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Mothers Face Tough Challenges in Raising Children with Disabilities

Mother’s Day. A celebration of those special people in our lives. I love my mother and my wife, the mother of my children. They were/are amazing. We will celebrate them, and hopefully give them a bit of a break today.

Here’s my “inspiring mother of the moment” who is uplifting others: Or Ami congregant Diane Simon Smith. Diane, a Woodland Hills therapist and mother of two children with disabilities, helped special moms raising special children with disabilities take a break and celebrate. As Sandy Banks in the LATimes (May 9, 2009)writes:

These moms know true love

Deedra Williams doesn’t need breakfast in bed or a spa massage to celebrate Mother’s Day tomorrow.

She received her gift last weekend at a quiet Montecito retreat from 15 women who, like her, are mothers of children with disabilities.

They hiked eucalyptus-shaded hills, listened to music and made collages with pictures cut from magazines. They talked for hours about the challenges of mothering children who may never be able to walk or speak, to go off to college or get married.

And everyone knew better than to interrupt, criticize or offer advice.

“No one tried to fix it here,” explained Williams, a mother of two sons — a “developmentally typical” 7-year-old, and a 14-month-old whose newborn jaundice left him with brain damage, hearing loss and cerebral palsy.

“We can relate to what each one is going through because we’re all in the same boat,” Williams said as we sat at table at La Casa de Maria Retreat with four other mothers.

“What I took away from this weekend,” Williams said, “is acceptance.”

And what I took away was a new appreciation for the unconditional mother-love that many of us give lip service to, as we continually push our children to improve themselves, carrying around our mental check-list of all their shortcomings.

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Raising a disabled child requires a sort of hyper- vigilance. “Motherhood amplified,” Nina Loh called it, describing life with her 7-year-old twins — a “typical” daughter and a son with spina bifida, who has had 13 surgeries and may need more. “The stakes are so high. And there’s really no end in sight.”

Woodland Hills therapist Diane Simon Smith knows the feeling well. The mother of two disabled sons, she began offering “Healing the Mother’s Heart” retreats six years ago, to give women a safe place to vent “the anger, the guilt, the joy . . . all the feelings.”

Smith’s first child was born weighing less than 2 pounds. He was blind, mentally retarded and was never able to “walk, talk, sit, use his hands or feed himself,” she said. He died of pneumonia at 17. His brother, two years younger and now 21, was born with Fragile X Syndrome, an inherited disorder that causes severe cognitive and behavioral problems.

I asked Smith if she felt cheated, robbed of some of the joys of motherhood.

Not cheated, she said, with its implied resentment and bitterness. Just sad, sometimes, “when I hear my friends talking about what their kids are doing . . . going off to college, getting married.”

Every woman around the table talked of feeling isolated, separated from the larger sisterhood of mothers.

“I never wanted to be different,” said Eileen Sunderland, whose 7-year-old son has autism. “I wanted to fit in. . . . But you can’t go to lunch with all the moms at preschool. You can’t meet them in the park, because you always have a therapy appointment or a doctor visit to get to.”

And what do you talk about, anyway, with a mom who complains that her daughter wants pricey True Religion jeans, when you’re trying to get your son to stop flapping his hands like wings.

Still, some said their children’s diagnosis provided an odd sort of relief — a validation of a mother’s instinct that something was wrong, or a vindication of their parenting.

“I thought I was an inadequate mother,” recalled Lisa Hannifin, whose 4 1/2 -year-old son was diagnosed with autism. “I wondered ‘Why am I so stressed out? Why can’t I take my boy to the market?’ Other kids sit in the cart and behave. There must be something very wrong with me.”

For others, the verdict triggered fear, panic and disbelief.

When her daughter, now 5, was diagnosed with autism three years ago, Julia Gosnell “was hyperventilating into a paper bag for 10 minutes.”

Gosnell had every prenatal test her doctor offered during her pregnancy, “because I did not want a child with a disability,” she said. “I really considered myself too selfish. . . . I was a workaholic . . . not really cut out for raising kids.”

But children can stretch a mother’s boundaries.

Since November, when Gosnell was laid off, she has been a stay-at-home mom. Last week, the child she once feared might not speak said, “Mommy, I want to teach you a magic trick.”

Tears spilled down Gosnell’s cheeks as she shared the story. “Her progress has been so astounding in the last seven months, and everybody agrees it’s because I’m home working with her. . . . I’ve learned about patience and love and how to give myself to someone else.”

And about how important a mother is to her child.

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I had to admit on my drive home that I had visited the retreat to turn those moms into an object lesson. I envisioned this column as a reality check for mothers like me — a “see, it could be worse” reminder to count your blessings this Mother’s Day.

But it was their spirit, as much as their stories, that took me down a different path.

The way every description of a child’s disabilities also included the strengths their mothers see: The beautiful smile, the sense of humor, the determination, the innocence.

The way they never labeled their other children “normal,” just “developing typically.”

How much freer would we all be to love if we could let go of our preconceived notions of what our children should do or be? If I worried less about my daughter’s tattoo and appreciated her sense of humor more. Or focused less on the “C” in statistics class and more on the hard work she put in to earn even that.

These women are not saints or martyrs. But they see gifts where others might see only hardships.

“Write this column for them,” Smith told me, as the mothers packed their cars to head back to their families. They are not looking for pity or praise, just acceptance of their challenges.

“We’re not special,” she said. “We’re just human beings, doing what we do with love.”

Just like every other mother.

sandy.banks@latimes.com

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