COVID – That ASD Mom

My mother worked hard to make me function with my hearing loss but not stand out visibly in society as having a disability. A lot of people either don’t realize (until I start to talk) or forget that I have hearing loss. People with hearing loss speak as we hear. I was told that due to my hearing loss, I apparently center my speech further back in my mouth so that the sound vibrations are closer to my ears… (or some sort of odd explanation like that) hence my voice pitch is lower than most. (This makes sense as I don’t hear high pitches well.)

I have met people who later tell me that they knew I “had something” but they weren’t sure if I was deaf or hearing impaired. (until I told them, which I do at times when I need to tell them that I lip read, meaning “stop mumbling!!”) over the years, I have had some interesting conversations that range from thought provoking to down right rude. (One conversation began with “Do you know sign language?” to which I replied after a stunned pause with “No, I don’t know any deaf people” to which he replied with “Oh so you just wear a hearing aid.”)

COVID has shown me how well I do/not function, as I have had to be in on Zoom calls, supervise my children in their online school sessions, go to the store, medical appointments, etc where I have to wear the mask and be with others who use the masks as well. We did a year of online school with my children where I bounced between screens/rooms to help my children with their “listening” and assignments. I learned that I didn’t always get everything that was said because it was muffled, we were in a class with a bunch of 8-10 year olds, or frankly I was bored. If my kids hadn’t had their EAs, I would have missed a lot of things necessary to make sure that my twins got the work done.

During the year, I had school/child related meetings to attend and so I learned a lot about TEAMS, and Zoom. I liked Zoom meetings in that I didn’t have to leave my house and drive anywhere, find parking, sit in a large room with questionable acoustics to hear information that may or may not be new/relevant to what I want to know. Some Zoom meetings that I attended such as the ones with BCED Access had an interpreter and manually entered closed captions, that a panel member volunteered to do. Other meetings were my local PAC or District PAC (Parent Advisory Committee) and I somehow ended up on a newly launched Inclusion of Diverse Learners Committee. I look forward to seeing how this evolves and whether it helps/impacts the targeted cohort.

In going out in public with mask wearing, customer service has been interesting. There are many times when I had to explain that I read lips, and the other person was able to accommodate by stepping back and removing their mask so that I could read their lips, which was helpful. Other times, I’m sure that I had inappropriate replies/responses to whatever was said (which I likely do/did regardless of this mask-wearing times that we have/are experiencing). I had various people on Facebook point out variations of this mask for me. Obviously forgetting the fact that I would need to hand them out to others to wear, not that I would the one wearing it. (FYI, there are some scary looking pics on the internet of the various versions of these.) What I should have worn was one of these pictured below, which is a moot point now I suppose.

I got fully vaccinated last month but lament that my children are too young to get it. Even if they were of age, I’m sure it would be a battle for us with at least one of them (which one I’m not sure at the moment) as I have read of other facebook posts by other parents who asked where they could go with their ASD child.

As my children have a heart condition, I consider them to have a compromised immunity hence hubby and I still wear masks when we do errands, even though we see others who do not.

I’m still stunned when I see posts on social media that people are camping (near the BC forest fires), or travelling to the other end of the country to visit family. I get that everyone makes their choices, but I can’t imagine travelling ANYwhere as we are STILL in a pandemic. While people are/getting vaccinated, we are still hearing reports about case numbers going up. This past week, the BC government advised/ordered “Regional restrictions for gatherings, exercise and restaurants are in place for people who live in Kelowna, West Kelowna, Peachland, Lake Country and on Westbank First Nations lands (Central Okanagan Local Health Area)” as per the gov.bc.ca website 4 days ago due to yet another outbreak. While I would love to travel, there is no where that I need to go urgently. Yes I would like to see my 80 something mother and my family back East, but we will not be risking it to go on a plane anytime soon. I have told hubby that we shouldn’t plan any travel until 2022, which is fine for our budget as we usually alternate between travel or home renos. This Spring, I had landscaping done to improve our gardens. (and then the heat dome thing happened and scorched my new plants. *sigh) I still dream of going back to Vegas to see shows or someday (in the far far future) going on another cruise.

In regards to my disability status and travel, it is the rare time that I use this option. I have flown a lot of place in my life, in fact, I was hours old and traveled on a helicopter to another province for medical care. It wasn’t until my early 20’s that I started using my hearing loss to benefit me. I board the plane early (when they say people in 1st class or who need extra time to board) so that I can put my stuff away. 🙂 I have never been questioned about my being in the early line. Hubby has benefited from this as well. I usually pick the left side of the plane so that my right ear, the good ear, is closest to the flight crew when they ask if I want a drink. I have learned not to indicate this on my ticket though or I can’t sit in the exit row with my VERY tall husband who needs the leg room. Over the years, we sit wherever we can on the plane. As he needs the leg room, I have booked him us in separate rows to accommodate his leg room need. To be fair, we are both tall, but he is 6’7 and I am only 5’9. The background noise on the plane has been something that I had gotten used to. I rarely know what the pilot is saying, but I suppose most people don’t.

I have also learned that to use this hearing loss thing to get me better seats when we have attended FanCons. On our 10th anniversary, we went to Vegas to the 50th convention of Star Trek. It was great, but we were in the middle of a HUGE auditorium. It is was our first time at any convention and I spent a lot of time looking at screens rather than the actual person. We have since been to Supernatural Con once, and FanExpoVancouver 2x. I saw that there was an ASL group there and inquired. Hubby was allowed to jump the assigned ticket entrance because he was my “companion”. So I got to sit in the first 2 rows marked as “reserved for deaf”. I got to meet the lovely group of 4 or 5 that attended and the ASL interpreters to ask about their work. Sitting up front helped my enjoyment of the experience greatly as these where in MASSIVE ballrooms where the acoustics are even more fun (not).

Oh yes, and can’t forget the time that I was the co-chair for the national conference of my professional association. I got to wear a blue tooth type device (t-loop) for the conference. Had I known that it was an option to ask for in previous years, I would have heard/understood SOOO much more. Alas, that was my last year in my profession before I retired/burnt out so I don’t have any more conferences to attend in that vein.

As mentioned in my last post, I entered the digital age in my 20’s, but my latest aid came with yet another gizmo that I LOVE. It is called a ComPilot. It is hooked to my TV and I wear it to watch my shows. It is a T Loop; you wear it like a necklace and the sound comes through your aid. I no longer have to blast the volume, which is something that hubby does these days it seems, AND I have learned that I can mute the TV but hear the show regardless. My family has to wait for me to mute it or I can’t hear them speak to me.

Well I have to go to another medical appointment soon. This time it is just me.

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.

Tag: COVID

COVID and my disability – part 2

February Update