If you live in my neighbourhood you may have received one of the bags in the picture. Grace and I worked hard to put them together so we could help Kate deliver them up and down our street. We have asked you to "Light it Up Blue" on April 2nd and we are so very grateful if you do. Thank you for supporting our Kate and so many other children with autism. Click here to see what this campaign is all about.
If you choose not to participate we completely understand. We all have to pick the causes that are closest to us. If you would like more bulbs you can get them at any Home Depot store. Have a Happy Easter.
You may think this post will debate the merits or demerits, as it were, of inspiration porn. It won't. I've seen bloggers get hammered for daring to choose a side in this hot debate. I don't care how you feel about it. Inspiration porn, for those of you who don't know, is that 'feel good' video that circulates the internet making people tear up at the kindness of others or marvel at the courage of a disables person etc. I have included a video below to help illustrate the definition of inspirtation porn. I love this video and if that's wrong then I don't wanna be right (okay, that's a little dramatic, but I do like this video and I did cry).
I understand that videos like this can be a problem for some in the autism community. You can read about the dangers of inspiration porn here or here. I get it. I get the "we are not here for your inspiration" crowd. Really, I do. I still enjoy these videos and stories for reasons detailed by Stuart Duncan "Autism Father" here. So, I guess I'll just lazily let others detail that debate for you using links. Sorry about that.
I wanted to point out that I personally think inspiration porn in the autism arena is ok for lots of reasons. BUT……we have a responsibility to remind people that there is another side to autism. It is terribly irresponsible of us to allow the notion that autism is a misunderstood gift, or a quirky difference in personality. Autism can be a tidal wave of devastation for some families. It isn't always the story of a child who can name all the elements in the periodic table at age three, or the child that, while socially awkward, is accepted by classmates and the community because they 'understand' and 'accept' his autism. This is not to say, that those who are 'mildly' touched by autism are having an easy go if it. I know, as well as anyone, how hard it can be for those high-functioning kids who suffer from bullying and extreme anxiety.
What I am saying is that if we want people to understand autism then we have to share the truth of what it can be. In some cases, autism is the severely touched, non-verbal, self-injurious children that will need constant care for their entire lives. Autism is epilepsy and terrifying seizures. Autism is financial ruin and depression and divorce. Autism is guilt and blame and confusion and fear. I don't have to tell you that parents of the children with severe autism love them every bit as much as you love your children. I do have to tell you that they may never speak, their parent's touch hurts them, eye contact is painful, they bite themselves and bang their heads. They scream, they cry, they struggle to exist. They wear diapers. Their parents must physically restrain them to protect other family members and the child from harm. Can you imagine having to lay down on top of your 6'1", 200 pound son as he melts down like a two year old, in order to calm him and protect the rest of your family?
This is the reality for some people. So please, when you share your videos about autism, remember we are responsible for sharing the whole picture. Below is an example of some self-injurious behaviour in an eight year old boy. Can you see why his mom might not appreciate the celebration of all things autism? Can you see why she might need her story to spread quicker than the feel good story below this example. Guess which one went viral?
If I am being honest I don't really know where Kate sits on the spectrum. I like to think she is high-functioning but as I have said before, I can't get any of her clinicians or doctors to say those words. Maybe, they don't know either. So, maybe she is moderately autistic, which is fine. We will deal. Either way, we know the 'feel good stories' are not the only stories and we'll make sure you all know that too.
We are so pleased to announce that GoTeamKate's first official event is booked. We will be offering a sensory-friendly screening of Monster's University on July 6, 2013 at 10:00am. All children with sensory-issues are welcome to attend with their families and friends. Let me be clear that you do not have to have a child with sensory issues to attend this screening. You just have to be there supporting one that does. Got it? I want all of Kate's "nearlytypical" friends to come out and support her at this event. Please email me for tickets by clicking here.
Here is what you'll notice at our event: The lights will be raised a little, the volume will be lowered a little and the children will be free to be themselves without judgement. We are currently trying to raise money to make this event FREE OF CHARGE. If you would like to sponsor this event there are a few ways you can do so. (I will be reminding people of this event when it gets a little closer but I wanted to make sure people could save the date)
1. You can click the donate button to the right. (If you are a business please send me your logo so I can announce all event supporters on our site.)
