Your dad and I wanted to let you know how unbelievably proud we are of you. You are the most amazing little four year old girl. We wanted to write you this letter because we know this journey has not been easy for you. We are sure, at times, you feel left out. A lot of our life right now is consumed with Kate's therapies, treatments and appointments. You sit quietly and colour in your books while we discuss options and interventions. You wait patiently while we go to, what must seem like, endless sessions and meetings. Through it all, you adore your sister. You never lose patience with her. You don't blame her for taking up so much of our time and attention. We are so grateful that Kate has you. We haven't told you that Kate has autism or that Kate is a little different. I am afraid for the day when you begin to notice on your own. Kate is two and half now and as she grows bigger the behaviours associated with her autism stand out more and more. It is becoming harder and harder to dismiss some of the behaviours as typical for a baby as she grows into a little girl. Your dad and I watch you try and communicate with Kate and you are so patient and sweet. She is saying a lot more lately and you understand her as well as anyone. You answer for her when you think she needs the help. You let her try to speak and you coach her when you think she can come up with the words with a little help. Her funny little quirks make you smile. You are her biggest fan and there is not doubt she cherishes you. We know you will always love your sister and she you, but we wanted to let you know that there will be some days when it is really hard to be Kate's older sister. There are some people in the world that are mean and cruel because they don't understand that it is ok to be different. These people might pick on Kate. They may even pick on you for being her sister. These people may point out the funny things that Kate does and this might embarrass you. Sometimes Kate may do things that bother you, or make you angry. We want you to know that it is ok to be frustrated and sad. We can work through it together. We have noticed lately that you are becoming more and more shy. The more attention Kate draws to us the more you hide away. Your dad and I understand that you are trying to work your way though this too. We will always be there to help you deal with these issues. Sometimes you might need some quiet time alone with just daddy and me and I promise we will make sure this happens. You are so important to us. You are so incredibly kind and smart. There are no words for how much you mean to us. We know you will be brave and always love your sister as unconditionally as you do now. We love you Grace. Mommy and Daddy xxoo
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.
Never take a 'no' from someone who cannot give you a 'yes'. I tried the polite route. I've sent pleasant emails and made cordial phone calls. It's time to knock on some doors. Politicians: You're going to wish you called me back.
This post is not political. It's just a recap of our day yesterday. I wanted to tell you how Grace made out at her Welcome to Kindergarten meeting yesterday. This is the meeting where all of the four year olds in the neighbourhood spend some time at their future school to get to know the teachers and visit their future classrooms. Grace loves all things school related; pencils, books, paper, scissors, you name it. She prides herself on being a good listener. She loves to please the teacher. We had some concerns about her anxiety level as she tends to be shy. (some of you will know that is an understatement) All signs were pointing towards this being a good day as long as I could stay close to Grace as she traveled from station to station to show off her Kindergarten ready skills. Cut to three o'clock when I head to the daycare to pick up Grace. The idea was to sneak in without Kate noticing I was there. I would whisk Grace up the street to her meeting and be back to get Kate before she knew it. If that plan had been successful I guess I wouldn't be writing this post. Kate spotted me through the upstairs window and I could hear her excitement as I walked in the door. That excitement turned quickly into tears when she realized I was not coming to get her. As her daycare worker tried to settle her down and distract her the tears got worse and I could hear the panic in her voice. I could not leave without her at that point. I knew she would not understand their reassurances that I would be back to get her. Kate is very literal (another understatement). So, I decided I would take her with me. I knew