Interacting with Autistic Children – A Guide for Charity Appearances

If you follow me on social media, you may know that I recently joined The Royal Sisterhood, a member of Costumers for a Cause.

CFAC is a local nonprofit which brings costumers together to volunteer their talents for local charities, to aid and enrich their fundraisers and other events. Dressed as princesses, superheroes, and more, we do appearances at events such as charity walks, Children’s hospital TV programming, and more.

Prior to joining The Royal Sisterhood, I was involved with another division of Costumers for a Cause, doing appearances as Superheroes/ villains, along with my husband. (I went as Beast, he would usually go as Magneto or Loki, all from the Marvel Cinematic Universe.)

At a TRS meeting yesterday, my friend Sara did a great presentation on gender inclusiveness while doing charity appearances. With an Autism Walk coming up, I asked if the group had ever discussed interacting with Autistic children. I have seen some pretty bizarre things with regards to Neurotypicals interacting with Autistics, after all.

After sharing a few thoughts on the matter, I was asked to write up a bit of a guide. I went home, brainstormed with my husband, and here we are! While this was written specifically for a group of Princesses, we thought that it was good advice for those doing charity appearances in general, so decided to post it here.

All dressed up as “The Fairy Godmother”,
prior to a charity appearance.

Interacting with an Autistic Child

1. Don’t force eye contact.

Eye contact can feel very threatening/intimidating to some, and far too intimate to others. If it’s obvious they don’t want to make eye contact, talk to their shoulder or their chin. Just because they’re not looking at you, doesn’t mean they’re not looking at you… if that makes sense. Don’t take it personally if they don’t want to look you in the face.

2. Do not touch – even a fist bump or high five – without asking first.

Don’t take it personally if they don’t want to touch you, or shy away from you physically.

3. Talk to the autistic child first, not their parent.

For example, ask the child if they want a hug, not the adult if it’s OK. If it turns out that the child needs the adult to communicate for them, the adult will step in. Asking the adult first is a sore point in the community.

4. Be mindful of sensory issues.

Avoid or go very light on perfume, etc when attending an Autistic event. Be mindful of the fact that loud voices (loud to us, not to you!) can be very startling.

Of particular note for princess events: The high, very girly princess voice and accompanying laugh can be difficult/painful, especially in groups. If you are in a group of two or more princesses, try to keep laughter subdued.

5. Know your audience.

Autistics are very, VERY literal. There’s a fine line between staying in character, and offending the children. Many of us have no ability to suspend disbelief, and some of the things said to enhance “character” can come off as lying, or as mocking the Autistic child.

For example, if you say “I just came from Arendelle…”, an Autistic child is likely to process it something like: “Arendelle doesn’t exist. Is she making fun of me? Does she think I’m stupid? What am I supposed to say to that?”.

It can be very awkward and uncomfortable. If at all possible, avoid making definitive statements about the fictional world you’re portraying (I know, this is super counter-intuitive, for showing up in character). For this reason, various figures of speech can also be confusing and make things awkward.

6. Speak very clearly. Enunciate!

Many Autistics also have sensory processing disorders, which can be exacerbated by busy environments like the charity walk. When you hear EVERYTHING going on around you, it can be very hard to pick out a certain person talking, even if right in front of you.

Please don’t be offended if you’re asked to repeat something, or if you are misunderstood. Also know that many rely on reading lips, even if they don’t have a hearing problem. Try to face in their general direction when talking to them, even if eye contact is an issue.

7. Give plenty of time for a response.

Autistic children can take longer to reply than neurotypical children. If you’re sure they heard you, just have a bit of patience in waiting for a reply. They’re processing! Also, know that long pauses may feel really awkward to you, but aren’t necessarily to Autistics. Autistics can enjoy your quiet presence, and don’t necessarily need nonstop conversation. Social cues are not our strong point!

8. Ask about hobbies, BUT…

… be prepared to have your ear talked off. If you get an Autistic child talking about an area of special interest, they can go on and on. It can be hard for them to tell when the other party is not interested, or the conversation should move on. Be ready to be very, very patient!

On that point, know that when the conversation has ended, be clear that you are ending it. Don’t hint around that you have to move on, just be clear and honest that you need to meet others, etc. Again, social cues!

9. Do not take anything personally.

I’ve touched on this with a couple of other points, but it should be expanded on. For one thing, Autistics can be very frank with you. There’s not usually a lot of sugar coating, more just saying what’s on the mind. It can come off rude, but is usually not ever INTENDED to be rude. These can fall into observations or questions about physical appearance, etc. Try to roll with things, even if something hurts a bit.

10. Watch your wording.

Please avoid the use of “high functioning” or “low functioning” to describe an Autistic person. Don’t compare an Autistic to a non Autistic, or use phrases like “For an Autistic…” (“You’re so friendly/empathetic/well spoken for an Autistic”, for example). Though it likely won’t come up, it needs to be said: Don’t use “cure” language.

Additionally, know that – much like gender pronouns – How you refer to an Autistic is important. Many/most Autistic adults prefer identity-first language, ie: Autistic person, Autistic child, etc… while many non-Autistic people seem to think that person-first language is most appropriate: “Person with Autism”, “Person who has Autism”. Many of us see “with” or “who has” to be offensive, as it usually accompanies the idea of us being “inflicted” with something, that it’s something separate from us, and/or is a temporary/ “curable” thing. Autism is our Operating System, it’s who we are.

If an Autistic person tells you what their preference is – identity-first or person-first – please respect it. Also: Please don’t ever say “suffers from Autism”.

11. Tone matters.

You don’t necessarily need to mimic how the parent talks to the Autistic child. Some parents of Autistics are… less than ideal in how they treat their kids, and can talk to them like they’re babies and/or idiots. Aside from issues mentioned above (eye contact, enunciation, literal speech), you shouldn’t feel the need to talk any differently to an Autistic child, than you would a neurotypical child. As an example, nonverbal children are often looked at as stupid or lesser-than, and are frequently talked down to. The fact that they don’t speak *doesn’t* mean they don’t understand, or aren’t intelligent. Some of the most intelligent people I’ve ever known are non-verbal.

12. Know that every Autistic is different.

Some of these tips won’t apply to everyone. For some, every single one will. You will likely meet Autistic children who “pass” for neurotypical.

*****

As a bit of an aside – this isn’t so much about dealing with Autistic children, as it is a bit of information about the Autism community, culture, etc…

April is coming up, and with it… “Autism Awareness Month”. Every Autistic adult I know dreads this month, as the promotion and observance of it tends to be hugely offensive to Autistic people. I’ve written about it Here, Here, and Here. I’d encourage anyone planning to do Autism charity appearances to read through those posts.

The TL;DR:

1. Autism Speaks is a horrible organization, on so many levels. Most Autistic adults and many parents of Autistics are horrified by their campaigns and treatment of Autistics. Please consider NOT supporting A$, and look to alternative organizations. I tend to recommend Autistic Self Advocacy Network, as it is “Nothing about us, without us”

2. As an extension of #1, the puzzle piece and “Light it up blue” are very much Autism Speaks symbols, and as such are pretty offensive to a many Autistics. For more information/perspective, I recommend Goggling such things as “Don’t light it up blue”, and “Autism Speaks doesn’t speak for me”.

3. The #ActuallyAutistic tag on social media – particularly Twitter – is a good read if you’d like to hear what Autistic people have to say.

A few members of The Royal Sisterhood

Ravings of a Canadian Expat: Christmas Oranges

I was going to start this entry out with something like “This time of year, the topics of discussion in groups of Canadians living away tends to turn to food…”… but let’s be real, at least 80% of what we talk about in Canadian groups is food.

Foods we miss, foods we’re now cooking because we miss the source material, how COMPLETELY inferior American chocolate is, griping about how corn syrup is in everything here and makes stuff – soda, certain candies, etc – taste weird, etc. I don’t remember us being particularly food obsessed when I still lived at home, but man… take a Canadian out of Canada, and food is the great bonding experience.

Recently, I noticed that “Christmas Oranges” don’t really seem to be a THING in Minneapolis. Like, you can buy Cuties or Halos, but there doesn’t seem to be a culture of … well, them being particularly “holiday”.

When I was a kid, we’d get one in the toe of our Christmas stocking, and it usually ended up being my favourite part. I LOVED them!

As I grew a bit older, holiday season meant buying crates of Mandarin oranges. They were the same oranges I’d have as a kid – sold in boxes, imported from either China or Japan, and individually wrapped in green paper. There was always at least one completely moldy one in the bottom, but the rest were *gold*.

I would buy several 5lb cases at a time. At least one would end up consumed within a day or two – I’d crash on the couch with a book, and snarf ungodly amounts of oranges. I’d buy more than one case, as it was usually insanely cold (I’m from Winnipeg), and I liked to have enough to last me a week or so.

… December is the month where I am least likely to come down with scurvy… By a longshot! In addition to snarfing oranges by the case, I also enjoy to make things from them, such as:

Candied Orange Peels

Cuties Mead

Cranberry-Cuties “Christmas” Wine

Cuties Marmalade

I even juiced and zested a bunch of them to make a Cuties mousse last New Years.. Oh, it was amazing.

