In the past few weeks, when I have had moments to think, I have wondered how in the world I would follow a post that reached across the globe. I had no designs on 'topping' that post, so to speak, but the pressure to do well for you, the readers, who have been so astonishingly kind and supportive (save a few brutes) is overwhelming to say the least. I'm going to read and respond to every email, you know. The photos of your children make my eyes leak. They are beautiful. You are sending gifts and letters to my girls and they are thrilled. Please keep your money, though. If you feel the need to part with your money then you can send it to Rockstar Ronan. His mama is doing some phenomenal things. There are some exciting things brewing for GoTeamKate and because we are a team I will keep you updated as I can. For now, I want to thank you for joining our team. I am pretty sure we are slowly becoming unstoppable.
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In the first video Kate is the only child brave enough to take on the splash pad during an unseasonably cold day at Disney World. Her sister was off to enjoy a few rides that Kate didn't meet the height requirement for so we spent some time here, at Disney's new Big Top area. As much as I enjoy watching these videos for the supreme cute factor, it is the second video that has me wondering. Kate will often 'zone out' like this after excitement. Do your children do this? It seems harmless enough and I will be bringing this video to the attention of her doctors since I finally caught an episode on video. Before you panic, I do know that seizures sometimes manifest in this way. I will ask her doctors to rule this out. Dear Kate: Why did you get to board the plane before me? As you can see from my Brooks Brothers suit and the latest version of the IPad I am a very important business man. My deadlines are looming and every minute I am not plugged in costs my company money. Yours Phil Black Owner and Chief Operator of Balloon Animals Inc. Dear Phil, Firstly, can I book you for my next birthday party? Secondly, I apologize because I failed to notice the lovely suit and the latest technology you held during my very painful sensory meltdown. I guess you could compare it to that time when you went to Legal Seafood and they were out of your favourite beer. For me, it was so overwhelming that I lost what language I have and both of my parents and my little sister worked hard to bring me back from a place that is tough for all of us. I don't always meltdown at that level but when I do I make sure it is extremely inconvenient for executives like yourself. If my father wasn't so busy holding me close and calmly helping me recover he might have had the time to politely explain autism to you with his fist. My mother would not have been so kind. Best, Kate Dear Kate: Why did you cry on the plane? You look old enough to understand that you must stay in your seatbelt until the seatbelt sign goes off. It was disruptive and dangerous when you screamed and took off your seatbelt before that little light went out? I travel all the time and I've never had the misfortune of sitting near a child that was so difficult! Sincerely, Joan "This is my second time on a plane" Johnson Dear Joan: I could tell immediately by your travel pillow and that brand new copy of In Style, that you are a seasoned traveller. I sincerely hope that I was not too disruptive to you during the flight. I could not understand the rules of the plane as language is not a reliable way to communicate to me. I prefer visuals, so my parents worked hard to show me what had to be done. The noise of the plane, the strange lighting and seatbelt were very difficult for me to navigate. I often asked to get off the plane, which must have been so frustrating for you to hear. Imagine, how my parents felt at 30,000 feet? In the end, I heard my parents discuss the idea of removing you from the plane at 30,000 feet. I guess they felt my confusion was easier to manage than your judgemental looks. Best, Kate Dear Kate: Why did you have a disability access pass at Disney? You don't look disabled? Where is your wheelchair? My knees have been hurting all day and I don't appreciate seeing you ahead of me in line. My aunt's sister's cousin's child has autism and he can't even talk! So, don't tell me you have autism because I heard you ask for a drink of water! Stop taking advantage of the system! My arthritic knees deserve that pass more than you! Angrily, Lois "Too old to be trading pins at Disney" Mercer Dear Lois, That pass was about as useful as the parenting advice I assume you dole out daily. It didn't move us any faster through lines than a FastPass and it was awkward to obtain and show everyone we encountered. We gave it a try because waiting is a concept that I have yet to master. Kinda like you and your problem with the concept of kindness. I know my parents would never waste precious time explaining my condition to you so I will give you your first lesson. I have autism and I don't care if you believe it. Best, Kate Dear Kate: It was so frustrating to see you scream at Goofy while my children and I were waiting patiently in line. My children did not appreciate the noise and commotion and we had been waiting forty-five minutes when you walked up screaming that you 'wanted to see Goofy!" Well, get in line sister, just like the rest of us. What makes you so special? If you are going to scream, your parents should take you right out of the park. We paid good money to be here, too! Righteously, Donna "I still force my teenagers to go to Disney with me" Wade Dear Donna, It's comical to me that you thought my behaviour was the stand out in that line. Yes, I was having trouble understanding that I