Thursday, April 10, 2014

Questions You Don't Think You Should Ask: Why Haven't You Tried This?

People want to help and it frustrates the daylights out of them when they can't.

There is a tendency to see a picture that is off center and to attempt to straighten it.  We want things to be ok.  Maybe its that innate sense of community and preservation and protection.

Ever since it was first discovered that Isaac was not following the typical developmental curve, people have posited their opinions of how we as Isaac's parents should proceed.  We have been asked about diet change, alternative medicine, traditional therapies, educational strategies, vitamin therapies and the pursuit of further diagnosis.

Sam and I do our best to listen...really love.  We generally have a good ear to the ground when it comes to new information regarding autism.  I am a news nerd by nature so I note any study or article that comes across my NPR or BBC feed.  I will occasionally miss one.  I'm not perfect.  There is a lot that I don't know and honestly can't understand.  My literature minded brain needs hard scientific studies translated a bit before I can fully comprehend them.  New information is good information.

Sharing information is one thing.  We listen.  Sam and I research that information.  We talk about it - extensively.  We may involve Isaac's medical, therapeutic and/or educational team.  We weigh the options.  Our general end all test remains the PITB Factor.  Items that pass the PITB may be tried; those that do not are for the moment at least discarded.  (For those that wonder...PITB is a reference to a Sam and Spring made standard and refers to Pain In The Behind Factor.)

The extent of Isaac's struggles were clear very early.  I remember well teaching him how to use a spoon giving full hand over hand prompts and then fading back to wrist, elbow, etc when he was two and before he was formally diagnosed with autism.  We realized early that we cannot cure our son.  Isaac has autism.  It is pervasive and affects every piece of who he is.  I can't cure him.  I can accept him as my son.  I can celebrate him.  I can love him.  Sometimes, even those things are difficult but they are what I am called to do as Isaac's mama.

Isaac is not at the center of our family.  We are a circle.  We are a team.  No one person's needs come first.  The family bends and flexes to meet the needs that are present in love.

Does that mean that I have given up on my son?  Not on your life!  Does that mean I do not love him? NO!  Does that mean that I will not advocate for him?  Not even close!

I accept Isaac for who he is...autism and all.  I love him.  I have fought tooth and nail for him throughout his life.  I have argued, reasoned, researched, wept over and defended Isaac.  I will never stop advocating for him.

We have evaluated every new thing presented to us and we put it to the PITB test.  Will this new therapy be too much of a pain in the behind?  Will it steal more sanity than it will create?  How much stress will it load upon Isaac and the rest of us and for what actual benefit?  If the benefit outweighs the PITB, we will implement it.  If we fear that he or we will be crushed under the additional weight of the new proposal, we pass it by.  Isaac is more important than that.  Our family structure and preservation is more dear.

Our PITB Factor test has led us down many untrod paths.  We gave Isaac the behavioral hours we could afford and no more.  I have a background in education and so learned the tenants of behaviorism, ABA, and a slew of other educational based practices used for children with autism.  We tend to shape our child rearing strategies around a lot of those premises.  Isaac is involved with speech, physical and occupational therapies.  We are faithful about keeping dental, orthopedic, psychiatric and other general medical and therapeutic appointments.  If new information surfaces that makes sense for Isaac and for our family, we are all over it.

Sometimes, we wander into something by accident that is of more help than anything we could have researched on our own.  We discovered that Isaac could hike.  We further discovered that he liked it.  We all did.  Hiking was perhaps the best accidental discovery we have ever made for Isaac.  He is so visual in his processing that the defined trail and trail markers are perfectly fitted to his world view.  He is outside so no one needs to try to make him be quiet.  If he makes noise, the snakes stay away and I am a happy happy mama.  Isaac loves that he is continually progressing, exploring, seeing new sights.  He has a get to the end of the trail.  He beams when he is finished.  He is rewarded with accomplishment.  His general response "Yea! We did it!"  Then he looks to me as any teen aged boy would and asks for a snack.

My advice... which may be worthless but it is that it may be helpful to provide new information to families dealing with special needs....if you offer it in love and if you understand that the family has every right not to pursue the therapy or treatment you are suggesting.

Mostly, families love their children more than anyone else ever can.  Mostly, families have a much greater context for their child with special needs than anyone ever will.  It is another thing if you know that inaction will result in real harm to the child.  Be careful with that though.  Not agreeing with you or not sharing your world view is not tantamount to harmful behavior towards a child.  You may not agree with the family's decision.  That's ok.  You have shared and unless you know that the child is coming to real harm without action...sharing and loving and offering your hand to help and to hold is enough.  You don't have to fix it. You can't.  Just love us through.

No comments:

Post a Comment