In my club of mums and dads of Auties, we speak mostly in terms of addressing deficits.
We say they are 18 month level on receptive language , at a 12 month level for expressive language, 24 months for Gross motor and 33 months for fine motor.
As they grow up, we think about their social skills level and executive functioning level
And all the while we are thinking of the difference between those levels and the level they are supposed to be
We think of the all the things ( and, gosh, they are so many things ) we need to do address these differences
And we are filled with despair
I believe that there is a better mental model
The mental model goes like this
We think of our child as perfect.
We think of the world as difficult
We think of the therapy etc as what the perfect child needs in order to thrive in the difficult world
We stop thinking in terms of addressing deficits
So in effect, we think of their special needs in terms of the special needs of other precious things, for example, a cashmere scarf
Yes, it would completely wither away with “mainstream” detergent.
Yes, it snags easily and so yes, we must be careful while out and about with it
But that is because the child – like the precious scarf - is delicate and different
A shift in the way we think, has a profound impact on everything
I quote Shakespeare in Hamlet "Nothing is good or bad.. its our thinking that makes it so"
Thinking of your child as whole, as beautiful is deeply healing for the family and for the child
No no no - don’t quote me “Life in Beirut” or tell me one could never think like this
I am telling you, that one can think this way
One can be fully aware of all the diagnosis one’s child has.
And still think that that child is the biggest, most amazing gift they could ever have dreamed of
How do I know this way of thinking is possible ?
I know its possible
Because its what I do.
“We are perishing for a lack of wonder .. not for a lack of wonders “
K is the mother of a charming 5 year old and blogs at Floortime Lite Mama
Beautiful as always. I struggle with viewing things this way, but I love reading your writing, it makes me pause and gives me something to think about and strive for.ReplyDelete
Totally agree that a change in perception, in a way, changes reality. Once my wife and I accepted my son for who he was, our life with him became much happier. Great post K.ReplyDelete
THANK YOU for this post. I've been struggling a lot with acceptance lately, and really need to hear these things.ReplyDelete
This is a good suggestion but difficult to implement. Not because we are unable to change our thinking but because the world is constantly measuring our children with things like "milestones" and "receptive language."ReplyDelete
It's similar to the "world" defining what beauty is. You know. The whole thin is beautiful thing. Not saying that this is truth. It's obviously about perception.
Just my two cents :-)
thank you. your posts always make me look at life with our son in a different light.ReplyDelete
You say in words what I know in my heart. Thank you.ReplyDelete
you alwqays make me feel this way... that I am blessed and I am filled with joy at the bundles so called..Love to read your post it is greatReplyDelete
I love your writing. You have a beautiful view of life. I feel that you and Big Daddy have a similar POV, only he comes at it with humor and you come at it with lyricism and grace. I wish all parents of newly diagnosed children could read your essays. It would make things much easier for them, I think.ReplyDelete
More beauty from your magnificent heart, my friend. xoReplyDelete
Thanks for the reminder that we all need, perception IS reality. Absolutely.ReplyDelete
I could not agree with you more.ReplyDelete
It's a brave stance, but one that's more valuable than almost anything, IMO.
Thank you for your courage.
This is so difficult for me at times. That's why I need you to keep reminding me!ReplyDelete
Excellent point. Getting away from deficit thinking does make a big differences. You still working on building skills and helping your child cope with a world that is just as "not ready" for them as they are "not ready" for it. But you think about your child, not what's "wrong" with your child.ReplyDelete
My three boys on the autism spectrum are now 11, 10, and 8. It's been so long since I've immersed myself in deficit thinking that I have no idea where they are compared to where they are "supposed" to be. I don't think about "supposed to" at all. I think about who they are, and do my best to help them become who they are capable of being--just as I do for my neurotypical step-son.
We like to say that "we are all on a spectrum." Everything from happiness to normalcy can be considered a spectrum, and when we started looking at the world that way, Billy's autism began to take shape as just another way of being in the world. That's not to say we don't struggle with the things that challenge him -- god, no. But we struggle with our own challenges too, day to day, and facing up to those challenges as a family is what our life on the spectrum is all about.ReplyDelete
That is the way I choose to look at the world. Differences are all around us and in each of us; the more comfortable we become with our own differences, the more readily able we are to see and accept others' differences.ReplyDelete
K, I really love this and needed it! The cashmere scarf metaphor is perfect! xoReplyDelete
I have been struggling with so many things lately. My way of thinking has been a huge issue and I finally let go of it all last night and realized that I was making things worse for myself by focusing on the deficits. I wish I had gotten to read this weeks ago since this is just a more beautiful way of saying everything I'm trying to wrap my mind around. Thank you so much for always reminding me to see the positive, to see with joy. Why is this so hard for me lately? It wasn't always like this. : / Thank you, thank you...
K - you are beautiful as always.ReplyDelete
And I belive your words to be true for EVERY child as well. What gifts we've been given - and what I wouldn't give to hug yours someday!
I love this post.ReplyDelete
I wish special needs parents (myself included) had the resources to treat themselves as precious as well. It is easier to see your child for all the wonderful things they are if you are also being cared for.
Beautiful post (as always!). "We think of the therapy etc as what the perfect child needs in order to thrive in the difficult world" - absolutely agree with this :).ReplyDelete
We've taken the same approach and I'm finding it is especially important to keep this perspective as our boys get older. My 9-yr-olds are becoming more aware of their own challenges now and as we've tried to explain autism we've put a lot of emphasis on helping them understand that there is nothing *wrong* with them, that everyone has challenges in one way or another and it's nothing to be embarrassed or worried about. In terms of the things they are working on we (and their teachers) frame it in terms of "goals" to work toward, not "deficits" to work on. That mindset makes a huge difference in their self-esteem and their ability to make the most of what they're especially good at while working on the things they need to work on.
تقدم لكم من خلال افضل المواد والادوات المستخدمة