That ASD Mom

New Year, stilling flipping out

This is the first week of the first month of 2021. This month, we will finally send our children to school in face to face sessions. This is a big deal because the children have not been to school since Spring Break 2020.

We have been doing “blended” sessions, with online classes in the morning and we were supposed to send our children to school in the afternoons 3 days a week. After disastrous sessions this past fall, we have decided that we need to send them to school for my sanity and structure for them.

This morning, their EAs are working different hours so that they can be present when the children go face to face. I explained this to my daughter and she flipped out. So I had to deal with her flipping out and snapping at me, while trying to hear the teacher explain the location to meet when I take them to go later. So daughter was flipping out and yelling, so much that hubby had to come out of his office to offer support, while son was in the next room. Son had to tell teacher that daughter was here but she was “having a hissy fit in the other room”. (face palm)

Daughter was not happy and felt that she would not be able to do online school without her EA. IMO, having the EA online is not a help, as they keep telling my kids to listen to the teacher, when instead there are times that the child needs a hand holding and mommy just won’t do. I get that the EAs are supposed to encourage independence and responsibility to do the work but sometimes I wonder what the point is.

Genealogy “Wars”

In my “spare” time, I dabble in researching genealogy with a particular interest in Mennonites from Prussia. I use various online platforms for this; FamilySearch, FindaGrave, Wikitree. All of these platforms have a different goal.

FamilySearch is run by the LDS (Mormon) Church and has a lot of records. I prefer this free service as they have a lot and I don’t have to pay for it like I would to use Ancestry.

Find a Grave was started “in 1995 when founder Jim Tipton built a website to share his hobby of visiting the graves of famous people. He found that many people shared his interest and quickly opened the site for all individuals (famous and non-famous) with a mission for finding, recording and presenting burial and final disposition information worldwide.” This site is now owned by Ancestry. Users create memorials from local cemeteries and you can contribute photos of tombstones, personal photos etc.

WikiTree was started with the idea that we create a universal tree, and it is free. “As the creators and hosts of the WikiTree website, we pledge that our mission is the same as that of the community: to create an accurate, single family tree that will make genealogy free and accessible for everyone.” Wikitree requires/prefers that profiles are sourced with records (other than because they are my family member).

I started on Findagrave as I discovered in my family research that a lot of the relatives were buried in nearby cemeteries. From there, my “hobby” morphed into me taking thousands of photos to post on FG and helping others to find the resting place and history of their loved ones. I have been on FG for 6 years, but recently do more on Wikitree. FG has the ability to link family members but not all are listed on FG, due to cremation or lack of records, whereas you can list whole families on Wikitree.

There are policies for usage of all of these sites and users are required to adhere to these rules of conduct, as they are all meant to be collaborative. There are problems with some of these rules as they are interpreted differently by various users and some users are not exactly helpful or friendly. I have had issues with some fellow Findagravers for this reason. For some, the purpose of memorials is to “collect” them. For others, it is to honor and remember their family members. There have been complaints about the “obituary” hunter — people who post memorials based on obituaries, thus robbing family members the privilege of creating a memorial for the deceased.

Other users have issue about style or format, or pickiness about genealogical information. While I have now been “doing genealogy” for that past decade, I will admit that there are still things to learn. There are also ways to communicate with others when correcting them, helping them, etc. A few years ago, I met a fellow graver that I will call Mary, in person and we went to a Mennonite cemetery where she grew up and photographed it all. She helped me navigate the site and learn about how to use it, create memorials, where to research information, etc.

Last week, I waded into a war with a fellow user, that I had never heard of before. This person, J, had sent a few edits to me and M, which we both declined and A disagreed with our rationale, stating that we were wrong to list a Mennonite with a certain birth location because the country in question hadn’t been founded until long after that person was born.

So to explain, on Findagrave, there is only the option to list a location by what it is called now, whereas FamilySearch and Wikitree will give you the options for what that place was called in the years that you are listing…. ie. if a person was born in 1841 in Ontario, the options are… Canada West, British Colonial America from 1841-1867, or Upper Canada, British Colonial America from 1791-1841, but Ontario, Canada from 1867 -onwards. If I wanted to put this location on Findagrave, it would be listed as Ontario, Canada but I could either a) leave it blank and write in the biography section about location, or b) list as Ontario wit the explanation in the bio.

