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What special rules for survival do you habitually follow as a person living with a disability?

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Special Rules for Survival -
Rules for living with a disabled person

Name: Debbie H.
Email: hosseini58@home.com
Date: 31 Dec 2000
Time: 00:18:25

Story

I have a six year old autistic son and have developed many survival rules. The main rule has been when asking the question "Why us?" is to thank God for the opportunity that our child has given our family. It is very easy to feel sorry for oneself and to compare ourselves with "normal" families and say we have it so much harder, but that would be doing our son and our family a disservice. Instead of looking at what we have to give up (extended family vacations, family dinner's out at restaurants, the loss of spontaneity) or what embarrassments we have to endure (public temper tantrums), it is much more rewarding to look at what our son has given our family. Our son has given our family such gifts as compassion for others who are different, tolerance, patience and an appreciation for small things that most people would take for granted. He has specifically given me a strong sense of purpose.

The second rule is to open ourselves to any knowledge or opportunity that may come to heighten our understanding of our son's condition or may help us to help him. For example, I was at a Regional Center meeting and happened to sit next to a woman who had her four-year old autistic son on a Gluten Free - Casein Free (GFCF) diet. She was a strong advocate of this type of diet. I felt that I was sitting next to her because she had information that I needed to know. Not long after, we hired a tutor who worked with this woman's son. Our tutor had observed first-hand the improvements this child had made while on the GFCF diet. With the tutor's encouragement, we decided to put our son on this diet and were almost immediately impressed with his increase in language and awareness. It is important to pay attention to coincidences. I read somewhere that the coincidences that happen in our lives are guideposts that are telling us that our physical journey in this world is in agreement with what our soul has come here to learn.

The third rule is more mundane. Everything needs to be spelled out and explained. We have no spontaneity in our family. If going on a day trip, we must explain the entire trip to my son before leaving the house. We must also explain any deviations that may happen and how we are to behave when things don't go as planned. It is very important for autistic individuals to know what is going to happen and to have a sense of structure in their day and in their lives.

These are but a few of the rules our family lives by. There are many more, but that would be a book.

Copyright © 2000 Debbie H. All rights reserved. 

Last changed: February 07, 2008

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