Welcome to Day 29 of 99 Days to 9/9. We are almost 1/3 of the way through our journey to FASDay on September 9! Today’s tip may seem like a negative, but it also offers solutions and a glimmer of hope.
The maiden beat these odds. She graduated high school yesterday. It seemed at times like she would be another statistic.
It wasn’t a smooth educational journey. There has been many disrupted school years since I adopted her 11 years ago.
This last semester saw her only attend for one period in order to ensure she completed her last required credit. Last night however, when I went up to take her picture as she received her Certificate, I gave out a whoop whoop! I was so proud of her.
The study noted above did identify eight factors that are “almost universally protective in terms of secondary disabilities.” :
- Living in a stable and nurturing home for over 72% of life;
- Being diagnosed before the age of 6 years;
- Never having experienced violence against oneself;
- Staying in each living situation for an average of more than 2.8 years;
- Experiencing a good quality home (10 or more 12 good qualities) from age 8 to 12 years
- Having applied for and been found eligible for DDD (Division of Developmental Disabilities) services;
- Having a diagnosis of FAS (rather than FAE);
- Having basic needs met for at least 13% of life.
Of the above, the maiden only meets the criteria in 1, 5 and 8. The two she didn’t get, which would have made a significant difference were an earlier diagnosis (she wasn’t diagnosed until 11 years of age) and being eligible for Developmental Disability services (She was 17 when she was given a DD diagnosis).
Let me summarize her school experience:
Grade 2 (when I adopted her) – fantastic teacher that understood her. Lots of challenges but the teacher was supportive.
Grade 3 & 4 – same teacher for both grades who saw the maiden as a trouble-maker, and never saw the disability. She proved this when at the end of Grade 4 during the last day assembly, an award was given to every student in her class, except the maiden. Thank goodness the maiden didn’t figure that out.
Grade 5 – nice teacher, and he tried, but his style was not conducive to her. She also started to fall behind her peers at 11 years old and school became difficult. New principal also believed she should “sit in hall and think about her actions” and CYW told principal it was not her job to assist with hygiene issues. All she was asked to do was remind and supervise.
Grade 6 – changed schools. Fabulous grade 6 teacher and principal. Although difficult year socially, the academic portion was good.
Grade 7 – although the teacher was supportive, she was young, it was a mixed grade 7/8 class, with only 5 girls, the rest boys. Pulled the maiden mid year and she was taught at home.
Grade 8 – she skipped this year as there was no class we could put her in where we thought she’d excel. So she was allowed to go to grade 9 in the Life Skills class half time. Although she did not qualify for Lifeskills class with FASD, there was room in the class and we were able to have her integrated.
Grade 9 – excellent resource teacher and life skills teacher. Maiden did great for most of year. The classes in “mainstream” did not work so well. We had to keep switching them as the expectations were too high for her. Last month before school ended she got caught up in the excitement of the Cops for Cancer event and shaved her head! She never went back.
Grade 10 – Mainstream classes for all four periods. Disastrous year. Pulled out halfway through year and taught at home.
Grade 11 – school tried to integrate her into a special program for high risk students. Disaster. These were students older than her or with a lot of behavioural issues greater than the maiden. Also students worked primarily on their own. Pulled temporarily from school, taught at home, until the school came up with a creative plan to go back (and involved part of the day in life skills again and part of day in resource room). During the spring she received an updated psych assessment which qualified her for the Lifeskills program in grade 12.
Grade 12 – first part of the year a lot of bullying issues and lots of missed days. Tried to keep her in school, but she was at home more than school. Great teacher though who worked hard to keep her in class. That teacher went off for maternity leave in second semester and the maiden refused to go back. We managed to get her back with only one period in the resource room to finish the year.
These are very brief summaries. There were a lot of meetings, a lot of plans, a lot of behaviours, bullying, tears and some great moments as well. But it has been exhausting. But when I look back on it all, I am even more proud that the maiden went back every year willing to give it another try – year after year.
She had some fabulous teachers who went above and beyond. Those are the years she excelled. But she had a school system that didn’t recognize her disability.
I found a report by the Ontario Centre of Excellence for Child and Youth Mental Health called Mental health service provision in schools for children with Fetal Alcohol Spectrum Disorder (February 2014) which had the following to say about barriers to addressing FASD in Ontario schools:
Schools are under-resourced for providing effective and appropriate interventions for those with FASD, especially in terms of education, awareness and professional development opportunities for teachers, and resources for assessment, collaboration and follow-up with individual clients (Duquette & Orders, 2010; Hall et al., 2010; Job et al., 2013; Koren et al., 2010; Pei et al., 2013).
