Tuesday, May 02, 2006

A short diversion off the path

In the middle of my week long theme of organization on this blog - I thought I would take a minute and let you know that Ali Edwards has made my day by posting links to some of my autism pages on her blog. You can read her blog entry here and see a cute picture of her little boy and another fun one of her dancing and having a great time! She is such a creative inspiration and you can just tell that she is genuinely a nice person as well.

Thanks Ali!


I have already received several nice comments from people who personally emailed me to tell me that they were grateful and happy to read the information I have shared. Thank you so much for your kind words, they mean a lot to me.

There's also an anonymous comment here on my blog letting me know that my "What Not to Say" article was offensive. I can understand the points made by this person and I don't pretend that writing an article like that will make everyone happy.

The good responses far outweigh the few bad responses (I'm sure there will be more) and I'm ok with getting both. I am surprised though at how many times in the last year someone has lashed out at me for something like this. Usually it is a parent of someone with autism and I guess in a way I can understand that because there is a whole world of hurt there that has to be worked through.

Anyway, scrapbooking is a much safer topic in general so I usually try and stick to that. But I won't pretend that my life doesn't have autism in it and I would never expect anyone else to do the same.

Of course I love to visit Ali's blog for the same reason that hundreds (or more likely thousands) of other scrappers do... she's talented, nice, and very cool! But I also love that she shares little bits of her world with others, especially the really dear stuff like her son's struggles with autism.

I sincerely hope no one ever sends her anonymous posts criticizing her for her for how she is trying to help others deal with one of the greatest trials they will ever face in life. I'm not being dramatic or even trying to be rude to other well-meaning people by saying this, but unless you've been there, you just don't understand. Just as I could never understand the pain of having a child who has cancer.

Autism is so confusing to understand and quite often it appears to others that the child just has a behavioral problem and they feel like they should say something to make the parent do a better job. No one (as far as I know) would walk up to a stranger in a grocery store and criticize their child for being in a wheelchair, or think that it was the parent's fault. But you wouldn't believe the stuff that gets said to a parent of a child with autism when they actually do dare go out in public.

This is especially true when the child is very young. Anyone who has ever had a 3 year old child with or without a disability, will tell you that it is no picnic to take them out to a store or restaurant. But add autism in the mix and it can be something beyond description. It's not just strangers either. Relatives spend their time blaming other sides of the family for "bad genes" or all sorts of things like that. It is just a difficult situation. It does usually get better with time, but at first it is all quite painful.

Please know that the true intent behind the article I wrote, is simply to increase better understanding of what a family with autism goes through, especially as they struggle with a recent diagnosis. My advice is simply to be a friend and do more listening than talking. It shouldn't always be that way, but a parent will need some extra support at first. No Ph.D needed, just only some patience. And of course we all make mistakes, no way around that. I don't have all the answers, these are just my suggestions.

I appreciate all input and I thank you sincerely for reading my blog and visiting my website.

Back to my regularly scheduled programming tomorrow!

Katie the Scrapbook Lady


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