had to wait my turn to see Goofy but the real show was a grown woman wearing head to toe Disney garb standing in line to see Goofy with two, understandably, mortified teenaged children. I know your goal in writing this letter to my parents was to teach them a little something about parenting but let me, instead, share some wisdom with you. Your teenagers don't want to travel with you to Disney anymore and that wasn't coffee in their tumblers. Best, Kate It was raining when we stepped outside today. Not the rain that falls hard and has you running for cover but that umbrella-defying mist that cools you off. It was perfect. We knew that the rain and the New Year's Day hangovers would keep most people away and we were right. As we parked just outside the gate we walked up to the line you see below. Things were looking up and with risk of ruining the suspense of this post, we had a fabulous time at the Magic Kingdom. So good, in fact, that we are going back at least two more times before we leave! We didn't make it on many rides and we didn't see many shows but our girls were happy and if you are a parent you know that that is what constitutes success these days. We started off on the right foot and headed right into guest services to get the Disability Access Pass for Kate. I will post a picture of it above because her photo turned out really cute but for the life of me I cannot see how it is any different from a FastPass. Ultimately, we headed to a ride we were interested in and the hostess standing at the end of the line would write down a time that we could come back and enter the FastPass line. The time she would write down was always equal to the wait time of the ride. We could only do one at a time and we could not stack our card to line up rides for the whole day. This system is balls, as they say, and I won't bother with it next time. Waiting was brutal for Kate and we had to spend much of our time trying to calm her down as we stood outside of an attraction. Enough of that, on to the good stuff. We signed up both girls to do Bibbidy Bobbidy Boutique. We had no expectations of Kate but we felt we owed her a chance. As we waited (<------there is that word again) our turn, we could see Kate getting agitated and asking for the pirate duds of a little guy who was waiting for his sister. The conversation went like this: Me: Kate, you can be any princess you want. How about Belle or Aurora? Kate: Princesses are sweeping (sleeping). I piwate! Me: We can't do the pirate makeover here, Kate. How about you pick a princess? Kate: I piwate! Gwacie Pwincess! Me: Pirates are all gone, Kate. Princess or no costume, ok babe? Kate: Fine. I Pwincess Sophia! Me: Perfect! (Phew) Grace chose Belle and was in her glory for the entire hour and Kate shocked the hell out of us when she let the 'Fairy Godmother brush and style her hair! No joke, none of us are allowed to touch her hair. Her therapists work on hair brushing programs with her. When they see the video below their jaws will hit the floor. A total Disney success for us. Grace was so thrilled and we were beyond happy that she was able to enjoy her day without too many disruptions. Grace enjoying some Daddy time while Kate napped at the park. It wasn't perfect by any means. There was the Buzz Lightyear ride. Buzz is Kate's man and she adores him but this ride was too much and resulted in the mini-meltdown and mid-park nap you see below. Don't fret though. Soon after....this happened! Success. I could watch this video over and over. I cried twice today, so far. I am visiting the so-called 'happiest place on earth' and I have cried twice! Happiest place on earth? Maybe if you are the kind of person that wants to get engaged, married, honeymoon and pop out your first born here. For the rest of us, it is a slightly worse version of what you might expect. Don't get me wrong, most of our time here we are happy and smiling and spending all of our hard-saved money on the souvenirs you can buy at my next garage sale, but there are moments that test me. Like, the moment at Seaworld today when Kate decided to attack my face because the "Shamu Show" had music that was far too loud for her little ears. As I took her out of the show, she slapped me over and over until I pleaded with her stop and then she split my head open with her 'Dolphin-Trainer Barbie." Relax, it was minor. So minor that I can't find the cut, anymore. But, I cried. I pulled my sunglasses down over my eyes and watched her dad whisk her off and I cried. Next, things got fun, and Disneyish when we made use of the disability pass (more on that later) and "virtually waited" two hours to go on the 'Antarctica' ride. Both of our girls absolutely loved it and that made me beam. I got a taste of what the advertisements promised! After we made it through the park we decided to head home. Kidding, Kate demanded that we leave immediately, and we know better than to argue. Grace was happy to go home with the promise of a swim at our resort. We arrived home, with Alex's expert driving (I swear he could drive anywhere with ease) and headed for the pool. Soon into the swim, Kate told me to "Shhhhhh", and for Kate that is code for: "I am pooping right now so get away from me!" I immediately grabbed her out of the pool and ran for our room because if you are a parent you know how well swim diapers manage poop. She screamed and clawed and spit the whole way. She was pissed and she wanted the entire resort to know it. When I finally got her back to the hotel room I painfully placed her into the beautiful jacuzzi tub built for two that sits in the bedroom of our condo and rinsed her off before a nice warm bath. She screamed until she was changed and swaddled in a blanket and then I cried one more time.