Anyway, I digress.

This past week, I decided that I NEED THOSE ORANGES. Cuties and Halos just don’t cut it, I wanted a bit of *home*.

My first stop was a group for local food bloggers. I explained what I was looking for, and a few people weighed in with suggestions.

I should mention that part of the problem with looking for oranges like I knew back home, is that when it comes to this sort of thing, oranges suffer from the same sort of thing that Sweet potatoes / yams do. Different products are sold as the same thing, the terms are used interchangeably, and people have wildly different ideas of what is meant when you say “yam” – and, in this case, “Mandarin orange”.

One blogger commented to say that it sounded like I was describing Satsuma oranges, and that she knew they sell them at a local coop. She then mentioned that they’re more abundant in January (not the case, back home!) – so I had to make sure that she wasn’t thinking SUMO oranges (another addiction of mine). She wasn’t, so I called The Wedge coop, and grilled their produce guy.

HE agreed that I was talking about Satsumas, but then referred to them as being “more tart”. What a let down – I never would have described Christmas oranges as being tart!

I posted a quick note about my mission to a couple expat groups, and asked for info on what they remember of the oranges back home.

I got in my truck and headed over there anyway, because when you need a mess of oranges, you NEED a mess of oranges. I was surprised to see that they had several types of oranges that looked good… so I bought a few of each. I bought a whole bag of Satsumas – I know myself, and if they were even close… a bag wouldn’t be enough!

As all of this was going down, the threads were blowing up – Us Canadians are VERY passionate about our Christmas oranges, as it turns out!

As it also turns out, the whole “oranges going by multiple names” thing got further complicated by regional differences in what constitutes a “Christmas Orange”.

People from everywhere except Atlantic Canada agreed – sold in boxes, with almost everyone specifically referencing the green tissue paper. MOST people agreed that they were imported from China and Japan, though a few pockets of Canadians apparently got theirs from Morocco! I’m 90% sure I’ve never seen an orange from Morocco, so I found this fascinating. We all knew them as “mandarins”.

On the East Coast, “Christmas Oranges” are sold in smaller, wooden crates, usually with a red plastic mesh holding them in. There is no green tissue paper, and they are known as “Clementines” – not Mandarins. From my time in Newfoundland, I was familiar with them. They were definitely different from what I knew back home: A bit harder to peel, not as juicy, smaller, and rounder. Still tasty, though!

Anyway, back to the mission.

I noticed that all of the oranges at The Wedge were from either California or Florida, and I remembered that basically all of the oranges I’d seen anywhere in Minneapolis tended to be the same. I guess there isn’t a big market for imported oranges here?

I decided to follow up on another suggestion, and headed to United Noodle – a large Asian grocery store. They would for SURE have Japanese or Chinese oranges, right?

Nope. Neither did Sun Foods, another large Asian grocery.

What they did both carry, however, were Halos. Halos are fine – and they’re actually pretty close to the Atlantic Canadian idea of Christmas oranges, packaging aside – but I really wanted my Mandarins!

So, I ended up with 6 different types of oranges (as well as “Limequats”, which had absolutely nothing to do with anything, but fascinated me nonetheless!), and wanted to do a comparison. Aside from the Halos and the last “Mandarins”, all of the oranges – and Limequats – were purchased at Wedge Coop.

Of course – if it hasn’t been obvious from this blog post so far – take my findings with a grain of salt. Due to the nature of naming conventions, there’s a good chance you could buy something that is called the same as one of these, and have it be something completely different. For that reason, I am including as much identifying information as possible!


Table below is pictured in order, left to right

Photo Sold As Details
Kishu Mandarin Tiny – about 1.5-2″ in diameter! Very easy to peel, loose skin, very little pith – which rubs off easily. Good balance of sweet and tart, leaning slightly towards the tart. Fairly juicy, seedless. Expensive, but fun. (They were obviously not Christmas oranges, but I couldn’t resist!)
Halos Halo is a brand name, not an actual variety. They’re very similar to Cuties, which we tend to prefer but haven’t seen in a while. Like Cuties, the variety of orange depends on the time of year. According to the Halo’s site (here), these were Clementines. Makes sense, given how similar they are to the Atlantic Canadian “Christmas Orange” – also sold as Clementines. These were not as easy to peel as I was looking for – skin comes off in small chunks. Also slightly more tart, and had no seeds. Readily available – it was all they carried in the Asian markets! Clementines also tend to be more spherical than what I was looking for.
Sunburst Tangerine This Florida orange was very smooth and shiny – a stark contrast to the rough, dimply skin of most of the other varieties. It was VERY difficult to peel by hand – probably better to slice. Thin, hard skin, with pith that is very attached to the segments. Has seeds, tastes like a pretty basic orange (not “Christmas” orange).
Algerian Mandarin These are called “Algerian”, but were grown in California! They were purchased at The Wedge, and is one of two oranges that were labelled as being Mandarins (not including Halos, which refer to their oranges as Mandarins on their site). This had a medium-thick skin that was very easy to peel, while not actually being loose/separated from the orange inside. It had a fair amount of sticky pith – harder to remove than some varieties. Tastes right, but the sticky pith is annoying. No seeds.
California Satsuma This was the “ugly” one of the lot – irregular, kind of squat shape, with very dimply, loose skin… AND IT WAS PERFECT. Very easy to peel, medium thick skin, only a small amount of pith that detaches from the segments very easily. Absolutely my favourite, and the closest to what I remember “Christmas”oranges being. Very plump and juicy segments, and among the sweetest of those tested. No seeds.
Mandarin After paying about $4/lb for the Satsumas, I saw 3lb bags of these “Mandarins” at Hy-Vee… and they looked very much like the Satsumas, just slightly larger. These were also very easy to peel – but had much more pith. Also has the thickest skin of all. The flesh isn’t has juicy as any of the other varieties, and has a gigantic grain to it. Has seeds.

So, as you can see… not only can the names be confusing (“Mandarin” was used for three wildly different oranges, none of which was what was referred to as “Mandarin” back home… which is “Satsuma” here!), but appearances can be deceiving, also: The Satsuma and second type of “Mandarin” looked VERY similar!

I’d asked this on my Facebook page, may as well as here too – the replies were FASCINATING (here):

1. Were “Christmas oranges” a thing where you grew up, and/or where you are now?

2. If so, what exactly does that mean to you? What was the actual orange called, what did it look like, was it easy to peel or not, how was it sold, where were they grown, etc. As much detail as possible, please!

3. Where was/is this (state/province, etc)

With 2017 being Canada’s 150th birthday, it’s about time I wrote the Canadian cookbook I’ve been planning for YEARS.

“More than Poutine” will be a Canadian cookbook like no other – written by a Canadian living away, it includes both traditional homecooking recipes, as well as homemade versions of many of the snacks, sauces, convenience foods, and other food items that are hard to come by outside of Canada!

High quality gluten-free versions of most recipes will be included.

The Kickstarter for “More Than Poutine is live, here. Please consider backing, and sharing the campaign with your friends!

Aspie Thoughts on Mainsteaming.

Recently, I applied for a job.

This is a unique experience for me, as someone who’s long considered herself unemployable. It’s not that I’m incapable of working, or that I’d even be considered an undesirable hire … it’s more a matter of … how do I put this?

I’ve long felt like any possible outside career I could take up would end – in very short order – with me feeling like a square peg being forced into a round hole. I can do pretty much anything, I can learn – and master – things incredibly fast… but that ends up being a negative, for most careers. Even with my own self employment, I hit a wall and need change, new challenges, etc.

I’ve always joked that the day a career is created where I could basically get paid to problem solve all day (with lots of research involved), but where those problems were ever changing, crossing many different subject areas… that’s the day I could settle into a career.

Until that point, I would keep doing what I’m doing. I know myself well enough to have settled into a pretty decent grove – keeping things varied between costuming and writing – that I’ve managed to stave off another career regeneration well past my normal limit.

Well, I found that perfect hypothetical career opportunity, and I applied. I know there’s only a very slim chance of getting accepted… but it would be amazing. Not only would it be amazing *for* me, it’s something I could do a great job at it – it’s something that could put almost all of my Aspergian traits to really good use. They could really benefit from adding someone like me to the position.

So. Fingers crossed.

Anyway, I’ve been approaching the whole thing the way I did when I applied for MasterChef. I feel sort of bad for making the comparison, given how that whole experience was… but there are definite similarities in the whole apply -> wait a long time to hear back thing. It’s actually kind of surprising how much it’s been reminding me of the pre-MasterChef period. Though the end goal is VERY different from MasterChef, even a lot of the “training” I’m going through is similar.

I’m doing a LOT of reading and viewing. There is so much subject matter and history to get acquainted with, and it’s fascinating. Also, it’s really exciting to see all of the subject matter I could be dealing with, and interesting people I could be working with.

I’ve been studying up on the logistics involved, and formulating the plans for the life upheaval that would be involved, including a move. (This part was easy – I’m a logistics nerd, so we’re all set!)

