Returning to School?

I have a saying that I use in my coaching practice: disabled and neurodivergent folks are the canaries in our coal mines. Typically, miners took canaries into the mines with them to let them know when gas had built up to high and the oxygen was running out. If they left when the canaries stopped singing, then everyone got out alive.

Like canaries in mines of old, meeting our needs as disabled and neurodivergent individuals in turn ensures that everyone else is safe and has their needs met. As we consider reopening schools, the concerns I have about my disabled, autistic daughter’s needs being met at school are not only for her benefit, but also for the benefit of all of her abled and disabled, neurotypical and neurodivergent classmates as well as the staff at her school. So here are a few questions I think we need to answer collectively before we go back to school.

No Child Left Behind

To begin with, some students will be able to go back to school and others will not. Perhaps because of disabilities they have themselves or perhaps because they live with folks who are high risk. How will these students be accommodated? How will we ensure their education continues to be supported and that no child is left behind? And how will we help students catch up from work when each family had different abilities to support education within their home context during isolation?

Bring Back EA’s

Many students rely on Educational Assistants for everything from scribing to impulse control to toileting, and many students and teachers depend on them for classroom management and academic assistance, regardless of ability. Still, many jurisdictions have spent the last several years laying off EA’s. What actions will school boards take to ensure that all students requiring educational assistants have access to those EA’s, and that those with compromised immune systems and impulse control issues have 1:1 supports to keep themselves and those around them safe in the classroom?

Lower Classroom Numbers

As classroom numbers have gone up in jurisdictions around the continent, spacing between desks has become increasingly tight, to the point where wheelchairs simply cannot maneuver around classrooms. What began as a need for access for my daughter is now a safety issue for all students and their families. How will school boards reduce class sizes to ensure adequate separation between students? And how will they do so in ways that do more to INCLUDE vs EXCLUDE students with disabilities?

Integrate Mental Health Supports for All

Mental health issues have taken a huge toll on students over the past three months – especially those who have felt targeted or expendable because of their race, class or disabilities. A large number of students have also lost loved ones – including caregivers – to COVID. Yet mental health services – including sensory supports, emotional regulation work and trauma-informed practices – have been sorely lacking in most schools. How will we use this as an opportunity to expand on, revamp and reframe our mental health services to be inclusive and accessible to all students across the needs and abilities spectrum? How will we work to rebuild connections and reinvigorate our students with the agency they need to process the trauma they have individually and collectively been through? And how will we bridge the gaps between students whose experiences were mostly healthy with those who have suffered greatly?

As you can see, these concerns are not limited to our disabled and neurodiverse students. And their solutions will not simply benefit the few. As with all areas of universal design: when all are accommodated, all benefit.

The question is whether we’ll notice if the canaries we’re carrying stop singing their song.

Unmasking

There is a concept within the Autistic Community called ‘masking’, but it applies to many people across many different diversity axes. That’s because masking is basically the work we do to try to blend in with those around us – to try to pretend that we are someone that we are not – less autistic, less queer, less disabled, less ADHD … less us. In particular, these ideas are often introduced or reinforced with behavioural methods such as ABA/IBI or conversion therapy.

Although this way of living may help in some situations, some of the time, to allow us to feel less weird or different or to make other people less uncomfortable around us, they are extremely problematic for our mental health because they rob us of our sense of clear identity. Just like it costs an actor/actress emotional and physical energy to bring to life a character on the screen or stage, so, too the energy costs of trying to pretend we are not who we are is high.

The problem is, if you’ve spent your whole life doing this, it’s not enough to simply ‘try harder’ to ‘change your behaviour’ and mask less. In essence at that point you are trying to replace one behavioural goal with another, without ever getting to the root of who you are or gaining the freedom that this unmasking is supposed to deliver.

So what’s the alternative?

I believe the alternative is found in my Values-Based Integration Process. Here’s the basics of how that works.

We start by identifying what our values are.

This diagram shows the process I take clients through. While you may find it possible to use on your own, I would encourage you that this was not designed as a ‘do-it-yourself’ process. When we have masked for years or decades we often need a compassionate guide to help walk us through the process so that we can give ourselves the permission we need to get to true honesty with ourselves.

 

See the description for the full alt text

Then, begin to identify the messages (conscious and subconscious) that currently dictate your masking

This is a process that should be done with a trained coach or therapist. It can be overwhelming to look at these messages on our own, and we can very easily begin to spiral or trigger during this process. Please, don’t try this at home!

