[00:00:00]

Alison Steeves

[mic not on]

[00:00:39]

Ellen Smith

… a homemaker, presently.

Alison Steeves

Could you tell us a little bit about your family?

Ellen Smith

Yes, my husband and I have lived here for 22 years this summer. We have two adult children living with us currently. One is our 28-year-old son who has minor special needs and our daughter who has Downs Syndrome, and she will be 25 this summer.

Alison Steeves

Back in late 2019, early 2020, can you tell us about your day-to-day life for you and your family, sort of what was your daily routine?

Ellen Smith

Certainly. My husband was going to work in office in the town of Summerside, and he would drop our daughter off daily at a day program for handicapped adults, which she attended from roughly 8:30 to 3 o’clock every day. I was basically the glue to hold this all together. I believe our son had just moved back in with us and was trying to get into the armed forces to train as a financial officer.

Alison Steeves

How long had your daughter been in this day program?

Ellen Smith

In the day program, since she graduated from high school at age, almost 18. So it would have been several years earlier, three years roughly.

Alison Steeves

So she knew the routine pretty well and the people that work there.

Ellen Smith

Absolutely. It was a very small program, and so there were only small numbers of people in the program. She became princess to them very quickly. She was a very young client compared with most of the attendees.

Alison Steeves

And you said your daughter has Down Syndrome, correct?

Ellen Smith

Yes, she does, as well as some other comorbid diagnoses. She has sensory integration dysfunction, and although she’s never been assessed, we think she’s inherited some of my husband’s diagnoses. We see her ticcing and she doesn’t have great attention skills. So we think she has ADHD as well.

Alison Steeves

Would you say that routine is pretty important for her?

Ellen Smith

Absolutely. Any medical professional would attest, and any parent of a special needs child or an adult would attest to the fact that they need predictability because they don’t cope with change. They don’t learn as quickly new routines. So any threat to that routine over a longer period of time can really compromise their stress levels.

Alison Steeves

So in 2020, when PEI began implementing COVID-19 measures, did that impact your daughter’s routine?

Ellen Smith

Oh, absolutely. She wasn’t allowed to go to her day program for quite a while. I began to see her having signs of mild depression. She would occasionally have crying jags or be overly sensitive to normal comments being made in our day-to-day lifestyle. She just seemed to be more mopey, that’s a good English word to use. Yeah. And of course, that affected us as her parents. Generally, when you have a special needs child, you’re already stressed to the max. There’s a lot of detail involved in that which I won’t bore you with.

Shortly after we moved here, for example, the IWK (Izaak Walton Killam Hospital for Children)—that’d be 22 years ago—sent us a letter saying that anybody who had a child who’d had open heart or brain surgery would be traumatized and would become hypervigilant about their health, their mental state, their emotions more than the average parent. So not only were we dealing with the grief associated and the stress associated with having a special-needs, delayed child, but the medical condition that she had been through or the surgery had compromised our state of mind, as well. So if anything happens to her that affects her emotional state or her physical health, both of us are deeply affected by that. That’s just been since the get-go.

Alison Steeves

So to be clear, your daughter had had heart surgery, very young?

Ellen Smith

Yes, at 10 weeks of age, yeah.

Alison Steeves

And your observation was that this sort of information pamphlet was correct for you and your husband? The impact was that—

Ellen Smith

Oh, absolutely, absolutely. It gave us a reason to pat ourselves on the back because we knew then we weren’t crazy.

Alison Steeves

So every time any sort of slight change or health issue made you hypervigilant, it was kind of an increased impact?

[00:05:00]

Ellen Smith

Oh yeah, the slightest little thing. And certainly, I as her mother because I had been taking care of her, more hands-on than of course my husband was because he was the breadwinner, and still is. So it definitely affected me. And I know it affected my husband.

Alison Steeves

And how long did these impacts, these changes in your daughter’s mood, last?

Ellen Smith

There’s still some residual effects. To this day, a couple years after she was able to go back to her program, if we have a snow day or if there’s any kind of cancellation that’s out of the normal routine, she seems a little concerned, a little anxious. And I often have to reassure her that it’s just because of the snow and they just cancel schools because it’s not dangerous to drive, et cetera, et cetera. And then she seems reassured.

But I don’t remember her ever questioning that. In fact, previous to this time, she would go, “whoo-hoo, day off!” You know, like a typical teenage kid would.

Alison Steeves

So since the pandemic you’ve noticed that if there’s a change in routine or if there’s a cancellation in her day program, it’s more stressful for her?

Ellen Smith

Yeah, if it’s out of the normal routine like, you know, Christmas holidays. Gosh, I’m trying to think what else they get off regularly. I guess that’s about it really. And she’s so excited about Christmas that that was never a big issue for us so, or for her. But definitely now, I see a difference in her behaviour. Yeah, if there’s snow.

And it’s funny, I just noticed that this winter. I don’t know if I was even cognizant of it last year. We were too concerned about other issues of course. But it’s definitely affected her. I’d say her state of mind hasn’t completely recovered.

Alison Steeves

And you mentioned your husband’s diagnosis. Can you speak about that?