I was trading one problem for another, but at least I would be in control right? Once we arrived at the school, and made our way to the library where the meeting was to begin,Grace decided she was going to be painfully shy and hugged my leg. Kate was raring to go and began chasing the scared little Pre-K's around the room. I chased Kate around the school library for awhile. This, I didn't mind because she was happy. What happened next is the kind of thing that is only funny after the fact. It was then that Kate crawled onto a woman's lap, grabbed her by the cheeks and turned her head to face her while yelling, "what doin' now?" Kate perseverates , like many children with autism do. So, she would not stop repeating her question. She was waiting for an answer and the poor woman was, understandably, not sure what Kate was asking, or what to do. I tried to reach Kate quickly to pull her off the woman, but Grace was latched on firmly to my leg and panicked as I moved away from her. So, as I was dragging/reassuring Grace I made my way over to Kate and removed her from the poor woman's lap. Did I mention that the Principal was delivering her speech to the otherwise silent crowd in the library at this point? As I pulled Kate off the woman's lap she let out a cry/scream/roar that drew all eyes towards us, which, as you can image, was devastating for Grace. We quickly left the library, with Kate fighting to get out of my arms, fistfuls of hair in her hands, and Grace wishing she could be swallowed up by the floor. I am not sure what important information the Principal was trying to convey but, needless to say, we missed it. Next, we were supposed to travel between classrooms so that the children could practice a number of different Kindergarten skills, such as number and letter recognition and cutting. We reached the first classroom and as Kate hightailed it for the teacher's scissors, (she likes scissors too much. It could keep you up at night ;), Grace refused to participate in the session. My stress level was peaking and I sent Alex a 911 text asking him to please help. He quickly responsed with my three favorite words: "On my way." Kate emptied the contents of a basket onto the floor and armed herself with a pencil in each hand ready to take on anyone that got in her way. The room was getting hot and I wasn't sure how to handle the situation. Then the nicest thing happened. A teacher at the school stepped in. She noticed that I was struggling to handle Kate and that I could not get Grace to participate. She distracted Kate with some toys and kept and eye on her while I helped Grace work on her first activity. I was so relieved I could have cried. She was so gentle and good with Kate that I had the time to encourage Grace to join the group (even if I did hold her hand the whole time). Soon, Alex showed up, and Kate ran happily into his arms. Crisis over. Grace was more and more comfortable at each station and by the last station was able to sit alone (I stood behind her) and colour and cut out the cutest alligator you ever did see. So, the moral? It is ok to step in and help the mom or dad that is in over their head for whatever reason. I am confident that if that teacher did not step up and help us yesterday some of those Pre-K kids would have received new haircuts courtesy of our girl Kate. So, in the end I'm going to take the W for the day.
I was guilty of this. Are you? Read the full article in New York magazine here:
"Like the actual clinical disorder, the cultural epidemic in scare quotes may have less to do with changes in the world than with changes in those seeing it. To some degree, the spectrum is our way of making sense of an upended social topography, a buckled landscape where nerd titans hold the high ground once occupied by square-jawed captains of industry, a befuddling digital world overrun with trolls and avatars and social-media “rock stars” who are nothing like actual rock stars. It is, as the amateur presidential shrinks would have it, a handy phrase for the distant, cerebral men with the ambition and self-possession necessary to mount a serious run for the White House. When quants and engineers are ascendant, when algorithms trump the liberal arts, when Kim Kardashian and Justin Bieber tweet about the death of Steve Jobs, when the hyperspecialist has displaced the generalist and everyone is Matrix-ed into the Internet, it’s an Other-deriding tool to soothe our cultural anxiety about the ongoing power shift from humanists to technologists. As the coders inherit the Earth, saying someone’s on the spectrum is how English majors make themselves feel better."
