So, let me get this straight. If you cannot see it, it must not be there? So, because Kate looks like a blonde angel, eating an apple and watching Princess Sophia she cannot possibly have autism? She cannot be developmentally delayed because you hear her speak and aren't children with autism non-verbal? Don't they scream and hit and flap and jump and spin and otherwise make themselves known so we can rush to their sides and immediately start with behavior modification strategies that will extinguish such unnatural behaviors? Why do you scrunch up your face when I tell you she has autism? Why do you look at her and say; "Really? I don't see it. She seems normal to me?" Is that supposed to be a compliment? Should I breathe a sigh of relief and call my husband up with the good news? "Guess what, honey? Joan says Kate doesn't look like she has autism. We are in the clear!" What are you looking for when you look at her face? Must you see something to believe in it? What about gravity? Newton gets a pass but Kate has to prove it? I see the autism in Kate every single day. Some of you do too, when you are privy to those physical manifestations that she'll treat you to at the grocery store or at the pool. The inappropriate hugging (I know you love it, though), the babble, the verbal stimming, the jumping, the flapping and yes, even the screaming and biting. There are many other ways autism manifests in Kate. Some are amazing and some have us reaching for a box of wine. Either way, Kate has autism. She will always have autism. You may not see it on days when she negotiated her way through her tasks like a champ. You may not see it when her father and I expertly redirect her before it comes bubbling up and overwhelms her little body. You may never see it because you don't want to. You may see some of Kate's behaviors in your own children and it may send you into a state of denial that keeps you forever defending her right to be neurotypical. I love that place of denial. I know it well. Yes, there is such a thing as being on the 'quirky side of normal.' It is even hip to be there, these days. This is not the case for Kate. She has a neurodevelopmental brain disorder. Accept it. We have. She is still perfect in every conceivable way.
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I'll be honest. I do massive amounts of reading about autism spectrum disorders and when it comes time to read for pleasure I would rather avoid, Lisa Genova's "Love Anthony" or Jodi Picoult's "House Rules" (I generally avoid Jodi Picoult anyway. (Is it just me? Sometimes, I think she writes specifically to offend me.) I tend to gravitate towards authors like Chuck Palahniuk and Douglas Coupland. I won't lie, I also have a stack of Sookie Stackhouse books in my closet. Anyway, you can see my taste runs a little differently than some moms in my demographic. So, with SO MANY well meaning people asking me to read Kristine Barnett's, "The Spark" and "Chicken Soup for Raising Kids on the Spectrum", I figured I had better give them a go. I started with "Chicken Soup" because it seemed less daunting than reading about one more autistic savant. I am very wary of popular culture and the media falsely portraying autism as feel good stories about high functioning kids with talents abound and I know "The Spark" is about nurturing genius so I thought I had better hold off for now. I figured it might piss me off. However, I won't comment anymore on the book because I have yet to read a word of it. I am frustrated that our culture depicts children with autism as little professors or savants. If I had a child on the severe end of the spectrum I would be incensed at this irresponsible message. Hell, I work with children on the severe end of the spectrum and I am incensed. Every time I turn on the television there is some feel good story about overcoming the symptoms of autism or an inspirational story about some child prodigy on the spectrum. Some of them bring me to tears because like you, my heart swells with hope. I am no stranger to 'inspiration porn' and enjoy many of these stories for the what they are: 'one family's experience'. The danger comes when you hear your friends and neighbors say, "I saw this video about an autistic child that couldn't talk and then his parents stopped feeding him milk/soy/wheat/sugar/dyes etc and he became a math genius. (I feel I can make that snarky reference because I have Kate on a GF/CF diet, but I do not expect it to cure her, only provide her with more comfort in her belly etc.) The internet is flooded with blogs like mine that use 'feel good' moments, and 'glimpses of normal' from our children to draw readers in and spread awareness. I am guilty of this too. We spread awareness all right, but at what price? Please feel free to snap me back to reality when I get caught up in the 'inspiration' of it all. The more I think about this, the more I realize that we are painting a false picture of the realities some parents are facing and this is not only irresponsible but dangerous. I have written about this in the past here. The politicians will stop paying attention to us. The policy makers will believe we are OK and forget about us believing we are busy learning to connect with the little intellectuals we are raising. I won't spend much time talking about the book. I will say I was pleasantly surprised that a fair chunk of the book was dedicated to kiddos with severe or classic autism. After reading the first third of the book I thought, Oh no, this is going to paint autism as this pretty picture of quirky aspie kids. I am NOT saying that being on the high-functioning side of the spectrum is easy. In fact, these are the kids that are mercilessly bullied because their disability is mostly invisible. I have written a post about this that sits in the archives of this blog and I hesitate to hit publish for many reasons. One of which is, I do not wish to further divide people within the community but I do wish people to know that children who are so-called high-functioning are in trouble. Big trouble; unless we stop pretending they are all geniuses in wait. So, you see, this message of 'greatness' and 'hidden talents' is damaging for all our kiddos. Let's try and get this right. I don't know if Kate will someday blend in with her peers and "pass" as they say, but I know I sure as hell won't write a feel good story about it. You might as well take some of the parents in our community and say, "see, my child was all wrong but then with therapy