By an Adopt4Life Community parent
We brought J home at 3 weeks of age. He had been living with his paternal great-grandparents, with his biological mother and biological father. They were teenagers and afraid. They ran away, leaving J with his elderly great-grandparents. I am J’s maternal adoptive-grandmother, now mother, as we adopted J soon after he came to live with us. J is now 14 years old. He was a challenging baby, because he would cry constantly and often seemed agitated and restless. My saving grace was that, over time, he was a great sleeper and I would “catch breaks” throughout the day and had much of the evening to myself. Thankfully, his sleeping habits remained solid over the years and even today, as a teenager, he is often in bed relatively early, leaving me some time of peace during the evening. I now know that the blessing of sleep is actually one of the symptoms of J’s Fetal Alcohol Spectrum Disorder (FASD). You see, he has to use his brain 100% more than other youth his age in order to function day to day. Thus, by end of day, he is literally “brain exhausted” and thus falls in to a deep sleep.
This ongoing brain work might, in his future, prevent him from holding a full-time job. He might be able to work part-time, but the mental power it will take will leave him exhausted at the end of day. I have learned, and am continuing to learn on a daily basis, the extent of this permanent, life-long, incurable brain damage that people with FASD experience, as a result of prenatal exposure to alcohol (ETOH). This disorder is 100% preventable. If a mother would not consume alcohol while she is trying to get pregnant or is, in fact, pregnant, FASD would not happen. There is no safe limit. Even one glass of ETOH taken at the wrong time can result in some form of brain and developmental damage.
Please know that I am not blaming a pregnant mother for the outcome of using ETOH. There are a myriad of reasons why a mother may drink ETOH while pregnant. The main reason is that many women, indeed the general population, including primary care physicians, still do not know about FASD and the disastrous effects of ETOH on the unsuspecting fetus. Many women don’t know they are pregnant, sometimes well in to their pregnancies. I have had many women friends who have informed me that their doctor told them, “A glass of wine every now and then during your pregnancy is just fine. Just don’t overdo it.”
Those women, with doctor’s consent, had a few glasses of wine over the nine months. Other women struggle with significant addiction problems and want to stop drinking, but are unable to do so. It’s easy for us to say, they should go to a treatment program then… Well, the reality is that there are long waiting lists for treatment and many women do seek treatment, but sadly, it does not get offered in time. As a woman with infertility issues, I was told that I could not get pregnant, so when I did, I did not know it. I was working a high stress job at the time and I did go to my doctor, complaining of extreme fatigue. My doctor did not consider pregnancy, as we both knew I could not get pregnant, right? No, wrong! We both concluded I was stressed and therefore over-tired. My doctor suggested some time off work, lots of rest and time for me.
My only pregnancy symptom was extreme fatigue. I was almost 4 months pregnant when I found out, and it was not my doctor who figured it out, but one of my wise, older sisters. She got me a drug store pregnancy test and lo and behold. Surprise! I am a well-educated woman and I have worked in the health field for years. It happens, women do not always know they are pregnant. In my case, thankfully, my biological child was born without special needs. However, there is no safe limit and she could have been born with FASD. This is one of the challenging things about FASD, some children are born with FASD when their mother consumed very little ETOH and some children can be born without effects, even if their mother drinks more. We don’t why, as of yet. However, the bottom line is that there is no safe limit. If you know you are pregnant and/or you are actively trying to get pregnant, PLEASE, don’t drink. Don’t drink any ETOH. Your baby’s developing brain is in your hands, literally.
However, I want to stress that what a mother and father don’t need from anyone is judgement. What we need as families is support, care, respect, practical help and a government that takes FASD seriously. This is a community issue. Raising children, youth and adults with FASD costs a lot. September 9th is FASD Awareness Day. I hope that my sharing on this blog helps to raise awareness, but mostly, I hope it will raise compassion, understanding, love, and hope. We are doing a walk in Ottawa, from Parliament Hill to City Hall on September 9, 2018, from 1–4 p.m. Come out, wear your red shoes, and help us to get the word out. Meet us at the flame. Everyone is welcome.
After many years of fighting and advocating for assessment and diagnosis, J was diagnosed with FASD. Although the diagnosis caused me to experience deep feelings of grief and sadness, along with fear and trepidation, the diagnosis also brought me great relief. I finally understood the why of so many issues we have faced over the years. I understood why J would swing in to rages and attack me and my spouse. He would attack with words. He would attack with objects. He would use fists, teeth, feet, cups, plates, fire pokers, knives, hoses—anything within reach. At times, it did feel like I was living in a war zone. At times, I felt very afraid. The behaviors really started when he began school at age 4. Prior to age 4 he was, as noted, a cranky baby or a fussy toddler. He was restless. He often paced around the house, flitting from one toy to another. At the park, outside, running, climbing, jumping, twirling…he was at his best.
