Wednesday, October 17, 2012

It's Been a Long Time. A VERY Personal Blog.



I’m emotional today, well almost everyday lately.  So, I’ve decided to write.  That’s what I do when I’m stressed. I'm going back to trying to blog again.  So, here's what is going on.  This is not an upbeat blog...it's a serious one but a necessary one.  



Many of you don’t know a lot about me.  Many of you aren’t my super close friends, and actually, I haven’t really talked to my really close friends about it except one.  My son Scott, my 4 year old, is eventually being tested (hopefully soon) for autism.  We are almost 100% sure he has a form of it.  Autism is such a wide spectrum of issues these days.  We initially thought it was just some sort of sensory disorder, but he is changing.  My son is cognitively there.  He listens and understands when you tell him to do something.  He knows what things are and is beginning to notice things more and more, like ducks.  He loves to feed them lately and notices them now when they are outside.  He is learning more and more speech and does new things every day.  But, his emotional and behavioral issues are what clued us into what was going on.  He is obsessed over weird things or objects, gets fixated on one thing for hours or even days, babbles instead of talks most of the time, is super sensitive to light, sounds, touch, and is super finicky with food.  He only eats a few things.  If something gets cold, he won’t eat it.  If something has a weird appearance he wont eat it.  He touches all food to his lips before he eats it.  He has rituals.  He throws fits for no reason and is super hard to calm down when he gets in those moods.  He is super active. He is in his own world.  I took him to the Meridian Mall today.  He loves to play there.  It has become more and more apparent to me how withdrawn from social interaction he is.  There was this boy there, probably 3 or 4 who was completely “normal” that wanted to play with Scott.  He was the only other boy there his age and he really wanted to make a friend.  But, Scott had no interest in him.  It was like he didn’t see him.  He didn’t even acknowledge him.  The little boy kept coming up to me asking why Scott didn’t want to play.  That was hard.  How do you explain to a “normal” boy that my son has no interest in such things?  The boy kept running behind him hoping he would start to play with him.  Scott just plays on his own.  He would rather play alone than with people of his own age.  These are all signs and symptoms of autism.  Textbook, actually.  There is no denying it.  We tried to deny it for a year.  We kept thinking it would go away, but it hasn’t.  



There is no way any mother that has a normal child can understand what it is like to not be able to communicate with your child.  I cannot have a conversation with Scott.  I can say little things to him and he understands what I’m saying, but as far as talking about what he did in school, or what he wants to do for the day are things that cannot happen right now.  I cannot make crafts with my son.  I cannot enjoy a board game with him.  I cannot read to him because he won’t sit still that long.  I cannot cuddle him because he is super sensitive to touch sometimes.  I cannot make a nice dinner and have him eat it because he will not try anything new.

 It’s a whole new world.  It’s a challenging world and lately, it’s really wearing me down.  I’m depressed.  I have no friends here.  I have no one that I can call and talk to or go out with to get away from it all just for a few hours.  I keep it all bottled up inside.  I have actually considered getting counseling for it.  I just need some form of release and someone to listen to me.  It’s hard to talk to my husband about it because he feels guilty.  Autism runs in his family.  Three men in his family are autistic.  One is his brother who is total non-functioning autistic.  He feels guilty.  He thinks it’s his fault.  But really, there is no way to tell how he has it or why.  Adams son Cody is perfectly fine.  I thought genetics can play into it, however my son's pediatrician told me that there is no strong evidence that genetics are a solid reason that a child has autism because many people have autistic children that have no autism in their family.  It could be anything.  It could be development in the womb, environmental factors, the foods and drinks we consume.  Anything can be a factor.  There is no way at this point to pinpoint what causes autism.  That field of study is growing, however nothing concrete has been found.  No matter how many times I can tell Adam it isn’t his fault, I know he will always feel that way.  It tears me up.   I don’t blame him.  I love him.  We knew that it could be a possibility if we had kids but we wanted a family.  I have no regrets.  It’s just going to be more of a challenge than we thought it would be.  I love Scott.  I love the joy he has brought to my life.  I want the best for him.  Now, we have a new baby.  There is always that fear that he will have it as well.  It’s scary. 

I also just wish people understood how hard it was.  People stare when he babbles the way he does, or when he has his fits.  They look at you and judge you.  They don’t understand.  Sometimes I just want to scream at them but they don’t know.  They will never understand unless they have been there.  I wish it was an easy fix but I know it is going to take time and a lot of therapy.  Scott has been in special education classes for over a year now and he will be there for a while.  I know that with early intervention Scott can lead a somewhat normal life.  I’m praying that he keeps getting better and learns to deal with his disability.  It’s a learning experience for us too.  We have to learn and grow with him.  That is our duty as parents of a special child.  I’m scared.  No, I’m terrified.  There is no way to know what this life is going to be like.  Will he have a normal life?  Will he ever go to college?  Can he live on his own?  Will he ever have a family?

Most people don’t have to worry about such things for their children.  I think about my brother in law.  He has been in a home since he was a young child.  I can’t image that for my son.  I hope that he will grow and flourish with the help he will get.  I hope I can be strong.  I hope I can be there and be active in his therapy.  With how much I work, it’s going to be difficult.  I just hope I can do and be everything everyone expects me to be.  I’m scared…..so scared.