Friday, April 3, 2009

My autism biography, and thoughts about the photoshoot

My name is Michelle Leal. I am a 31 year old wife and mother. I have 3 beautiful middle child Isaiah is autistic.

I suspected something was wrong from the very beginning. Although Isaiah met all of his expected milestones he didn't communicate as a baby. He never cried when he was hungry...I fed him every 3 hours because it was time for him to eat...not because he was "asking" to be fed. He was so content. I knew I could never put him in daycare because he was so content I was afraid he would be ignored! That's when I became a stay at home mom.

Around age 2 we began to notice sensory issues. He started to have melt downs. If something was too loud he would scream and scream. We had to take him out of the house just for me to vacuum. He refused to wear shoes, this caused more meltdowns. He also had to stick to a strict routine, if things changed even the slightest during our day to day routine he couldn't handle it. Then there was the pica...something I thought only pregnant woman had! My son craved fuzz...he had a beautiful blanket his grandmother had knit for him, and he would sit and pick the fuzz off of it, and eat it. We also had to keep him fully dressed or he would pick the fuzz off his diapers. If all else failed he would pick it from the carpet fibers. We had no idea what was wrong with him. We expressed our concerns to our pediatrician, who only saw that he was meeting his developmental milestones, and that was sufficient for him.

At age 3 Isaiah began preschool. I began to get more and more worried. He couldn't tell me about his day the way his sister would when she was little. If I asked him how his day was he might reply "cookie" or " park". He seemed so oblivious to the world around him. I again expressed concerns to his Dr. although Isaiah had the appropriate amount of words for a 3 year old, I was concerned that he couldn't hold any type of conversation. His Dr. thought this might be due to the fact that Isaiah has severe wax build up in his ears. I still didn't buy it...I knew something was wrong with my son, I just didn't have a word for it, and what I thought I knew about autism, didn't describe my son.

At the age of 4, I was able to request an evaluation from the school system. I wanted a second opinion. I went in w/ the expectations of being told the same things my ped said, that my son was fine. When they called me in after they were done, I sat at the table with the three experts who had tested him, my son lay on the floor racing a car back and forth in front of his face. I smiled and waited for them to tell me how smart my boy was, and over paranoid I was being. The next thing I know they are telling me they see some delays in my child, delays that are common in children with autism. My eyes teared up, did she really just tell me that my child needs tested for autism??? WAIT NO, THAT'S NOT RIGHT, I'M AN OVER PARANOID MOTHER WHO'S CHILD IS FINE...MY DR. SAID SO, YOU WERE SUPPOSED TO AGREE SO I COULD FEEL BETTER ABOUT THE FACT THAT HE'S NEVER SHOWN ANY SIGNS OF PRETEND PLAY BUT INSTEAD ECHOS LINES FROM THOMAS THE TANK AS HE PLAYS WITH HIS TRAINS. WHY WEREN'T THEY SAYING THIS?????!!! SO WHAT IF HE HAS NEVER SLEPT THREW THE NIGHT IN THE ENTIRE 4 YEARS OF HIS LIFE, MAYBE HE'S JUST A LIGHT SLEEPER!!! HE CAN'T BE AUTISTIC HE CAN TALK, HE LOOKS ME IN THE EYES, HE HUGS ME!!! THIS CAN'T BE HAPPENING, SOMEONE WAKE ME UP, MAKE THIS NIGHTMARE GO AWAY!!!!!!

A piece of my heart broke that day, probably because I knew they were right. I had finally gotten the word I was searching for to describe what was wrong with my son...AUTISM.

I allowed my heart to break for a day or two, and then it was time to get busy. Time to figure out where we go from here. The first step for me was to get an official diagnosis to confirm the schools suspicions, after that we began therapies, and special ed preschool. By the end of the next year Isaiah had improved so much! He started to be able to answer the "wh" questions. People often had to be told he was autistic. He had lots of friends in the neighborhood, and was very high functioning. He was able to be mainstreamed in Kindergarten, we were so proud at how far he had come. And then came the shots...the dreaded kindergarten shots. Being a health care worker I didn't buy into the belief that shots have anything to do with autism...until he got the kindergarten shots, and our world came tumbling down.

