Friday, April 24, 2009

Autism Awareness #7 - Parents - We are enough

My cousin, Jennie forwarded me the most beautiful quote. I wanted to share it with all of the other parents out there who may be struggling, particularly my fellow Autism Mommies...

Sol Lewitt to Eva Hesse:

Just stop thinking, worrying, looking over your shoulder, wondering, doubting, fearing, hurting, hoping for some easy way out, struggling, gasping, confusing, itching, scratching, mumbling, bumbling, grumbling, humbling, stumbling, rumbling, rambling, gambling, tumbling, scumbling, scrambling, hitching, hatchiiing, bitching, moaning, groaning, honing, boning...searching, perching, besmirching, grinding grinding grinding away at yourself. stop it and just and tickle something inside you, your "weird humor." you belong in the most secret part of you. don't worry about cool, make your own uncool...if you fear, make it work for you -- draw and paint your fear and anxiety. and stop worrying about big, deep things such as "to decide on a purpose and way of life..." you must practice being stupid, dumb, unthinking, empty. then you will be able to DO! i have much confidence in you and even though you are tormenting yourself, the work you do is very good. try and do some BAD work. the worst you can think of and see what happens but mainly relax and let everything go to hell.
This ties in nicely to the conversation I had with my social worker last night. I am so, so, so very blessed to have L as our family's advocate. She is such a beautiful and compassionate soul who goes above and beyond everyday in her work. When we were discussing something to do with our therapy contracts, I was beating myself up for not doing something I should have, but forgot to. She stopped me mid-sentence and gave me a proper tongue lashing. I'm paraphrasing, but she said:
"Do you think that those Oil execs in Calgary, driving around in their expensive suits in their Lexus or Hummers, with their screaming, bratty, spoiled kids in the back seats, will ever experience the universe's moments of beauty? While they are patting themselves on the backs, thinking of themselves as heroes for pulling off multi-million deals for stripping the Earth, do you think they have ever taken the time to see the beauty in their children's simple accomplishments? Our society looks at celebrities with hero worship, when they've all got their trainers, their personal chefs, their nannies and their personal assistants, do you think they have the time to feel the fierce pride in their children from across the room as their nannies hold them? Parents with children with special needs are the heroes in life. Not just for what you do for your children, which I (she) thinks is above and beyond what other parents would do, but because parenting these kids has given you opportunity to experience life's joys in ways the others will never get to. You will be judged as having been the best you could be for your children, so please stop thinking otherwise."
All parents are experts in beating themselves up. It's so easy to preach and say that we shouldn't be so hard on ourselves, but I think it's instinctive to feel that way because we want so MUCH for our kids. I think that it's particularly difficult for parents with kids with autism. There is so much contradictory information out there right now on what we can or should be doing for our kids. We are in a limbo state right now. Because we still don't know the cause of autism, we don't know what we should do about it. There are a million different kinds of interventions that range from behavioural, to bio-medical, to sensory, etc. Just coping with the day to day of parenting our children can take 150% so how can we be expected to do research on top of that AND attempt new strategies AND advocate AND try to give back to the community and raise autism awareness? It's becoming even more difficult now that autism is so often in the news. When you hear the Jenny McCarthy's who would accept no less than 1000% effort by following her own experienced strategies, it makes the others who may not be taking the same route, feel that they are not doing enough.

I say that the only failure one parent can legitimately feel is if they choose to do nothing at all to support their child, because of their own selfishness or laziness. I won't judge and define what would qualify a parent as being selfish, or lazy, because I'm sure that deep-down, those parents know who they are. But as long as we are all looking out for our child's best interest, to the best of our abilities, we are enough.

Back to Jennie, she also forwarded me an email last week from a friend of hers to whom she had referred my blog:

Hey Jennie,

Realized I hadn't replied to you after sharing your cousin's blog.
Thanks so much. I can honestly say that this is the first blog I've
read in a long long time that made me want to keep reading. I really
like her attitude and can see that she's doing A LOT of good. She
puts me to shame really. I've had friends tell me over and over
again that I should be doing just this - creating awareness, telling
our story so other's have a better understanding of what it all
really means. Even rallying the troops to take action against our
governments complete disinterest in these children. I just never
felt I had the time. Between caring for Garrett, getting him to his
daily therapy sessions and working obscene hours to pay for it all, I
thought that was enough of an excuse. But here, your cousin has
three children - two of them twins on the spectrum! I have no
excuse. Fortunately I can continue to duck the extra work and just
point people to her site from now on!