Having identified the messages carefully, we then use the values to dissect those messages

We take each value individually and ask that value what it thinks of the message. Usually our values have quite scathing things to say about them. Often there is grief and pain that we need to process as we consider what each value has to say. This is absolutely critical to the process, and cannot be rushed through.

Next, we ask the values what they think we should do in these situations

It’s not enough to simply say “I won’t do that anymore”. We actually need to replace that old message with a new, unique-to-us values-based approach to living life. To get to a clear new message, we first have to listen to each value as they tell us how they think we should respond.

We can construct a new message

Using all that we have heard from our values, we have the opportunity to construct a new message, this one rooted entirely in how WE were uniquely made to live and move and be.

Finally, we ask our values how we could put this into practice.

We try to find a single, practical way of grounding ourselves in this new way of living. Clients are often afraid that this will feel like a lot of work or effort, but are surprised by how easy it now feels. The ease comes from having worked through this process in its entirety, and with the ease, a freedom to be able to hide less behind the mask and live more fully as the people we were always meant to be.


Of course, that only takes care of one message, and all of us carry around dozens – even hundreds – of (often contradictory) messages. The process of unmasking is therefore just that – a process, that takes weeks or months of coaching to get through.

That can feel daunting to begin, but the freedom? It’s like nothing I had ever experienced before!

If you would like more information, or to set up a coaching appointment, please contact me here.

On Waiting

So many things have been put on hold recently, haven’t they? Birthday parties, potlucks, gatherings of any sort have joined ranks with graduation celebrations, sports and even shopping.

It’s not something to celebrate, really, but I’ve been ‘waiting’ for a long time now, and I think the following 5 things about waiting are pretty universally true:

Should We Wait or Should We Grieve?

It’s important to distinguish between things that we’re waiting for that have the possibility of happening and things that we need to grieve because they simply won’t or can’t happen. That’s because, while the perceived emotional cost of grieving may seem higher at the outside, waiting indefinitely for something that isn’t going to happen can take a huge toll on us emotionally over the long haul.

Background Stress and Intensity

For things that will happen – but for which the timing is long and/or uncertain – the emotional cost of waiting is found both in a background stress as well as in more pronounced waves of intensity. Both are normal.

Greet the Waves

As with all emotions, our job is to Greet the Waves. Getting honest about the emotions as they come is our best response: see them, acknowledge them, feel them, and then let them go, knowing that the waves will come back time and again but that we will survive because we are deeply grounded on the shore.

We Can Only Be Responsible for Ourselves

We get in trouble only when (or to the extent) that we try to control the situation. As much as I struggle with this one, I have learned that control is based in fear – it ratchets up the intensity of my emotions and rarely (if ever) results in an improved timeline or quality of response. Sometimes it can even royally backfire on me! Instead, our goal should be to ground ourselves deeply in our values while we take the actions we need to take, and leave the rest to whoever else is responsible. 

Celebrate the Baby Steps

Make sure you celebrate the baby steps and little wins. If you’re a frequent follower of my page, you’ll know that I routinely post pictures of the little tiny wins related to our new house: the hole being dug, the foundation bases going in, a back wall going up – they each get a celebration. Waiting for really big things – be them a house or a baby or a diagnosis or a power wheelchair – can take time, and it’s hard to stay grounded over the long haul, but these mini celebrations have proven critical to maintaining that process.
So, if you’re waiting this morning …
If you’ve BEEN waiting for weeks and weeks or months and months or even years and years of mornings …
Remember: you’re not alone.

And feel free to get in touch – I’m always happy to ride out a long wait together.

Hope

Hope is a tricky thing.

Sometimes it feels like hope will just lead to disappointment – like not only is there ‘no point’ but there is almost an ‘anti-point’ – like it will be net negative to hope for something.

When I first got sick people really wanted me to ‘hope’ that I would get better soon. Hoping that this disability was going to get better in a few days or a few weeks or even a few months led to all sorts of disappointment, and putting off a lot of the changes that we needed to make to be able to cope with our new normal.

But sometimes hope is what propels us – what gives us the energy and the motivation and the capacity to try.

 

A year ago, we decided to start hoping for a space that was accessible, for a wheelchair that would allow me to function, and for access to community. At the time those things felt almost as impossible as recovering from this disability, but step by tiny little baby step we have seen change, and with it, renewed capacity for me to function and thrive.