So… this is sort of what happened with J and M. Mary responded to the repeated edit request and the interchange was heated and J’s responses were rude. Mary informed me of this exchange and asked if I had any edits from J yet. I did but had not done anything with them. So when I did find one, I consulted a college friend who is now an archivist at a Mennonite Heritage Centre to determine what I should do. Was I right in my assumption to use what it “is currently understood to be” or was the birth location actually somewhere else (Russia vs. Ukraine). I declined and politely explained similar to what I wrote above and noted that I had consulted an archivist about this.

Inside of communicating through the site, J sent me email to my personal email (that I use for genealogy) a long, rude letter correcting my understanding of birth locations, filled with FULL CAPS and even insulted the archivist, saying that I should tell them who it was so that they could “straighten [the archivist] was”.

I was shocked, upset and offended. Mostly upset. I got 2 of these type of emails and so I refused to touch any more of the edits. They then sent me another edit for the 2 that I had declined, as well as 8 more. I told Mary. She told me that she had reported J and that I should do the same. After sitting on it for a week, I finally reported this “harassment” to the site.

This is one the reasons that I prefer Wikitree. People can PM you or post on the wall of the profile but I have never gotten this type of message from Wikitreers so far. I also like Wikitree because you can join projects that range in theme. I am currently a member of the “Global Cemetery project”, “Notables”, and regional team. I have taken part in a few of their weekend challenges. They have a “clean up” challenge where you fix profiles that are linked to wrong people, have the wrong dates, parent is too old/young, etc. There are “source a thons” where you clean up unsourced profiles, that were likely added by someone importing a GEDCOM or tree, or just someone writing “personal knowledge of….” but not adding any records.

Living people are blocked. This can be problematic when a notable person dies as only the creator or moderators have access and then have to make it public, otherwise duplicates are created.

So this is what I do for “fun” when I have a minute (or hour) to myself. My extended family (mine and his) all think it is an odd hobby. “Why are you doing research on people that you don’t know? or aren’t related to?”

As I have researched a lot of my family and hit a brick wall (paternal), I have turned my attention to helping others. In the course of doing this, I have learned a lot about people that I would otherwise not know or read about, and it helps me to understand history about places where I live or the tradition behind somethings.

Life is never dull.

There are some weeks/days when you know that you should say something but you are too tired to do it. Last week, I bought a new refrigerator because the one in my kitchen likely came with the house (2002) and the freezer decided that it didn’t want to freeze things solid any more. Luckily, we have another fridge/freezer downstairs where I keep “overflow” items like milk, juice and cheese. We also have 2 deep freezers; 1 that I inherited when I married hubby (apartment size) and 1 that we bought a few years ago (full size), so we are good. All of these are stuff to the brim and so we are eating out of the freezer for the next few weeks. But we are lucky that we have the ability to do this, that we have the financial resources to do this, whereas I’m sure there are many who do not.

I live in BC where the COVID 19 cases are high, the health advisory rules are murky and we still live in this dis-ease. I think that we are all tired… tired of wearing the masks, tired of seeing our neighbor doing things that seem to be contrary to what we have been told, tired of the Trump fiasco, confused about why these rules are here but not there….. just tired. Even our own premier didn’t get the rules and was planning to go to a family gathering for the holidays…

My kids have been doing online learning. It is actually a blended program meaning that the kids are supposed to do online learning in the mornings then 3 days a week go face to face. We have as yet to send them face to face. I was ready at the beginning of this month to send them, but then we hear that contact tracing wasn’t working well, so we opted not to. I am tired of my children yelling at me for “making them do the school work”. I am tired of being an “unofficial EA” when they both have their own EA to help them.

I still think it is ludicrous that we are allowed/supposed to send our children to school and that there is no mandatory mask requirement for their time in face to face classes. Yet I have been required to wear one at the grocery store, doctor’s office, etc or go virtual when possible, but our children do not have to do this. I get that there are reasons for as well as against, but perhaps we should have just said, let’s just not have schools until this is over. This year is a wash any how. We didn’t bother with the school photos this year as they weren’t going face to face and the quality of school pics usually sucks. I often take a better photo. And there was certainly no class picture for this year.

Last week was also a gong show because we had workers rip up the ceilings in my main hallway and 2 main rooms of my house (kitchen and playroom) so that they could put in new pipes to better heat my childrens’ bedrooms. Now we are waiting for the drywall person to come this morning to fix the ceilings.

Life is never dull.

Good news and rant – genealogy

so my profile mentions that I “dabble in geneology”. What this means is that when I was too pregnant to move, I decided to find something to do that didn’t require me to move too much and I renewed my research on my family tree. This was needed as I had married into a very large family and wanted to understand who all the people were that I met at family reunions.

