I recently spoke before the Missouri Blue Ribbon Autism Panel. I encourage everyone to contact their legislators to make real changes for our children.
I am the mother of three beautiful children. My twin daughters came into my life through adoption. My son came into my life through birth. My children are precious and have brought me more joy than I could ever imagine.
My son is 14 years old. He has been diagnosed with Early Infantile Autism and some of its co morbid conditions. He is honest, fair, and intelligent. He also will probably never leave home because he didn't receive the early intervention that he needed to become successful.
Before my children were born I was working for a Fortune 500 company and was making a very good wage. I am now working for a grocery store making $7.50 per hour. I am unable to make more than that for several reasons. They all have to do with my son's disability.
I co-founded the Lee's Summit Autism Support Group because I was frustrated and didn't know where to go for help. I met another mother on a website for parents of children with disabilities. We quickly became support for each other and spoke on the telephone frequently. We started our group because we knew that there had to be other families out there that were suffering the same way and needed the same support that we were looking for. I will not begin to describe the trials and tribulations that we have encountered trying to get our support group going, but I can proudly tell you that through persistence and sheer will we have a wonderful group of parents now.
This leads to my issue with employment. I can not give up my support group and it takes a huge amount of my time. I am willing to accept that challenge and I make the sacrifices. I can do a lot of the work when my children are in bed.
My son is in high school and because there is such a lack of knowledge about autism, he misses 30 days of school each year. This is because his IEP isn't being implemented, or his teachers don't understand that children with autism need to chew and he is reprimanded for chewing, or he shuts down and his teacher writes him up. This all leads to him becoming physically ill and having to be picked up from school.
Then there are the appointments with doctors to try and find the right medication to address some of his issues. This is no small task and requires diligence and time. I can't work for a company that expects me to be at work every day. I need to be available during school hours. I can only work weekends, evenings, and nights.
This has lead to me making half of what I made over 20 years ago and missing out on a lot of family time with husband and children. I am fortunate. My husband makes a good living and I can afford to make this sacrifice.
For years I was able to stay home, but with the present economy, I have been forced back to work. Some families can not. Some families are made up of single mothers that are in fear of losing their jobs when they are called to the school to pick up their children.
I stand before you a mother that felt she knew everything that she needed to know to raise children. The day that my son was born, that all changed. I have become an advocate and a lobbyist. Not because I enjoy it or even want to do it. My son's life depends on it.
This affects every part of my family. My daughters feel that I love my son more than I love them because he is biological and they are adopted. They think that all of the time that I spend fighting for my son's life is about favoritism. They are losing the right to have their Mommy be what she should be. They had to give up part of their youth because I have to fight for my son. This is something that I can't take back or do over. Children shouldn't have to pay the price for the inadequacies of society.
I am holding two pictures of my son. The one on the left is how the world sees my son. The one on the right is how I see him. Thank you for your time.