Starting from day one of school, all hell broke loose. I have no other words. Literally, all hell broke loose. J screamed, cried, kicked, bit, ran away and hid every school day morning, from the very first day, until about grade 4. He would often run away from school too. He always ran home. At 4 he was able to navigate our community pathway system, as he had been exposed to them when we would walk, almost daily, to the local parks. Sometimes it would take me up to 4 hours to get him physically and psychologically prepared for his school day. We would wake him about 5:30 a.m. or 6 a.m. in order to try to have him ready for the bus by 8:30 a.m. Most mornings we missed the bus and I would drive him to school about 9:30 or 10:30 a.m. I would put him in the car kicking and screaming. He would often lash out, hitting me, punching me or kicking me. He would throw his toys or books, or cup at me.
I did not know what was going on, but I knew something was seriously off-kilter. I took J to the family doctor who said he was a “busy boy”. I asked many times for a referral to CHEO’s out-patient psychiatric department and was told, “No, he’s much too young. Give him time. He is just adjusting to being away from you.” So, I waited and waited and waited, all the time knowing something was not quite right. I would receive telephone calls from the school multiple times, every day. I had to leave work to go get him almost every day, but up to Grade 3, I was getting him at least 3-4 times a week. I was missing work so much that I was fearful I would be let go.
At the beginning of Grade 2 I was becoming desperate. I was physically, mentally, and emotionally exhausted. I was depleted and I sat crying, sobbing at my kitchen table. In desperation, I picked up the phone and dialled CHEO’s outpatient psychiatry office. I explained to the lovely secretary who I was and that J was on their wait list. (I had, somewhere along the way, managed to get my doctor to agree to a referral.) I told her we could not wait any more. I told her I was losing my child, as he was becoming despondent because he knew that “nobody liked him”. He told me daily that all the kids are “afraid of me, mum”. One mother on our street told her boy that J could not come to his birthday party because, “J was going to grow up to be a murderer one day” and this mother explained to her child that she did not want J to murder him.
Well, tell that to a Grade 2 student and see what happens?! The boy told J everything his mother had said and told all the other children on our block. I found out about this as J asked me, “Mum, am I a murderer?” My heart broke in to a million pieces that day. I told the secretary this story. I told her how since this horrible story went out, J was not invited to any birthday party or event on the street or in his class. When we went to our little local park, most times the other parents would leave within 5 minutes of us arriving.J played with me only, all the time. The secretary listened, she let me cry, and then she performed a miracle and got me in for an urgent appointment. Advocating, I have learned, is the most important skill a mum and dad can have. It’s hard to open your heart and soul and be completely vulnerable and dependent on the kindness and understanding of strangers, because that is what it takes to advocate for our children with FASD.
J’s behaviors at school were terrible from the get-go. He would not wait his turn, he would not sit on his spot in circle time, nor his desk when he finally got to Grade 1. He would not share. He would often just crawl under his desk and curl in to a fetal position and refuse to come out until it was time for him to go home. As mentioned, he would often run out of the classroom and as he got a bit older he would run away from school, trying to get back home. Home is the only place he feels safe, even to this day. He would not do any work at all. He would spend hours making paper airplanes. He never became aggressive with his peers or any children at all. He was terribly aggressive toward teachers, vice-principals, principals, and any adult working in the classroom, and he showed no fear toward the school liaison policemen/women. In fact, seeing a person in uniform increased his rage. Why? Because, he lives in fear on a daily basis. Fear produces one of two results: “fight or flight”. J did both, but if he was cornered and could not run, he would fight and he still does. He is fighting because he is terrified. He does not have the words in the moment to help himself. So, in his mind, he is fighting for his life. Think about that—he feels like he is fighting for his life. Imagine living with that fear every day!
He was, at age 4, being restrained at school and at home up to 12–15 times, between both places, on any given day. This was necessary at the time not only to protect ourselves and the home or school property, but to protect J. When J was in a rage, he would not be aware of his body in space at all and he was often hurting himself—banging his head, arms, hands, knees, ankles, elbows etc. At the best of times he had healing bruises, cuts, scrapes, and various wounds on his body. Our home was indeed a war zone. At school his teachers and all staff felt the same way.
It was at the end of Grade 2 that we finally got in to CHEO, and with their help J was accepted in to the Steps for Success Program. This is a one-year program for children with exceptionalities, and the purpose is to assess, determine diagnosis, find appropriate interventions, and then send the child back to his/her home school with a plan in place. It took the team at STEPS two years to determine that J was not just a child with ADHD, as was originally thought. They diagnosed severe anxiety disorder, mild obsessive compulsive disorder, emotional behavioural disorder, learning disabilities (particularly in math, reading and writing), sensory issues, and for a time, they were considering Autism Spectrum Disorder. My response? “O.K. people, how many disorders can one 8 year-old boy have?” It was at this time that I began to push for genetic consultation, as I believed J might be a child with undiagnosed FASD. I was thinking that because, behind the scenes, I had been continuously researching. I was reading books, articles, online information, searching You Tube videos, plugging in key words: “children with rage”, “aggressive children”, “ADHD”, “children without a conscience”, “why do children run away”, “excessive sleep in young children”, etc., you name it, I was looking it up. I had come across FASD in my research travels and as soon as I read about it, I knew, deep in my gut, that this is what we were dealing with.
