10/05/2022
Our Scrambled Life
Please let me preface this with. I will always honor my son and his feelings. I share his story with his permission “As long as I don’t have to hear it” was his answer when I asked.
I want to give you a glimpse into our Scrambled Life. Why is it a Scrambled Life?
Austin used to ask “Did _______ just happen, or is my brain scrambled?” “Oh, buddy your brain is scrambled, right now.”. He was very accepting of these feelings, these times of not understanding.
That time quickly turned into times of frustration with an inability of communicating his emotions. This brought outburst, times of true distress. This is when his thoughts of su***de and the wishes of being dead were expressed verbally.
As time has gone on the ability of being able to communicate has decreased, but people don’t see it. See Austin is good at “faking it till you make it”.
The big meltdowns are fewer now, because we have figured out how to read his moods and we avoid things that will set him off. In a lot of ways, we are prisoners to our son.
Austin was born in June 2005. It took us 3 years to conceive him, in fact we had given up, but God said, “everything in my timing not yours” Oh were we over the moon, full of thankfulness and joy.
The dreams we dreamed of what this boy would do, what as a family we would enjoy together. The adventures, the ball games, holiday times, family dinners. The dream of watching him grow and mature into a strong man of God.
Shortly after birth I started noticing somethings were off, he didn’t like to be snuggled, he had low muscle tone, he drooled (a lot), he didn’t coo and babble. He was happiest being left alone. As an Early Childhood Educator, these were red flags.
When he was 2, we finally got him into the specialist to figure out how best to help him. The diagnosis or a label didn’t matter to us. We wanted/needed to figure out how to help him fulfill those dreams we had had for him. But we knew, the dreams we had for him were different than the plans God had set for him. So, we started grieving but we also started fighting. Fighting against family, against society. And more fighting against family.
“You aren’t doing enough to make them behave.”
“You need to s***k them”
“I am going to come to your house and have a plan to fix them”
“He is broken!”
We finally got the diagnosis of Autism, Intellectual Disability, multiple Communication Disorders. We were so happy to have some answers and directions we could go to help him. At the same time Preston was showing some of the same symptoms and we were starting this walk with both boys.
This brought more grieving over lost dreams, more fighting for services to help our boys. It brought more negative interactions with family.
It brought me to a place I never thought my life would be a fighter and an advocate.
We had Shane’s Mother tell us our son was no longer welcome at her house, no longer allowed to be around cousins.
We felt alone; we had nowhere to turn. We were alone, we didn’t have anyone to help point us in the direction of help.
All the while Austin was slipping further down a dark path and regressing.
We had him in a Day Treatment program where he was gaining some amazing skills, but the daily struggle was still very real. The meltdowns were gaining in frequency & level of aggression. The worry and fear were becoming unmanageable.
Everyday was a fight and a struggle.
He had a meltdown at church one night. I took him outside where he stood yelling at me. “Please give me a knife so I can die”
“God hates me, so I hate him”
“I just want to die”
My heart was breaking, but I was thinking “OH my, what is everyone thinking about this” “I really am a bad parent” “How can my child be feeling this way” I felt very judged, the looks in the eyes of those that witnessed this said it all.
In January 2019, we had our biggest crisis. Austin in an online chat threatened to kill our family and he had a plan. To say this broke me is an understatement.
But our God worked miracles and by his great works we were able to get Austin into a new day treatment program.
On February 4, 2019, our family’s lives changed. Austin started a new therapeutic school where he can get the support he needs and learn the skills he needs. These past 4 months have been the best months of his life!
Preston is now able to work on his skills and to work on his trauma from the years of living in a home full of unknown rages.
So why Scrambled Life? Because of Austin and his scrambled brain. But also because our life is a scrambled mix of diagnosis; ASD, ID, ADHD, BP, ODD, OCD, SPD, PTSD, Anxiety, Binge Eating, Communication Disorders, Sleep Disorders, Sight Abnormalities, Diabetes, Scoliosis this is a list of some of the things in our scrambled life.
We no longer grieve of what could have been, we fight and strive for what is to come not only for our family but for those that walk the similar walk that we do.
God has put it on my heart that I am to use our story for good to help our church, our community, our families learn what it means to have and live with mental illness and or a neurological challenges.
We need to learn how to walk alongside these families and love as Christ has loved us.
