Raising a child with a disability is hard, painful, and scary

For 20 years, my family has been on a journey that is different than most families.  My husband and I were young and in love, and the natural consequence of young love is children.  So at the age of 25, I gave birth to a precious baby boy.  That boy was very precocious and he amazed everyone with his giftedness.  No joke, he was reading before he was out of diapers, but he also had social and communication delays that concerned us.  When he was three years old, we contacted our school system and had him evaluated.  He was amazing and gifted, they told us, but they also told us that he had autism.

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After grief, I have found a tenuous peace

This past September, I was dangerously close to walking away from my faith.  I was SO angry at God, railing at Him because my son was sick.  Again.  Not just a cold or a stomach virus, but sick.  The kind that involved doctor’s offices, recurring labs, scary medications, and procedures.  And I was so ticked at God for allowing this to happen.  I needed someone to blame, and God was at the center of my bullseye.

At that point I was scared.  I was scared that if something worse happened to me or those I love, I could turn my back on God and walk away from Him forever.  FOREVER.  I understood the anger and bitterness that many feel when they experience devastating, heart-breaking life events.  And it scared me that I would consider walking away from the Heavenly Father that I loved so much.  I was (this) close to just being done with God.

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Our story of autism: Treat the symptoms. Love the child.

We tried everything we could.  I spent hours on the computer searching for something, anything, that would undo our son’s autism.  We tried nutritional supplements.  We tried the newest and greatest therapies.  We looked for underlying health problems that could trigger autism.  And by the time he was five years old, I was exhausted, caught in a never-ending battle to find my little boy.

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A friend from church dropped by the house and gave me a sheet a paper with a verse from Hebrews 4 on it.  “There remains…a rest for the people of God.”  Oh how I longed for this rest!  I was caught up in a whirlwind of special diets, drawing blood, therapists, and doctors visits.  Could I trade it all for rest?  But what about my son?

God spoke to me clearly, an instruction that would guide the next fourteen years as we parented our child with a disability:

“TREAT THE SYMPTOMS.  LOVE THE CHILD.”

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My advice to you: It’s okay to Grieve.

Recently I was asked to help a college student with a project for her class.  She is studying Early Childhood Education at ECU and she needed to interview a family with a child who had a disability.  Fifteen years ago my son was diagnosed with autism.  We are that family.

Most of the initial questions were routine.  How did you know that your son had autism?  What services did he receive in school?  How old was he when he was diagnosed? And then she asked one that really made me think.  “What advice would you give other parents who have children with disabilities?”  I sat in silence for a few minutes and searched my heart and mind for the right answer.  My answer was simple, only four words:

It’s okay to grieve.  

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