Volume II  Issue No. 6
December 2005

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 Stepping Stones
Archived Stories

Bittersweet Lessons - October 2005

 

I have 2 siblings and they both have autism. Having both a disabled brother and sister really teaches you how to be more compassionate and have a more appreciative outlook towards life. My family and I have been through many hardships together, and at this point in life I believe that we have turned out as improved people than if we were perfectly normal. My brother and sister have become an influential part in shaping all of our personalities and characters. For one thing, they have made all of us be more aware of other disabled children and their needs have introduced us to wonderful people who have become great friends and helpers through tough experiences.

Jena, my sister, is the main reason for us meeting such amazing people. Since she requires constant supervision, (and generally my parents are both out working), either therapists or Respite Care workers come to our house and “interact” with Jena after school. To work with a disabled child for 3 hours generally one needs quite a bit of patience and sympathy. Most of the therapists that come over are incredible people, and we (as a family) have gotten to know them as friends and rely on them in rough times.

Jena also has a special gluten, casein, and dairy-free diet that greatly restricts what she eats. This has shaped our meals into very healthy experiments. Even when we bake cakes, we use such ingredients as brown rice flour and brown sugar to cope with my sister’s needs (and xanthan gum to make it all stick together). She has caused all of us to eat more nutritiously and have a “healthier” lifestyle.

Sammy, (who has cerebral palsy as well as autism), has an incredible musical gift of singing. He takes singing lessons weekly every Tuesday. When he performs at recitals, it often sends more than one person into tears – it is greatly inspiring to see him standing with his walker singing his heart out. My father remembers one recital where an elderly lady approached him crying, “Sammy is a glory to God. He’s an inspiration to us all.”

Also, Sammy has taught all of us patience. Trying to help him with his homework or showing him how to play a new game is not the easiest task. Learning to cope with frustration and more than a little bit of anger over the years really teaches you to be grateful for little triumphs and pleasures. For instance, explaining to him a very easy concept – [such as] simplifying fractions – is extremely hard for his mind to grasp. After attempt after attempt to show him how, he still doesn’t get it, and his short attention span doesn’t help. More than once I have simply just given up trying to be nice to him or introduce him to a new experience and stomped away to my room. But of course over the years I have tried different ways of dealing with all the stress and worry, and gradually things actually do work out, and the next time something like that happens the anger doesn’t seem to boil over so much anymore.
(Lydia performing the fan dance in 10/2004 with her Washington Korean Dance Co. Lydia is kneeling most to the right, viewer's perspective, facing front).

Jena and Sam are both very unique people, and a lot of trials and happiness have come from both of them. Our whole family has learned many precious lessons from caring and watching over both of them, and I think we all have become better people.