Autism Awareness Month 4/16 - Maria - Fan

Today's post is from a fan... perhaps a super-fan. I started this page on April 24th, 2012. It originally had another name that I changed in favor of "Find My Eyes". The change was in September of 2012 You can read about that here. I had to re-build my audience and there were several people that came with me to the new site. From the very start, however, there was always one woman that seemingly "liked" everything I did. Someone I had never met, spoken to, or reached out to. Her profile was set to private, so I knew little information whatsoever... I just knew, for some reason, she dug my stuff. 

When I put out a call for submissions, I personally called her out. I said to her "what's your story"? 

And I got it. And it's amazing.

When I asked Maria to give me a sentence or two to describe herself, she sent me back this:

As far as how you can describe me, well I go back to my dad, who lost his battle to Parkinson’s on December 9, 2012 and the jewels he always told me as I was growing up. The first one, which is why advocate as hard as I can for my children is: “a good education is something that no one can ever take away from you. They can take away everything else, but the good education will always stay with you.”

And the second one and the one that carries me through every day is: “You cannot control the cards that life deals you, but you can control how you play the cards.”

And I couldn't have done better. 

This post is why I love doing this project. I have never met Maria, and, realistically, never will. Yet she is one of my best friends.

Also, as a fan of the site, she requested I put a song title at the beginning of her post. I humbly oblige.

Ladies and Gentlemen, I present to you my super-fan and friend, Maria...

I Won't Back Down

TOM PETTY

FROM THE ALBUM "GREATEST HITS"

BUY

As parents of special needs kids, I think that we have all heard different compliments about our abilities of being able to parent our children, how strong we are, etc. I am usually dismissive with these types of compliments because, after all they are my children and no matter what, they come first. But on April 2, on Autism Awareness Day, my psychiatrist, Dr. G. said to me, “I admire you. With everything that you have been through, you have found a way to persevere, to smile, to advocate and to fight for your children. You are one in a million.” Being the person that I am, I replied with one of my snarky comments, “Those little pills that you prescribe to me that help me sleep at night” (No sleep – very cranky and short fused mom, well rested mom, I can take on the world!) He said: “No seriously, how do you do it?” and I said, “If I don’t, who will? It helps that I was raised by loving parents that always put their children first.”

As I drove home, I thought about what he said. Here is a professional, a man respected in his field telling me, that he “admires me”. Dr. G is one of the best, if not the best, Child, Adolescent, and Adult Psychiatrist in this area. I started seeing Dr. G over eight years ago for of one my children who is a twin, who has PDD-NOS with several co-morbid issues. But, in the last four years, Dr. G has become my rock, in some ways my anchor and my reality check because in January 2009, I became a widow. Again. My first husband died in 1987 when my oldest and only daughter was 11 weeks old. I remarried in April 1990 and had four more children, all boys. My oldest boy was born in July 1996, the twins, in October 1999 and the baby in May 2001. So here I was, a fifty year old woman, whose oldest daughter was 21 and living on her own, “AB” was 12 and in 7^th grade, the twins were nine and in 3^rd grade and the caboose was seven and in 2^nd grade. This wonderful psychiatrist moved patients the following day and spent over an hour talking with the boys and letting them feel their pain, consoling and helping them cope. One week to the day that my husband died, I was back in his office because Twin B, with PDD-NOS was going through one of those horrendous regression stages that our kids seem to go through, and all the private test results were back. It was not easy to hear the results of the tests, to hear that the gains he had made thru early intervention, private therapy and private tutoring had diminished. No expense had been spared to give him the therapy he needed. What insurance did not cover, we paid for. I made a choice that day. I would not go back to work. I had worked side by side, with my late husband for the prior eight years. The boys had lost their father; they would not be without their mother too. The three younger boys had IEP’s, why was Twin B regressing? How was the school district failing him? We are in one of the best districts in the state. I knew that it was time to put the “mom hat” on full time again.

And I have not looked back since, but I have learned a lot. More than a college education ever did, more than working ever did. We went economically from the “privileged 1%” to an average middle class family. My children have learned that there is a difference between a “want” and a “need”. There are values in life that only I can show them through example. Even though we have suffered losses, we can still be happy. Even though we may not live in a mansion anymore, we have a home in the same school district, a roof over our head and food on the table. That by being committed to their school work, they can achieve. AB is now a junior in High School on the highest honor roll (Calculus, really? Physics, really?). Twin A has been off an IEP for over a year now and is a successful, high performing 7^th grader meeting or exceeding all common core standards. Just got thru the caboose’s IEP meeting, and he was describe as “a child who knows how to advocate for himself when he needs help, a class leader and performing at or above common core standards”. I have also shown them that when Twin B is having a bad day, we can empathize with his struggles, but it does not mean we give in. We re-direct and advocate when he can’t. It is fun to have family game night, not only does it build up Twin B’s social skills, we laugh and joke as we go. We know that Twin B will keep us in the loop as far as any fires or ambulances that may drive by or any crime that may happen in our town. We see the irony in stuff, laugh at gross jokes, and we listen to each other.  But most of all, we have hope. Hope for a better future. They need to see me, as a happy and strong person. A person who is proud of each one of her children for whom they are, not what I would what them to be. They know they can depend on me to be by their side, no matter what they do; the good, the bad and the ugly. And as the song says “Hey baby, there is no easy way out”. 

Ed. Note - I am honored to know you, Maria.