Once again I offer up something to someone asking for advice and I get ignored.  It’s because of this sort of thing why I have, for the most part, quit participating in most of my Yahoo Groups and have left a number of them.  Actually, earlier in the week I asked for some advice from another group and was pretty much ignored there was well.  The two people who responded came across as rather patronizing.

Incident number one: I am rather worried about this blood pressure issue of mine.  When I went to the urgent care clinic they told me I should probably see a cardiologist to make sure there was nothing majorly wrong.  I know that high blood pressure is common with hypothyroidism but what I wanted to know is if it was common with fibromyalgia and I shared with everyone what my blood pressure readings have been at the grocery store and drug store when I go to check it.  The worst it’s been is 150/100 but it’s not been good at any point in the last two weeks.  From an entire list of people who are normally chatty and offer support to each other I was blown off.  Two people were patronizing with their answers, treating me like I was a child who didn’t know how to take care of them self, and really offered anything of use.  No one answered my question from their personal experience.

Incident number two took place today on my autism list.  Someone was asking about speech apraxia because her son was recently diagnosed with it and he has been in speech therapy for a year and no one has seen any improvement.  Something we dealt with for 8 years with one of our children.  I offered up the story of our daughter who didn’t have any of the normal signs of Celiac disease that doctors normally recognize.  All of her symptoms were neurological.  One of which was speech apraxia.  She was tested for everything under the sun and no one could figure out what was causing it.  It was only after gluten was removed from her diet that she was able to speak clearly.  Someone spoke up about some supplement that they used that made improvements with her son.  That is what everyone has been focusing on, that supplement, where to buy it, how much to take, etc.  I was ignored.

That illustrates the one thing about autism that really pisses me off.  I even went off about it in the grocery store yesterday when I seen green batteries, they were both environmentally friendly and green in color, with a little puzzle piece on them.  Five cents of every purchase goes to Autism Speaks.  I have nothing against this group per se, but it annoys me to no end that when it comes to autism associations they get all the attention.  Whatever happened to the  Autism Society of America?  Both have different focuses.  Autism Speaks stands on the bio-medical soapbox that with biomedical intervention that all autism can be cured.  They promote things like chelation, supplements and dietary changes.  To validate their point they have Jenny McCarthy as a spokesperson and we all know that when celebrities talk people listen.  The Autism Society of America is focused on education, helping those with autism lead better lives and directing people to the resources that they need.

The thing that really upsets me about biomedical intervention is that it’s not a one size fits all cure.  Every child with autism is not cured by this.   I know parents of autistic children who will tell you they dropped thousands of dollars they didn’t have in order to buy expensive supplements and put their kid on a GF/CF diet and there was no improvement.  I don’t fault anyone for trying it, I really don’t.  It helps some kids.  Those parents of the kids who it helped will tell other parents that their child can be cured with the same treatments.  When a parent has one of those kids who can’t be cured with biomedical intervention it’s devastating.  So many parents spend so much time looking for cures, they are so hell bent on making their kid normal, that they ignore who their child is and never accept him or her for who and what they are.

Raising a child with autism isn’t easy. I don’t wish it on anyone. I have no idea what it’s like to have to raise one that is severely affected.  Neither of mine are, they are on the mild end of the spectrum and that is challenging enough.  Biomedical intervention hasn’t worked for either of my kids and after a genetic work up on all seven of my children the doctor found a genetic basis for their autism, not an environmental one.  My kids can’t be fixed.  They are who they are.

The fact remains though that I pointed out something that someone may have overlooked based on first hand experience and I was ignored. It’s annoying.  Add that to being patronized on another topic I am finding that I really have no use for online groups.  Apparently I am the outsider on both.  I am not worth giving advice to or listening to when I have something to offer.   It’s things like this that make me feel alone in the world.  No one should have to feel like that, not in our age of the internet where you can connect with anyone anywhere in the world.

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