The experts all agree: (and you know when I say 'experts' I mean the mom's and dad's of autistic children and adults on the spectrum) autism is a different experience for everyone. Those other experts: doctors, therapists, teachers etc, they would also agree. So, since we are all in agreement, I have a few questions beginning with: Why the hell do people continue to posit that ABA is the right therapy for EVERYBODY? Why do governments and insurance companies offer funding (if any) for ABA only? I have written about how I feel about ABA before (click here to read about that), but this post is not about my problems with ABA and the methods used under this model. This post is asking rather simple questions: If our children run from one end of the spectrum to the other and beyond, why are we forced to rely on only one method of therapy? Surely, you've heard of some of the other therapies/interventions out there with EVIDENCE behind them: Stanley GreenSpan's Floor Time Son-Rise The Hanen Method The Early Start Denver Model Pivotal Response and Incidental Teaching (Under the ABA Umbrella, see I am not totally unreasonable) SCERTS I am not asking the government to sink money and efforts into a method that hasn't been thoroughly investigated. I understand the scientific method. I understand that you NEED data before you will back a different model. I am trying to tell you that these methods have DATA behind them. They have peer-reviewed studies behind them (the kind you need) and they have anecdotal data collected from parents who GET IT (the kind I need). That should be more than enough evidence for you. As we watch our children grow and develop we are panicking because we cannot access or afford the most progressive treatments out there. Can you imagine how sickening that feels? Please treat our children like individuals. Isn't that the very essence of inclusion in this province? Why do you allow agencies, that segregate our children to a building to work on ABA therapy (which is really IBI therapy) for up to 30 hours a week to exist? Does this not represent everything your inclusion policy is NOT? Why do our pre-school children with autism NOT FIT INTO YOUR FULL INCLUSION POLICY? I've been asking these same questions for a year now and I am still waiting for answers. Anytime now….
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I am dismayed and appalled at the ludicrous position taken (sic) by many other supporters of ABA, who claim that ABA is the only scientifically validated treatment for autism. Not so! That position is not only false, it is absurd. Dr. Bernard Rimland, founder, Autism Society of America On Monday Alex and I will meet with our local MLA Blaine Higgs, who also happens to be New Brunswick's Minister of Finance. We have requested this meeting with the intent to point out the issues facing the autism community in New Brunswick. We would like to highlight the major concerns regarding autism services, ranging from diagnostic issues, early intervention and school-aged children to adults on the spectrum. Of course, this is a huge undertaking and we have under an hour to present our thoughts but nonetheless we are grateful for the audience. Our main issues will be drawn up and detailed for Minister Higgs but I would like to lay them out here as well. I run most of my thoughts, on all things autism, by the readers of this blog and your comments have always been much appreciated. Maybe, you could help me articulate my thoughts for Minister Higgs. If you don't live in New Brunswick, please let me know what works and does not work in your Province/State. I guess it is clear, by my choice of an opening quote, that I feel funding only one treatment (ABA) and touting that treatment as the only evidence-based, scientifically sound treatment for autism is a major concern. If you google "Autism Services in NB" you will come across a few articles detailing how New Brunswick is a leader in the field. They will say things like, "Children in NB receive 20 hours a week of ABA," (15 if you're lucky). "Children in NB can receive a diagnosis of autism as early as 18 months," (it takes that long for some people to even get in to see a specialist) and "services can be implemented in a matter of weeks," (not even close. If you're a loyal reader, you know that our own Kate waited for 177 days to receive service.) Essentially, New Brunswick has been patted on the back in recent years for great strides in implementing autism services and intervention programs. It is time to stop resting on those accolades and look closely at our system once again. Are we truly servicing the autistic population to the best of our abiltiies? (yes, I said autitistic! I have decided that person-first language is currently an argument I am not willing to fight when so many more important issues are looming) The bottom line is: Why do we call it a spectrum and then offer only ONE treatment? Here is what I want Minister Higgs to know: 1. The hospital corporation has been amazing. Our doctors, our OT's, and our Speech Paths have been top drawer. Give them MORE resources and give them above standard training and education in their fields. Hire more of them so they are not spread so thin that they spend their evenings feeling guilty for never having enough time/energy/resources to properly serve their clients. Allow these PROFESSIONALS to be flexible and varied in the services they deliver. They are amazing at what they do and they are in the field everyday. Allow services to be needs-based rather than diagnosis-based. TRUST the medical professionals when they tell you someone could benefit from a therapy. 2. Please, please, please DO NOT put all your eggs in one basket. Allow other therapy options for early intervention. See, Pivotal Response, Floor Time and Son-Rise to name a few. Explore art and music therapy and look at the whole-body approach. Allow the PARENTS and their respective teams to direct the funding to therapies they see as most legitimate and suitable for their children. DO NOT marginalize parents in this process. We know our children better than a room full of autism research scholars. We are vital to setting up appropriate treatments. Listen to us. 3. Boost the services that school-aged children receive. Services dramatically drop off once a child enters the school system. This is unnacceptable. Allow teachers and EA's to be trained in VARIED autism intervention theories. Give us MORE resources and more bodies so that we can feel effective and proud of the work we do with special needs children. 