when they asked the girls to count the apples in their buckets. The older girl kindly reached for the apples that were out of reach for her little sister. They stuck together and giggled softly when an apple fell from the tree and almost hit daddy in the head. Oh, what a time! (Did that make you feel as nauseous reading it, as I felt typing it?) And now, the reality. (Minus pictures of the tantrums, which would have been ideal, but dammit I can never get to my camera and stop her from destroying public property at the same time.) This family dropped all of the apples out of their buckets twice. They are fairly certain many of the apples they brought home had been sitting on the ground for weeks. Their littlest one beelined for a busy road and her mother turned her ankle while chasing her. Their mother swore loudly and caught the attention of a disapproving LuLuLemon clad supermom. (Did you know, LuLu made apple picking gear?) The oldest refused to wear the outfit that was chosen for her and perfectly co-ordinated with her sister's. She chose to wear her school clothes from yesterday, instead. The mom spent so much time behind her IPhone trying to get a 'great shot' that she did not actually pick even one apple. The drive to the orchard was longer and more painful than the eleven minutes they spent there but when they look back at their 'pictures' they will remember it so fondly they will be willing to do it again, next year. They went home and gratefully accepted an invitation to eat elsewhere because they were too exhausted to cook. I know who I'd rather hang out with. So, from now on, I will make every effort to show you the truth, as I see it.
It is the mark of an educated mind to be able to entertain a thought without accepting it. ~Aristotle~ I appreciate that your employer offered a professional learning opportunity that allowed you to spend some time learning about autism spectrum disorders. I am grateful that you took your learning seriously and you are interesting in learning more. I only wish to caution you this: The study of autism spectrum disorders is massive and ongoing. Current and progressive pedagogy is easily permeated by unfounded generalizations that sweep though the autism learning community and can cause serious repercussions for the families living with autism. Widely accepted myths about autism are spread through networks of professionals and paraprofessionals working in the field. This is dangerous and I would encourage you to be sure that your information/program is legitimate, peer and parent-reviewed and has the best interest of the individual in its design. This is not an easy task, I know. If you have chosen to work with individuals on the autism spectrum you have the responsibility to understand autism in its many forms and you must understand the basics, at least, of genuine and justifiable treatment options. I do not posit that living with a child on the spectrum or living with autism makes someone an expert on autism. I do maintain, however, that the parent is the expert on their child and their child's version of autism. Learning about autism is a ceaseless endeavor. You will not conquer this topic. I, for one, would love to see you try. I try. And while I try, I read and I read and I read the most relevant literature I can find. I spend hours speaking with other members of the autism community. I listen to the opinions of doctors and therapists and the people that love these children and I hold all of this information in my brain until it becomes too much and it spills out onto this blog, for better or for worse. Help, four months until we leave for Disney. I know.... not exactly a problem. I am asking these questions WAY in advance because I am a planner. I need you advice. I need your tips and tricks. We've been to Disney with the girls before...before the diagnosis...before the mountains of help and support...before we knew for sure. Kate hadn't even turned two. Like a large number of parents of soon to be diagnosed children, we thought Kate was hearing impaired. I guess she technically was hearing impaired because her ears were so full of fluid that she was hearing as if underwater. She had the surgery to place tubes in her ears and then we could no longer blame her hearing for her funny behavior. I can practically hear some of you nodding your heads through the computer. I know you went through this, too. I know when you lost the ability to blame their hearing you entered a whole new faze of this trek. In fact, our trip to Disney two years ago solidified all my fears about Kate. You can read more about that in our diagnosis story. Autism or not, Kate was under two years old when we first made our way to Disney and we knew it would not be easy. On that trip we had the luxury of staying at the Polynesian Resort with the monorail at our doorstop and we had 6 adults and three little girls to share between us. It was a recipe for success and most things went off without a hitch. Alex, is afraid to fly. (I don't think he'll mind me saying that.) Honestly, he should be medicated but instead we hand him Kate and he is so busy taking care of her he forgets his own paralyzing fear. It's kind of a win/win. For me, anyway. This trip will be different for a few reasons. We are going alone; just the four of us. We are staying off resort. We are renting a car. It will be a little less convenient but we will make it work. Like last time, we will sit Alex and Kate together on the plane and Grace and I will relax and watch movies ;). I want both girls to have a blast and I know they will but I am particularly interested in making sure Grace does not feel held back. We will ask for the Guest Assistance Pass at the concierge of each park we visit. (I am not entirely sure what this will entail.) What else should I know? What can I do to make this as seamless as possible? Are there accommodations that can be made when we fly? Will I be liable if I become violent if someone says something rude to Kate on the plane or at the parks? You know...the usual questions? |
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April 2022
AuthorGrace and Kate's mom. (Shanell) |