I wanted to introduce you to an idea that I believe is going to change the way we interact with charities. I was introduced to The everydayhero platform recently and it is exciting to see that we now have a tool to track our Giving Footprint™. So, essentially Everydayheros is giving you the chance to track both your financial and your physical contributions to the charity of your choice. Ultimately, you will choose your cause, set your goal and track your progress. It's simple and extremely motivating. The everydayhero platform is transforming the giving experience by offering people a way to track and see all the good they do for causes they are passionate about. The platform not only allows people to raise and donate money to nonprofits, but it takes the notion of giving a step further. It allows users to raise money and track their Giving Footprint™ to measure, monitor and amplify everything they put forth when giving to a cause. (https://preregister.everydayhero.com/us/) GoTeamKate is partnering with everydayhero.com to give GoTeamKate readers a chance to win one of two Fitbit FLEX™ WIRELESS ACTIVITY AND SLEEP WRISTBANDS. ($99.95) This slim, stylish device is with you all the time. During the day, it tracks steps, distance, and calories burned. At night, it tracks your sleep quality and wakes you silently in the morning. Just check out the lights to see how you stack up against your personal goal. It’s the motivation you need to get out and be more active. (http://www.fitbit.com/flex) Click on the link below for giveaway guidelines. To be entered into the giveaway please like GoTeamKate on Facebook and share this post via Facebook by March 18th, 2014. On March 19th, 2014 two GoTeamKate followers will be chosen at random (by Kate, via names in a hat because we are high-tech like that) and notified via Facebook that they have won a Fitbit bracelet. Your Fitbit bracelets will be sent out as soon as I receive your address.
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"That's mine!" Kate screams as we walk by anything she is remotely interested in. I am guessing she has heard children at her daycare call out this phrase when another takes a preferred toy from them. I am glad that Kate has made this connection and is attempting to use this phrase to request something but clearly we have some work to do in terms of when and where to use it. Lately, those two words have been preceding some pretty serious meltdowns. Episode One: Kate does a fantastic job at her swimming lesson and I take her to the toy store to look at the train table before we go home. There is a little boy playing with the trains. Kate lunges for him and removes all of the toys from his hands and says, "That's mine!" The boy looks at his dad and says "Daddy, that boy took my trains!" I immediately liberate the trains from Kate's unnaturally strong hands and hand them back to the boy. "She's a girl." I say. "She just loves to dress like a firefighter and wear a ninja turtle hat." The boy had stopped listening to my explanation the moment the trains hit his fingers but I finished anyway. Kate lunged for the trains again. The boy, in a true 'fool me once' move, tucked the trains behind his back and looked up at Kate, a little defiant and a little afraid. Kate stopped for a moment, jaw clenched, to consider her next move. I could see that she felt wronged (that is the way she sees it and no amount of explanation from me about 'fair' and 'who had it first' will help us now) and her ability to regulate the anger that comes with that is non-existent at this point. I swooped in with the best re-direction move I have. "Kate, look what I found!" Her head whipped around and I had to quickly produce something more interesting than those trains. I scanned the rack beside me and spotted a dinosaur puppet. Bingo! I had saved the boy and his trains. I made ridiculous dinosaur sounds and chased Kate away from the train table until she became equally enticed by the Groovy Girl doll beds. The boy and his father made their purchase and left without ever knowing how close they had come to a Kate tornado. The smile on that boy's face is my reward. No really, the lack of a bite mark on his cheek is my reward. Episode Two: We are walking through the shopping centre on the way to the car. Kate spots a lady pushing a baby carriage coming towards us. I am carrying her and when 37 pounds of pure muscle decides to jump out of your arms and beeline for a newborn you feel it. (I know she can walk on her own. Did I mention the meltdowns?) Kate is quick, and she reaches the carriage before me. Two possible scenarios run through my mind in the seconds before I reach her and the carriage. Either she will immediately remove the toy from the baby's hands while screaming, "That's mine!" at the tiny infant. Or she will emancipate that baby from the carriage itself. I catch up to Kate just in time to see her reach into the carriage and gently touch the baby's blanket. She looked up at the smiling mother and said: "That your baby?" Good girl, Kate. We are getting there. 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…. "You want rums Mama?" Kate's eyes stare at me in anticipation because even though it sounds like she is offering me much needed alcohol, she is actually asking if she can play the drums. Kate hasn't figured out pronouns yet so she often offers you the very thing she wants to do, which can get hairy when we are talking about two preschoolers. We are downstairs in our neighbour's basement. The rest of the crew are upstairs enjoying a bbq. Kate has led me down downstairs with the threat of a meltdown I didn't want to face today. She had been down before and she remembers there are instruments for the game rock band in the basement. She remembers the drums. Kate picks up the drumsticks and smashes them together with a "One, Two, Three, Four!" and begins to beat on the drums. Huh? What? Where did she get that? I listen a little more closely. Does she have rhythm? I can't be sure because I sure as hell don't have any. I listen again. Wait a minute…..I think she might. I look around for a witness. Damn everybody else is upstairs. Kate's