The most perplexing area of preparation/study/etc is what I actually planned to discuss on this blog entry, now that I’ve rambled so. It’s the matter of “mainstreaming”, as someone who … well, who is pretty settled into their ways.

I’m someone who didn’t really know how to meet people and make friends until I was 24. It’s taken time, but I actually do strike up conversations with strangers now!

I’m someone who spends her work days at home, in sweat pants and t-shirts. Comfortable cotton, no irritating closures. When I go outside for errands, it’s nicer sweatpants, yoga pants, etc. Comfortable shoes (men’s sandals).

When it comes to outdoor shoes, my year looks like this:

Sandal season
Socks with sandal season
Kamik boots season
Socks with sandal season
… back to sandals season.

Those sandals are the exact same manufacturer and style across the past few years, btw.

So, in considering a job that will require professional dress… this is actually the biggest challenge to me. Over the past 13 years or so, I’ve come a long way in passing for neurotypical… but appearance is the one big area that has lagged behind.

So, here’s where I’m at:

1. Makeup

Makeup was a “Few times a year” thing, and even then, just enough to look like I tried.

At age 37, I’ve finally been convinced to invest in good makeup, and actually wear it. I think I’m getting pretty decent at it now, though I’m convinced that eyeliner (Both the invention and decent application of) is the work of the devil!

2. Hair

I cut off 6+” of my hair, and am ready to go even further. Hypothyroid disease has done me no favours in the hair department, and bleaching (for teal hair!) hasn’t helped things. I’ve listened to friends who know better, and have invested in decent hair products. It’s soft now!

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Looking more or less like and adult human being!

3. Shoes.

AUGH. I am saying goodbye to my men’s sandals, for the most part. Boo – they are so comfortable! I have invested in a few pairs of fall boots – replacing my “socks with sandals” season. They have actual heels, which is really throwing my body/senses for a loop. It’s been interesting, feeling which muscles are engaging in the whole process of walking in heels. Certain muscles feel good, as it’s a nice stretch… others aren’t as nice.

I’m training my feet for wearing heels, as my large toe joint in particular has an issue with this whole idea. A few hours every day, I wear them at my desk, walk around a bit, etc. When we go out, I wear the smallest heel, for now – I’ll graduate to taller ones little by little.

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Starter heels, and higher heels. Definitely a style upgrade from men’s sandals!

4. Handbags.

I have a strong preference for extremely utilitarian, cross-body messenger bags. For the past year or so, this has taken the shape of a Star Trek sciences uniform bag, which I adore. I’ve also been eyeing the Klingon one, which has a built in bat’leth as decoration.

.. However awesome these are, they’re not so great for the whole idea of professional look, mainstreaming. There is a lot of baggage (hah!) wrapped up in the carrying of a handbag, so this has been a weird bit of study for me. I’ve developed a bit of an obsession, though on a different track than the sort of stereotypical female handbag worship thing.

For one, I have a definite “type”, and eschew anything outside of it. As my husband was quick to point out, the ones I deem acceptable all fall pretty close to Golden Ratio proportions. It’s not something I was consciously considering, but it definitely has been holding true.

Beyond shape/ratio, I have a strong preference for actual leather, no logos. Decorative pockets are great, as long as their locations, shape, and size are pleasing.

For me, this has all culminated into the realization that I am into old Coach bags. I am not a fan of their recent stuff, or basically anything that is “current” fashion, regardless of designer. While not being into anything current is a bit of a blessing on the wallet, I’m a bit dismayed at my apparent steadfast preference for a designer name – it’s jarring, for someone with a past refusal to spend more than $30 on a purse.

On the upside, “old” means “much more reasonably priced on Ebay”… and they’re built like SADDLES. I’m pretty sure their old leather purses will last decades. A $130 purse that lasts even a decade is a more economically sound choice than spending $30, and replacing every year when worn out.

It’s been weird, researching purses with regards to looking more adult/professional/”neurotypical”. I knew that there are a lot of status-type issues wrapped up in the choice and purchase of a purse; I knew that colours and styles are seasonal, etc.

What I had never considered before were the logistics and “status” messages wrapped up in the type of purse you carry – handbag, cross-body, etc. While I understood that my Star Trek messenger bag would be deemed less than professional, I assumed it was solely because of the “Star Trek” – not necessarily the “messenger bag”. Sure enough, when observing people… you don’t see a lot of professionally attired women carrying cross-body purses. (Those that do have skinny straps that dig in, not nice, wide utilitarian ones!)

Switching to a shoulder bag has been weird, with losing some use of the arm I’m carrying it on. I’m constantly adjusting it to be on my actual shoulder, as it slides.

Handbags are even worse, carrying in the crook of the elbow. I actually had to google “how do you carry a handbag?”, as it was something I’d never paid attention to. My preferred method is to put my forearm through the straps, aim it downward, and support the bottom of the bag with my hand – it’s less strain on the elbow, and prevents it from flapping around and annoying me.

My husband says it looks like I’m carrying a football, however. He demonstrated how the professional women at his work carry theirs, with their hand aimed upwards. He then related it to a Tyrannosaurus Rex, made a generic “raptor” noise, and we both dissolved into giggles.

I find the whole thing fascinating, though sort of ridiculous. I don’t get the point of spending more money, to lose the use of one arm. If you are a professional, you are likely very busy and DOING things… why is it seen as a more professional look to hamper the use of one – usually the dominant – arm? That’s illogical.

I’m assuming that – much like pockets in women’s clothing – it has its roots in ingrained, systemic sexism. That a woman doesn’t need to be doing anything, so it doesn’t matter if her mobility is hampered. That being the case, shouldn’t messenger bags be ULTRA professional?

The same thought can be applied to shoes. Heels are “professional” (to a degree, anyway), but comfortable sandals are not. Heels cause you to take smaller strides, hamper speed, etc. They cause bodily fatigue – why is that professional? Men’s dress shoes are such that their strides aren’t significantly hampered, after all. It’s kind of a gross message, when you think about it – especially considering many workplaces actually require women to wear heels.

When you combine heels and handbags, the problem is even greater than just “your stride is hampered and your arm/hand dexterity is hampered”… you add in issues of balance and muscle strain.

Who knew there would be so much to consider when choosing *accessories* that have literally no impact on anyone else!

Anyway, I digress. Unfortunately, my glorious TARDIS wallet was similarly ruled to be less than professional, and I’ve had to buy a more adult looking wallet. While my TARDIS wasn’t actually “bigger on the inside”, it held a lot of stuff – plenty of cards, a coin area, a sections for bills, etc. It’s been hard to find something similar in “professional”.

Wallets shouldn’t be so hard to buy! While searching for a nicer wallet, I’ve found that many are tiny. A whole bunch of them don’t have space for bills, and/or don’t have a clear window for ID, etc. Many don’t hold more than 5 cards. I’m no credit card demon, but almost every store one shops at now has some kind of loyalty card involved!

Perhaps not carrying loyalty/reward/discount membership cards is also a status thing? I suppose that fits the pattern established.

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If it were any more perfect, it would have a cross-body strap. (And would then make me feel like Indiana Jones!)

5. Social

We are getting out of the habit of holing up in our “Fortress of Solitude”, and aiming to be more social. While that has led to more going out to events *with friends*, the big change has been going out more just us + strangers. We recently went to an event for Canadians living in Minneapolis, and met people! We’ve also been going out to the theater, which has been fun.

It’s kind of amusing to me that the social stuff has been far less stressful / less effort than figuring out the handbags/shoes thing!

To be fair, though, I’ve spent a lifetime observing neurotypicals. I’ve paid attention to their behaviours, social norms, etc. For the most part, I can sort of blend in on that front, now… though I wish I’d paid attention to things like “how do you carry a purse?”!

So, I’ve been focusing on honing my reactions to people online – quite the task, given the current political climate. I’ve gotten a lot better about measuring my responses, and just keeping my mouth shut in certain instances. I’m waiting for my husband to get sick of my “LOOK AT WHAT I RESTRAINED MYSELF FROM REPLYING TO!” messages!

… So, that’s about where I’m at right now.

Moving Forward

The next two areas to tackle are clothing (suits, ack!), and nails. I’m a “short nails, no polish” kinda person. I don’t see the short nails thing changing (even though I know long nails are a professional/feminine thing), but I have resolved to try nail wraps. Perhaps that would solve my problem of chipping polish almost immediately.

Overall, I’m finding it really amazing to me how much I have to actively work *against* comfort, to project an image of professionalism. Uncomfortable shoes and handbags that hamper mobility. Restrictive clothing that requires MORE care than just normal laundry. Nail length that restricts activity, polish that doesn’t hold up to working hands.

To go to work, you’re expected to maintain an image that actively hampers work. To show that you can do a job, you have to employ attire and accessories that eschew comfort and hamper your stamina and focus.

We are a truly bizarre species, aren’t we?

Maple Leaf Roses

This weekend, we went up the shore to Duluth, to enjoy the fall colours. Managed to not take any photos of anything, somehow… but we DID collect some leaves. I’ve been wanting to try my hand at making maple leaf roses for the past couple years, ever since seeing them popping up on Pinterest. October is usually my busiest time of year, but with my elbow injury preventing me from sewing… I finally had some free time.

