The First Rule of the Convoy

In just a few weeks, an absolutely horrifying 12 months will end. Our very own annus horribilis. It didn’t seem it would be a year of pain, but it started with a kid in hospital and will end with the end of a forever relationship that looked like it would last, well, forever.

On November 9th last year, my son had to be taken to emerg. It was the 2nd time in 2021 that he was in an ER. There were a lot of guesses about what led him to being there. It wasn’t until earlier this year, after begging doctors to do a routine test, an ultrasound, that it was revealed what was bothering Daniel–his gallbladder had to come out.

Being non-verbal, having limited mastery of his AAC, and losing what speech he had, meant we had no way to understand what he was trying to tell us. His pain response isn’t to say “ouch.” It is a complicated set of behaviours that aren’t connected even to where he is feeling pain, as we now understand it.

When he came out of the hospital, we could see the boy we knew before pain ruled him. Being a teenager, he didn’t like the idea of taking it easy and was rough on this stitches. He had an up and down summer, while we tried to figure out how to make sure this 6’4″ kid ate on a schedule that didn’t create more pain and also didn’t make him go hungry.

The gallbladder surgery is just one physical health issue that Daniel faced. The hospital and ambulance were traumatizing for him and the challenge is to get him in for more tests to see what else is up.

Even something as simple as going to the dentist takes almost military-level planning to keep him comfortable.

In all of that time from last November until today, I have spent 7 days away from Daniel and that was when he was in the hospital in April. Oddly, fighting with doctors at the hospital and then coming home to fight with them some more on the phone is not the relaxing vacation one might expect.

For a while, it was possible to go out for walks or do some errands with Deanne watching all of our kids. As Daniel became more disregulated between November and April, it became clear that Daniel and I were going to be inseparable. There was no respite available and no money for respite. When Daniel slept, that. increasingly, became my respite. If Daniel didn’t have a good night, neither did I. The other part of the story is that Daniel had not been in school fulltime since last October. He was able to return this September, but only on short days so far to reintegrate him

It felt like I was doing this alone for months and I now know I was. For months it has been that I could not leave the house without Daniel. As separation takes hold, nothing, effectively will change unless respite can be secured and he is in school fulltime.

I have an internal wishlist of what would make me better able to recharge my batteries. First on the list is respite, second is getting a two hour nap in the day. That’s where I am at.

The last year has shaken my belief that I am doing the best for my kids while doing everything I can to find support for Daniel. That feeling takes a toll on a relationship when previously Daniel has only been here for a few days at a time–a week at a time at most–over 4 1/2 years.

None of this is Daniel’s fault. It’s a lot about what supports are available for kids with complex needs. Add in a pandemic, and there are even fewer supports. Then stir in two partners moving in very different directions and trying to deal with their own feelings of shifts in attention and energy in the house.

The path ahead is still very cloudy–who will live where, when do moves happen, is there a financial path to staying in our current house, when will the 2 days of respite (yes, 2 days per quarter) materialize, can we arrange another set of medical tests for Daniel while the healthcare systems seems so wobbly.

Early next year, the journal for members of CPSO will have an article that includes the medical response to Daniel’s healthcare journey. There is one anecdote from the last year that I hope makes it into the final copy.

After 2 days in the hospital last April, I received the morning phone call from the nurse to discuss Daniel’s night. She said they were ready to discharge Daniel and I asked if they had done the ultrasound and taken more blood yet. The answer was no, as I knew it would be. I told them that I was not picking Daniel up until they had done the tests to see if we could figure out what was going on, to answer why he was in the hospital for the 3rd time in just over a year.

The nurse then said they could do nothing more for him and I didn’t pick him up they would call CAS and tell them I had abandoned my son. I invited them to do that.

About 15 minutes after hanging up from that call, a doctor made the decision to start treating Daniel with pain meds and things started turning around.

That call, along with a few others, in the last year with Daniel, changed me, but it did not change my resolve to stand with Daniel and find out how to get him more help.

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The First Person I Knew with PTSD

IMG_4984

Trees laying roots intertwined with each other and growing into a stock block wall.

10 years is a milestone in our memories.

We celebrate the birthdays ending in a zero or the decades changing differently. Well, unless it’s the birthday when one can vote or retire. Or drink legally.

The end of a decade and the beginning of a new one is a big time to take stock.

Which brings me to thinking about my mother who passed away 10 years ago today. It wasn’t a surprise when she died. In fact the family had been told quite a few times in the years before her death that we needed to prepare ourselves to say our good-byes.

About a week after her death I wrote a note about some of the ways that her courage and her life affected me.

10 years later, I realized something I didn’t in 2009. My mother was likely the first person I knew who lived with post traumatic stress disorder. I didn’t realize it at the time, because my PTSD diagnosis was still a while in the future.

I say “likely” because there was no diagnosis and I am not a professional. It looks so similar to me and it feels like a link between us.

Over the years I have talked to many folks about the fog that I felt when my mother was gone. It usually comes up when I see a friend who has lost a parent.

What I don’t usually say is how unsafe I felt after my mother died. Or how I relived previous trauma or how the next several months of my life would feel unbearably threatening as chaos seemed to spring up every where.

Despite knowing some bits of my mother’s life, I had never realized how unsafe her life must have felt for so long. Even if PTSD had been a diagnosis for much of her life, she would have been treated by a doctor or received any kind of therapy.

Simply because she was a woman, compounded by when she lived. A doc might have talked to her at length about self-medicating if she went to a doctor. Maybe.

I think about what a diagnosis and treatment could have meant to her.