Part of that hobby has taken me to cemeteries were extended family members are buried, and now I have exhausted a lot of my tree research due to brick walls, so I take photos of tombstones and post them on websites for other family members/”cousins” to find.

I have now been doing this for 9 years or so, and on occasion, I get an email from someone far away, asking for permission to use my photos that I posted (on Findagrave.com) in something that they are planning to publish about a certain person. I got such an email last week asking for permission and citation information (meaning what name to use to credit the photo usage).

This is kind of cool as I retired from healthcare 10 years ago and took photography courses to determine if that would be my second or third career (depending on how you look at things) but ended up being a mom instead. When I was in photography class, one assignment was that we create a mock up webpage of our work, with a “business” name and everything. I have kept that “business logo” and figured out how to watermark my cemetery pics.

I watermark my photos with my name and the date that I took the photo. This has been helpful for 2 reasons; I sometimes duplicate my work on later dates (and don’t realize that I have been there before) and I have had my work taken from websites and reposted as their own on findagrave. I have had to report people for doing this as it is against policy of FG. I have seen this done on other memorials (not my pics) and have informed the other photographer who replies that they don’t care. I do as I spend a lot of my time taking the photo and also doing the research, and the fact that someone else gets credit for the work, is just wrong.

Ok rant over. Didn’t realize that I would do a rant today but … it happens. 🙂

Update -November 2020

Yesterday, I took my son to a local dental checkup. He was scared but did well. Last year, when we went to a special need dental clinic in Vancouver, we were rear-ended on the way home, hence he associates car accidents with appointments, dental in particular. Ironically, this morning, guess what photos showed up in my facebook memories feed. We were on our way home in rush hour traffic (4 p.m.) after being at the dental office who were late to start the appointment and then my son was hesitant to open his mouth and they reprimanded him for it. So not a fun experience and then we were at a traffic light with a car in front, and rows of cars on either side. I looked in my rear view mirror and saw the car 2 behind us, hit the one behind us and told my son to brace for impact. Luckily, he was absorbed with his tablet (a first for us as I never let him have it in the car) so he had no idea and it felt like a big bump.

Today, I took daughter for a 5 minute drive up the street to the local hospital for a cardiology follow up appointment, rather than the hour long drive to where the other dental clinic is at. We were done in less than an hour and the only hiccup was that daughter is very upset about not covering up her scar.

This is a scar that she has had since 2 weeks after birth, and they had to recut along it for this past procedure. I wonder what this does for her identity. She has had this other scar for her whole life, but she was so young that she couldn’t remember or process it. We were even in a photo shoot a few years ago about the scars that people have with the theme that we are “more than our scars“.

My daughter was so distressed about not having another dressing put on to cover it back up, regardless of the doctor reassuring her that it is healed and “looks good”. Daughter’s concern was that germs might get in.

I often wonder about things.. is this part of being 9, or the autism, or all of it?

Halloween

It has been almost a month since our return home from surgery. We have resumed online school, the yelling, the protests about “doing work”, the stress.

Over the past month, we have been to various follow up appointments. Hubby had a choice; drive an hour into town with her for a follow up appointment or stay home with the boy and do online school. He chose to do the medical stuff. I found this funny because a) hubby is a techie and hates the online school thing, b) hubby hates hospitals and would barely stay in my office when I worked at a hospital

In the end, I stayed home and did online school that day, and he went to the medical stuff. I liked that I didn’t have to leave home and fight for parking.

In the end, the kids are tired of staying home. “Tired of the virus”. This past weekend was a bit hard because I had to explain repeatedly to my daughter (and both) that we were not going out trick or treating. She was not happy about that. I find this ironic also as daughter loves to get the candy, but doesn’t eat any of it.

I organized a mini scavenger hunt of treats in their rooms. They got Kinder Eggs. She gave the chocolate part to her father and played with the toy. While in hospital, she saw a hexbug and so we got some for Prime day. Recently she said that she wanted to make a track and race them. So, on Halloween day, I drove around and found the NanoZone track and included this as part of their treats.

Hospital adventure – Part 2

I was actually relieved to be home instead of the hospital last week. Even though the surgery was something that I had been anticipating, dreading, hoping for, I considered Tuesday’s drive to the hospital as a practice run. I was relieved because we had a cat wearing a cone of shame who needed eye drops for his scratched eye, and I wasn’t sure that I wanted to saddle my inlaws with that task. I also wasn’t sure that we were really prepared and needed to reassess what to pack for that day.

