I don't know why it irritates me so much when people question Tristen's autism.
I should be happy.... a lot of parents out there would love it, I'm sure, if their child's disabilities were brought into question, because that would mean progress.
I get that.
I know I shouldn't complain.
I just can't shake this feeling. I get so wrapped up in it....which is why I blog.....mostly just for myself....to get these thoughts and feelings "out there" and then I can move on.
Why would someone question Tristen's disability?
Do people think I am dishonest? Would I lie about something as serious as Autism? Would I wish for any child to have it? Would I tell people my children had any disorder that I really did not truly believe they had?
No.
Do they think they know more about Autism than I do? I'm not saying I'm an expert, but I have dedicated my life to this cause...not only for my child, but others in every community where I have lived...so, I would find it poor logic to conclude the average person has more autism experience and knowledge.
When confronted like this, I feel I need to explain...and when I'm met with speculation, then, I worry I sound guilty, like I'm making excuses.
I've written about how kids on the spectrum are individuals, and do not always fit into cookie-cutter categories: http://autismhealth.blogspot.com/2013/09/if-youve-met-one-person-hit-by-bus.html
This doesn't help, however, in a social situation outside of the internet.
How do I tactfully sum up a response? How do I sum up 15 years of consistent hard work and dedication, doctors visits, diet, allergy treatments, HBOT, chiropractic care, chelation, vitamins and supplements.....there is no one key answer to how/why he is doing so well!
"I guess I'm just one of the lucky ones!" Fail...yuck...sounds so disprespectful of those whose journey is more demanding.
"You should have seen him before!" Fail....sounds like a put-down to Tristen, and in actuality, an exaggeration by omission.
"He is vaccine damaged, which is often misdiagnosed as autism." Ooooh, now that would really get them thinking....AND probably avoiding me from that point on at all costs. Especially the young mothers with lots of little kids and those working in the medical field. If I could just avoid people that don't agree with my views, it would be easy...but often times I have to edit myself so I can work amicably with people at church.
"He is recovering from autism, due to diet, supplements and detox." Fail. I'm assuming they will stop listening at "recovering". Then, you are just the crazy nut-job who thinks their child can get better. I probably believe in aliens, conspiracy theories, and santa claus as well.
I don't know the correct response. It's hard to know how a person you have met recently is going to react to your comments, which is how I have learned to tailor my conversations over the years.
I have many Facebook friends who get tired of my posts about vaccine injury, diet and toxins and simply block my posts, which is better than an arguement. (When they have an affected loved one, they will know where to find me.)
What most people don't know, is this was never about "curing autism". I never set out to do that...even after hearing stories of recovered children. This was about making a sick boy well. That's it.
I wasn't afraid he might have to live at home with his family way into adulthood. I was worried he wouldn't make it to adulthood.
Fever after 7-day-long fever......daily vomiting, unexplained rashes...ear infections and illnesses were a constant in our house. As much as I hate asking for help.... I did what I had been taught was the right thing to do; I turned to doctors and nurses to help me help my son.
They told me I was over protective. They told me to stop calling unless the fever was over 104 and lasted more than 7 days. When I called then, they told me to alternate Tylenol and Motrin every four hours. I cried out for help from dozens of different doctors in three different states and no one had any answers....and crushingly, no one really cared.
My first internet research was not about autism. Autism I could handle....I had figured that part out. It was this constant sickness keeping him from school and being a happy little boy. I watched helplessly while he layed on the floor lathargic for yet again another episode. I really really needed answers.
I read about childhood illnesses. I tried to find something that fit. I knew there was something everyone was missing.
My mother-in-law bought me the book, "Changing the Course of Autism" by Bryan Jepson. I hadn't read any autism books up to that point, even though Tristen was 9. I was focusing on illness, remember? I could handle the rest. I just couldn't watch him wither away in front of my eyes.
When I started reading this book, and learned there were other children out there like my son....children who were autistic, but more impressivley, they were sick...my mind was opened up to a whole world I never knew existed....a world where doctors acknowledged what a mother said and did crazy things like TESTS!
That was all I needed to know and I was on board. I set out to find a doctor who would treat my son.
The rest is great history....and I guess, I sometimes forget where we started, as we sometimes do as parents focused on progress. We have no defined "goal"...as long as progress is being made, we are happy. We have been so very blessed from the Lord above with miracles touching our small, insignificant family. None of this would be possible without Him.
We're all on a journey....whether autism is a pit-stop or along for the entire ride.....we can never really know what it is like walk in someone else's shoes. We must be empathetic and non-judgemental.
It's so interesting to me how things have changed....in 2000 when we got the diagnosis, we had to explain autism because only a few people had even seen RainMan. Now, I am argueing with other's perception of what autism is and am grilled about my practices and treatments.
I guess I'm still not sure about what the right response is. The first step, I guess, is not being so shocked by it, so I sound befuddled in my explanation. And, not worrying so much about what other's perception of me is, and simply stating the truth, would help as well.
It's so much easier talking to those who I don't feel I'm trying to convince. I just tell it like I see it. You don't have to agree, you just have to respect my journey.
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