If I hear "evidence-based research" or "best practices" one more time I am going to gag. STOP throwing buzz words out to make yourself feel better for standing behind a therapy that is quickly becoming archaic. While I will admit that the quality of ABA therapy varies widely depending on the agency and most importantly the autism support worker; this does not change the fact that other more progressive, relationship based therapies exist (Son-Rise, RDI, etc etc). Behavioural therapies are not the only option for children with autism anymore! These children are more than a set of so-called 'inappropriate behaviours' that need to be trained out of them. The New Brunswick government will provide funding to an approved agency to deliver ABA therapy to a child five years old and under diagnosed with ASD. I am not sure of the actual amount of money the agency will receive per child. I have heard that it is somewhere between $23,000 and $30,000 for each child per year. The child will receive twenty hours a week of therapy at the approved agency. In most areas of the province there is only one approved location. Furthermore, if we are talking about buzz words, here are two: EARLY INTERVENTION. The province promotes early intervention as INTEGRAL to the success of autism therapy and yet Kate is still waiting to receive therapy! We are literally on a waiting list for a therapy that we don't agree with, but is our only option in this province. We want to be able to access the therapy we believe in. We want the New Brunswick government to explore other options or at least let us explore those options. Let us direct the funds for Kate's treatment to the therapies of our choice. I better stop this here before I get started on New Brunswick's extreme inclusion policy. I may sound angry but I promise you I am just motivated. I work with exceptional children all day long as a resource teacher. They , along with Kate, motivate me to ask questions and speak my mind about the current trends and practices in this province.
This isn't easy. At times it is very hard. There are moments when I feel a wave of sadness come over me. Like this morning, we were getting Kate ready for yet another appointment, when Grace decided to tell us in no uncertain terms that; "Kate gets to do more appointments than me and it isn't fair." Poor Grace. We make every effort to make sure she is not feeling left out in all of this but inevitably she feels left out in some way. I should have simply reminded her that she has her fair share of appointments too, with her asthma and heart issues. That sounds more depressing than it is. Grace is doing great. Grace adores her doctors. She assumes Kate is having the same great experiences that she has had. I should have smiled and plugged her into the carseat but I kind of froze and felt a lump in my throat. Alex answered her. I am not even sure what he said because it was really not a big deal and she was pacified and the morning rolled on. I really did quickly snap out of it but some moments trigger that reaction. I am not even entirely sure why it made me sad. I guess I wish that Kate did not have to go to any of these appointments. I wish we didn't have to be reminded constantly of when Kate does not reach milestones or when she acts "differently" than kids her age. I guess I am tired of people not seeing how amazing she is. I am tired of worrying that people won't see her the way the members of Team Kate see her. For example, when Grace receives a birthday party invitation I sometimes wonder if Kate will be invited to parties and that feeling overtakes me again, but just for a moment. These moments are few and far between but they are there. Anyway, enough of that. I really started this post to point out that we are happy. We are very happy. And all the loyal readers of this blog (all 105 of you, I love you) might worry because I tend to vent on here. I wanted to reassure you all that we are good. We are really, very good. I follow only one blog religiously; Rockstar Ronan. It keeps my priorities in check and reminds me daily that we are so lucky. Check out that blog and then try and feel sorry for yourself. So, I wanted to take the time to point out some good things that are happening for Team Kate. Alex is getting things done at a record pace. He makes things happen. He is on top of all of Kate's therapies and appointments. He is in contact with everyone regularly and keeps us all organized and connected. If Team Kate was a baseball team (and those who know me are not surprised at the baseball reference) I would call him the manager. That makes Grace the captain, Katie the Ace and could I please, please be the closer?! Anyway, here is what is up. I wondered one day, a few weeks back, about where the best minds in autism research would be. Two places came to mind; Harvard and Yale. Right?! Is that what came to your mind too? So, I took a page out of Alex's book and made contact with both and asked "What can you do for Team Kate?" Alex, has a way of asking people what they can do for him and they usually thank him for it. I knew it couldn't hurt to try. I talked to some amazing people and things are happening. I will say more when I know more, but just know, Team Kate has gone IVY LEAGUE! As many of you know we enjoy spending time in Boston. Grace, at four, has already been to two Red Sox games, so if our journey takes us down that way we'll feel right at home. Maybe I should have Alex contact the Red Sox and ask them what they can do for Team Kate? Hell, why not. I was going to post the driver's license picture Alex had taken today because it is really bad. It made me laugh out loud at work. But, I'll be kind and post this instead:
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.
Grace and Kate's mom. (Shanell)