Who Do You Trust?

From the time my son was diagnosed until now, I've made a lot of mistakes.  The biggest ones involve placing my trust in people to do what is best for Dylan without asking enough questions.

As parents - even though we would never admit to it, I think we can get into the mindset that teachers, therapists, school administrators and doctors know more about what is best for our child.  After all, they have years of experience and an education specializing in this field.  The reality is that these professionals are human.  They forget things.  They mess up.  They get it wrong.  And sometimes, they just get lazy.

As a nurse, I worked with the elderly.  Everything I learned about non-geriatric nursing specialties was gone from my memory within a short period of time because I never used that information on a daily basis.  As professionals, we are trained in a variety of areas - but we are still human.  The information that is not routinely used is lost in our memory somewhere.

The same is true with any specialty.  Doctors, therapists, teachers are all expected to have immediate and completely accurate recall of what each patient/student needs.  They don't.  As a nursing student, I can't tell you how many times doctors would ask for my input and advice on a patient.  A nursing student barely knows her behind from a hole in the wall so the notion that these doctors (who before this experience held god-like esteem in my eyes) were asking for my advice was unsettling to say the least.  This experience taught me how essential it is to advocate for ourselves and for our children in every aspect of life.  We need to be informed and be sure that those working with our kids are on the right track. The notion that one person holds all the answers in any field by virtue of their education is ridiculous.

Even if a person has expertise in autism, they may not have any experience with children of a particular age or developmental stage.  And even if they do, they will never have the motivation we have.  I have found that even people with the best credentials still exist in an "employee" mindset.  They want direction for your child and expect you to give it.  If you don't, they may not say anything, but they often don't take the reigns.  The result can be a stalled out effort due to lack of direction.

I share this because I learned this lesson the hard way.  I was naive.  I started out blindly trusting everyone, until I noticed a lack of effort in one particular person.  In my inexperience, I attributed it to her alone.  Then I saw it in someone else.  Then another person.  Until finally I realized that we had a general lack of motivation and direction everywhere we turned.  It wasn't one person.  It was a reality that applied to every field. I believe this is the case because no two special needs kids are exactly the same, so professionals are never 100% sure which path would be best for each child.  Things they successfully implemented on other kids in the past may not work at all for this child.  So they look to us for input.  For direction.  And even sometimes for motivation.  If we don't give it, then they tend to approach the child as if feeling their way through the dark.  This child is unfamiliar to them and so they tend to apply their efforts conservatively, which means results inevitably take longer.

Imagine how draining it would be to work with special needs kids your whole life.  To put forth extraordinary effort and see tiny baby steps of progress.  And then the kids move up a grade and you never fully see the fruits of your labor.  I'm not excusing this lack of enthusiasm that exists in this field, I'm just saying it is understandable.  When I as a parent finally got this, only then was I sufficiently motivated to take the reigns and let go of blind trust.

The folks that I have working with my son right now are mostly very caring and competent people.  But they are missing an essential ingredient that only a parent has.  An undying passion for seeing this child reach their maximum potential.  Not that they don't want to see it, but they will always lack the fire and motivation for it that only a parent has.

If our child ends up as an adult unable to care for themselves when they might've had a different outcome if they were properly directed at a young age, the full burden of responsibility for that never lies with one teacher or one therapist.  They do their job for a season and then pass our child on to the next person.

But it does lie with us.

Having that possibility on our shoulders motivates us to a level others will never arrive at.  And it is that motivation that will heal our kids.  Not letters after a name or years of experience.

In the course of helping my son recover from autism, I have encountered professionals who are lazy, misinformed, overworked and inexperienced.  There are some good guys out there, but even they lack the passion required to make the best decisions for our particular child.

If you have a home program for your child, remember that even if you have therapists with years of experience successfully mainstreaming kids into regular classrooms, the results they have seen were never due to their efforts alone.  Somewhere behind the scenes there is a warrior mom.  And it has been my experience that even the best professionals are still looking to us as parents for direction.  If we just place our child in their hands and trust them, we will not have the same results.  If we involve ourselves in the program as a participant only, we are leaving at the reigns a person who is not as invested in our childs success.

So does that mean we are always right?  Not exactly.  I believe God provides us with the tools we need to successfully accomplish every task He gives us.  But if I have the tools, I still need to learn how to use them.  I'm not going to wake up in the morning knowing what is best for my son.  I need to do the work.  Read.  Research.  Ask questions.  Read some more.  Test things out at home.  Keep accurate records of behaviors, GI issues, sensory issues, etc.  What I'm saying is that we will always be right if we put forth the effort.  Because God has entrusted us with this child and He will guide us if we take the time to acquire the information and then listen to our gut.

As I share this, my fathers words return to my mind.  As a young, strong-willed child was always telling me how important it is to have a teachable spirit.  He said that we can learn something from every person and experience if we are open to it.  Part of our jobs as advocates for our child is to listen to the professionals.  To take in everything they say and try to learn from it.  But I also believe that we are required to go and research their theories to see if they are accurate before giving the green light. 

So who do we trust?

For me, the answer to that is: science, research, God and our own gut.  Drawing from the lessons I have learned from mistakes I have made with my own child I believe that the best mindset is to trust these things and place everyone else on permanent probation.  I will never let go of the reigns with any of them.  I will always ask questions and push the status quo.  Because not doing so in the past has cost my son valuable weeks and months early on and I am not about to risk making that same mistake!