Ellen Smith

Yeah, absolutely. He was diagnosed several years ago at a private clinic in the U.S. with ADHD. I’m just looking at my notes: a learning disability, OCD, a post-concussion syndrome, a tic disorder, and a mood disorder. He does deal with some chronic anxiety on top of all that. And he was given some trials with pharmaceuticals since that diagnosis. But what we discovered was, for example, for one of the diagnoses, if he was given a drug, it would exacerbate the symptoms of one of the other diagnoses. So we learned over several months—well actually a couple of years—that that wasn’t going to work. So we’ve developed kind of a naturopathic approach to it of supplements, vitamins, exercise, fresh air. And it seems to kind of keep everything at bay.

At the beginning of the lockdowns, when he had to work out of the home, and Michaela was home, that’s our daughter, he started having sleep problems. And that’s a first for him. He’s not a young man; he’s 66 now. He would have been in his early 60s during the lockdowns, of course. And he got a sleep medication. But after trying it for several months, it started making some of his symptoms worse, as well. So we slowly had to kind of ease him off of that.

And to this day, he’s still having—not as bad sleep problems, but he still has trouble getting to sleep and staying asleep at night. And that was never really an issue with him up to that point, he usually just as soon as he hit the pillow. And I would know, obviously, because I could see that. So yeah, this is all brand new for us.

Alison Steeves

What aspect of the COVID measures, do you think, impacted his sleep? Or what was the connection?

Ellen Smith

Well, just the stress, just the stress. I mean, the lockdowns were frustrating having to wear masks everywhere.

He had had some nursing training. He did quite well in the academic end of it. He’s a very bright man. And we both were privy to the fact that, for example, with the vaccines— I’m sorry, I’m getting confused here.

If a person had had vaccines, according to standard immunology that was known at the time and now, if they work, then if you’re exposed to anything that you’re immunized for, you should manifest little or no symptomology.

So if you’re carrying that virus or disease, certainly that would be more of a danger. So it made sense to us that a vaccinated person would be more of a danger to other people if they were carrying. And we had— Sorry, go ahead.

Alison Steeves

No, sorry. Had your husband’s routine changed as well, then. He was impacted?

Ellen Smith

Yes, he had to work at home. He still is, as a matter of fact. He’s a federal government employee. So he wasn’t getting out and being exposed to, you know, getting back and forth to work or running errands on the way home. Things like that that had been part of his life.

And just the stress of not knowing what the heck is going on, you know, in our world.

[00:10:00]

I mean, we all were following everything. And I just saw his behaviour go from sort of in control to worse. And it’s kind of been worse since then. Like he’s more difficult to deal with since that time. It’s not as bad as during the lockdowns, certainly. But he’s still— His symptoms just seem to be worse at times than I remember in previous years. And that’s hard on the family. It’s hard on the children. It’s hard on me, certainly, you know.

I have to make up any deficits, and I can’t work outside the home. I haven’t been able to for quite a few years because of his disabilities as well as our daughter’s. But, yeah, we’re all feeling it, definitely, you know. My own mental health has been compromised. I see my sleep disruption happening more regularly than it used to up to that point, as well.

Alison Steeves

And you spoke a bit about the vaccines. You’re referring to the COVID-19 vaccines?

Ellen Smith

Yeah, absolutely. At first, we thought we weren’t going to take them, knowing what we knew and a little bit of research we’d been doing. But then his job required him to take it in order to keep being employed by this particular department. Our daughter had to be vaccinated in order to return to the day program, eventually.

The first year wasn’t such a big issue because there was no vaccine available, and we had to just deal with it. But once it was available, they were insisting, absolutely, that she had to have this.

So I decided I’d better too because our in-laws, my husband’s family members, his sisters insisted that we wouldn’t be allowed to visit his mother in Nova Scotia unless we were all vaccinated. So we just said, “Oh the heck with it, we’ll do it.” And we did.

Alison Steeves

And when did you take the COVID vaccine?

Ellen Smith

I was probably the last person in our family to take it because I wasn’t being forced to keep a job or anything. My last one—and I only took the first two, I haven’t taken any subsequent boosters—I believe it was either late November or early December of 2021. And I had the usual side effects from the first one, with a little bit of fatigue and sore arm, stiff arm for a few days.

The second one, as soon as the pharmacist gave me the shot during that process, it was like liquid fire going into my arm. And I said, “Ow,” quite loudly. I said, “That really hurt.” I said, “Did you break the tip of the needle or something?” And the guy who gave it to me, the pharmacist, he didn’t seem to be concerned in the least. He just put the Band-Aid on it, you know, alcohol swab and the Band-Aid. And just said, “Wait 15 minutes in the store so we make sure you don’t have any kind of bad side effect immediately.” And I didn’t and went home.

And I had the usual symptoms I had with the first one: the fatigue and the sore arm for a few days. But since that time, regularly, I’ve had either a sharp, fiery pain right on the spot where the vaccine went in, or like, an achy feeling. And that happens several days a week, some weeks worse than others.

Alison Steeves

So that was approximately over a year ago now?

