Decisions

On November 4, 2017 I began a leave of absence (LOA) that would turn out to last for two years.

The trigger for the LOA was my oldest son's Autism Spectrum Disorder (ASD) diagnosis. Early intervention is key so having him slip through the cracks and only be diagnosed at age 13 was very unfortunate. See here for our path to diagnosis.

By the time we received the diagnosis it felt very late in the game and I needed to focus intensely on advocating for him.

During my LOA I...
Educated myself thoroughly about ASD by attending parent education sessions and viewing webinars, and primarily by being in the trenches. I registered with the Ontario Autism Program (OAP); connected with Autism Ontario; attended parent support groups; registered my son as a Vulnerable Person with the local police; tried and tried again to find respite providers (so difficult); coordinated video sessions to provide ABA therapy; personally fundraised in order to send my son to Autism focused agencies who would help him with executive functioning and social skills using ABA; protested the changes to the OAP which increased my son's time on the wait list from 12-18 months to 36 months; advocated tirelessly (interesting word because one does in fact become tired!) for him at school; and met with:
- classroom teachers
- special education resource teachers (SERT)
- head of special education
- staff from learning services: special education
- staff from student services: guidance, co-op, student success
- guidance counsellor
- two vice-principals
- two principals
- Identification, Placement, and Review Committee (IPRC) to have the school board provide an official identification of Autism Spectrum Disorder and Learning Disability in Written Communication
- two instructional program leaders for special education
- two psycho-educational consultants
- psychological coordinator for the school board
- school social worker
- language and speech pathologist (handles all aspects of communication)
- child and youth counsellor
- ABA consultant
- coordinated service planner
- autism consultant

Worked on my genealogy research.

Volunteered at my younger children's school. I mainly help the children switch out their home reading books and listen to them read. Taking two kids at a time it takes 2-3 hours to get through the whole class before starting over. I can observe my child's classroom behaviour and partner with their teacher in helping them with challenges. I also get to meet their classmates and get to know their friends. Volunteering has been a great way to have a presence in the school, get to know teachers and administrative staff, and - most importantly - show my children that I care about their learning! 

Worked very part-time as a lunch supervisor for the kindergarten class at my children's school. This was such a fun experience. It is such a change to deal with little people's problems, there is truth to the maxim "little children, little problems; big children, big problems." It's great to be able to resolve small squabbles, share excitement over wiggly teeth, imagine chocolate soup made in the sandbox, get fresh air and exercise (especially on days when I'm pressed into service as a "goalie"), and generally feel like a celebrity with everyone calling your name and wanting to hold your hand or hug you. And I got paid for this!

Worked part-time in another library system a bit closer to home. 
There were similarities between library systems:
- New CEO/Director (head honcho)
- Many changes at the leadership levels (Managers/Branch Supervisors)
- Short-staffing (17 % of positions vacant at closer one)
- Precarious work (82% part-time at closer to home; 56% at permanent location)
- Strong union leadership working to improve working conditions

There were also many contrasts between the library systems:
- My permanent library system has 18 branches, this one has 7.
- Permanent location communicates primarily via email; local one uses SharePoint and considers a daily email from a subordinate to their supervisor too much.
- Both are unionized but local one only in the past year (since May 2018). Management at the closer to home library doesn't seem to know how to lead in this environment and speaks of the union in hushed tones like it's a dirty word.
- Appalling lack of concern about health and safety at closer to home location. The employer was in violation by not having any first aid certified staff during many shifts from March to May. I had to call WSIB and get my union involved with HR in order to finally be sent for my First Aid certification. 
- Minimum staff at permanent location is at least 3 people; at closer location is 2. 
- Permanent location is in a larger city so has corporate security who can be called on to handle extra challenging customers or situations; closer to home library provides no recourse to staff and they are told to call the police if needed.

Working part-time taught me how hard it is for part-time workers to feel like they're in the loop and aware of what's going on at their location and in the system at large. It motivates me to make sure I communicate in multiple ways (verbally, whiteboard, printed info in their mailbox), not just via email since when they arrive for their shift they often hit the ground running.