2. You can shop at our store by clicking here.
April is Autism Awareness Month, as many of you know, and there is a really easy way to participate. Home Depot is selling blue light bulbs for the charity Autism Speaks. Go grab one or two and put them in place of your outdoor lights for the month of April. (Technically, the campaign asks that we "Light it up Blue" on April 2nd, but around my neighbourhood we are taking the whole month of April to shine a light on Autism). I am excited to take a drive around town to see all those people that are taking part in this campaign. If every house that is affected by autism participated you can bet there would be very few houses that didn't shine blue in April. So, please visit Home Depot and show your support. If you are local, let me know if you are taking part. I want to take the girls for a drive on April 2nd to show them how much support we have in this city.
Please take a second to answer the poll below. Empire Theatres is currently in talks to decide whether sensory-friendly screenings should be offered in our area. This would mean the theatre would lower the volume, raise the lights a little and it would create an understanding that there might be some talking/noise/stimming during the film. GoTeamKate is currently organizing a screening of a children's movie this summer as part of our mission to raise autism awareness (which we hope you will all attend) but we would like Empire Theatres to offer these screenings on a monthly basis as part of their regular schedule. What do you think? Please leave comments below if you have any suggestions or ideas. Thanks.
If you look at our kitchen calendar you'll see a questionably OCD version of our daily schedule. Brightly coloured sharpies are used to detail our coming weeks so we don't mix up our many appointments. Of course, we still sometimes do. In any case, looking at the calendar reminds me of something that bothers me everyday. It is completely dominated by Kate's therapies, doctor's appointments, special needs swimming lessons etc. The only place you see Grace's name on our calendar this month says: Grace: Dentist 11:00am. Ugh, poor kid. It kind of makes my stomach drop at how little of our 'extra' time is dedicated to activities for Grace. It isn't because we don't try to get Grace involved in activities like gymnastics and swimming; it is because she is painfully shy. We know that she is reacting to some of Kate's behaviours and the massive amounts of attention placed on Kate right now as I have written about here and here, so we are feeling especially guilty about her anxiety level. She has been signed up for everything going and she usually spends the time hugging my leg and refusing to participate. We haven't given up on signing up Grace up for things and working on that shyness but we have decided to give her a few months off from the pressure of having to participate in these classes. We know it is important for Grace to work through her anxiety but if anyone deserves a break, it is that kid. So, for now, she attends all of Kate's therapy sessions and doctors appointments with us. She loves to be 'team captain' and she adores Kate like no other. We know that Grace is Kate's biggest ally throughout all of this. So, I guess I just wanted to send a shout out to all the siblings of special needs children. If I have any advice for parents in this situation it is this:
1. These little people have to wrap their brains around issues that adults struggle with. Be honest and forthright as soon as they are old enough to understand. That time will vary and you and only you can make that decision. This is one the books, websites, and medical journals cannot answer.
2. Allow them to be as involved as they want to be. Grace, enjoys attending Kate's sessions (probably because they are play-based) but at some point I fully expect her to ask for a break and she will be welcome to it.
3. Make sure you dedicate special times where the focus is entirely on them. I am taking Grace away for a long weekend soon and it will be a much-deserved Gracie-centered weekend.
4. Allow them to complain about their sibling. In some sense, they may feel ripped off (back off haters, a four year old child does not have to see autism as a gift) and they may need to express how bad it feels. Some children may not want to say it to mom or dad because they can sense you have enough on your plate so please give them a cool 'aunt' or a grandma that they can complain too.
Have any advice to share?
There are moments when I get angry that Kate has autism and we live in a province that I consider painfully behind in current treatment options, as you've read in posts like Autism...You Fickle Motherfucker or The Brick Wall and Autism Treatment, but for the most part we power through the bullshit and enjoy our awesome little girls. However, I have come to realize that I need an outlet, besides swearing at people from this blog, to relieve some of the stress.
Before Kate received her diagnosis I would spend a few days a week at KV Golden Gloves Boxing particpating in Fight Like A Girl. This is a local gym run by Tim Hayes, boxing coach, black belt etc. etc. (click the above link to see more about this gym and Tim's long list of qualifications or visit them on Facebook here). The gym offers ameteur boxing, fitness classes, MMA and jiujitsu among other things.
