Saturday, May 16, 2009

beyond the window of opportunity

"He is 4 years and five months old"-

I find myself saying if anyone asks me how old R is

While parents of Neurotypical children will say their kids are 3 or 4 or 5
us Autie moms are more exact - much more exact

and will often say he is 3 years and 2 months old or she is 26months old

Its something odd that I have noticed about us moms of Auties

I think I know the reason

Its the monster myth of the window of opportunity

You see - us Autie moms are told that there is a window of opportunity.

As though our young kiddos brains are malformed lumps of playdough-

which with just the right kind and large doses of therapy we will turn into the normal brain

Which is why in the early months of diagnosis you will hear things like -
I researched madly
I stopped sleeping

I read every book

I tried the diet

I went on all the message boards

I am so confused .. if only I had a crystal ball and knew what the right thing to do

I am trying to see if I can quit my job

I am trying to see how to get 8 sessions within a day

Frantically we seek the right answer

In a race against time

Because though the right treatment is so critical , even while we are researching the playdoh is hardening
The irony used to strike me often as I used to trade off between reading "Let me hear your voice" and doing Floortime

In addition we are also protecting ourselves from the shock of the next year

We cannot bear going from one year to another in one day

We must brace ourselves each month - 3 years and 3 month and so on

Early Intervention is certainly critical

But a dangerous corollary of this window of opportunity theory is that it implies that once our child is 5 or older - progress will slow down tremendously

So when we are saying our child is 39 months old, we are also saying - only 21 months left

Once they are 6 we no longer worry about being exact

With relief and despair we can say - he is 6, he is 7 he is 8

Because the deadline is past

And our child still is not doing that thing they were supposed to have done by now

After 2 years in Autism land I can certainly say that the first year when R was supposed to have been the most playdoh-like he made minimal progress

If we had continued at that rate we would have been in poor shape

I also hear from my good friends with older kids how everything fell into place at 11 at 17 at 21

The window of opportunity while energizing at one end is terribly toxic on the other

I am doing my bit to combat this

When anyone asks how old R is

I shall simple say

R is 4


All About the Bailey's said...

So true, K!

Julie said...

=) Yes!

danette said...

I know that fear... but I can attest to the fact that progress doesn't necessarily slow down after age 5.

Lisa said...

Thanks for dropping by and your lovely comment. I am going to the beginning of your posts to catch up on your family.

Warmest regards,

Trish @ Another Piece of the Puzzle said...

This is beautiful, Kajoli. It starts out as a frantic dash toward some bit of magic, and then eventually you realize that your child will progress at their own pace.

I still believe in seeking out the right therapies and treatments that will help your child, but I have gotten to the point where it's not a panicked rush. Of course, maybe I am only able to say that because he is 7.

You might like my post called LIFE is the Puzzle.

melody is slurping life said...

Your posts always, always resonate with me. I honestly believe progress is always possible.

Huriya said...

This is such an uplifting post.My son was recently diagnosed with Autism. He is 3 yrs old and all I keep hearing is he has atleast 2 year to make progress.. and I keep thinking what would happen after that.

aninont said...

My son is 29 months and 11 days old . From now on, I am going to say, my son is 29 months old .. for the next 11 days.

You are so right. I am paranoid, scared crazy about every passing day, every month. I cried on his second birthday.. since he was no longer in the " he is so young, you caught this early" category.

There is so much pressure and the pressure comes from the media, the Dan doctors and also these success stories where, one day, you diagnose a child, the next month, you start aBA, then suddenly there is a language explosion, then by the next year, kids are doing sooo well...........all before a certain age?

We were told by my dan doctor last week" I love this age, you can do so much... plan is. MB12 daily for the next six weeks, then Hyperbaric for the next six weeks then plan on chelation... time is critical??""

I was mortified.
I bug my babysiter daily by asking what S did today and she told me one day" You know Normal kids, donot come up with something new every single day, progress comes in spurts and then it plataeus."
I think this craze to beat time, comes from the nasty literture and other parent experiences. My husband who refuses to read other people's experriences, never gets bothered by these things... according to him DS is cruising along his own curve and will catch up at some time, maybe late"

May be I need to beleve this.

Territory Mom said...

You really hit home with this one. I trying to keep the faith that 7 yrs is our turning point, but we have reached many. For a long time I felt like I was raising twins. My son is 2 yrs older than his sister and he really didn't start "talking" until she did. Unfortunately she took on the role of caregiver very early and right now she is only 4 yrs old. I could go on and on. Sorry. I love your posts.

Anonymous said...

yes! i'm with you. and fluffy is 8. and learning and growing every day.

Anonymous said...

Congratulations for breaking out of one of those diagnostic-developmental tailspins.


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