 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 HEART1. 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 IT1. 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.
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 I am feeling down tonight. I know I will have to run into some of you readers in the grocery store and it really makes me not want to write this because I don't want to people to think I am always feeling this way. There are moments when I feel down. I think that is fair to say about everyone in some way. Today is one of those days for me. I may not even publish this post. I am looking around the house and making note of how autism has taken over our lives in so many ways. There is a stack of books on my beside table with titles like "The Autism Revolution" and "ChallengingThe Myths of Autism", among others. Gone are the stacks of books I would pick up on a friend's suggestion or while browsing the bookstore." Our calendar is covered with Kate's upcoming appointments. Much of our conversations are centred around who will be able to take the time off work to take Kate to these appointments. Gone are the notes about swimming lessons and playdates. Our cupboard is full of vitamins and supplements and gluten-free and casein-free foods that we are trying desperately to get her to eat (autism parent's, you know their diet is limited on a good day.) God, do I sound like I am complaining about helping my little girl? Even as I re-read what I just wrote I am feeling guilty because I am essentially saying that Kate's autism is taking over our lives and it is making me sad. How awful is that? How sad she would feel if she knew I was thinking like this. I really don't mind reading and researching and fighting for Kate all day long. I guess, in some ways, I wish I didn't have to. I think the neurodiversity movement will jump down my throat when I say this, but I wish Kate could recover. I wish she didn't have these challenges. Yesterday when Alex and I were driving with Kate he told me how when he is driving her to daycare in the morning she will yell out "GO" when he gets to the stop sign at the end of the road. I made a joke about her getting her licence someday and being a crazy driver. He didn't laugh and when I looked at him I could see his face was so sad. I knew what he was thinking. Will Kate ever get a licence? Will she ever be independent? Kate has some language and we are so grateful for that. But, how far will she go? How come no one will say the words high-functioning to us? We have been throwing that term around at therapy and doctor appointments waiting to see hear it said back to us and it hasn't happened. What does that mean? I am too new in the game to understand all the semantics that are tossed about on the autism blogs, groups and sites. I am getting a sense that people are very emotionally tied to some terms used in connection with autism. I guess 'high-functioning' is that term for me right now. Kate is still so young. We are hopeful that she will gain the skills, once treatment begins, to live a 'normal' life. We struggle with thoughts that she won't. One of the shittiest things about autism is that you are robbed of the comfort you get in assuming your child will grow up and become independent and start a family of their own. I didn't even realize that this idea was a luxury. I know that not all neurotypical kids grow up to become independent members of society with little families of their own but I do know their parents at least can make that assumption when they are staring in their little toddlers face. They can take some comfort in the fact that they are born with the things they need to do this. I'm jealous. I know I should not be wasting time feeling sorry for myself and get back to working on organizing her treatments but it is just kind of pouring out of me now. I definitely have some weak moments and this is one. And now that I have brought you down I am going to cheer you up with this little slideshow of really cute baby animals. You're welcome. *Update: After I wrote this I came across another post in a great blog called "Life His Way". Check out that post here. It answered me in the nicest possible way.  Kate could have written much of this letter herself. mom-ology.ca/wordpress/autism-at-christmas-please-be-understanding  Dear Kate,
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.  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    Three reasons why you shouldn't mess with me: 1. I am the mom of a special needs child. I will chew you up and spit you out to help my daughter. 2. I am amped up and I am ready to fight. I fight all day long to make sure Kate is getting all the help she needs and deserves. 3. I will go further and push harder because I have more on the line. To the general public; You are awesome, you are kind and you are very, very patient. To the very few who give us dissaproving looks, know-it-all smirks and unwanted advice; please educate yourself. To the asshole at dairy queen who very noisly and obviously moved tables because Kate was 'bothering' him; Go To Hell. She was talking to you and she was having a hard time moving on until you awknowledged her. She perseverates. She can't help it. You're lucky my fist didn't perseverate on your face. To the lady who sat in front of us at the movies on Sunday. You are a class-act. Thank you for not turning around and giving us the 'look'. Kate made it through half the movie and we were very proud. She jibber jabbered happily at the screen and I know it was distracting for you and your children. Your children were as well-mannered as you and did not turn around either. I could have hugged you but then if I did I guess you would have had good reason to give me the 'look'. I am not going to walk around in fear of judgment from the few. There are far too many like the lady at the movies that make this just a little bit easier. Look at that face. She loved it and so did her big sister.   Dear Polititians, policymakers, medical professionals and the like,
