I received my first payment for a piece of writing today. It's not a lot but it's exciting to me. I have been writing for so long with so much reward from the process itself and comments from you, that to be paid as well is kind of great. I am going to place it in a special account and dedicate all my earning to spending special times with my girls. We are saving for a trip to New York, so there's that.
I'm still working hard to respond to all of your lovely emails. With respect, I was hoping you wouldn't mind if I addressed some of your questions and comments here, as many of you are asking the same things. So, here goes:
I am NOT looking for a cure for Kate's autism. That train has sailed. I originally thought I might search for that elusive son of a bitch but then I thought spending time enjoying the little person she is would be a better bet.
I will not test your cream, drug, potion or chant on Kate. Even though there are a number of Buddha statues in my home, I am seriously grounded when it comes to Kate's treatment. I will need you to provide evidence using the scientific method and anecdotal testimony from families before I will even read your proposal.
I do not believe that correlation equals causation. Please do not share your theories on what causes autism because I have already heard them all.
I do adore your stories. I could read your experiences all day long. It makes me feel like we are all in this together.
I LOVE when people ask me about Kate. I am very clearly not private about this matter. I will not answer questions that I believe to be disrespectful to her or our family but If you want to know the list of foods she'll eat or what helps her settle after a meltdown, feel free to ask.
I am NOT afraid of sharing our story on here and sharing pictures of my girls. Pictures are only pictures. Words are only words. Many of both of mine have been stolen and misused. My girls are safe with me and always will be.
And, I sure as Hell don't feel like I've missed any kind of train.
I'm not perfect. But then, you knew that. The attention showered on this blog over the last few weeks has been wonderful but it has also brought out some criticisms that have been tough to read.
I didn't cry though. I cried a lot this week, but I didn't shed one tear over words that were meant to sting.
I cried when Paul Pierce got a standing ovation when he returned to the garden this week.
I cried when I watched Parenthood.
I cried when I read an email from a mom who is feeling lonely and afraid.
I cried when I received a letter from a dad who is making it work despite no services for his boy
But, I didn't cry when "Not Cute" said:
Absolutely nothing great or appealing about this story. This story only entertain parents who feel it is okay for their kids to annoy people without and care for others. That man could have been tired as hell,but had to play the role society often expect us to play, that of being the good guy. My kids would never behave like that, neither would I allow them. Because I know how insulting some adults can be to kids and not all adults are kids friendly.
When you have your children behaving like this, they grow older believing it is okay to do it as teenagers or even adults. Behaviors like hers lead to bullying, because she believes everyone must accept her tantrums. If she demonstrated her behaviour for a few minutes then we could say it is somewhat cute or acceptable, but for an entire flight? Come on Lady, you even accept the fact that you often apologize for her behaviour and it hasn't dawn on you that your not parenting right?
I didn't even flinch. This is tame compared to some of the other hatred spewed in the comments but it is a good example of why I wrote the letter to "Daddy in 16c" in the first place. I could have just as easily ended up sitting next to this guy.
I stopped reading the comments days ago. So, like Kate, in the picture attached to this post...."Keep talking losers 'cause we can't hear you!"
I realize that for every hurtful comment there are fifty that make my heart swell. I also realize that so many of you were quick to defend us and for that we are so grateful. I would urge you now to ignore the hateful words. The authors are craving the banter and the best course of action, as I see it, it to ignore completely, anyone that would write a venomous thought about a beautiful moment.
By the way. bonus points for anyone who can tell where I got the title (and first line) of this post.
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.
I don't know your name but Kate called you 'daddy' for the entire flight last week and you kindly never corrected her. In fact, you didn't even flinch as you could probably tell that she was not confusing you with her own 'daddy' but instead making a judgment regarding your level of 'safety' for her. If she calls you 'daddy' then you better believe she thinks you are alright.
I sat Kate in the middle seat knowing full well that there would be a stranger sitting next to her for the duration of this flight. I had to make a quick decision and based on her obsession with opening and closing the window shade I figured she might be less of a distraction if she sat in the middle. I watched the entire Temple basketball team board the plane and wondered if one of these giants might sit by Kate. They all moved toward the back. She would have liked that, she would have made some observations that I would have had to deal with but she would have liked those players. I watched many Grandmotherly women board and hoped for one to take the seat but they walked on by. For a fleeting moment I thought we might have a free seat beside us and then you walked up and sat down with your briefcase and your important documents and I had a vision of Kate pouring her water all over your multi-million dollar contracts, or house deeds, or whatever it was you held. The moment you sat down, Kate started to rub your arm. Your jacket was soft and she liked the feel of it. You smiled at her and she said: "Hi, Daddy, that's my mom." Then she had you.
You could have shifted uncomfortably in your seat. You could have ignored her. You could have given me that 'smile' that I despise because it means; 'manage your child please.' You did none of that. You engaged Kate in conversation and you asked her questions about her turtles. She could never really answer your questions but she was so enamored by you that she keep eye contact and joint attention on the items you were asking her about. I watched and smiled. I made a few polite offers to distract her, but you would have none of it.
Kate: (Upon noticing you had an IPad) Is dis Daddy's puduter?
You: This is my IPad. Would you like to see it?
Kate: To me?????? (I know she thought you were offering it to her to keep)
Me: Look with your eyes, Kate. That is not yours.
Kate: Dat's nice!
You: (Upon noticing that Kate had an IPad) I like your computer, too. It has a nice purple case.
Kate: Daddy wanna be a bad guy? (She offered shredder to you and that, my friend, is high praise)
The interaction went on and on and you never once seemed annoyed. She gave you some moments of peace while she played with her Anna and Elsa dolls. Kind of her to save you from playing barbies, but I bet you wouldn't have minded a bit. I bet you have little girls, too.
Not long before we landed Kate had reached her limit. She screamed to have her seatbelt off, she screamed for me to open the plane door and she cried repeating, "Plane is cwosed (closed)" over and over. You tried to redirect her attention to her toys. She was already too far gone at this point, but the fact that you tried to help your new little friend made me emotional.
In case, you are wondering. She was fine the moment we stepped off the plane. Thank you for letting us go ahead of you. She was feeling overwhelmed and escaping the plane and a big, long hug was all she needed.
So, thank you. Thank you for not making me repeat those awful apologetic sentences that I so often say in public. Thank you for entertaining Kate so much that she had her most successful plane ride, yet. And, thank you for putting your papers away and playing turtles with our girl.
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.
I'm writing that book you've been asking for. Well, not all of you have been asking for it. In fact, some of you might not be interested at all. Well, I guess if you were not interested in my book you would have stopped reading this already. God, I hope I don't go on like this in the book. Anyway, I guess to clarify, I am writing two books. I am writing a children's book which is my baby and I adore it and I am just waiting for someone to come begging to be my publisher. I would give you some more info but I would like to figure out how copyright law works before I share my intellectual property. As you know, the internet police are always on a break and I have already had some of my material brazenly stolen.
These books may never make it to print but they will be written and at the very least my children will have a copy. So, if you have any advice on this process PLEASE comment below. I could really use your help. Otherwise, thanks for giving me the courage to write. If it wasn't for your kind comments and observations I would have given up long ago.
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.
Owner and Chief Operator of Balloon Animals Inc.
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.
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!
Joan "This is my second time on a plane" Johnson
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.
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!
Lois "Too old to be trading pins at Disney" Mercer
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.
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!
Donna "I still force my teenagers to go to Disney with me" Wade
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.
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.
Happy Mail to:
27 Wellington Row
Saint John, NB
Grace and Kate's mom. (Shanell)