Thursday, August 5, 2010

The truth about my life

Almost everyone I know has been wonderful with the news of R’s Autism

In fact, I often say we meet a nicer type of people in the special needs worlds and encounter  a nicer side of people in the typical world

But on a rare occasion,  I get to experience a brand of sympathy that I find especially hurtful

The kind that assumes my life is all doom and gloom

I know you are just putting on a brave face.. I dont know how you do it”  a friend told me when I told them I was okay in the early days of finding out , “I know you can’t really  be okay .. its okay to mourn… you can tell me like it really is ”

Its as though the new rules, for my life as the mother of a special needs child, are to develop a gritty forbearance.

A sort of shouldering-my-burden with a  make-lemonade-when-life-hands-you-lemons strength

As though I don’t have the permission to be happy and proud any more

But it’s not like that

Its not gloom and doom  at all

For R is a child of endless charm.

A dream come true, as I tell him everyday

And I am a very lucky mother

(Its a lot of work but  work does not preclude joy)

In the sisterhood of special needs mamas that tell our stories in our blogs, we have been talking about authenticity lately

A need to tell the whole story

Not just the good bits

Also the bad bits

Its as though we are saying – here is all the detritus, all the rotten stuff- now that you know this whole complete story of me – do you still love me?

This has made me reflect on the way I tell my story

Do I pick only the shiny, pretty  bits and pieces of my story?

Do I gloss over the hard bits?

I don’t think so

 I really do experience my life in the way I talk about it

But the truth is that there are many true stories about the same thing

All truths are only versions

For everybody says it like it is

Like it is to them

So I speak my truth, the complete truth and nothing but the truth

When I tell you that life is good  

And I am okay


K writes about her life as the mother of a charming 5 year old at her blog Floortime Lite Mama


  1. This was beautiful! Thank you. I can't believe this is your first guest post! I love reading your posts.
    Thanks for the reminder that it's not all gloom and doom. Yes, some days are tough, no doubt, and the learning curve is never ending. But don't pity us. My least favorite line that has been said to me is "wow - you really have your hands full!". I'm glad you're ok and I'm glad you write your blog.

  2. It is definitely interesting how others perceive our lives. The worst comment I have ever received is "I just don't know how you do it". Do what? Love and raise my children? Who wouldn't? These kids of mine are awesome and inspiring.
    The whole story is important and I think sharing the hard times too is crucial. The hard times reach out to others going through the same and show them they are not alone.

  3. My son has autism ....Autism does not have my son!!!!!!

  4. Yep!! "I don't know how you do it." is one of my least favorite lines. I understand the well-meaning intention behind it, but really....did I have a choice in the matter? Wouldn't we all do this for our children?
    Oy. Now that we're adopting another child with special needs, people now just think we're nuts! What I find most is not wanting pity. Drives me nuts.

  5. Another beautiful post K. Similar to "I don't know how you do it" is the dreaded "I could NEVER do it." Yes you would and you will when you inevitably face your own hardships with your children. I went through my phases of grief in the beginning, but that's long behind me. My daughter is pure JOY and it's my profound privledge to be her mother.

  6. You are right that raising a special needs kid isn't all doom and gloom and it isn't all joy and happiness. We all have good days and bad days. Great post. Stay positive.

  7. I've been told that I'm still in denial. What am I denying?!

  8. How true that there are many different ways to tell the same story. It can change from day to day and even hour to hour. You have such a beautiful way of getting to the heart of the matter - thank you for sharing this here.

  9. You always leave me with a lump in my throat, I love this K.
    Well spoken.

  10. Love the way you put it, K, totally agree :).

  11. "For R is a child of endless charm.
    A dream come true, as I tell him everyday
    And I am a very lucky mother"
    The love you have for R and the fact that you are peacefully content with your life and with HIM always shines through in your writing. I feel your truth.