I know that my feelings about Kate's autism will NEVER be as important as Kate's feelings about herself, but for now, while Kate cannot communicate how she feels, I am trying to tell her story as authentically as I can. I fully understand that my perspective comes with all sorts of prior knowledge, experience and expectation that skews the reality of what Kate is going through, but for now, it is what we have. It is our experience to tell and I take issue with those who would determine that I should NOT tell Kate's story because I don't truly understand her condition and that only an adult with autism is capable of understanding her autism and her potential. Attitudes like this are what give the neurodiversity crowd a bad name. I DO believe that we MUST listen to adults on the spectrum in order to truly understand all the facets of autism. HOWEVER, a parent, whether they are on the spectrum or not, has an unrivalled connection with their child. They have EVERY RIGHT to discuss their child's autism at length. They have EVERY RIGHT to discuss their feelings regrading their child's autism at length. They have EVERY RIGHT to scream and cry. They have EVERY RIGHT to cheer and celebrate. I am getting increasingly frustrated with reading posts about how neurotpical parents have no real insight into autism. Our children are an extension of ourselves. We FEEL every second of struggle and pain that our children go through. We FEEL every triumph, too. Isn't it enough that the insurance companies, 'medical professionals' and schools do not allow parent's a voice in their child's treatment? Do you really want to silence us too? Neurodiversity is becoming an increasingly problematic philosophy to me and that is not the road I wished to travel when I began this journey.
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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 knew there was a potential snow day looming last night. As a teacher, I was cautiously optimistic and careful not to jinx it by thinking about it too much. Sure enough, the radio announced that the kids and I did not have to battle through 40 cms of snow today. For some that might mean sleeping in a little. For us, this is not the case. Alex was up at the crack of dawn to snow blow the driveway so he could get to work (no snow days for engineers) and I made the girls pancakes (I only burned most of them). I could have technically sent the girls to daycare as it did not close today but I like to take the opportunity to stay home with them whenever I can. Working mom of a special needs child guilt and all that crap. Today, in hindsight, the children might have been better off a daycare. Before 10 am Kate was gluing my good paintbrushes to the carpet and Grace had already received a swinging punch to her eye courtesy of her little sister. If you know Grace, you know she did not react because she does not like to rock the boat or upset her sister. We are trying to help her stand up to Kate but she is passive right now. She is such an awesome kid and we are working hard to help her stand up for herself. Anyway, It has been one of those days that usually follows a night like we had last night. On the weekend, Alex and I left the kids with Gramma and went away for the night. It was rest we both really needed but we knew that disrupting Kate's routine would probably lead to some issues. We actually leave our kids with either set of grandparents pretty regularly. We were careful to make sure that our kids would be comfortable staying with family from early on. Kate is quick to wave good-bye when we drop her off and is usually only upset when she is separated from her sister. Still though, it does take some adjustment for Kate to get back into her own routine. So, when we arrived home, Kate had a record meltdown when I tried to change her diaper and then, when it was bedtime, well just forget about it. It was rough, it was violent and it was heart-breaking. These nights are relatively rare but they knock us down when they happen. Kate tries so hard to communicate what she is feeling when she is mid-meltdown (see awesome description of a meltdown vs. a tantrum above, borrowed from Autism Daddy) and she gets so frustrated that all the phrases she knows come out all wrong and she spirals to a point where she cannot calm herself. She screams, 'be ight back, no, go, no, no, no, mama, seep no seep daddy, mama no, I take, I take, be ight back, is ok, is ok." And on and on. When the words do not get her message across she resorts to screaming. On this night, autism sucked. On this night, it was so clearly a disability and not a 'difference' to be celebrated that I was willing to take on the neurodiversity crowd with a vengeance. Once I broke the cardinal rule and cuddled with Kate until she calmed down and fell asleep, I headed for bed myself. After a restless sleep, we all got up and started our day. So, while I type this Kate is squishing her banana into the couch and I am seriously considering getting up and doing something about it. I should be using this time to work on Kate's therapy or help Grace work on one of her art projects. Instead, I put on "Hotel Transylvania" and took ten minutes to update the blog readers. I might even take a few minutes to have another coffee and then I am going to suck it up and get back to work/play. It might be exactly what I need. I have had the majority of this post written for some time. It has been difficult to hit publish on this one. We receive so many encouraging emails from people thanking us for this website and our efforts to advocate for Kate and kids like her. I feel like in order to live up to the nice words that are sent to us I should not be feeling this way. I guess you are about to see my "underface" as poet Shel Silverstein puts it. Kate has been able to fly under the radar, so to speak, until quite recently. She stands out more now. She is getting bigger and her behaviors are no longer easily dismissed as those of a toddler or a two year old. She will be three in May. I am nervous about telling people she is three. Isn't that awful? I should be excited about her birthday but I am scared and Alex is scared too. He won't say much but like me I know he takes comfort in telling people that she is only two. It makes us feel like she gets a 'pass' for the quirky things she does and the meltdowns that can be dismissed with a quick reference to the 'terrible twos' and a laugh. I don't sound much like a kick ass autism mom now, do I? We clearly do not hide Kate's autism from anyone but I don't always have the time or energy to explain her situation or our beliefs regarding her condition in the grocery store lineup. I appreciate the knowing smiles from parents who have clearly had a two year old decide they no longer wanted to be in the grocery store. Will