attention span is pretty non-existent so I know this is it. I left my phone in the wagon. Shit. Fast forward to her first day of music lessons the following week. Kate flitters from instrument to instrument in total Kate style. She never focuses long enough for someone to distinguish whether she gets the idea of the instrument or not. I, of course, urge her to the piano. She, of course, wants the guitar. I have my camera ready because as much as I sometimes criricize the media's obsession with all the feel good stories about the fewer than 1% with savant capabilities, I suspect Kate has some hidden musical talent that will blow us all away. As I watched her struggle to focus on her teacher's instructions and come back constantly for the squeezes she needed to get through her session, I realized that Kate's super talent is the amount of self-regulation it took her to meet our expectations that day. Being in that strange room with a new person and being surrounded by so much of the unknown would present to Kate as a monumental task. She nailed it with only minor issues. That is totally enough for me. The lesson went 'well', relatively speaking. Her teacher sang to her and sweetly ignored Kate as she screamed, "Stop Singing!" We can't wait for next week. As you may have seen on FB, Kate is currently looking for a lead singer for her band, "The My Little Pony Project." Apply below. It has been awhile since I have updated you on our therapy room. I originally wrote about designing the room here. We have added some pretty cool things and the girls are loving it. Kate has therapy in this room as often as we can make it work and we even let them have free play in here (which is against the advice of some of the experts.) I guess I am getting pretty good at going against the advice of the 'experts' lately. I hope Kate will thank me for that one day. The first new addition to the room is the mural painted by local artist Gerry Collins. Thanks Grama. He is a family friend and he painted this mural using a vintage 1920's colouring book for inspiration. We wanted it to look like a child's room but we didn't want a typical cartoon mural. We also knew better than to tell an artist what to do. We left Gerry upstairs for a few days and we were left with an absolutley priceless piece of art. Monty even appears in the painting! Next, we added the seahorse mirror that Kate's aunt and uncle bought her. Thanks guys! The girls adore it. They love to stand in front of it and make funny faces. Kate and I can practice facial expressions and she loves to talk to herself in the mirror. Finally, we added the pink gym mat. Thanks Grampy. One of Kate's favourite ways to stim is jumping. She could jump up and down over and over all day. (I know, I need to add one of those mini trampolines with a safety handle, right?) This mat allows her to relieve some of that sensory-seeking behavior. She can crash and roll and fall as much as she likes and she loves it. Grace, although less rough and tumble than her sister, also enjoys playing on the mat. It is great for the practical uses of physio and occupational therapy exercises but it also good for just plain old play. If you are thinking of putting a room like this together for your child please keep in mind that Kate is primarily a sensory-seeker. She likes pressure and rough play. The room has been designed to help Kate meet sensory-seeking needs like spinning or jumping. She can, at times, be a sensory-defender. When she is feeling this way (usually a holiday or a birthday party can bring this on) I would not bring her to this room. At those times she is better served to go to her bedroom with one of us which is very calming and simply decorated with little distraction and soft lighting. Alex and I do not claim to be experts in sensory room design but we are here if you have any questions about designing one of your own. When I started this blog I made a decision for Kate. In reality, I made a decision for all of us. I decided that I would share the details of Kate's autism diagnosis and our struggles and triumphs surrounding it. I don't remember if it occured to me to use fake names or try and protect our identity in some way. Once, I began reading the other autism blogs, I realized that pseudonyms were common and it began to nag at me. Have I shared too much? Will Kate be angry someday? Am I making things harder for Grace, who shys away from attention? I have friends who would never put their children's pictures on facebook, let alone pen a diary detailing the best and the worst of it all. I understand and I respect that. I guess I have chosen another route. It rolls over in my mind sometimes, though. Will the things I write come back to haunt us? Will Kate always live with us or will Kate be applying for school one day and upon googling her name will the admissions office decide she might not be the best fit for their program. Will Grace be teased for the silly stories I post. I am a teacher. I know what kids are capable of in terms of cruelty. Sometimes, I say to myself: I will stop when they are old enough to decide if they want to be a part of this or not. Sometimes, I feel like I better stop now. Most of the time, however, I feel like this: Kate is in desperate need of the best services out there. All children with autism are. This blog allows networking and learning and is good for the whole family. The community we are building around this site is crucial to accessing the best of the best in terms of services for Kate. I have made priceless connections and learned so much from the people that follow this blog. In the last six months ( has it only been six months?) I feel like I have written a post doc on autism. I have read a stack of books taller than me (and I am tall) and it doesn't compare to the knowledge I have gained talking to other parents of children with autism. The pros far outweigh the cons. The members of Kate's team read this blog and they have insight into where Kate is in her development and information like that doesn't manifest in hourly office visits. The members of her team understand our philiosphy as a family, in terms of austim