REALLY!

I find myself saying REALLY, not sure to whom, I’m sure no one around me knows either.  I am a wife – REALLY; I am a mom to 6 kid’s – REALLY; I graduated from high school when I was 9 months old – REALLY; and yes, I was born in the 60’s when strobe lights, Jimi Hendix and Janis Joplin were my parents favorite music, so therefore I am a real classic rocker – REALLY.

REALLY, I remember when it became a popular one word sentence a few years ago I hated it. Didn’t make much sense to me then, but it sure does now! 

I am now the mom of 2 young adults 21 & 20, 2 teenagers 17 & 18 – all boys, a beautiful Princess 9 and an angel who got his wings 10 years ago. REALLY.  

I have been married for 23yrs and REALLY he is not a figment of my imagination like my relatives think. He does exist. We assumed when we married that we would not have children, I could not have any and he did not want any. 

After a few years we knew our initial decision was not a wise one. So, we opted to do foster care. An amazing challenge that I realized early on I had a gift for. REALLY.  

We had some beautiful children, most were newborns and toddlers. I had the knack for being able to tolerate a baby with many issues and working with the families. I would like to feel like I made an impact on their lives like they did mine. 99% of them were prenatally exposed to AOD – a term that has taken on a life of its own – Alcohol and Other Drugs. 

Methamphetamine seemed to be the drug of choice, with Marijuana and tobacco.  But, also reported alcohol as a substance of choice – but is not testable. In getting to know most of the parents I worked with most were dual addicts. 

Very few had much support and also have mental health issues. Through our choice to be foster parents we also adopted our six. REALLY.  Not really a big number for most who adopt, I know many who have adopted ten, twelve. REALLY. 

I decided to start sharing our journey because so many people have said I should write a book or do reality tv, REALLY. 

I decided on this format simply because I have ADHD – can’t sit long, really comes in handy with my children and I don’t spend a lot of time at home. REALLY. 

 I work part-time and volunteer in our community. You may have guessed, my children have disabilities. This is something we have chosen not dwell on because it is only a part of who they are. 

They have amazing insight about things most people don’t take the time notice but can spend hours on – some call it perseveration, they feel things and smell things most don’t – some call it Sensory Integration Disorder, they can be fine one minute and screaming at the top of their lungs the next – some see that as a meltdown I see it all as language. REALLY.  

My children have speech, just not always capable of communicating. Because of their disabilities I find myself saying “REALLY!” when they do something for the bazillionth time and I know they will do it a bazillion times more. REALLY. Some call it life in the FASD LANE, I just call it life.  REALLY.

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.