Monday, November 24, 2008

You can't SEE Autism!

I wish I could make a sign to carry around with us wherever we go out and hang it around Ivy's neck or something. I get so discouraged sometimes because people just think because she is cute, there is nothing *wrong* with her. She walks around upright and appears to be able to communicate, so she must be *ok*. Well, very often, autism can't be seen. Let me repeat that, you can't see autism, ok?

Conversation with a friend (and fellow musician to my husband) this weekend:

I tell him we are organizing a fundraiser this January and we'd like for him to play in it if he could donate his time. I then proceed to tell him about our idea to have several bands and provide entertainment for a cover charge. He looks at me and says, who is the fundraiser for? And I say Ivy...for her treatments, to help ease the burden on us. He looks at her and then says, "well she seems like she is fine to me. What's wrong with her anyway?" I have told this friend before that she has autism and I know my husband has too. I am just in awe because you can't see her physical disability, that people assume she is normal. That really irritates me. It just goes to show you how uninformed the general public is about autism.

It hurts me deeply that this guy thinks there is nothing wrong with my child. Then I felt the need to explain how she is only as good as she is because we have both cashed in our 401k's, took out a second mortgage and spent well over $150,000 in treatments, medication, supplies and special food to accommodate her special diet. We drive old beat up cars and live in a dump because we spend every extra penny we have getting her better. Why should I have to explain that to people to justify our reasons for having the fundraiser? So now it makes me feel all self conscious that maybe others will perceive Ivy in the same light and maybe people will not want to come to our fundraiser or feel like donating is stupid.

I could really let this tie me up in knots, but I am looking forward to Thanksgiving too much to let it ruin my Holiday. Take it way God, I can't handle this right now.


christinaylor said...

Lisa, I have been having the exact same thought lately. Some people in my own family don't believe that Connor is sick. I wish those people knew how much we could use their understanding and support.

I'm glad that our kids have us to believe in them and stick with them in this journey for healing.