Finding and implementing services that are cost-effective and that meet the needs of the population is a challenge, and schools and community agencies often need to adapt available resources to establish a program or intervention (Bertrand, 2009; Koren et al., 2010).
Many schools are already challenged by behavioural issues which are more overt, such as impulsivity and hyperactivity (Kalberg & Buckley, 2007; Koren et al., 2010). However, many children with FASD experience internal challenges from the underlying brain damage of FASD, such as impaired working memory or sensory-processing challenges, and schools are not as prepared to support these types of challenges (Koren et al., 2010).
One major challenge to supporting children with FASD in the school system is that it is very difficult for these children to receive a diagnosis.
The Ministry of Education recognizes certain categories of special needs and provides resources and supports for students that fall within those categories (Duquette and Orders, 2010). FASD is not recognized in one of those categories, but getting a FASD diagnosis might improve support provided (Koren et al., 2010; Blackburn et al., 2010; Pei et al., 2013).
Suggestions have been made to classify the FASD diagnosis as a Learning Disorder (LD) in order to help establish support and services (Koren et al., 2010; Blackburn et al., 2010).
The learning and behavioural difficulties of children with FASD are often mislabeled as behavioural issues instead of recognizing the underlying brain damage that might be causing these difficulties (Koren et al., 2010; Blackburn et al., 2010).
The Ontario school system absolutely failed the maiden.
She did not graduate because of the school system – she graduated in spite of it.
And that is a FASD success story.
For those following this blog, you will know in Ontario there was a glimmer of hope late last year and into the Spring … that maybe the provincial school system would finally recognize Fetal Alcohol Spectrum Disorder as requiring specific supports when a Private Members Bill (191 which became 44) was introduced.
However it did not move past first reading and an election was held and a new government elected -the new Premier does not even understand the difference between Autism and FASD – when he was questioned about support for FASD he replied with “yes we will support, we are putting more money into autism.” That’s great for autism, but it does nothing to help students with FASD.
And in 2019, despite requests for meetings with the Education Minister and advocating for students with FASD, there has been no recognition from our Provincial government. Once again, autism seems to be the disability they think exists.
So, advocacy and information sharing continues at local levels in communities. Here is a guide for teachers called Understanding Fetal Alcohol Spectrum Disorder (developed in the USA); it has some great information and it’s free to download.
This guide is designed for every educator (e.g., teachers, special education teachers, resource specialists, speech and language specialists, school nurses, psychologists, and occupational therapists) who works with K-8 elementary and middle school level students. The guide addresses the impact of prenatal exposure to alcohol and how it affects the K-8 grade student. Many educators believe they do not have students in their classes who have FASD, and they may even wonder why this guide would be useful in their own teaching and classroom management. Alcohol is the most commonly abused substance in the United States. Despite health warnings, 20% of women drink alcohol while knowing they are pregnant. Therefore, it is not surprising that there is a high incidence of children (2-5%) in the United States with FASD and they are likely present in every classroom.
With the end of the school year, there are many posts being shared of students with FASD graduating from various grades and high school on the Facebook, so many are beating the odds like the Maiden! To all of them, and those that supported them, congratulations!
So for those that didn’t graduate, I still say, congratulations on your efforts to try to make it in a system that doesn’t support you! Rather than see it as a failure, be proactive and keep moving forward.
Everyone has gifts to offer this world, and those gifts can be shared with the world with or without a high school diploma or certificate!
2019: New Training for teachers and those working with students:
The Canada FASD Research Network (CanFASD) has released a free training module for those working with students: FASD for School Staff Level II: Practical Strategies for the School Environment.
FASD for School Staff Level II is an advanced training course intended for all educators working with students with FASD including all administrators, teachers, educational assistants, ECE’s, office admin, Board personnel and bus drivers. This Level 2 training course, building on the Level 1 Foundations in FASD course, provides the perspective of individuals who have FASD and their caregivers, is evidence-based and current, employs a culturally sensitive approach, and is presented in a way that is responsive to educators.
Level 2 training will provide knowledge and understanding of:
- a review of the key points of the Foundations Level I course
- characteristics of a FASD-Friendly school
- teaching strategies for students with FASD
- the importance of educator/caregiver collaboration
- instructional, environmental, and assessment strategies in the classroom
- transitions facing students with FASD
After successfully passing a twenty-question test, a certificate will be provided to each participant upon completion.
Come back tomorrow as we continue our 99 day journey to FASDay!