Wednesday, January 11, 2012

THEY DON’T COME WITH INSTRUCTIONS

 
Being the parent of a child with "special needs" is not that unique. When you think of it, all children are "special" to someone and "needy" for everything. 

I used to say. I thought I understood what “Adverse Background” meant, but as in everything with my children, I was in for one big surprise.

So begins my adventure in learning about (see link)  Fetal Alcohol Spectrum Disorder.
There's a lot of wonderful information available on the web about FASD, but I was so overwhelmed at where to begin. And for once I second guessed my skills as a parent. 

In trying to learn all I could about FASD I read books, attended training programs, joined listservs, met other parents. Yet I still felt I didn’t have the right tools.  

One training in particular, by (see link) Dr. Susan Adubato Ph.D a New Jersey  based specialist on FASD really broke me. I had been using parenting techniques for children with (see link) RAD  (Reactive Attachment Disorder) which is one of the many “labels” my children have been given. (More on “labels” later)  


It was more of a “tough love” approach. Sitting in that training I realized how damaging I was being to my children. I still cringe at the damage I could have caused had I not attended that training.  

Individuals with FASD have many issues, poor memory being one. They may not be able to recall a task they learned the day before. One of my son’s, about 8 at the time could not remember how to tie his shoes. With the RAD parenting I was taught to put the behavior back on the child.

  “Gee, can’t remember how to tie your shoes?”  “Hmmm, maybe when you trip you will!” Imagine how confused my son must have been when the one person he should trust for help was basically making fun of him. Some children can have both disorders and is a mind-game 24/7.  


Secondary disabilities are also very common. I really had to be cautious from that point on with the expectations I set forth for my children.


My “AHA” moment was when I realized my greatest teachers were my children!  They are brilliant teachers. I began paying more attention to the “language” my children were giving me, namely their behavior. Each child responds differently to any situation. 


To make it more exciting, even that at times was not the same. What bothered one child one day is no guarantee it would matter on another day.
 
With their poor memory recall and deficiencies in executive functioning, I had to learn to adjust my expectations of them but still identify goals they could attain. Through tears I had to let go of some of “my” dreams and create new goals that could be achieved. The hardest part is getting the outsiders looking in to understand. 

The most difficult part is it is a “hidden” disability; my kid’s appearances are of average children.  The difference was inside. Their brains were nothing like their peers yet the expectations are the same.  (see link) Teresa Kellerman or “Mother Teresa” as I like to refer to her as, had an article on her extensive (see link) FASD website suggesting cutting the persons chronological age in half and begin skills at that equivalency.  That is worth its weight in gold.  

At the time my older children were floundering and they soon became different little children that could realistically get through a day. We both shed a lot of tears, but we were in this together and I finally felt like I was finding my foundation.  Amazing how changing MY mindset and expectations changed a lot of the challenges I was facing with my children.
 

1 comment:

  1. Beautifully written, Amber! May your words bless many! :)

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