Sunday, April 20, 2008

Autism Awareness Month


Thanks to my friend Susan I found out about this. I just finished reading her blog entry and I thought about my own sister. Her name is Susie and she is autistic.

I don't remember a lot about Susie while growing up. One reason was because I have a twin and we were always together and really didn't pay much attention to others, but another reason why I don't remember Susie much was because she has lived in a special home since I was 6 years old. It wasn't an easy decision for my parents but her behavior was unpredictable and when she pushed my sister down the stairs they felt like they had to protect others in the family. She was 10 years old and my brother 13 years old. Our family lived in California at that time and there were, and still are, homes for the handicap. We were lucky we found a home for her that was a perfect fit for her. Her care takers, Shirley and Al did so well with her and she loved them. She was able to live with them for many many years. I think that she is now in her third home in her 50 years. If you think back to the year 1966, that was a long time ago with no resources like there are now. Back then they put kids and adults in sane asylums. Isn't that awful? Times have changed and improved and there are so many programs out there for parents with autistic children. My parents feel that we were very lucky that Susie has been taken care of so well. She is happy and relatively healthy.

When she was very little she would go over to the end of the curtain and ping with her finger the curtain cord so my father built her a contraption for her to play with but she was only interested in the curtain cord. She taught herself to read by age 5. She loved reading the TV Guide. She has a super memory too. She has had a crush on Arnold Schwarzenegger for years. We don't know why she is so focused on him, but if you ask her about Arnold she will tell whatever you want to know. She calls her brother her boyfriend which is so cute. She knows who we all are and even the spouses. When my mother passed away my father and I drove up to Santa Rosa to tell Susie. Susie acted like she already knew, she wasn't upset and she said she had even talked on the phone to her mom. We were pretty surprised how well she took the news but then that is Susie for you, you just never know what she will say or do. The Saturday before my mother died I had a long and wonderful conversation with her. At the time she was in the hospital waiting for a stent procedure. She was on oxygen and feeling good. It didn't make sense to us that she would even call Susie on that day. She wouldn't have called Susie to tell her she was in the hospital because that would have bothered Susie and didn't seem necessary . Maybe my mother did call Susie, but we have all talked this out with time frames and happenings and it just didn't fit. We will probably never know, but because Susie is special we believe that in her own way she knows and understands it.
Her pink shirt says, "I(heart)my Governator"

Our family has always lived far apart with each other. Different countries and states and kept us far from Susie. Since the early 80's my parents have lived in either Montana or Utah so they would visit her quite a few times a year. There was always the same routine. Call beforehand to let the home know that family was visiting. Pick her up and visit for a few minutes then take her on a drive and get a root beer. Cassettes tapes of her favorite music would be playing and Susie would sing every word. She especially loved the old Christmas album of Patti Page. It is still one of my favorite Christmas songs. Lou and I would put that album on the record player and sing all the songs over and over. My parents would then tell her all about the family. Let her know what each of us were doing, where we were living, what our kids were up too. Sometimes though, my parents would drive all that way, visit with her at home and then wouldn't want to go for a drive. She was "all done". Telephone conversations can be long or very very short. When Susie is done, Susie is done.

Susie is a character, she is smart, she has the prettiest hands, she loves her family, she loves Arnold and Pinocchio, she loves to sing and hold things and she is blessed. She doesn't need to experience this life in the way that we need to in order to progress. She has it made in the shade! And won't it be great when we can all be together again?

So thank you again Susan for your interest in autistic children. You are the perfect person for the job and I know those kids love you!

10 comments:

USAUS said...

That was very tender Lee Lee... I see Susie in the hereafter just as beautiful and kind as you and Marilou and with an inquisitive mind like your brother. But for now, isn't it great to just love and enjoy her with her Arnold adventures?!

mama jo said...

that was really sweet and i loved hearing about your sister..

Kari said...

What an awesome blog post! I could feel the tears coming. Yes, times have indeed changed on the care and resources available for kids with special needs.

Jan said...

I loved your comments about your sister. So sweet and intuitive. All the things that are now available to families and kids with autism/special needs really make a difference.

Susan, Susie, Suz said...

This is just what I was hoping for when I posted about MY autism experiences!

I didn't know you even had another sister. I often ask the more-experienced aides and teachers, "But what happens to these kids when they are grown?" Thanks for opening my eyes a bit more...

I think Susie and I would be very good friends if we could hang out...

Marilou said...

Wow Lee Lee that was such a great surprise to see that post about Susie. You did a great job and I learned a few things that I didn't even know. I didn't know that daddy built a contraption for Susie to play with. And.....I think we were 7 when she pushed "you" down the stairs. It's funny because we have been telling people that same story for years and here I thought it was you. And you thought it was me. So funny. Guess we will have to ask daddy won't we?

stone's eye view said...

I just saw your blog on Becca's blog, it has been real nice to "catch up." I really enjoyed reading.
sachie

i'm kelly said...

what a beautiful post, i never even knew about your sister. it sounds like you really love her.

Gail said...

What a tender story of Susie's influence on your life. You pointed out the positive moments and wonders of having a sister with a disability. Susie has taught your family about unconditional love and joy in simple things. And you are so right about her "spot" in heaven. Our responsibility is to live worthy to be with her. Thanks for sharing this special piece of your family life.

Dad said...

Lee Lee, thank you so much for your memories of Susan. I didn't realize you remembered so much. She is a special gift to us and we must always stay in touch with her to keep her memories fresh.

Dad