Sunday, February 14, 2010

Who Do I Explain Autism To & When?

I don't know if other parents of children with autism struggle with my current struggle or not. With an autism diagnosis two years in our rearview mirror I am wondering now how often and who do I explain Aleks' condition to. Am I obligated to tell every person who has to spend time with her in a caregiving role? If so, do I tell them about autism or do I explain it in an easier way such as a learning disability or that she struggles with social interaction? I started really wondering this when Aleks started going to swim lessons. From the outside looking in, I would have thought that she was being difficult at times and just wouldn't listen. I finally told the instructor at week 4 that she struggles with some learning and social issues. I don't think that the instructor got what I was trying to say, which lead me to my current question. Who, when and how much do I explain about my child's autism?

I struggle too with wanting others to be more tolerant and understanding, but I'm also afraid of her being locked into a stereotype. What is the right choice? To let others think what they want of her or to explain it in hopes that she'll receive more compassion and understanding. What I'm not wanting to do is make excuses for her when she acts up like a typical child. The problem is that even I don't always know what is autistic behavior and what is 4-5 year old. Sometimes I think it's a little of both and then what do I say?

As Kindergarten is fast approaching I find that the challenges are different and ever evolving. I so want to do what is right and honorable for her. I want to empower her for who she is and all that she is. She is a loving, beautiful and smart little girl who has autism. She didn't ask for it and doesn't ask for any extra understanding. What she does deserve and need is kindness, respect and understanding. I am not always sure how to get this for her, but I know that for now it is my job to fight for her in all that I can.

Blessings-
Melissa

2 comments:

Anonymous said...

Dear Melissa,
I have three children my two sons have Autism and I struggled with the same questions that you wrote about. I have decided that i just need to take one situation at a time. Whenever there are other children involved I always put The boys Cute T-shirts on that I made them that say, "I have Autism." Please Excuse me. I do this more for the parents than the other kids. It makes me feel like I am not rehashing there Diagnosis to everyone all the time. I also find that when or if someone reads the t-shirt thay ask me questions and then I answer only those that they ask. Lord knows we could talk for hours about it but we as mothers do not have the time nor the energy to constantly educate the world. I feel that People that really want to understand will ask questions or will educate themselves by reading about Autism etc. You will also have people that are content to be ignorant and no matter what you say they will always have an idea of how you need to parent your child. I also look at Autism as a gift. My 2nd son is advanced ahead of his age group in accademics. In fact he passed a test to apply for gifted and talented school. There is nothing our kids can't do. Sometimes they just take a different or longer road.

Nick said...

Just listened to your birthday party worries. Fear not! I put a party together in about a week. My son wanted a Pixar "Up" birthday. Thank you also for being another advocate for my child with special needs. I've got some pics of Caleb's birthday on my blog if your interested. Also I just posted about mother advocacy today.
Have a great day!