My little brother's different...and I love him!

I have always been so much more comfortable writing than speaking to people, because I can speak in an organized, emotionless way through my writing. As a result I often push off saying things that I want to say because, if I don't, it won't make any sense. This is something I've wanted to talk about to a lot of people a lot of times, but have never really had the courage to stand up and say it...until now.

When I was 11 my parents came to us kids with the idea of becoming a foster family. After weeks of babysitting for them to go to training courses, and months of endless inspections and paperwork we were set up. Then began the waiting for a child, or children...but after almost a year of waiting, having a bedroom set up and not being used, the waiting kind of started to get old. My mom had just written into her calendar to call the ministry and say that we were done, that we couldn't do it anymore when the phone rang...that call we had been waiting for for so long had finally come. There was a 10 month old boy waiting to come to a family - just temporarily, for 3 months - and they wanted us to take him. After a long talk that night my parents went to pick him up and bring him home. Because it was only to be a temporary thing there were a lot of changes in our family at that time. My mom became Mama B and my dad, Papa D. We weren't to get to attached to this baby, and he was only a baby that was staying with us for a while...he was not our brother! What a difficult time that was for all of us. Do you know how hard it is not to get attached to a 10 month old, round faced, chubby cheeked baby as he's reaching so many milestones? He took his first steps in our home, celebrated his first birthday, gave smiles, laughs, and eventually hugs. After the first 3 months we were told we'd have him for 3 more...which turned into a few more after that, and after a while his birth mother asked my parents if they would adopt him.

At the age of 2 1/2 this little baby boy became my brother. He already was in my heart long before that, but at this time it became real and official on paper. It was also around this time that, with many trips to the pediatrician he received the diagnoses of ADHD, PDD (Pervasive Developmental Disorder), ODD (Oppositional Defiance Disorder), and OCD (Obsessive Compulsive Disorder). After a few years, around the age of 7 these all got rolled into the 'neat little package' diagnosis of Autism. After countless referrals, tests, and more appointments, when he was 10 he was diagnosed with FASD...Fetal Alcohol Spectrum Disorder.

I have had the opportunity through work these last couple of years to learn so much about FASD, and I have come to understand it to a degree greater than I ever felt possible. With knowledge comes responsibility, and I have become passionate about sharing the information I have learned...and now I'd like to share some of the key points with you. I would like to start off my defining FASD in my own words...

FASD, Fetal Alcohol Spectrum Disorder, encompasses anyone who has been exposed to alcohol prenatally, with effects on the fetus' developing brain. It is an invisible disorder, but one that will affect these babies for the rest of their lives. Depending on the time and amount of the exposure it can present itself in many different ways; physically, emotionally, and developmentally. The initial reaction of many people is to blame the mother of these children, but often there are many people that are at fault in some way for the consumption of this alcohol...but the guilt and shame tends to rest solely on the shoulders of this one woman who needs to face the world each day knowing that a choice she made has made her child's life more difficult. She needs the support, love, and care of those around her, because she will get the looks of judgement from the rest of the world who doesn't take the time to want to know her story and the reasons behind her decision. The child will also need lots of love and support throughout his/her life. His/her brain has not formed properly to one degree or another, and this will be a challenge in each step of their life. More than anything else though they will need your understanding as someone who can help them through a life that is tough enough without these added challenges. Here are some of the things that they, and I, want you to understand...

1: I can't count the number of times I have heard people say things like "You need to control yourself", or "You're old enough now, you can learn how to deal with this", or simply "Why do you act like that?". The sad truth is that often the part of the brain that teaches emotional and physical control is one of the parts affected by the alcohol. This leaves these children impulsive, and lacking control...or even, often, the ability to learn that control. Strategies can be taught, but carefully...and it takes time and patience, it won't happen overnight. Until then just realize that they probably are doing the best they are able to.

2: The way that words are said, and put together to make a sentence, can very much impact how it is received. Taking the time to think about not only what you are saying, but how you are saying it, can make all the difference to a situation. Those extra few seconds won't hurt anyone...and it will often help more than you know. On the flip side of this...going back to the lack of ability to control their thoughts and actions...the things they say are not always what they mean. Take time to investigate the things they say deeper before reacting to it...often it's more of a misunderstanding than anything else.

3: Please realize how important predictability is to these individuals. The slightest change in a schedule, however meaningless to you, can destroy their entire day. I've frequently heard "It's not a big deal!" as a response to someone who has been on the receiving end of a fall out from a schedule change...if it's really not a big deal then why change it in the first place? Because although it may not make sense to you it's a huge deal to them. They need to deal with so much that often predictability is the only stability they can count on...

4: The process that their brain needs to go through to understand what you are telling them is more complex than typical, and so often it will seem like they are ignoring you or purposefully being disrespectful, when really they just are unable to process the information. Patience is so important! And, if they don't understand what you are saying the first time don't just repeat it in the exact same way...try using different words, a different tone, or even different emphasis. A good rule of thumb is "Try different, not harder".

5: Most importantly please understand that all that these children, and adults, living with FASD want is acceptance and love for who they are...so give it to them unconditionally. They didn't ask to be the way they are, and their journey is going to be harder than you could ever fathom, so just do what you can...and be their friend :)


Today when I got home from work I asked my brother how his day went. He said it was good, and upon investigation I saw that both he and his teacher had rated his day as a "3"...the best day he can have, and he had nothing but positive comments from his teacher. I knew from experience though that something wasn't quite right, so I probed a little further. With tears in his eyes he looked at me and began counting out on his hands the names of children who were rude, mean, or disrespectful to him in some way today. After counting off 15 names he looked at me with his sweet innocent eyes and said "I think that covers it all." My heart broke in that moment. How could so many people in one day be so mean...and how could one 12 year old boy with so many difficulties in his life deal with it so well as to hide it from so many people throughout the course of that day?

Sometimes my brother comes off as rude, crude, angry, or harsh. Most of the time when this happens it is as a result of needing to hide his emotions, as a form of control, throughout the day at school until he is in his 'safe place' at home, or somewhere else he is comfortable. It is not always easy to be around him during these moments, and he is often impulsive and very angry at these times...but inside I know he's just scared. He understands that he's different, but is unable at this point to understand why...which leaves him in a state of confusion and hurt when people choose not to be around him. So, as someone who cares about him deeply, I am pleading...please be patient, loving, and understanding. And above all else please don't judge a situation unless you know the details of it...because if you put yourself in the shoes of someone living with FASD, even just for 10 minutes, you'll have such an increase of respect for these individuals, and understand the courage that they need just to face each day.

I love my little brother so much. He inspires me to be a better person, and helps me to see that maybe my problems aren't so bad. I am very proud of the way that he is learning how to be the best person he can be while living with the challenges he does. And I am so glad that I have the chance to have him in my life.

If you have any questions about FASD, Autism, or any other special need please feel free to ask. I love having opportunities to share, and by spreading the word of how we can best help these special children we can create a better world for each of them. There are also some wonderful online resources that are full of information...one of my favourites is the Provincial Outreach Program for Fetal Alcohol Spectrum Disorder (POPFASD). Enjoy learning, and learn to love the journey to help these special people in any small way you can...

Thank you for taking the time to read about something that I care about deeply... Z