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Thursday 19 January 2012

Things I wish some one had told me

When you are told you child has a devolpemental issue you are told certain things like take time because your child may need extra time, and I will want to see your child more often. I am sure there are many more that I am unable to think of at this time but they are not important, it is the things no one tells you that matter.

I have a list of five things I wish that some one had told me when I found out mini-man has ASD, today I am listing them in hopes to share them with others who may need the information.

1) He will not sleep. This is a fact, I have talked to other parents with children who have ASD and most seem to have this same problem. I have talked to different parents and the only thing that I have heard is a sure fire cure is perscription drugs and I am not ready to go there yet. Until we can do something about this I will be living on Diet Coke

2) You  will seek out other Parents advice. It doesn't matter how many Dr. you see or how often you will want to talk to others who have been there and shared a simular experance to you. Sometimes this will be better advice then what the medical professionals tell you sometimes worse. Remember one day other parents will be turning to you.

3) People will try to tell you what they feel you should do and in general do not listen to them. When you tell someone what is going on in your life with your child they will want to help you fix the problem and give you advice most of the time this will not work for you child. The people mean well and may  even be your parents but they do not live with your child and most likely do not live with you or have a child with the same problems as yours. The major exception to this is parents who have a child like yours and if they have workd on the same problems. 

4) You know your child and what works for them. Trust yourself. I know that the experts say you should do things one way and you try but it doesn't help but you try a different way and it works do it your way. I wish I could tell all parents this. You are a good parent and you love you child(ren), You know what they are able to do, what they can't do, what you are teaching them, and what they are unable to handle, work with this and forget what the experts say they do not know your child.

5) Do not feel guilty if you can not afford, do all the treatments and therapies you want, as long as every one survives then all is well. If you live in a state like MI your insurance may not cover all conditions and ASD is one and therapy, and treatments add up. This is the one that I just learned. I want to help mini-man how ever I can and will try anything just about if I can pay for it. Here are two example one is Vit B12 shots. The Dr. suggested I think about trying them and I wanted to the thing is it cost too much money. The second is a gluten free diet. I am trying that but failing mostly do to people who are unwilling to follow it causing mini-man not to eat what is gluten free and going to others houses and getting what he wants.

Theses are some of the things I wish some one had told me when I got the ASD diagnosis.

Monday 9 January 2012

Choices

WARNING: this is a very personal post and filled with musing from a depressed mother who is feeling guilty for what her son is living with and wonders if she made the right choices 

I am a believe in a women's right to choose whether or not to have an abortion. I know this is not something I would do but I would not take the choice away from some one because I know that some people do this for personal reasons and there for will not judge them. But that is not the point of this post. I want to talk about what I would do if I know what I was getting into with having a special need child if I could have know what life was going to be like not taking into consideration whether or not I could actually have made the choice myself.

I never expected life to be easy for me, I don't know why it is just how I have always felt. Maybe it is from growing up on a farm or being a black sheep of the family. all and all it doesn't matter. The thing is I never expected life to have given me the curves it has. I have one ASD son and an ASD husband and a baby. Life is far from easy or relaxing but I wonder sometimes what it would have been like had I not had my ASD son.

They know that there is some sort of genetic link in Autism, and I was even offered a amniocenteses to see if my baby has it but I declined due to the fact that it would not make a difference to me. I would love him either was and would not end the pregnancy, and life will go on.

All this being said I wonder sometimes late at night if it was far to my son to let him be born and struggle with life like he is going to and already is. I know that in the end things will work out the way they are suppose to. Who ever is watching over us has helped me find some sort of strength that I never thought that I would have or need. I do not what my son to need to deal with what I have dealt  with and I want him to have a much easier and better life.

The other thing I wonder is will he be able to live a life on his own and do things on time. Will he be able to start kindergarten when he is 5, will he be able to go to college, get married or even live on his own? I wonder what his life will be like or even if Mini-man will have a good quality productive life or will he need some one to take care of him his whole life and forgive me for saying this but drain the life out of me for ever? I love him but it is very tiring and stressful not to mention draining of any of my wants and dreams for him and myself to take care of him.

I have talk to many parents who has ASD children and we all love our children and would do any thing for them but still I wonder if the kindest thing we could have done our children is to not have given birth to them. I have been thinking about this for many days now and still have no answer. The thing is for me I feel that I have gained so much from Mini-man I will say that I do not wish to have done anything different and if I could go back and redo the chioce to have him I would still have him even if abortion was something I could do.

I love my mini-man and while life may not ever be easy or like a ":normal" life I feel that it is his and it is a happy life if the amount of smiles and giggles we get on daily basis is any clue. I can only do what is possible to help him and give him the best life possible.