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COVID-19 update

So, it has apparently been a month since I have updated about the state of things. Hubby still keeps me informed about Trump and his shenanigans — ev even though we are in Canada — planning for return to school ?! and other issues have been ongoing for the past month. The kids have not had their ABA sessions since July something as the BI had personal issues, the kids went away for a week, so they are dis-regulated.

Hubby and I stayed home to celebrate our 14th (?!) anniversary instead of the originally planned trip to Vegas for TrekCon. There was NO way I was 1. getting on a plane, 2. to go to the States where there seems to be rampant infection/planning. Nor are we going in December for when it has been rescheduled. We got our money back for the tickets and cancelled hotel and air reservations. Hubby had to change his work schedule and ended up working that week but took the following week, when the children had returned, off. We cleaned up some things, and relaxed.

So now we have the stress and anxiety related to the opening of schools in BC for the 2020-2021 year.

In our case, we have the added fun of a pending heart surgery for my daughter at the end of next month. So I have called the cardiac team to ask about whether I’m supposed to quarantine her for 2 weeks pre-surgery, as that is what I read in a Facebook group. Apparently, my question opened a can of worms, (or lit a fire under their ass) as this question touched on the “what do we do with school reopening, COVID-19, and the children who will/are patients at this hospital?”

Today I got a call saying that 1. her pre-op appointment has been moved forward a week (so 1 week prior vs 2 weeks pre-surgery) and that 2. follow the CDC guidelines but no definitive answer as yet, because this has been escalated the to the higher up personnel at Childrens’ Hospital. So I have an answer… or is it a non-answer?

So I have to discuss with hubby about the plan. I also did not realize that the pre-op appointment will be 5 hours!! Guess I should read things fully when they are sent eh? but then when I was sent the confirmation of the appointments and surgery, although we have been waiting for 2 years to hear about a date, it still shocked/freaked me to hear about this.

The surgery will be 4 days after the twins’ birthday, (Roll my eyes) so that will be more fun and games with planning. Do we bother with a party? We typically don’t do much anyhow. Presents, send cupcakes to school. But if we don’t send them til later then do we just postpone the birthdays? also what theme would it be? There are 3!! birthdays.. so I have to find Minecraft, Unicorns, and Star Wars (huh?) stuff.

I should go make lunch now… on one of the hottest days of the year. More fun!

Stress, COVID, ASD and me

This summer has been hard. Most days are hard but as with most of us, this quarantine/pandemic thing has added more stress.

Yesterday, I was talking with the twins’ BI at drop off, and she mentioned that one of the other clients stated that she needs to ease off on the wine. The BI qualified it as the person isn’t an alcoholic but we all have our coping mechanisms in times of stress. I used to drink in my 20’s because that was the “cool” thing to do, but as I have gotten older, drinking alcohol is not my thing. We were gifted a bottle of wine last month and hubby was like, “let’s open it” and I was like, “let’s not.” but I digress.

When this quarantine started in March, 19 weeks ago, I was thinking that I could use it as motivation to lose weight and actually use my treadmill on a more regular basis. …. That was infrequent and difficult to juggle with my high needs children, stress and my habit of eating unhealthy things (chocolate cake, cookies, McD) and the pain of cooking meals for the picky family. It is easier to order in/go to a drive-thru.

This week, I am approaching the 300 pound mark on the bathroom scale. OMG! I did not WANT to become this person. I remember telling hubby years ago that I approached this weight that he should tell me so that I can NOT be that woman. Of course, the fact that he is not exactly sticking to a diet either doesn’t help with my motivation or follow thru. I feel sabotaged to eat healthy when I can’t get my daughter who has declared that she will not eat meat (due to her love of animals, and Diego) but will not eat a vegetable or try a fruit either. *sigh

COVID-19 has also added stress as we have monthly cleaning done, and it seems to be different group of people each time. I am supposed to vacate the area where they are, but they take forever and at times, the children’s eating schedule and needs interfere with the social distancing issue. It is a stress to have them come. So I decided yesterday that I will skip next month and see if I can get myself in gear to adhere to a weekly cleaning schedule, as I used to do when I was in the 40 Bags in 40 Days challenge. (FYI, you aren’t limited to 40 days, this can be a year round thing to clean up the clutter and purge unwanted/unneeded things.)

