Apr 9, 2011

Our Son Kristofer

Autism affects each family differently. For us it's just a way of life. I expect the same things from Kristofer as I do the others. I make only small exceptions or make small modifications for him but when it comes to behavior he has to tote the line so to speak. I understand that the spectrum is so wide that it affects each individual differently. Many autistic children and adults are not able to speak while some with the use of computers are able to speak. Some have other issues they contend with such a aggression, seizures, over the top sensory disorder issues and other things.
Our son is able to communicate just like any other person...thankfully! He is a remarkable child, loves to build with legos, robots and dinosaurs are his favorite things and he is just now getting into drawing and art. He for all purposes seems like a typical child who is a little shy. But if you sped more time with him you will notice the pacing, rocking, hand flapping (occasionally), lack of eye contacted (almost immediately), does not initiate play with other children (again occasionally he will) and other typical autistic characteristics. We are blessed that he is not aggressive. Some autistic children are and it is usually not out of meanness but it is how they respond to certain stimuli or situations.
I share these things because there is a popular organization that would like for people to fear, pity and think of autistic children/adults as less than human. That organization is Autism Speaks and with good reason Autism Speaks does NOT SPEAK for us! Here are some reasons - from Autistic Self-Advocacy Network that my friend Angela DeRossett shared in a note on Facebook, Angela is also the writer of Homeschooling the Chaotic Family:

"1. Autism Speaks talks about us without us. Not a single Autistic person is on Autism Speaks' Board of Directors or in their leadership. Autism Speaks is one of an increasingly few number of major disability advocacy organizations that refuse to include any individual with the disability they purport to serve on their board of directors or at any point in their leadership and decision-making processes. In large part due to Autism Speaks’ public relations strategy of presenting Autistic people as silent burdens on society rather than human beings with thoughts, feelings and opinions.

2. They use fear and stigma to try and raise money off the backs of our people. Autism Speaks uses damaging and offensive fund raising tactics which rely on fear, stereotypes and devaluing the lives of people on the autism spectrum. Autism Speaks' advertising claims that Autistic people are stolen from our own bodies. Its television Public Service Announcements compare having a child on the autism spectrum to having a child caught in a fatal car accident or struck by lightning. In fact, the idea of autism as a fate worse than death is a frequent theme in their fund raising and awareness efforts, going back to their “Autism Every Day” film in 2005. Indeed, throughout Autism Speaks’ fund raising is a consistent and unfortunate theme of fear, pity and prejudice, presenting Autistic adults and children not as full human beings but as burdens on society that must be eliminated as soon as possible.

3. Very little money donated to Autism Speaks goes toward helping Autistic people and families: According to their 2008 annual report, only 4% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services. Given the huge sums of money Autism Speaks raises from local communities as compared to the minuscule sums it gives back, it is not an exaggeration to say that Autism Speaks is a tremendous drain on the ability of communities to fund autism service-provision and education initiatives Furthermore, while the bulk of Autism Speaks’ budget (65%) goes toward genetic and biomedical research, only a small minority of Autism Speaks’ research budget goes towards research oriented around improving services, supports, treatments and educational methodologies, with most funding going towards basic research oriented around causation and genetic research, including the prospect of prenatal testing. Although Autism Speaks has not prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world, with annual salaries as high as $600,000 a year."

Now here's the deal...first off my son is fully a human with feelings that get hurt very easily. Thankfully he doesn't hold a grudge for long and easily forgives but he doesn't forget who hurts him. He was not stolen from us or his own body! He does not have a missing link either. My son, our son, is perfectly whole! He learns differently, sees things differently, does things differently...WHAT IS WRONG WITH THAT??? He is NOT retarded or have brain damage! He doesn't need to be cured! I love him the way he is. Do I wish the things he struggles with weren't so difficult for him? YES! But I would say the same thing about my other three children who have their own struggles. We all have things we struggle with! Even as adults if we would just fess up to them!
Will I say I wish he was a typical child or what society says is a "normal" child? NO! If I wished away autism out of his life he would not be the child I love. God makes all things perfect!

"You alone created my inner being. You knitted me together inside my mother. I will give thanks to you because I have been so amazingly and miraculously made. Your works are miraculous, and my soul is fully aware of this. My bones were not hidden from you when I was being made in secret, when I was being skillfully woven in an underground workshop. Your eyes saw me when I was only a fetus. Every day of my life was recorded in your book before one of them had taken place." (Psa 139:13 - 16, GW)

I believe our son was created by God and was NOT an accident what so ever! I am not looking for a cure what I would like to see is more research done on therapies that help children and adults to reach their full potential. I can not say that I believe that immunizations caused his autism. Do I feel that there may be a link, it's possible but I really do not know nor at this time do I care. Ok some of you are going to ask why I do not care about this...honestly I don't have time to. Oh I wonder but there is NOTHING I can do about it now. I have 15 nieces and nephews and 4 children of my own and out of those 19 children only 1 is autistic! They all had their immunizations at the recommended times and yet only our son Kristofer is autistic. So are the immunizations the reason he is autistic...I don't think so.
I do not find autism as a curse. Yes it has changed our lives for the BETTER! Yes there are times it is stressful especially when he was under 5 and we were still struggling to find out what was the issues. Which is another post all in itself and you can read about it here and here. I would never change Kristofer in any way I would however like to change how people think of autism and how they think about my son!

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