Diagnosis Day, a Guest Post by Jill Sargent Sapp


Today, we are THRILLED to share with you a guest post written by the extremely gifted Jill Sapp, faithful mother to Andrew, a brave and handsome 10 year old boy with Autism, and his equally gorgeous siblings, Henry and Margaret.  During Autism Awareness month each year, Jill writes daily Facebook posts on her life and insights as a mom of a child with autism.  She is a veteran warrior with a true voice that I wish more people could hear.  I asked if I could share with you all one of her Facebook essays…and I hope this is the first of many times that she’ll speak to us.  But today, she shares insights from her journey, and reflections on the day that changed the course of their life as a family, Diagnosis Day.

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January 18, 2007, didn’t change who he was; it changed me.

This photo is one of my favorites. It was Andrew’s 5th birthday. Margaret was 4 days old. He kissed her without prompting and I’m so thankful I caught this precious moment.

Often people are curious how we first realized Andrew had autism. Our story is probably pretty typical of those diagnosed early. Except for a few concerns over gestures, Andrew developed normally until about age 14 months. At that time, he became very sick with a high fever. After a couple of bouts of unexplained fevers, I noticed that he wasn’t saying the words he knew anymore. He also wasn’t really answering to his name. His eye contact was fleeting at best. At first, I thought he had experienced hearing loss with one of the fevers, but he could hear the start of his favorite video from another room. So that didn’t make sense.

I mentioned our concerns at his 15-month check up. Our pediatrician, who is an amazing doctor, wasn’t terribly concerned, but told me I could contact ECI (Early Childhood Intervention) if I wanted. I called them, Andrew qualified for services, and that set into motion the whirlwind of evaluations, therapies and diagnoses that have become our second language…a new reality, in fact.

Technically, ECI doesn’t diagnose disorders, but on January 18, just 6 days after Andrew’s second birthday, the clinician who had evaluated Andrew told me he was on the spectrum. It was a terrible day. All I could think about and read about was autism and what it would mean for our family. For him. For his future. The task was daunting, as I was very pregnant with Henry, worrying over Andrew, and everything I read felt like a threat:

Get him help early and fill every moment with therapy you can’t afford or he will never do anything but stay to himself.

Hurry up or he’ll never speak.

Watch that new baby of yours like a hawk because autism runs in families. In fact, do not for one moment enjoy his infancy, instead fill your time researching ways to avoid sealing his fate with autism, too.

I wouldn’t wish to re-live those early months and years. It felt like a bad dream. Explaining for the tenth time in a week what autism was (and no, it isn’t like Rainman) when I wasn’t really certain I understood it yet. Enduring the criticism and misunderstanding of his behavior when I didn’t even know why he was waving his hands in front of his eyes like that. Writing off the people who responded as if I were a crazy, bored housewife just looking for something to be wrong with my child. I was so lonely.

A phrase is used frequently in the autism community when referring to diagnosis: “Your child is the same person he was yesterday before receiving this label. And he will be the same precious child tomorrow. The diagnosis doesn’t change that.” And it is absolutely true, but the diagnosis changed someone. And that person is me.

I’m not saying I was a terrible ogre of a person prior to Andrew’s diagnosis. In fact, I think as a teacher and guidance counselor who actually chose to work with those aliens we call teenagers, I was probably rather sensitive and kind. But Andrew has taught me more lessons in kindness and sensitivity than I thought possible. He has taught me to see the flip side of the coin on an issue much faster than I could before. Shown me that my first assessment of a person’s behavior and choices isn’t always accurate. In fact, my opinion often doesn’t matter at all. He has shown me that I don’t always realize the pain that another person may be enduring. Their pain might be caused by an unexpected diagnosis, a failed relationship, abuse, the death of a loved one, someone else’s poor choices or any other life experience. No one’s experiences are exactly the same, but we can all relate. We can all open our eyes and hearts. Andrew taught me that being self-reliant was a fault, not a positive quality. That admitting I need not only tangible help from family and friends, but comfort from our Lord does not make me weak. I could have missed these truths without Andrew.

So yes, Andrew was the same precious, prayed-for child on January 18, 2007, as he was the day prior and the day after. He’s the same today. But I’m better for having loved him. I pray I continue to learn from this golden boy of ours.

“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.” 2 Corinthians 1:3-4

 

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