Advocating & Autism

This week's Phenomenal Mom is Amber, mom of 3 amazing kiddos.  We met years ago through a military wives/girlfriends support group (I've dated a couple of military guys...) on AOL.  I still remember when she shared her news about Ethan with us, way back when.  Here's her story...
 
Amber & baby Ethan
It is so ironic. You spend nine months saying "I cant wait to meet him/her" and get anxious at the very thought of seeing their perfect little face. Then when they arrive you want nothing more than to put them right back in your snug little tummy. At least there you could control what happened to them...to a point. Children have no idea how fast they can send a mother into a full blown panic attack, and sometimes over something simple like a cut on the knee! "I can't see where the blood is coming from, there's so much of it!" A mothers biggest fear is losing their child(ren) whether it be to death or some incurable disease or disorder that they have no control over. All we want is an easy fix, all of the time. Like simply wiping a child's tears away and kissing them on their "owies." On July 07, 2005 I found out my beautiful little boy with an enormous heart had a disorder that I could not just kiss away and I had no control over it. Let me just say right now that nothing prepares you for that moment, no matter how prepared you are. You nod your head and listen, although...you aren't really listening. You have a blank stare and can hear them, but nothing is registering. I shook the panels hands and calmly drove home, not a single thought raced through my mind. Then I got home and walked him inside, where he ran to play upstairs. I sat in our computer chair across from his father and still apparently had the blank stare written all over my face. And then I said something I never in a million years expected to say..."He was diagnosed with Autism." The flood gates opened and I broke down and cried like crazy while his father remained calm. It took me a few minutes to gain my composure, but when I did it was over. And that is the last time I ever cried about his diagnosis. Why? Because there was no time for pity parties. Whatever had control over my son was obviously no monster because he is absolutely amazing. My job as his mother was to help him survive in this hectic world that had so many expectations of him...and that is exactly what I have been doing for the last 7 years.
Shining his light
Floor-Time, an experiment done on children with Autism to help them learn how to parallel play. Speech therapy, weekly. Preschool in a special setting for children with Autism, 8 hours a day, which included Occupational Therapy and more Speech therapy. Diets, both diary free and GFCF. Doctors appointment after doctors appointment, testing for other potential disorders or reasons behind their Autism. Support Groups and Experimental Studies. The list goes on and on. Looking back on all of the things I did the first four years of his diagnosis, I am amazed at how much I accomplished, and a lot of it was done while I was a single mother. Yes, his father and I divorced. Divorce rates are extremely high in the Autism community, but honestly it only had about a 25% affect on my marriage and the other was extra issues. His father was military and deployed very, very often. It is hard to understand your child when you are gone as often as my sons father was, much less understand a child with Autism. I often felt as if he did not "get it" and resented him a lot for never being there for appointments and therapies. This scenario is so very common in the Autism community, and for some families, much worse off than what I experienced. Each marriage has to have 110% support behind it. In a special needs family, times that by like 10!

I could never imagine waking up one morning and having my two typical developing children, and that was it. My daughter had a full blown vocabulary by the time she was 2-1/2. Her first two regular words were said at 4 months old, and with meaning. My son with Autism talked in 2-3 word sentences by the time he was 2, but then he drifted away and didnt start speaking in sentences again until he was 7-1/2 years old. At 9 years old, he has less of an understood vocabulary than my 3-1/2 year old daughter. Each morning when I wake up I dress my son with Autism, I brush his teeth, and ask him simple sentences to receive simple answers. Meanwhile, my daughter dresses herself, brushes her own teeth, and asks me questions even I sometimes don't know the answers to, haha. When I go out in public, I have the constant fear that he will disappear...because he has several times. He will see something that interests him and sneak off, or he will try to imitate something he seen in a movie and I will have no idea where he went. I have extra locks and alarms on my doors so he will not just walk out one day and wander off. My typical developing children don't really do these things! Do I ever hate that raising my son with Autism is more difficult than mothers who raise kids that are typical developing? No. Not ever. If anything, I love my life even more! I never take anything for granted. I don't mean this lightly either. I likely annoy people with my constant gloating over what would seem like small accomplishments to others. Every accomplishment is mountain in my eyes because not everybody gets to witness such things.
Ethan Scott
I once had a best friend tell me that only I would manage to turn everything around into a positive life lesson ten minutes after I complain about it. I could never be the kind of person that sits around and sulks about my child's Autism diagnosis, no matter how frustrating my day has been. Even with three children, you rarely hear me complain. I have two toddlers and a 9 year old with Autism whom is more difficult in many situations than you could ever imagine. But I wouldn't have it any other way. I am my children's biggest advocate. If I'm not, who will be?

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