The Timmycation 2025

Our Big Trip With Tim: 9 Nights, 4 Stops, and a Lot of Heart

This summer, we decided to do something we hadn’t done in years: take our son Tim on a real vacation—not just a trip to visit grandparents, but a getaway that included a lake retreat, a family reunion, and a long drive across the Prairies.

Tim is 30 now. He’s lived in a group home for almost four years. While we still see him regularly, it’s been a while since we’ve done a longer trip together. Most of our past trips with him have been 4 or 5 nights at most. This one would be nine.

We live in Calgary and were heading to Saskatchewan, where we have both family and familiar vacation spots. We knew it would take some planning, but we were up for it.

---

Packing and Prep: The Not-So-Glamorous but Necessary Stuff

Because Tim is incontinent at night, we came well prepared. We packed:

• Vinyl zippered mattress covers (two queen, two double)

• Extra sheets and lots of bed pads

• Pull-ups for nighttime

• Labeled daily medications, plus his medicine spoon

• Clothes, socks, and shoes for his “thumpy” gait

• And everything else... except a toothbrush. So he used mine for a day. Nobody died.

Our bedding setup goes like this: vinyl zippered mattress cover → sheet → bed pads. Most mornings, we just removed the pads. Sometimes, we had to change the sheet too. We did a laundromat stop halfway through. The system worked—and no mattresses were harmed in the making of this vacation.

---

Leg One: Calgary to Saskatoon

The first stretch—6.5 hours on paper, 8 hours in reality—went well. Tim didn’t have a single accident in the van (a major win!). We’ve now memorized all the best bathrooms between Calgary and Saskatoon. The gender-neutral or single-room ones are our go-tos.

Once in Saskatoon, we checked into a hotel, remade the bed, and went out for dinner. The next morning, while my husband (our heroic driver) slept in, Tim and I went for a hotel breakfast and swim. He loves the pool and even floated proudly for a while.

Later, we had a big family brunch. Tim isn’t always big on visiting, but he loves to eat—so this worked in everyone’s favour.

---

Leg Two: Off to the Lake

After Saskatoon, we headed to Emma Lake, one of our favourite spots. The drive was about three hours (two if you're not us), with a grocery pickup in Prince Albert that I’d pre-ordered online from Calgary—highly recommend!

The hotel at the lake had Wi-Fi, which was a pleasant surprise. While Tim tolerated the cartoon channel, he much preferred watching Disney movies on his iPad or our phones.

Our days were filled with:

• Walks, drives, and canoe rides

• Picnics, ice cream, chips and dip - and Diet Pepsi (for Tim)

• Beach campfires and simple, slow days

One day, we even took Tim to a photography talk at a local gallery. With candy in hand and streaming video on my phone, he was a model audience member. We were, honestly, a little shocked—in the best way.

We also visited my sister (who has special needs) and reconnected with my lifelong friends, The Girls from PA. It was the kind of slow, full week we needed.

Leg Three: Humboldt and Family Time

After six nights at the lake, we drove to Humboldt to visit Tim’s grandparents. We stayed in an Airbnb with a super-deep queen mattress. Thank goodness for our backup vinyl covers. I forgot to pack a queen sheet, but Tim’s grandma had us covered—literally.

Tim loved the giant bed (probably the biggest he’s ever had). We saw the whole Schweighardt family—people came from Regina and Saskatoon, even just for the day. Their love and effort mean so much to all of us.

---

Heading Home: A Rainy Day and a Dry Car

We got a late start leaving Humboldt. The Airbnb had a long list of cleaning requests, despite charging a cleaning fee. We spent an hour scrubbing floors, taking out garbage, and re-dressing the bed with their linens. Not ideal, especially with a long day ahead.

The drive back to Calgary is about eight hours, but it took us ten with stops. We limit Tim’s drinks in the car to prevent accidents, and for the first time ever, he stayed completely dry the whole trip.

We stopped in Drumheller for a picnic supper, thanks to a care package from Tim’s grandparents, complete with June berries—also known as Saskatoons!