These came together pretty quickly once I figured out what I was doing. All told, it took about 1 hour from the time I first sat down. I soaked the leaves overnight, let them dry to the touch in between paper towels, and then went to it. I folded and wrapped them around lengths of florist wire, using floral tape. Once they were all done, I soaked them with some serious hairspray, and let that dry.

I love how they turned out – a gorgeous bit of fall colours right in my living room! These would be so pretty as wedding bouquets or centerpieces – they did lose some of their vibrancy overnight, though. Thankfully, my husband took these beautiful photos while it was still bright and fresh!

What do you guys think? Any plans to make a set yourself?










Explaining Autism: Interoception, and Something Other Than “Pain”

Earlier this week, I had to go see a doctor about an ear issue. As they asked me “On a scale of 1-10, what is your pain level”, I struggled to provide an answer they would understand.

After over three and a half decades of life as an autistic woman, I can honestly say that one of the most frustrating things about life on the spectrum is the lack of shared frame of reference between autistic people and neurotypical people. Many/most people tend to think of their views as being the default, and have no idea what others live.

We’re guilty of it too, of course. Neither my husband or I had ANY idea that most people don’t feel their entire digestive system / process happening. We weren’t really aware that – much like the variety in sensitivity to smells, for example … people can have wildly different levels of interoception.

Interoception is your internal sense, your awareness of what’s going on with your body. Hunger, thirst, temperature, and more.

For most people, interoception covers the basics: Tells you when you’re hungry, lets you know when you’re getting sick, alerts you of the coming need to find a washroom.

For some autistics, interoception is muted: They don’t get the same feelings until much later in the game.

For others, our interoception is hyper sensitive. We feel EVERYTHING… and it’s really annoying. Where you feel “hungry”, I can feel when I’ve specifically not had enough animal protein lately. (It’s a terrible, full-body feeling. It feels like every cell in my body is sluggish and dying). I can feel when I’m low on iron, before it dips past the low bar of “acceptable”.

Think of it like the dashboard of a car.

For the most part, it will tell you when you need to top up your oil, how fast you’re going, etc. It lets you take good care of your car, without overwhelming you with unnecessary information.

For those with less sensitive interoception, it would be like having a car where the sensors don’t tell you that you’re running low on oil until you’re basically on fumes, and about to blow your engine.

For those like me, it’s like… having a car where all of the sensors are WAY too sensitive. You hit a small bump in the road, and it sets off, say, the O2 sensor.

Unlike the earlier two examples, however, the hyper sensitive interoception wouldn’t be akin to the warning light blinking on for a few seconds. It’s akin to multiple loud alarms and flashing lights going off every time that warning symbol is tripped.

Take pulse, for example. That’s another instance of assuming that my experience is just the default – I had no idea that most people aren’t *constantly* aware of their pulse. I hear and feel my own constantly, whether it’s running low or high. I don’t have to think about it, it’s just there – like slightly too-loud background music.

The problematic thing is that I am also hyper aware of tempo and force with it. If my pulse goes up or down by even 3-5 BPM, if my blood pressure rises or drops a little, I can sense that change – and the warning lights go off. I understand that those with normal interoception can feel their pulse “racing” when it happens – as a result of strenuous activity, for example. For me, an uptick of even 5 BPM comes off as “racing” to me, even when it’s completely within the normal, healthy pulse range. It’s… distracting.

I’m not even sure I’m explaining this in a way that makes sense, because I don’t have a ton of frame of reference on life as a neurotypical, beyond conversations that I’ve had with friends. Fascinating conversations happen, when both sides discuss “what is this like?”, “How does X feel to you?”, and “If you can feel Y, then what about ….?”. I learn a lot from such conversations.

Think about it … how would you describe a colour – or even explain the concept of colour – to someone who has never had vision before? Conversely, how would a person who was born blind explain their concept of sight /lack thereof – never having had it – to a sighted person? It would be very difficult.

When neurotypicals encounter autistic people with sensory issues – particularly from what I read of parents of autistic children – there seems to be this feeling that autistic people are being babies or drama queens, over sensory overload. There isn’t a lot of effort put into understanding that we just tend to feel things differently.

Now don’t get me wrong, I am 100% OK with being Aspie, and I appreciate the “gifts” I have. I put many of my autistic traits to good use. As an Aspergian female – with a keen sense of pattern observation, to boot! – I enjoy a HUGE amount of “pass privilege”. Most people have no idea that I’m on the spectrum when they meet me – though this was certainly not the case even 15 years ago. (Observation, empathy, and pattern recognition put to use in understanding NT ways!).

As soon as I get even a tiny amount of fluid behind my eardrum? All of that “passing” goes right out the window. I am never as visibly, stereotypically autistic as I am when there is something wrong with one or both of my ears – and I cannot help it.

I am 100% aware that my experience of ear issues is completely different than the average neurotypical experience, and that my outward appearance from it definitely comes off as “weak” or “crybaby” or “drama queen”. My neurotypical friends go to work when they have ear infections! That will never cease to amaze me. I’m so terrified of the *possibility* of an ear infection, that the slightest twinge in my ear – feeling like there could be an oncoming issue – is enough to send me into a full, anxiety-ridden meltdown.

I’m not an anxious person. I can deal with major stresses, no problem. I have weathered storms many people will never see – literally even (Tornado!). I may actually thrive on stress, for that matter – I get things done.

I’m also not a wimp, physically. When I was younger, I refused to let a doctor put a cast on my broken ankle, because I had a VERY important (to me) skating competition that weekend. My skates were stiff as bricks, after all – so I figured I’d be fine. I was – I landed my Axel, on that broken ankle… and used crutches while not actually skating. I went in to get it casted up the day after the competition. Smart? Probably not… but I think it does speak to my ability to deal with pain.

Similarly, I’ve landed a botched death drop in such a way that I stabbed the heel of my blade into the palm of my hand, deeply… put a thick glove on and went out to try it (the spin, I mean) again. I have sliced myself wide open, broken bones, pulled and torn muscles. I had a back injury after a car accident that was bad enough, I was told I’d “never walk properly again”. It took a LOT of painful work, but I rehabbed THAT one.

My ears, though… are my Achilles heel. Anything “off” about them is my Kryptonite. I’m not even talking about a full blown infection – which, as I understand it, even NT people feel as actual pain. I’m talking about the subtle, non-painful stuff.

Right now, I have a “small” amount of fluid behind my eardrum. The doctor was very “whatever” about it, it’s no big deal. From all I can tell from neurotypical friends / those with less sensitive interoception, that’s an understandable reaction – that it’s a mild annoyance at best.

It’s not fully clogged, I haven’t lost MUCH hearing (it’s definitely muted slightly), there’s not even enough water that I can hear it sloshing. It’s not even that full/popped feeling you get from changes of pressure. I can absolutely understand how – to those with less ridiculous senses – this would be no big deal.

… but it’s driving me nuts. If you were to have a pillow smothered over your nose and mouth, that’s kind of what it feels like in my ear – complete with the resulting panicky feeling. The AIR feels different in that ear, and I am all too aware of it. It’s off balance from what the other ear is experiencing. While it’s not actually affecting MY balance, the lack of symmetry in ear sensation is tripping my “warning lights” terribly.

… but it’s not PAIN.

The thing is, there is a word for “pain”, and there is a scale for it. Sure, my 5 may not be YOUR 5, but at least we can try to plug in a number based on our perception of 1 and 10.

… there isn’t such a term – or scale – for what drives me to freak out about my ear.

When the doctor asks me “1-10, what is your pain level?”, truthfully, it’s a 1. If I say “1″, he has no sense of the urgency I have to fix this, how absolutely unacceptable the sensation is. People don’t curl into a ball and cry their eyes out over a “1″, after all.

If I translate it into “1-10, what is the level of unacceptability here?”, it would be a 9 or 10. I can’t ANSWER with 9 or 10, because pain is a very specific concept, and he would take that 9 or 10 to mean something VERY different than what is going on.

I have to wonder how medical care of autistic people suffers, because of this break in experience / frame of reference. I’m verbal, and I like to think I’m fairly articulate. I spend a lot of time thinking about stuff like this, and put care into explaining it – but not all people on the spectrum are, can or do. My “bridge” to the NT side of things is fairly well developed, because I’ve been able to put a lot of observation, thought, and effort into it. Not all Autistics enjoy the same level of.. NT fluency?

I digress.

The reason I write this, is because I’m hopeful it can shed some light on what life can be like for people like me, and hopefully prompt some understanding and empathy for autistics that have a rough go of things.

Remember, though, interoception is only ONE sense, as systemic as it may be. Many of us have multiple senses that are overdeveloped – taste, touch, sight, hearing, etc.

Going back to “It’s akin to multiple loud alarms and flashing lights going off every time that warning symbol is tripped.” … that’s for just the internal sense. Imagine living with that as your reality, while ALSO being exposed to external stimuli, while experiencing it at a higher sensitivity than most. The sound of an automatic door or grocery conveyor belt that is slightly out of balance can be physically painful, feeling like someone is drilling your brain. Fluorescent lights can be similarly painful.

