Sometimes, I might act like I know the ins and outs of all things autism. Sometimes I might seem like I am completely lost. This is the nature of raising a child with special needs. It is like a cocktail of fear, anger, confusion, strength and love. Somedays, some ingredients are stronger than others. I write this blog while I balance precariously on that line between total insecurity and steady confidence. I might appear to have a handle on which therapies are legitimate and which are not; which are progressive and worthy of our children and which are archaic and harmful I might even seem like I have it handled pretty well. You might think I know what I want. This is not the case. I have written before about feeling like a fraud. We make choices and decision using the best information we have at the time. I am quick to make choices about treatment but that doesn't mean I don't experience anxiety about my choices. We have agonized over the choices or lack thereof. I have stayed up nights and played out different scenarios in my head. I dread the thought of regretting one of these big decisions. However, these decisions still must be made. We cannot go back and forth on what might be best for Kate because the clock is ticking. So, we make our choices and we hope they are the right ones. Don't all parents feel this way to some extent? I have lucid moments where things seem clear. During these times I know what I want and I want it delivered. These moments are rare. Mostly, the complexities of this diagnosis are overwhelming. The massive amount of information surrounding autism, treatments, attitudes and philosophies is too much to sort and classify. The misinformation alone keeps me up at night. The readers are so full of compliments for me and I love it but I want you to know I don't have this figured out. I flounder around reading like a maniac. I read medical journals and books and blogs. I read peer-reviewed studies and the heartfelt words of mom's and dad's who 'know.' I ask people questions about their experiences. Sometimes after the kids are in bed I set out to read the entire internet. The bottom line is there is so much I don't know. There is so much I still have to figure out. The experts don't 'know' either, you know. They pretend to know. They answer with confidence but they don't really 'know.' There are more contradictions in the literature than there are agreements and this leaves us further confused. Don't even get me started on the divides within the community. They are most the heartbreaking and confusing of all. I am writing this because I get many emails from mom's and dad's who are afraid. Parent's who ask me questions I have no right to answer. I want to answer. I want to help but I am unqualified to answer. I can tell you my story and my experience but that is all I have for you. My heart aches for these parents who are beginning their journeys. My heart aches for the parents who have been trying to figure this out for years. I feel gutted that I can't take away your worries. There is too much I don't know. There are a few things I do know, however. These are the things I know for sure: I know you cry in your car because it is the only time you are alone. I know you feel guilty for fantasizing about how life might have been different. I know you worry about neglecting your other children. I know you cringe when you hear the "r" word. I know you worry about choosing the wrong therapy/intervention/treatment. I know you feel guilty because you cannot afford treatment. I know you feel angry that treatment is not available. I know you sometimes resent people who don't 'know.' I know you feel awful when you compare your child(ren) to others or to each other. I know you have a hard time thinking about the future. I know you worry all the time. I know you feel guilty all the time. I know you are so proud of your child(ren) I know you celebrate milestones that others could never understand. I know you know your children are perfect. I know you adore your child(ren). I know you would still choose them. I know they would always choose you.
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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. 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) |