Thursday, July 26, 2012

great expectations

Prior to the adoption of our sons Shel and I were required to attend a two day seminar for parents wishing to adopt through the foster care system. One of the sessions delivered was on children with fetal alcohol. In the process of filling out an application to adopt it is possible to choose whether or not you will be willing to take children with certain disabilities. FASD is one of the "choices" you can make when you fill out the adoption application as being willing to accept or not accept as an option for being matched with a child.

Let's just say that session was "scary"! From the perspective of the foster care and adoption system there is a need to fully disclose what issues parents will face when adopting children with disabilities. The session is put together with all of the worst of the worst stories and to be honest I am surprised we walked out of the room willing to adopt at all. And yet, here we are, many years later with not one, but TWO children with FASD diagnoses.

I wouldn't trade my sons for ANYTHING. We have developed some strategies for dealing with the issues the boys have and as they get older we have to evaluate and re-evaluate these strategies. We "knew" in an intellectual way what we were getting into with the boys, but knowing intellectually knowing and living with it are two completely different horses. We have to take opportunities as often as we can to get training on dealing with FASD. Somedays I feel like such an expert that I could personally write a handbook on how to deal with children and FASD and other days I feel like I am dealing with some freaky two headed purple monsters from another planet.

For the MOST part I would say we do a pretty decent job of it. We have to check and re-check and change up what we do and how we live to accommodate the boys needs and we need to constantly remind ourselves that our boys have brain damage - they simply CANNOT do what other kids do and it is NOT through any choice of their own.

One thing that I can honestly say I never even considered was the stress on US that raising the boys would create. I thought all about them and what their lives might be like, but not about the impact on myself. What the heck? How did I miss that elephant in the room?

I came across an article by Austin Brown about the stress factors parents of autistic kids face. The article is called Hidden Stress: Parental Burdens Caused by Autism and was published on The Triple Helix Online on July 30, 2011. There are many similarities to raising a child with FASD and a child with autism. I believe (though it has not been confirmed by a diagnosis) that one of our boys actually falls on the autism spectrum.

Here is an excerpt from the article by Austin Brown:

“Another cause of emotional distress for parents is the judgment issued by others on their child, and on them as parents [3]. The lack of definitive, visible signs of autism causes outsiders to view autistic children as “normal”. Thus when an outsider sees an autistic child throwing a tantrum in public they pass judgment on the child. Since children are usually a reflection of the parents, this causes stress for the parents because they are being judged as possibly “bad” parents for not controlling their child or allowing them to throw tantrums in public [3]. The judgment of the parents’ job by others causes stress because not only can the parents not control how their child reacts, they also realize that their child cannot really control many of his or her own actions.”

Shel and I do a lot of work on educating the people around us and in the lives of the boys on the effects of FASD. It is SOOO hard for people to understand some things about my boys.

#1. Having FASD does not affect a child's intelligence. My sons are smart, one wickedly so, but his intelligence doesn't mean he is CHOOSING to behave in a certain way. His intelligence and his disability almost work against one another in the expectations people have for him. They think - he's  a smart kid, he must be "playing" his parents. Don't get me wrong. He's a kid. He's five. I'm sure he does get away with things. By and large, however, he is not trying to be bad, or trying to be argumentative, or trying to be obsessed with things.

#2. Here are some things you should avoid saying to us. We think it is better for you to ask questions because we will explain as best we can, but saying these things is hurtful and shows lack of understanding, sometimes denial (depending on how well you know us) and sometimes downright ignorance!.....

It's just a phase.
He looks normal to me.
If you wouldn't ____________ He wouldn't ____________________
Can't you just _____________ ?
Haven't you tried ___________?
They just need more discipline!
He's pulling the wool over your eyes.
I'm glad you are finally doing something about him.
You are making excuse for his behavior by telling him he is FASD.
Why is he still on the bottle?
Why does he still use a soother?

Talk to us before you judge us please. We are working hard to raise these boys right and they are amazing in spite of the challenges they face. Your judgements add more stress to our lives and we need your support, not your judgement!


Teena in Toronto said...

You and Shel are awesome!

The Bumbles said...

Beautiful post written so clearly - thank you for sharing. I think people are afraid to ask for fear of sounding stupid or crass. Reminding them an open dialogue helps keep the stress of judgement out of it is wise of you. How lucky your boys are to have such strong advocates, love and acceptance in their most important place - home.