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Last month, I also started my Invisalign treatment to straighten my teeth. I had a wonky tooth pulled, (which scared me as I have not had a tooth pulled since my wisdom teeth in my 20’s) and now wear trays 22 hours a day until October. I have always had tight teeth so it has been difficult to floss (so I didn’t like to). Now I have to take the trays out to eat and brush and floss before putting the trays back on.

I asked the dentist how I was to remove them. “You hitch the back with your finger nail and pull down.”

I showed her my bitten nails. (I have been a biter my whole life and have even worn fake nails, which works for a while but then I bite them when the fake nails came off.)

“You’ll figure it out.” She said.

I did. I had to use a spoon for the first week or so, until a Facebook group directed me to buy an OrthoKey. I did the research and bought a PulTool instead. I love my PulTool! What a godsend. AND my nails have started to grow because I can’t bite them with the trays in.

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Two weeks ago, I also braved the quarantine, donned the mask, and went to the hair salon and had my hair cut on July 4th. I have used this stylist 2x before. I go to the hair salon maybe 1 or 2x a year, if that. I used to dye my hair and was mortified to be told on my 40th birthday that my hair had grey! I have since decided that $100+ to dye my hair is ridiculous.

My hair has been in a ponytail for most the time so I told her to cut it short so that I don’t have to worry about it, don’t have to do a lot to it, and that my curls might come back. So I have been enjoying a change.

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I write about the hair and teeth to say that I have started on self-improvement in some ways but still need to work on the other aspects.

I am the type who needs a workout buddy. I used to go to the gym in my 20’s with a friend. She would go to one area, I would go to another area but we were there for the hour and then we would leave. That was the incentive to go. Now it is hard to find other mom friends who can join me even for a walk in the park. The added fact that most of my friends are either in other parts of Canada or ASD moms with their own schedules and stresses doesn’t help either.

Back to the stressors, children melting down about various things; bugs, refusal to eat foods, refusal to go outside because of the bugs, fighting with each other. Anxiety about “the virus”, worrying about becoming an adult, death, moving away from home… these are some of the added fun things that I have to deal with.

My son will still come down at bedtime and tell us that he is scared; of monsters, of becoming an adult and having to leave this house, about dying, about someone coming into the house while he is sleeping, and other things that I don’t always understand what he is telling me.

We try different strategies but I think in the end, I need to get my act together; stop sitting in front of the computer so much (I get sucked down the geneology rabbit hole a lot) and write up all the schedules so that we ALL know what is going on.

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Ugh. It is lunchtime soon. I have to figure out what I’m feeding this horde.

My thoughts on Da 5 Bloods

Wrote this on July 22, but it did not publish… sigh.

I just finished watching “Da 5 Bloods” on Netflix this afternoon. It is the story of 4 black men who served in the Vietnam War and were part of the same squad. Decades later, they return to Vietnam to bring home the bones of their fallen squad leader, Stormin’ Norman, played by Chadwick Boseman, as well as gold bars that they had buried. The 4 men plan to bring the gold and Norman back to the USA.

This movie was directed by Spike Lee, and is one of the few of his works that I have watched, because, frankly, his work is usually too hard for me, as a white woman, to digest or comprehend. I will praise the genius of this movie for the message that it brings. While this message is not a new one, it is certainly timely in the face of the past few days/months when the message of “Black Lives Matter” has been loudly proclaimed, not just in North America, but globally.

This movie is complex in its showcase of the characters, as the interweaving of historical facts about the Vietnam War, the atrocies of that time and the effects that this war had on not just the people who were involved in the war, but the reverbarations that continue today. The fact that there was a larger percentage of Black persons fighting in this war than in the American population, the fact that they were sent to fight a war on foreign soil for rights when they were denied many of these rights on their home soil, the fact that landmines are still in Vietnam, the fact that new generations have forgotten about this war, the fact that much injustice was done and is still being done to our fellow brothers and sisters; Mr Lee speaks to it all, with characters of depth and complexities to speak to us all.