Initially, when I asked for assessment for FASD I got push-back. The psychiatrist, the doctor, the occupational therapist, the social worker, and the teachers all asked, “What difference will this diagnosis make? It won’t change what we are doing in terms of interventions.” I argued, I unceasingly bugged, pleaded, and pushed, and finally a referral went in to the genetics program at CHEO. You see, knowing would make a difference. It made a difference to me, J’s mother. It changed my perspective. It gave me hope. It gave me energy to fight for my son even more than I had already been fighting. It gave me permission to let go of the underlying guilt and shame that I was not a good mother. J finally got in to see a genetic specialist and she reviewed his file, did all the blood work, all the measuring of the facial features and other areas of his body. J was diagnosed with FASD without facial features in April 201 I was elated that we finally had a clear diagnosis, but I was heartbroken and terrified at the same time. How were we going to move forward and what would J’s life be?
I am not going to say that having the diagnosis made everything easier. It did, however, make everything clearer. I have been researching FASD ever since and I learn something new from J on a daily basis. I have found wonderful support for J. with the Fetal Alcohol Resource Program in Ottawa, at Citizen Advocacy. I have received wonderful support from J.’s psychiatrist at CHEO over the past 5 years. Teachers and educational assistants now have a clearer understanding too. They find ways to make it work for J at school. School remains the most difficult challenge for J. He is headed in to Grade 9 in September and already is fearful, anxious, worried, pacing the floor, telling me, “Mum, I can’t go. I just need to be in Grade 8 for three more years and then I’ll be ready for Grade 9. I’m not ready mum. I’m just like a kid. High school is not for me.” My heart breaks to see his angst, to feel his fear, because it is palpable. Is it all bad then? No, there are more wonderful things to focus on than just the tough times.
Last year, for the first time in his life, J was able to go to a school in a regular classroom and he made it through the year. He did not do the academic work. What he did do was make friends. He ran on the cross country team. This is the first team he has ever participated in, in his whole, short life. He is not a joiner because he is used to rejection. I will brag and let you know, J made regionals. He can run, boy oh boy, can that young man run! This school took J’s obsession with weaponry and made it positive. How? They thought outside of the box and asked J if he could design all the weaponry props for their school play, Mulan. J is fascinated with the history of weapons and armor. His passion for weapons has always had me worried. J told me, “You know mum, I just might grow up to be a costume designer in Hollywood. I make the best weapons and armor!” This was the first time J ever talked about his future. My heart burst.
Having the diagnosis made it clear to me that I can’t do this on my own. I need a support system, not just for J, but for me too. Having the diagnosis helps me to breathe and take one day, well, sometimes, one moment at a time. Knowing what is happening in my child’s brain and how hard he is working every second gives me a deep compassion for him, and this raises my patience level. I am less angry. I am slower to speak. I am quick to listen and respond to J. J needs time to process information. J needs someone to listen, fully, until he can get his words out. Sometimes they come out jumbled. If he is given time, he can organize his thoughts and he is wise beyond his years. His soul is beautiful. His might is quick and bright. His humour is dry and witty and sometimes, I admit, quite inappropriate. He needs to learn. So, if I can offer some advice to those of you raising a child diagnosed with FASD, it would be, fight for diagnosis. Fight for appropriate interventions. Fight for acceptance and inclusion. Fight for respite. Fight for the rights that all of our children, youth and adults with FASD should have, just like you and me, simply because they are human beings with hopes, dreams and futures. Fight for our world to be a better place, they have amazing things to offer our world.
J. is funny. J can build anything and as he says, he makes the best weapons (by the way, they are cardboard). J loves animals and they love him. J can read and write. He learned how to read and write by himself. He would not or could not learn at school in his younger years, so he would go on to videos about writing and he would sit and mimic what they were doing. J loves National Geographic, How It’s Made, Myth Busters, The Nature of Things and watches these shows regularly, thus, he knows a lot about a lot of things. For instance, my older nephew was chopping hot, habanera peppers the other night and he had a reaction. Both his hands became inflamed, red, itchy, etc. My sister and her daughter were not sure what to do. We happened to be visiting and J casually said, “if anyone wants to listen to me, all you have to do is soak his hands in cold milk. That will soothe the inflammation and stop the burning.” We all stopped and wondered how did he have this random information? “Oh”, he said, “I like to look up odd facts. I learned about hot peppers and their reactions and how to take care of it online.” He knows amazing facts about the history of the world, he knows all about D. Trump (God forbid!), and he has his opinions on how to make the world a better place. J can and does learn. He just learns differently. You see, I am learning every day and I learn from him. I am learning that J is one amazing boy. Despite the challenges, the pain, the fear, the angst, what emotion surfaces over and over and literally drowns out all of those other ones is love. I love this boy. This boy loves me. This boy is a loving boy. This boy is worth the fight.
Thanks for reading. Blessings. J’s mother.