autism – That ASD Mom

Am I ready for this?

Yesterday, I was at a meeting to fill out forms. When asked what my occupation is, my reply was “retired”, not “homemaker” or “housewife” as one might expect. I suppose it is a little odd to some that I retired at the age of 38 after working in healthcare for 15 years…

At the time of leaving my chosen profession, I had been asked if I was going to another office/field in the career path. My reply at the time was that I was going to do “something else” for a while and return to the profession in 10 years or when I was 50, which ever came first. At this time, I have no plans to return to my previous profession. So, I am retired.

As my life has taken a different, or unexpected path, I have had to educate myself about the provincial education system, provincial health care system, government resources, social media, and advocacy. I have now been retired for 12 years, a mom for 10.5 of those, and I’m exhausted.

When asked if I miss working, my reply is that I miss the money, and the people, but not the work. (Not the politics, not the stress, not the burn out.)

So as this school year is winding down in 2 months, we are preparing for the changes and decimation of the school structure. Staff policy changes mean that the schools want to change the support staff (ABA SW and EA) yet again, thus changing the amount of hours that my children have access to support in an effort to assist more children in need. As it is, the support staff is low. Recruitment at a district level seems to be non-existent and of course, the work is thankless, especially in pay (ask a teacher eh?).

My PAC has not been able to do much this year or really the past 2 years because of COVID restrictions. We had a hard time to get this executive together. I didn’t even want to be on it this year, and next year isn’t looking too promising either.

My son seems to have ODD (Oppositional Defiance Disorder) and hasn’t been doing much school work in class these days. He can’t tell me why. Just “I don’t want to talk about it”. And my daughter is officially done of school work and reporting. She is still behind because she also resists (Unless it is science, or art, or interesting). I have to make a plan for scheduling already for next year so that I can help her better.

… it is 7:45 a.m. Can I go back to bed yet? I’m not ready to contemplate the chaos that will ensue.

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.

The Struggles Continue

The struggles continue. We have started them on meds for ADHD and now I have to find some form that both will take for other meds; melatonin and iron. Iron is for the girl as she doesn’t eat meat (or fruit, or veggies) and the doc worries that she may be anemic. Not a good thing for anyone, but especially with her heart condition.

Melatonin is for both, but mostly for the boy who has anxiety issues and is back out of bed at least 3x a week. He will come down and say that he is scared and the reasons range from a video he saw, to worrying about death and dying (what will happen to him if I die, worrying about the aging grandparents…) and the new one is worrying about his sister as she doesn’t finish all of her food some days.

*Sigh. Let mommy worry about that, and you worry about getting enough sleep so that you aren’t grumpy or sleepy at school tomorrow … is usually my response.

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Our province is also going through a period of rain storms that have caused flooding in the main farming area of our province. Many have been forced from their homes and need to rebuild only to have more rains come. Stores are empty in areas due to stocking and access issues. Gas is rationed. Borders issues with the States. The list goes on.

In the midst of this, I have actually put up the Christmas decor, which is a significant feat for me as I usually don’t like it, don’t want anything to do with it, … I tolerate it and the commercialization of the season. I guess this year I needed something to look for , to hope with. Despite my child’s greed about presents, we have determined that our kids have too much stuff and there will not be an abundance of gifts this year from us or Santa. We figure there is enough from grandparents, etc to add to the piles.

Hubby has asked if he needs to buy something for me or if he “has already done this” *wink (meaning have I bought something and told him that was what he got me). I told him, you got me a new TV so there is that. I was getting annoyed with squinting to read the subtitles from the other end of the room, so we got a bigger screen and it is a smart TV, so it now has only 1 remote instead of 2, and more apps on the TV whereas we had the Firestick (amazon) in the basement where I hardly went. I have discovered shows that I watched in the 80s or have wanted to see but didn’t have the time or platform for it.

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There has also been protests at the BC legislature about changes to the funding for special needs. Currently most autism funding is through the BC gov’t from the Autism Funding Unit. There was an announcement about funding changes to create hubs instead of the current direct funding we currently have. AFU should be increased in amount has been a long said critique. Instead, BC has decided that in order to provide access to services for the various disabilities, diagnosed or otherwise, they will pool it all into hubs. This model has been used in Ontario and has been criticized for increasing wait times to gain access to services. My issue is that information is vague; no budget listed, no information about WHO will determine WHAT services are to be provided, or their credentials to make this determination. In trying to help the masses, I worry that they will hurt more than help. So to that end there have been protests and one will be on December 3, the International Day of Persons with Disabilities. I’m torn. I know that I should go. I also have been thinking that I should join the letter writing campaign (to my MLA) about this, but frankly I have little energy for all of this. I’m trying to put my finger on it, but it is reminding me of when I was working in healthcare and they talked about the demoralization of the staff. I think that is it, or the closest thing that I can think of to describe this feeling. The fact that I have to fight so hard for basic access to things that have been deemed essential or fact. It takes so much energy to advocate for things, and it is so far out of my comfort zone that I worry that I will make a horrible faux pas and thus screw my chances (and my twins’) for getting what services are needed.

