Tuesday, February 9, 2010

No Mr. Frost, I Want To Take The Well Traveled Path!!


There is a machine waiting, an army of SLPs, OTs and PTs, BCBAs and a thousand different acronyms waiting. They want to help you yes, but make no mistake they are selling you something too. The business of autism is greedy, just ask any mom that has put her child on any number of diets also barring fancy acronyms, or filled their cabinets with vitamins minerals, antifungals and the sort. I am not even sure how this machine came about, but my guess is somewhere along the line they offered hope. I know in the beginning I would have done anything to not go through this, to not have my child go through this, and I did everything. I completely blindly handed my son over to the machine. I watch him through glass windows, and video monitors while others played with him, and drilled him, and drilled him. They were all nice people they all wanted to do their job and it helped.... right. Did it help? I ask myself that from time to time. Apparently there are studies that indicate that "early intervention" is definitely making an impact on the lives of those living with autism. Yet, the job rate for those even "mildly" effected with the disorder is around 3%. So, what are we trying to do? What outcome do we want with our kids. What do we want to leave them with, will my son be a success if he can bag groceries, and partially run his own apartment? Is he any less of a success if he cannot?

I question myself from time to time, because I am no longer a "mother warrior" trying to save her son. I am a mom with three sons trying to keep my head above water most of the time. I see Cotton for who he is and for the most part I am largely okay with it, good, bad and everything between. There are "behaviors" that we focus on from time to time because they interfere with daily life or others personal space, but really we are just us. I guess some have referred to it as a "new normal", but I really would not know any different. Life for us has certainly gotten easier but, I wouldn't say that it had because of our time in the machine. Cotton got older, got wiser, and so did his mom. We learn and grow because that is what humans do. I wonder what life will look like in the future. I wonder if we will lament what we did not do or should have done. I wonder if the kids of uber moms will really be better off, or if they will be worse off for never being allowed to be?

Even among mom's with kids on the spectrum there is no agreement. Each side attacking the other, because there is a lot at stake. We have to try our best, and at the same time, we have to live our lives. Eventually you can't go anymore, and you just keep asking yourself is there really a finish line in this parenting thing? Hmmmm... maybe I should call my mom and see what she thinks.....:)

2 comments:

Christine said...

I know what you mean. I think the same thing all the time. Maybe if the early intervention were also aimed at us parents -- like teaching us to relax, accept, laugh and love a bit more -- then I would have appreciated it a bit more. Great post!!

Melissa said...

This is a wonderful post. My son is a bit younger than yours. We knew he had albinism since 3 months old but just recently found out he also is on the autism spectrum (I found you via the NOAH forum). I will be learning a lot from you, hope you don't mind! :-)

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I blog about autism, albinism, my three "active" boys, and life a military family.