Tuesday, April 17, 2012

Step 17: The secret thoughts of autism...

Understanding Joy - Finding Hope

I was obviously nervous as I was being led down that tiny hallway on the “JOY” tour. This space was an allocated area for Graceview church’s disability ministry, The JOY Ministry. I had volunteered to help watch the kids while their parents attended a bible study class.

A volunteer passed us by as she was pulling a young boy in a bright purple wagon. The director stopped and proclaimed, “This is Brandon. He has Autism.” To my knowledge, I had never met anyone with Autism before. I smiled at him and said, “Hi Brandon. Are you having fun?” before he could reply the director informed me that Brandon didn’t speak. “He’s nonverbal.” I might have been sad for him but I was too concerned that Brandon kept putting his hand on the tires as he was being pulled away.

I remember wanting the tour to come to an end right then and there, because Brandon was why I was there in the first place. He’s the reason that I volunteered. You see, my son had begun displaying classic signs and symptoms of Autism. I didn’t realize at the time that his were “classic”, nor would I admit it, but there I was to investigate this Autism.

When my son, Jason, was diagnosed with PDD-NOS the doctors informed me that it was sort of Pre-Autism. I had known that Brandon was there in The Joy Ministry. I had also heard that he had Autism. He was my only known example of Autism.

This secret I’ve withheld from sharing with Brandon’s mom, now my best friend, who I love very much.

I didn’t want that for my son. I didn’t want him to be like Brandon. I didn’t want my baby to never talk again. I wanted his speech to return as quickly as it was lost. The words that he had before…that blasted doctor appointment where he received the MMR vaccination.

I didn’t want my son to not look at me, as Brandon wouldn’t. I wanted him to look at me with those big blue eyes just like he did a couple of months before.

I was terrified that my son would have a seizure and possibly have to wear a helmet to protect his head. I was offended that my son might have to be pushed around in a stroller when he’s 10 years old.

When I went home that evening I was devastated. I was tortured by what I had seen and my imagination of my son’s future. My emotions rapidly cycled back and forth between grief and denial. I decided to pray…no beg God to heal my son. “Lord, I’ll do anything. Just don’t’ let my son end up like Brandon.”

I’m so ashamed to admit that I ever thought that way. But I did.

Who would want that for their child? Who wouldn’t beg God not to allow this for their child? For ANY child?

Brandon was different and we all know inherently what that means on so many levels. There’s an immediate flood of understanding and loss with not just a diagnosis but an example. A “worst case” scenario. That sounds so horrible and again, I’m flooded with guilt that I ever considered that.

The next time I met Brandon was quite different. I was left alone with him in a room with three sets of double doors. I was informed that Brandon is “fast” and loves to “run”. I was scared out of my mind to have such responsibility for this child.

I have no doubt that he was very much aware of my fear. He took off running straight toward a set of double doors. Adrenaline shot through my veins and I was in quick pursuit. Abruptly he stopped just before the doors and cut his eyes over his shoulder at me with a smirk on his face.

Once I got close he took off across the room to another set of double doors and again, stopped, looked back over his shoulders with that mischievous grin looking to see where I was at.

Fool me once, shame on me. Fool me twice, shame on you.

Brandon didn’t tell me that I could relax…he proved it to me. He wanted to play, not escape. And play we did until we were both wore out.

That was the day that I fell hopelessly in love with Brandon Guppy. Yes, the very day he wrapped himself around my little finger. This would be the beginning of not only one treasured friendship…but two. (Yes, I was friends with Brandon before I was friends with his mom.)

Brandon taught me with no words what a million folks with speech could never.

HE is not lost. WE are lost. Will we take time to find out way to him?

If your answer is no, it’s your most significant loss.

God gave me what I needed most when my son was diagnosed, friendship with Brandon and his mom.

The Guppy family helped me deal with my own ignorance, my own personal grief. We’ve all learned so much. We are not who we would have been had this extraordinary family not been introduced to us…and if we had not been “open” to such a radically different “normal”.

Brandon and Michelle are my mentors, my heroes. I’ve studied him and paid close attention to him over the years, developing a loving relationship, not out of pity but for my own survival.
They taught me to hope when everything in life was providing proof for anything but hope.

Autism SUCKS…Brandon’s unique Autism and my son’s unique Autism. Yet, for me…for my son…if not for Brandon and his Warrior Mom, I have no doubt that my son’s Autism wouldn’t be what it is today…better than it would have been. We are all better for knowing them.

Thank you Michelle for the greatest honor a mother could give another person, your trust in caring for Brandon. I will never take that trust for granted and I will treasure it and take much pride in it.

For the record, I was offended that the special needs ministry was named, "JOY". VERY much offended...probably because I didn't have any at the time. I felt back then that it should be called "Weeping & Gnashing of Teeth Ministry"

Written by Tonya Frye