APPENDIX C: ISAIAH’S BRIEF

My name is Isaiah. I’m 17 years old in grade 11.

At the age of 4½ months, I was placed in foster care. Knowing she could not provide a stable home, my birth mother asked my foster mom to adopt me.

My mom tells me I was a handful. I was extremely active where she could not turn her back on me even briefly. Fearless, hyperactive, unstoppable likened to the “energizer bunny”, inquisitive to a point where she had to screw down all the heating vents in our home. She had to put locks on all doors, high enough I couldn’t reach even with chairs because apparently I was good at improvising even at this young age. I would climb up the kitchen door knobs and I could undo kitchen and drawer locks. Once I stuck a coin between the two prongs of a plug causing a small fire. If you look up the word frustration in the dictionary, you’ll see my picture.

I am not like other children. Learning not to repeat the same things constantly is a life skill to this day I have not been able to grasp. Discipline was and still is of little consequence to me. You see I have what is called FASD. My birth mom drank while she was pregnant, giving me brain damage and a life time of challenges.

I was 8 years old and didn’t quite understand what FASD was, but knew it had to do with the fact my mom drank alcohol. As the years progressed, my job being a kid was to go to school. Going there is a living hell for someone who has FASD. This disorder is invisible to the naked eye and clearly misunderstood. This is my fifth year at the same school and they still don’t get me.

My peers observe me like a National Geographic Documentary on animals. I listen to them whispering things about me loud enough for me to hear but not the teachers. I have been taught some lessons at the hands of my peers. I realize they play one way when the teachers are looking and another way when they are not. I unfortunately, don’t know the difference.

I have been teaching my teachers. The roles have been reversed. You have those teachers who just don’t get you and are so frustrated, they’re scrambling half way through the year looking for their lost marbles. Sometimes I have great teachers who take the time to ask me questions and try to teach to my strengths. These are the true heroes and restore my faith in humanity. I can safely say if it weren’t for a few outstanding teachers, I wouldn’t be able to face another day at school.

School is very exhausting for someone who has a disability. Those of us, who have learning disabilities, have to work harder to learn what others find easier. Hence the accommodations, which are put in place to level the playing field equal to that of non-disabled or neuro-typical classmates.

I am continually asked questions to ensure I’m paying attention. At a very young age I could not sit through school without something to fidget with. It was in grade 4 when I started to pull out my eyelashes during class. The teachers would take everything away that I was fiddling with because they thought I wasn’t paying attention. This continued until all my eyelashes were gone I then started on my hair. By grade 7 my most favorite teacher of all time, took an interest in me, he started to test me and asked all kinds of questions. Wow, this guy was really neat and interested in me. He was the one that encouraged the use of fidgets. He would test me verbally, which by the way is one of my strengths.

The following year a teacher would gear her math questions to my outside school interests. She would draw a sling shot instead of a triangle and then get me to measure the angles to test me. My best marks in school come from the teachers who have the most patience and take an interest in me. I was also seeing a psychologist who understood FASD and she helped me stop pulling my eyelashes out.

I have ADHD like symptoms. It’s not that I can’t pay attention; I pay attention to everything around me. That’s why it’s so distracting.

I have difficulty with writing things down or copying from the board so in my IEP, I am allowed teacher notes. This seemed to be problematic for some teachers. When my mom wrote a note to one of my teachers about this he came up to me one day and said “Why don’t you ask one of your friends for a copy of their notes”. I had to tell him I had no friends, in front of the whole class. Awkward! I’m not sure he knew what to say to that. This teacher would stand in front of the class and just talk and talk like he was teaching philosophy. We were to be taking notes after notes. This is where I have a disability called working memory. It’s holding on to a piece of information long enough to be able to write it down while the teacher speaks. Yikes! I can only follow one instruction at a time and teachers expected me to write a book.

I have sensory problems with sight, sound, smells, and touch, so the atmosphere in a gym with hundreds of students overwhelms me to the point where I simply pass out and wake up on the ground. It’s a great way to get a holiday but I wouldn’t recommend it.

I gave up my locker. I prefer to wear my backpack around the school, avoiding the sounds and sight of all the students in the hallway which I find overwhelming. Besides, the weight of my backpack also helps me feel secure like a weighted vest. I avoid many field trips offered because of anxiety and how I feel in wide open areas, with lots of people and unfamiliar places.

In church the sound of a singer’s voice during the hymns is amplified for the geriatric people, however, it’s like taking a drill press to my ears. Sometimes the sound of voices like that science teacher I had in grade 8, nails on a blackboard to me. I wear headphones as part of my attire to drown out external sounds to help me concentrate on school work.

Often when walking down school corridors, I would smell the same perfume my grandma wore and I’d perk up wondering why grandma was there? In elementary school, the smell of my resource teacher’s perfume was so pungent to me; I could only concentrate on the burn of my poor nostrils thinking I had accidently snorted sulphuric acid. Forget about, focussing on what she was trying to teach me!

I take things literally, often getting into trouble for doing what was asked. Once, a frustrated teacher said “Isaiah, please hold your tongue”. I obliged and was immediately sent to the office.

