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.

Waiting for the occupational test results and sensory issues

So my daughter has had cognitive and occupational testing done.  We have the results from the Cognitive  tests stating that she has supirior intelligence for her age. I am awaiting the results of the occupational testing any day.  I mean I literally check the mailbox often  and I want to cry when the results are not there.  They could tell me before we left that she HAD oral sensory problems but wanted to score the tests before telling me the others.

Before I left the therapist gave me some suggestions on how to help her self soothe or to help some of the issues we are facing.  I started implementing them slowly to see which would work and which made no difference.  I have to say at first I was so excited to see a difference in my child's behavior.  If we were going to do something I knew would cause her melt down or act out. I used a sensory game or toys. The behavior difference was to the point that My parents and I would would exchange quick glances trying to make sure the others saw this and we were not going crazy.   As she found an ability to soothe herself she  from these therapies she seemed to become more aggressive and volatile when she did. It has been harder to soothe her with the old ways we used to cope with. As if she has seen that there is a better way to live and she is now fighting to get there.

Has anyone else experiences this with their child? If they have sensory issues or SPD  was it like this in the beginning?  I just really need someone to tell me," You are not alone and this will get better."