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Tuesday, January 15, 2013

Please Don't Take My Sunshine Away

"Sunshine you are my sunshine, you make me happy when skies are gray..."

"Mommee sing again pwease in the wegular voice no qwiet voice pwease"

I sang it in a regular voice and the boss was out. What a long day. We went to a new neurologist today. The Boss is going to be 5. Super Daddy and I always knew that down the line we would be faced with the big decision of medication. We agreed when she was almost 2, we will wait until 5 to talk about it. She is going to 5 in a few weeks and I am no where near talking about it.

The neurologist was amazing. I have met my fair share of neurologists between my childhood with Billy and Grace's adventure. A good one is very hard to come by, in my opinion. But this guy was on the money. When he entered the room he quickly hushed me and wanted to get to know her before he heard anything I had to say. Which I loved. so there was no biased opinion formed. He played with her and examined her. He had such a way with her, such efficiency.

Neuro appointments are so hard because this is the doctor where you talk mostly about the negatives, the child's down falls, the child's delays. It is scary that after a while it becomes so natural to say and list what your child can't do. And how saying "she is extremely aggressive and violent" can just roll off your tongue. Luckily Boss Lady was herself, so he got to see the true Boss.

When he examined her he touched upon her having a delayed reflex and very low muscle tone in her arms, hands, and trunk. I have stopped telling physicians this because it is always attributed to her ASD and her Sensory Processing Disorder.(so I gave up being heard in that department) But he had little concern and suggested looking into it. I felt validated which was awesome as a autism mommy. After his full examination we talked. A two way conversation with a neurologists, something I never experienced before.

He spoke about her being highly intelligent, but we can only get a small glimpse of that because she is so impulsive and can't focus. He thinks she is scoring lower cognitively because she has so much other transactions going on in her mind. He told me he wanted to run every blood test to rule everything out. Everything he said made so much sense. Then he said "Have you thought about medication?"

My heart stopped. It was time. He then went on about how school demands and curriculum will get harder and as he spoke my memory rewound all the way back to the beginning, it was Super Daddy and me at our kitchen table saying "Let's try everything first and we will use medicine as a last resort" In saying that sentence I really believed we would never get here, because I was convinced something else was going to work. I snapped back into the conversation as I was blindly nodding along. Just in time because he was asking me, What do you think? My heart said I agreed but I am very scared. My educated mind thought about side effects, chemicals in her body, the rate of adults who are drug dependent because they were on meds as a child, every statistic raced through my mind. He saw I was very uncomfortable and backed off, which was a good judge of character. "Ok let us come back to this in 2 months", he said. He wrote me a prescription for the extensive blood work and we were on our way.

So here I am 2 days later still not ready to talk about this. I have showered Grace with gifts from target out of guilt and let her color on the wall and eat a bowl of raman (she is gluten free). Last night I punched out of Mom duties and it was a free for all after 7 pm. I need to face reality and make a decision. The honest truth is we have tried everything under the sun and even the moon. Nothing has worked. Yes many of the things I have modified in her life has made behaviors improve. I fear medicine will change who she is, having her be dependent on a chemical substance that is suppose to fix her because she is broken. If I give her meds am I admitting she is broken? Just the idea of the pill pulls a lot of feelings and emotions to the surface. How did we get here? Should we have done something different? I just can not believe we are really down to the last resort.

"...you'll never know dear how much I love you, please don't take my sunshine away"

3 comments:

  1. We haven't approached the subject of meds for my son yet. I can only speak for myself on the meds I have taken, and still take, for ocd and depression. I had excellent physicians help me find the right meds, the right dose, the right balance. I honestly think it saved my life. In changing some of the chemistry of my brain, I have found myself, not lost anything. It can be terribly difficult to decide on these things for a child. I have heard quotes from my husband's students (he teaches students with severe ASD and co-morbid conditions. One, who was thought to be severely cognitively delayed, was violent and unable to focus, started talking after the right meds were found. He said that it was better with his pills because he could think of just one thing instead of everything all at once. I would describe my own experience as being in control of my emotions instead of having them cascade into meltdowns. The process of getting to the right meds, dose, balance can be difficult, especially with a child. These meds are not going to 'fix' her. What they do, ideally, is give her a chance to be herself without the misfires of her brain chemistry ruling her. If they don't do that, then they aren't the right meds. Try not to think of this as a 'fix' or a 'chemical dependency'. Like the insulin a diabetic takes to control their levels, or the blood thinners a person at risk of heart attack and stroke takes, these meds are intended to do for the brain what other meds do for the body, supplement and regulate the functions that are causing problems. Sorry, I didn't mean to get on a soapbox or write a thesis here, but I know how hard it is to make these decisions. Try not to be afraid of losing the child that she is. Just imagine how she could be more herself with a bit of help.

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  2. I know the medication decision is hard. My boy will be 4 in just a few weeks and we're starting to cross that bridge, too. For him, it's for anxiety. I will say that I - like Kermommy - have been on medication as well, but I have been on it for an anxiety disorder. I can also speak to the fact that medication helped me feel better and more like myself. The worries of the world didn't cripple me as much as they did before I was on medication.

    And you didn't do anything wrong! There is likely nothing you could have done that would have prevented this conversation from having to take place. Believe me, I suffered - and when I say suffered, I really suffered - for nearly 20 years with severe anxiety because I thought that I must be doing something wrong, that there must be something else I could do rather than accept medication. The thing is, there wasn't. My brain chemistry was different. No amount of positive thinking, yoga, or any other relaxation technique changed that for me. I felt like I was failing when I accepted that prescription, but then I realized that it was what my body needed to feel whole again.

    Ultimately, only you know what's right for your little girl. I think it's good that you're taking a couple of months to really think it through now that the time seems to be approaching. I hope you come to a decision that you can feel comfortable with as a family, whatever that decision may be.

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