My heart is full as I type. So many emotions to sort though. Do I just blurt it out? Do I keep it to our “inner circle” of friends and family? What is best for her? Will she read these words I type, when she is grown? What will her life look like in five years? What will her life look like in fifteen? What is the next step?
Her world seems okay. She seems untarnished. No labels attached. How can we keep this creative mind, this free, uninhabited soul from viewing herself as different? The bad different. That red hair, spunk for miles, and freckles dancing across her cheeks...that is a good different.
"You are unique, Mackenzie,” we tell her. "When others zig, you zag," we lovingly laugh with her. "God has made you special,” we kiss her head and say.
Will this diagnoses alter the way she views herself? It feels safer to tuck it under a rug and move about as if nothing is out of the ordinary. When others interact with her, we carefully maneuver them around an obstacle, thinking they don't notice....but they do. No amount of bubble wrap or side-stepping is helping. It is beyond us. This isn't about us. This isn't about them. This is about her. She deserves the best parenting we can give. She deserves to have an understanding of herself. She deserves to be okay with the way God has made her mind. It will be okay. It is okay.
"I will always remember Mackenzie,” her doctor says, chuckling, as she skips out of his office. If we only had a dollar for every time someone has said that! This was on the last day of testing for Miss Mackenzie Paige. We knew nothing. We were told it was best for her to see him by herself. This was hard. I had to fight every Momma bear emotion within my very short, 5 foot 1 frame. I would not be telling the truth if I said there weren’t some ears pressed closely to his door throughout the process. It wasn't a lack of trust; he was wonderful. Doctor visits usually mean meltdowns in our world, but he passed the test. She loved him, and he was kind.
Then we headed back, just Ryan and myself, to our last appointment. Ryan seemed to be handling everything like a champ. He is the epitome of wonderful, and a go-with-the-flow-er. I, on the other hand, felt vulnerable, and not quite ready for whatever I was going to hear. We tried to talk about random, fun things; he held my hand as we drove. There was an unsaid understanding. We just went on.
The doctor called us back to his office, we sat, and he began. "Here are the results of the IQ test,” he said. IQ test? I thought we were here to test for autism? This was not in my research.
Admittedly, I had not been able to find much in my hours of research. I knew there had to be sample tests, or videos on parents who were going through the same ordeal, but I couldn't find exactly what I needed. The tests I had found were for younger kids; she is 7. We were past the baby stage, and her "symptoms" were milder. The other videos were for kids who were post-diagnosis.
After what seemed like a massive wave of helpful information, the doctor said, "These findings would indicate a learning disability of some kind." What? Again, mayday. I knew she struggled to read. Her pace is not the same as her siblings’, but we work on it. She is reading… slowly, but reading. She is intelligent; in fact, the way her mind works fascinates me. She doesn't just think outside of the box, she makes her own box. "Try not to compare,” I was always told. “Every child is different, they have their own pace. She is making progress.”
To hear "learning disability" was disconcerting, yet understandable. "So, how does this relate to autism? Do her scores not indicate autism, but a learning disability?" This is simple, I thought. We'll take care of that. I already had a plan in motion along with people to call and books to read. It was as though my mind thought 27 questions and 32 proactive plans ahead, in the space of his speaking. On it, I thought. But there was more.
He began to show us all the testing results from several of us who deal personally with Mackenzie. It was shocking to me. The scores, although independently done, were all very similar. The behavior I was seeing as her mom and teacher were not just being seen through my eyes. The rug had been pulled back, and everyone saw all along.
Yes, she has autism. "ASD" is what it is called, short for, "Autism Spectrum Disorder." Her particular autism was previously called "Asperger’s."
There were not tears. There was quiet relief. Relief may seem like an odd word, but that is exactly what was felt. No more wondering what is going on. No more guilt from side-stepping to avert a meltdown. No more invisible bubble wrap trying to keep her away from a potential verbal nightmare… just an understanding of why, and confirmation of what we had felt all along. Most importantly, we can move from the "why" to the "solutions." There is no cure, per se, but there are many helps. Answers to questions feel good. A plan in action feels good. Hearing from other doctors, moms, and specialists who say, "It's okay...she is okay," feels good.
Why are we making this public knowledge?
1. For her benefit.
We refuse to allow this to be a negative in our home. It has its challenges, and we are learning more each day of what those look like. However, ASD will not be a word that is whispered, as a secret which no one should know. There is a connotation of shame in secrets, and we have no shame in this diagnosis. It is what it is. We will feel a sense of accomplishment when she will be able to say, "I have autism," without shame. Not as a crutch for bad behavior, but as a tool of understanding, and eventually help for others.
2. To be Transparent.
My husband is a pastor. There is an all too common thread that we have seen with those in ministry...to be quiet. Suffer in silence. Keep your personal lives personal. We feel it is vital to see highs and lows of others’ lives. There are lessons in the struggles. Do we not see both in the lives of Biblical characters? David fought Goliath and was king over a nation, but yet sinned with Bathsheba. Job was a very blessed man, but in an instant his life was altered by the killing of his family and loss of possessions… yet he remained faithful. We do not see Job "keeping quiet." We see pain, and questioning, and yet faithfulness to the Lord.
3. Because the Lord knows what He is doing.
When we tell her, "God has made you exactly how He wants you, and He loves you," we mean it. Jeremiah 1:5 says, "Before I formed thee in the belly I knew thee;" He formed every bone of her stocky build. He placed that inquisitive mind in her very being. He loves her more than we do. That seems unfathomable. We were gifted her. She is on loan. We are in this together. Autism does not define her… she will define it.
It WILL be just fine. She will be just fine. YOU will be just fine. I can't wait to talk solutions!
I recently read what you wrote about Kenzie...it was beautiful....she is a very precious girl and will grow into a beautiful young woman.Our Lord has great and wonderful plans for her so fear not about her future. There will be challenges ahead but you and Ryan, plus your family and friends as well as others she comes in contact with will help along the way.
I will pray for all of you as you go through all the emotions plus the changes that will come along.
Love, your sister in Christ
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