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JUST BEING ME

 My name is Shukriyyil Miller, but everyone calls me "Shukiy".  I am 8 years old and I have no "real" friends.  I go to school everyday with children just like me.  We have autism.

     My older brother is 2 years older than me and he has autism too.  Something really cool just happened to him, he went to a classroom with really special kids that don't have autism at all.  My mom cried.  I laughed.  I always laugh when someone cries -- I can't help it, I have autism and it makes me do that.  It makes me love to be squeezed too.  I know that my big brother was nervous on his first day.  We always get nervous when we go somewhere new, don't know what to expect, do something different or are around people we don't know.  But he's real brave.  I know because he is my big brother and we spend a lot of time together.  We are best friends I guess, since we are all we have--except for my older sister (she is 12).  She doesn't get as embarrassed by us when we all go out together--at least not as much as she used to, and she plays with us at home a lot more than she used to too.  Mom says she treats us the way all big sisters treat big brothers -- she's a bully.  I have fun getting on her nerves when she is in a good mood.  I wouldn't dare do it when she isn't because she can get really mean, even though she loves me and would never hurt me.  

Waiting for the bus

     I hope my big brother will learn to play and have friends in his new class, when he isn't learning book stuff, and that he will come home and teach it to me.  You see, we do things together now that we didn't do before.  It was as if we were invisible to each other back then.  Now we "hang out" together in our own way, which though it may look weird to you, is a lot of fun to us.  You see, even though we both have autism, we are a lot different.  My big brother doesn't speak at all and I speak very little.  But we communicate in our own way.  We laugh and spin around in circles and clap and flap and make strange noises.  Mom says I sound like a seagull and he sounds like a baby chick.  She spends a lot of time staring at us and smiling.  Dad calls her the "doting mom".      

      I know my colors and numbers and even though holding a pencil drives me crazy, I can even write a little. Because of autism my sense of touch is a little off, so I only eat things that feel and smell good to me, and things between my fingers and toes or even touching my face really "creep me out".  

Homework with Dad

Usually my teachers have to help me with my work or at least keep reminding me what to do.  They say that I know a lot more than I am able or willing to show them and it can be very hard for them sometimes.  I am doing much better now that I know what they want me to do, but it did take me a little while longer than other kids to learn and understand. 

     I often have trouble getting people to understand what I want or need, and a lot of the time they have the same trouble getting me to understand them, but every day we work on ways to make communication easier.   

Just A Little Video Rewind Time!

     I like to run and jump, and play in water.  I could stay in the bathtub forever!  I have a huge collection of favorite videos and I watch them all, although most of the time I like to run around in front of the TV rewinding over and over again to my favorite parts.  I have broken at least 4 VCRs that way, and it drives mom and dad crazy!  I enjoy swinging at the park, but not too high.   I can't stand when my feet are off the ground.  I love to read and used to repeat pages and pages of 'Green Eggs and Ham'.  "I am Sam!…That Sam I am, That Sam I am, I do not like that Sam I am". 

       So you see, while my brother and I both have autism, we are both very different.  I can be the "class clown" sometimes, while he is usually always the serious scholar.  I will only eat pasta, apples and microwaved hotdogs, while he eats almost everything that isn't tied down.  He loves sweets and I really don’t.  I like to watch TV, read books and use the computer, while he does puzzles, studies maps, builds and collects things.  He could speak clearly when he was little, then suddenly wasn’t able to anymore. I didn't speak at all when I was little, but am learning very slowly now.  I am always laughing and happy and he sometimes cries for a long time for no reason.  So you see, while there are a lot of things that make us the same, there are just as many that make us different.  That's why autism is known as ASD, autism spectrum disorder.

     I am very happy with just being me, and living the way I do, but it would really be terrific to make some new friends and do things like other boys do.  Many people don't know enough about autism or me to get to know me, or children just like me -- I guess they're sort of afraid.  So, I'm hoping that my big brother will teach them not to be afraid of us. I'm hoping that he will be so good in his new classroom that the special teachers and their special kids will not only let him stay there all the time but they will let me come to their classroom too.   

(Written for Shukiy by his Mom -- Sylvia Miller)

Sylvia is a CARD Parent Partner and can be reached at (352) 687-2257 or by email to sajm19@wmconnect.com

 The Center for Autism and Related Disabilities (CARD) UF/Gainesville has extended its services to include Parent Partners who are parents of children with autism living in Marion County and the other areas they serve.  These parents are available to assist (through their own experience and CARD training), with the challenges associated with parenting children with autism and related disabilities.  For more information about autism, CARD and the Parent Partner Program, contact Caroline Raye, Community Services Coordinator, CARD (352) 846-3701. Visit their website at http://www.card.ufl.edu

 

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