How do you spell relief? And, I don't mean the plop plop fizz fizz kind! It has been just over a year since Madeleine's Autism Spectrum diagnosis and I finally have relief! Why, tell me does a child fall through the cracks for 8 years? I'm not a complacent parent but I couldn't get anybody to "see it"! Does that mean it was me making it up? Heck no! I know there are those people, many of those, that think your stupid if you diagnosis yourself or one of your loved ones. Believe me I have family member's that make fun of me and call me a hypochondriac! And, yep your right, it feels just dandy when they do!
Am I? Heck no! If you read any information at all about the Autism Spectrum you would read that it says if you suspect your child may have it ask your doctor. Well, I followed those directions and she said there was no way! Obviously (to me now) is that there just wasn't enough information or research on it 9 years ago but 4 years ago there was. I found it! How is it all doctors didn't know about it or at least all pediatricians? How could they over look my concern just because she spoke and spoke well. As time passed, I had already begun implementing the therapies I was finding on the internet. By the time she was diagnosed she was able to look everyone and anyone in the eye's no thanks to any professionals! It was all me!
I trained her to do that, I trained her on what to do when you are mad instead of self mutilation. Yes, she was 5 and self mutilating when she was angry. It was terrifying to be me. No one believed me not even my husband. In his defense, he knew there was something wrong with her just not what. Ironically, he pushed me to have Abigail checked before I even suspected Maddie. I spent the next 5 years trying to not convince but get anyone to open their eyes and see what I could clearly see. I was even able to narrow it down to two different disorders the question was which one. It took moving out to the middle of no where Nebraska to stumble across an Autism Center and they are who examined, tested and diagnosed her but we were there almost 1 1/2 yrs before we found that help. It was through the twins pediatrician.
So why did I jaunt down this windy path today? What triggered my thought process? She has reached 7-8 of her current OT goals since Feb of this year. It is amazing! She wears all clothes and looks like a girl and "trendy"! She can ride her bike without training wheels! She goes to an Autism school in the area! Which BTW, most of my family didn't even believe her diagnosis until after the city schools diagnosed her here and she was accepted into the autism school. Best news, she was given the $20,000 autism grant to pay for the school. Which, unfortunately costs more than that.
I am so happy and proud of my girl! We will not leave Cleveland until Madeleine doesn't need Cleveland anymore. Looks like I better go unpack the rest of those boxes I think we are gonna be here a while.
Namaste,
Kim
People call me a hypochondriac and laugh at me too. It's annoying as shit since 99% of the time I'm right! Case in point my last baby. He was born with a Congenital Heart Defect that went undiagnosed. I noticed he was breathing fast and googled. I determined that he either had RSV or a CHD. He had the CHD! It's so hard when you face a challenge with your kid and people won't take you seriously! Grr Argh!
ReplyDeleteI know! I am usually right too! Call me crazy but maybe I should have the Dr. before my name since I'm doing all the work! That had to have been hard for you, CHD is scary stuff! I've spent the better part of 6 years asking the dr's about my 6 yr old's gas problem....6 yrs later she has Fructose Intolerance that was un-diagnosed?! Case in Point! People wonder why my Fibromyalgia is always at it's worst!! It's because of all the frustration and worry over the years from THEM NOT believing me! Thanks for taking the time to read my stuff! Namaste
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