Tuesday, June 2, 2009

Indispensable

My mum says she gets ill a lot now that my sister and I have left the house.

When we lived at home we were so much work -that she never had the time to get sick.

My friend at work, who was looking forward all last week to her DH and kids going off on vacation, so she would have more time to herself has come in to work with red red eyes
"I could not sleep a wink. I am missing them so much K. The house is so quiet. I never knew how silent it could get" she tells me

This feeling of being needed - both burdensome and addictive all at once seems such a core part of being a mum.

Of course being the mom of a special needs child adds an extra turn to the dial of each feeling.
( Doesn't it seem that way with everything in Autism land -
Each emotion is the same - but what is different is this - everything is dialed up several notches)

I am thinking of this as I am breaking up chips into small pieces for R for his pre-therapy snack

He wont eat them if they are not in small bits.

In the same way he wont eat any vegetables unless they are pureed.

In the way he cannot sleep unless some part of me or DH is touching him all the time

I am making his drink - water with ice and just a splash of Sprite - because without that little carbonation he will not drink anything at all
( the rules of -if they are hungry enough or thirsty enough they will eat and drink just don't apply to our autie kids)

I am making a mental note to give him that 10 minute warning before his therapy starts so he knows its coming.


Parents of typical children may wonder how we love our children so much -
They may appear unlovely to normal eyes

But us mums and dads know, that if anything, perhaps we feel even more for our special needs kiddos than we feel for our normal children

For to these children we are the indispensable life line

That crucial part- without which the entire machinery of therapies and school will come to a halt

The reason for every skill learned and the reason for a necessary skill not being present( no wonder we carry so much guilt around)

The real twist that can add an edge in our love is that in helping our children with special needs lead happy lives - only we know ( and care ) exactly what they need

I ponder upon how indispensable us mums and dads of special needs children are

I hope we live long
I hope we all live healthy

5 comments:

Julie said...

Yes. Oh, yes. My biggest fear is that something would happen to me and Daniel would left alone. It's scary that his happiness and well being depends so much on me being alive and healthy and able to help him daily. That sounds terribly self-centered and awful when said out loud like that, but it's true. Oh, I get every word of this.

K said...

I know what you mean - I really hesitated before posting this becasue it sounds too self-important. Its true though

Lyndsey said...

DH and I are still fiddling around with making a living will because we can't decide who we would want the girls to go to if anything happened to us. Who would understand that the rules don't apply to our kids? And what if I died and DH had to hire a nanny of sorts? I just can't wrap my mind around a possibility like that. I don't know what the girls would do without me. I know it sounds self important, too, but it is still true and it plagues me.

Huriya said...

OMG this so true.. This is the biggest fear I have for my son and in my mind I keep thinking of possible care takers but then how would they understand or have enough patience as we do.
So one day I said to my DH that maybe we should have a big family so the siblings can support each other.. which is also absurd. Because there is no guarantee they would be able to in the first place or if they even want to. Assuming that the rest of them ARE neuro-typical it is so unfair to expect such a responsibility from them or even bring them to this world for this reason.
Sorry to digress.. but I really hope that your last line is true for all the parents especially for us.

Anonymous said...

there is a lot to do and in India there is the stuggle to combat the odds with in laws and after there there is a fatigue that really kills the efforts to have flor time wioth the kids. I try though and your blog makes me feel really guilty. I am sure once my kids leave me even I will be helpless and ill love
shovona

Floortime Lite Mama

On my life as the mother of an adorable 5 year old with Autism and Apraxia