Originally from Grosse Pointe News on 4-22-10.
Posted w/ permission.
Mary Beth Langan posted this on an internet group where parents
chat about autism.
COLUMN NAME: X-tra Special Advice
BY: Mary Beth Langan and Theodore G. Coutilish
HEAD: Honest answers may not be the desired answers
COPY: As parents of a child with Fragile X Syndrome and autism, we are often asked about our son, Andrew, 9.
“Is he getting any better?”
“How is he feeling?”
“Is there any progress?”
The questions are often very well meaning and a way for people to show they care about our family. The problem is not always knowing how to respond. It’s not easy. Sometimes, it requires thought to give a truly honest, well-balanced answer and we don’t always have the time, especially in passing. Especially if Andrew is with us and is his usual not-so-patient self.
Like many children, his growth, maturity and development are full of victories and spoils, celebrations and frustrations, and pleasant surprises and unpleasant disasters. At times, it’s one step forward and three steps back. Minor milestones can be wiped away as fast as you can say “C is for Cookie”.
There are three basic ways to handle these situations:
1. Politely lie and tell them the short version of what they want to hear. “Yes, he’s doing fine and growing tall. Thank you for asking. You’re so kind.”
2.Tell them only the positive parts of the true story. “At age 9, he’s using a sports bottle instead of a sippy cup. He is doing much better with his toileting skills. He recently sat through an entire assembly at school! Thank you for asking. You’re so kind.”
3.Tell them a mixture of life as we know it. “Some days are exhausting. He had a major meltdown yesterday, ripped up a book and did unmentionable things on our carpet. He’s still essentially nonverbal. On the positive side, his toileting skills are improving and when he’s happy, he has the best smile in the world! Thank you for asking. You’re so kind.”
Lately, we tend to choose number three.
It takes longer to explain, there are more details and some times follow-up questions, you risk bringing down the conversation, it takes more effort and patience, and you may see a pity reaction.
Please, save your pity. We do not need it — or want it. But we do appreciate your understanding of our real life. Not just the glossy version.
Andrew, like all children, has his own beautiful gifts. We know some of them and others are revealing themselves to us in God’s own sweet time. He knows the computer better than some children his age, figured out Dad’s iPhone faster than his mother, has the most contagious laugh you ever heard, and cracks up all three of us from time to time.
Like one recent Saturday when he gave his dad a baseball hat to wear to Eastern Market after Dad was coming out of the shower with shower hair. Only Andrew had bed hair himself. People in glass houses… you know the rest.
We appreciate the questions about life with Andrew. Please keep them coming and thank you.
It’s up to us how to respond.
Honesty is still, and always will be, the best policy.
Grosse Pointe residents Theodore G. Coutilish and Mary Beth Langan created this column to share experiences from their journey as parents of a child with Fragile X syndrome [fragilex.org]. Send your questions or comments to mblangan@....