Sunday night rolls around. Inlaws show up to look after twin B while twin A is in hospital. One asks if it has been confirmed. I frantically call the hospital to verify that there will not be a repeat of the previous week, and was told that as of that minute, there are no impediments, but that doesn’t mean that we won’t get bumped again.

We go through the motions again; bathe girl, pick clothes to wear, pack a bag for the day, pack a suitcase for the week, pile into the car and off we go. We check in again to the same floor, and get the same nurse. “We’re giving it another try this week eh?” she says.

In the end, daughter is wheeled off to the OR and we are told that we have 4 or 5 hours to kill. I figure that I will go crazy hanging around and we take off in our car and end up at a McDonalds, where I have pancakes and rediscover the hot chocolate. Hubby had told me a few years ago that Tim Horton’s and McDonalds switched suppliers and so the hot chocolate that I loved from Timmies in now at McD. But when you are a Timmies’ girl at heart, old habits are hard to break even when the service is slow and the food is so-so. McDonalds, you have a new convert for your hot chocolate.

After 3 hours, we end up in Richmond, looking for a book store that is no longer there. In between trouble shooting/coaching Grandpa about how TEAMS works for my son to do school online, we end up getting a call telling us to come back. Surgery was shorter than we thought, but that’s a good thing, right? Off we go back to Vancouver to find our daughter and hear from the surgeon about how it went. Things were fine; no complications. Baby girl (who is now 9, I know, not a baby) will be in ICU over night and then on a ward. She is sedated for the first day, so we both go home and I sleep in my own bed dreading the week to come.

The hospital has a “new” building and the rooms are separate so that each patient has their own rooms. There is also a pull out couch that essentially becomes a single bed for the parent to stay overnight. The plan was that I would stay over night and hubby would stay most of the day. In the end, she was in the hospital for 4 days, so I slept there 2 nights only. The first night post -ICU, she did not sleep much at night as she said that the area where the drainage tubes and pacing wire were.

Perhaps it is the fact that she is 9, perhaps it is the fact that she has autism, but it is hard to figure out when/where she is in pain. She referred to pain in her elbow but meant her shoulder. A nurse suggested that because they are kept spread eagle, arms spread out during surgery, that perhaps it pulled a muscle that she didn’t know she had. Her textural sensitivities were also a concern, what/if she would eat, that were a challenge. In the end, she did not want to eat much and when she did, we had to mix in meds after which, she did not want to finish the item as it tasted funny or was gritty.

We brought her home yesterday and managed to get her first med into her after quite a fight. I needed the reinforcement of my husband to help me with dressing change as she “didn’t want anyone to see her scar” nor did she want to look at it. I am required to do 1 dressing change a day and the pharmacist managed to get the doctor to agree to 1 med a day. I managed to get the pill into her by crushing it and mixing with sugar.

We will see how the rest of the day goes. She is dressed and is playing on her iPad for the afternoon.

Hospital adventure – part 1

This past 2 weeks have been hard. Last Tuesday, September 29th, my daughter was scheduled for her second open heart surgery. We were told that an emergency case, a baby, had come in and we may be bumped. Please be on standby tonight and tomorrow morning as we don’t know if your operation is a go. We will call by 10 pm.

10 pm comes. Phone call says that doctor wants blood work and they will call us at 6am. We prepare. Give daughter a bath with a special sponge. Give her meds. Go to bed early. Wake up with an alarm at 5:45 and wait for a call/

At 6:10 am, I started phoning the hospital. The OR confirms that yes she is still on the slate. Shit! We were supposed to BE there at 6:30, but that is the time that we pull out the driveway after cramming a backpack with lunch, and dressing a sleepy girl.

We get caught in traffic to get onto the highway. The phone rings. It is the nurse from the night before apologizing and explaining that the bloodwork was delayed and they STILL don’t know what they are doing. Are you still coming? The doctors will know by 8 am. Well GPS says that we will be there in 32 minutes. Ok, we will let them know.

Still driving. Panicked and stressed that this surgery will not happen. We are 10 minutes from the hospital in downtown Vancouver. I notice that I have missed a call from the hospital. I had gotten a new phone 4 days prior and still didn’t know all the settings, plus I’m “deaf”. It is a message from a nurse berating us for being late as “don’t we know that she is supposed to be in the OR in 30 minutes? I suppose you are driving or in the parking lot.” I didn’t bother to figure out who or where to call. We use the hospital valet service for the first time ever and discover to our delight the province of BC has mandated that hospital parking is free! One less thing to stress about.

