If there’s one thing I have come to learn over these last few months, it’s that starting over at 54 requires an immense amount of patience. Patience with yourself and patience with the newest little under three. Nothing about this is quick. You must accept that you are playing the long game.
I realized not too long ago when I received the news that Jaxon is on the spectrum and needs various kinds of therapy. According to the analysis that was done in July, my little grand nephew is severely behind all age markers. I sought a few different opinions from others who have experience in the field. They concur. This will require patience.
Earlier today, a Facebook memory popped up, and it was Jaxon when he was a year old. I took him to Loews with me one evening while visiting his great grandmother in St Augustine. We stopped to look at something, and he smiled at me and rolled his tongue around. He made no sounds. His little rolly polly face was so cute and still is. His red hair was lighter than it is now. I never thought for one moment when looking into his beautiful blue eyes that deep below the surface was a child who would be non-verbal today. His giggles melted my heart then, and they still do today. Oh, how I love that little guy.
I am reading a book titled, How To Handle Hard-To-Handle Preschoolers’ by Marlyn Appelbaum. She writes specifically on various behaviors, what they are and how to handle them. The organization that did Jaxon’s analysis gave me several books to read, this being one of them. We have behavior issues, and I thought this would be a great place to start while we wait for formal therapy.
She wrote a chapter on autism. I want to share a few things from the chapter I found very interesting.
“In 2000, when the American Psychiatric Association wrote about autism, they cited the incidence as five cases in ten thousand. Now it is estimated to affect one child in every hundred fifty (Jepson 2007). That is a dramatic increase, which is why it is important for everyone who works with children with ASD (Autism Spectrum Disorder) to be armed with both an understanding of this disorder as well as classroom strategies to help children.”
“One of the most amazing facts about ASD is that in 20 percent of families, children started out with language skills and seemingly normal social interactions (Jepson 2007). Then, sometime in the first or second year, children either stop talking or start engaging in unusual behaviors. I have spoken to many stunned parents. They tell me that they had no idea there was any problem, that their children were fine, and then, wham, their children seemed to totally change.”
Admittedly, I can relate to those parents. Back then, Jaxon appeared to be fine, and then wham, he is non-verbal and way behind on development.
The numbers I shared above were from 13 years ago. I was curious to see if there was any current data on the web, and there is. Check this out:
- In 2020, the CDC reported that approximately 1 in 54 children in the U.S. is diagnosed with an autism spectrum disorder (ASD), according to 2016 data.
According to the data above, we had gone from one in every one hundred fifty in 2007 to one in fifty-four in 2016.
I don’t have current data after 2016, but I imagine the numbers continue to tighten on how many children are affected.
Sad but true.
There are varying opinions on the cause, but honestly, I do not know, and I do not have the skillset or knowledge to say one way or another. Some say children are born this way, others say it’s vaccine-related, and others don’t know.
All I know is it is now a reality in my home. The amount of information out there is incredible, and as I was telling his speech therapist today, when she asked how I was handling the diagnosis, I said, “Where do you begin? What do you tackle first? I know one thing, patience is required.”
Jaxon is non-verbal, behind developmentally, has behavior issues and sensory issues. What do you tackle first, or do you go for a broadened approach? These are all questions I am exploring and seeking advice from others who have traveled this road before me.
A major key? Start early prevention now, and that’s what we are attempting to do.
One of the biggest blessings I have received in the midst of this trial is the amount of moral support from friends and family and strangers in Facebook groups struggling with the same questions about their own kids.
There are thousands of parents and grandparents in the same boat. There’s a well of knowledge among them, but I also feel their pain and frustration. Many are grieving the loss of what they would call normal family gatherings, normal birthday parties, regular school, and carefree living.
I read post after post of one therapy session after another; lonely living fight for rights, disappointment upon disappointment, and overwhelmed healthcare and behavioral systems. The waiting lists are long to see specialists, and the options are scattered depending on your ability to pay.
I also read about those who celebrate milestones that seem insignificant to some parents but are huge to others.
One size does not fit all.
From what I am learning, there’s no one-size-fits-all in autism. Wait till I share what I have read on sensory integration. Mind-blowing.
I want to close out with some hope because it’s what keeps me going. Thinking about everything that goes with this diagnosis can be very overwhelming for sure. But I am reminded as I type this that the Lord is more than capable of helping me carry my burdens. I am thankful when I consider Jaxon isn’t three yet, and we are making a little progress with getting help and a diagnosis. We have a long way to go and some red tape to cut through, but it’s better than sitting here doing nothing as the clock ticks by.
I don’t know what the future holds, but I know who holds the future, and it’s in him I trust to see me through each day. Some days are worse than others, but I think others can say the same thing. The long game requires patience, and if there is one thing I can attest to – the Lord has been patient with me. He is the example I need to follow as I walk this path each day.
Hold fast to faith, look up, and never forget who is in control.
James 5:7, “Be patient, therefore, brothers, until the coming of the Lord. See how the farmer waits for the precious fruit of the earth, being patient about it, until it receives the early and the late rains.”
The Teaching Lady