According to an article in The Atlantic, this movie was originally pitched as an adventure movie, “following a group of mostly white veterans as they make their way through modern Vietnam in search of their former squad leader, who is very much alive” but after the original director dropped out, Spike Lee & others transformed it to what Netflix presented.

I feel hesitant to say this as I am a middle aged white woman with few Black friends. I believe that we are all discriminated against in some way or form, but some discriminations are subtle, and others are extreme. I have often felt that I am in the minority. I have experienced discrimination as a woman; as a young person; as a hearing impaired person; as a former practicing member of the clergy. I have also experienced racism at a very young age. Growing up in a small town which had generations of Irish and Scottish descendants, this first generation Canadian was taunted for being a “Nazi” or “Commie” when I explained about my pride in my German Mennonite family who came from Russia/Ukraine.

Backing up a bit

So upon review of the background story, I apparently didn’t get too far to explain about my little warriors. “Heart warriors” seems to be a term used in the facebook groups that support patients and mostly, parents of children with cardiac issues. So after we took them home from the hospital post heart surgeries, we have continued to go to followup appointments at the local children’s hospital. M, the boy, doesn’t need to go as often as his sister, L, since he hasn’t had any corrective procedures aside from the angioplasty at 2 months.

When the children were about 15 months, we moved to a new home. We had run out of space in our 3 bedroom townhouse. They shared a room and with 2 cribs and a dresser in there, it was crowded, with barely enough room to put them down on the carpet to change their outfits. The “play area” of our living room was a 4×4 space and they were ready to move around. So we moved further away from Vancouver BC to Surrey and live in a large house at the bottom of a cul de sac.

While we were adjusting to the changes that come with a new area, separate rooms, MORE stairs, and a big playroom, they were moving from crawling to charging around and even climbing things. It was a few months after their second birthday, that it was suggested that we might need to get them assessed for OCD or Autism. I was livid! It was hard enough to deal with the twins as it was, plus I had worked in the healthcare industry for over 15 years and I knew what OCD was, and this was NOT it.

At the time, it was enough to deal with having twins and trying to get them to eat, potty train, their cardiac health status, and my inexperience in general with the whole parenting thing that contemplating that there was MORE stuff wrong with them was just not an option. I forget exactly when I finally agreed that it was worth looking into, but in the end, we got our children assessed for autism. My daughter was not non-verbal, but rather unable to express herself, to articulate as per her age level. We got the official diagnosis of ASD for my daughter when she was 4; on the first day of preschool. So I opted not to send her, but sent my son. Of course, there were signs with him as well, and his ASD diagnosis was confirmed the following summer.

I had worked in healthcare for over 15 years but this was a whole new world for me. I had to learn new terminology for not one but 2 medical conditions. I had to then learn how to navigate the support systems for getting the “proper” care for my warriors. At the time, I was also a part of a twin mom group. I had to quit as “we get it, we have twins” wasn’t cutting it for me. Yes, you have twins, but a) you aren’t me b) you don’t have high needs twins c) you have your own issues that you aren’t able to give me the support that I need

I understand why so many people turn to social media for information and support. This way you can pick the group that fits your needs and you can pick and choose the information that you want/need to read. Also you can leave a group (facebook) when you want/need to. So I turned to social media and specifically facebook to help me navigate this new world in a new province. Even though I had lived here for a decade, the “system” of support was foreign to me. I knew who to ask or where to look in the areas where I grew up, but not here.

More conversations with my kid

This morning, I was woken up by my daughter crawling into my bed, (past 7!! wow!) She climbs in and starts talking.

“Just a minute sweetie. Mommy isn’t awake enough to focus yet.” Pause. “Ok what was that?”

“When I am a teenager, I will have to get a job.”

“Ok. Yes, that might be a good idea.”