---

Reflections: Why It Was All Worth It

This trip took effort. We packed and unpacked the car more times than I can count. We remade hotel beds, hunted down bathrooms, and juggled medication schedules. But it was so worth it.

Tim swam, hiked, canoed, picnicked, watched less TV than usual, and spent time with people who love him. He didn’t pee in the van. He floated in the pool. He listened quietly at a gallery talk.

He did so well and seemed really happy, as happy as we've seen him.

And we made memories as a family—something we’ll hold onto long after the laundry’s done.

Autism Canada: Words Matter

Posting this document I found online (autsimcanada.org) regarding how to regard language used when referring to neurodiversity. I'm sure at the time of publishing this, there are already some changes. There is a lot of quibbling about this on social media.Words Matter - Autism Canada I think this language is respectful and inclusive. 

Defending RFK? Sort of.....

 Recently, RFK has been on the war path to find a reason to what is causing autism.  "Kennedy said many autistic children were “fully functional” and “regressed … into autism when they were 2 years old. And these are kids who will never pay taxes, they’ll never hold a job, they’ll never play baseball, they’ll never write a poem, they’ll never go out on a date. Many of them will never use a toilet unassisted.”
He also said, “Most cases now are severe. Twenty-five percent of the kids who are diagnosed with autism are nonverbal, non-toilet-trained, and have other stereotypical features." (PBS News, Apr. 23, 2025)

I immediately recognised my son in these statements. 27% of individuals with autism have what is now termed Level 3 autism, or profound autism. He was not referring to the autistic people who require lower levels of support. Of course, they need help as well, but not to the extend level 3 individuals do. In an earlier post, I called it "intense" autism. The spectrumisation (I know, not a real world) of autism, combined with the ability to diagnose what was once ignored, is what has caused the rates to rise so dramatically. This is completely missed in the RFK speech. He points to environmental triggers, and most of us know where that is going as he rushes to find the cause by September, 2025. 

So while I am skeptical of RFK and his unhinged thoughts and remarks that ignore most of the autism world, I am grateful that he seems to have opened up a discussion and even a venue for caregivers and parents of level 3 autistic people to share with each other. The social media in this area has blown up. It is embarrassing and difficult to share hard experiences, and people don't want to hear or see them. But we, in the level 3, intense, profound world, find it helpful that people are now talking about it!

So what are levels in autism? According to Autism Canada, these are the levels. Full disclosure, I have not heard the levels described clinically until very recently. 

From Autism Canada, these are the levels. RFK was referring to level 3. 

TABLE 2  SEVERITY LEVELS FOR AUTISM SPECTRUM DISORDER

Level 3: “Requiring very substantial support”

Social Communication:

Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning, very limited initiation of social interactions, and minimal response to social overtures from others. For example, a person with few words of intelligible speech who rarely initiates interaction and, when he or she does, makes unusual approaches to meet needs only and responds to only very direct social approaches.

​Restricted, Repetitive Behaviours:

Inflexibility of behavior, extreme difficulty coping with change, or other restricted/repetitive behaviors markedly interfere with functioning in all spheres. Great distress/difficulty changing focus or action.

​Level 2: “Requiring substantial support”

Social Communication:

Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions; and reduced or  abnormal responses to social overtures from others. For example, a person who speaks simple sentences, whose interaction is limited  to narrow special interests, and who has markedly odd nonverbal communication.

​Restricted, Repetitive Behaviours:

Inflexibility of behavior, difficulty coping with change, or other restricted/repetitive behaviors appear frequently enough to be obvious to the casual observer and interfere with functioning in  a variety of contexts. Distress and/or difficulty changing focus or action.

​Level 1: “Requiring support”

 Social Communication:

Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful response to social overtures of others. May appear to have decreased interest in social interactions. For example, a person who is able to speak in full sentences and engages in communication but whose to-and-fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful.

