I know fear

That’s the topic for today’s post. I truly know fear. I’ve experienced it in my life as much as you all have and in ways only a few can relate to.

I’ve known it in the form of an abusive father that hated me because I wasn’t his child. I’ve experienced it in embodiment of stepping off a bus on a warm summer morning at 1AM onto some yellow footprints as men in camouflage and campaign covers screamed at me to keep my eyes forward, hold my feet at a 45 degree angle and press my thumbs against the seams of my trousers. I’ve been overcome with it and joy as I held my first-born child, Christopher, wondering how I would screw this up. Oh yes. I have known fear.

In three days I will experience a new kind of fear. Emily, my youngest daughter and child, is scheduled for an all day evaluation to test for learning disabilities. As I write this, we’re concerned that she at least has dyslexia . Anything more than that is the great unknown to us.

Two years ago my wife and I began noticing that her speech wasn’t as clear as Christopher’s or Sarah’s had been at that age. She had a hard time with blended words, particularly words that have an ‘R’ or ‘TH’ sound.

We took her to her doctor for her four-year old check up, informing the doctor in the course of it all that Emily was having problems with her speech. The doctor kindly told us that most children that enjoy a pacifier have this problem and that it would clear up over time. Even telling the doctor that Emily hadn’t had a binkie for over a year got the brush off. It’ll clear up was what we heard then and then again six months later and then six months after that. Two years later we heard the same things but was determined to get a referral for someone qualified to run tests on Emily. Even that was met with resistance.

Other things have come up with Emily’s ability to learn. She has a difficult time going through her ABC’s and 123’s and has only recently understood the alphabet to the letter ‘J’. She’s six years old and it’s been an uphill battle to get someone to recognize that she and Tabitha need help. You can only hear “Go see your doctor” so many time before you want to scream, “That’s what we’ve fucking done and the doctors won’t listen!”

Hell hath no fury like a woman scorned and Hell hath no fear save for that of a mother that won’t be heeded. Tabitha went on the offensive to find a specialist that would do what we needed.

We were lucky to find a wonderful  speech language pathologist that sent our already uneasy minds spiralling further into paranoia. Don’t read that as sarcastic. I mean what I’ve written. She really is wonderful. Anyway, that was the first time that Dyslexia was used in our presence concerning Emily. We’d danced around the word ourselves, using pretty phrases like ‘learning disability’ or ‘educationally incapable’ in its place. Neither of us wanted to use the word. Honestly, we know why.

The youngest of Tabitha’s older sisters has Dyslexia and she’s made a great go of life. Like the oldest sister and Tabitha, she’s excelled in the business and personal world as an adult. With that said, Tabitha has insight into Dyslexia from watching her sister grow up with it. It was a battle that left Tabitha shaken at best. I won’t detail what she witnessed growing up but I will say that every lesson was a battle.

I danced around the word’s usage because I was raised by two people with disabilities. The man who called himself ‘my father’ had Athetoid Cerebral Palsy while my mother had Epilepsy and suffered often from grand mal seizures.

Being the child of  two ‘retards’ and the brother to a girl who had developmental disabilities, I suffered through massive bullying until my sophomore year in high school. I don’t know what changed but most found something else to pick at. Our experiences shape who we are and mine were no different in that facet.

My life growing up with the handicapped has left me sympathetic to their trials and tribulations and how any disability can have a profound effect on those around you and the future.

With each child Tabitha and I became pregnant with, the fear of a disability loomed at the back of our minds. As I looked down at each child, I felt like James Cagney in his portrayal of Lon Chaney, Sr. in The Man of a Thousand Faces. Each time my mind replayed the scene with Mr. Cagney standing over his fictional son’s crib, terrified that the boy was born deaf. And each time I play the scene through with the clap he made that woke his son, crying.

Unlike that scene, there is no clap that will signal everything is okay for millions of parents. The biggest hurdles for the parents of children with a disability of any kind is financial and support in nature.

