I have had the majority of this post written for some time. It has been difficult to hit publish on this one. We receive so many encouraging emails from people thanking us for this website and our efforts to advocate for Kate and kids like her. I feel like in order to live up to the nice words that are sent to us I should not be feeling this way. I guess you are about to see my "underface" as poet Shel Silverstein puts it. Kate has been able to fly under the radar, so to speak, until quite recently. She stands out more now. She is getting bigger and her behaviors are no longer easily dismissed as those of a toddler or a two year old. She will be three in May. I am nervous about telling people she is three. Isn't that awful? I should be excited about her birthday but I am scared and Alex is scared too. He won't say much but like me I know he takes comfort in telling people that she is only two. It makes us feel like she gets a 'pass' for the quirky things she does and the meltdowns that can be dismissed with a quick reference to the 'terrible twos' and a laugh. I don't sound much like a kick ass autism mom now, do I? We clearly do not hide Kate's autism from anyone but I don't always have the time or energy to explain her situation or our beliefs regarding her condition in the grocery store lineup. I appreciate the knowing smiles from parents who have clearly had a two year old decide they no longer wanted to be in the grocery store. Will I get those smiles when Kate is ten? Should I care? I am supposed to be championing for her right to be different/special/autistic etc, but if I am being honest I sometimes enjoy the anonymity. It is getting harder to hide her differences. Sorry neurodiversity people, you won't like this, but I don't want to celebrate her differences if it means she is different insofar as she doesn't know how to play with other children or she doesn't know how to listen and make eye contact at the same time. I hate that sensory issues like rough clothing or too many people can be painfully distracting and uncomfortable for her and it bothers me that we still feed her baby food because of extreme food sensitivities and oral motor issues. The list goes on and on of things that I don't want Kate to have to deal with and I sure as hell do not want to celebrate them. I have been vocal about the parts of Kate's autism that I love, like her hand-flapping and her fearlessness but there are behaviours that I am terrified will make her a target for bullies. Kate is already big for her age and could pass for three and half easy. I am afraid for the day she moves up to the three year old room at her daycare. I don't want the kids in her class to notice that she still needs teethers for chewing. I don't want them to ask why she still needs her diaper changed. (Although to be fair, Grace was well over three when she figured that out.) Alex and I are feeling very conflicted with our feelings about this. On one hand, we in no way wish to 'train' her to be 'normal' but also fear for her if she stands out too much. The therapies that Kate receives are meant to help her cope and I believe her therapists all understand our feelings on this matter. On the other hand we take comfort in the moments that Kate fits in and worry when she does not. As Kate nears her third birthday we are nervous that the general public will take away her 'free pass' and start noticing that she isn't 'right'. I feel like I better make it clear that we know Kate is perfect. The members of TeamKate also now that Kate is perfect but we cannot pretend that we are not afraid of the stares and the glares; the well-meaning but maddening advice and worst of all; the exclusive or dismissive behaviours of other children and even adults. In the cut-throat world of mommy-blogging I could be crucified for many thoughts in this post. The neurodiversity crowd would hammer me for wishing Kate to 'fit in'. The "Find A Cure" people will hammer me for not trying to "fix" Kate and some will just call me out on not having the integrity to choose a voice in the autism arena and and stay with it. The bottom line is we are still trying to figure things out. Simple as that.