Isaiah began to withdraw, he started stimming constantly and having over 20 meltdowns a day. His anxiety levels were threw the roof. People no longer were shocked to find out he had autism, and the neighborhood kids no longer wanted to play with him. Our world was spinning out of control. That's when we began looking into biomedical interventions. This world that I once thought was made up of naive parents willing to throw away all their money on the sheer hope of fixing the unfixable, began to be something worth trying. Did I think it would work? No, but I needed something to try because my world was falling apart, and the thought that there was no hope just wasn't acceptable anymore. After months of research, we decided to try it. So we found a DAN! Dr. and began the GF/CF diet. The first week on the diet, something shocking happened...Isaiah's psoriasis went away!!!! How could that be???? How could this hoax have fixed his psoriasis??? Now I was intrigued! We continued treating Isaiah with vitamins, diet, chiropractics and acupuncture (no needles just a painless laser), and the next thing I knew the 20 a day meltdowns stopped! OMG we were getting our life back!!! To this day we continue to treat Isaiah...he is 7 now. He has come so far since we began this journey, I am so thankful and finally hopeful to the future.

When I first heard about the Autism Mom/Warrior Mom photo shoot, I knew right away it was something I wanted to be involved in. The message of strength and courage and standing together for our kids was everything I felt I could represent. The day of the photo shoot, I had had about an hour sleep, all in the life of an autism mom! I was worried how could I represent our strength with bags under my eyes??? And then came the make-overs! I was so grateful that a salon had donated their services to us, and expected the very bare minimum...after all it was free! And then, I walked in to a world so unfamiliar...I sat down in a chair, to get my over-grown-not-cut-in-six-months hair done. The hairdresser asked would you like a cut today? WOW, you're REALLY going to cut my hair??? I thought you were just going to try and tame this wild mess so I look somewhat presentable for a picture!!! YES PLEASE CUT MY HAIR!! She sat me in a chair and PUT MY FEET UP!!! She massaged my scalp with oils, gently washed my that felt SO good! She set off to cut my hair, I had no idea what I wanted, as I had no idea I was getting my hair CUT! She talked with me for a while about my needs, for instance working in health care I needed enough length to be able to pull it back out of my face, but short enough that it's easy enough to manage...oh and how about a little bang to cover my wide forehead. And then she worked her magic. Next came the make-up...yes they donated their services in that also!!! I was REALLY excited about this because I had never had my make-up professionally done, and lately haven't been wearing makeup because I just feel like I didn't know what to do with it anymore, and a bad makeup job is worse than no makeup! Again the make-up artist talked to me, discussed what I like, problems with my skin etc. She even went as so far as to give me samples to help me with my dry skin problem! The pampering didn't end there, we also go manicures. I'm not talking paint your nails and be done, I'm talking hand massages and all!!! I've never felt so pampered and special in my life. It was truly a once in a life time experience WAY up there on the top of the "greatest days in my life" list. The photo shoot was a blast, it was so nice to be around other moms who "get it". For the very first time, since Isaiah got his diagnosis, I finally felt like I fit in with other moms, it was a truly remarkable feeling. It was a very special day in my life, one I'll never forget, one I'll always be grateful for, one I'm so excited to share with the world!


Bridgett said...

What a great entry! I was thrilled to read your story as I didn't know a lot of the background.

And I'm so jealous of all the pampering. ;)


Christina said...

Michelle that was a beautiful post, I was in tears. I really admire you!

minivan driving soccermom said...

Thanks Bridgett and Christina :)

kristi said...

Thanks for sharing this!!! Your story sounds a lot like many people said "he is fine, he is just shy"...ugh...if I had only known!