By @FASD_Mum and @FASD_Dad
Well, here we are. We have survived this year together. We didn’t know at the beginning how this was going to work. You have never taught a child with a diagnosis like mine – Fetal Alcohol Syndrome and ADHD. Which of course doesn’t mean you have not had students like me in your class. Statistically Fetal Alcohol Spectrum Disorders are as prevalent as autism. But that is a whole ‘nother story, as they say.
An entire year has gone by since we started this adventure. I have turned up nearly every single day. I have walked the crowded halls to the sound of bells that make my head split. I have navigated the maze of my schedule – with more than 18 classrooms and teachers. I have braved noisy lunchrooms with their smelly foods and intimidating social circles. I have put my hand up time and time again in your class. I have smiled when you have said hello. I have tried to find the answers you were seeking. I have worn my school blazer with pride. I have trained myself to try to sit in chairs several sizes too big for me. I have carried my backpack through each and every day.
Some mornings, I was so anxious about school that I refused to get dressed. I became so agitated I screamed and threw things. I couldn’t find the words to tell my parents how confused I was by the tests, how upset I was by that detentions, how bewildering I found it because I didn’t understand what you were saying. How sad it makes me that I don’t get to hang out with my friends after school like the other kids do.
I have brain damage that happened before I even drew a breath because alcohol crossed the placenta when I was in my birth mother’s womb. My neural networks were damaged. The different parts of my brain have trouble communicating. I have trouble accessing memories. Abstract thoughts and concepts are really hard for me as my executive functions are compromised. My brain processes things more slowly – quite often I may only be hearing every third word you say. If you put two instructions in one sentence, I will likely fail to hear both. If I don’t see things, touch things, absorb what you are telling me in some other way I may miss your main points. I know I am not understanding things in the same ways the other kids do, that’s why I get confused and despondent. I have an aide who helps me. She is a great support for me. But she doesn’t know the subjects the way you do. I am supposed to be in the front of the room by you. I am supposed to have one on one with you too. Some of you do this. Some of you don’t. I get it that every teacher has their own stresses and demands. I know there are hundreds of students that depend on you. But right now, this note is about me.
I received my end of year assessment, but my Mum and Dad won’t let me read it. Mum nearly cried when she read it. Which is too bad, since there is so much in there to celebrate. They want me to see all the positive comments. Some of you wrote I have “worked well.” I am “enthusiastic” and “confident.” I have had “lessons of absolute brilliance” (Mum and Dad say thank you for that one, that also made Mum cry in a different way). I have been “superb” in some lessons. I am “gaining confidence” and I have “really enjoyed some topics.” “With significant support” I have “created successful outcomes in a range of areas.” For a kid who sometimes cannot face going out the door, these comments show how hard I try and how I can succeed when I get to school. My parents know this was possible due to hard work by teachers and especially the special needs team who are the heroes of my story. None of this happens by accident. We all feel very, very lucky and privileged to have so many great people helping me access mainstream education.
But then there are the buts. And that is why Mum and Dad won’t let me see the paper. Not all of you, but most of you have included comments like he “does not appear to be able to remain focused for more than five minutes” and “he needs constant support on a one to one basis to keep him focused” and “he needs to be constantly reminded to stay on task.” Several of you have noted that when I lose focus it can lead to “disruptive behaviour” and at times my behaviour has been “inappropriate” and that I “need to understand this.” My behaviour can be “silly and distracting to other students at times.” You tell me with “continued effort on focus” you are sure I could achieve. But when you removed my support for assessments, I “failed to gain the marks required to achieve a grade.” You note that I enjoy the “practical aspects” of a lesson, but quickly lose interest in the “theory.”
The thing is, we know I have trouble focusing. That is due to the physical disability in the way my brain is structured. If I were blind, you would not write that I should try harder to read. My need for support and my difficulty staying focused is directly related to how my brain is wired, and has nothing whatsoever to do with the effort I put into my school days. There is no need to write this on my report and it’s really not helpful when you give me low grades for effort. How do you think that might make me feel, when it is just not true? Can you not imagine that for me, just being in school every day is such an enormous effort that when I go home I often fall apart? Can you not imagine the immense effort it takes for for me to just sit still trying to take in what you are saying, especially if you have not had the time to give me some key words or some visuals or word maps or break down the theme of the class into very small steps for me to follow, or any of the other suggestions from the specialists. Don’t you see that sitting and concentrating in each lesson takes more effort for me than a top student puts into his or her day?
