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Wednesday, November 23, 2011

Lot of Wedensday Child 11-23

To day I have a special guess who knows first hand what life is with a special need child. please welcome Ester Belle.

Tomorrow many of us are preparing for a holiday that should be centered around being grateful. In these uncertain times, many of us are challenged by difficult circumstances, probably none any more or less difficult than my family. I am a recent widow, home lost to foreclosure, unemployed due to disability, living with a developmentally handicapped son. But GRATITUDE will still be the main topic around our table, and for the last 26 Thanksgivings, no matter where we are in life the first thing I am THANKFUL for is the Blessing of having our lives touched by autism. Yes, I honestly feel that my son was blessed by being born with autism.

When I first became aware of autism the statistics being touted were that one in ten thousand children would be affected by autism. The research was minimal, and much of it still blamed the condition on bad mothering. When I first became aware of autism, most educators had never heard of it. Most teachers had never met a student with autism, because students with autism weren't in school. When I first became aware of autism, parents were still being told that their children would never speak, would never interact in any meaningful way with other people and would be better off institutionalized. When I first became aware of autism, my son was 18 months old.

I started questioning some of his behaviors with his pediatrician. Those questions would eventually lead us through children's hospitals, university hospitals, as well as clinical classrooms attempting to get a diagnosis. Now, a correct diagnosis when it comes to special needs children is so important. It is the only way to get your child the proper services from the school district. Like other families then and now, we went through some wrong diagnosis before we got where we needed to be.

Our pediatrician sent us to a clinic at the local hospital, the very hospital where my son came into this world. This hospital diagnosed my son as severely mentally retarded. Now, I may have just been the mom, but I knew this wasn't even close to the truth. So, off I went to the Children's Hospital in Los Angeles where my son was diagnosed as having a communication disorder, and for 3 pages of the 6 page diagnosis, a bad mom. Interestingly one of the criticisms of the 'experts' at this hospital was that we did not have a TV. It was written that I talked to my child too much. Honest, that's what they wrote. They also wrote that I was unrealistic in my expectations. I expected my son to be able to overcome whatever challenge was thrown at us, and to succeed. How dare I believe in my son!

This diagnosis of a 'communication disorder' was at least good enough to get us a placement in an early intervention program. My son, started school at 3 years old. He has always loved school and learning. We have always been blessed with good teachers who cared about their students. The preschool program he was placed in had 10 students per classroom. I spent as much time in the classroom as he did. Parents were encouraged to be there and work with the teachers. As I looked around most days, I was the only parent there. I was stunned to learn, in overhearing a conversation between two teachers that in my son’s classroom all of the other children were there because of problems created by the mothers drug use during pregnancy. What a sad statistic, having to do as much as where we were living at the time as anything else.
Eventually, I could feel Spirit telling me it was time to move. Raising a special needs child as a single mom was going to be easier in the Midwest. So, we moved. The first house we lived in was in a school district that chose to not deal with my sons challenges. By this time I was certain that my son was autistic, and I let school district administrators know this. A parent attempting to educate and autistic child was a new thing, and it took me a while to find the right school district. Eventually we did, and we moved again. My son registered in kindergarten, I took him to the local hospitals, and finally we had a diagnosis of autism. It took four years of doctors and educators to diagnose my son. Autism at that time was a relatively unknown disorder. We were blessed. We ended up living in an excellent school district that provided excellent programs and teachers for him. We are aware that other parents are still fighting long and hard for their children. Our journey through school was challenging, but in our school district he was able to thrive. My son was the first autistic student in the district. He would soon be followed by more autistic students as statistics changed. One in ten thousand affected by autism has become one in 110.

I think the first time I realized what a challenge my son was going to be was the day(2 years old) we took him down off the roof...then there was the day he went shopping(4 years old), moving a 250 pound sofa sleeper, unlocking 3 locks to get out the front door. Running down the street, entering the grocery store , grabbing a cart, and methodically heading up and down the aisles choosing items. The shopkeepers recognized him; we were regular shoppers in our neighborhood grocery store. The manager said they assumed I would soon follow, so they let him shop. That was the day I put bells on the door.
Or was it the day when he was 5 years old and he slipped out--he had an uncanny knack for taking advantage of my bladder--of my auntie's front door, ran down to the intersection of a one lane street and a 4 lane thoroughfare. STOPPED traffic with his hand upraised, crossed the thoroughfare, and calmly entered the convenience store, where kind people called the police, and bought him an ice cream while waiting for the police and mom to show up! The police and I got there about the same time.