and love and God or (some such shit) we had a miracle and she became 'normal' or we 'tapped into' her genus; it was there all along. This can happen for you too!" The reality is, this can't happen for every child on the spectrum. It is cruel and thoughtless to behave as if it will. The expectations are too much. Many of our kids have severe cognitive and physical impairments. They won't go to college at 14, or at all. They won't get married and have children of their own. They hit themselves. They wear diapers once grown. I guess that doesn't make for good reading or good television. I really do appreciate the lovely comments you all leave me on this blog. There are days when I have blogger's regret after posting something and without fail someone shares some encouraging words that make it seem ok. Having said that though, I want to be completely honest about how some of the "you're a great mom" stuff can make me feel. It makes me feel a bit like a fraud. Actually, it makes me feel like a liar. I write these posts with every intention of sharing an honest picture of our life but I inevitably have the power to pick and choose what I share with you. I tend not to focus on the parent failures like plugging the kids into their elecronics on a Sunday morning because I had to much wine the night before or forgetting to feed Kate supper because she would never ask for it (yes, I did this). I love my girls more than words and I provide for their needs and I work hard to make sure Kate gets the best services around but that is small part of what I am. I think I am an ok mom Maybe even one of the okayest mom's around. But still just ok. I let me kids watch too much TV and I let my little autistic daughter stim on the IPad for far longer than I should. We rarely eat together as a family, mostly because we must prepare three seperate meals at supper time. I take the kids out to eat way too much. I let them whine to get their way. I buy them things to make myself feel better about my shortcomings. I compare them to other kids. I can be impatient and bossy. I give in to tantrums and sit on the floor and cry during meltdowns. I ask far too much of my five year old when it comes to dealing with her little sister. I constantly hear myself say, "I'm tired." I would like to get through one day without saying that. The list goes on and on. I would be this kind of mom even if Kate didn't have autism. I am not more tired or more stressed because we have more to deal with. We don't have 'more' to deal with. We are dealing with our lot. You all have your own issues. There are lots of days where I wake up and immediately look forward to bed time. I don't exercise enough and my diet has gone to hell. I am generally not a great mom or a role model for mom's of special needs kids. I drink wine and I swear (regular readers won't be shocked by this confession). I enjoy being rebellious and deviant in some ways. I love to challenge the status quo and I have a seriously bad attitude some days. I am full of faults. So, when I read things like, "you're doing an amazing job, " I have to wonder if you knew the real truth of it all would you be saying that? I think I run pretty average in the mom department. Should I blame the impossibly high standards society sets for moms? Should I blame the standards I have set for myself? Not even a little bit. I am flawed. I am learning to deal with it. Anyway, I hope you understand that I am not being ungrateful for the kind words left in the comments section. I just wanted you to know that I am not that mom. That one you keep talking about after you read my posts. I am not even close. In fact, I don't think she exists. 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. To all of you who wore blue, shone blue, and bled blue on April 2nd, thank you. Thank you from the bottom of our hearts. I know some struggle with the notion of what 'awareness' can really do for our children. I have read countless blogs that level frustration at organizations that run campaigns for autism awareness. Ideally, we would like you to advocate, educate and promote acceptance for the autism comminity. This does not mean there is no place for awareness. There is a need for it. Here is what it can do: First if all, making people aware of numbers like 1 in 88 or more currently 1 in 50 puts our cause in the social conscience. When you changed your light bulbs to blue or wore blue or posted something on Facebook about Autism Awareness Day, you added to the conversation. A conversation that we desperately need to keep going. So, when someone negates your efforts with terms like "slactivism" or makes snide remarks about 'what the hell a blue light will do for children with autism' you can refer them to me. I got this one. I wrote about it here. The dialogue you initiated by taking part in Autism Awareness Day is crucial for our children. Secondly, you annouced to the world that you support those of us dealing with the diagnosis and all the ups and downs that come with it. You told the world that you are willing to learn and show compassion for all of those affected. Sadly, the autism community itself can become very divided over the issues of therapies and diagnoses; over cures or acceptance; but the one thing that we should all be on board with is the support from the community around us. Yesterday, our family felt the love. Our street shone blue and our neighbors more than proved they were behind us as you can see from the pictures below. Alex and I took a drive on Tuesday and it really lifted our spirits to see our neighbors, families and friends light up their houses. Our neighbors across the street had five bulbs in! We were so impressed we just stopped and stared. They probably didn't know about Kate's diagnosis until we dropped off a package on their door with a blue light bulb in it and a short explanation about the "Light it up Blue" campaign. They certainly came through for us last night along with every other person on our street. 