When your senses are hyperactive, you can have that level of stimulation coming at you from not only multiple outside sources (for example, a HELLISH Cub nearby has the door, conveyor belt, AND lighting issues happening all at once), but internally.

When you see an autistic person having a meltdown, know that there is a very good chance that this is the reality that we are living with.

Everyone is different, the levels to which we experience things are different, and even the triggers are different (for example, mid range tones bother me more than my husband, who is more sensitive to certain frequencies of high pitches than I am. )… but when sensory overstimulation is an issue? Well, it could be something very different than what you experience in your own life.

Not only is this relevant to the time of year – colds/flus/seasonal allergies / hellish barometric pressure swings / etc – the holidays are coming up. With all of the extra smells, lights, noises, etc that the holidays bring… please be kind to the autistic people in your life.

On the 50th Anniversary of Star Trek

With the official release of Hedonistic Hops just a week away, I participated in an author interview yesterday… and subsequently kicked myself for one of my answers.

The question was something like “If you were stranded on a desert island, what 3 books would you want to have with you?”.

Without hesitation, my reply was “A book on tropical plant identification, a book on survival skills, and a book on primitive boat making”.

Hours later, it hit me that I may have answered the question, but managed to miss the spirit of the question – that they were likely framing “what are your favourite books” in a whimsical manner. I guess I was so focused on the idea of being stuck on a desert island, I went straight to the most logical answer… rather than indulge in whimsy.

Whoops.

I fussed about it a bit online: I categorized it among “social missteps”, which – as an Aspergian adult – I’ve been trying to be better about. My friends were very nice about my gaffe, making comments about how they appreciated my literal interpretation, etc. A comment was made about “Spock level logic”.

How fitting it is that just a few short hours later, September 8th hit – the 50th Anniversary of Star Trek.

As everyone I know seems to be pouring their hearts out about what Star Trek has meant to them, I figured I should do the same!

My introduction to Star Trek came from an unexpected source: non-geek bullies.

Though I wasn’t diagnosed till my mid teens – and there wasn’t even a name for it in my early years – my Aspergers didn’t go unnoticed by the other kids I went to school with. When I was very young, the other kids called me “Spock”. I had no idea what that even meant, until I watched Star Trek. Though it was used in a pejorative sense – as a slur against my being “different ” – I took it as a compliment. This was a character I could relate to!

There was no representation of people like me in the media in those days. While he may have been a pointy eared alien, Spock was the very first “person” I was ever able to relate to – on screen or otherwise. I guess that him being an alien is appropriate enough, having always felt like I’d been dropped off on the wrong planet! (Which I now know is a common feeling with Aspies).

I have no idea where to even start with describing what that’s like. There was no social media back then, there was no one “like me” in my elementary school, no one like me on TV… Except Spock. Kind of a little glimmer of hope that I wasn’t a complete freak, I guess? At the time, I rationalized that… Sure, he may be a fictional character, but SOMEONE came up with him. One way or the other, the Spock character gave me how that there were other people like me out there. It was a BIG DEAL… one that I can’t accurately put into words.

On the subject of “representation matters”, I always appreciated how diverse Star Trek was. I appreciated that there were all these characters of different backgrounds, races, even SPECIES… just working together.

As I grew a bit older, I came to notice and appreciate that the diversity I so loved about the show was so… organic. That it was written so naturally, and not in a “Look at us! We’re being so EDGY!” kind of way. I appreciated that this show – one that was almost a decade and a half before my time – put this vision of the future out there. It was… hopeful.

As I grew older yet, I met my “tribe” in the Geek community – many of whom are Trekkies. I have friends that I met as Klingons first, and “Klingon” is how I think of them. I suppose some of them might feel the same sort of way about Klingons, as I did – and do – about Spock.

I met and married a man who not only agrees that going to see “A Klingon Christmas Carol” is the only really acceptable holiday tradition for us, but was RIGHT there with me when Leonard Nimoy passed – leaving work early and instituting “grief sushi” as a thing. Nimoy was the first and only celebrity passing either of us cried about, and we were both pretty traumatized by the surprise meeting of Spock Vegas just a month later. (Though he seems to be a lovely man!)

Oh, this is getting dark. I guess it’s hard for me to talk about Star Trek without the fixation on Spock- and Nimoy, by extension. Neither one of us are what you’d consider “Trekkies” – we’re casual fans, in general. We haven’t seen all the series, though we enjoy the movies, and enjoyed TNG as children. We enjoy the enthusiasm of our Trekkie friends, for sure! (I will admit to having been SO pissed off at how they killed of Tasha Yar, that I stopped watching. LOL)

Anyway. In the past years, autism has come to be slightly better represented in the media, so I am very happy that kids of today have non-alien, “real” characters to look up to: Gary from “Alphas” (Ok, he’s a mutant, but STILL), and Connor from “Degrassi” (The most accurate representation I’ve ever come across), for example.

… but I will always be thankful to Star Trek, Gene Roddenberry, and Leonard Nimoy in particular for giving me the gift of Spock, and the gift of … relating.

I’m thankful they’ve given that same gift to other friends of mine, whether as Klingons, as women, and/or as people of colour. It’s a beautiful thing, and definitely a show – and milestone anniversary! – to be celebrated!

So, Happy 50th, Star Trek! May you continue to Live Long and Prosper.

PS: Also, thank you for making William Shatner famous. That man is a national treasure.

Sad to “Kiss Them Goodbye”…

TheNylonsFeatured

A couple months ago, I came across a notice that upset me greatly – The Nylons were going on a farewell tour, before calling it quits.

I want to talk about what all transpired as a result, but I warn you – this is going to be the most emo post I’ve ever written. Probably going to be pretty disjointed too, I’m sorry! I have a lot of feels right now.

So, I’ve been listening to The Nylons since I was about 4 years old – they’ve been together as long as I’ve been alive, though. Their song “Up the Ladder to the Roof” was popular on the radio station that my mother listened to, and I LOVED it. Through all of my other favourites in music – Eurodance, Celtic Rock, etc – this one song has stood the test of time and remained a favourite all the way to today, for me.

I loved watching Brian Orser skate to “The Lion Sleeps Tonight“, and Landry/Johnston skate to “Bop til You Drop”.

As I got a little older, my little sister and my “peers” discovered boy bands… and I never understood the draw. My sister would plaster her wall with NKOTB posters… I would have to go to the Centennial Library in Downtown Winnipeg to search through Microfiche for old news articles about The Nylons, and print included photos off as MY wall decor. My little sister would have NKOTB dolls, a sleeping bag, accessories, etc.

… I got some FIMO clay and made jewelry inspired by the angular Silhouettes on the One Size Fits All album cover. Way too big and heavy for anyone to actually wear, but it was one of the few ways I could actually explore and express MY fandom.

When I was 12 or 13, I got dropped off to the Centennial Concert Hall, alone, for my very first concert. I was the youngest in the hall by DECADES… and I loved every minute of it! I’m pretty sure Micah Barnes sent me careening into puberty, too. He became my first celebrity crush, even though he was probably twice the age of all the boy band guys my sister and peers fawned over. That fabulous 90s hair! His dancing!

I remember so much of that concert so clearly, it’s amazing it’s made it with me this long. I can even remember the final line to a joke – more like a spoken word poem? – that the opening comedienne made. I remember she was blonde, and it was snarking about her ex boyfriend, in talking about his sweater. “It was 100% ACRYLIC.”

I learned about relationships. Rather than grow up on some of the relationship themes you see in boy band music or other top 40 stuff, I grew up listening to a more mature message. “That Kind of Man” warned me about.. well, that kind of guy… long before any instance of “The Talk”. The Stars are Ours, A Touch of Your Hand, Grown Man Cry… Sigh. So much beauty. I could rattle off song titles and themes all day. It was all night and day to the kind of relationship drama I’d hear about from kids in school… and a HUGE contrast to what I’d learned of relationships from my parents. They provided themes and examples to aspire to, when nothing in my life did.

When I was about 16, I saw them in concert again – again, on my own – and I’ll never forget what happened. The guys had said something that prompted a cheer from the crowd, and I’d let out a LOUD “WOO!”. Arnold Robinson pointed right in my direction and said something raunchy. I don’t even remember what it was, exactly… I just remember turning bright red and trying to disappear into my seat. To this day, I feel awful about it. Like… guilty somehow. There was no way he could have known he was saying something like that to a 16 year old – I think the next youngest person there was in their 30s! I felt awful!

Arnold was always my favourite. He had this deep, rich voice… unlike anything I’d heard before, or have heard since. The passion and energy he put into it.. Ah hell, lemme just share a video. The sound isn’t the best on this, but trust me, in person? Goosebumps.

.. And here come the tears. Augh. He passed away a few years ago, and … I don’t have words.

He had retired from the group around the same time I moved to the USA. I was so upset, I hadn’t bought a CD or seen them live since moving to Minnesota ten years ago.

Yes, I know I’m a terrible fan. In my defense… you should never underestimate an autistic person’s inability to handle change. I try to be good about it most of the time.. And most of the time, I CAN roll with the punches. Arnold leaving the group? NO.