4. Finally, and I don't like to use that word because this, in no way, means that our needs can be fairly expressed in four small paragraphs, but there is a crucial need for policy-makers to implement services that treat autistic individuals across their lifespan. There it is in a nutshell. What am I missing? What can I add? What do you think is imperative? Don't get me started on services for the siblings of kids with special needs because that will have to be for the next meeting! Thanks for listening and please feel free to leave comments below or send me a private message. Before I get into this post I want to say that I in no way wish to perpetuate the myth that special needs parents are always franticly trying to fight for their children. This image of an "I'll do anything for my child and I don't care who I plow through to get there" parent can be damanging to our cause. I have been guilty of fufilling this stereotype but in recent months have found that I have been lumped into the category of "pain in the ass" by some. In some way I deserve that title but not for my efforts to bring attention to issues surrounding autism services or special needs education. I don't want policy-makers to listen to me because they are afraid that I have nothing to lose and will scream at the top of my lungs at how unjust it all is. I want them to listen to me because I am well-read and well-researched; because I have years of experience in the area of special needs education and because I am the mom of a special needs child. I want them to listen to me because I have an army of people beside me that are as articulate and motivated as anyone. People that are ready for the discourse, the dialogue and the debate.** Having said that, there are times when I am not on the ball and that is where you come in. Every time you click on a post or support us with a kind word you are helping us spread our concerns to people outside of the autism community and when everyday people are armed with the knowledge, the issues and the right questions the politicians cannot ignore us. So, thank you so much. Thanks for clicking the like button. Thanks for sharing and most of all, thank you for reading. This is how I see it: In many ways, parents of special needs children can be too (insert list of synonoms for exhausted here) to fight every battle that comes their way. Some battles are even so well hidden we don't even know we should be fighting them. We are so accustomed to fighting for services, respect, attention to the cause and dignity for our children that we might miss some of those battles that seem less crucial. For example, parents who have been waiting more than two years for services for their child might expend every ounce of their energy into getting those services, leaving them little time to ask the question whether the services in question are appropriate, legitimate, and best suited to their child. Maybe some ask all the right questions but if they are like many they become so grateful for any service, after going without for so long, that they might not question the validity or whether it coincides with their personal philosophy or beliefs. Furthermore, many parents of children with special needs* are struggling between the need for privacy for their family and the need to shout their story to anyone that will listen. So, if we get these issues out and into the minds of the masses then we have more people 'working for us' so to speak. It's why awareness is so important. I used to think raising awareness was a slightly more involved initiative than slacktivism but now I get it, I really get it. Clearly, I have chosen to shout my story. Here is why: We cannot do this alone. I firmly believe that we have to put our stories into the collective conscience. The people and the politicians must have the very personal stories of the people before it will become an issue worth fighting for. So, we tell our stories and watch our teams of supporters grow. I don't mean to say that every person with a special needs child need announce their story to the world but I will say that I am so grateful for the many that do. The countless mommy blogs that recount brilliant, heartbreaking, embarrassing, funny and hopeful stories like Homestyle Mama (with a side of autism) or The Autism Art Project and the much rarer but, no less genuine, daddy blogs like Big Daddy Autism and Lou's Land are the reason I decided to enter the world of autism blogging. And I am so glad I did. *this person first language is getting tiring and I am not entirely sure it is worth our energy, and there is an extremely well-written post about this subject which I cannot find at the moment; but that is another battle. See what I mean about all the battles? **I stole this photo from the FB page of Jim Walter. I have linked it back to his page because I don't know the original source. It made me laugh out loud and actually most things he posts do. Kate's therapy has begun! She has a sweet autism support worker and a team we are confident will help her succeed. This kind of thing is always tricky to talk about for me because of how our treatment philosophy differs from that of the province but regardless of that, we are aware of how lucky we are that we live in a province that provides treatment to children with autism until they reach school age. The service dramatically drops off once the child enters school but that is for another post. This post is to celebrate that after 177 days of waiting; our Kate is finally receiving treatment. We are working with her team to modify the treatment plan to suit Kate. We also pay a private therapist to supplement Kate's treatment. Things are starting to come together. While it is not ideal for us, it is a step in the right direction. We will keep fighting to make sure our province expands treatment options but for now we celebrate that Kate has made it off the waiting list. We are so relieved we had a dance party! 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. 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. 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. 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. |
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April 2022
AuthorGrace and Kate's mom. (Shanell) |