Wednesday, 10 May 2017

Managing FASD - article

When I think about my three adopted children who have been diagnosed with Fetal Alcohol Spectrum Disorder, I think about how they absolutely amaze me.  Life is hard for all of us, but for them, the level of work they have to put in to achieve any success is mind-boggling.  And yet, they persevere and keep going forward because they truly believe they can do it.

FASD has become a talking point particularly in the adoption world as research continues to pour in about it.  The province of Ontario has just announced they are giving 26 million dollars over the next four years to support those individuals who live with this permanent brain injury and the people who serve as their external brains.  When our children first came to us, we had real questions as to whether they would be able to trust or love anyone.  We had questions about their ability to speak.  And we had questions as to whether they would ever be healthy.  My younger daughter was eight years old before she showed the ability to read anything.  My oldest daughter was nine before she understood that adults should take care of babies, not eight year olds.  We have seen urologist, pediatricians, psychiatrists, psychologists, ultrasound doctors, audiologists, allergists, and therapists.  And frankly, there are probably more but we have lost count at this point.

But we have found when you ask for help, people will line up.  Our immediate family see and appreciate our children as much as we do.  We know either grandma will be just fine babysitting the children.  Our medical team consists of open minded individuals willing to explore possibilities.  Our educational team are constantly asking us for advice and maintain exactly the same expectations as we do.  Our church friends have been the true friends who have stuck by us even when things get off the rails.  And our FASD network have been huge in providing answers, encouragement and love.  But ultimately, it comes down to us.  The amount of talking my wife and I do with each other is immense.  A typical night for us will include an hour of talking about everything that happened that day and spending time together.  Both my wife and I jealously guard our home and evenings.  We don’t have social media, we only have one phone we answer, and there was only four nights last year where one of us wasn’t home.  Our home is the safe zone where our children and my wife and I decompress on a nightly basis and the reason we can laugh and have fun on a regular basis.
And so we persevere.  My seventeen year old now still needs reminders on how much a loonie is, but can tell you exactly how much a horse weighs by just looking at it.  My sixteen year old needs a digital watch and a reminder the first number is the hour, but can bake a pie the local bakery will sell on its shelf.  My eleven year old is the loudest in the house, but needs everyone else to talk quietly.  And yet, he will spend hours cutting down trees and create firewood for the family.

Managing FASD isn't easy.  We say having FASD isn't a life sentence, it just life.  We have to constantly monitor our children's anxiety levels.  We need routine in every aspects of our life.  We need to surround ourselves with people who get them and appreciate their strengths.  We recognize at some point they will need to live independently and that scares us deeply.  But that is why establishing that solid foundation now is so important.  When you consider that CAS had worked with the last three generations of our children's birth family, we know they have the capacity to finally break the cycle. 

It is fascinating to us how well we complement each other.  Each one of us need the other four for love and support, and we all have unique strengths the family depends on.  That is why we can say with confidence and God’s help that we truly are a forever family.

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