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

I spent hours on the computer searching for something, anything, that would undo our son’s autism.

We tried everything we could. We tried nutritional supplements, 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.

 

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

A friend from church dropped by the house and gave me a sheet a paper with a verse from Hebrews 4:9 on it.

There remains therefore 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.

 

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

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Unexpected tears during a graveside chat

I stood by my friend’s grave on a warm winter day. I could hear the birds twittering in the trees and the faint roar of the cars from the nearby road. She has been gone for ten years and I visit annually to bring fresh flowers and to update her on the children that she did not see grow up. I shared with her how that little six year old girl is now a 16 year old woman with a boyfriend.   I told with her that the bright eight year old boy with autism was now 18. And as I shared with her the amazing news he was now driving and that he attends college on a scholarship, it was as if I untapped a well of emotion.  Unexpected tears burst forth.  I sobbed at her graveside as I shared how God had done the miraculous with that sweet autistic boy.

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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.  

My Advice to You: It's Okay to Grieve

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