I don't know whose idea this was but it has sufficiently pissed me off. I don't even know who to be angry at. The quote below comes from an article in the Onion, which I realize is a satirical publication. It is meant to be the words of Thomas himself and it reaches a new low in perpetuating dangerous autism myths and picking on a population that needs to focus on treatment and recovery and not protecting itself from assholes like this:
Thomas The Tank Engine A Little Uneasy With His Broad Autistic Following NEWS IN BRIEF • Our Annual Year 2012 • Entertainment • Children • ISSUE 48•21 • May 25, 2012 read the article here http://www.theonion.com/articles/thomas-the-tank-engine-a-little-uneasy-with-his-br,28298/
"Don't get me wrong—I'm grateful that these kids enjoy me so much, but I think the way they're enjoying me is not really so healthy, and honestly not the way I would choose to be appreciated, personally," the anthropomorphic locomotive said between stops on his Mystery On The Rails tour, where he observed that children with autism "outnumber the normal kids by at least three to one." "It would be nice to have some indication that my messages about friendship and sharing are being heard rather than have a pack of totally silent, open-mouthed 6-year-olds stare unblinkingly at my shiny wheels for an hour. It creeps me out."
5. Hug Every Single Person You See: Kate, appropriate or not, loves to give hugs to people. She will crawl into the lap of a stranger if you let her. But, you know what? They always smile. They always instantly feel happier once receiving a Kate hug. So, lesson five boils down to: hug people and make them smile. (feels funny typing this out because I am definitly not a 'hugger'. Unless it is my girls, of course. So, please don't hug me) ;)
4. Don't Judge: Kate likes every single person she meets. She does not care what you are wearing or what you do. She does not care if you have money or not. She does not care if you have a disability or if you've made mistakes. She is happy to be in your company. She routinely greets strangers with a big "Hi" as we walk around town. She is an equal opportunity lover of people. Lesson four: You should be too.
3. Be Sincere: Kate never lies. She never pretends to be something she is not. One of the myths of autism is that they cannot tell a lie and I do not want to perpetuate that myth with this lesson but at the moment she is as authentic as they come. For example, you can say: "Kate, did you put your banana between the couch cushions?" and you will get a "Yes, Mama." and a huge smile. You will always know where you stand with Kate. Lesson three: Be genuine to yourself and others.
2. Give it Your All: Kate doesn't hold back. No matter the situation she gives all of her energy and effort to what she is doing. To Kate, there is nothing she cannot do. She can tackle the gymnastic equipment without trepidation. She can (try to) jump off the boat and go for a swim (while it is moving!) She is fearless (which can be stressful for us, but a quality we understand to be freeing). Lesson two: Don't be afraid to go all out, whatever the task.
1. Live in the Moment: Kate does not regret yesterday or worry about tomorrow. She lives for today. She does not hold a grudge or dwell on the past. She does not fret about what will happen in the future. She is present in the moment. She does not live in her 'head' like some of us can get caught up doing. Lesson one: enjoy the moment you are in. Be present and be mindful.
Part of me was trying to avoid writing this post. So many others have said what I am about to say so eloquently that I am afraid to do an injustice to this topic. For better, or for worse, here goes. Firstly, to the community of Newtown: I mourn with you. I am deeply saddened by these tragic events. In the wake of hearing this unbearable news I heard newscasters make potentially dangerous and most certainly inaccurate links between a diagnosis of autism or aspergers and violent and heartless behaviours. Some of you, may have nodded in agreement upon hearing this. Some of you, may have been desperately looking for an answer as to how someone could do something so evil and unthinkable. Some of you stood up and shouted that this wasn't true and pointed out how alarming a claim like this could be. I want you to know that an entire community is at risk of further stigmatization through these words. Dr. Sanya Gupta was quick to set the record straight when he tweeted the following:
something that should be clarified. there is no evidence of a
link between autism and planned violent behavior. #Newtown
Furthermore, Raising Asperger's Kids, wrote a post on her blog that details, with conviction, how threatening and damaging comments like these can be to the autism community. Click here to read that post. Those in the autism community are defensive right now and rightly so. We are afraid that people will gain an increased misunderstanding of autism and that it will lead to actions and prejudices that can instantly destroy the progress that has been made to educate the public. Please do not let careless comments like these target a population of people that have so much to offer. To those of you that stood up against this thoughtless claim. Thank-you.