Not working in the role I'm most suited for - let's just say it, being in charge - was challenging. I thought about how I lead people, whether in a paid or unpaid capacity, and it was at odds with what I was experiencing. I believe in open communication, providing people with as much information as I can in order to empower them in their work. I believe in taking time to listen to and get to know my staff so that I can understand what they're passionate about and how I can support them. I value the "fresh eyes" and creative ideas that new team members bring with them. My goal is to help people develop and grow and my experience is that in order for that to happen there needs to be an investment of time and communication.

After some number crunching and discussion with my husband, I'm looking at returning to my full-time position. I have my husband's support and that is a key element to me. It will be the first time that both parents are working full-time and it will be a new experience for all of us but there are a number of things that lead me to believe we will be successful:
- My husband works near home and the children's schools so there is still a parent locally who can jump in if there's an emergency.
- By November my children will be ages 15, 13, 10, and 8.
- All the children are now able to leave home for school in the morning without parental supervision. We have tested this a few times to make sure. The 13 year old walks the (currently) 9 and 8 year olds to the crossing guard and they walk through the park to school from there.
- The younger children are able to walk home from school on their own if needed. We have tried this a few times, however we prefer to pick them up since we can.
- The children are able to be at home on their own for a couple of hours with the (currently) 14 year old in charge. We have tested this. The two older children have their babysitter's course training.
- My union's collective agreement has strong language for LOAs so I will be able to take them as needed to provide childcare over the summer and to launch them into school in the Fall.

And so... on October 1, 2019, almost two years since I started my LOA, I plan to return to my full-time permanent position as Senior Librarian.

Our Path to the Autism Diagnosis

I don't think I've shared how we arrived at the Autism Spectrum Disorder (ASD) diagnosis for our oldest son. It was a longer than necessary path and I hope that sharing it helps other parents reach an accurate diagnosis more quickly.

In 2012 (grade 3) we paid out of pocket for a psychological evaluation. In their report they noted that we as parents "endorsed a notable number of items that are typically associated with Pervasive Developmental Disorders (PDD), and Asperger's Disorder in particular." The Autism Spectrum Rating Scale (ASRS) was administered and our responses fell in the "slightly elevated" range, "suggesting that [child] displays a number of behavioural characteristics similar to individuals diagnosed with an Autism Spectrum Disorder."

They concluded that "...although [child] does seem to lack some social skills and displays some unusual PDD-type behaviours, based on parental report at this time, he does not exhibit the typical clinical presentation or extent of social/communication problems and/or pattern of unusual behaviours often seen with children with PDD. [...] he does not engage in repetitive/stereotyped behaviours such as hand flapping, spinning, or twirling, or playing with toys or objects in an unusual manner."

Later in the report: "Observations made during the assessment, combined with scores received on behavioural rating scales, were also somewhat suggestive of a Pervasive Developmental Disorder. Significant difficulties were described by both [child]'s parents and Sunday School teacher in the areas of social interaction and behavioural rigidity. However, given his extreme difficulty with attention and impulse control, it is difficult at this time to determine if [child]'s difficulties with social interaction are related purely to ADHD, or to an underlying Pervasive Developmental Disorder as well."

So basically because his behaviour wasn't flamboyantly stereotypical they dropped the ball and didn't provide the diagnosis, instead suggesting that we "monitor his behaviour and discuss this issue again in the future with his pediatrician or primary physician." So what did we pay thousands of dollars for this report for? Thanks for nothing Chapman and Hildyard.

In 2015 (grade 6) we saw a Consultant Pediatrician & Neonatologist who also missed ASD signs and noted he "has ADHD of the combined type but he also has very serious obsession with videogames" and "he has a specific learning disability."

Finally in 2016 (grade 7) my son had a psycho-educational consultant who looked more closely and recommended further testing for ASD. Unfortunately she ended up off work with a concussion, delaying our receipt of her report recommending this. She conducted extensive assessment using direct observation, standardized behaviour questionnaires, the Autism Diagnostic Interview (ADI-R) with me, and the Autism Diagnostic Observation Schedule, Second Edition (ADOS-2) with my son. In November 2017 she was able to provide a diagnosis of Autism Spectrum Disorder, Without Intellectual or Language Impairment. She noted this was clear for the last several years and that there was evidence from Fall 2013.

Knowing the diagnosis was coming, on November 4, 2017 I began a leave of absence (LOA) that would turn out to last for two years. Read more about that here.