Monday, February 22, 2010

Change of direction.

I am sorry that I have not written in so long. Life has it's turns doesn't it. I am off topic a little this time. But I had to write this at this point. I ask you, the reader to give me some leeway. I have had trouble lately and I needed to get some things off my chest.Recently a witch hunt has made my son a target of hate. My son is severely autistic. He is not capable of understanding the things that are being said or why someone would say them. I think I need to tell you his story so you better understand why I feel the way I do about all of this matter.

Evan was born on August 15,1994.He was a perfect baby and I could not stop staring at his angel baby face. My husband and I had tried for a year to have a second child and it seemed that every woman I knew in my small town was popping kids out left and right.So when I finally got pregnant I was so happy!I had given up at a point and gone back on the pill then got pregnant.I say the plan of the universe was at work here and my plan made no difference. You have a baby when the big guy up stairs says so and that is how it goes. So I saw my son as a gift! He was a dream baby. So cute and healthy. He progressed well, doing all the developmental milestones ahead of time. I has so proud of him. I remember the day so clearly that shook my world upside down. I took him to get his shots at 18 months old. That night he had a seizure.I rushed him to the hospital. It lasted for so long and they did nothing but watch and give him a Tylenol suppository.He had a raging fever. we stayed till morning at the E.R. The next day I took him back to his pediatrician.Who told me he would be fine and that it was just a reaction that can happen to some kids. I took my baby home and he slept, sick and exhausted, he slept. I checked on him every few seconds crazy with worry. The fever want away but my baby seemed like he had something else wrong. He just stayed curled in a ball even if you held him. I tried everything I could he did not respond to me. I rushed him back to his doctor. The doctor said that I was overreacting and that he would be fine. I asked him to really look at my son and tell me that he was fine. Then I asked for my son's medical records. I was taking him to someone else. I called my mother in law and she made me an emergency appointment on the reservation. My son is half Mohawk. We drove as fast as we could my baby still in a strange ball in his car seat. The new doc looked him over and took me to a smaller room and said that she thought my son may have brain damage. He appeared to be deaf, blind and catatonic. She made him an appointment to go to Burlington VT. The next day to see a new doctor. I cried and lost my mind for the entire night. He was so little! Would he die? What next? Why him? We were off the next morning to Vermont. We sat in a room with other parents who would not look at us. I cried the whole time. The new doctor looked my baby over and said he needed to do some test and could we bring him back the next day. He arranged for us to stay at a Ronald McDonald House that night. The next day the test started. I will not even tell you how hard that was!We spent the night again and the third day the doctor sat with us and said that my son was not blind, not deaf, but what was wrong was nerological! He made an appointment for us in Boston at the children's hospital.
So now we were off to Boston.I did all I could to maintain.Boston was even more test. Too many to count! Two days of test! The third day we still had no answers. They needed time for results to come in. So we went to the aquarium. I tried to pretend it was normal. People stared at us! At my baby! We did our best.Then the big day..... I held my breath until I thought I would pass out.When we entered the office a woman came over and said that she was there to hold my son so that we could focus on what the doctor said with out distraction.The doctor stepped out of his door and called us in. I could see my baby through the glass wall with this woman holding him wrapped up in a blanket. The doctor went into the test results. He told us our son was catatonic and had something called autism and it was a severe form. He gave us time to digest the news. Quiet was like hell ripping my soul to small fragments. I cleared head. What is autism and how can we help him? What is the treatment? The doctor shook his head no. He said that it is not treatable that my son would be exactly how he was right now and that will be his life. He will always be catatonic and it would just get harder to care for him as he got older. He said the woman who was holding my son was from a children's home and they could take him in if that is what we wanted. We could try for more children and visit him on holidays and birthdays.

I freaked out! I stood up and went out to get my son. The woman introduced herself. I said, "may I have my baby please." She tried to talk to me about the facility he worked for. I said again, "give me my son." She kept talking. I said, " If you do not give me my son we are going to have a serious fucking problem here, trust me!"
She handed me my son. I looked at the doctor and the woman for a long time as they asked me to calm down. I made a promise to my child and to them on that day. I said that I would be back some day and that they would eat there words when my son walked in to there offices and said hello.He will walk, he will run! He will talk! He will sing! He will do all the things that they said he would not do! They were wrong!
I took my son home. I kissed him goodnight. I kissed my older boy hello and goodnight. Then as my house slept I had a true mental breakdown. I do not wish to explain it. Somethings I need to keep to myself. I can say that I know true despair and helplessness.I prayed, I cried,I begged!
The next day I got my shit together. I made the calls to the family and friends I needed to. Then I got to work! I took the boys to the library. I read all I could on autism. I found a way of teaching my son. I got on the computer and printed out pages of information. We went home and work began!I had read a book about ABA,I will spare ya all the technical stuff.The basic is that you can teach autistic children with repetition.So I wrote up a lesson plan. First I knew he had to regain what he had lost.His ability to walk, feed himself and make eye contact! I gave him weeks of massage. Legs and body work that I read about. Then I tied him to my body with bandannas. held his hands and off we went. Miles and miles around the house. My older son and I played hid and seek while I walked my younger boy around. My baby screamed the whole time!My husband could not take it he thought I was being unrealistic. I kept going! I still think of the day when he took his first step I fell to the floor and hugged his so hard I thought I hurt him. He walked!!! We did it!Nothing for him was easy!I was waring thin. I found out about a program that would come to your home to help. They were called Early Intervention. I called. They came. They did not know ADA. I showed them. I gave them all the books I had. They helped!My son began to utter words. Then he spoke. Time passed. He can now run and sing and ask for his basic needs! He is innocent and kind!We have put in a long road he and I. Too much to tell about here. I can say he will never lie, cheat or steal. He is not capable of those things.He will need help his entire life. He does not know fear and trust everyone. He has no concept that people can hurt him. He is now 15 and I work everyday to ensure he will be a productive citizen. He will have a job and be a part of his community. I did call that doctor and my son said."Hello I am Evan and I run and sing!" I sent that doctor his photo and documentation of his progress. Then I told that doctor he was wrong!He sold my son short. If put in a home my son would have stayed in a catatonic state! He forgot that love can change the world! That doctor retired the next week and sent me a letter that I kept until a few years ago. Telling me that he had come to know that he was wrong and I did the right thing for my son.He passed away one year later.

My child is not like other children. He has so much still to overcome. I will give all I have and all that I am to him. He has given me more then I could ever pay him back for.I used to pray that he would be happy. I did not see that he was and is. He is my gift! I am blessed because I was chosen to be his mother.He has never been violent or harmed others, he would not understand violence in any form. He is an innocent. Still learning to tie his shoes and not to hug strangers hello.Just because he is not like other children does not mean that he is bad. It is just the opposite in fact. Other children,lie,manipulate, swear, bully and I could go on and on and on! My son is incapable of those things! So educate your self please autism is not a mental illness! It is a developmental disability! Before you spit venom at someone know your facts! Or it will be you who is the danger to the rest of us. Learn, care grow and change!

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