Every Child Deserves a Miss Honey

As a child one of my favorite books was Roald Dahl’s Matilda.  Having dyscalculia, I related to how Matilda was often misunderstood and looked at as “odd” by her family and classmates.  Like Matilda my mind would also wander, I imagined myself on grand adventures, solving problems, being a hero to my friends and defending myself against class bullies. 

In second grade I took my first standardized test. I remember flying through the reading comprehension and writing sections on the first day but once we got to the math portion on the second day, I hit a wall, I was not able to complete the test past the second page.  When we got the results, the discrepancy between reading/comprehension and math reasoning was so large that they made me retake the test three times, and three times I produced the same result.  Not knowing what to do with me, I was placed in the back of the class – with reading material and given worksheets for math so that I could “follow along with the class at my own pace.” Without remediation for math the worksheets made no sense, but I quickly learned that my teachers (grades 2-4) would not bother me if I read quietly.  I didn’t want to do math and when anyone – teacher or my mom – tried to force me to do math problems, I would become angry and resistive. This behavior garnered me the reputation of being oppositional and lazy.

It was not until the 5th grade that I met my Miss Honey.  As accidental luck would have it the fifth-grade class for Indianapolis School #43 was exceptionally small, so small in fact that the school decided to combine 4/5th and 5/6th grade classes.  For a child with undiagnosed dyscalculia this could have been the beginning of the end (children with learning disabilities are three times more likely to drop out of school than those without learning disabilities).  Luckily for me I had a teacher who, for the first time in my elementary school years, saw me.  Mrs. S  noticed that, although I did not and could not perform basic math tasks such as simple addition, fractions, and telling time, I WAS reading books of all varieties, science, non-fictions, history, and lots of them.  In the two years between testing and entering 5th grade my reading and comprehension skills had only increased. It was not uncommon for me to raid my mother’s bookshelf and I frequently asked her to check adult books from the library so that I could read.  Like Matilda’s Miss Honey, my 5th grade teacher began talking to me during break times, we often had lunch together where we would talk, I also stayed after to school with her where she would tutor me – quietly and painfully in math. When she noticed that I could complete some math tasks if I used my fingers to count (which was forbidden for 5th graders) she devised a “safe” way for me to count using my fingers and the shapes of the numbers.  (Safe in that the math teacher would not see me counting with my fingers and give me an “F”.) She gave me extra time for test and arranged for me to take my standardized test in the library un-timed instead of with my classmates.  When the school wanted to move me to a separate behavioral school because I was falling behind and acting out, Mrs. S called my mother and helped her to complete the appropriate steps so that I could attend RTI (Response to Intervention) classes twice a week for math but remain at my home school. This was 1982 a full 8 years before the Americans with Disabilities Act came into effect, so there was no 504 or IEP, there were no guidelines for teaching and accommodating children with learning disabilities. To this day I have no idea how they managed, but Mrs. S– with the help of my mother – managed to come up with a set of accommodations that would see me through middle school, high school and college. Like Miss Honey from Matilida, my Miss Honey became my biggest champion at school, my best interpreter, and my most important guide.  She helped me understand my disability and then helped me find ways to incorporate that knowledge so that I could better navigate through school and through life. It helped me navigate through graduate school, to a Ph.D. and to my current job as a professor. Every child deserves a Miss Honey and we at Mothers on the Frontline would like to give a heartfelt “thank you” to all the Miss Honey’s working to improve the experience of our children at school.

Welcome and Please Excuse the Mess

Years before getting my Ph.D. I worked as an academic counselor in Student Affairs.  It was there that I learned to do what I called a “temperature check” with my students, I would ask every student during their weekly visit whether they were swimming, treading, or barely able to keep their head above water.  It was a good way to assess whether they needed my intervention and if so, what kind of service they needed.  Years later I have found that this is a good way for me to stop and assess my stress levels, check my son’s condition, and the gauge the condition of my family in general.  Well, if asked the question today, I would have to say that I am treading water and barely able to keep my head level.  I am tired and my family (particularly my son) has just come through one of many crises.  We are now trying to clean up/rebuild and recover, which means that my condition, can best be described as precarious.

My son has autism and a mood disorder, and if this weren’t enough – he is sixteen years old.  If you are or have ever parented a teen, then you already know that a sixteen-year-old is a frothy mix of toddler, child and adult.  He is brilliant and remarkably social for a kid with Autism.  He has friends, is maintaining a 3.5 in school, and is independent enough to take public transportation to and from home.  But he only has two gears, and when not on meds his days are spent moving between ecstasy and despair until finally his entire system crashes and he falls into a deep coma-like sleep.  His medication, when he takes it, keeps his moods regulated, and then he only has the sensory, balance, and social effects of his Autism to manage.  But he is sixteen, willful, and craving independence.  Right now, the area where he asserting control is his medication.  Which is perfectly normal and understandable, who doesn’t want to control what goes in and out of their bodies, right?  So, we are trying to ride this wave which places us (me, him and his dad) in this painful push and pull where we constantly struggle between his real desire for independence and his equally real need of our guidance.

At this moment, however, I feel like a fraud.  Who am I to write in the position of advocate when I can’t even convince my own son of to take his meds, and if not his meds then at least eat something decent.  Why would anybody want to hear my story?  After all, I have no happy ending tied up in a neat bow.  We are in the middle of a life long journey and I have no conclusions, only process.  As a mom, I spend most of my time coordinating appointments, negotiating with insurance companies, and conferencing with doctors, therapists, and teachers.  It is hard to think of my mom work as advocacy.  In fact, most of my knowledge of advocacy comes from studying public policy where advocates are described as activist or professionals who work (publicly) on behalf of a cause or group to affect political change.  Merriam Webster defines advocate as “a person who publicly supports or recommends a particular cause or policy.”  Some synonyms for advocate are “champion, supporter, backer, proponent, fighter, and crusader.”   Incidentally, Webster’s definition of mother is “a woman in relation to her child/children,” and mothering is “bringing up a child with care and affection.”  Nowhere in these vague definitions of mother/mothering are the words championing, supporting, or crusading, but this is nevertheless what we do.  If you have a child with a mental illness or disability caring, nurturing, championing, supporting and crusading is what you are almost always doing.   If you ask my son, I am his biggest supporter and worst enemy.  I did mention he is sixteen, right?

At Mother’s on The Frontline we want to enhance the notion of what it means to be an advocate.  If you are a mom and you are negotiating your child’s 504/IEP, then you are an advocate.  If you are sharing your story with and supporting other mothers of children with mental illness and disabilities, you are an advocate.  When you coordinate a plan between the psychiatrist, counselor, and coach so that your child can participate in a sport (or activity), you are an advocate.  We want to know about your process, how you survive, thrive, how you fall and get up.  Personally, I have learned as much if not more from the moms who talk candidly about their experiences raising a child with mental illness than I have from pediatric sites, cookbooks on diet/nutrition, and the pamphlets that litter doctor’s offices.  It is our goal that this site be both resource and refuge.  A place where you come to share as well as learn.  Here at Mothers on the Frontline, we recognize your mothering as advocacy and your story as valuable.  We want to hear from you.  Whether you are swimming along, treading in place, or barely able to keep your head above water, we believe your voice and your experience matters.