Ellen Smith

Sorry?

Alison Steeves

That would be over a year ago now, from the time that you took the second vaccine.

Ellen Smith

Yeah. Well, I had it, what? November, December, so a year and a third, roughly. Yeah.

Alison Steeves

And how soon after you took the vaccine did you start having those symptoms?

Ellen Smith

Oh, right away, within the first two or three weeks. I just figured it was taking longer to get rid of the initial side effects from, you know, which we were told to expect. But it just never went away with me completely.

Alison Steeves

So it’s still bothers you today?

Ellen Smith

Yeah, oh yeah. Like today, it’s just like, I’ve had a really good sleep last night. But it’s still like— It doesn’t hurt to touch; I can actually bump into something. But it’s almost like there’s a piece of something in there and it hurts. The needle pin, which it doesn’t have, of course, because it would get infected. But other days, it’s like, achy. So I can feel it from the inside. But to the touch it doesn’t hurt, which is really bizarre.

Alison Steeves

And did the pharmacist speak with you about that this could happen or any potential side effects?

Ellen Smith

Not at the time, no. Well, we had to sign paperwork that asked us if we had an allergy to one of the components of the vaccine that was kind of unusual or rare or whatever. And of course, I wasn’t aware, so I said, “no.” But, other than that, no. I had just read online what to expect. So when it happened, I wasn’t alarmed. But the fact that it’s continued with me, you know, not to the same degree as the first few days. But it’s just there all the time, and I find that so strange.

Alison Steeves

Would you say that your concerns about sort of these post-vaccine symptoms and lockdowns have impacted any of the relationships in your life? You mentioned family members who were insistent that you get the vaccine.

Ellen Smith

Right. Well, I’ve never really shared that with any of my in-laws because they’d probably accuse me of being crazy.

[00:15:00]

Or having a big imagination. My immediate family know about it. I haven’t gone to a doctor because I figured, what are they going to do? They’re going to remove the spot or do a biopsy? I mean, my experience is a lot of doctors are just trying to keep their job, so they’re doing what’s demanded of them, I think, unofficially.

When my husband asked for— For example, my husband could never take the regular flu shot every year because he’s allergic to egg whites, the albumin, the protein, the egg white. And up to that point anyway, a lot of the vaccines for flu, regular flu, I believe involved the use of the egg white. At least the old ones did. So he was never able to take that. It could be a life-threatening thing; his throat would close over.

And he didn’t know that the new vaccine wouldn’t be created that way. So when he went in to ask his doctor for a medical exception, his doctor—who was from Iran or Iraq—gave him a story, about, “Well, in my country, a couple of hundred years ago, there was a gentleman in charge, their leader, who wanted to have marital relations with every single woman in the land. And so, everybody just went along with it or their head would be chopped off.” And I said, “Oh, well, that’s an interesting analogy.”

Alison Steeves

That was his response when your husband asked about getting an exemption?

Ellen Smith

Oh, he absolutely refused. He said, “No, I can’t do it.”

Alison Steeves

Ellen, what’s been the hardest part of all of this for you?

Ellen Smith

Not knowing if it’s going to continue again. Or if this is going to happen to a more severe degree. You know, if governments are going to work against their populations, I guess, in such a blatant way. I mean, you’d have to be a fool not to recognize that this stuff happens behind the scenes all the time and has been going on since the dawn of man. But the fact that it’s come out of the closet so blatantly. And they’re no longer even trying to hide what they’re doing. Scares the you-know-what out of all of us in our family, I guess.

I don’t trust the people in charge as much as I used to. I was never a naive person who believed everything that came down the pipeline. But I figured the truth is somewhere in the middle. But boy, I’ve gotten a lot more skeptical since all of this took place in the last two or three years.

Alison Steeves

Thank you, Ellen. And I’ll turn it over to the commissioners if you have any questions.

Thanks very much for sharing your story today.

Ellen Smith

Absolutely, my pleasure.

[00:17:55]

Final Review and Approval:  Jodi Bruhn, August 3, 2023.   

The evidence offered in this transcript is a true and faithful record of witness testimony given during the National Citizens Inquiry (NCI) hearings. The transcript was prepared by members of a team of volunteers using an “intelligent verbatim” transcription method.

For further information on the transcription process, method, and team, see the NCI website: https://nationalcitizensinquiry.ca/about-these-transcripts/

Summary

Married homemaker with two adult children. Husband has a number of comorbid diagnoses, disorders, and deals with some chronic anxiety. Her 28-year-old son has minor special needs. Her 24-year-old daughter has Downs Syndrome, as well as some other comorbid diagnoses.

Daughter attended daily program for handicapped adults. Due to the COVID-19 measures, her daughter wasn’t allowed to go to her day program so she began having signs of mild depression and now she no longer copes with changes as well as she used to. Ellen ‘s husband developed sleep problems, that continue to date.

Their family is vaccinated. After the second vaccine, she experienced flu symptoms, but since that time she regularly has a sharp, fiery pain right on the spot where the vaccine went in, feeling it several days a week with some weeks worse than others, still to this day.