I was still feeling pretty petulant about it when I heard the news of the farewell tour. I tearfully told my husband that we would need to plan a last minute trip to Winnipeg, and he was totally fine with it. As it was happening the day after our 10th Anniversary, we decided to consider the trip to be our anniversary “thing”.

As we arrived at the concert venue, I changed my Facebook status to “I’m about to be emotionally compromised, send kitty pics, please!”… and then proceeded to bawl through the whole damn thing. (Thank you to all my friends who responded my request, by the way – HUGE thread of adorable cat photos was there for me when the concert was over!).

It’s weird when you get really emotional, and you can’t figure out why. It’s like someone just turned the faucet on in the beginning, and I couldn’t do anything about it. I spent a good deal of the concert lost in my own head.

“This is the last time I’ll hear this song live”.

“I am such an idiot for not seeing them more often, while I still could”

“I miss Arnold. I remember exactly how he sounded, singing this very song. RIP”

“This group started the year I was born. Claude has been at this as long as I’ve been alive. Now it’s over. *Insert various thoughts on facing my own mortality*”

… and then there was the matter of trying to figure out why it bothered me SO much. Many people there were fans, and not ugly crying their way through it, after all.

What I came up with was this: Having loved them for almost as long as I’ve been alive, their music has really factored into a lot of memories for me, both good and bad. I’ve listened to their music in celebration of some life events, and their music has gotten me through some other, horrible life events.

During the darkest years of my life, growing up with constant physical, verbal and psychological abuse at the hands of my mother and stepfather, their music was there for me, a mental escape from the hell I was living in. When I got out of that and moved in with my grandparents around age 12, they were the ones who drove me to that downtown library, and who dropped me off for concerts. When my grandparents passed away, I consoled myself with that music. Through every move, every nasty breakup, every major life event… I think The Nylons are the closest thing I’ve had to consistency in my life.

Once I realized that THAT was what was upsetting me, the tears slowed somewhat. I still cried a few times more during the concert – some out of happiness, some from laughing so hard, etc.

The concert was amazing, as always. You know, four year old me had incredible taste – I can’t think of any group with anywhere near the talent of these guys. Just ridiculous control over their voices, their lungs, etc. I love their banter. I loved the addition of rapping, such as in “Don’t Look Any Further” – where the rap was performed by a guest artist. (OMG, can we appreciate Micah’s hair for a moment? Glorious)

Claude… man, I’ve seen him in concert when he still had dark hair- now, it’s white. The amazing thing is – for the most part – he sounds exactly the same as I remember him sounding in that first concert… with about as much energy, to boot!

At the beginning of the concert, I joked to my husband “Quick, guess which one is the original member?” and his reply was “The one with the most energy on stage?”… and Claude really kept it up the whole way. Dancing around, great showmanship.. Even doing the moonwalk at one point. I wish I had half that energy NOW, never mind “when I get to be that age”.

… I finally accepted Gavin Hope. It only took me 22 years to get over my snit about Micah no longer being in the group. Good lord… I am such an asshole! Gavin was hilarious. He won serious points with my husband by doing the Carlton, and kept us laughing the whole time. I wish I’d given him a chance sooner… what a treasure he is!

At one point, they surprised the audience with performing a “bucket list” song – “For the Longest Time”. Apparently I was FAR from alone in wishing they’d do it, and they did NOT disappoint. (Bawled through this one, too!). How often do you see a cover that blows the original away? It was very special… an honour and a privilege to watch / hear!

Towards the end, they performed “Me and the Boys” – a song that I’ve loved for decades, but I’m pretty certain that I’ve never actually heard live. It sounded like some of the lyrics had been changed to personalize it to some of the new members, but I couldn’t make out what was being said in those parts. When Claude belted out “Dance, well I can really dance, you ought to see me move across the floor”, it felt… poignant, somehow. These were lyrics written over 30 years earlier, and here he was singing it with just as much energy, and living up to it – he really CAN dance, and we really enjoyed seeing him move across the floor… myself for the last time, my husband for the first AND last time.

… and it also felt special that this – the final time I’ll get to see them live – was also the first time I’ve shared the experience with someone. It felt profound and symbolic, but not in a way I can really put into words coherently. The concert happened at a time when I was already facing themes of saying goodbye, and losing ties/connections to the past. To share the experience for the first time, with my amazing husband – the light that has balanced all the dark of the past – it was beautiful.

(As I write this blog entry, and think back on all of those earlier themes on what to aspire to in relationships, I am so happy to report that my husband lives up to all of them. I’m listening to some of their older tracks as I write this, and they give me the same warm fuzzy feeling they have my whole life… just like he does. Comfort, love, safety, reliability…)

We didn’t stay for the meet and greet, because I was a mess and knew I wouldn’t be able to put anything worthy into words at the time. I guess you could say…

I won’t ask you to stay
I can love you when you’re far away
Please, don’t stop to say goodbye
Unless you want to see a grown woman cry

…SO here I am, trying to be a little less messy (whoops) and a little more coherent, trying to put into words… just how much this group and their music has meant to me.

If you guys are reading, thank you for everything you are and have done. For all of the lightness, smiles, laughs, joy, and tears that you’ve brought not only me, but the rest of your fans. You are amazing – a national treasure – and I wish you all of the best in your future pursuits.

TheNylons1

Tornado Recovery Update: Iron River Construction Review

Last night I received a disturbing, unprofessional email from the construction company we hired after the tornado. I’m still not sure if the fact that yesterday was exactly 4 years and six months from the day of the tornado makes the ordeal we’ve been going through even more sad, or if I should laugh about the timing of the email.

Back when I wrote Twisted: A Minneapolis Tornado Memoir, I raced to get it released for the 1st anniversary of the tornado. I thought we’d be done everything, and that anything left would be minor. Little did I know that 4.5 years after the tornado – to the day – I’d find myself looking up what all agencies I have to report the construction company to.

It’s been a long and sordid tale, much of which never made it into the book. So, allow me to update… you might want some popcorn for this, as it’s pretty ridiculous. I actually have no idea how to lay it all out here, either… I think I’ll just post in chronological order, going on a series of Yelp reviews I posted as this happened:

*****

September 9, 2015 : My First Review of Iron River Construction

We hired Iron River for major repairs after a tornado destroyed our house in 2011. It’s now 2015, they’re not finished, and … this review is going to be a really mixed bag.

A friend recommended Iron River to us, and they were really happy with work they’d had done. We met with the owner, Tracy, and really liked what she had to say. She was down to earth, nice, and we could tell she wasn’t one of those con artist types that had been SO prevalent in the area after the tornado. We hired her.

Things started out wonderfully. They were fast, efficient, very patient and understanding. Pete (I don’t believe he’s with them anymore) was particularly amazing. At one point during the tornado repairs, he even offered to go get some chicken soup for me when I was sick. I didn’t take him up on it, but still appreciate the offer. Tracy offered up the use of her roofing crew – directly, not through Iron River – to move a large tree log out of our backyard and into a truck for me to bring to a mill., and that saved us a ton of stress. I appreciated it!

When a problem came up (the roofers damaged the skylight), Iron River replaced it with NO fuss or charge to us. We were very happy with their service, and I enthusiastically recommended them to several friends as a result.

Once the roof was replaced and we started work on the kitchen, the problems started. We were now dealing with Rick as a the project manager, and it was terrible. He was rude, condescending, and kept giving us dates that he would then slack off on – despite having them written in a contract! – when something “bigger” came up. He flat out told us on more than one occasion that a more important job had bumped our kitchen. Well, great. I was less than thrilled about some mansion in Stillwater getting a fancy remodel, when I didn’t have a usable kitchen (ie: after a tree had come through the roof, it was GUTTED. Electrical, plumbing, everything had to be redone.). We asked for a different foreman – ideally Pete – and Tracy agreed, but that never happened. At one point, the gutted kitchen sat untouched for over a week, as we were constantly bumped for other jobs.

The communication with Rick was beyond terrible; there were all sorts of issues. At one point we had a plumber thinking that he was handling our bathroom remodel – that had never even been a consideration. Rick expected me to drop what I was doing to call the plumber up and tell him that no, this wasn’t the case. I had to take time to deal with HIS poor communication.

At another point, Rick gave us two hours notice that there would be a window inspection happening, with a three hour window of when that would happen… and the inspector never showed up. Completely wasted our day, scrambling to make sure we’d be there for it with NO notice.. For nothing.

When the kitchen work was finally complete, we were very happy with the quality of work – just very unhappy with how it had been handled. We had enough stress on our plate from the tornado, and the tons of other things we had to deal with surrounding that . You hire a contractor to deal with a big repair and get all of the individual stresses OFF your plate. We really feel that Rick added far more stress than hiring Iron River for the kitchen actually mitigated, in the end.

Things got extremely awkward for us when they had some interoffice drama. One of their construction guys who’d been working on our house – Steve – apparently had an affair with their receptionist, who was married to one of their other contractors… the guy who would be doing the wrapped trim on our windows, as well as the gutters and everything. It was all kinds of drama that we did NOT need to be exposed to, and got really weird and uncomfortable when the receptionist would invite herself over to hang out with him while he worked, at one point bringing her kid with her. I don’t believe either of them are still with the company, though.

