AUTISM: The Diagnosis

***When our son, Andrew, was first diagnosed, we started a blog (that we didn’t keep up with very well) called “Andrew’s Journey”. This is the first entry in that blog (edited for this post’s purposes).***

Andrew at 2

It seems like a lifetime ago that our pediatrician said to us that there was a possibility our sweet 2 year old, Andrew, might be autistic. It seemed unreal and I didn’t want to believe it was possible, so I just didn’t. But we agreed to have him tested to ease our doctor’s mind. What was the harm?

The first evaluation was with the Tennessee Early Intervention Services (TEIS). They nailed down his developmental delay and speech delay, but didn’t see anything that pointed to autism. We’re golden. (Sigh of relief.)

A couple of months later, received an unexpected call from the Vanderbilt Children’s Development Center. Apparently, Andrew was on their wait list to be tested by their psychologist. Okay, so this is the autism evaluation. Hold breath again. After solving a little hiccup with insurance (aren’t those fun?), we prepared ourselves for the 4 hour evaluation.

The test itself was pretty comprehensive. They asked me a LOT of questions and played with Andrew in both structured and freeform activities. There was no doubt in my mind they would confirm TEIS’s findings of some developmental delays and a speech delay.

I miss that ignorance.

After all was said and done, the diagnosis was “Autism Spectrum Disorder”.  No one was more shocked than I.  I mean, I knew he had some challenges, but nothing I had read in my (admittedly limited) research on signs of autism seemed to fit my little Andrew.

So right there, in front of the evaluating team members, I started to cry. And cry and cry and cry. I didn’t stop crying for an hour. I cried when I told my husband on the phone while Andrew and I made our way home. I cried when I told my parents. I cried as I looked at my sweet boy in the back seat who had, in my opinion, been given a life sentence.

Over the next few days, my husband and I grieved. We grieved the life we had hoped for Andrew and the inability to use the word “perfect” in the same sentence with “Andrew”. And I was angry with God and the choice He had made for my son. So angry that, even a week and a half later, I couldn’t bring myself to pray.

In the next week, Greg and I dove into the information Vanderbilt had provided us (they sent me home with a packet). And, the more we read, the more overwhelmed we became. There seemed to be two questions pop up for every one answered. But neither of us wanted to trust the internet.

I knew Andrew was (and is) the same boy he was before the diagnosis, that we now simply have a name for what he’s struggling with. It just takes a little while for that realization to travel from my head to my heart. And my husband and I have both struggled with the inability to call him “our perfect little boy” anymore.

Once I was able to get my head above water, I started sharing with my closest friends. The amount of love, support, and sympathy we received was so touching. One of my dear, sweet friends and sisters in Christ shared a truth with me that has really been a turning point for me in my own journey to process the diagnosis. After she extended her sympathies and assured me we were in her thoughts and prayers, she then said, “Praise Jesus that Andrew was fearfully and wonderfully made. And while this diagnosis is a shock to you all, it is not a shock to the One Who formed him in your womb.”

At first I thought it was odd that we should praise Him at all, but my heart softened to this truth and I began to see light in the midst of my grief. Andrew is fearfully and wonderfully made. God promises this. God formed him in my womb. And for whatever reason, this was always His plan for us and for Andrew. The truth is that He will lead us and equip us on this uncertain road with all of it’s ups and downs, twists and turns. Even more than that, I can begin to say that Andrew is perfect…because God made him and he is a miracle.

***

The blog article went on to share our intentions for the blog.

But, I want to share with each of you that this road has been hard, it’s been sweet, it’s been trying…it’s been everything it promised to be and more. And Andrew is just 6! But the victories have been tear jerkers. The first time he spontaneously said, “Mommy, I love you”, I had to bite my lip to keep from bawling in front of him. And those months when he would self-harm were heart wrenching as you can imagine.

No, it’s not easy. It’s not fun. But it is his journey. Our journey.

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