I typically tend to steer clear of books or blogs written by other
parents. Sometimes it's depressing (we're taking this a day at a
time and don't want to speculate too much on Garrett's future). In
other cases - Jenny McCarthy for example - it's extremely off
putting. In her case she makes gross exaggerations and clearly
doesn't understand autism the ways she claims to. Don't get me wrong,
I think the only way I got through the first week after our diagnosis
was by reading "Let me hear your voice," a book written by a mother
of two autistic children that chronicles her journey through self-
education, trial treatments and eventually "recovery" for her
children. (I could write volumes on why I put the word recovery in
quotes but for now I'll leave it at that).

I did read much of your cousin's blog, however, and it's absolutely
perfect. She's a great writer/story teller. She's done a great job
at giving people a window into her whole experience. And clearly
she's helping - early signs etc. I recognize so much of our
experience in her account of the early days, the nagging suspicions,
the testing etc. It was all very similar for us. I'll definitely be
tuning it in future.


I am not posting this email for self-promotion. Rather, I felt a bit sick after reading it. I don't blog
to make anyone feel guilty that they are not doing as much as I am. The only difference between
me and other autism parents, might be that I blog. I'm bragging about all that I do so people know about it. I will never know all that the next mom does, unless she decided to blog about it. We don't go around showing off and spouting off our list of accomplishments and efforts (okay, so maybe some of us do!). What I'm trying to say is that I don't want to hear another parent feel badly about their own efforts. It's all relative.

You may not have the same support that I have at home from family or friends
You may have a child/or children whose needs far outweigh mine
You may have a job that takes you out of the home
You may have your own personal health or stress issues that I don't
You may have a social life that allows you to escape the world of autism every now and then

I don't know what separates us, but we all live with different circumstances. No two children with autism are alike and my twins are a testament to that. So why should parents feel that we all should be putting forth the same effort?

As L was trying to explain to me. We are enough because if you are even reading my blog and opening your mind to other's experiences and continuing in your efforts to learn more to help your children, then you are doing more than the average parent. We are enough for our kids.

Just as our children are enough for us. No matter their challenges.

Just please don't tell me you are
doing nothing. That is not enough.


Amber Dupree said...

Kudos to you!!
My favorite part is "No two children with autism are alike"

So true!


Casdok said...

I love the quote.

H.K. said...

I have some friends whose children have autism and I think this would be a great post for them to read.

They keep comparing themselves to other mothers with autism and beat themselves up for not doing a "better" job. You are so right that it is "all relative." Mother's in general should stop comparing their parenting skills to other mother's as well.

Anonymous said...

Thank you so much! I have triplets, 2 on the spectrum and the other with my youngest having adhd/add. There is not a day that I don't feel I'm not doing enough, or I'm doing the wrong things. Your blog made me feel, well, a little more in reality :)

Amy said...

What a wonderful post - i will be directing Lady Di over here to read it. The quote is perfect and I think would make her feel better. She posted today about her experience at the Doctors this week and the struggles she is feeling over at Daily Doses of Mama Drama. I know your blog and this post will help her through this difficult time. Thank you again for commenting so we could find you - your an Angel.

Lady Di said...

Thank you for this post. It has been a struggle, but I have come to the realization that I am doing everything I can to be a good mother to my children, especially my son. It seems silly now, but one of my biggest issues was getting upset with all the judgment that comes with the "look" that people give me when my son was having one of his "moments". I am learning to let that go. I read a very good book on parenting a child with Aspbergers, and in it the author referred to a great quote that put it all in perspective..."the ones that matter don't mind and the one's that mind don't matter". I love my son and I think now about the funny stories I have and will have about him that are so uniquely ours.

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