Monthly Archives: May 2015

“Letter to Me”

I was recently listening to a song by Brad Paisley (the country singer) entitled “Letter to Me.”  The song starts with “If I could write a letter to me, And send it back in time to myself at 17.”  The song goes on to describe what he would tell himself at that age from the perspective of being older in the present time.

This song got me thinking about myself and my son.  My son will be 17 in a few weeks and I thought to myself . . . what if I wrote a letter to myself the day he was diagnosed with autism, what would I say?

It has been almost 15 years since my son was diagnosed.  I remember it clearly and that emotion I felt that day comes easily when I reminisce.   In actuality, it is not the day of his diagnosis that floods me with the most emotion.  It is the day a friend gave me a copy of the DMS-IV Diagnostic Criteria for Autism and I knew without a doubt that this was the disorder that my son had developed.  The diagnosis only confirmed my worst fear.

So, what would I say to that stunned parent on that day from all that I know now?  I have been pondering this for a few weeks.  What I can honestly say is nothing.  Maybe I would just remind myself that this boy was my son and not a disorder.  I would probably assure myself that my family would rally around us and love him, actually love “us”, just as the days prior to the diagnosis, if possible, even more.

I guess what I am trying to say is that some things are meant to be discovered along the way.  If I knew everything in that one day, I would have been overwhelmed.  When I think about our lives for the past 15 years, everything has come in phases, both good and challenging.

I guess if I had to write something to myself that day, it would be this. . . .You are stronger then you think and learn everything about autism that you can.  Truly understand why your son does what he does.  This disorder is not just about not being able to speak, there is so much more to it.

When I first took my position at CAR, I really wanted to be able to help parents whose children were newly diagnosed.  I thought I really had something to offer since I had been through the same experience.  I knew how terrifying it can be at first.  But what I find in speaking to these parents as they get emotional and are beyond scared, is that I am most often silent and just listen.  I find myself saying frequently, “Just take it one day at a time.”

I think our motto at CAR says it best … .A place to start. . .A presence on your journey.

The reality is that words alone cannot make this better.  Nothing I can say will change anything, but if I can make anyone feel less alone and connected to a community of others affected by autism, I believe that I have started them in the best place to begin their journey.

Just because we can… doesn’t mean we should.

I’m always nervous when I receive an email that says, “Did you see this?” usually followed by many exclamation points or question marks or both.

It usually means that I’m about to read something upsetting – and in this case it did!

The article began with the words “Horrifying new cure” followed by the line

“some parents are trying to reverse autism by giving their children toxic miracle bleach enemas!” The article then detailed the use of a product which contains chlorine dioxide – a mix of sodium chlorite and citric acid. I did a little research, because I’m always skeptical about these things and found that in fact this does exist and is being used by some to reverse the effects of autism.

I’m very familiar with the use of enemas (not bleach, just regular saline).  Having a daughter who is paralyzed and requires enemas, I know them to be uncomfortable and painful at times.  We hate giving them to her and wish for other options, but this has worked for her and she’s never had bowel issues – thank God. We use this purely for bowel regulation!

So to think that a person would use bleach in an enema and give this to their child is hard for me to understand. I can only guess that these parents must feel desperate to want to help their child – but just because we can do something doesn’t mean we should. I should also say that the FDA has warned against this product and that there is no scientific evidence that this is an effective treatment for autism. It has caused vomiting and diarrhea and is an irritant to the skin and tissue! My son with ASD is 31 years old. I have seen my share of therapies – some very good, some that make me say, “seriously” (like this bleach one!)

I also know many parents who feel that unless they turn over every stone, try everything out there, they won’t feel they’ve done enough for the child.

But I can’t help but feel that at some point in time, we have to look critically at what’s being offered and ask ourselves if this will truly help; should we be doing this?

I know my husband Bob and I reached that point when we were offered therapy that we felt just wasn’t right for Nick – it went against how we felt he should be treated.

These are very personal decisions that each family faces. What angers me is that there are individuals, and companies that prey on the vulnerability of parents, knowing parents will do all that they can to help their children. They dangle these things in front of us – with a hint of hope that it may work and a hint of guilt should we say no.