Wednesday, July 14, 2010

The Start of a Parent's Journey

Flickr photo by oxherder
The day that your child is born is one of the happiest days of your life.  It doesn't matter if it is your first, second, third, or (God help you) tenth child, you are excited to meet them and can't wait to see what sort of person that they will become.  If you happen to be lucky (heh) enough to have multiple children at once, you will also have the added excitement of wondering what it would be like to be a twin or triplet and will be vaguely uneasy about the notion of caring for multiple newborns at once.

Soon you will become comfortable in your role as a parent and, while wondering what it would feel like to sleep through the night, you start thinking about what sort of future that your child will have.  What will they do when they grow up?  Will they have a family of their own?  What sort of person will they be.

But not too long after that, you may start becoming concerned that something is not quite right with your child.  They aren't acting the same as nor developing as fast as their peers.  A seed of doubt enters your heart and you start worrying that something could be wrong with your child.  Fast forward several weeks, months, or years and you arrive at the fateful day when a "professional" has agreed to look at your child and tell you if anything is amiss.

On this day, your life as you know it can change.  If you are lucky, the professionals will tell you that you are being paranoid and there is nothing wrong with your child.  If you are unlucky, you might join the growing ranks of families whose children have disabilities.

For my family, that fateful day came when my twin daughters were just 18 months old.  My wife was already carrying our third child on the day that the "professionals" walked into the room and cheerfully told us that they knew what the problem was - our daughters had autism.

We were given a brief overview of what autism is and handed a stack of papers to read about what could be done to help children with autism.  We were given a few phone numbers that we could call for help and then kindly shown the door.

In a way, we were lucky.  The "professionals" who changed our lives forever at least had the decency to give us a nice stack of papers to read before showing us the door and telling us to have a nice life.  Many families don't even get that amount of guidance.

But there are always the few medical professionals who will take the time and effort to guide you down an appropriate path.  We were actually very fortunate to find such a professional who, six month after the initial diagnosis, helped guide us to find appropriate treatments for our daughters.  In that we were extremely lucky and I doubt that one out of hundred families is so lucky.

I am not writing this so that you feel sorry for families with newly diagnosed children or for my family in particular, but rather so that you can understand where most parents are coming from.

Parents are left on our own from almost the first day and have to find their own way.  That initial period is what shapes our views and guides us as we try to find a way to help our children.

1 comment:

  1. Hi MJ
    Yes you were lucky.
    I was told that my life was ended, my family life was ended as I knew it and that my son will be a person with no language, no understanding and with the need of strong medications to avoid doing harm to himself or us. He - the neurologist, an "expert"-also added that it was genetic and nothing to test and pointed to the door. Before we left he put on the table a page of yahoo, where " a diet" was being tried. He also prepared a prescription for celiac disease- but he said"I do not think that he is celiac".
    We found dozens of concomitant medical problems to the prognosis of severe autism with "nothing to test" he did, in the following 6 years. Selenium deficiency, for example, is a medical problem. And yes he was celiac, between many many other problems. No one of the things he told us was true, or properly based with science.