I guess my title worked. I got you this far. I am such a sucker for titles like: 5 Ways to Train Your Cat, or 10 Things Every Mother Should Know. I think the reason I click on them is because I am looking for that little piece of information that will make my life easier and I want it quickly and in point-form. It just goes to show you how busy we all are. We need our ground-breaking/life changing advice in under two minutes (less than thirty seconds if you can pull it off.) This must be why I am addicted to Twitter. You won't get life changing or ground-breaking advice from me, at least not on purpose. So, here you go, as promised; that list:
5 THINGS THAT BROKE MY HEART
1. Receiving the diagnosis: Yes, I was gutted. We both were. I am not going to pretend that I walked out of there with a new found ambition to fight for the rights of kids with autism everywhere. I walked out of there in stunned silence. I walked out of there as if it was a total surprise when we all know it wasn't. See: the Diagnosis. It sucked and then I cried.
2. Learning that our province would only fund/support one form of treatment (ABA). A treatment that we don't entirely agree with. See: Hey ABA or Not the Lighter Side of Things.
3. Realizing that Grace was getting left behind in all of it and hearing her ask me why Kate still acts like a baby. See: A Letter for Grace.
4. Watching Alex fight so hard to organize Kate's treatment and reach roadblock after roadblock. See: The Brick Wall and Autism Treatment.
5. Waiting and wondering if Kate will ever make friends or be invited to a birthday party. This topic deserves its own post and it is coming but for now: parents out there; listen up. Invite every kid in the class for Christ's sake. How hard is that? And if you know someone who is not doing that, call them an asshole, to their face, with your fist.
5 THINGS THAT MENDED IT
1. Kate's amazing therapists and doctors. There are people that get it. There are really progressive people out there that don't follow the status quo. See In Case I Wasn't Clear Before or A Visit to the OT.
2. Watching Grace take charge of Team Kate and help design the logo and take pride in being team Captain. Watching Grace so patiently love her little sister that it could make you weep.
3. Our amazing family. There is no way we could manage half of what we do without them. They take Kate to appointments and help with her diet. They are helping build her sensory room. They watch the girls so we can go to the movies or out with friends. They support us in every imaginable way.
4. Kate's progress and her amazing little personality. See: 5 Lessons on How to Live A Good Life From a Little Girl With Autism.
5. Every single one of you amazing Blog readers. I swear to God when I started this bog I hoped for around ten visitors. I figured, if Kate's therapists or doctors or close family members wanted to keep up to date on her progress they could check in here. We had a few more than ten visitors. We've had over 4000 hits in about 6 weeks. Thank you so much.
I only taught at the high school level for a couple of years but during that time no student ever stood out like Amy Perry. She was mature well beyond her years and her neatly detailed notebooks made her a teacher's favourite. She had some struggles, as did most of the students at the at-risk school where I taught, but she never complained. She realized she was pregnant weeks before graduation and now is an amazing mother to an almost 5 year old little girl. She quickly turned from a student to a friend and we have kept in touch since she graduated 6 years ago. Amy has diabetes and suffers from a rare condition called dawn phenomenon which causes increased glucose production early in the morning. Without the insulin pump that she wears she would have to set her alarm to wake up multiple times through the night to regulate her levels. She is currently in need of a new insulin pump and as a single mom she, like many, is struggling to makes ends meet. The $8000 dollars she needs is so far out of her reach it is heart-breaking. So we are going to rally around Amy and get her that money one way or another. We are going to start with this gofundme page. Have a look if you can and remember, any donation, no matter how small, is greatly appreciated!
I love, love, love when Kate flaps. Behaviourists look away because you are not going to like this. It is the sweetest of all stims when it is done to show excitement. I see it all the time at work from ASD and NT kids. For Kate, it means she is very happy. I will be sad if/when she loses this stim. She looks like a little blonde fairy about take flight when she flaps. The amount of flapping she does when she sees you is directly correlated to how she feels about you so if she goes off the handle when she sees you then you should be very flattered. I swear she almost gets airborne when she sees her sister after a few hours apart. Try not to smile when you think of that. Please don't look to your toddler and panic if you see flapping. It is a perfectly normal toddler behaviour for many. Lot's of NT people flap: Lottery winners, people reunited with loved ones, women receiving engagement rings. I see it all the time from really, really happy people. It can't be all bad. So, behaviourists, lighten up, and unless it is hurting the child or a danger to others, let them flap. (Note: not all behaviourists have a problem with flapping. Some of them have pioneered the movement to allow for stimming)
"Everything was beautiful and nothing hurt." Kurt Vonnegut Slaughterhouse-Five. I am a Vonnegut fan. I am sure I've read every one of his novels and short stories and countless essays. In all that, this quote has always stood out to me. Fans of Vonnegut might not choose Slaughterhouse-Five as their favourite novel. It is, in my opinion, not his best work but many would disagree. See Mother Night or God Bless You, Mr. Rosewater. What is crucial about the novel for me is this quote, which in the novel is an epitaph but for me has always just been a sentiment that I am drawn to. Obviously, an impossible to achieve existence (which may very well have been Vonnegut's message) but a nice thought just the same. I find myself drawn to simple things since our life took this turn when we realized Kate and our family were going to have some challenges to deal with. It is not a huge stretch for me to simplify my life as I have always been less of a hoarder and more of a purger. So much so, in fact that Alex is regularly worried about what I will get rid of next to satisfy my need to keep fewer things in our house. When something goes missing he immediately looks at me and and I am usually guilty (but seriously, if you haven't used it in a year, what the hell do you need it for?) Even though I seem to pour my heart out on here I am less sentimental than you might imagine, or at least I don't get too attached to 'things'. I like photographs and art and have a very difficult time throwing either away but everything else in this house must know, its days are numbered if we do not regularly use it. Surely, some of you out there are the same way. I know some of you have challenges that you would never speak about, things that take up some much room in your brain that you struggle to fit anything else in. It's the trivial stuff that that has to go. I wrote a post awhile back called "You're Not Even in Our Top Three" and it kind of speaks to why there is no room for extras right now. I can see how this could be annoying and I try to manage it but the more chaotic our life gets the more I want to remove some of the excess. I have not done any research on this topic but I can imagine that most people who are feeling a little overwhelmed might tend to wish for simplicity in other areas of their lives. Sounds pretty text book to me. So, lately, I have been drawn to uncomplicated things and uncomplicated people (if you know what I mean.) I don't think I have room in my brain for anything more right now and I am fine with that.
Happy Mail to:
27 Wellington Row
Saint John, NB
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Grace and Kate's mom. (Shanell)