Kate could have written much of this letter herself.
I think I added a subscription form to the blog. I may have added a useless link. Please be patient with me. There are a lot of you asking to be on a subscription list and I am afraid I don't really know how to add that to the blog. There is an RSS feed but I am not even sure what that does :). I will keep trying. In the meantime, are there any businesses out there, locally, that I can hire to help me with this site? I would happily hand over admin rights if they could add a subscription list and a pinterest button. I bet that would be simple for some. My head hurts from googling, "how to add a…to your website." I have to admit I am one of those people that say 'download' to much whenever I talk about a computer because I don't know the correct terms. Like, "I just downloaded this email." The reason this site looks nice is because Weebly is an amazing company and their sites are fool-proof.
We wrote a letter to your sister a while ago with every intention of writing a letter to you as well. We have been struggling to write it for many reasons. We did not want it to be a list of things we are sorry for but, instead, a list of things we love about you. Inevitably, though, we have to apologize for some things before we can continue. We are sorry that your treatment has been delayed due to decisions and policies and oversights beyond our control. We are so sorry that there is only one therapy approved in New Brunswick. We are so sorry that the only current option for therapy is one we do not feel is best suited for you. Your dad and I are trying to incorporate other available therapies and treatments but the expense and availability of these things can be overwhelming. You have been waiting over six months to begin your treatment. We are afraid that we have missed a very crucial time for your development. We are terrified we will make a wrong move or a bad decision. We are so grateful for your speech pathologist and your OT and Amanda for helping us get started. We are so grateful for the members of Team Kate who share advice and information and kind words with us. We promise we will not give up. We will be vigilante in fighting to get you access to the most contemporary treatments and everything you need and deserve to reach your full potential. Your father will go toe to toe with anyone to protect you. He has a very refined and educated, "you'll do what I ask and then you'll thank me for it" style of talking to people who hold the power to make key changes to autism treatment programs here in New Brunswick. My style is more like a, "there is nothing fiercer than the mother of a special needs child" kind of thing. We may be new in the 'game' but we are educated, motivated and ready to take on the world. Enough of that now. This letter is meant to tell you how much you mean to us. We want you to know you are the sweetest, most sincere, little girl. You are so easy to love. We have noticed that people are drawn to you. They quickly adore you after only one meeting. We are so glad that we are the lucky ones that get to have you. We love that each night when we put you to bed you call out, "Mama, you ok?", five times before you fall asleep. We love listening to you talk happily to your toys when you wake up in the morning. We love watching you play with your sister and your new kitten, Monty. We love your hugs and kisses. They are so genuine. We love your little behaviours that make you stand out; the 'stims' that people used to diagnose you. These are things that the 'therapy' will try and train out of you. We know you do them for good reason. We know you find comfort in them and we will not let anyone take them away from you until you are ready. We love your bright eyes and excitement whenever we walk into the room. It is a feeling we hope every parent and child feels when they see each other. We love your sparkly blue eyes and blonde curls. We love that it is near impossible to take your picture because you are so busy at playing all the time. We love that you are never mean or insincere. You are so loving and authentic, in a way that I think only a child with ASD can be. We know you will do amazing things. We know you will astound us. We are so proud of you. You are so special. You are so loved. Love Mommy and Daddy xxoo.
