![]() 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.
16 Comments
Kathy O'Brien
2/1/2013 05:49:56 am
Well said Shanell. Always remember that you and Alex are allowed to express any fears and feelings that you have. I believe that is good therapy for you and will assist in furthering your journey in helping your precious Kate.
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Jan
2/1/2013 06:23:35 am
What an amazing post and such a gorgeous little girl. Such brave parents facing such complexities.
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Shanell
2/6/2013 05:15:14 am
Thanks Jan. Thank you for reading!
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Grama
2/1/2013 07:26:24 am
After our Kate was diagnosed, on my birthday, my heart hurt like it never did before. Nothing compared to it , not divorce , not losing my parents, nothing. I cried for months,never in front of you my daughter. My family and my friends tried hard to listen and offer comfort and reassuring words. It did not help. Then one day I was going through some old paper and cards and I found a card that my mother, Kate's Great Grandmother, gave to me a long time ago. It simply said," Susan, everthing will be ok, Love Mum ". Reading her words and seeing her handwriting I knew , Shanell, everthing will be ok. Love you more than you know Mom
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JL
2/1/2013 09:04:00 am
I really admire your courage to be so active for this cause and sharing your story. My family is on our own path with our son who was diagnosed last April at just 2 years 5 months. It is an emotional roller coaster and we all struggle to figure out what is best at every stop. I empathize with so much of what you are going through. I worried as we approached 3 years about expectations of him from others. I realized I would not be able to dismiss some of those behaviours to "being tired", "needing a nap" , "terrible 2"...He still couldn't answer simple questions "what is your name?" or "how old are you?". I had so much anxiety about whether he could or should attend preschool. Would he get potty trained in time? Very thankfully with help and support of family and province funded intervention we continue to learn what works, we see progress and he surprises us when he reaches each new milestone. Since diagnosis I have rarely known what to do or what is best but we just keep trying, forging ahead and hoping the good days keep outweighing the bad days. I am thrilled for how for all their challenges they just keep growing, learning, developing and surprising us with who they can be!
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Shanell
2/6/2013 05:21:52 am
Thank you for sharing JL. It is really nice to hear the stories of other parents in a similar boat. I am so glad he is constantly surprising you with his successes. You must be so proud :)
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2/1/2013 10:12:53 am
I'm so glad you found the courage to hit publish. It is beautiful, and you are right, we do have so much in common. Hugs to you and Kate :)
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Douglas
2/1/2013 11:47:26 pm
There is nothing wrong with having fears. And good for you for voicing them. That is not so easy to do. I think you and Alex are wonderful and I admire you both so much. Kate and Grace are so very lucky to have such amazing parents.
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Shanell
2/6/2013 05:22:43 am
Thank you Douglas. You are such a loyal reader. We always look forward to your comments.
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I loved what you wrote, because it's so honest. I've felt the same way many times. Janey is 8 and has autism, and every birthday is a little hard for me. She was small for her age for quite a while, and that helped her "pass", but now she is average or a bit tall for her age, and it's been years since she could come across as "normal" (excuse the politically incorrect words!) It does get easier to live with that, although it's still pretty tough. Sometimes, though, it's almost easier when she is showing very tough behaviors for it to be quite obvious that she has an issue besides just being loud or strange or spoiled! I just found your blog today and I will be following it. It's always great to find another blogger with a girl with autism!
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Shanell
2/6/2013 05:25:35 am
Suzanne, thank you for sharing about Janey (I love her name by the way). I completely understand what you mean about it sometimes being easier when they appear obviously 'autistic'….there is a certain tolerance we receive that is denied when the child appears bratty/rude/strange etc. That topic deserves a post of its own. Ever consider writing a guest post?? :)
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Jacqueline Patron
2/24/2014 06:53:31 am
My husband and I are currently at this stage with our daughter Elyse. She is on the verge of turning 3...March 24th. You speak the words that are in my head... Thank you for your blog. A lot of your experiences, are what we have been experiencing with Elyse.
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Thank you SO much for posting this! I can totally relate as my son is 2 1/2 yrs old and I know everyone thinks he's so cute right now. Will they think that as he gets older and still shows some of the same behaviors? We will always adore him, but it can't help but be concerning for parents who love their children how the public will receive them? We want the best for them! Thanks again! It helps others (such as me) to feel not so alone.
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Lisa Stewart
12/27/2014 11:07:07 pm
I liked your page and read your blogs because you make me laugh....all the time. You say things I would say and it makes me smile. I do not have an autistic child, but I relate to you on many levels. You are a great writer and honest mom who faces doubts just like we all do. Keep doing what you are doing and lil Kate will thrive!
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Celeste
12/29/2014 02:03:43 am
I promise you it will be OK. My son was 3 when we finally figured out he was autistic (as opposed to just having a major speech delay). He is 7 now. And I understand your fears are very real. We do struggle with other kids leading him to do things that are inappropriate because it's "funny". But overall, the school system has surprised me at how great they have been. I get the sensory overload issues as that is a very real thing in our house as well. But Kate is Kate. She is wonderful in ways that nobody else can be. Never feel like you should have to apologize for her. As for the general public- all you can do is educate people one person at a time. Or not (sometimes I choose not, depending on the circumstances). And sometimes I think that by simply being unapologetic for my son, people may question some of their own judgments. Because it really doesn't matter what others think. All that matters is that you are doing the best you can for your daughter, which you are. We always worry about the future for our children. We can't help it. But take one day at a time, and it gets a lot less scary.
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Lys
1/18/2017 02:35:04 pm
This post really resonated with me as we are experiencing the same with my as-yet-undiagnosed-with-anything 4.5yo. He is still in full-time nappies and relies heavily on a pacifier (when we allow it). One day, the other kids will notice he's not like them. One day, the other kids will notice he talks ad-nauseum about numbers, movie quotes and old Looney tunes cartoons instead of playing Pokemon, Ninja Turtles or just some good old imaginary role play. One day, the other kids will notice he lisps and forms his n's funny. One day, someone will struggle to understand his idiosyncratic language.
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