Thursday, April 16, 2009


Last week a neighbor came in and pressed this pamphlet from Curves in my hand.

She talked about how much she loved going and how I should really go

She is not really hinting at my corpulence- as she has also bought along a plate of chocolate chip cookies

She is worried about me – "I am thinking of your whole life K .. all you do is work .. you need to do something for yourself.. you are either in the office or doing things for R .. where are you in all this "

I hear her and appreciate the kind thought

But I do not know how to explain that the LAST thing I need is one more thing to do (even if its for myself)

One more thing that takes me away from playing with R would be more than I can bear

Here is the unique burden of mothers of ASD kids –

The wide spectrum of ASD and all the stories of the "recovered " children- all these parents that basically devoted their entire life to therapies - tells you that with all the right therapies and enough hard work your child may recover

The corollary of that is, if your child does NOT recover – you did not work hard enough

This is the sad secret that many of us mums carry in our hearts!

We did not do enough, we failed our children

Its one of the reasons that I feel almost a constant sense of guilt ( in fact from some of my virtual friends I learned that not just the WOHM - but even those moms that homeschool their kids and are Stay at home moms- basically doing the ideal – feel guilty)

All the daily chores of life – the laundry the dishes working – and worse work trips – all the things that keep me from playing ( read that as building new neural connections )

People say grief has many cycles –I feel that way about guilt.

Someday it's my primary feeling on parenting , some other days I am mellow about it

It ebbs and flows insidiously eating away at joy

Today at the end of a corporate retreat that I was so dreading( as it meant two more evenings that I am away from home and R is probably playing on the computer ) and yet I can see has been good for me another thought has been blinking on the radar

What if I gave up on perfection?

But focused simply on the most I can do – when I can do it.

The stories of all the warrior mothers who inspire us and fill us with guilt are told and retold

But what of all the stories of those parents who worked just as hard – without recovered kids- ( I know many of these mothers and admire them so much )

What if it isn't a magic formula of "tons of therapy"=normal child

What if transformation isn't even the point?

For deep in my heart I know R is a gift – inspite or maybe because of Autism

A fellow blogging mom said that she let go of fear today

Today I am starting my journey of letting go of guilt



Becki said...

This was absolutely beautiful.. I feel guilt every day. I feel constantly that I don't do enough. I don't do the diet, I got him vaccinations, I am not at every therapy known to man because I can't afford it... guilt.. so much guilt. I have to pay attention to my daughter too, I have to take care of the house, I have to spend time with my Husband.. my other family members need me too... there are errands to run, chores to do.. it never ends. I do my best. I stay home because I can. I plan to homeschool.. yet, the guilt is always there. Thank you for voicing this. Thank you for daring to journey out of it.. I have been trying for a long time.

Corollary - I looked it up! I love your blog!

Maddy said...

I think guilt is part of being female and definitely part of being a mother. I completely relate to the 'can't do enough.' I think before the children went to school [not baby sitters or respite] I was quite close to burn out but once they did start to go to school even for a couple of hours that made a tremendous difference to my battery recharge system. Then you feel guilty for having no responsibilities for two hours......
Best wishes

All About the Bailey's said...

Thanks for sharing. I too feel very much the same as you. From what I read you are a very strong, smart lady who loves her child beyond words. I think we all need time to ourselves. What a great neighbor to come to you and for her to tell you that she sees all your hard work at home and away from home, she seems very caring....a lot of people think it's a piece of cake until they actully see parts of our lives.

Territory Mom said...

This is what I love about blogging. We are all different but so much alike. K, you are doing a great job. Your little guy has the best mommy ever. Like Maddy said guilt is part of being a woman and a mother. There are times when I put it in God's hands and other times when I make it about me. The first is the best. Remember faith is like living in reverse. Keep your eye on the future. What you are doing today will grant a wonderful future for your son.

Christine said...

I don't know if I can ever completely let go of the guilt. But I have learned that it is quite harmful. Because then when I DO focus on what I think I should be doing with my boy (building those neural connections!) it becomes all about the autism and not so much about a mom and a boy. Our time together becomes a means to an end.

Niksmom said...

I have to echo so much of what others have said. The guilt is absolutely universal —regardless of special needs or not. (My 77 yr old mother still feels guilty b/c she doesn't know how to help me find/make more time to take care of myself!)

But, yes, if we are able to stop striving for the elusive journey's end and find ways to enjoy the journey more, to make the playing simply about playing and loving our children, teaching them what it feels like to be accepted is a gift.

And, something I am slowly (oh so very, very slowly!) learning is that my son needs "down" time, too. Time away from constant learning and constant pressure. Sometimes he *needs* to stim or zone out listening to his music or whatever it might be. It's one of his coping mechanisms and I need to respect that as much as I expect others to do so.

Taking care of ourselves —in body, mind and spirit— is so easy to put on the back burner but so important in the examples we show our children and our families.

As soon as I figure out how to do it I'll be happy to share the knowledge! LOL Big hugs!

Julie said...

Oh, big hugs from me! I want to let go of the guilt, too...and I have nothing to add that any of the previous commenters haven't already said! =) Thank you for being so honest and sharing your thoughts.

Anonymous said...

K- I love your blog !!
And- yes, I am constantly consumed by guilt. I wish I could make it more about the process and less about the result- but I can't :(.

Floortime Lite Mama said...

Thank you for the lovely thoughtful comments my virtual friends
As you can see from today's post I am sliding back into the mire of guilt
Still its better because I am aware

Anonymous said...
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Anonymous said...

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