​Restricted, Repetitive Behaviours:

Inflexibility of behavior causes significant interference with functioning in one or more contexts. Difficulty switching between activities. Problems of organization and planning hamper independence.

Published article on Aggression in Autism

Aggression in Autism from Autism Science and Research News, 2021

Autism Rages- 10 Years Later

                              Tim at 20                                                      Tim at 30

Ten Years Later…

Tim was 15 when I started this blog. Back then, I just needed a place to write about his rages—somewhere to process everything we were going through. I don’t know if anyone ever read those early posts, but writing them helped me breathe.

Now, Tim is 30.

At 15, his face often bore the marks of his own hands—scratches, hits from episodes we couldn’t predict or understand. His rages were frequent and intense, and we lived on edge. Redirecting him was constant. He seemed to be seeking something we couldn’t identify. We didn’t know it at the time, but much of his behavior worsened when he was on Risperdal. It affected him profoundly, both emotionally and physically. One of the side effects was tardive dyskinesia, which caused him to spasm. It was terrible, and he only stayed on this drug for about 2 months, because it was obviously making a negative reaction for him. 

That period was terrifying.

Eventually, we were referred to a psychiatric clinic for teens and adults with special needs. That referral changed our lives. We still see the same psychiatrist 3–4 times a year. She helps us manage his medications, understand what’s going on, and most importantly, helps us help Tim live the best life he can.

Where Things Are Now

These days, Tim’s rages are rare and mostly occur at his day program, particularly in the mornings. There’s a theory that the pressure shifts during Calgary’s chinooks might trigger headaches or discomfort. It’s possible. At his group home, though, these episodes are almost nonexistent.

Recently, I came across a TikTok creator who described rages in autistic individuals as similar to seizures—sudden bursts of electrical activity the brain can’t control. That analogy really resonated with me. I’m not sure if there’s scientific evidence behind it, but it’s something worth exploring. Tim has been on an anti-seizure medication since his teens, which coincides with when the rages first became overwhelming.

The Group Home

Yes, group home. Tim moved into one when he was 27. I’ll be honest: it was one of the scariest decisions we’ve ever made. The “what ifs” were endless. What if he didn’t understand? What if he didn’t like it?

But the timing felt right. My husband and I were in our late 50s, mentally and physically exhausted from years of caregiving. We barely knew if we were coming or going. I often wondered whether working full-time all those years made it harder for Tim—but that’s a road I try not to go down.

His group home is run by an experienced agency and came about through a connection with a former classmate of Tim’s. They were starting a new home in Calgary, and Tim was chosen as a roommate. Both young men have what I refer to as “intense” autism. I know that’s not a clinical term, and it may not sit well with everyone in the autism community, but it describes what we’ve lived. Tim’s home now includes three men, all with similar support needs.

He’s been there for three and a half years.

The Pros

• We have time again. Even though we visit up to four times a week, we now have the space to do things for ourselves—read, rest, recover.

• Tim actually likes it. He waves us off when it’s time for us to leave. He enjoys the independence of his own space.

• He’s well-liked. Most of his workers genuinely enjoy him and understand his rhythms.

• His personal care has improved. His bathroom routine has improved to the point he never wears protective underwear. 

The Cons

• Care isn’t always up to our standards. His new mattress was ruined early on because no one put a cover on it. His toenails and fingernails go untrimmed unless we remind them—something crucial, because during rages, he may scratch himself.

• The commute. The home is 25 minutes away, which means each visit takes at least two hours.

• Inconsistent staff. Holidays and weekends bring casual workers who don’t know the residents well, which can lead to avoidable incidents. We try to visit more on those days to provide stability.

Understanding Rage

I still try to understand what triggers Tim’s rages. Here’s a summary from OpenAI that captures what might be going on. The bolded points are the ones I suspect apply to Tim:

• Sensory Overload: He may experience heightened sensitivity to sound, light, or other stimuli, which can overwhelm him and trigger distress.

• Emotional Dysregulation: Intense emotional reactions are difficult to control, especially when communication is a challenge.

