Thursday, October 1, 2015

How I Got Started on This Path - Part 4

From here
This is a continuation of our story being told in multiple parts. To start at the beginning, or to catch up on a part you missed, check out these links: Part 1Part 2Part 3.

When we got the testing back we learned something very new. We learned that Autism is not just not looking at us, not speaking properly, and stimming. It's so much more, so much of a whole body experience for these kids. In short, our kids were sick inside. Gut issues were horrendous, yeast was flaring, immune systems were not doing their jobs, the list goes on.

So, we piddled around with biomedical approaches, never being truly serious about it. And, we had sick kids. Oh, the world saw Autism and never cared that we weren't giving supplements or such, but we knew the truth and were just too tired, to worn, to frazzled to keep up with the stringent protocols.

Then our older son started to take a turn for the worse. Let me stop here and ask you a question. Did you know that if a child has Autism he or she can have a whole host of issues that have absolutely nothing to do with Autism but affect him just as much? Yeah, it's logical to us but there are many, many doctors who have no clue. They see Autism and then try to make every issue your child has fit within that world. It's like trying to fit a broken leg under the umbrella of a child's diagnosis of brain cancer. A child with cancer can simply break their leg and need completely different and totally unrelated treatment for that leg. Doctors need to remember that.

Our son used to love going to our local park with my husband. There was a nice lake there with a hiking trail around it. About half way around the lake, if you were willing to climb down a bit and go off trail, you would find a hidden little cave. They spent so much time in that little cave playing and talking. The entire trip, if you never went off trail, was a bit over a mile long. But, with what my husband and son did, it was probably closer to 1 1/2 - 2 miles total. They went off trail a lot to explore whatever suited their fancy. My son would come home with energy to spare.

Slowly we noticed he wasn't handling these walks as well. His energy levels seemed to be decreasing in big ways. He also, during this time, started to slow down on his eating. He was limiting his variety of food and restricting his intake. It seemed as if he honestly didn't even feel hungry most of the time.

It took us years to figure any of this out. We still don't have a full understanding of what is going on with him. But, we are getting closer each day. After our son had pretty much fallen off the growth chart, our GI said it was time for a feeding tube. He just wasn't able to sustain himself with his oral intake. So, a year ago today (wow, it just hit me, today is our tubiversary), we had a G-Tube placed for our son. It was the scariest thing I ever did for him, and it's been the best choice we ever made for him in traditional medical care.

He also started to have what we call "crashes". He just has no energy at all. His whole demeanor changes. It can take something as big as walking a few aisles in a store to cause one or something as small as having a tube feed. Everything makes him tired. Naps or a good night sleep don't take it away. Because of this we are the owners of two new things.

1) We now possess a handicap placard for our cars. That was shocking to see come in the mail after our doctor sent off the forms to the state. I wasn't really prepared for that and what it implied about our family.

2) We now own a wheelchair. Our son loves it. I think he likes that there is no more pressure for his body to do more than it can anymore. He does what he can, the chair does the rest. I hated our visit with the DME and therapist to order it after our doctor prescribed it, but the second we saw it and saw our son's face as he sat in it, I see it for the blessing that it is.

I am going to stop here. I will finish up with part 5 and end our story telling you how we tied all this into moving to a more toxin free life. You needed to know our history to understand our present.

Talk soon.


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