school – That ASD Mom

Year End Reflection

Today is the last day of the year that was 2021. I will not do a review of news events, celebrity deaths, and other generic highlights that other people or news outlets are doing, but plan to think about 2021 in relation to me and my family.

2021 began with us still in a pandemic. Listening to American news as we heard about the mess that the 45th President made of the US economy, thus impacting the Canadian economy and day to day life. Hubby was still working from home, kids were still doing online classes and I was tearing my hair out trying to balance all of this. We finally had enough and removed our daughter from brick and mortar school to begin home school learnings. I hired my ABA team member to do this as I knew that I was not cut out for teaching her full-time.

I would say that we limped along through the 4th wave of the COVID-19 pandemic, the hemming and hawing of our local government about health measures; the closing and re-openings of restaurants, bars and large event gatherings such as religious services, sports and concerts; the fluctuating and backpedaling of various health edicts; the schools changing their regulations and protocols; the border restrictions; and through it all, I would say that I have been anxious and depressed at the same time. As we enter the 5th wave, and advent of Omicron, it continues.

We have not been to church since March 2020, although members of our church choir have asked if/when hubby will return. Our church has changed worship formats and in person worship locations due to renovations and seismic upgrades. I have rejoined my son’s school PAC (Parent Advisory Council) but we aren’t able to do much of the usual activities due to restrictions at the school. I have attended numerous zoom or other online meetings over the past year and had to confront my abilities and obstacles of my hearing loss. Technically, I have a “hidden disability” as it is not obvious when you look at me. I have detailed in various blog posts about my learnings/struggles with COVID life (masks and communication).

I have not seen my mother in 2 years as she lives on the other side of the country/continent and I am not comfortable to travel in an airplane any time soon. It had been my hope that when my twins turned 10, that I would take them to my home province in the summer so that my side of the family would have a mini reunion and summer vacation on the beaches where I grew up. I had hoped to show them the nooks and crannies of the small town where I lived, see my childhood home, meet some of my childhood friends – but that is not likely to happen for a while yet. It actually upsets me to see the posts on social media of the people that went to see their family members in other provinces during the summer or winter holiday seasons. While I’m sure that they are taking precautions, etc, we know that there are issues with the spread of COVID-19 and now, Omicron, as infection numbers are up globally.

I have binged more Netflix and now Amazon Prime than usual. I usually hit a slump in my reading about the beginning of summer, but this year it lasted longer than usual. I usually have a challenge on Goodreads where I set a goal of how many books I think I will read in the year, but haven’t met that one this year, not by a long shot. I had set a goal of 50 books (based on my usual trend) but have only finished 31 so far. I now have 2339 book on my “Want to Read” list, but only 967 Read, and 9 DNF (did not finish). I think the reason for this is that reading involves active processing in a different way than television watching does. And while I stream my favorite radio stations most days, there is no way I could do an audio book as that would require concentration in a different way than radio/music.

2021 has hit me in the face to really process what my hearing loss is and how it has impacted my life. To recap, I was born with a hearing loss. We don’t know how much was genetic as there is an entire set of cousins with hearing loss (maternal side) but I don’t know what type their loss is. I have discovered terminology from Reddit groups that describe me as “Mono-hearing” (meaning 1 ear). I have worn aids since the age of 4, starting in the late 70’s. Over the decades, technology has changed significantly. I heard birds for the first time when I was almost 10. My hearing loss has been described to me as “inner ear damage”, “nerve deafness” and now this “mono-hearing”. This means that a cochlear implant would not help me; that my left ear has little to no hearing (I think it is now 10%).

So over the years, I have learned to adapt. I don’t know what I don’t know. I understand some concepts in theory, like hearing “in stereo”, the “hum of the city”. A lot of this is from just living my life, or reading books. I remember a phone conversation with my best friend of 2 decades (we met when I did my Masters degree) where she told me that one day she stood on the street corner to listen to the hum of the city (as she is in Ontario while I have moved all over the Canada) and a coworker asked her what she was doing (spacing out instead of crossing the crosswalk, or lost in thought). She explained to her coworker about a recent conversation where I had told her that I didn’t really “know” what the “hum of the city” is in the way that she does, because I don’t hear what she hears, in the way that she hears. So she was consciously giving that some thought during her lunch break.

2021 has made me confront some of the things that I take granted.

