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Monday, October 30, 2017

We are fading out old medicine and I'm Making Art ;)

We are in a transitional stage in our home. We have been trying new medicine. Every time we start a new one, I have a renewed sense of hope. Introducing medicine was not what I wanted, but we needed help. Nothing was working. Medicine was a last resort and here we are; one medicine after another shows us a new side to autism that isn't always nice and tidy.

I worked in the medical field prior to becoming a stay at home mom and caregiver. I know how medicine works. I just hate waiting. I hate seeing my kid struggle during each transition. I mostly don't like to see the aggression. It's rough on all of us.

I don't know about you, but I put on my nurses hat and I go to this place in my head that allows me to just be numb to the fact that this is my flesh and blood. I watch as he seems to completely fall to pieces. It reminds me of a seizure, but its a full blown melt down that he can't control. I see him try to calm himself, but he can't. We hang on and wait for the calm to come and try to not get injured in the storm.

It so surprising how quickly this comes on and goes. It's like a tornado in this way. He calms down and then he smiles and even sometimes laughs. I am free to come back to my reality and take off the "nurses hat" and hug my boy. I tell him I love him and that I hate to see him struggle so much.

We are hoping to find the right combination of meds sooner than later. I remember how much of an answer to prayer Clonidine was for our sleep challenges. I still will not let our Doctors mess with it. They sometimes will say, "We use Clonidine sometimes to control behavior for autism" and I kindly say, "We can't touch the clonidine, that's what we use for sleep." I think I probably do the crazy eyed smile that sends the doctor on to his next idea. They never push it. I know they just have to ask.

Do you hate calling the doctor about med changes? I do. If the medicine is not working and you ask for an increase in dose or to try something different. I think I hear a hint of discouragement in the doctors voices. Maybe its just my own discouraged soul that I hear?

So here we go, pulling out of the pharmacy parking lot and I look at my husband. I told him about my hopefulness that this was the last med we would have to try. That maybe we could leave the house again and it not be so hard for our son. "Maybe this is it," I said. The thing is, I never dreamed that this would be my experience with being a mom. This is all new for me. Everyday is its own mountain of guess work and maybe's . I want to make the best of this. I'm not here to merely survive, I want to live. I want us to thrive. I'm confident that this is what we all want for our lives. I don't want this just for me, but for my kids who struggle too.

The struggle in the midst of the suffering reminds me of our mortality and how life is only what you make it. Artist do this all the time. Some of the best art work is made out of the most unlikely materials. Who would have thought that a struggle like autism could be viewed as a work of art? I believe it was Franklin Covey who once said, life is like a canvas; its up to you what colors will be used to paint it. Sometimes I just need a little reminder, that in order to make something of the canvas, I have to pick up the paint brush and start painting. I have to remember to live every moment with hope and use all the colors.