I really don't want you to think that I am unhappy or ungrateful for the luxury of spending a week at Disney with my children. I just want to give you a true picture of how this week will go for a little girl with autism and her family. At the moment, both of our little girls are snuggled in the bed beside me sleeping peacefully and dreaming about a better day tomorrow. Alex is watching football and I am murdering a bottle of wine. As it should be. Oh, that concert. That Christmas concert. It has filled me with delight and dread and guilt and I haven't even attended it yet. Is this how all you parents of exceptional children have been feeling all along? Sick with worry that your child will stand out more than every other day? Have you felt sad that they might find discomfort and even pain in what is supposed to be a celebration of the season? How cruel a paradox is this concert? I know that some neurotypical children will pick their nose and cry instead of sing like angels. When our children act strangely they will draw attention, yes; but that attention is not what makes this concert hurt. The attention will be kind and positive for the most part. The audience will fall all over themselves to support this inclusive little gang because people, for the most part, are pretty cool. The problem is the feeling you get inside when you prepare your child for an event and you realize that you have lowered your expectations in fear and the guilt that comes along with that can be paralyzing. Seem dramatic? That's because it is. Do I love celebrating every milestone Kate reaches? Of course! Do I immediately compare/wonder/imagine other scenarios? Yes. Shamefully, I do. You don't? Tell me your secret. I don't want your kids. I don't want your version of family. I want mine. I just wish I could manage these thoughts. So, tonight I will take Kate to the concert that Alex had to convince me was a good idea. Oh, how difficult it is to practice what you preach. I know the whole room will support whatever way she is able to participate in this event. It is not their expectations that I am worried about. It is my own. I won't post this until I have an update for you. My precious Kate will steal the show, this I know. I hope I can get out of my way long enough to enjoy it for what it is. Her special night. *Update She rocked it. She owned it. My heart burst with pride and not once did I let those thoughts of what might have been cloud my brain. Kate is teaching me so much. I won't write another word because this video speaks for itself: Dear Kate: How come you only eat beige foods? I think you might be malnourished and your parents need to force you to eat something with nutritional value. I would make my child sit at the dinner table until she ate what was in front of her! You sound like a spoiled brat to me. Maybe, your terrible diet is half of your problem. Sincerely, The Surgeon General of Stunnedville Dear Surgeon General, First, let me be clear. My only problem is that you had enough time to kill between your hot yoga and learn to knit classes and it gave you reason to speak to my mother. Secondly, I eat a very specific diet for reasons that are sensory in nature. I find the idea of eating an orange revolting. The smell makes my eyes sting and the texture turns my stomach. The colour of the green beans on my plate forces me to look away. Furthermore, when there is pita bread on my plate I can eat it. When you add strawberries beside that pita bread you have changed both foods as I am only comfortable with one food at a time. My parents have already spoken with multiple specialists in the field of limited diets and autism and they all agree that I am doing just fine with the current food expansion program that I am on. My mother sneaks powdered vitamins and omega 3s into the baby food that she still feeds me at the expense of looks from people like you. If you would like to learn more about my diet please feel free to click here. I likely have a better diet than you because clearly you have eaten something that has turned you into a righteous asshole. Best, Kate Dear Kate, Why do you still chew on baby teethers? I knew a girl who let her child have a soother until he was four and it was absolutely ridiculous. All the moms at playgroup talked about her as soon as she left the room. You'll never see my son doing something so foolish. Children should be weaned from baby items like tethers She isn't doing you any favours by letting you hold onto such a bad habit. Why don't you start breastfeeding again, instead? At least that would prove that you have a good mom. Sincerely, Co-dependent Cathy Dear Cathy, Someday, in the future, I am going to make friends with your son's wife because she is going to need someone to drink with. Otherwise, you should know that I do not chew on