After Kate received her diagnosis last year I stopped going. If I am being totally honest I used that diagnosis to excuse myself from a lot things. Boxing, eating healthy, and taking care of my general well-being are just a few of things I let slide. It has been a rough year, in my defense, but I know that I have to kick back in.
A few nights ago, I attended boxing again for this first time in over a year, carrying 40 extra pounds (I guess I am a stress-eater) and mountains more stress. I entered the gym with butterflies in my stomach and thoughts of turning around. Would I be able to complete the warm up? Would I embarrass myself on the heavy bag? Would I be strong enough to hold the hand pads for my partner? When we arrived I spoke to Tim about being nervous and he kindly told me that I could work at my own pace and he also reminded me that I was lapping everybody on the couch. Next, I got to work. I started by skipping and tripped up multiple times. I remember the feeling of finally getting the boxing skip down. You know the one where you alternate feet, not the school yard double-foot jump. My rope was tangled up enough last night that I know that skill needs some attention. Still though, it felt really good to be back. I love the workout, as painful as it is, and I love the sport but the real reason I go there is not for the moutain climbers or the squats but for the rounds on the heavy bags and the hand pads. I love the hitting. What a great stress reliever. I don't always picture someone's face when I throw punches (but I'll be honest, I sometimes do, and it feels good), sometimes I just think of something that pisses me off. You don't have be an autism parent to have a shit list. Training at this gym helps get some of the anger out so you can see the issues more clearly. I highly reccommend it.
I struggled and I swore a lot, as the readers of this blog know I tend to do, and I collapsed mid burpee once or twice but I finished the workout and I walked out of there feeling better than I have felt in a year.
Tim also offers a Little Ninja's program for pre-schoolers. I realize this would be Grace's nightmare but our Kate would excel. Tim has years of experience and multiple qualifications in programming for children and I have no doubt he would have no problem handling Kate and her sensory-seeking issues. In fact, the obstacle course possibilities and the padding in that gym would be a sensory-seeking child's dream come true. If you are local, I suggest you go check out this gym. If you are reading from elsewhere (hello people in the UK, my second highest population of readers according to google anaytics) I reccommend finding a place like this to relieve the tension and stress that builds up in all of our lives.
I was playing around with some pictures of the girls today and I decided to pair them up so they could see what they looked like when they were the same age. I threw in some videos and was quite proud of my little digital scrapbook until it dawned on me that people might look at this as a normal vs. autistic child kind of thing.
Then I thought, screw it, I can't control what people think. Here are some awesome pictures of my girls right around the same age. Hopefully, you'll enjoy them for what they are and nothing else.
I also added in a few pictures of the girls together to show how they have grown together. The "tap dancing" videos at the end are very recent.
Some days I want to be a part of the world that celebrates all things autism. The neurodiversity crowd, the group that tells me that Kate is a perfect version of Kate, can draw me in on a good day. A day when she is happy being flappy is a day I can get on board with autism and accept it as a part of Kate. When Kate was initially diagnosed I was drawn to these websites and blogs because I was searching for someone to tell me that it was ok; that she would be ok. They told me that autism made Kate 'different, not less", "a Mac in a world of PC's", and so on (there are a million of these feel good sayings.) Some days I hold onto these thoughts and then there are other days.
The other days are a little different. Instead of celebrating Kate's autism as a genuine and authentic part of my girl, I hate that fucker with everything I have. When she is mid meltdown, I dream of pulling it out of her and setting it on fire. Too harsh? Too bad. When Kate struggles to connect, communicate, navigate, or even just 'be' with us I am angry. Really angry. Angry in the way only a parent can be when someone is messing with their child. Do you know this anger? I am sorry if you do. Do you know that old Mel Gibson movie, "Ransom"? Do you remember the part in the trailer when the kidnapper calls him and he screams into the phone, "Give Me Back My Son!" Yeah that.
Today, I am sending a big fuck you to autism. Maybe tomorrow we'll have coffee, but I sincerely doubt it.
Happy Mail to:
27 Wellington Row
Saint John, NB
I've been a tad overwhelmed with teaching Kindergarten during a pandemic (masks and all) butttttttt, I have not forgotten my sweet patr https://www.patreon.com/sunnyandsinclair
Grace and Kate's mom. (Shanell)