“I will have to get a job, but I don’t know what I would want to do.”

“My first job was washing dishes. Later, I worked in a fast food restaurant.”

“Yes, I could get a job in a restaurant. Washing dishes.”

I don’t remember how we got to it, but inevitably we got to her passion. “I would work as an animal rescuer. And have spy glasses that will scan to tell me where the animal is. Then I would look in a house to find the animal that we are looking for. But not that house, it has a dog. We aren’t looking for the dog.”

(Then she starts to explain her ideas of animal rescue that are based on the Diego cartoon. I have tried to explain to her that the job isn’t quite like that… that there is no scanner to find the lost animal. The conversation then went on…)

“But if a bear was caught in a trap, I would make sure to tell him that I am not going to hurt him. I have to make him my friend before I get the trap off of him.”

“You know, I have friends that work as animal rescuers. Sometimes, it is dogs, other times it is horses or snakes.”

(Nope, she then went on about needed Diego like equipment…. smh.)

It was too early in the morning for conversations about her future and me trying to find language to explain reality. Luckily, she then asked about breakfast so I sent her downstairs.

Conversations with my ASD kid

Conversations with my ASD children are interesting. My daughter will leave you scratching your head afterwards as you ponder her train of thought.

She has beautiful, long hair as I did when I was a child, but she HATES letting me brush it. It is true that I am hard on my hair and rip it out a lot rather than gently tease the tangle out. To that end, I have to comb my hair in the shower with conditioner to get tangles out of my hair and I do the same for her. As my hair is curly, I often wet it to comb, then my curls just happen. L has seen this and insists on a spray bottle for brushing her hair as well.

So we were in my bathroom trying to tame her hair when this conversation happened.

“Mommy. Am I girl or a boy?”

“You are a girl.”

“How do you know that I’m a girl?”she says, as she pulls down the front of her dress, exposing a nipple. “Because I have these?”

I pull up her neckline, and answer.

“Because you don’t have a penis. Boys have a penis and girls have a vagina. You have a vagina. But you may feel like you are a boy at times…” (I wasn’t sure where this was going and wanted to be open to the whole gender vs. sex thing if necessary.)

“Oh good. Now I just have to go find a boy that I like and he likes me and then these will grow and we will be a family. ” (um, I think this is what she said. I am hearing impaired eh?)

“Uh, yes.” I say. “When you get older, you can find a man that you love and who loves you and then we will see.”

Okay! She says. I have finished her hair now, so she leaves.

Later, I told her BI (autism tutor) who responded with “awesome!” I assume because my daughter’s train of thought is fascinating to her, and also because it means that she is thinking about these things.

Meanwhile, I dread PMS as she is moody enough as it is, and having to explain puberty to her when she gets older.

Ereader problems

My ereader decided to be weird yesterday and now I am contemplating getting a new one. Reading is my refuge. I use Goodreads A LOT! (see the sidebar) So I’m dealing with resetting the ereader, whiny, cranky children who don’t want to do schoolwork, and realizing that I am tired. Tired of cooking, tired of thinking that I need to buy something from online sales, refereeing children, worrying about in-class sessions and what September will look like, tired of trudging to the stores and worrying if I’m wearing the right “gear”, tired of not seeing my friends, …

It’s just the icing on the cake that you wonder about, you know. You think you are doing ok, and then it is a little thing that tips you over. I don’t want to fight with my kid about doing school work. I had a jammie day on Saturday and read 2 books. That was nice. Sure I have paper books that I could read, but I don’t want to. They are in hubby’s office on a shelf, literally marked, TO READ, next to another labelled, TO READ AGAIN, (because I forget what they are about, or I loved them so much). Am I doing that? No.

I will now head to the kitchen to see if I remember what I had decided to make for lunch today while trying not to trip on a cat.

Self-Quarantine – Frustration building

I have not left my house for a week. Aside from going in the car 2 days ago, putting a cheque in the bank, and going to DQ for ice cream (because I had a SERIOUS case of cabin fever), I have not left the house for days!

