Cultural challenge of the week: The imperfect child
Sarah is a beautiful 3-year-old. She loves Honey Nut Cheerios, nursery rhymes and playing on the playground. But lately, it almost breaks her mother's heart to see Sarah out there with the other children. With a recent diagnosis of autism, Sarah shows less carefree play and childhood "firsts" on the playground and more markers of how quickly "normal" has slipped away.
Sarah is regressing into a world of little communication, rigid routines and odd obsessions. Right now, she is fascinated with spinning objects and fixates on the old-fashioned carousel in the center of the playground. She has no interest in playing with other children, and loud noises upset her to the point of tantrums. Her mother is crushed and defensive, a first-time mom in a play group of seemingly perfect mothers and children.
Where is her playful, loving, happy little girl? What happened to the girl who ran up to her father for a hug when he got home? (Now she rarely meets his eyes and wriggles fiercely out of his grasp.) Sarah's parents love their daughter, but they are awash in broken dreams, hearts aching for the child who once was and bewildered by the child who has taken her place.
A special-needs diagnosis, whether autism, Down syndrome, cerebral palsy or something less common, sends shock waves through a family — shock waves that reverberate for a long time. When a child is born, parents immerse themselves in the present and joyfully imagine the future. A girl's father dreams of the day he will walk his little girl down the aisle, and her mother anticipates the birthday parties, play dates, and mother-daughter talks that lie ahead.
But a special-needs diagnosis radically changes — and sometimes ends — these dreams. Parents need to give themselves permission to grieve those lost dreams, not unlike mourning the future lost when a loved one dies too soon. Be patient with yourself. Grief has no timetable and follows no formula. (A parent who discovers her son will be born with Down syndrome experiences a loss different from that of a parent whose child has regressive autism.) Family members — your spouse, the child's siblings, grandparents — also will experience grief in their own ways and times. Be open to professional guidance and support so your family stays strong under stress.
Even in the midst of your grief and loss, however, open your eyes wide and look for the gift. There's something to celebrate in every life and with every child, no matter what challenges lie ahead.
How to save your family: Love your child — as is
As your emotions move through various stages, keep your head and your heart aimed toward one thing: to love your child, as is. That's how God loves us. He loves each one of us completely, in spite of our hidden defects and obvious flaws, and most especially when we feel most unlovable. He will help us love our child the same way. No, you're not a bad or faithless mom or dad because you're sad, angry or scared about what the future holds. That's normal. Lean on Him and accept the strength that comes when you acknowledge your need for the Lord's help.
Acceptance doesn't wipe out negative emotions. It puts them into context. Joy, like sadness, ebbs and flows with time. Even though you love and fully accept your special-needs child, you may experience moments when you realize anew that your child won't reach certain milestones. Attending a niece's wedding or a nephew's college graduation, for example, may renew your sense of loss. Acknowledge it, fortify yourself and keep going.
Acceptance also doesn't mean that you stop fighting for your child. On the contrary, love will stir you to become your child's fearless advocate. You may discover strengths you didn't know you had.
Seek support and involvement in the special-needs community. You need the company of parents who know exactly how you feel, and you will benefit from the networks and resources that they will share. The Special Olympics, for example, provides a wonderful experience for children with special needs — and offers a fantastic opportunity for siblings and other family members to help others. Many churches also offer specialized ministries that help your child learn about God in a supportive environment. One of my favorite's — Capernaum — is a ministry for young adults with special needs and can be found through YoungLife.org. An organization I love that has a website families can visit for encouragement and tips, and even to share their personal stories, can be found at ChosenFamilies.org.
Although receiving a special-needs diagnosis may mean lost dreams, it doesn't mean lost love. Love — the deep, forever kind of love — takes root and grows most richly in the soil of difficulty and pain. The fruit of that love ripens sweetly. Sarah's mother discovered that loving her daughter meant loving her as is, rather than wishing for what might have been. Sarah is a different gift from the one her mother imagined. But she's a gift wrapped in love, mysteriously revealed one day at a time. And for that, Sarah's mom is truly grateful.
•Rebecca Hagelin can be reached at firstname.lastname@example.org.