Perhaps it was the day in third grade when they called to inform me that my son had hacked into the school computer system and locked everyone else out! They wanted me to help convince him to tell the IT guys what he had done. When I asked him to tell the IT guy what he did he responded "He is the computer guy he should be able to tell." I said "Well, he can't, you have to tell him." Then I heard a sigh and a few keystrokes and my son said, "There I changed it back." We discovered that he had stolen his teacher’s password, not by watching, but by hearing her type it in. He could tell the sound each key of the keyboard made. So, my son had to go into the hall with the classroom door closed whenever his teacher wanted to log in.

Raising an autistic child is not easy, but I look around and see that raising any child these days takes a lot of hard work. My son is a young man now, the most amazing young man I have ever met. He has astounded the experts the experts and educators. He was recognized as a Presidential Scholar under 2 different Presidents. He was the first student to be in the Special Needs program and the Gifted and Talented Program at the same time. Yes, he still lives at home-but so do a lot of people his age in this economy!! We work every day on the skills he will need to become an independent person. We firmly believe he will.
Until then, I count autism as a blessing. I continue to learn so much every day while preparing my son for the world. At my infant sons christening I asked Most High to help me make sure that my son would experience the magic of childhood. The answer was the gift of autism. The most amazing blend of special needs, genius, and faith that is my son. My son believes that God will always provide, and that whenever we meet a challenge, Mom can find the answer. My son trusts me to help him learn to navigate a world he has trouble understanding. I am humbled by his trust and faith in me, humbled by Creator trusting me to raise this special child. I am truly thankful and I am truly blessed.

  Thank you Ester Belle.

Autism is not cause by drugs, alcohol, or being a bad person.  They are still in the dark as to why and how as are those who make the comments of blame.

Thank you for coming by and god bless


Alpana Jaiswal said...

thank you for sharing this with us,I believe that each child is special...and is a gift of God...I do pray for you and your family to be happy always.

JANU said...

It tells a lot about the parents of a special child. The amount of patience, love and time you invest for your child is immeasurable, it surpasses that of a parent of a "normal" child.
Blessings to your son. Thanks for sharing.

Bongo said...

Makes you take another look around to remember what you're grateful for..thank you for sharing this...As always....XOXOXOX

EstherBelle said...

Thank you Roy for your generosity in asking me to share part of our story! Ours is an ongoing challenge, and I am always grateful to be able to share.

The Nurse Mommy said...

like everything you write EB, it was beautiful! =) Your love for him shines through!

Jan said...

Your love for your child does shine through like a beacon shining on your faith and trust. Your joy is beautiful and what a road you have been on. It is so wonderful to hear someone be excited for the life of their child, even with the difficulties. Prayers for you both.

Darlene 'Dee' Bishop said...

So many excellent insights, Esther Belle! Thank you for sharing (and you, Roy, for allowing her to). I have known families with autistic children and it AMAZES me at what they can do when so many look on them as "different" or less than "normal." I think they are truly special people and that it takes someone truly special to care for them. :o)

(Following from Get Your Blog Followers FB group. Hope you'll stop by for tips on saving money and living a more frugal lifestyle among other topics!)

Amy said...

this is such an inspirational and amazing story! WOW! I agree, your love for your Son shines through.

Thank you for sharing.

Tameka said...

Thanks for this touching story. May God rain blessings down on you and your family this year and each one that passes!

Rimly said...

I was touched reading this article. Yes you are indeed blesses and god bless you. A very Happy Thanksgiving to you and your loved ones

sulekkha said...

Parents of special children have more patience and are capable of so much love that it humbles me. Thank you for sharing this touching and sensitive story with us and god bless you and your family.

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