The other day as I was channel surfing in the car, I caught the end of some financial advice Dave Ramsey was giving to a family regarding a special needs trust for their child with autism. The parent was considering rolling the college fund money over into a trust. Ramsey basically said to wait to set up the trust, dump money in a more liquid account because anything could happen in the next ten years with the advances they are making in autism.
Well that one gave me pause. ???
Just last week a family member contacted me to let me know her three year old son was recently diagnosed with autism. After I caught my breath, and cried with her, I referred her to some good resources and tried to give her hope. But I also got angry and cringed: shouldn't there be more answers now? Shouldn't we have a better therapy protocol? Shouldn't services be more readily available? Shouldn't families have far more hope?
It's been nearly a decade we've been pursuing what I've now come to label "quality of life" for Jackson. Most times, I feel like we're doing a pretty good job of it. Other times I feel like there is so much more we could be doing. A simple google search yields a wealth of approaches:
restrictive diets
holistic medicines
chelation
hyperbaric chamber therapy
vision therapy
stem cell transfusions
therapy after therapy after therapy
The one thing they all have in common is cost. Don't get me wrong, I'd sell everything I've got, short of my soul to extinguish this demon. Unfortunately, there is no magic bullet, no wonder cure. Which leaves me feeling empty, though not hopeless.
Generally, I feel like we're making good choices for him; helping him be the best he can be. I do have days when the google searches haunt me and I wonder if what I'm doing is right or enough. I have other days when I am angry and frustrated; still others when I am full of hope and touched by my son's gentle spirit.
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