Caregiving, Disability

September 28, 2020

School of Mom.

I'm WillowjakMama!

My blog started as a way to document my journey to wellness, but turned into a place to be inspired by others through our collective messy & authentic stories. Now it's my favourite place to be.

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This is it! I finally made it. After almost 10 years of being at home, now is my chance to have some time for myself. Maybe even find a job! Socialize with real life grown-ups. I’m not going to be the chauffeur running around all day like a chicken with my head cut off. I have so many DIY projects lined up. I’ll even drink coffee WHILE IT IS STILL HOT!!! 

Pffft. Ya right (insert Covid-19’s giant middle finger here).  

I feel irrationally angry when people talk about what a luxury it is to stay at home with your kids. I get it, I used to think the same way before I had kids of my own. I know that a lot of working parents will hate me for saying this, but since having children, daycare seems like a luxury. I can’t even imagine having my two kids out of the house during the day. 

My husband calls from work some days, and I find that I am absolutely drilling him for real world information: “Who are you working with?”, “What’s new with them?”,  “Any exciting stories?!” He humours me, but I can only imagine how annoying this is. I think about how he gets to eat lunch while sitting down, BREAKS, other grown ups, the gym, watching all his TV shows and movies, sleeping alone in a hotel room.  Aaaah dreamy. I’m aware that this isn’t all he does, and I know that his life isn’t easy. This is what happens when I become resentful and jealous imagining what his life might look like when he isn’t here. 

This year we have decided that online learning is the best decision for our family. Despite all of the advice (and judgment) we have received from others, this was the only option. I can’t decide which one of us is suffering the most from this decision. Over the summer while Maeve seemed to be thriving from spending so much time with all of us, and having our undivided attention, Ofeibea was desperate for socialization. Now watching her friends walk by on their way to school or bouncing and zipping by on one of the million school buses – I feel terrible. It seems unusually cruel.  What am I doing to her? Is she going to remember how to socialize with other children without sitting behind a computer screen? I’m pretty sure I have self-diagnosed PTSD from all of Maeve’s illnesses and scares over the years, but am I being too paranoid? Navigating this is so hard.  

This year Ofeibea is fortunate enough to have the same amazing teacher she had last year. She runs a really tight ship, there is NO messing around. I used to be resentful about the amount of homework she assigned, but now I am no longer worried about Ofeibea falling behind.

Then there is Maeve. This was supposed to be the first year that Maeve was entering into public school. We have been so nervous and anxious about what that was going to look like. So far… not off to a great start. It wasn’t until the night before her first day of school that we officially found out who her teacher was, yet she still didn’t have access to her online class. Apparently for whatever reason, she wasn’t even registered as a student on the online platform. Typical. Now she has spent the entire week plopped in front of a computer, and I know that she has no idea why. She sits there listening somewhat patiently to everyone talk, but she is not understanding what is being said. Rhyming words, math, science – all things she doesn’t understand. We are still working on babbling and the “Mmm” sound around here. I see her mouth moving sometimes, and I know that she is pretending to speak and be a part of the conversation that doesn’t include her. It is breaking my heart that aside from morning attendance, she hasn’t even been acknowledged. Sitting beside her every day, I am witnessing what it is really like to be a part of her world outside of this house. There is no doubt that she feels confused and alone. I can’t blame the teacher that has never even met Maeve, but how is it that kids like her are so easily forgotten all of the time? If parents were told that their neurotypical elementary children were going to be placed in a University course and expected to sit through it without understanding anything, there would be an outcry. This just isn’t right. My sister has warned me for years that entering into the school system would be a whole different ball game. I knew that the same effort wouldn’t be put into Maeve like she had experienced at her amazing Nursery School for the last few years. They went above and beyond to make her feel included.

It is entirely possible that I am being overly sensitive about all of this, but I can’t help but feel that Maeve is completely invisible to her already overwhelmed new teacher. This happens with the most well intentioned people, this is nothing new. We sit through the entire “class” just waiting to be called upon, or to experience a lesson that she can participate in. Knowing that she is non-verbal, the teacher may just be uncomfortable and unaware of how to approach things, but she is missing out on an opportunity for Maeve’s peers to get to know her. I know it is likely up to me to help things along, but I am new to this as well. I am just so tired already. It is exhausting having to be an advocate for everything all the time. I just feel sad knowing that not only is Maeve missing out, but once again, so are the people that aren’t really bothering to get to know her. She’s here too! She is still a person. She is desperate to be a part of our world. I see it every day when she tries to copy her sister’s exact outfit, sitting beside her on the laptop with a mouse she doesn’t realize is without batteries, or looking through Ofeibea’s grade 3 curriculum book because she wants to copy everything her sister does. At the very minimum, she deserves some effort and acknowledgment.

I realize that this is going to be a constant uphill battle. I can make the decision to keep her home and homeschool, but that just doesn’t seem fair. I am a terrible teacher, I feel like I am not cut out for this and she deserves better. She has just as much right to an education, even if it means altering it to focus more on life skills. Why doesn’t anyone seem to care? Despite the lack of funding the school will receive if we decide to go the homeschooling route, in my heart I feel as though this is what they would want. Do I keep fighting to have her go even though I know it might not be what is best for her? If things change and she can go to school after Covid, at this point in her life she requires one on one care. She cannot be left alone. We were informed by the school that this is not a possibility, and it is actually “beneficial in order for her to learn independence”. That’s great and all, but what happens when she decides to drink the classroom paint and/or hand sanitizer, or seizes the first chance to run out of school into the nearby ravine as soon as she sees an opportunity? Because believe you me, she will be waiting for one. Especially if she isn’t engaged in the classroom. Based on our experience so far, she won’t be.  An alternative would be private school for children like her, but unless we win the lottery, this is not an option. I am just so angry and frustrated that it seems to be our only one. 

I am a very indecisive person, and that is really scary when your child’s future really depends on what decision you make. The constant pressure is enough to make my head explode. Please know that this anger and frustration is in no way directed at teachers. I am actually a big supporter of teachers, and stand by them wholeheartedly. It’s the system that I feel is really letting Maeve and other children with special needs/disabilities down.  They are a constant afterthought. 

Just like every other parent in these strange times, I have no idea if I am making the right decision. Is there even a right decision at this point? Only time will tell, and that is truly terrifying.

Steph D.

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Hi, I'm Stacey.
Welcome to the
Willowjak Blog 

My blog started as a way to document my journey to wellness, but turned into a place to be inspired by others through our collective messy & authentic stories. We chat about themes that are often ignored and voices that aren't often given a chance at the mic. Now it's my favourite place to be. 

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