It's easy to feel guility. I think it's expected.
A few weeks ago I met a father named "Jimmy" and his son "Junior" after a therapy session. We were getting ready to leave and they were walking in. Jimmy held Junior's hand tightly, helped Junior remove his shoes and socks. Junior flapped his hands just like The Boy. I started talking to Jimmy about school placement, therapies and my frustrations with the Board of Education.
"We caught it early - 18 months. And he's come a long way but Junior don't talk. I have an older son - he's normal you know. It be nice if they could play like brothers," Jimmy told me.
My husband walked in and The Boy immediately smiled and said "Hey Dad!" The Boy was especially talkative that afternoon. I looked over at Jimmy and I remember wishing The Boy would be quiet. Our children were the same age. Mine could speak. His could not. I felt ashamed comparing our situations.
Because in some way - we had it easier. The Boy can't carry on a spontaneous back and forth conversation. I can't ask him what he had for lunch and have him tell me. I can't ask him who he played with today. But The Boy could tell me if he were hungry, if he had to go to the bathroom - if he wanted a particular book or toy. Who the hell was I to think that I could relate to Jimmy?
That same week, I read a post by Hartley Steiner "Comparison is Dangerous." If you haven't read it - you should. No - You MUST. Steiner writes:
Comparison is a dangerous thing. Yes, keeping life in perspective is a good thing, or at least it should be, but comparing your life to another’s is bad.
Our lives don’t compare to others – those that appear to have things ‘easier’ than we do and those that appear to have things ‘worse’ than we do.
Pain is pain. Struggle is struggle. It doesn't have to be a certain amount to qualify as 'enough'.
Steiner's post put things in perspective and validated everything I have been feeling. Autism is an invisible disability, easy to dismiss. As a spectrum disorder there are many variations: low functioning, high functioning; verbal, non-verbal; aspergers, autism, PDD. But I hate labels. Don't you?
Autism is Autism.
And we're still on the same side of the fence.
I used to constantly ride the self-doubt roller coaster. "How can I feel sorry for myself dealing with HFA when my best friend's nephew can't walk or talk or feed himself?" It was my friend who said to me one day, "Your burden might not be the same as someone else's burden, but it is still your burden." Now...I don't like to refer to our situation as a burden, but the setiment stuck with me. Yes, there are those who have it worse than we do, but some days we've got it pretty bad AND we have the right to feel badly about it. If anything, I think we are more keenly sensitive to how those who have it worse than us are feeling and maybe that makes us offer a helping hand or even just a friendly smile. But make no mistake, wherever your child sits on the spectrum, it is NEVER "just autism."
This is such a fantastic post and you are so rightReplyDelete
Loved Hartley's post
I realised at one point that comparing myself to those who were better off than me and ask :"why me " is not right - unless I also compare myself with those who are less fortunate than me and also ask "why me "?
I wrote a long post on this on Hopeful parents once http://www.hopefulparents.org/blog/2011/1/4/loving-this-life.html
Sorry I did not mean to write an essay in your comment section :-) but your post really resonated with me
Thank you both for your thoughtful comments! It always means a lot when people take time to share their thoughts with me.ReplyDelete
Please - no apologies for sharing! Looking forward to reading :)
AWESOME Lisa! I love your blog! *HUGS* :) HeatherReplyDelete