 

We now have the power wheelchair. We’ve found an accessible van that will soon be ours (current pandemics aside), and today we did the first ‘roll through’ of our newly framed #accessiblehouse.

 

Hope is a tricky thing – but that doesn’t mean we shouldn’t hope.

 

P.S. as usual, a huge shout out to Community Builders for their amazing work bringing this hope into reality – even in the midst of everything else going on!

Homeschool Coaching Intro: Transcript of Facebook Livestream

Today – in the midst of bad news all over the place, when it comes to how we continue to educate our kids in the middle of trying to work from home during a pandemic, I have some good news!!

First – it doesn’t have to take six hours of dedicated time a day to teach your children. Homeschoolers – during regular, non-pandemic times – usually assume 1-2 hours for elementary school a day, 2-3 hours for middle school (only some of which require parental involvement) and 3-4 hours for high school (which should only take a small portion of parental engagement), to do EVERYTHING school related. That’s because it’s a different context.

Second – this is homeschooling the pandemic edition. All of us – including our kids – are already on a steep learning curve about what it means to be a neighbor, how we care for one another, and how we deal with stress and uncertainty. These are important life lessons. They matter. It’s ok to prioritize them!

Third – in the middle of all of this there is an opportunity for your kids to learn more about the things that fascinate them, to have time to develop new skills they’ve always been too busy to explore, and to learn life skills that were never going to come from school. Your goal isn’t to recreate the school curriculum, but to keep your child engaged with learning and discovering themselves and the world around them.

Sound good so far?

Great. 

Now, to get there, we have to understand the idea of emotional self-regulation – at least a bit! That’s because CALM brains are brains that are ready to LEARN and emotional self-regulation is all about understanding what calm is and how we get there.

When I’m coaching folks, this is usually an entire session – or three – to evaluate your child and family dynamics and figure out child-specific self-regulation strategies, so if you feel like I’m zipping through, I apologize, but for today I just want to introduce the idea that each of us can operate out of one of four emotional ‘zones’: the blue zone, where we’re tired, sick, lethargic, etc.; the green zone, where we’re calm, engaged, and able to focus; the yellow zone, where we’re excited, nervous, uncertain, or hyper; and the red zone, where we’re out of control, melting down or otherwise feeling like we’ve ‘lost it’.

The good news is, most of our children have been introduced to these zones at school already – they might even have experience ‘checking in’ with their zones or knowing what activities help them move back to the green zone. This is well worth a conversation if it’s not already part of your toolkit. If you need more assistance with this, let me know – perhaps another Facebook Live session will be needed just for this!

However, for today, I have four ideas for helping us get to calm:

Idea #1 is Predictable Structure 

Now, I’ve seen all the memes this week … the very calm, ordered, structured ones, and the ones where all of that has been scribbled out and ‘kids run wild’ penciled in overtop. And I get that there are going to be days. But structure can be really helpful for our mental health and our success when it comes to balancing all of the competing priorities we’re being asked to accomplish right now, so here’s what I’m going to suggest: a simplified, personalized plan.

I’m going to suggest that you start by thinking about what things you want to make sure happen every day. Maybe time outside, time doing chores around the house, time doing activities and time in front of screens. All of these can be valuable to getting through our days. 

Then figure out how much of the day (ish) that you want to spend on these things. That MIGHT be enough for you and your family. If so, that’s okay. 

If you’re looking for more than that, consider blocking the day into chunks that are a bit more predictable – maybe around the toddler’s nap schedule, a work call you know happens every morning at 9:00 am or some other element of life you are trying to work around. Again, don’t feel obligated to schedule it to the minute – that will be unrealistic for everyone – but having a general order of operations can be really helpful for everyone involved.

Kids and adults alike may benefit from translating these into visual schedules, but remember, it’s ok if you don’t keep them perfectly. The point of this structure is to help EVERYONE in the family feel like they have some agency and autonomy over what’s happening right now, and that they can predict what WILL happen in the coming hours, if not the foreseeable future.

If you’ve got kids with disabilities – especially those on the autism spectrum or those with developmental delays – I would STRONGLY recommend that you not only create these visual schedules, but that you talk through the plan for the day regularly: start talking about the plan for tomorrow as part of your bedtime routine. Talk about the plan for the day in the morning as you’re getting up and ready for the day. Refer back to the plan as you start each part: “we’re going to go out for a walk and look for worms and then we’re going to come back for our snack.” This will add a level of calm for a lot of these kids, and remember, calm is what we need to be able to learn.