I have begun to follow things on Reddit forums and twitter more and more these days, related to the state of our provincial ups and downs (COVID and policy related) as well following local activist groups so that I can keep up to date about issues related to my children and their needs/rights. Our province has decided to change the funding model used to assist my children assess services for their Autism, but has been sparse with details (amounts, who will regulate/distribute funding as gatekeeper, and what type of training these persons will have) about how this will work. Most parents are upset as the structure that most of us have researched and worked hard to set up will be ripped apart by the changes. My town’s mayor has made some interesting/not-so-popular choices re: budgeting and infrastructure.

One of the twitter users that I follow is a vocal member of the disabled community who talks about their struggles to access services as a physically disabled woman living in social housing. I have been made aware of issues that I have luckily not had to face (as my disability is different, and I have a different economic status) but it is good to hear these voices so that I expand my thinking but also know that some of what I have experienced in my life is not okay.

I remember when I was graduating from my Masters program at the age of 27, (I did it from age 23-27) I complained to my mother about how hard it was to find a job in my field. My mother’s reply was “well, you have to remember you have 4 things working against you; 1. you are young. 2. you are in ministry where the jobs are slim and the denomination has issues 3. you have a hearing loss and 4. you are a woman.” I remember going “oh yeah, I forgot the part about prejudice against women in ministry”. I knew that I had a quirky way of looking at the world so my sermons/perspectives were often met with skepticism by mainstream players in the field, but I had forgotten about the impact that some the obvious could have. My hearing loss helped and hindered my work. My being a woman helped and hindered my work. My being young and having this as my first career also didn’t help. In the conversation with my mother, my hearing loss was inconsequential until she reminded me. A lot of my friends have told me that they forget about my hearing loss, until I remind of the car analogy, “pretend I’m driving a car and you are the passenger” when you talk to me (to determine my good ear) if you can’t face me.

2021 and the COVID communication issues have reignited my ire about the fact that I’m disabled but the government denies me the ability to get the disability tax credit because I don’t fit the criteria. I don’t “need” the DTC, but as I don’t really know how or if I can return to the workforce due to my kids and my hearing loss, it would be good to know that I would have “something” especially if I am entitled to it.

This past week, it was announced that there will be delayed returns to school across our province (BC). We are reverted back to one of the phases from 2020, allowing children of essential workers and those with special needs (gov’t wording was ‘essential needs’) but did not clarify what the second group is. This is reactionary due to the soaring numbers post-holiday festivities. Omicron is now raging and persons who have been tripled vaccinated have been infected. Public sentiment is that there is no safety from this regardless of the measures that we take; anger at those who feel the need to exercise their freedom of self-determination and opt not to get vaccinated due to their beliefs that range from COVID being a hoax, paranoia re: governmental control, etc. (I have had to instruct my hubby not to engage with certain members on his social media feed who hold these opinions as the interactions end up creating more ire on both sides of the conversation/debate.)

In the end, we have decided that the risk of Omicron infection is too great. Our children are FINALLY booked for their COVID vaccinations in January, but we will delay the return to public school forum and continue with small bubble/home school options for both in the weeks to come.

I hope that 2022 gets better than the past 2 years. I’m sure that this is nothing compared with what our parents/grandparents dealt with rationing, survived wars, and various economic ups and downs, but it is still hard at times.

February Update

Since my last post at the beginning of January, things has careened on down the roller coaster that is life.

I continue to have a text relationship with my neighbor to schedule our cats outings. Apparently, his cat spends the time indoors staring out the window at our house or he is at the door trying to defend his territory from our cats. When they do meet, (my 2 and his 1) there are usually fights. But then there are fights with my own cats, likely due to hormones, or cabin fever, as H is pissed with me that I don’t let him out and fights with S. *sigh

My 47th birthday came and went. Um… my birthday present was…. oh yes, us taking the kids out to see the final week of GLOW Langley. Due to COVID-19, they turned it into a drive thru experience. We took many pictures and listened to Christmas music. It was nice to do something with the family. We got mini donuts and my son discovered that he likes these donuts as well.

Last week, I took him to the Tim Horton’s drive thru for timbits. All chocolate of course, as they are his favorite. He saw a picture of the chocolate dip donut and asked for one. I asked if he has had one before. He had not. I explained that the cake part would be different than Timbits or the mini donuts. “Why do you think you want one?”

His answer was ” I like chocolate and I like donuts… so….”

We got one. I asked for some and he refused to let me have any!! He liked it that much! so WIN…. he tried and liked a new food.