After inspection, we were told that the new windows Iron River installed were not up to code by both the front door AND the back door. They sent someone by to install window film on the back, but he neglected to put the stickers on to indicate that they’d been treated with the film to bring them up to code. This was in 2011.

Since 2011, I’ve been calling and emailing Iron River every few months, trying to either get the information for the installer, or to get them to send him back out with the stickers, and to deal with the front window. At first I was told that Tracy would have to look it up and get back to me, then the calls and emails just went completely unreturned.

*****

September 29, 2015 : My Second (Updated) Review of Iron River Construction.
Had to post as a second review a bit later, as the first was WAY too long, Yelp cut it off and made me wait!

In May of 2015, we were hit with a crazy hail storm, and the insurance company wrote off both new roofs – house and garage. As we were 100% happy with the roofing portion of our dealing with Iron River, we thought that this could be a good opportunity to finally get the windows finished also. We called them in on this set of repairs. We heard back from them on May 13, 2015.The claims adjuster came on May 21, and Iron River sent their new Sales Manager to meet with him / us.

Mark, the new sales manager was VERY understanding and apologetic about the 4 years of nagging with no results. I told him that before we would get the roof done, they would need to bring our windows up to code, per the original contract. He agreed, and was very reasonable about it. He talked about how important customer satisfaction was to him, etc. We believed him.

May 29 the installer sent the stickers to them for the kitchen windows. June 5th, they came by with the stickers. June 25th, they received the window film to treat our front windows, and told me I’d be contacted shortly for install .On Jun 29th, They installed the film on the front windows… and found that the windows hadn’t even been installed properly.

June 30th, we woke up to see that the film was bubbling and peeling horribly. From the street, our front windows looked like they’d been smashed! We immediately got a hold of Iron River, who told us that there must have been sap on the windows to prevent adhesion. … even though there are no trees anywhere nearby, as we lost them all in the tornado. He said that they would go ahead and order tempered glass window sashes, as they should have in the first place.

Then we didn’t hear anything for a month.

July 27th, we were told that the window had been ordered, and should be in that same week, or early the following week. I asked if they were still interested in quoting for roof damage, did not get a reply on that.

August 3rd, Mark emailed to say that they were expecting the windows that week and we’d be contacted shortly.

August 6th he emailed to say that the windows had arrived, and we’d be contacted shortly.

August 14th he emailed to ask if we’d heard from the installers yet. This annoyed me, because it came off like the left hand didn’t know what the right was doing. No, we had not heard from them.

August 17th, we finally heard from Greg, one of the installer, who said he’d be calling us that week. At this point, our front windows have looked smashed for over a month and a half. Very trashy and embarrassing.

August 24th, they brought and finally installed the window sashes

As I post this, it is September 9th. The roofing company we settled on when this all started going south is currently up fixing the roof, and Mark from Iron River JUST emailed to ask me if we still want them to do the roof.

Going more than 4 years with repair permits taped to our kitchen door- that could not be closed out without the windows being brought up to code – really wears on a person. The first 6 months-1 year after the tornado was incredibly hard. We got almost everything done in that time, just a few cosmetic things yet to do. We just wanted to move on from the tornado, and not have that reminder there every day, telling us that it STILL wasn’t over. 4 YEARS! For just stickers and film on the front windows.

I guess they had bigger jobs to focus on… but I’m really unhappy to have been left hanging like that, for so long. Tracy knew the toll the tornado had been taking on us. They did SO much work, so well, and had been so good through most of the process (with the glaring exception of Rick). It really sucks to be left with such a negative final review on them, over 4 stinking windows.

Window

The window, the day after film installation. The photo doesn’t do justice to how awful it looked – the neighbour across the street stopped me to ask if we’d been vandalized!

*****

At this point, I thought things were done. We had the windows, I had left a very fair review. Over a month later, I was shocked to receive a notification that my review had a reply from Tracy, the owner of Iron River – she had not emailed me about ANY of this, the whole time.

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*****

October 20, 2015 : My Third (Updated) Review of Iron River Construction.

Addressing Tracy’s response:

That’s an interesting interpretation. Where to start?

Maybe with the personal attack, as I was nothing but fair to you in this review. I’m blown away that you would blantantly lie about me in response.

For one, we decided not to contract with the first person who we signed with, as the owner of the company decided that his son had under quoted, and wanted to jack the price way up AFTER we paid the deposit on our agreed pricing. He was rude, so we did not hire him. That’s it – no one was “thrown off” anyone’s property. I’m not sure where a second contractor came in?

I’ll address the “very high maintenance, difficult and demanding person” in a minute..

You guys went the extra mile at first (aside from the kitchen problems), while there was still a lot of work to be done. That is why I recomended you guys to friends 4 years ago, and why I gave positive reviews back then.

When it came to the very last bit – bringing your window install up to code – I could not even get a returned call from you, for several years.

It took 4 years of nagging you for your window guy to bring the stickers to get ANY response on that. How difficult would it have been to have him bring the stickers for the back window, and schedule the film to be installed on the front windows? That was 4 years of us not being able to clear out our permits. I don’t think it’s “demanding and difficult” to expect you to bring that up to code faster than *four years*!

The only reason we called you about the roof was because you HAD done a good job with that, and we were hoping you’d see it as incentive to *finally* bring the windows up to code. Even that took a ton of nagging, with a lot of dropped communication. We’re thankful it was finally done.

Calling for that one new project after 4 years is not “called again and again for multiple projects over the years”, by the way. You did the tornado repairs. We didn’t call to hire for anything over 4 years . We called for the hail damage this year.

I have, however, called many times in the past four years to ask you to bring your window job up to code.

Very disappointed in this response.

*****

November 15, 2015 : My Fourth (Updated) Review of Iron River Construction.

And we have another update in this ongoing saga of the not-up-to-code window.

On November 4th, I was sitting at my desk when I heard a noise up front. Went to investigate, found that the entire sheet of film on the lower front window sash (the indoor one) had just fallen off, right onto the floor.

I emailed Mark at Iron River immediately, letting him know what happened, and asked if there was something wrong something wrong with that batch of film, for the outdoor one to bubble and peel up, and this one to just fall off. They had tried to blame tree sap (despite no trees around) for the failure of the outdoor film installation, I had NO idea what would explain the indoor one just falling off.

… it’s now November 15, a full week and a half later, and Iron River has yet to reply to my email. This is *beyond* ridiculous.

*****

Window2

Window film doesn’t do a lot of good when it’s sitting on the ground

*****

November 22, 2015 : My Fifth (Updated) Review of Iron River Construction.

Two and a half weeks after letting Iron River know that their interior window film installation (which was their way of “fixing” the fact that they didn’t order tempered glass windows in the first place) FELL OFF, Mark from Iron River finally replied with

“Marie, obviously nothing Iron River does seems to please you, we have gone out of our way to try and make things right and have received nothing other than negative reviews and grief for it. At this point, we are done trying to help as there are no open permits for the windows and they have passed inspection. Mark.”

So there you go. As long as their fix works long enough to pass an inspection that’s good enough for them. Never mind that the window is no longer up to code.

I have no words for how disgusted I am with this whole ordeal. It’s a freaking window. I don’t understand why it’s so hard to get it up to code.

Expecting a job that you paid for in full to be up to code and finished sooner than 4.5 years after the fact isn’t being overly picky.

To have the “guarantee” held hostage over a bad review – that only came after several YEARS of nagging them to bring it up to code – is extortion at best.

*****

… and that’s where we are now.

Personally, I’m amused at the fact that I’m the bad guy in all this, for giving a fair (but leaning negative) review after 4 YEARS of having to nag over a job that never had been done to code.

I love that I’m “high maintenance” or whatever, because I bothered them with it when their quick fix (film, rather than installing the tempered glass they were supposed to!) failed immediately.

So now, I get to deal with going after them through the legal system, like I haven’t invested enough time in chasing after this as it is. I’d always heard the stories of how contractors would screw the tornado victims over in our area, and we ALMOST ended up with such a con artist off the bat. I just never saw this coming with Iron River Construction. “Disappointed” doesn’t even come close to describing it.

I think back to the day of the tornado, when people hadn’t even begun to process what happened, as the “vultures” descended on the area. We were SO mad to see pickup trucks full of people with lawn signs advertising construction companies pull up into the extremely narrow intersections – trees and roofs just laying in the road as it was! – blocking all traffic just so they could get there and advertise first. That our tragedy was such a OPPORTUNITY to them, that they were mobilized immediately on that Sunday afternoon.

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I couldn’t wrap my head around how anyone could work to take advantage of natural disaster victims in that way, at the time… and I still can’t.

On the afternoon of May 22, 2011, North Minneapolis was devastated by a tornado. Twisted recounts the Porters’ first 11 months, post disaster. Rebuilding their house, working around the challenges presented by inadequate insurance coverage. Frustration at repeated bouts of incompetence and greed from their city officials. Dealing with issues such as loss of control, logistics, change, and over-stimulation, as an Aspergian woman.