Idea #2 is Movement

And this movement is with a big emphasis on movement OUTSIDE whenever possible. Making time to move every day is so critical to our brain’s sense of calm. Whether it’s swinging from the swing in the backyard, playing hopscotch on the driveway, going for a walk, riding your bike or having a dance competition with friends, movement helps our brains and bodies process stress and helps our brains calm down so that they can learn. However much movement might be part of your day to day life, for most of us and our children we are going to benefit from MORE movement right now.

Predictable structure, movement, now idea #3 for getting to calm:

Idea #3 is Connection

Make learning time connecting time, regardless of age. So many of us are used to sending our children elsewhere – disconnecting – for their learning time. But connection with our primary caregivers is part of what makes us feel safe and calm and ready to learn, SO, try to find ways to be present and connected with your children when you are asking them to learn – especially when you’re asking them to learn new, hard things (like how to wash dishes or put their laundry in the hamper!) 😉 

Finally, Idea #4 for helping to get to calm:

Idea #4 is Purpose and Achievement

Purpose and achievement are real, innate desires for all of us as humans. We need to feel like we’re doing something meaningful, and our experiences of real, meaningful success drive us forward to try again, and also creates healthy things like self esteem, confidence and resilience. 

What that means is that it’s important for us to focus on meaningful learning opportunities at this time, and not get bogged down in ‘busywork’ like worksheets. For example, if we want to help our kids work on their writing abilities, why not choose to write a letter to Grandma and her friends at their nursing home, or practice our fractions by doubling our cookie dough recipe?

So, if we want to learn, we have to get calm, and to do that we might use things like predictable structure, movement, connection, and purpose and achievement.

That’s HOW we learn, and for some of us THAT will need to be the focus – and possibly, that will be enough! If that’s you, I will not be offended in the slightest if you sign off now – I hope that it was helpful and encouraging.

For those of you desperate to know about how and what to TEACH your kids, this is for you.

I don’t think right now is the time for long curriculum discussions, or twelve-week plans. But I am a big fan of building off of the things our kids are interested in and passionate about.

So think for a minute about each of your kids. What are they most passionate about right now? What’s holding their interest? Maybe it’s animals. Maybe Lego. Maybe drawing. What are your kids really into?

Ok, now, using those interests what we’re going to do is think about the three basic elements of education.

  • Curiosity
  • Connections
  • Communication

Yeah, I know that wasn’t what you expected I would say, was it??

You thought I’d say the three R’s: reading, writing and ‘rithmetic, perhaps, and it’s quite possible that all of those will get involved at some stage, but we’re not at school right now – that’s the whole point. We don’t have education degrees (most of us). We are trying to do this while juggling work and life and a global pandemic, and that means we need to think about learning as something we can do in the midst of whatever else we’re doing. So, if we bring the lens back to these three C’s – curiosity, connections and communication – we can really successfully move out of a school-based, worksheet-based model and make it possible to learn in the midst of our real, everyday lives.

So, let’s talk this through on a few different age levels.

Preschoolers

For the preschoolers out there (age wise or developmentally): curiosity is driven by what is right in front of them, and what holds their interest. They need to be able to touch it and taste it and engage with it! But they are also at the poll parrot stage. They learn and get curious by copying. Which requires connection. So if they’re passionate about trains you might take a few minutes to get down on the floor with them and ask them questions about what the trains are doing, or try building something a little different with the trains or have a conversation about what is working or not working with the trains. You probably already do that. But THEN you can introduce a little bit of letters or a little bit of numbers using the trains. You might say “this is Thomas the train… T… T… T… Thomas. Thomas’s name starts with T! Can you make a T sound?” Or “1, 2, 3, 4, 5! I have 5 trains. How many trains do you have?” 

You’ve started with a thing your child is already curious about. You’ve made connections between yourself and your child, but also between your child’s current interest and the bigger world. And you’ve communicated with your child about that interest. This doesn’t need to take long – it’s five minutes in the middle of “train time” not an hour long lesson – but you can then go back and build on it at your next coffee break.

Elementary School: Grades 1 – 4

Ok, now for elementary school kids, grades 1-4. These guys are all about the first four W’s. They want to know the who, what, where, when. (Sometimes why and how come in at this age, but don’t worry too much if they don’t).