And about those behaviors – yes, there are times when I become overstimulated and dysregulated. But these times don’t happen because I am being willfully naughty. I am not trying to frustrate or annoy you. A detention can’t change my behavior. My brain is overloaded and can no longer cope. I need to go somewhere to calmer for a little while to allow my brain to reset.
So, yes, I do require “continuous support” to “achieve lesson objectives.” We know that. You don’t need to write it on my assessment. I will always, during my entire life, need support. The format of that support will change as I mature. We have great hopes for using technology better to keep me on task, to help me focus, to aid me in those areas of weakness like mental maths and time keeping. I will always put greater demands on you as a teacher than most other kids. In our inclusive educational system, I am entitled to access the curriculum in the ways spelled out for me by the specialists. I am entitled to the accommodations, scaffolding and support that directly relates to my disability. Those are the things I need to succeed.
I know you are busy. I know the powers that be are putting more and more demands on you and that through no fault of your own you are being forced to teach to national tests in new are more harrowing ways. I know a student like me makes it harder for you to work with the new inflexible regime. I know you are a teacher because you do care, because you are motivated by a love of a subject and a love of sharing knowledge. I know I may not be able to share the intricacies of your subject matter with you in all the nuances you hope a student might absorb. But I can make correlations. I can access things from a roundabout direction. I will learn in my own way, especially using the tools the experts provide, and I will sometimes surprise and please you. I can even excel in some areas that favor the music, arts, physical movement and strength. I am functioning at an emotional age about half that of my peers. While I am gaining maturity more slowly, things will even out for me in my mid-20s. We just have to keep me in a positive frame of mind through these hellish teen years that are to come.
You can help by continuing to see the me beyond the brain damage.. I am a kid who tries hard every day – even if all you see is me fiddling in my pencil case, I am trying, trying, trying to organize myself even though I don’t really get what that means. I am a kid who actually knows more than your tests will ever be able to elicit from me, and that is okay. Just don’t underestimate me. And don’t, please don’t, ever again tell me I am not making an effort. I am trying so hard that when I get home I often fall apart. I cannot simply try harder and magically overcome my disability. Mum and Dad and I are working to learn techniques and skills to manage, so are the special needs team at school. I can eventually become more independent as we put in place supports and scaffolding to make that possible, but I will never be able to work completely alone. With your continued patience and guidance, I will some day be a strong, happy, and contributing member of our society. The suggested supports you put in place to teach me in your classroom, the very process of showing me it is okay to have some visual reminders and to break down tasks into small and manageable chunks – these strategies are as important as the subject matter to me and will allow me to be a successful adult who is not ashamed of the need to explain to people what I need to learn and work to meet our shared goals.
None of us is expecting a whitewash here. We need your professional assessments to see if I am growing and learning. The amazingly wonderful and maybe miraculous thing is, by your accounts, from what you have written, I am. Sprinkled all through this report is enough good news to keep us all skipping through the summer days that are coming.
It’s just that sadly, too few of you seem to “get” me. I am a fighter. I have overcome more than you can imagine in my short lifetime. I have other related physical and sensory issues that are all part of the mix of the damage done to me by in utero exposure to alcohol. I am a pretty remarkable guy. I wonder how many of you have read my full file. I hope if you have me in your class again you will really ‘see’ me. I hope you will reach out to my parents more. They want to help you to help me. They can be allies.
Please understand, I treasure you all. I value teachers and all that you have done for me. I know too often people don’t show the respect for you that you deserve. Our family – we are HUGE fans of teachers and educators and anyone who spends their days surrounded by a thousand faces of the future that will be. We love schools and books and assemblies and new technologies and the way the world opens up to kids who walk through school doors. We are big supporters of a well-rounded education and are so pleased that you still teach the arts and music and drama and PE and that your environment is so upbeat and positive. We know that takes so much time and effort. We sincerely wish you all a very relaxing and happy summer.
And me, I am going to play in the sand and cope as best as I can with all the anxieties and fears of a new routine that is bearing down on me. But I will walk through those doors more confident and capable next year because of all you have done for me this year.
So, thank you.
…the one in the back row who fidgets a lot, the one who one of you said shows signs of ‘brilliance’ at times, the one who happens also to have FASD…