Téa’s eldest sister is a fireball. The kind of kid for whom you always need to be at your best and brightest because her questions, insights and observations rival those of thoughtful, intelligent people many times older than she is. She’s seven. So imagine.
When we opened up the conversation about Autism at our house I tried to edit all the worries, thoughts and perceptions I have and give the girls a clean, non-judgemental, totally PC, and simple description of the word and what it might mean for Téa.
I came up with: “Autism is a word that describes how a person’s brain works. Téa learns differently than you and your sister and so mom and dad are discovering how she learns so that we can help her learn just like we help you learn.” Six months later, during an interview with high school students doing a philanthropy project, Naya shared with them that she worries about her little sister because she is the only person she knows with Autism. And I suddenly saw alllllll the holes that my answer left behind.
I’ve been seeking accurate and age-appropriate ways to explain things better as the girls’ questions and concerns arise. So to that aim, I asked the director and senior therapist at Téa’s school whether Naya could participate one morning, seeing first hand what Téa does in her “school” and meeting other kids on the spectrum. The answer was a resounding, positive, happy-to-have-it-happen: YES!!
This morning, as I drove Nay and tutu to the ABA centre she attends every morning I started to prime her. I had visions of pointing and staring and inappropriate questions. And I was hoping to edit Naya, so to speak, so she would be her most composed, polite self.
“Naya, there are a couple of things I need you to keep in mind for this morning….”.
Me: “…uh……hm……” This was me realizing that what I was about to say was less about her possibly “inappropriate” behaviour and more about my concerns over how the morning would play out.
“….just no pointing please.”
Nodding, Naya says, “o…kay…I can do that.”
Right. End of that conversation. Why? Because if there was ever a time when a kid ought to be free to explore her doubts, questions and concerns it needs to be at a centre where they specialize in helping parents understand and helping kids close the gaps. Because they can do what I don’t yet know how to do as well as I’d like and that was the whole reason for her to attend anyway, right?
Because my own thoughts are jumbled; I’m trying to give my daughter positive messages about difference, discrimination and empathy – keenly aware that what I say shapes what she understands and I am not sure how to tease this all out for myself. So I did what I have only recently learned to do: scale it back. Keep it simple and let things play out. That’s my moto…for today. It changes nearly daily.
So much about what our family is going through is far outside my control and experience. There are moments when I feel a soul crushing weight, and I am too defeated to even attempt to wiggle out from under it. What the heck do I know about coaching kids though this? Apart from a fairly keen sense of intuition (thank God!), I am witness to my every shortcoming in this area and so I’m looking around and asking around and spackling together information and ideas into possible sound bites of reassurance that I can dole out like granddads’ do candy.
So, in keeping with keeping it simple and building my stash of sound bites, let me share a few links and tips I’ve found useful so far in helping our daughters (seven and five) navigate having a sibling with Autism:
1. TOOL KIT: Autism Speaks (both in Canada and the US) have a series of tool kits. This one is for siblings and is a workbook intended to be interactive for us and our kids. http://www.autismspeaks.ca/family-services/toolkits. You will find others on the site for teachers, family, etc. A satisfactory beginning to uncover questions and worries and give first answers.
2. PERSPECTIVE: This video from a young teenage girl named Rosie is fabulous “mini film” and is her worlds. http://youtu.be/ejpWWP1HNGQ. Excellent for giving us and our kids an idea of what it is like for some kids on the spectrum.
3. INFORMATION For moms and dads, friends and family, this post by Michelle Dawson is one of the best I’ve read so far. Not clinical and also not “dumbed down”. It’s a good foundation for understanding the sameness as much as the difference between the typical and atypical brain. http://autismcrisis.blogspot.ca/2006/10/whats-autism-anyway.html
Without a doubt, there are many more resources out there. I invite everyone who is reading this to include useful/relevant links to resources, videos, posts that have helped you or that you have come across. If you are a professional and would like to let parents know about your service, please send me an email and we’ll take it from there to get the word out in a non-solitious way. :)
I’ll let you all know how it went today….