baby teethers. I chew on very chic chewelry. It is jewelry that allows me to work out some of the oral sensory issues I have. I often have the overwhelming need to bite down and rather than hurt those around me I have learned to chew some of that anxiety away on my very hip collection of chewelry. In fact, as I read your letter I had to immediately reach for a piece because otherwise I may have bitten right through mom's laptop. Best, Kate Dear Kate, Why do you choose to play alone? Sometimes, I feel bad when you don't choose to play with my daughter. She did say she would let you be Ken in her Barbie game. What more do you want? Do you not like her? I really want to tell my friends that she has a friend with special needs. Sincerely, Sister Mary Catherine of Suburbia, Dear Sister, I choose to play alone because I am independent and strong and the social conventions that rule your anxious world don't affect me in the least. I like your daughter. She is just not into Ninja Turtles yet. Her tastes are more freshman right now. When she becomes more sophisticated we can play turtles together. I play alone because I am a honey badger. If you don't know what that is, please click here. I like being a bad ass. It makes my parents smile. They know I will be fine. I hope you don't share your anxieties about fitting in with your daughter. She is pretty cool herself and I hope she stays that way. Best, Kate P.S. Could you please leave the little deaf girl alone. She isn't interested in being checked off your good deeds list either. She'll friend your daughter should she see fit. Dear Kate, Why does your mother give me dagger eyes when I am only trying to offer sound parenting advice at the grocery store. If my child was screaming for the apples in another person's cart I would take him directly out of that store and home for such behaviour. Sincerely, Mom of the Year. Dear Mom of the Year, My mother is well aware of how you would handle the situation. She has been told multiple times by other 'Mom of the Year' recipients. She chooses dagger eyes as a response because to explain to you that you are making matters worse is futile and bargaining is not an option when I am experiencing a meltdown. During these moments I am unable to receive or express any level of comprehendible communication and I get stuck on the object of my intent. My mother understands that she will serve me best if she helps me ride out the emotions until I can become calm enough to move on. If you would pay attention you would see that she usually does this with a strong hug and some redirection and I will soon melt into her arms for comfort and rest because these moments take a lot out of me. Best, Kate Dear Kate, Why do you speak in jibber jabber? My daughter is younger than you and she was speaking in full sentences before she was even born. Sincerely, Future Harvard Mom Dear Future Harvard Mom, I speak in jibber jabber because when I get very excited or very upset I lose my ability to communicate verbally. It's almost like when you feel so inadequate you can't help but lose your ability to tell the truth. We are very impressed that your daughter is so advanced. I hope she never dares fall of the pedestal. It would be a long way down with expectations like yours. Best, Kate Dear Kate, Why do you obsess over things? Why can't you move on. Come stay with me for two weeks and I will straighten you out. Sincerely, Dick Dear Dick, The world can be confusing and scary when communication and socialization are not intuitive. I find much comfort in the things that I do understand. New and unpredictable situations can be overwhelming so I will often seek refuge with known routines and items. Furthermore, I do enjoy learning every detail of a preferred item or topic because I love things with an intensity that will allow me to master the knowledge of whatever I eventually choose. As for your kind invitation, I would need less than one hour to straighten you out, but I am far too kind to make such an offer. Best, Kate Our first annual Sensory Santa was a huge success. Thanks to all who came, all who volunteered time and money to make the event happen and all who consistently read our blog and support us with kind words. Many of us got the coveted picture you see here. Some will try again next year. We are proud of our efforts and we are already thinking about how we can make it even better next year. Please be kind this holiday as many children will have sensory issues around more things than a visit to Santa. Click here to learn more about this topic. Also, this is my Christmas card. I am giving myself a break this year. Happy Holidays Love GoTeamKate "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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April 2022
AuthorGrace and Kate's mom. (Shanell) |