I get those smiles when Kate is ten? Should I care? I am supposed to be championing for her right to be different/special/autistic etc, but if I am being honest I sometimes enjoy the anonymity. It is getting harder to hide her differences. Sorry neurodiversity people, you won't like this, but I don't want to celebrate her differences if it means she is different insofar as she doesn't know how to play with other children or she doesn't know how to listen and make eye contact at the same time. I hate that sensory issues like rough clothing or too many people can be painfully distracting and uncomfortable for her and it bothers me that we still feed her baby food because of extreme food sensitivities and oral motor issues. The list goes on and on of things that I don't want Kate to have to deal with and I sure as hell do not want to celebrate them. I have been vocal about the parts of Kate's autism that I love, like her hand-flapping and her fearlessness but there are behaviours that I am terrified will make her a target for bullies. Kate is already big for her age and could pass for three and half easy. I am afraid for the day she moves up to the three year old room at her daycare. I don't want the kids in her class to notice that she still needs teethers for chewing. I don't want them to ask why she still needs her diaper changed. (Although to be fair, Grace was well over three when she figured that out.) Alex and I are feeling very conflicted with our feelings about this. On one hand, we in no way wish to 'train' her to be 'normal' but also fear for her if she stands out too much. The therapies that Kate receives are meant to help her cope and I believe her therapists all understand our feelings on this matter. On the other hand we take comfort in the moments that Kate fits in and worry when she does not. As Kate nears her third birthday we are nervous that the general public will take away her 'free pass' and start noticing that she isn't 'right'. I feel like I better make it clear that we know Kate is perfect. The members of TeamKate also now that Kate is perfect but we cannot pretend that we are not afraid of the stares and the glares; the well-meaning but maddening advice and worst of all; the exclusive or dismissive behaviours of other children and even adults. In the cut-throat world of mommy-blogging I could be crucified for many thoughts in this post. The neurodiversity crowd would hammer me for wishing Kate to 'fit in'. The "Find A Cure" people will hammer me for not trying to "fix" Kate and some will just call me out on not having the integrity to choose a voice in the autism arena and and stay with it. The bottom line is we are still trying to figure things out. Simple as that. I am feeling down tonight. I know I will have to run into some of you readers in the grocery store and it really makes me not want to write this because I don't want to people to think I am always feeling this way. There are moments when I feel down. I think that is fair to say about everyone in some way. Today is one of those days for me. I may not even publish this post. I am looking around the house and making note of how autism has taken over our lives in so many ways. There is a stack of books on my beside table with titles like "The Autism Revolution" and "ChallengingThe Myths of Autism", among others. Gone are the stacks of books I would pick up on a friend's suggestion or while browsing the bookstore." Our calendar is covered with Kate's upcoming appointments. Much of our conversations are centred around who will be able to take the time off work to take Kate to these appointments. Gone are the notes about swimming lessons and playdates. Our cupboard is full of vitamins and supplements and gluten-free and casein-free foods that we are trying desperately to get her to eat (autism parent's, you know their diet is limited on a good day.) God, do I sound like I am complaining about helping my little girl? Even as I re-read what I just wrote I am feeling guilty because I am essentially saying that Kate's autism is taking over our lives and it is making me sad. How awful is that? How sad she would feel if she knew I was thinking like this. I really don't mind reading and researching and fighting for Kate all day long. I guess, in some ways, I wish I didn't have to. I think the neurodiversity movement will jump down my throat when I say this, but I wish Kate could recover. I wish she didn't have these challenges. Yesterday when Alex and I were driving with Kate he told me how when he is driving her to daycare in the morning she will yell out "GO" when he gets to the stop sign at the end of the road. I made a joke about her getting her licence someday and being a crazy driver. He didn't laugh and when I looked at him I could see his face was so sad. I knew what he was thinking. Will Kate ever get a licence? Will she ever be independent? Kate has some language and we are so grateful for that. But, how far will she go? How come no one will say the words high-functioning to us? We have been throwing that term around at therapy and doctor appointments waiting to see hear it said back to us and it hasn't happened. What does that mean? I am too new in the game to understand all the semantics that are tossed about on the autism blogs, groups and sites. I am getting a sense that people are very emotionally tied to some terms used in connection with autism. I guess 'high-functioning' is that term for me right now. Kate is still so young. We are hopeful that she will gain the skills, once treatment begins, to live a 'normal' life. We struggle with thoughts that she won't. One of the shittiest things about autism is that you are robbed of the comfort you get in assuming your child will grow up and become independent and start a family of their own. I didn't even realize that this idea was a luxury. I know that not all neurotypical kids grow up to become independent members of society with little families of their own but I do know their parents at least can make that assumption when they are staring in their little toddlers face. They can take some comfort in the fact that they are born with the things they need to do this. I'm jealous. I know I should not be wasting time feeling sorry for myself and get back to working on organizing her treatments but it is just kind of pouring out of me now. I definitely have some weak moments and this is one. And now that I have brought you down I am going to cheer you up with this little slideshow of really cute baby animals. You're welcome. *Update: After I wrote this I came across another post in a great blog called "Life His Way". Check out that post here. It answered me in the nicest possible way. |
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April 2022
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