Adults with Fragile X

I was looking into the latest news on fragile X this morning and ran across this excellent first-person narrative.  A mom with 3 adult fragile X children gives her viewpoint of life after high school graduation.

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The original story is here.

Friends and feathers

By JEANNIE LANCASTER- “Chicken Soup for the Empty Nester’s Soul”

Reprinted by permission of Jeannie Lancaster. (c)2007 Jeannie Lancaster.* * *

“Be gentle with the young.” — Juvenal

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A mother reflects on feathering her nest.

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Many of my friends belong to a club I will never join. They meet every other month to commiserate and also celebrate the unexpected joys and sorrows of empty nesting. They discuss the changing landscape of their days, with children gone and husbands coming home following retirement.

“I don’t know what I’m going to do with my husband home all day,” said a friend to me recently.

“The house feels so empty now,” shared another whose last child recently moved out.

This past week, another friend excitedly announced, “My husband and I are taking a 10-day trip to the Bahamas.”

As I listen to my friends, I feel a sense of loss, knowing I may never share these experiences. My nest may never be completely empty. My three adult children are challenged by Fragile X Syndrome, a genetic abnormality that causes developmental delays, severe learning disabilities and emotional problems. For now, they have chosen to continue living with my husband and me.

A few years ago, we built a new home with an attached garden-level apartment to allow them a larger measure of independence. They cook their meals, buy groceries, do laundry and manage countless other things that occur with day-to-day living. Their space is open to ours, and they frequently pop up to visit, share a movie or a meal, or just hang out. We are rarely totally alone.

I could spend my days grieving the difference of our life — and sometimes I do. But I’ve come to realize that being different isn’t necessarily bad, it’s just different. I could foolishly waste my time lamenting things that cannot be changed, but when I do so, I fail to savor the blessings of our uncommon life.

Instead of emptying my nest, I am feathering it with the rich and unexpected joys that come with parenting those with special needs.

My nest is feathered with humor. My children have grown into delightful people. Each has a wacky sense of humor that lifts us, makes us smile and provides great comic relief.

During a recent road trip from our home in Colorado to visit family in Utah, my two large adult sons began performing a segment from the movie “Shrek.”

“Are we there yet?” one son asked in a perfect Donkey voice.

“No, Donkey,” replied our 30-year-old Shrek.

As they continued through the entire dialogue mimicking to perfection the voices, we laughed away the miles.

I’m feathering my nest with gratitude. All of my children participated in high-school graduation. My daughter attended classes at a local community college. They have jobs within our community working with caring, supportive people.

My nest is feathered with faith — knowing that a caring, compassionate God loves my children as I do and that He understands when I want to scream at the uniqueness of our life.

And finally, I’m feathering my nest with learned perspective. I have been allowed to look at life through different eyes, to see small achievements as reasons for large celebrations, to embrace simple pleasures. This nest of mine that may never be completely empty is warm and good — feathered with love and joy.

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Austin’s EEG & X-Ray’s

Our family doctor called us yesterday and Austin’s EEG and X-rays’s all came back negative.  So he is good on seizures and spondylosis. 

What does that mean?

That means that they think the problem could be behavioral.  He has been referred to a doctor who tests for ADHD and other types of things.  We don’t have that appointment yet but I’m sure it will be 2-3 months down the road. 

In the meantime, he is failing two of his core classes.  Kevin and I are both lost on how to help him bring those grades up.  His counselor told him and Kevin that it was on Austin’s back.  Austin has the ability to do it.  I think there has to be some way we can help him get better organized or something so he can do better with those grades.  We have tried various methods with him but he still doesn’t turn in his homework.  It’s frustrating.