March .. so far

And…. it’s March. What will this month bring?

I spent last month doing more WikiTree, struggling with online learning and a son who doesn’t want to do the “work”. I either have to sit there (essentially go to class.. that I thought I was done with) or he gets distracted by … something and work doesn’t get done. Much whining, much protest from either twin.

March 1st was the deadline to apply for school supports (EA/ABASW) in our district, and this morning, I spent time looking at the Needs Assessment for our IST (Integration Support Teacher) in an effort to maintain or increase the support hours given to my children. As I have pulled my daughter from the online learning at school, my question was about what I face should I not enroll her in public school next year. She is behind, curriculum-wise, and so it is better to catch her up now, than to try in high school.

I think that today was the first time that I left the house (other than school drop off) this week as I had to pick up my kid’s report card (form to sign). We aren’t bothering with parent/teacher interview. (As hubby puts it, what can she tell us that we don’t already know?)

These past few weeks, we have also been more focused on Animal Crossing. We bought a switch for our kids’ birthday; specifically so my son could have Mario Maker that he had been obsessed with. He created a lot of levels, so many that he had to create another persona called “Storige” as the other is full. His sister likes Animal Crossing but it is Hubby and me who play it most. I tend to play it in the mornings when my son is in the kitchen for school. I have to sit there and listen so this is something to do when I “help” him. Yesterday, we bought the family membership so that we can visit others. So far we have been to 2 islands. This morning, I went to someone’s island that I met in a Facebook group for this game.

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.

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?

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.

Quarantine 2020 – Entry #4

Today, I did 2 loads of the kids laundry and hung them on the line outside. I love #firethedryer when I hang clothes on the line. Sure there’s still cat hair… or my hair on it, but it is better than the dryer most days.

Yesterday I took the Yogibos that the kids have from their rooms and put them in the playroom. I had given the kids new stuffies (cheap Easter sale) M was sitting on the floor propped up by throw cushions. They enjoyed sitting there but in the end, I had to remove them today as there was a lot of jumping on them. Which I suppose is fine but I worry about the bags splitting open, or some kid getting hurt.

I went through my closet and hung up all my leggings, and then went through my drawers and folded everything. The problem with being home is that you go “oh it’s sale time, I should buy stuff” but then you look and say “but I have so much, I don’t really need new stuff”. I think it is the boredom talking. “Retail therapy” can be a let down, especially online. You order stuff, it comes, you go… “ooo… new stuff!” and then you look at it and go, “that’s it?” with disappointment. Last week, I ordered new clothes to replace some, and because some were SOOOO cheap, like 70% off. A deal I couldn’t pass up. This is the problem with shopping. When you have money, things aren’t on sale, or you don’t need anything right now. Then your kid has a growth spurt, or something breaks and well, you know the rest, not on sale, or you can’t find it ANYwhere.

Yesterday, I also went through my 2 deep freezers and made a list so that I knew what is in it, to plan meals, or buy more of what we don’t need. I had to buy milk. Went to Costco in the morning. Got to the parking lot. Got out of my car. turned around halfway as the snaked line was past snaked and down half the parking lot. So I went to Save On and Shoppers (where I found the stuffies on sale). Went to Costco in the evening as I needed to find summer PJs and school workbooks. Found what I needed, expect of course the PJs. Ugh. I wonder if I can order them online.

To go in the store, I wonder if I, of all people, should wear a mask. I wear gloves. I had forgotten that I had them. I had bought a box, when we first got cats, for the purpose of cleaning the kitty litter bins, and never used them. I also bring a wipe to clean off the cart. I say, should I? as my twins are immunocompromised.

Today was the first day where there was an “issue” related to the social distancing problem. L and her dad had been out front as she was on her scooter when a neighbor girl who looks to be about 6 came to play with our daughter. I felt bad. I want my daughter to make new friends, but this is not the time eh? In the end, her mother came after 20 minutes. My husband had gone to the house but it was her grandmother, who spoke no english, looking after her. Luckily, her brother knew where she was. He rang the bell a few hours later looking for her again, which makes me wonder. I said to hubby afterwords, I remember that when we were young that we would wander the neighborhood, but times are different. Shouldn’t someone be supervising her?

I wiped off anything that she might have touched which she was in our yard with bleach. Of course, I took the opportunity to clean things nearby. Ugh. So dirty! I know that I have some spring cleaning projects but it seems like I have more to add to the list.

A cat is meowing at me, so I suppose I should see what he wants. (likely to go out AGAIN!)