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Lately, we have been trying to get Kate out more. She has every right to be out enjoying what our city has to offer. And Grace deserves to be out with her family doing normal family things. So, we went to lunch this weekend. We always choose a booth. Autism parents: can I get an Amen? If you have a child with autism or any toddler you'll know why a booth is a must. We are taking the win on this one because she was very well behaved, despite having her feet on the table. There was a point when she was stimming pretty strongly and running her hands up and down the blinds over and over. Alex looked at her and said: "Why don't you just wear a sign, Kate." I laughed so hard I spit out my drink. You have to understand it was said in total love. In fact, we do have t-shirts and we obviously don't mind the world knowing that Kate has autism but today she was really acting out the stereotype. It kind of makes us laugh because we try in some ways to dispel some of the myths of autism, like, that all children with autism are the same and then Kate behaves like a case study from an old text book. What are you going to do, but laugh? The photos below explain another reason we are calling today a win. The blissfully quiet, long drive home. I have not exactly been private about our experiences in the autism arena. For example, I write down every thought that crosses my mind in this blog. Even still, being in the newspaper seemed a little scarier to me. Even though I check our stats and I know this blog has tens of readers :), I was feeling very exposed while I waited for the article, we were interviewed for, to come out. I adored the reporter and that wasn't my worry but I was worried that people might see the article as a 'woe is us' type of story, where we complained about how difficult it was to raise a child with autism. This is certainly not the impression we wanted to make and I think the article does a good job of painting a fair portrait of a day in our life. We sat down with the reporter for over two hours in Alex's office. Looking back, we likely overwhelmed her with all that we had to say. It was almost as if it was bursting out of us. "Autism is NOT a mental illness. Autism does not equate violent behaviour. The sky is the limit for Kate and all children with autism. It is ludicrous that our province would posit that there is only one 'evidence-based research' approved therapy." And on and on and on. The reporter asked for 'a day in our life' and we found it almost impossible to talk about a day in our life without talking about all these emotionally charged and inherently political topics. She was kind and patient and she listened to us talk over one another trying to get the information out. It would be impossible for any one piece of writing to detail the highs and lows of this ride. I guess that is why I am keeping track here. Ultimately, I know that any attention drawn to the cause is good. We can't afford to have misinformation out there. We need to set the record straight. And, while it is true that even those of us raising children on the spectrum disagree on many issues (see Hey ABA, and She's Flappy When Happy) we would all agree that the world should know how amazing our children are. This issue is so personal to each family and it can be difficult to talk about. Every experience is unique. Every family is on a different path. Well-meaning people can sometimes say the wrong things. (I once brought up the Red Sox dismal post-season at a funeral because I didn't know what to say.) For example, recently, when I was in the hardware store picking out paint for Kate's therapy room the nice lady working was trying to sell me on purple. I explained to her that it was not for a little girl's bedroom but her therapy room and the colour was meant to be soothing because she has autism. Her reaction was pretty intense. She told me what a tragedy and a shame autism was. I had to ask her if she thought I had said cancer? Don't get me wrong, it isn't easy for any of us. Some struggle more than others but priorities please! If you get to tuck your babies in at night then you have not experienced tragedy. See Rockstar Ronan to get your priorities straight. I visit every single day. So, all in all, we are happy with our newspaper debut and we hope people see that Kate is not a set of behaviours to be dealt with but a real little girl with an amazing big sister and a family trying to pave the way for her. 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. Christmas day was great. It is obviously a tough season for kids with sensory issues but Kate handled it like a champ. Grace was as sweet and thoughtful as ever and worried more about delivering presents to others than opening them herself. She was even kind enough to tell you what was in the gift before you opened it :). Kate opened a few presents but was mostly finished with that business soon after we woke up. If you asked her to open a present she would say, "no presents, no pictures" so you can see she was done with me chasing her with the camera too. Kate adored her marble tower and her little Buzz and Woody bobble heads but nothing made her happier than her scissors. Kate received five pairs of kids scissors and she was thrilled. She has a thing for scissors (don't worry, we always supervise) and she spent the morning clutching them. She did try to cut the cat's fur but we managed to intervene. Otherwise, she happily cut the wrapping paper while her sister opened her gifts for her. I was worried she might want to take the scissors to bed but we managed to put them away and tuck her in with Buzz Lightyear instead. Grace's favourite present is a book I bought for her about Venice. She is fascinated by a place that has streets made of water and she wants to go there someday. The four of us will go when the girls are older for sure. I think her second favourite present is her new dress and tights from Zara Kids from Uncle Brendan. She is really putting the pressure on for me to let her wear it but I want to save it for a special occasion. That does seem silly though doesn't it? I should just let her wear it. How many chances will she get to wear it before she grows too big. This photo of Kate was taken later on in the day at her Grandparents house. Sometimes, Kate will pause and zone out for awhile. We have learned that this is the first warning that she is ready to go. Clearly, she was finished with Christmas. Soon after this photo was taken we packed them up and took the girls home to bed. All in all it was a very successful Christmas. We have learned a few things from our experiences this year. Most importantly, less is more. Kate was overwhelmed by the massive haul under the tree. She opened maybe three presents and then chose to spend some downtime with her Buzz Lightyear. Next year, we are going to make sure we tone it way down. In fact, there has been talk of spending Christmas somewhere tropical and skipping the excessive gift exchange altogther. Don't tell Gramma! 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. Kate could have written much of this letter herself. mom-ology.ca/wordpress/autism-at-christmas-please-be-understanding 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. |
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April 2022
AuthorGrace and Kate's mom. (Shanell) |