So back to my update; after my birthday came the first week of February. I had been at my wits end about the online school thing. My daughter was not doing well. I was struggling as I bounced back and forth between rooms and my kids’ screens where they take the same class. I said to my husband. “I need help. But I don’t know who I’m supposed to ask. Is it the school? the principal? the teacher? the BI on my home team? the EA? who?”

I attended the online sessions that were offered by BCEdAccess. The sessions were part of a grant that they were given to facilitate online social groups and support for parents. I signed up and hubby attended with me from time to time. There were various topics for their COVID-19 Outreach Conversations and in advising a parent about his struggle to get appropriate support for his child, it clicked for me that I needed to go back to basics of advocating for my child. There is a tier system of who and when to contact.

I started with the teacher. Specifically, writing a note in my child’s communication book. The incident was that they were to create and draw a character and then write a detailed description of the character. The purpose of this exercise was that they would then read their description to a partner in their class who would draw the character based on what they heard and then compare to the original drawing. I set the kids up with the WORD program to type it out and my son shooed me away, so I went to help his sister. When I returned, I discovered that even though the teacher had clearly explained what to do, 3!! times, that my son had written a story instead.

I lost it! I may have grabbed the tablet to verify what he had done, while loudly telling him that it was wrong. He then melted down (a rare thing) and it took 10 minutes to calm him down, thus missing the exercise experience totally.

I wrote a note in the communication binder to the teacher about his lack of ability to process and follow the instructions in this incident. She replied on the phone that she was shocked to read this note. Obviously the experience of school online as seen by me and kids is quite different from what the EA and teacher see. In my daughter’s case, the EA knows that my daughter is screaming and under the table refusing to work.

Long story short, I couldn’t do this anymore. After a meeting with our home team, hubby and I decided to go with the suggestion that we pull our daughter from this online learning and do home schooling with our home team. We did consider the full time school route, but as they already had 2 teacher changes this year due to online/COVID issues, I didn’t think that making them have to adjust to a third would be a good route.

It has been 2 weeks since we have pulled her from the public school and I am less stressed as I am able to focus on the efforts of the one twin, rather than both. In these COVID times, everything is not normal. Shopping, working, school. Nothing is normal. I hardly hear from my friends. I only see people in person when I go to the store.

We have learned how to do online meetings via Teams, Zoom or other means. I have had conversations with my mother and more with my sister on the phone and video. Video calls with either of them are rare so I’m glad that we have tried. I have learned how to use the public Library online books. I have also purged the house more. The clutter also stressed me out.

It took me a while to get back to reading. After the stress of Christmas, and the stress of children doing school, my brain could only binge Netflix (Bridgerton) or work on geneaology stuff on WikiTree.

So on the day that we pulled my daughter from school, I was also very stressed as my “birthday” present was to be delivered that day and I was terrified that we would have to send it back. I had bought a new French Door refrigerator in December. I had never liked the fridge that came with the house. It was likely as old as the house (2002) and we never seemed to use it well. Food was wasted, etc. What finally prompted me to look for a new one was the fact that the freezer decided to thaw spontaneously.

So I was fielding a call from the principal while the delivery men brought in the new fridge in pieces through the back door. (Hubby had to remove the entire door and screen so that it would fit.) I was so happy and elated that it worked and the old one was gone, as the refrigeration part decided to die the day before the scheduled delivery.

I had also been told that due to the COVID that the manufacturers were not in full force, so there were back orders everywhere. If I didn’t get it this “cycle”, the next delivery slots wouldn’t be until APRIL!!! So, I was a little stressed to say the least.

Things are better these days but autism still rears its head even today. Or is it that we have 9 year olds. My son was on the floor hollering that he was NOT going out with the BI for session. It’s a PRO-D day. I had to call hubby for reinforcement as there was no way I could wrestle my tall son into shoes and jacket.

So I have a few hours to myself. I may go out with hubby on a rare lunch date to an ACTUAL restaurant. Of course, I will have to clean the kitchen, and do laundry as I have put off doing both for a few days.

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.

2020 Quarantine – update

Just realized that it has been a month since my last post. Not like I have been “busy” to write, as I’m on the computer everyday doing geneology stuff, etc, but it is hard to process this all.

