7:07am It's day nine of our holiday break. The inmates are beginning to take over the asylum. My resolve is weak and they know it. Today I will try to appease them with a sugary breakfast and unlimited screen time.
7:09am Netflix isn't working on one of the iPads. I know this, because the taller one came to me, wailing as if she'd lost her beloved pet. Part of me completely understands her terror. I bark at her, anyway There are far more important things to shed a tear about in this world, and she retreats, sulking into her room.
7:11am The small one reminds me that I've promised to let her buy a tiny palace pet toy today. I vaguely remember promising her the tiny creature if she would just 'go play while I read my new Felicia Day book. Dammit, what was I thinking? Maybe, I can talk her out of it. Ha.
8:09am They've been watching questionable cartoons for almost an hour now. I was going to fold some laundry but I figured reading more of my book and updating you, would be a better use of my time. The small one interrupted my reading to ask: "Mama, what does this world doesn't have?" The little word wizard is trying to confuse me. I'll have to watch her closely, today. She's up to something.
10:29am Sorry, it's been so long between updates. I attempted to shower, alone. I no sooner applied shampoo when I heard the first screams. I made a mental note to buy a radio for the shower. Surely, there is something that can drown out the screams. Do I sound cold? I assure you these screams are calculated. I finish my shower in record time, even though I know as well as I know anything, that the issue is a minor one.
The cat wanted out and they thought it was too cold for him. Demons.
11:37am I'm getting hungry and they are getting twitchy so I think a ride in the van might be for the best. At least then, they will be locked into place in their booster seats. "Let's head into town." I said. Today is snowy and cold and will require many layers of clothing and gortex. Once we are bundled and ready to move into the van I hear the word wizard speak.
"Mama, I fink I peed."
12:29pm We finally reach the Tim Horton's drive thru. I've been dreaming of an Iced Cappuccino. The thought makes me generous and I offer to buy a Candy Cane donut for the eldest. The youngest is still dreaming of her new toy and there is a small moment of peace in the van.
"Can I get a small Ice Cap made with white milk and a Candy Cane donut please." I say into the speaker.
She replies with the dreaded words: "Our ice cap machine isn't working, right now.' She says this as if it doesn't really matter and that there is something else that would appease me at this moment.
I know this to be a lie. I feel that familiar rage build. This happens all too often and you would think I might be prepared. I stutter out another order, one that I don't really want, and probably won't drink, and I sulk while I wait in the car line-up to pick it up. I tip my usual amount but I don't say Thank-you with as much cheer because I secretly think they have been too lazy to refill the machine.
1:00pm We arrive at the mall. It's packed because Christmas was just days ago and people need more stuff. Who am I kidding? We've come to get more stuff, too. How do I get into the toy store, grab the damn toy and get out without the kids being drawn in by some hypnotizing display or another. I grab tiny hands and move quickly to the back of the store, their little legs struggle to keep up and someone takes poorly placed lego box to the shoulder but it is a small price to pay to avoid a giant Star Wars display that would almost certainly have them begging. We arrive at the small selection of tiny, colourful and ultimately useless animal figures. The small child chooses one. I grab hands again and make for the cash, thinking this might not be as bad as I thought. Her sister reminds me that she has a gift card to spend at another store in the mall. My head drops. This won't be easy. I find myself wishing I had brought my Toblerone for strength. I fish around in my purse and find a mint. It will have to do. We make our way though the mall.
2:14pm We made it back to the van with a stupid mouse and an even 'stupider' giant-eyed stuffy. Only two-thirds of us have cried so far, today.
2:35pm Is it really only 2:35pm?
4:31pm Maybe, Ill start supper. I feed the children gummy worms and encourage them to go to the basement to play so I can concentrate. They take the worms and scoff at my suggestion. I scowl and they stay closely underfoot. For fun I count how many times they say 'Mama' while I prepare a meal they'll never eat. At twenty-nine, I quit counting.
4:49pm They were arguing over something. I don't know, I wasn't listening. I laughed out of sheer exhaustion when the eldest came to plead her case regarding the argument. This was troubling to her and she ran to her room and slammed the door. I must remember this strategy for the future.
5:35pm He's home. He received a rock star welcome (from the children) and we eat.
6:09pm We begin 'family movie night' and take a quick picture for Instagram. You know, to prove we are doing this parenting thing right.
8:00 We start the bedtime routine. The eldest, although dramatic as hell, goes quickly to her bedroom after brushing because she's likely looking forward to her time away from the rest of us. The little one fights it like she's on a sinking ship. It's his turn to lay down with her, in our bed, because she has decided she'll sleep nowhere else. I watch them disappear into the bedroom before I grab the corkscrew.
8:03pm What the fuck! Netflix isn't working. I may have shed a tear.
I took some screen shots of some of our most recent text conversations regarding Miss Kate. The season has been hard on her, and us and most devastatingly, her sister. There has been biting and hitting and screaming and all this before noon. There has been crying and exasperation and complete and devastating confusion. I'm trying to make sense of it. These are the things that I believe are making the holidays so hard for her to manage.
School is done for two weeks. All that beautiful routine is gone. Around every corner is a surprise and predictions are nearly impossible for our girl.
There is excitement in the air. You silly people who think individuals with autism lack empathy when in reality they feel everything so intensely that it takes a physical and mental toll.