treatment, because I have made sure it is clear without a doubt. And one of the best parts; they work hard because they have grown to know and love Kate. Truth be told, another motivator for working hard is that they probably don't want me to write about them if they don't :). So, when the guilt creeps in, I try and remember the connections and the love that have come flooding in, all in support of Kate and our family and get to typing once again. We are so pleased to announce that GoTeamKate's first official event is booked. We will be offering a sensory-friendly screening of Monster's University on July 6, 2013 at 10:00am. All children with sensory-issues are welcome to attend with their families and friends. Let me be clear that you do not have to have a child with sensory issues to attend this screening. You just have to be there supporting one that does. Got it? I want all of Kate's "nearlytypical" friends to come out and support her at this event. Please email me for tickets by clicking here. Here is what you'll notice at our event: The lights will be raised a little, the volume will be lowered a little and the children will be free to be themselves without judgement. We are currently trying to raise money to make this event FREE OF CHARGE. If you would like to sponsor this event there are a few ways you can do so. (I will be reminding people of this event when it gets a little closer but I wanted to make sure people could save the date) 1. You can click the donate button to the right. (If you are a business please send me your logo so I can announce all event supporters on our site.) 2. You can shop at our store by clicking here. If you look at our kitchen calendar you'll see a questionably OCD version of our daily schedule. Brightly coloured sharpies are used to detail our coming weeks so we don't mix up our many appointments. Of course, we still sometimes do. In any case, looking at the calendar reminds me of something that bothers me everyday. It is completely dominated by Kate's therapies, doctor's appointments, special needs swimming lessons etc. The only place you see Grace's name on our calendar this month says: Grace: Dentist 11:00am. Ugh, poor kid. It kind of makes my stomach drop at how little of our 'extra' time is dedicated to activities for Grace. It isn't because we don't try to get Grace involved in activities like gymnastics and swimming; it is because she is painfully shy. We know that she is reacting to some of Kate's behaviours and the massive amounts of attention placed on Kate right now as I have written about here and here, so we are feeling especially guilty about her anxiety level. She has been signed up for everything going and she usually spends the time hugging my leg and refusing to participate. We haven't given up on signing up Grace up for things and working on that shyness but we have decided to give her a few months off from the pressure of having to participate in these classes. We know it is important for Grace to work through her anxiety but if anyone deserves a break, it is that kid. So, for now, she attends all of Kate's therapy sessions and doctors appointments with us. She loves to be 'team captain' and she adores Kate like no other. We know that Grace is Kate's biggest ally throughout all of this. So, I guess I just wanted to send a shout out to all the siblings of special needs children. If I have any advice for parents in this situation it is this: 1. These little people have to wrap their brains around issues that adults struggle with. Be honest and forthright as soon as they are old enough to understand. That time will vary and you and only you can make that decision. This is one the books, websites, and medical journals cannot answer. 2. Allow them to be as involved as they want to be. Grace, enjoys attending Kate's sessions (probably because they are play-based) but at some point I fully expect her to ask for a break and she will be welcome to it. 3. Make sure you dedicate special times where the focus is entirely on them. I am taking Grace away for a long weekend soon and it will be a much-deserved Gracie-centered weekend. 4. Allow them to complain about their sibling. In some sense, they may feel ripped off (back off haters, a four year old child does not have to see autism as a gift) and they may need to express how bad it feels. Some children may not want to say it to mom or dad because they can sense you have enough on your plate so please give them a cool 'aunt' or a grandma that they can complain too. Have any advice to share? Some days I want to be a part of the world that celebrates all things autism. The neurodiversity crowd, the group that tells me that Kate is a perfect version of Kate, can draw me in on a good day. A day when she is happy being flappy is a day I can get on board with autism and accept it as a part of Kate. When Kate was initially diagnosed I was drawn to these websites and blogs because I was searching for someone to tell me that it was ok; that she would be ok. They told me that autism made Kate 'different, not less", "a Mac in a world of PC's", and so on (there are a million of these feel good sayings.) Some days I hold onto these thoughts and then there are other days. The other days are a little different. Instead of celebrating Kate's autism as a genuine and authentic part of my girl, I hate that fucker with everything I have. When she is mid meltdown, I dream of pulling it out of her and setting it on fire. Too harsh? Too bad. When Kate struggles to connect, communicate, navigate, or even just 'be' with us I am angry. Really angry. Angry in the way only a parent can be when someone is messing with their child. Do you know this anger? I am sorry if you do. Do you know that old Mel Gibson movie, "Ransom"? Do you remember the part in the trailer when the kidnapper calls him and he screams into the phone, "Give Me Back My Son!" Yeah that. Today, I am sending a big fuck you to autism. Maybe tomorrow we'll have coffee, but I sincerely doubt it. 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. |
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April 2022
AuthorGrace and Kate's mom. (Shanell) |