And then I think about the terrible toll that her fight-or-flight instincts took on her, arising from what I assumed as a kid were easy, day-to-day things.

Along my road to a diagnosis, there were enough challenges. Docs were quick to prescribe drugs rather than therapy. There was one shrink who told me I just needed to tell my father I loved him more often. My GP tried to diagnose me without referring me to a specialist and got the diagnosis horribly wrong. And then breached my confidentiality. When finally a therapist noted that acronym it was anticlimactic for my doc. He might even have been a little annoyed.

When I heard PTSD I imagined that was only for soldiers or police or firefighters. I knew practically nothing about how many people were affected and I had no idea how important the role of losing a parent was in leading many folks to feel traumatized again.

Last week I was chatting with a colleague about PTSD and I disclosed that we shared a diagnosis. I’ve told quite a few people over the years about living with depression (another milestone: 20 years of an actual, honest-to-goodness depression diagnosis–okay, 20 years and 2 months) but there are only maybe 3 people I have discussed PTSD with.

Something clicked as I was approaching 10 years of living without any parents that made it possible to say this is a part of who I am.

I kinda feel that I am reconciling with something I had no way of knowing–my mother likely lived with PTSD and it informs so much of my life from work to parenting.

For most of my life, she was the most courageous person I knew. Believing that we share a diagnosis makes me realize I wasn’t even close to recognizing how much she went through. How much the easy choices in life become impossible to make. Or how connected we really were.

The greater the distance from my mother’s death, the closer I get to understanding her, I believe. The reality is that time ran out long ago to have some discussions it has taken me a decade to know I needed to have to understand both of us a little better.

A better world through fundraising

CN: ableism, abliest language

I don’t write much about fundraising.

Ok, I don’t write much about anything these days, but if I were writing, fundraising wouldn’t be the topic I would choose to write about often, if at all, despite being in the profession since Clinton’s second term.

I do, however, think about charities a lot. And not just the ones I work for.

When my son was diagnosed as being autistic, I started to encounter charities that made my skin crawl at the messages they peddled. It was only seeking out actually autistic adults that made me realize the depth of misery some of these charities were creating. Words like abuse and eugenics popped up a lot.

And then a year ago, I saw an ad from Sick Kids Hospital in Toronto that screamed ableism and opportunism.

I dreaded watching the VS ad other fundraisers were raving about because I heard that autism was referenced in it. When I finally did watch it, there was nothing positive about autistic people. In fact, it struck me that the mention of it was just thrown in to attract attention.

I vented about the ad on social media and at AFP* Toronto’s annual Congress. I started a couple of blog posts, but I just couldn’t get to the point of publishing them.

*AFP is the Association of Fundraising Professionals and is the professional organization I belong to.

A year has passed and the VS campaign messaging has become even more appalling to me.

I had only negative things to say whenever the Sick Kids campaign popped up and that wasn’t what I wanted to share, but it was often on my mind. Unspoken, trying to get out.

But then 3 things happened in quick succession.

First, I saw some fundraisers promoting an event presented by their company which had the word “savant” in it. For some autistic people and their allies, savant is a slur. It speaks to a greater value that the mere existence of an autistic person doesn’t have. If one is a savant, then one overcomes being autistic, or having no value.

Second, Sick Kids started running Twitter polls asking folks what team they are on. It took the whole competitive angle to a new and disgusting level. What happens if Team Autism gets more votes? Will they get to stay on the island?

Third, my professional organization, AFP Toronto provided me with something that looked like an opportunity to do something positive. They put out a call for proposals for Tough Topics–the things that eat away at fundraisers that never come out in presentations on direct mail, wills, click-through-rates, or being a better leader.

I asked a few people about some ideas I had and took the plunge and submitted a couple of proposals. Aside from a presentation idea about how to treat consultants well (tentatively entitled “The Care and Feeding of Consultants”), there was never much of a fire burning inside me to get in front of a bunch of fundraisers.

The opportunity to address ableism in fundraising sparked more than a bit of a fire.

I met a fundraising student, Liz Chornenki, at Humber at the most recent AFP gathering and heard what she had to say about getting around an event that is supposed to be inclusive. I wanted to co-present with her on one session, because she experiences ableism–especially in the profession–every day. Now, we are listed as presenting a session on ableism. Here’s the proposal for that one:

Unaccommodated: Fundraising and Ableism

Session Description:

Ableism isn’t just about trying to decide between saying differently abled or disabled people, it’s about not incorporating inclusion. While many charities deal with issues relating to ableism, fundraising hasn’t kept up. This session will look at the language we often use, the ways we exclude people from events and giving, and examples of appeals that reinforce stigma and ableism. We’ll also look at the under-representation of disabled people in the fundraising profession. Are we doing everything we can to accommodate people who use mobility devices and communication devices? (For this session, we would like to request a different seating arrangement from the usual one. One with fewer tables with room for people with mobility devices to move freely to any table in the room would be ideal. Also, a format type of other would be useful.)

The other session I proposed is related directly to that Sick Kids ad and agencies of the sort that touch on my son’s life.

Fundraising That Hurts

Session Description:

Fundraising is about changing the world. What happens when it hurts people? This session will explore the stigma reinforced by campaigns from a hospital foundation and a disability-related charity and the community voices raised in opposition to them. During the session, participants will look at the language of framing winning battles against a disease and the role of inspiration porn. It will also look at the movement to make charities operating sheltered workshops increase the sub-minimum wages paid to disabled people.

If either presentation is approved, I’ll be suggesting folks go looking for #actuallyautistic tweets and blogs, as well as post from disabled writers.