That ASD Mom

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.

COVID19 updates – Demon child

A Little Girl Looking Mad And Furious (With images) | Teacher ...

It is horrible to say this but “demon child” resurfaced. Even though I reiterated numerous time last night, my daughter was “very mad” and acted out that I had put the timer back on the IPad. It is Tuesday, so a regular “school” day, thus the timer goes back on. A few months ago, I learned about screen downtime. It starts from 7 pm to 7 am. So in light of their resistance, I extended the time to noon. So in the mornings, there is no access to their beloved minecraft, save by password input. There is unlimited access to school related apps though.

My daughter was not happy about the return to school work mode and screamed at me like the “demon child”.

“I. AM. MAD!”

“Yes, I see that.”

“I get mad when you don’t give me what I want.”

Get used to it kid. When she first started getting mad this past year, with the yelling and screaming, and some hitting, I was actually amused. I remember reflecting that I must have been horrible to my mother and this was karma. So I wasn’t actually upset when she first said that she hated me. My BI said that when they get upset at us, that 1. it means we are doing our job. 2. don’t take it personally.

Last week, I was so done with the yelling and screaming (about school work) that there were maybe 2 times that I nearly cried. I think that if hubby wasn’t home during this quarantine, that I would have.

As for my “demon child” daughter, I’m sure that some people who know her would be shocked to meet this version/persona. I dread the teenage years or when she gets PMS.

Decisions! Decisions!

Today has been an “I don’t wanna” day. Meaning, I didn’t wanna do mom things other than feed the family their meals, so I didn’t. I spent the day in bed and finished 2 books. As in, I finished one that I started 2 days ago, then started/finished another one. It was a nice relaxing day where I didn’t feel the need to “do” anything. Tomorrow, I will likely kick myself as I need to clean the kitchen (because I hate emptying the dishwasher) and laundry. At least I will not have to fight with children about their lack of interest to do school work of any kind. Hubby has the day off and we can look at finishing what has yet to be completed (from 2 weeks ago) but there is no NEED to do the school work.

I do have to discuss with the school staff about our decision to not send our children to in class sessions for any of the month of June, now that BC has decided to trial/resume class sessions. I’m sure that there are some parents who will gladly send their monkeys to class, whereas I will be contacting yet another MD to get their opinion about even sending our children in September.

One thing that we have struggled with during the COVID19 quarantine is BOREDOM! As I don’t go out much, I am going crazy. I’m tired of food, but we eat because we are bored. I’m tired of Netflix, but there is nothing else to watch. So you “find something”. Thank goodness for new releases, etc. But I look forward to going to the movie theatres and seeing quality movies. (Let’s face it, when we HAD the option to go to the movies, there wasn’t always a good choice there either.)

In the meantime, I must do field the delay tactics of children who don’t want to go to bed and then find another book.

Quarantine Entry – #5

“Online school” has gone better this week. My twins still have their growing edges. My BI has offered to come 1 or 2x a week, in house, to help them do the school work that they refuse or fight me on. So yesterday was the first day for that. While one is on a video call with their EA, the other was downstairs doing missed work with our BI. Then the switch.

Both twins have a hard time with the concept of time, so doing the math problems related to that was on the list for help. It was explained to me that the boy is a linear thinker… needs the steps, while the girl is, like me, visual, and needs the picture. So the boy can write the story then draw the pic, while the girl is the other way; draws the picture, then tells you the story.

Still, there is a lot of yelling. Like just now, to get them to go out the door.

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On a different note, I saw today that one of the members of my church died earlier this week. Death in time of COVID-19 and quarantine…

Death is hard at any time. Expected or not. Death is hard.

Death is hard because it is the final goodbye. You will never see this person again. Your mind goes through all the memories that you have of that person. You also think back to the last time that you saw/spoke with that person. It is possible that you have guilt for the things that were said the last time that you spoke; it is possible that you have guilt for what you didn’t say.

I have always wondered at the obituaries that say “no funeral by request”. I suppose it is because they didn’t like funerals for how they made them feel, or as someone once said, if they couldn’t be bothered to tell me to my face when I was alive, why come to my funeral and say nice things then? In this case, there is no option. We are not able to have gatherings and hence, no funerals. In my previous profession, I was a chaplain. I have had to explain over and over that funerals aren’t for the deceased. S/he will not be able to hear what you say, think or feel about them. Funerals are for the living. So that we, who knew and loved this person, can come together in our grief. That we will share in the gathering, the words and experience of grieving together, even though we may be in very different places emotionally at the time.

Perhaps it may be good that we wait until later to have a memorial service for the deceased, but at this time of raw grief, it is hard to process. How do you say goodbye if you aren’t able to “see them go”? By that I mean, how do we say goodbye without laying them to rest (either by burial or by ritual)? unable

I feel for all those who have lost and aren’t able to say goodbye. For those who aren’t able to travel to say goodbye before or after death. My father died on the other side of the country 15 years ago. I never saw him on his deathbed, me, the chaplain, never got to experience that as a family member, but had the privilege to be able to plan a funeral, to greet the many who knew my father, to be there when he was buried in the cemetery. I grieve with those who have lost loved ones in this time of quarantine. I grieve with those unable to participate in ritual farewell. I grieve for those who don’t/won’t understand.