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. I have written before about my frustration with the marginalization of parents in the autism arena. There is judgement abound among the public and even within the community itself. The way I see it we are placed, by our own hand and others, into one of a few, superficial categories. Having said that, I sincerely hope, that by detailing them here I do not further perpetuate the stereotypes but instead draw attention to the fallacies that exisit. Firstly, The Warrior Parent, who is kicking ass and taking names. Don't get in their way because they will plow through you. I have been guilty of taking pride in falling into this category on occasion but I have come to realize that it is a dangerous place to sit. Credibility is difficult to hold onto when we are seen as a tunnel-visioned, battle-ready soldier ready to demolish the injustices in the autism world. The people that fall into this category are often articulate, strong, well-read and researched and they see little value in wasting time with things that don't directly involve improving autism services for their child and others. The very terms we use to praise these parents can pigeon-hole them into a category that often can intimidate policy-makers and worst case, deter our efforts. If you consider yourself a "warrior parent", please understand I am, in no way, suggesting you tone it down. In fact, I am going to kill it for Kate and I don't plan on making any apologies. I am asking that we re-think how we view the parents that scream it from the roof tops because if it wasn't for them we would have very little reform at all. Their strength and resolve should not be reduced to a caricature of what they really are. The next category is The Emotional-Wreck Parent, I also fall into this category on occasion. I am sure every parent does. I have been know to break down at odd times and may appear less than stable to the lucky diners next to us in the restaurant. These parents appear to be struggling with coping and holding it together. It would seem that all their thoughts and ideas are wrought with raw emotion and a desperateness that, like in the case of the "warrior parent", can turn people off and avert our cause. Wrong! These parents, the ones that get emotional, which again encompasses most of us, are as eloquent and expressive as any with their concerns and desires. They take a more authentic route and allow their feelings to show and can do more good sharing their heartfelt experiences than any autism scholar out there. The objectives for these parents are no different than any other. It is unfair to diminish their feelings as 'emotional' and therefore less than valid or legitimate. These parents see clearly with the help of their emotions, not in spite of them. The final category, and I know there could be many more and sub-categories too, is The Private Parent. They could be seen as removing themselves from the game because they choose to quietly take their family on the autism journey. These parents are our secret weapon. They are no less passionate about their children and they are educated and aware. They do not have to write a blog, or publicly battle policies they don't agree with but rest assured they are quietly and skillfully advocating for their child and that makes a difference for all of us. They will watch and read and intellectualize everything before making choices and when they do speak out it is powerful and game-changing. I know many of our readers fall into this category because we have so many visitors that never comment. I respect this. I get it. Obviously, I know that autism parents are far more diverse and intricate in their thoughts, feelings and actions than these three categories would allow. What do you think? Do you fit into any or all of these categories. Are there categories I have missed? Please share. I love hearing from you. 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. I have been hearing that all this talk about autism and a connection to violence is being perpetuated mainly by the autism community who simply cannot let it go and continue to scream out about how ludicrous this claim is. Let me tell you that this is bullshit. While it is a difficult decision to decide whether to repost such a vile thought as is seen in this screen shot, in the end we choose to repost as a warning. We continue to speak out because unless we are preparing our 'teams' to defend us when things like this Facebook page pop up we do not feel like we are protecting our children. For now, they hide behind their social media but we have teams behind us. We have teams of people that would squash haters like this to protect Kate and kids like her. Jon Stewart, of The Daily Show, is raising a son with autism. He is much quieter than some of the other celebs on this list but still does huge amounts for autism charities like Comedy Central's Night of Too Many Stars which raised over three million dollars for autism research this year. Dan Marino considers his son recovered from autism. Watch this clip to see his story. The former quarterback of the Miami Dolphins has even started a centre dedicated to helping children with developmental disabilities. Toni Braxton's son, Diesel, was diagnosed when he was three. Learn more about her story here. Baxton is active in many autism charities, namely Autism Speaks. Jenny McCarthy is pretty much a household name in the autism community. She puts her celeb power behind Generation Rescue. a website dedicated to helping children recover from autism. McCarthy is vocal in the theory that vaccinations can be linked to rising numbers of autism diagnoses. McCarthy, Like Dan Marino, considers her son, Evan, recovered from autism. Aiden Quinn, who currently stars in my new favourite show, Elementary, has a daughter with an ASD diagnosis. Like, McCarthy, he is a firm believer that over use of vaccines has lead to the rise in autism diagnoses. Read more here. Holly Robinson Peete is one fierce autism momma. She is active in many charities and runs the HollyRod Foundation which raises funds and awareness for Autism and Parkinson's research. Peete's eldest son, RJ, was diagnosed with autism. His twin sister, Ryan, co-authored the children's book, My Brother Charlie for siblings of a child with autism. I still cannot get through it without crying. Ernie Els' son Ben was diagnosed a few years ago and is considered severely touched by autism. The golfer began the Els for Autism Golf Challenge and is very involved in autism charities. John Travolta son Jett, who sadly passed away in 2009, had an autism diagnosis. Jett's mom Kelly Preston opened up recently about her son's autism. Read more here. Former NFL quarterback, Doug Flutie's son Doug Jr. has an autism diagnosis. Flutie began the Doug Flutie Jr. Foundation for Autism to provide support for parents dealing with this diagnosis. |
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April 2022
AuthorGrace and Kate's mom. (Shanell) |