Monday, December 5, 2011

How not to worry about looking different?

Us parents of children with special needs can worry a lot  about what others think of their childrens' unusual mannerisms and behaviors .

Over time, we develop our coping mechanisms-

We build defences  to cope with what we think people are thinking.

Here is how I learned to stop worrying.

Two  years ago we were at a friends house for Thanksgiving

 One of the guests was a teacher who is a retired Special Needs teacher.

She had worked a lot with Autistic children over the years

 We were having a great time at the party and we had brought along our  Macbook 

 R was on the Playhouse Disney Site looking at an " Ooh and Aaah" game

 I and the hostess were standing around the kitchen island .

 The retired teacher looked at what R was  doing and said" he is liking the screen because of all the shaking and the moving images.. Autistic children love things that move"

 I looked at her - taken aback

 She had just relegated what R is doing to a state of mindlessness

 ( and he is ever mindful )

 I looked at what R was doing and replied

 "not at all .. he is playing a game - if you click on the instruments you can make the monkey characters play that instrument .. and you can keep adding different instruments till it turns into an orchestra .. he loves music.. you see "

 She looks again at what R is doing and then nods her head- seeing him in a new light 

 It was  an important developmental leap for me to  trust our own eyes the most

 A friend of mine - Deb - gave me some great advice a little while ago

 I was expressing anxiety about going to India

 This was 2009- 2 years ago -  and the  first time we were going to see our family  after Autism.

 I was worried about  having to explain Autism to everybody

 But this friend said that the important thing is to look at your child through your own eyes and not as others see him

 I have been chewing over this profound thought

 And that Thanksgiving I got to put it into practice.

This shift in perspective simply dissipated my anxiety 

 This perspective is very different than learning how to cope with people's reactions to our kiddos not looking like other kiddos

 I knew that always

 Followed the principle of - if R was not bothering anyone or hurting himself - he was fine to do what he wanted 

 Even if that thing was to coo at all  aisle numbers, sit down in the birthday aisle, gasping with wonder at all the birthday cards around him that said  you are 1 .. you are 4 and so on and so  forth

 This perspective is about not letting just anybody else's impression of your child influence your opinion of your child

Its about using your own eyes to look at your child and look at your life 

 Its about being selective about the perspectives and the advice we special needs parents get

It is NOT about  about steeling oneself ... learning not to mind .. training oneself to not always be in the mode of correcting your child ( for things that are not even wrong )

 This is about not minding at all

I am Floortime Lite Mama  and I blog about my  life and my amazing autistic son here . This is one of my old favorite posts as the perspective I talked about here has had a big impact on my life.


  1. Who doesn't like looking at things that shake and move?
    I'm glad the insensitive teacher is retired; her patronising comment showed a failure to understand that children with autism are children first of all and not some kind of subhuman beings. You showed remarkable restraint in your response.

  2. This is so true. When one doesn't live with someone and see their everyday interactions with other ppl and things, they can't see the very subtle ways in which they interact. It's easy to miss the complexity of those interactions and the completely logical reason for them.
    We met with a speech language pathologist weekly and worked on letters. Sometimes O can be quite animated with her responses and it's difficult to follow her path. During our 'j' work, she starting talking about a ski jump which didn't seem to the SLP to have anything to do with 'j'. She was pleasantly surprised to hear me explain that the 'j' is in fact in the shape of a ski jump and she was explaining the shape of 'j', not the sound. O sees letters all around her in the shapes of everyday items. We've even passed time at the ped office by making ourselves into letter shapes. We never bore the ped!!! It made me feel wonderful to know the SLP realized we saw the subtle ways in which O learns, things she wouldn't have seen unless we pointed them out.
    dh and I have often talked about the mysteries of O's mind. We take comfort in knowing there's so much going on up there, it's a long path for her to get the information out to show us.
    I'll have to go and reread what you wrote about your travels to India. I seem to remember you describing the ease of being there.

  3. Gef the mongoose - you know I thought about that as well
    Jos - I love the way you look at the beauty of o's mind

  4. Love this. You have expressed so beautifully what I've been thinking.

  5. the comment of the special needs teacher was very similar to what a teacher in a rural school here in India would say about a student from a tribal community....something as inane as 'they cant learn' when the response of the student is not from 'the' text book but from her own environment, articulated in her own is sheer unwillingness to engage with what is happening right in front of one's eyes....wonder what can one do to get the teachers to 'see' this....

  6. I'm keeping you in my head as I go through my day...
    I'll take counsel from others, but I will make sure we... trust our own eyes the most.
    All of our eyes.
    Thanks again.

  7. Thanks so much Laura and darling Val
    Nikhil - you made such a great point !

  8. If only everyone understood. My niece is autistic. My son is diagnosed with cerebral palsy. It's not just the looking different. Sometimes the sounds that they make draw attention and people just don't understand.