• Communication Difficulties: Tim often struggles to express what he needs or feels, and that frustration can build into a meltdown.

• Changes in Routine: Even small disruptions can feel catastrophic for him.

• Underlying Medical Conditions: Things like headaches, GI issues, or even seizures might be contributing to his outbursts.

• Stress & Anxiety: Life can be overwhelming for him in ways we’ll never fully understand.

• Catastrophizing: Tim may dwell on imagined worst-case scenarios, adding to his distress.

---

I don’t have all the answers. But I have love, patience, and a fierce desire to give Tim the best life possible. Writing helps me process everything, even if no one reads it.

Thanks for being here, even just in spirit.

— Still learning, still loving.

A couple of months later

Since my last post, Tim has been back and forth with the raging.  One of the things that is helping is the clinic we were referred to.  With the help of a psychiatrist, and psychologist, these professionals are looking at Tim's day, and seeing how we can design it to take some of the stressors away.  There is definitely an agitation at times that is hard to get around, which eventually leads to the rages.  Last week, he had three.  One happened at a loved caregivers house, one happened at school, and one happened at home.

What I found most interesting is talking to the psychologist.  We filled out a 14 page profile.  Well, maybe it was 12, but it was in depth.  We filled out a similar one for the respite home a couple of years ago, which they have obviously referred to as they do similar things to us to try and diffuse the situation.  In filling out this report, I am reminded that Tim likes to help lift things, so I am having him being my laundry lifter more than ever. I am reminded that he loves tactile activities like bubbles and bubble bath.  So I fill the sink with dishes I have to soak anyway, and let him "help".  It actually does help, and he's getting a fix for something he needs.  We lamented that he didn't have a trampoline because of our small condo, and she wondered if a rebounder might help.  So, thanks to Amazon, a rebounder sits in our piano room, in front of the TV.  He likes to sit on it, and he gets some input that wasn't there the previous week.  Maybe these little things help.  I like to think so.  The clinic is going to get an Occupational therapist involved, as well as the day program.  We hope that this type of comprehensive care for Tim will help him cope.  She also suggested because one anti-depressant didn't work, didn't mean that anti-depressants won't work for him.  I had kind of thought since the one we used in the summer had such adverse effects, that they all would. So it looks like we may go down that path.

Mom and dad are coping.  Our breaks from coping with Tim come from working, and the odd date night out. Other kids Tim's age are out having fun, and we have to be his fun.  That is a hard thing to do on a constant basis.  No wonder he rages.  Maybe we just aren't that fun? 

Rage free day, followed by a ragy middle of the night.

I was thrilled as we put Tim to bed last night.  He had made it through all the routines of the day- all the way to bed time.  He went to bed around 11:00, as did I.  At 12:25 the rumbling started.  I went in to see if he needed anything, bathroom, water, fan turned on, the usuals.  He motioned to me to get out. That's never good.  AT least he knows what he wants.  "I need to express this rage and you better not be in here while I'm doing it."  It's heartbreaking.  You know he's really frustrated, in pain, and can hear the thuds of him hitting his face.  10 times in a row.  I can hear that he's hitting bone, possibly jaw bone or forehead.  He went to slapping his face, but he's stopped that.  I'm glad he doesn't slap as that used to leave nasty bruises.  He opens the skin on his hands while handwringing, and then pounds the door, leaving a bloody mess.  The damage is minimal. I've read of broken windows and known children who kick holes in drywall.  We have had problems with neighbours, but not our next door ones, who must hear it. We live in an attached townhouse condo.  You feel the bangs on the door through the whole house, and even when I have earplugs and a pillow over my head, it is still VERY loud.  Today he has camp.  I let him sleep late, and will take him myself to where they are headed. I hope he has a good day.  Just yesterday his camp instructor said he loved riding Spongebob the horse and had a wonderful time, laughing and smiling the whole day.  Today they go swimming at a leisure centre, which he always loves as well.  Wish us luck.