Thursday, October 13, 2011

The hardest thing I have done

I wrote this blog awhile ago and then lost it somewhere in cyberworld. I thought it was God's way of telling me it wasn't time to share. But once again I feel it is. I think this time I am a little more gentle though , as I am not in the middle of frustrations
As I share this,  my point is not for you to  judge me, but to understand not only me but maybe others who are in this situation. Not everyone will feel the same way as I do about it, but I can guarantee all who are dealing with what I am going to share, have struggled in one way or another.

As most of you know we adopted a child with Fetal Alcohol Spectrum disorder  (FASD). This is a term most people have heard by now, but are unaware of  how it affects a child. It is one of the leading reasons for mental retardation in Canada. I am not going to use this platform to share my views on drinking while pregnant or even educate you about it. I am just sharing from a personal point of view. Even as a foster parent I didn't really know what it was, I was educated about it, but until you are living it, you have no idea. And each situation looks different. Each child has different issues. Some are high functioning, others are not. We are the latter.

I always thought that I would never be able to deal with a special needs child. Obviously God thought different.  This is probably the hardest thing I have ever done in my life. It has brought out the ugliest side of me at some points, but has also made me grow as a person, as a mom. Not as fast as i would like and more often I see only the ugly side.
It is something that I often think "what did I get myself into?" and "when will this ever end"? sadly it won't end. There is no cure for FASD. There is no cure for brain damage.
I find it so hard to separate the child from the FAS. when she does things I can't sit back and say , oh thats because she has FAS and can't think of cause and effect, or consequences.
It would be easier if my child was in a wheelchair. I dont' mean life would be easier , I just mean that I think i could see the disability and would be able to seperate them easier.
Even for the community it is difficult for them to see that my daughter as disabled. Even when I try to explain it, they dont' understand. It sometimes gets boiled down to "parenting skills or lack there of" .
people will say "well just tell her that she can't do (insert behaviour here)"
I can tell her until I am blue in the face, it won't change anything.
I often feel I was forced into adopting her and wonder what life would be like if I didnt' adopt her. (here is where you are not allowed to judge me) The government told us either adopt her or we will find someone who will. We loved her so much and didnt' want to lose her, but wanted to just give her a forever home without adopting her. I sometimes look back and wish I would have called their bluff, but I was too young as a foster parent . i also know that it would not have been in the childs best interest either. I think she would be bumped from home to home and would have only made it even more difficult for her.
The pressures of raising a special needs child has caused a lot of strain on our marriage and our family life. We had hoped at this point in our life that  we would have more freedom.
Instead we have a child who is almost a teen but functions as a toddler. She has had two year old behaviours for 11 years now. The only difference is she is in a 12 year old body so can get into more things.
We committed to her for life but when you make that decision with kids you plan on them moving out and living independantly. That will not be an option for her. She will never live independantly. I know that there are group homes that we can put her in when she is an adult, but I am sure it is not as easy as that.

Bill and I had to do a stress test and I said after I completed it, that one of the questions should be "do you have a special needs child"?
This is not something you get used to. At least I don't. I get more and more frustrated and tired as the years go on.

I often wonder what I would tell someone who wanted to adopt an FASD child. As i mentioned each situation is different and you don't always know what the future will bring when dealing with FAS. I wonder what choice I would have made if I could peek into the future. Maybe its a good thing that I didn't have that glimpse into the future. its like the song from Garth Brooks says

And now I'm glad I didn't know
The way it all would end the way it all would go
Our lives are better left to chance
I could have missed the pain
But I'd have had to miss the dance

The dance is this home is often like a mosh pit but we are working on it becoming a smooth waltz.


  1. Raising a child with FASD is more complicated, difficult, and sad than anything that you can explain to someone who hasn't done it. Even people who understand the theory of it well (like social workers), cannot understand what it is like to live it, to not be able to light candles at birthdays because you can't keep matches or lighters anywhere in the house, to have a child that climbs onto the roof repeatedly with no concept of the potential danger, to have others think that you are being overprotective because you have to be careful about your almost ten year old running out into traffic.

    Anyway, I appreciate your honesty. I am nervous about going into the teen years and adding hormones into the mix. I can only imagine.

    I could also relate so well to the pain that goes with your child not being invited to parties and such and with wishing that it was a disability that carried a neon sign with it so that others wouldn't judge her and me.

    I hope that tomorrow is a day that the blessings outweigh the heartache and frustration in your house. Can hardly wait until we drive to Calgary so that we can get in a really good visit. It will be great to talk to someone who truly "gets" it.

  2. your view is accurate, karen. i have 2 children with disabilities - one disability is visible (a wheelchair user), the other is invisible (ADHD & tourettes). the world is much more understanding, gentle and supportive of the visible disability. the invisible one illicits judgement, criticism, and a general 'smarten up and try harder' attitude.

    i knew a woman who ran a program for preschoolers with multiple disabilities. after several years as their teacher she gave birth to her own child with multiple disabilities. when he was about 3 yrs old i asked her, 'when you were a teacher of kids like marty, did you really understand what it was like for their families?' she replied, 'i'm still ashamed of how i judged them, and how unreasonable my expectations were. what i know now is that if you can put your coat on and go home at the end of the day, you can NOT understand.'

    karen, sharla, may God bless you and all those parents who commit to children who cannot reciprocate in kind. "one day, this day", is all He asks of you, and i know His provision will be sufficient for that task.

  3. Thank you Bobbi

    you would certainly see the difference with having your children. I am sure your daughter gets more support and understanding.