Wake up. Autism is an epidemic of disasterous proportions. It is a crisis we will not let you ignore. There is a powerful autism community rising up around you. We are an army; strong and motivated. Don't placate us with offers of outdated therapies meant to make us grateful. Fight with us. Demand answers. Know, that if you are not affected today, you will be someday. I hope you don't have to watch your own child miss milestone after milestone. I hope you don't have to wonder if your daughter will ever be independent let alone get married and have a family. I hope you don't have to wonder if your son will ever speak. I hope you don't have to wonder if he'll ever make eye contact or give you a hug. I hope you never lie awake at night wondering what will happen to your child after you die. I know those that promote neurodioversity would not be pleased with me calling autism an epidemic. Please know that you are in the minority. Fewer than ten percent of cases of ASD could be called aspergers before it was recently removed from the DSM-5. And even fewer than that could be considered so high functioning that they would have genius level IQ's. The vast majority of our children with ASD experience developmental delays that are devestating. I am not asking you to post something to your status for one hour or wear a t-shirt to raise awareness. These things are fine and meaninful in their way. I am asking you to be an active participant and help make changes to therapies, treatments, programs and attitudes. I am asking you to be angry and to get fired up and refuse to take no for answer. I am asking you to imagine for a minute that it was your child. Does the thought make you feel gutted? Now, wipe that thought away and breathe a sigh of relief and remember we can't do that. We don't have that luxury. Don't fail us.  It is a full time job to manage Kate's therapies, interventions and diet. Moms and dads out there dealing with a child with a 'disability', am I right? Don't get me wrong, I love that Kate has a team. I love every single person on her team. I just wanted to point out that managing the team is a feat. Let me give you an example of a week in Kate's life. Keep in mind that she attends daycare all week as her father and I both work. Monday: 5:00pm-6:00pm Therapy with A. Tuesday: 8:45am Dr. S. Wednesday: 8:45am Speech Therapy Wednesday 3:00pm Occupational Therapy Thursday 3:00pm Meeting at the Autism Resource Centre Thursday 5:00pm Therapy with A. This does not even include the floor time therapy Alex and I try to fit in as much as we can or her gymnastics which helps her gross motor skills develop. Could you handle all these appointments on top of your full time job? Kate can't either. She gets tired. All of these people are extremely accommodating and will try to make these appointments at times that are convenient for two working parents but ultimately this is what it looks like. So, it leaves Alex and I relying on the kindness of family to help out and also extremely understanding work places that make accommodations so that we can make these appointments. I will be the first to admit that Alex is doing the brunt of these appointments. As a teacher, it is difficult to step out for an hour and return. I would like to be at every single appointment. I am afraid I am missing key information but that is why we have the team. You may wonder why would we subject Kate to so many appointments. The research is clear, however, that immediate, early and intensive intervention is crucial to Kate's development. I know some children are not offered these amazing resources at all. We are so lucky to have them. She does love attending these therapy sessions. Many of them are based on the floor time model and consist of lots of imaginative play. Some of it we pay for ourselves and some of it is through the hospital. I really cannot say enough about how wonderful all her therapists, clinicians and doctors have been. I have been clear that the wait time, in this city, for implementing the early intervention is unacceptable but that is another post. We are turning our bonus room over the garage into a therapy room for Kate. Again, huge thanks to the team members for helping out. I will post pictures when it is done. She is going to love it and she is going thrive up there. Anyway, you can see we are pretty busy with appointments during the week. The next most time consuming thing is Kate's diet. I could write a whole post on the theories behind biomedical treatments for autism but I'll save that for another day. Essentially, Kate is on a Gluten Free/Casein Free diet, which means she does not eat wheat or dairy products and we have also eliminated, to the best of our ability, artificial dyes and ingredients. If you have a child with autism