Case in point,  our insurance isn’t what it once was. Even with that aside no insurance in Tennessee covers testing to discover educational disabilities or educational consultants. If not for the speech pathologist, we’d never have the info of for several consultants. Even finding a pathologist was two weeks work in calling around and getting a mix of misinformation with information. It’s been one major obstacle or roadblock that would leave any parent feeling way past frustrated.

We’re not making millions or even thousands off my writing but we make enough to cover what bills we have. It’s that little extra for Emily’s battery of tests that leaves us scrounging for what we can. We’ve been lucky though. The educational consultant is allowing us a payment plan to pay for the testing to discover what exactly is wrong with our angel.

Three days will go by and then she’ll take the tests. One week will go by and then we’ll get the results. One month will go by and we’ll hopefully be on our way to helping Emily. One lifetime will go by and we’ll pray that we’ve done the right thing with her as surely as we will with Chris and Sarah. In the meantime, I feel afraid of what life has in store for her. I never wanted to save the world. All I ever wanted was to save my children.

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About Jason McKinney

I'm a word slinging, werewolf loving, zombie wrangling, scare master author, husband and father of three. When I'm not writing, I'm blathering nonsense to the world or taking orders from the family. You have my thanks for stopping by and I hope you enjoy the madness and mayhem! Stay delicious, my living peeps!
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6 Responses to I know fear

  1. Wow, what a strong, wonderful person you are Jason. And, I’m sure that your wife is a strong, fighter too 🙂 Don’t forget that Emily is a part of you two! I’ve known several people who had difficulties with dyslexia when they were young. Partly due to the fact that it wasn’t diagnosed early on and teachers thought they were lazy and stupid. That’s a crime in itself. They went on to accomplish so much in their careers and families. I wish you the best possible outcome and I know that Emily will prevail through all of this. After all, I’m partial the name “Emily” because she’s the strong heroine in my series 🙂

    • Thank you so much, Jennifer. The coming appointment has been rattling in my mind for the past week. The closer it comes, the more worried I become. Like any parent I just want to make things better but like every parent Tab and I make do with what we have. The more I thought about it the more I realized that I should write about it.
      I’m in agreement about Dyslexia going undiagnosed. Teachers are the first line of defense outside of the home in realizing there’s a problem. Doctors are the ones that should give you options if worries do come up but as we’ve found out with two different ones, some simply glass over a parent’s concerns.
      Emily definitely lives up to your Ms. Stone! Out of the three children, she’s the most courageous and goes at everything with a take no guff kind of attitude. 🙂

  2. Tammy H says:

    It sounds to me like you are doing everything right and before it is to late. My sister had multiple learning and developmental disabilites and she was a teenager before she was given a real diagnosis. This was a huge struggle for our family because help earlier would have significantly changed her life from what it is now.

    I am not saying she has a bad life because she has a very good life, but she hated school and never finished because we could never find the support we needed in the little isolated community we lived in.

    A big pat on the back to you for taking on the system and hopefully winning in the end. Never give up when the doctors ignore you.

    • Thank you for reading and for commenting, Tammy. I’m sorry about your sister’s late diagnosis. More so that you couldn’t find the support to help her and your family. Kudos to you for being there for her. As long as she has a sister like you in her life then her life will continue to be pretty good indeed. 🙂
      The first time our doctor told us it would pass we believed her. But the second and third times just made us madder than hell. So much for doctors knowing best. lol
      On a plus note, your community may be isolated but I do admit that you are living my dream! City living has its advantages but wow does your farm looks beautiful!

  3. Melinda says:

    Jason don’t forget that you have resources at the state…in our old building 5th floor. Very odd that this should come up now as I just contacted special education in my school district to have Xavier tested for a speech impediment. Keep your head up, both of you are strong enough, smart enough, & determined enough to get her the support she needs!!

    • I’m a craptastic friend, Melinda! I’m nine days late replying and that is unexcusable. I’m sorry. I’d forgotten about the folks on the 5th floor. I’ve been meaning to visit them but things keep getting in the way. I should see them soon. They can help with getting information for Emily. I hope things work out for Xavier and his speech impediment. Emily’s not going away is what prompted our search into what could be done to help her. She had her eval last Thursday and she did great. I knew she would even though I was the one who was really nervous. lol

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