Subjects covered include: Opportunistic “Vultures”, gawkers, new friendships, a bizarre gingerbread house, unique decisions made with the rebuild – including an internet-famous kitchen backsplash, “Tornado Claus”, contractor drama, water balloons, DIY design and work, music, sensory overload, and details on how to cook jambalaya for almost 300 people, in the parking lot of a funeral home… should you ever find yourself in the position to do so. Order your hard copy here, or digital edition here.

How We Made That: “Hobbit Hole” Cat Shelter Tutorial

In every aspect of our life, my husband and I are very “If you give a mouse a cookie”. A small idea snowballs really quickly, basically… “If we’re going to do X, we should probably go ahead and do Y… and Z… and OMG wouldn’t it be cool if ….?”

That’s basically my explanation for this tutorial, and the project that spawned it. A little background…

Back in 2011, the tornado smashed out one of our garage windows. It’s right by the ground, and totally useless – there’s a weirdly placed fireplace behind it, so no human is getting in or out of it – so it’s been pretty low on our priority list of things to fix. We’d see a cat or two go in and out of it, not a huge deal.

Then last year, my husband heard some noises in the wall when he was in the garage… and discovered a litter of kittens! We socialized them and their mama, and found homes for each of them. Shortly after that, Mama (now “Artemis”, per her new family!)’s sister also had a litter of kittens in there. We were able to hold the kittens once, before she hid them away from us. They all became feral, and lived in and around our garage/yard.

Flash forward to now. We have about 10 ferals living in our yard. They’ve all been named – Frodo, Sam, Merry, Pippin, Fili, Kili, Galadriel, Arwen, Celeborn, Beorn – and have their own Facebook fan page: The Feral fellowship. We’ve trapped, neutered, and released MOST of them so far, and are currently raising a small litter of kittens from them (Celebrian, Elladan, and Elrohir) in my husband’s office, and will soon adopt them out.

ANYWAY.

In the course of trapping, neutering, and releasing, we decided that we should clean up a part of the backyard, near the window they use, and put a small crate out there as a shelter. Maybe we’d plant some catnip. Actually, maybe that crate should be one of these homemade ones that are insulated? If we’re going to go to THAT trouble, why not build one from scratch? What if we make it look like a Hobbit hole? With cat grass growing on top!

… If we’re going to do THAT, maybe we should make a little “patio” of mulch around it – with a little border – so that we don’t have to use the lawnmower up against it. Actually, if we make that area a little bigger, we can surround the little apple tree so that we don’t have to mow around that. A little bigger yet, and we can do the same with the compost bins. Hell, at this point, that whole section of yard may as well be done in mulch, there’s no point bothering to mow the thin little strip that’ll be left… that’s a lot of mulch. Maybe we can sink some pots of catnip into the ground, to look like bushes in their little shire? And add some stepping stones! You know, we may as well add a little pond, so they have a constant source of drinking water…

… and here we are. Proud caretakers of a little feral “Shire”. Here is how we did it:

Materials

– 1 round egress Well with matching cover. Ours was about 36″ diameter, and 2′ deep.
– 6′ plank of solid composite decking, in brown. Don’t use the hollow kind!
– Large tube of construction adhesive. (We used Loctite PL 3X Premium Construction Adhesive)
– Outdoor latex paints, tinted yellow and green
– “Cedar” coloured silicone caulking
– Pipe hanging strap
– Screws, bolts, etc
– Soil
– Cat grass seed

How We Did it

Being careful to line up / center everything, I used a sharpie and a couple of plates to trace circles onto the egress cover for the openings

Then, I drew a rough guide for the “brickwork” around each. I wanted to get an idea of how many bricks I’d need, and what sizes. I ended up needing 24 1.5″ x 2″ bricks for the main door, and 40 1″ x 1.5″ smaller bricks for the two windows.

I had my husband cut the bricks from the plank of decking, using his table saw. He used his jigsaw to cut the holes out of the egress cover. He was careful to get the door out in one solid piece, as I’d be using it.

As he presented me his perfectly cut bricks, he informed me:

“You know what you need to put between each of the brick pieces? MORDOR. I mean MORTAR.”

… what a dork 🙂

Once the holes were all cut, I slathered the whole front facade with a thick layer of construction adhesive. I used a painting sponge to spread and texture it, kind of smacking and pulling it upwards to resemble stucco.

As I finished spreading and texturing around a window, I carefully placed the appropriate sized “bricks” into place around the edge, pushing in to secure in the adhesive.

Once the whole thing was coated, textured, and had all of the bricks placed, I let it dry (cure?) for a couple days.

In the meantime, I spread the door piece with more adhesive, using the sponge and an old paintbrush to streak it into more of a “wooden door” texture.

Once everything was dried/cured, I painted the “stucco” yellow, and the door green.


As I was being artsy in the comfort of our house, my husband slaved out in the yard to clean debris, strip the sod, and level the whole thing. Getting the ground level where the Hobbit Whole would go was important, so it would be stable and fit snuggly against the garage.

I piped the cedar toned silicone caulking around the edge of the windows/door, and in between each brick.

Once it was all piped, I used a wet finger to smooth it all down

Once everything was all cured and dried, it was time to assemble it all.

First, Porter fit the egress cover to the egress well, and marked spots on the egress cover to indicate where the holes on the well would line up. He then drilled these holes, so he could bolt the cover on.

Next, with the cover on to hold the well into the correct curve, he attached two 2×4 planks across what would become the bottom of the structure, to hold it all into place. (Not pictured)

Next, he attached the door. He took the facade off the well to do this. Due to the ridges going on in the back of the facade / door, he had to get creative. He ended up … ah, let me just quote him…

“I used pipe hanging strap (like this ), which is easily bendable and has holes for screwing into things. I used one piece near the center of the door and one strap near the top. It’s just bolted on, I drilled holes in the support strips to mount it.”

He then replaced the facade onto the well, and attached it with 3 or 4 small bolts.
Finally! Time to install the Hobbit Hole into our little feral shire!

We had already completely landscaped the “Shire” by this point – covered the entire area in landscape fabric, installed a small pond, dug holes and sunk 5 little pots for catnip “shrubs”, spread mulch, and laid stepping stones.

We had left a small spot of unmulched area on the fabric, right about where the Hobbit hole would be going. We placed it where we wanted it, then packed some more mulch down into it as a bit of a floor, and to hide the beams underneath.

Then, we mounded a bunch of dirt over it. You really want to pack it in well, and it’ll want to slide a bit. Take your time!

Then, plant a ton of cat grass seeds. I think we ended up using 8 packets, over a few weeks, just getting ridiculous with it. They tend to grow in small clumps, rather than an all-over sod like consistency.

Didn’t manage to get a close up of the soil covered structure, so here’s a view of the whole Feral Shire..


… and then we waited, keeping the soil moist while we let nature take its course. MADDENING!

Once the grass started sprouting, the ferals started to indicate their approval 🙂

Pippin got up there and caused a bit of sliding, which we later repaired:

I think Frodo may have been a little jealous…

… and then Sam wanted to know what was up…

.. and the Kili decided to come hang out with them all…

A patched dirt slide, a few more seeds and a couple weeks later, and voila … one proper feral shelter Hobbit Hole! It was a lot of work, but totally worth it!


It’s been nice to see them hang out in the back yard, fairly carefree. They get along well, have access to fresh water and food, and seem to know thay’re safe here, and free to be cats:




(Bonus: There’s video of Arwen enjoying that catnip.. SO cute! Click here to view it on their Facebook page!)

Be sure to follow The Feral Fellowship on Facebook for tons of cat photos and updates on their lives out back!

By the way, if you’re here because you’re a big fan of Middle Earth… I highly recommend checking out Tol-Con, a Middle Earth themed fan convention coming to Minneapolis in 2016. My husband and I are both involved with it, along with a great team – it’s a fan run convention, and featured themed BANQUETS as part of the ticket! Here is the Facebook page for it. Won’t you join us on our adventure?

Caturday: Tolkien Edition

So, we’re just a few days away from OneRing.Net‘s “One Last Party – There and Back Again”, and our little fellowship that’s going is SO excited. Adventure!

It’s been a LONG time since I’ve posted a Caturday blog, so… let’s do one, and make it Tolkien themed.

First, meet my baby Gandalf.

She was born in our garage, to a feral cat that had gotten in and decided to call it home. My husband heard a noise one day when he was working out there, and was surprised to see kittens in a wall. We spent the next month and a half or so socializing them (kitten snuggles!), and found homes for all of them – Mama included… but I HAD to keep Gandalf. From the first time I held her, she snuggled into my chest and just passed out. Every time.

The cloak (not shown here), hat, and staff were my evil plan to convince hubby to let me keep her. It worked.

Recently, we introduced her to a couple of Funko! figurines.. and the pics were too cute to NOT share. Enjoy!

Gandalf was just annoyed by Sauron..



… but took more of an interest when Symmie got involved…


Gandalf wanted to eat Smaug, though.


As a bonus, a couple crappy cell phone photos of Panthro deciding to eat both Sauron AND Smaug..