There is a promise of presents and Santa and Reindeer and magic and it's all so unpredictable it hurts.
There are expectations for behaviour in new and unknown situations and the pressure and stress of it all make her act out.
When she acts out, we feel pressure and stress from onlookers, and she feels our angst like no other.
There are sights, sounds and smells in the air that challenge her sensory issues daily.
Have I missed anything?
What issues are your children experiencing this holiday season?
It's not me, it's you. To be fair, I've often admired you; I saved all my Canadian dollars to travel to your biggest and best cities, supported your sports teams (Go BoSox), and revered your authors (Who doesn't love a little Vonnegut?) and artists (Ed Hopper). I've dreamed of my children receiving acceptance letters to colleges like M.I.T. (Kate, of course) and NYU (my sweet Grace). You've been a huge part of my imagined future for a very long time. I wish there was an easier way to say this but, the truth is, I think you've lost your appeal in the worst possible way. You've lost your humanity. Frankly, you're a dog-kicking, racist, son of a xenophobe and I just can't let my children be a part of it, no matter how shiny your offers seem..
I'm concerned you're stuck in some sort of Matrix, with your Donald Trumps and your Fox News and your goddamn gun-love. It's fucking unnerving to watch you spout your ethnocentric ideals and terrifying to watch you talk of denying entrance to refugees of war and rights to women and minorities.
Of course, I know that some of your very own citizens are as deeply concerned as the rest of the world about your antics. I hope these clever folks know they are always welcome to come up here and stay with us.
Later America. Our family is out.
We made a decision about your future today and I wanted to talk to you about it. We've decided to transfer your savings into an RDSP (Registered Disability Education Plan). This was a tough decision for us because it felt like we were admitting that you wouldn't be okay. It felt like we were accepting the idea that you will always need us to take care of you. We got all up in our heads about it, and it felt pretty bad for a little while. We had to remind ourselves that this isn't about us and our sensitivities. This is about what is best for you.
I need you to know that we made this decision because it offers you the most benefit for your savings and the best options for the future. You will gain access to more money when you decide what you want to do and we will have good and knowledgable people to help you figure it all out when the time comes.
We know you are capable of anything. We hope you understand that this is just one more way we are going to help you prove it.
Love you Baby,
Mom & Dad
I don't know if I've told you this, but I teach Kindergarten. I teach in a have-not Province with a mandate for full-inclusion within the classroom. I also, have a daughter with autism and a neurotypical daughter in the school system. This gives me a particularly unique view from the perspective of a parent of a child with autism, the parent of a typical child and a teacher on the front lines of education today.
When I really think about it, the system is failing me as teacher, my daughter with autism and my neurotypical daughter as well, and here's how:
Let me begin by saying that full inclusion is not only a necessary endeavour, but an absolute right for every individual in the education system.
However, let me also say that full inclusion (meaning each child is given what he/she needs, and NOT that all children are treated equally) is an extremely expensive endeavour. Never in my eleven years in the system have I ever felt, even remotely, fully supported or funded in terms of classroom composition and the needs of my students, by the Province.
Every single day I feel like I am failing my students because I am not trained to offer support outside of the academic day. I am not well enough versed in speech and occupation therapy or even a play-based approach for those on the autism spectrum for little D and little O. I am not sure how to curb aggressive behaviours and maladaptive thoughts in little G and little S. I am not qualified to offer grief counselling for those who have suffered trauma like little M and little A.
On Friday, I held the sweetest little doll on my hip while she gnawed on my shoulder for oral motor regulation. She's non-verbal, so she couldn't tell me what she needed but she could show me. Little M clung to my leg in tears because she was terrified after experiencing a traumatic event in her home the evening before. The curriculum weighs heavy on the shoulders of teachers, so while I made every effort to comfort these two, I had a class of others who were waiting to learn about the letter Y. (Well, except for B, he was tearing pages out of my books). So, I took a deep breath and began to sing: "Y is a consonant, a letter in the alphabet..."
Of course, we have lovely professionals within our system that are well-equipped to work with these students on these particular issues but their wait lists are frustratingly long and their plates are full as well. In the staff room we dream of having these professionals on staff with daily access. "Can you imagine if we had a full time guidance-councillor?" we'll say, "Or a school psychologist on staff?" We allow ourselves to dream for a moment and then the bell rings because we've had our seven minutes to eat lunch.
We work evenings and weekends (and those so-called summer holidays that we do NOT get paid for) to plan and create lessons to support the curriculum because our time at school is largely taken up by meetings with these professionals to gain insight on how to help our students in classrooms that are so busy and diverse in this 21st century.
We plan multiple lessons daily because best practice says one size does NOT fit all. We differentiate and we use the principles of universal design. We use evidence-based approaches and "insert education buzz word here", and more.
This is not your grandfather's classroom.
This is not your father's classroom.
This is not your classroom.
Implementing full inclusion without both fully funding the program in terms of resources and professionals on the front lines, and providing the current and relevant training for all staff for their particular assignment is an absolute travesty.
Implementing a failing program so you can have the moral high-ground and at the same time save money is reprehensible.
Implementing a failing program on the backs of students, teachers and EA's who already receive very little public support is typical.
We need more money, more people and more training.
And most of all, we need to be a priority.
Happy Mail to:
27 Wellington Row
Saint John, NB
Grace and Kate's mom. (Shanell)