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.
Happy Mail to:
27 Wellington Row
Saint John, NB
Grace and Kate's mom. (Shanell)