Meet Monty, our new rescue kitty. He's neurotypical as far as we can tell but we love him anyway. Visit the SPCA if you can. There are lots of cool animals there looking for forever homes. You won't regret it.
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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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April 2022
AuthorGrace and Kate's mom. (Shanell) |