Often at supper, my father would tell me to eat properly. However, he never defined properly. This became problematic until my mother clued into the fact I didn’t understand what he meant by properly. What he was inferring, was to slow down and take my time chewing. It was becoming obvious to me everybody thinks I can read their mind.

We are concrete people. We have problems with abstract thinking. The time is flying by. Where, I can’t see it. My grade 9 gym teacher told me to grow a thicker skin; I thought mine was see through.

Memory problems are also an annoyance. I am sure I have spent half my life looking for things I have lost. I keep reminding my mother it is for this reason I do not need exercise. Teachers say it’s convenient, especially when I was to hand in assignments.

We are 10 second people living in a one second world, a frustration for most people around me because they are waiting for a reply while I’m still processing the question. They just get pissed off at me and think I’m ignoring them. Like all those instructions at school coming at me at once! Overwhelming and I shut down. Too much talk is disastrous. One thing at a time please!

I have executive dysfunction. So my brain can’t work like your brain and manage my every thought. I still have not been able to organize myself, let alone school work. Most of you here are able to see the future and make decisions based on learned generalized concepts where I cannot. It was once mentioned to my mother how a lot of us who have FASD lack empathy. It’s not that we don’t have empathy, it’s because we are not able to feel or visualize what others are experiencing. Feelings are abstract, so when something happens to another person, where most of you are sad or distraught and can feel what people may be experiencing, I won’t be displaying that same emotion. I’m not the person going through it therefore I am unable to generalize that learned concept to other things like most of you.

Having FASD, we are known to perseverate or get stuck. Well I got stuck on a texting relationship with a girl who consumed my every thought, every hour of my life. My thirst for a relationship like my neuro-typical peers, took over my life. I have poor coping skills and I tend to live in the moment so you can imagine when this relationship abruptly came to a halt. Not being able to cope, my thoughts turned to suicide. I reached out to social media. Soon police were knocking on our door and a few trips to CHEO ensued. CHEO was not able to help and only prevented me from doing anything while I was there for the 4 or 5 hours. The real help came from my mom who took many hours of talking and keeping me busy against my will and a counsellor from the Wabano Centre. Eventually my appointment for a medication consult with a psychiatrist arrived and life became more bearable for me.

I have talked about my deficits but I do possess many strengths. I am very computer savvy. My highest mark was woodworking where I made a tool box and bedside table. I can put together furniture and helped my mom build a 4 foot by 6 foot rabbit cage for my Flemish Giant Rabbit, Jack who is the size of a medium dog. I’m a medic and often put my dad back together because he walks into things or scrapes himself often. I help teachers with words they are searching for during class. I am quite witty and make my teachers laugh. Right now I’m taking auto mechanics and love it. I have a great auto mechanics teacher who is so laid back and I absolutely love his class. I enjoy welding and my teacher is showing me how to do so. He is even willing to give up his lunch time for me. I love chemistry and do as many experiments my scared parents will allow. I love fishing. I can make cookies and cakes but my executive dysfunction prevents me from cleaning up.

It has been the hardest year yet on me. As I get older society’s expectations of me climb. It is very exhausting to be on guard every minute. Try not to be inappropriate, impulsive, reactive and not be disrespectful. This is so difficult for me and sometimes downright impossible. Being a concrete person I cannot see this code of conduct between student and teacher. Just because the teacher is condescending to you, you cannot be condescending back, because that means you are being disrespectful. How does that make sense? I cannot control this. This is what my mom calls emotion mirror. If teachers and people around me stay calm, I stay calm, if you talk to me with respect I respond with respect. Behaviours are symptoms; environments need to change because my brain can’t.

Having a loving, caring, committed, knowledgeable family, advocate on my behalf to the schools, doctors and police are essential to keeping me safe. Having doctors tell women to stop drinking and the reason is detrimental to limit the incidence of FASD. You see, I didn’t have a choice, but now I live with the consequence. Perhaps more women will stop if the message is “don’t drink; you are causing permanent brain damage to your unborn child”. I know if this message reaches pregnant women most won’t take that drink. To not tell them, is negligent to us, the affected, living this life full of challenges in an ignorant society.

It is a real struggle for people to understand just how vast the symptoms are and how they affect each one of us differently.

Our first hurdle is within our own families to understand us. Why we do what we do and then, help us get that important diagnosis. I don’t blame my mother, nor should anyone, as I know mothers do not intentionally want to cause harm. 50% of women don’t even know they are pregnant and may have likely consumed alcoholic beverages without knowledge of their pregnancy.

We need to speak out about this disorder, so the stigma against mothers is dropped, allowing them to come forward without shame or guilt.

Our second challenge is educating society. We are struggling to fit in because nobody understands our uniqueness. School, teachers and peers are very ignorant. This causes us great stress which we don’t handle well and it makes our lives more difficult. I wish at times, I could draw a wheelchair on my forehead, allowing people to understand I have a disability even though at first glance it may not appear to be the case.

My goal from about age 14 has been to speak up and raise awareness of this disorder, so that teachers and schools can get on board and make it easier for us to succeed with as little mental exhaustion as possible. Spreading awareness gets rid of stigmas and educates people. This is my goal.

Thank you for listening.