My children have gone to their grandparents’ place for the week, as per arranged months ago, due to Spring Break. So hubby and I have a week to clean, do projects that we haven’t gotten around to, binge TV, and relax. Hubby has been working from home for the past week. This is not uncommon for him to work from home. He is in the tech industry so it works. There have been days in the past when I need him to pick up a kid while I took the other twin to an appointment. It is just different these days because I don’t say “oh, I’ll just go out to the store for something to do.”

I spend my days cleaning my kitchen, avoiding the messy playroom that I need to deep clean, not going outside (although I have a large backyard that needs some serious attention, especially my gardens), watching TV while I use the treadmill (let’s see if the treadmill thing lasts past this quarantine), but mostly I sit at this computer and do genealogy.

When I was pregnant, I was too tired to move. It was July, hot and humid, and I was huge! I wasn’t working as I had “retired” from my profession the year before and dropped out of my night classes because I was too tired to do my homework, but I still wanted to do something that was productive. So I decided to revisit my family tree. (My paternal grandmother and my mother in law share the same maiden name, so I thought to see if there was a connection. There isn’t but I learned a lot about the family that I married into, and a lot about genealogy research in general.)

My “hobby” is going to cemeteries (wherever I go, even vacations!) and photographing the stones to post on the internet. So this is what I have been doing. I have a large collection and I am only working on February 2019 at the moment. It takes a while because even though I have posted the photos, I like to do the research about the person and find all their family. I have been using Findagrave, but have recently returned to WikiTree and post my photos on this site as well. My research “takes me all over the world”, mostly North America, England, Prussia and at times, South Africa or Australia.

But I digress. In this house, we don’t have cable TV. We stream or download all content. This includes news, any television shows, you name it. I have discovered shows that I would normally never watch (Graham Norton Show), and limit what my kids have access to online. This can be both a blessing and a source of anguish. The fact that we are a “social media” family. This pandemic has been hard. Yes, hard on everyone globally, I know. But for me, it is hard because I am sick of the memes, sick of hubby telling me the latest that he has heard from Daily Show, or Seth Meyers about Trump, or mostly US related things.

Today, I realized that what I hate most is the uncertainty of it all. I have been in my house, self quarantining as directed. I have immunocompromised twins, who also have autism. The anxiety of what my children hear, plus my increasing anxiety and cabin fever, is hard to deal with. I am doing what the government has advised; stay home, clean diligently should you go out, social distancing — and yet I read on local media, that there are still groups of people out there who are not doing their part; crowded beaches, basketball in the park, and this weird Smurf thing.

I have been further stressed by reading about home schooling memes. Parents saying that they have tried home schooling for an hour, a day, and now have more respect for teachers. Now that schools are shut down indefinitely, there are fears about home schooling, finding resources to keep teaching kids the curriculum, will we loose the year? what about grade 12s who were slated to graduate? How does all of this work? My mother in law suggested that I call the kids’ school today and ask if they have homework. I told her that no one would be there today. “Well admin staff will be there.” was her reply. “No, this is Spring Break.”

I get that other schools are on different schedules but I’m not starting a venture to homeschool when it is supposed to be their break. My kid balked at writing 2!! sentences in his journal. (I sigh and roll my eyes at this.) If I can’t even get him to do that, there is NO way I’m going to do a “curriculum”. (I also know me, and my kids. I considered home schooling for this year when I was unhappy with the school district last year but know that I would have to hire someone else to do it. I may have post grad education but I am NOT cut out to teach my kids school stuff every day.)

So you, who are reading this (if you are), are probably thinking that these fears are nothing new. This is all over the news, social media etc. Probably think this woman is a worry wart. Usually I am. But I know that while this is a situation that is impossibly huge, that there is only so much I can do. Yes, it is frustrating when others do not do their part by taking this seriously. So I have to remind myself of the serenity prayer and trust that things will work out well in the end.

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Finding balance and cuddles

There is nothing like the cuddle of a cat. They climb into your lap, demand that you pet them, hold them, and when you do, they close their eyes and purr loudly.