you know that their diet can already be extremely limited. I make Kate gluten free bread twice a week and we supplement her diet with essential vitamins, omega 3s, pro-biotics and a supplement we call 5M because I could not pronounce it, let alone spell it. I will not go into anymore detail than this but as you can see Kate's diet can keep us busy as well. Not to mention, that we have another child that needs as much love and support as her sister is receiving. So, if we seem distracted and forgetful or distant, it's because we are all those things right now. We are not feeling sorry for ourselves and I hope this does not sound like a complaint. Alex and I always like to call each other out if we catch the other complaining about a First World Pain. These are problems, that are not really problems. For example: "I make too much money to qualify for student loans" or "I got in the shower and forgot my towel." We are all guilty of making comments like this. Lately, our priorities have been different so when I say, "you are not even in our top three," I am not trying to be rude. I am just trying to point out that we have a lot going on. We all have to set priorities and figuring out what we are going to let bother us is important. Let the little things go. Concentrate on what matters, what is meaningful and what is helpful. You'll be happier, I promise.   I realize that autism therapy can be a very polarizing issue. There are the die-hard behaviourists who live and breath ABA, those that promote neurodiversity and take offense to therapies designed to "train the autism out of someone", and the rest of us that fall somewhere in the middle. I've made it clear that I do not want my daughter subjected to endless, repetitive trials that aim to train her in "appropriate behaviours" determined by so-called NT's. I want to speak to someone who understands autism as a neurological challenge, rather than a behavioural one. I want her to be motivated to connect with us through a combination of effective therapies. This wish list keeps leading back to the Son-Rise Program. A program that teaches us that stimming has meaning and value. A program that does not reduce a child to a set of behaviours. For us, I think it is the right fit. Others may feel differently, and that is fine with me. I am only asking that, as Kate's parents, we have a say in which therapy Kate receives. If I had to guess why there are not more people publicly stating there wish for more options for treatments for their children, I would say that in some cases, receiving the diagnosis can be overwhelming enough. Try to wrap your brain around hearing that your child has an intellectual disability and no one really knows why or how it happened. It's devastating and the people that offer the therapies in this city are lovely for the most part and sometimes it is easier to let them take control because they have experience and they can help. Sometimes it is easier to do what we've always done. But, this can be dangerously passive. Fuck the status-quo. Is that too harsh? Harsh is watching effective therapies and ideas passing us by. It is so easy to accept what we've always done. I know with numbers like, 1 in 88, that every single one of you out there loves someone, or knows someone who loves someone with autism. Please ask questions and please challenge the authority. That is just good advice in general I think.
 Our girls love dogs. What kid doesn't? Really, what person doesn't? I've always thought you cannot trust a person that does not like dogs. It's strange isn't it? To not like an animal so loving and loyal. Did I just alienate all dog-haters from my blog. SEE-YA! Anyway, our Kate has a special bond with dogs and most recently I think I figured out why. I have a lot of experience working with children with autism. The one thing they seem to all have in common is a sincerity that you will not see in NTs. (remember that means neurotypical) Kate has this sincerity and it is the most authentic part of her personality. She loves without conditions or demands or insecurities. She is a little happy, sweet, loving, sincere girl. When you meet her; this is obvious. She doesn't know how to fake it, hide a feeling, or pretend she is something that she is not. I think she loves dogs because they too are truly sincere. And the dogs; they love her back. When I began researching possible therapies for Kate last summer I came across a website that helps pair autism service dogs with children that could benefit from this service. There is a lengthy application process, followed by a home interview, travel to Ontario to be trained on how to work with a service dog and an eighteen month waiting list. We thought this was perfect for Kate so we began the application process. We are currently waiting for our home interview. The dog is provided at no cost to us if we are approved. However, we are encouraged to fundraise if we can. Of course, we will, and we'll have a great time doing it. Alex is already talking about a charity regatta down at the yacht club with a silent auction and a band. Big sister Grace, the most amazing big sister in the world, would like to auction off some of her artwork. What do you think? Starting bid anyone? Kidding. That is getting a little ahead of ourselves. Let's see if we can get Kate approved first. Good Night and GOTEAMKATE.  |
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