There are words, there are so many words for this tragedy. We need you to stand up and use your damn words. Please don't hide behind your social media with promises of thoughts and prayers. Please be active. Please look for a way to stand up and be heard. You do not have to be American to write a letter, make a phone call or demand actions from politicians that can make a difference. It IS a gun-control issue, it IS a mental health issue. It IS a political issue. I will write a letter, I will make a phone call and I will use my words to be heard. m.usa.gov/usa/Contact/Elected
Yesterday, like many of you, we drove to the country for our annual Christmas Tree Hunt. This would be an adventure far outside Kate's daily routine and we knew it could potentially cause some problems for her. If you don't have or work with a child with autism some of these things might seem silly or they might even sound like the overcompensation of an over-protective parent. If you are in the same boat as us, you had to think twice before embarking on your own christmas tree mission this year. First off, we packed food that Kate could/would eat. When large groups gather to cut their trees down for the year there is usually no shortage of sweet treats for the kids. Kate prefers fruit but Grace and I made her some GF/CF gingerbread men just in case. Next, we pack up the car with all the warm clothes we thought we needed (it was sunny and warm yesterday) and head out for the 90 minute drive. Both of our girls are pretty easy to take in the car (with the help of the iPad, that is). Once we arrive at the U-Cut we all pile out to meet the others and begin searching for our tree. I watched Kate very closely for signs of distress or confusion. She doesn't spend any time in the forest and I wondered whether the sights or smells would be hard for her to process. Luckily, she seemed to really be enjoying herself. I know she didn't know why we were there but she ran around the woods with her sister and had a great time. Kate will usually handle new and different situations very well. She gives it all she has for about an hour and then she lets you know that she is done. Kate is still only two and there are times when it is hard to distinguish a sensory overload moment from a typical two year old tantrum. This is how we do it: Kate very rarely has tantrums. These are the 'crying, lay on the floor and kick my feet to get what I want' behaviours that are exhibited by 'normal' toddlers. We look to see if Kate is in control of what she is doing. It is pretty easy to tell. If she can be bribed or distracted, it is a tantrum, usually. She has had a few and we can tell it is not a 'meltdown' (which is a word we use for sensory overload moments because it is more descriptive of what happens) because we can tell when she can control how she is reacting to a situation. Does that make sense? So, when Kate is overwhelmed and can no longer process the information that is being thrown at her, like at a holiday party, or a visit to Costco she melts down and shuts off. She'll cry and try to find a small space to squeeze into or she'll ask for a hug. She started to melt down in the woods yesterday but we about ready to leave anyway and we packed up the car and said our goodbyes. Likely, she had given us multiple warning signs that she was ready to leave but we are still learning how to read them. This Christmas we are doing some research on how to make the holidays sensory sensitive. Something as simple as receiving presents can be confusing for a child with autism. The loud music, the smells, the people, the change in routine are all things that will tire Kate out more quickly than the NT toddlers. We want her to experience all the fun of the holidays and we don't want anyone to change their plans to suit us. We just want to be prepared so that our girls have the most fun this year. I have been reading about Sensitive Santas that, for kids who might find the long lines, crowds, lights and music troublesome, offer an alternative that allows a child to see Santa without all the commotion. Sounds great for every kid, I think. Maybe I will organize that myself next year! Anyway, gotta go, but before I do I wanted to show you this video made by an awesome dad. The numbers are 1 in 88 now and this video was made just a few years ago.
I would love to build a house someday. I love the house we are in but there is something to be said for designing your living space to suit you. For now, though, we are concentrating on designing Kate's therapy/sensory room. We are very fortunate to have the space so now we need the expertise. We are building the room to suit the philosophy of the Son-Rise program but we would also like to include other sensory or therapy related toys that will help Kate connect with her environment. We have watched Kate closely and certain sensory activities provide her with great comfort and she can become very peaceful. Others encourage her to make connections and use language. Let's be honest though, it is just a lot of fun too! What kid would not want one of these rooms. I have posted a couple of examples below. The question we have for the readers of this blog are, what would you include? Which therapy/sensory toy or piece of equipment has been the best for your son, daughter, student or patient? Please comment below or send me a private message. we would really appreciate the help. Thanks
Happy Mail to:
27 Wellington Row
Saint John, NB
Click below for info on getting a custom illustration of your pet, by yours truly!
Grace and Kate's mom. (Shanell)