Advocating

I must admit some of Thomas’ time at Andrus I don’t remember.  He spent 3 years there and I didn’t journal or keep notes. With the exception of this blog I’ve never journaled or wrote anything down (unless you count keeping track of Thomas’ fits and tantrums back in the day) The major milestones of course I can recall but much of the mundane day to day…no.  I can go on with relatively minor incidents but why?  Most are no different than any incidents at any other typical school with any typical child.  I did say I would cover more in future posts as there is one time in particular that I refused to back down and proved even to myself how serious I was about advocating for my son and how deeply my son had rooted in my soul.

I had requested Thomas have updated IQ testing performed.  Unfortunately the grad student neuropsychologist decided to perform such testing when we were in the middle of taking Thomas off one of his major medications. The psychiatrist and I were concerned that the med was affecting him cognitively. In other words preventing Thomas from learning. The stopping of this med proved to be not good at all as evidenced by him throwing things at me while I was driving and a return of the aggression. I couldn’t understand why the testing would be performed during this time of instability but the grad student did it anyway.

Well it turned out that the testing showed Thomas has a low IQ, around 47 which classifies him in the moderately retarded range. Now I know this is just a number and in no way defines my son. Thomas is Thomas no matter what label, diagnosis, or IQ range he wears. But…how could testing performed during a period of instability be accurate? I was furious at the neuropsychologist for this. At a meeting my husband and I were called to attend; In a very calm and controlled voice I told the neuropsychologist how much I indeed disagreed with her findings and how dare she test my son during a major med change. I paused and the neuropsychologist dared to speak. I raised my voice and exclaimed, “I’m not finished!” A silence fell over everyone attending the meeting. I saw my husband lean back in his chair and his expression said, ” oh no lady…now you’ve done it…get ready.” Her interrupting me set me on a tirade of everything I saw wrong with her testing including the fact that she was a grad student and I had in the past told the staff Thomas was way too complicated for students, please don’t allow students to “learn” off of him. I was assured up and down left and right that the student was supervised and logically I know this is true but I was way too upset and felt so wronged for my son. The neuropsychologist barely looked at me when I was finished. That was fine as there was nothing she could say to me at that time that I would have taken seriously.

Fast forward a couple if years the testing was done again with the meds restored and the results were the same. Same IQ. Some would say I should feel embarrassed for my original reaction but I do not. Bottom line is I advocated and spoke up for my son who was unable to do so for himself. I always hoped he was watching me and would see and understand what I was doing for him so that someday he would be able to advocate for himself.

The funniest part of this whole journey is that I used to be a quiet person. I really did not speak up if I thought something was wrong or if I was wronged. It took me receiving this gift of a child from God to change me into someone completely different. I was transformed. I’ve said it before and I’ll say it 1000 times, I would not be who I am if it weren’t for my son. I’ve stood up to doctors/head of departments at major NY hospitals, I’ve gone head to head with the best of them at the school district. I’ve also learned you need to pick your battles and sometimes the professionals I’m yelling at really do care about my son.

I’m not writing this post to brag on myself. I’m hoping someone needs to read this and know you have to power to speak up and advocate. I’ve definitely made mistakes and today I’ve learned not to yell, that people are much more happy to help you when one is “nice”. I rarely yell these days and when there is a situation that it’s almost warranted I stay calm and almost smile at how I would have reacted years ago.

What has also helped me is prayer. Praying to the Father for direction and guidance. He has never let me down. Ever. I will admit that patience and trusting Him to come through is so, so hard but absolutely worth it.

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