Saturday, August 4, 2012

Always trust your mother's instinct

The OT testing results are in. They came in 4 days ago and it already feels like a month.  The results are clear that she needs work in so many areas.  She will have to go to Therapy on top of what we are already doing.  All the doctors she has have different theories about what she actually has wrong with her.

I have found a wonderful Psychiatrist for her that is ok with watching her. He is agrees that starting school and OT (hopefully ABA) will be huge changes in her life and that we should not throw pills at her now.  While he has discussed all of the different illnesses he thinks she might have at this moment due to testing, observation, and reactions to different stimuli he has also made it clear he has NOT diagnosed her with anything.   He believes in watching and making certain the child really has what he is labeling them with. That putting a label on is easy but taking a label off is hard.

I have worked for years to find people to listen to me, my pleas have fell on many a deaf ears.  I kept fighting and this is just the begging.  I just want every other parent out there to know that there is hope.  So many people will tell you they are fine, your friends might think your crazy, even your own spouse may start to think you are going over board. You might feel guilty when doctors tell you it's your fault or you are just making it up but it is worth it.

I have made a Plan for our life it is as follows

1) If you can not help her or bring anything positive the situation then you can not be apart of our team. I don't care who you are!

2) If you can not support us and the plan we are using then you can not be apart of our life.  That is Family, friends, therapists, teachers, anyone.

3) The plan will be flexible to change.  It is what The doctors and I think is best for her and if it needs to be adjusted to accommodate her better it will be. Deal with it!

4) If we do not have to medicate we won't but if and when that time comes it is MY decision.

5) The first medication is not always the right one and I do not need anyone making me feel bad about my child suffering so please keep your comments to yourself or feel free to leave.

6) I will not be obsessed about fining a diagnosis.

7) I will work on fixing what we can until she has one if she ever does.

8) I want her to be treated as normally as possible.  Yes she does need somethings that are different then other children but they do not have to be obvious and huge Lets see how far she can push herself and handle it on her own.  When we do have to step in I want to be as creative as possible and make them as small and hidden as possible.

There is so much more I will learn and want to add to this list but this is the plan I have come up with in the few days since I found out to get me by.

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