Monday, July 16, 2012

Grasping At Straws

Since I am pretty vocal about my daughter's Autism, it seems that people feel comfortable sharing their "autism stories" with me.  I hear all about other Autistic children, from their grandparents, aunts, uncles, neighbors, friends, parents - friends, congregation members, and complete strangers.  Most of what I hear, I take with a grain of salt because, like I have said many times before, if you are not a parent of an autistic child, you just really don't "know" what it is like.  Of course, that does not diminish the involvement of many wonderful people out there that care for Autistic children.  I do not want to downplay their role in any way, because God knows we need them! 

I have a friend, who was concerned about another friend, who has a child with Autism.  As I was visiting with my friend the other day, she mentioned a new diet that her friend had put her child on, and a new therapy that they were trying.  She mentioned that it was just the newest of the fad diets and therapies that have been tried on this child.  I am not a nutritionist or therapist by any means, but I do generally know the concept behind most of the regimens that are out there in the Autism community.  There is much talk about ridding the body of toxins, and certain types of foods causing different behavioral reactions in certain children.  I have actually seen autistic children "go a little crazy" after eating certain specific foods.  Of all the beneficial interventions used for autistic children, I think changing their diet would have to be the most difficult.  I have never done this with Katie, so I don't know first hand, but I have spoken with many, many mothers who have literally thrown out the entire contents of their pantry and refrigerator to comply with the structure of certain diets.  I will never forget the classmate of Katie who had to pack his lunchbox for a field trip to the restaurant, because his mother would not be there to ensure he followed his diet.  That mother would spend hours making his meals at home. 

I am not here to judge, and since every Autistic child is different, every parent has to be different too, but this whole conversation with my friend brought up an interesting, sensitive, and debatable topic.  How do you know which therapy or diet is right for your child, and when does it get to be too much?  How do you decide that enough is enough, and when do you realize that you are grasping at straws?  At what point are you limiting your child with the intention of helping them, only to be actually depriving them of harmless treats?  And how do you measure the effectiveness of these therapies and diets?  The answer to these  questions can only come from the parents themselves, but I have heard so many others question the parents' ideas and methods.  I understand both sides of the coin.  The parents feel that it is their right, and obligation, to do what they feel is best for their child.  I also understand how the "others that love them" can feel frustrated and bewildered by what may seem like far out interventions.

The bottom line is that, as Hillary Clinton once said, "It takes a village to raise a child".  If everyone who loves that child is keeping the child's best interest at heart, that is all that matters.  Keeping that in mind, the outsiders have to trust in the parents judgement, and also follow their guidelines for raising their child.  Do not sneak them food off the forbidden list, don't keep them up way past their bedtime or engage in any kind of activity that might seriously under mind whatever therapy or behavioral modification the parent has chosen for their child.  It might seem strange to you, you may not agree with it, but follow it anyway.  At some point, if you feel comfortable, have a conversation with the parent about what bothers you concerning the diet or therapy.  Offer assistance, but don't judge the parent, and don't gossip about them.  They have a hard enough time as it is.  And parents, really look into and research whatever methods you are choosing to use with your children.  Just because a celebrity is promoting something, does not mean it will work for you.  Each Autistic child is very, very different from the others.  Talk to your child's doctor or therapist before trying something new.  Find out if will even be reasonable for your child.  Don't jump from diet to diet, from therapy to therapy, trying to "cure" your child or create some kind of miracle transformation.  There are many wonderful methods and therapies and interventions and dietary modifications that may work wonders if done properly.  But not every one will be right for you.  Find what works the best and stick with it.  Sometimes, in our Adventures in Autism, we must not forget to love the child that we have, instead of just waiting for the child we want them to be. 

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