We have 2 cats. I looked for 6 months after my son requested a cat. I had lived with cats and dogs, but never owned one before. I figured since we had twins, let’s get not 1, but 2 cats. So we got brothers, when they were 6 months old. They had been taken to the shelter after the previous owner was told either the cat goes, or she would be evicted. So she gave up her cats, much to the anguish of her young children.

I hunted for a long time because I needed to make sure that whatever cat we got would be a good fit for our ASD twins. My BI is even surprised at how tolerant my cats are. My kids grab them, squeeze them, hug them and it is only 4 times that I know of that one of the cats has scratched or bitten. (usually the other cat, not the one in the photo).

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So while I was holding this cat, I thought, how is it? that these cats are like babies/children (as they will be 2 in November) and yet I treat them differently than the children that I gave birth to. Let me explain. When the cat wants a cuddle, it is a wonderful break. But I suppose the difference is that when I’m done, or he is done, I am rarely left wishing that it was longer. When my kid (one of them is clingier than the other) wants a hug, it is usually “not a good time”; I’m at my computer “working”, or they are supposed to be in bed (or doing something that I asked them to and this is a stall tactic).

Why are there days when it seems easier to love the cat than it is to love my ASD children? I suppose it is because while we know that for both the kid and the cat that we will tell them what to do and they will ignore you, we expect it from the cat and allow it, but not for the child. My hubby has often said (when we were first dating/married, and may deny saying it) that he prefers computers to people, because you tell it what to do (code) and it is supposed to do it. When it doesn’t, you fix the code. People are unpredictable. So he will get more easily annoyed (and loud) when my kids do not comply with what we have asked of them. I have had to remember, for myself, a) what was I like at this age b) ASD kids don’t process things the way that NT kids do c) the twins are separate people who don’t process things the same way the other does. So perhaps I am more gentle with my kids at times than I should be, and harder with them at other times. Oh, it’s a hard balance but I’m working on it.

Life with COVID-19 and ASD

So the self-quarantine and emergency measures have continued. I think that the adults are more stressed than the children of the house. This is not to say that the twins haven’t been worried about the CoronaVirus. Both have asked questions like “when is this virus thing over?” and similar questions. But for the most part, this is a normal spring break. We were not planning to send my children to ABA Spring Break camp. My BI runs social groups in small numbers and takes them to various locations where she can control the interactions etc. But some other parents have panicked and so session was cancelled yesterday. I don’t think that there will be any outings (to parks or BI’s house) even though respite services are considered essential.

I just got back from my first outing since Saturday. I didn’t even try to go to Superstore. They never have milk when I go, or it is expired in the case. I went to Costco again. This time, there is a line outside (again) but this time I was not at the BACK of the store like Saturday, instead, I was on the side of the store. They let you in as groups. I assume they are maintaining a maximum number of people in the store. It was nice to shop with less people. BUT people are still thoughtless. Stopping in the middle of the aisle or blocking with their carts.

I was one of the rare shoppers who did not have a paper product in their cart. The toilet paper and paper towel was lining the main aisles and other areas, with a limit of 1 of each sanitizing items – towel, paper, lysol, sanitizer, etc – per person. I just wanted milk and produce. Produce still didn’t look the best. But I think that this has made me a more conscious shopper. I did buy some things that I never buy (like deli meat and flour) but I was thinking ahead to meal planning.

Anna, the cashier, explained some of the measures that they have been doing. Every day, the cashiers alternate lanes. Today they are at the even numbers, yesterday it was odd. And I assume major sanitizing that evening. She said that it is nice because the cashier doesn’t have to worry about too many people behind her. Also she mentioned that often people try to cut in with their carts and it is a hazard (the carts bang into the cashier as they try to squeeze past). Anna and I also remarked on how it is calmer to shop there with less people in the store. I almost wish it could be like that all the time!

Luckily, my children are still going to grandparents for a week, so this reduces the stress of meal planning with my picky texturally sensitive eaters.

Now if I can just stay away from all the craze on social media to not fuel my anxiety…