So hubby is able to work from home as he is tech support. I send him off to the local park for a short walk at lunch time so that he gets fresh air and that helps the cabin fever aspect. I have only been to the store a handful of times for essentials like bread, milk, and fruit/veggies. We are fortunate (?) to have 2 large freezers that are stocked/overstocked. I have had to get creative with what foods we eat/put together as a meal. But yes, this is how I feel since we have been home ALL the time. I notice that the dishwasher runs more often, I’m forever cleaning the kitchen (but then I didn’t do it all yesterday, so I have more to do today, mostly because I didn’t want to unload the dishwasher.) 92399036_3576309325718196_1575336906877566976_o

Last week, I finally got a handle (really?) on the school work thing for my kids. I have adopted a “whatever they get done is fine” attitude, as I know that this school year is a wash. Trying to get my kids to do school work is hard at the best of times, but this online/quarantine thing is worse. Don’t get me wrong, they LOVE their tablets/iPads. They always have, but these school assignments are not their cup of tea. My son loves the “idea” of Prodigy but they are too hard for him to do at times, and then he freaks out and I have to calm him down. (while I’m trying to do my own stuff, and his sister is complaining about her work.) Even though they are twins, I did not put them in the same class as I find they distract each other, so their work assignments are different.

I had to wade through all the emails and freshgrade to figure out what I supposed to get my kids to do. What to download for which kid. In the end, I had to print stuff out and put them in separate folders labelled for each kid.

If you have read this blog and the background before, you know that my twins have ASD, so they both have a home team and a school team. I should email the school about the EAs and ask about that. How, if , whatever….

So it is now 9:30. On Easter Monday. This is not a stat day for hubby so he is in his office working. Kids have decided to assemble the second lego chicken that the Easter Bunny brought yesterday but will soon resume whining for their tablets. I was woken up at 7 by the boy. I have since fed cats, let them outside, fed children, refereed at least once, folded and put away laundry in one kid’s room that sat there since last week, stripped all 3 beds and put on fresh sheets, managed to have my rare shower and got dressed. Laundry is now full of sheets. Next I have to tackle my kitchen. I don’t wanna but will need to before lunch as I can’t work like that. Plus there are probably few clean dishes in the cupboard. 20200413_093714

Daughter has resuming tablet/iPad requests. Guess I gotta go. More musings later.

Connecting the pieces … still a work in progress

Last week was parent/teacher interviews. School has only been in session for 4 weeks with the children being in their assigned classes for 3 of those. So it is a bit early for a “this is how your child is doing, let’s fix this” and more of a “let me tell you what you need to know about my child to help them succeed” chat.

One thing that the teacher told us is that “we (the teacher and EA) are starting to figure her out”. The example that she gave was about my daughter’s creativity. L loves art. I mean LOOVVEES art. The teacher told us that L made a ghost and the other kids in the class were impressed and started to copy her. When it was pointed out to L, she didn’t connect. They told her “Look! Look what you started! They all made what you made.”

It wasn’t until they took one student to her with their ghost and said “I liked what you made and I made one too. How did I do?” that L started to get it. But she is still working on connecting the pieces and connecting to the other children. It is interesting to see this piece and to have words to explain what her father and I knew about her.

(She used the empty apple sauce container from her lunch as the “form” for her ghost.)

Don’t screw this up

So i’m finally back after a month. It’s been a busy month but mostly with anxious anticipation as we wait to hear what support hours will be assigned to my children for next year. If they went down, we were planning to pull them out of public school and go the route of Directed Learning. This is apparently different from homeschooling, but is a form of home schooling nonetheless.

I was told yesterday that their hours will stay the same as this past year. They barely have 20 hours a week of support at school. This means that regardless of the fact that they have the G designation that there is a slim chance of getting a qualified person to take the position. My children are approved for ABA Support in school, vs an Education Assistant. This means that they would get a person who is specifically trained to work with autism and not just someone who is trained to work with everything. My children need redirction regularly during the day. We joke that my daughter is easily distracted like the dog in UP (Squirrel). And while they are doing better than they were in kindergarden, they still need the support or there are problems. Outbursts, flopping on the floor, hitting, elopement, and the like.

It seems that the behaviors are getting worse this past month. I have mentioned this to other parents and they agree, so maybe it is just the time of year and not just me and something I am/not doing.

So now I have to trudge into the world of advocating for my children. I hate this. I’m not good at it. In general, I am the type of person who is loud and says too much, or I’m timid and say nothing for fear that I will stick my foot in my mouth as the loud one (or inexperienced one) and thus muddle things more, causing more problems for my kids and their school experience. Nonetheless, there have been facebook posts alerting us that although the principals only got the hours given to them on Monday, that there is only 2 more days (Friday) to request more hours.

There is a chain of command for how and who you request stuff with the Surrey school district and I don’t want to screw it up. So I have trudged in….