Rush in to the correct floor, after an annoying encounter with security checks on COVID issues. Get checked in. Vitals are done. Daughter is in a hospital gown and is playing a game on her tablet. I remember that I was supposed to give her meds (ointment up her nose) and she fights us on this. Finally, a doctor comes and tells us that it likely isn’t going to happen today. The surgeon comes and apologies and says that the bloodwork was delayed and he just got results 10 minutes ago and needs to operate on the baby. We are frustrated but I respond with “we get it. 9 years ago, she WAS that baby.”

We get a starbucks gift card for our troubles. We muse on this. The nurse tells us that sadly they give these out more than you would think. I tell baby girl that I’m sorry that we came for nothing and we will be going home. She is not happy with that, as she likes her hospital gown and bracelet. I promise her McDonald’s pancakes.

In the end, we got home just in time for her to attend her online (chaotic) class, and we have to wait to see if the surgery will happen on the following Monday.

online learning agony

So we have been doing “blended learning” which is online school in morning and supposed to attend in person a certain number of afternoons a week. We have opted not to send our children at all.

Online learning is a gong show. We have 20 9/10 year old children using Microsoft Teams. So far, we have had issues with class members (not us because daddy and I are tech saavy) not being able to get online, not finding the right meeting, creating numerous meetings and so NO one knows where to go, kids not muting self, leaving video on which clogs up the feed, a lot of “I don’t know what to do” or “I can’t find that”, and in the end, I have 2 very bored children. One likes to tell me repeatedly and loudly.

My daughter is frustrated that her EA is not physically with her and mommy has a different method of helping her learn. Today, my daughter refused to even try to do the assignment. In the end, we had to separate our children. Dad apparently gave them a talking to about putting in the same amount of effort for their school work as they do for their video games. They both did the assignment on their own. I assume it had to do with leaving them alone to do it.

Anxiety and the future

My son has anxiety. This has been heightened due to “the virus” and the quarantine process. He can’t go to play with his cousin and his cousin is not able to come here. We are not sending our twins to school, but have opted for the “blended version” of online/in person attendance. I have received an exemption from sending either twin to school until November 1st as our daughter is scheduled for her second open heart procedure, her first being at 8 months. So to be safe, I refuse to send either to school until after it is over and even then I worry because after 2 days of “orientation” at local schools, there are already 2 reports of 2 schools having COVID cases. *sigh

Every night, we put our children to bed. We get them snack, they whine and prolong the going to bed part. I send up a cup of water with them. Lately with the heat, they both protest putting on pajamas and sleep in their underwear only. They pick a book. Hubby and I take turns putting them to bed (alternate which kid we put to bed unless only 1 parent is home). Read to them, kiss them good night.. figure out if/where a cat is, is it staying there or coming with me. Turn the lights down, sometimes listen to protests of “stay with me, I’m scared”, go down stairs… wait about 2 to 10 minutes and some nights, we hear from the top of the stairs “I’m scared”.

Last night, “I’m scared” came from the top of the stairs after 10 minutes.

What are you scared of? we ask.

I want to come down and tell you. He comes down and straight to me, even though both of us are in same room. (Mommy is a softie.)

Ok, what are you scared of?

I need a hug, he says.

I’m scared of life. That I will change my mind when I’m older and want to leave here.

This conversation is one of many ongoing ones. M is scared of change. I assume that is part of his OCD and/or autism. He doesn’t want us to sell the house. He doesn’t want to move out. Last week, he was upset that his twin said she would move out of the house (but buy the vacant lot next door and build a house of stilts, like in Diego, so that it would be safe when the floods (?!) come. So at night, he worries about things as this is when he isn’t distracted by activities, going outside, TV, books, or his iPad. This is when the thoughts come.

They range from a video he saw today, last week, or even a year ago; (He has a long memory.), to worries about tomorrow, next week, eons in the future; his tutor’s cat that went missing last year; the list goes on.

Even though I reassure him that this is not something to worry about (moving out) because a) we aren’t planning to move anytime soon. (We haven’t told him that we might move when we “retire” in 20 some years time. b) we aren’t asking him to leave. He is welcome to stay as long as he wants. c) he is not required to stay here either, he may change his mind and that is ok d) this is not something to worry about at age 8, almost 9, and he has 10 more years to think about this.

Of course, this is replied to with “I would feel better if I had M I L K”. (spelling it out)

Not all evenings go like this, some times he is up until 10ish with his thoughts. Other nights, we hear nothing from either of them.

I don’t want to have to medicate either of them, as so far we have been lucky that they don’t even need meds for their heart issues, but I will worry about that should the day come.