Let’s say your child is really interested in pandas. You might find a nature show about pandas for them to watch – or a live stream of pandas at a zoo. But maybe you wander by in the middle of it and ask a few questions: who is that? What are they doing with the pandas? Where do the pandas like to sleep best? When do the pandas like to eat? If your child is really engaged, you might decide to spend a whole week learning about pandas and make a scrapbook of everything they’ve learned. Those in grade 1-2 might still need help with writing their answers, but they can draw or dictate to an older sibling or to you. Let your child help create the format for their book – what should be in it, what questions they can answer, what art they can do. If you have access to books about pandas you can practice reading about them. If you want to do some basic math about pandas you can do that – maybe how many there are, whether one Zoo has more or less pandas than another Zoo – follow your child’s interest and look for opportunities to reinforce the skills they already have.

Elementary School: Grades 5 – 8

From grade 5-8 the key learning is about logic. This is the why and the how stage. So let’s say you have an 8 and 11 year old and they both want to bake bread today. You might want to have the 8 year old practice reading the recipe and completing the measurements, but the 11 year old you might ask questions like “why would it ask for the flour to go in last?” Or “how come the yeast needs to be proofed in warm water?” If your child doesn’t know the answers, that’s ok – maybe you set up a mini experiment with two batches of yeast – one in cold water and one in warm to see the difference the heat makes. Or maybe you ask them to look up a video explaining how it works on TedEd. If there’s an instruction they don’t want to follow, maybe turn that into an experiment, by letting them divide the recipe and do half the way they want to and half according to the recipe – just have them mark which is which to see the impact of their choices!

High School: Grades 9 – 12

In high school, the main thing is learning how to communicate all of that knowledge and questioning so that other people can understand it. This is why we write so many essays in high school, and answer so many math equations. But for now, follow your child’s curiosity, and ask them to teach you something new over dinner, or show you a new piece of art or read you a new poem they’ve found or written. Again, we want to encourage their curiosity and the connections between the things they are learning, and their capacity to communicate that to others.

Hopefully this gives you a bit of a starting point for creating CALM and using Curiosity, Connection and Communication to help support your child or teenager’s learning over the coming weeks.

Before we go, I just want to remind you that this IS a crisis of history book proportions. It’s okay if this feels hard – and there’s a reason that we are all acting and reacting a bit out of our norm. Crises have this way of revealing where we’re at in terms of our mental health, and sometimes have a way of shifting that mental health very suddenly. 

So if you or your child or teenager is struggling with your mental health or with your relationship and you’re looking for support please feel free to reach out. 

I am a life coach with 17 years of experience supporting families in crisis. Although I have no more pandemic experience than anyone else, I do have some fabulous tools to support families dealing with all sorts of other issues, like homeschooling, yes, but also pregnancy and the postpartum period, autism, disability, LGBTQ identity, loss (including but not limited to infant loss), and much more. All of my work continues to be 100% online – as it has been for the last three years – and I’d be more than happy to talk about any of these topics one on one with you. Feel free to send me a message, through my Facebook page, or my website: www.poweredbylove.ca

Thanks!

Natural Light

The front of the house is beginning to take shape! This includes a LOT of natural light in the front bedrooms – especially when you remember that these are south facing! And that was no mistake. One of our guiding design constraints was to maximize the amount of natural light and ventilation we brought into the house. We did this because we thought it would be good for our mental health when we inevitably got stuck inside in the winter each year.

But it turns out it might be even better than that!

One of the interesting things I was reading about this week is the way people a hundred years ago used sunshine and fresh air to help combat diseases like the Spanish Flu and TB. Up until the advent of antibiotics, it was really common for people who were sick to lay in rooms with fresh air from both sides, or to be wheeled outside to lay in the sunshine whenever the weather was good. And it wasn’t just common – it improved outcomes for those who were sick by upwards of 40%, while simultaneously lowering the risk of infection to health care personnel!!

 

We now know that vitamin D from sunshine and fresh air are good for not only our mental health, but also our physical health. We also know that fresh air interacts differently with viruses and bacteria than recirculated air.

 

So if you’re thinking about building accessible spaces, consider the role of natural light and natural ventilation whenever possible, and of course, support your health this week with regular time outside, open windows whenever possible and time in the sunshine!

Tools for Life in Physical Isolation

After three years of living mostly in physical isolation, I’ve learned a fair amount about this way of doing life. As such I figured I’d put out some resources over the coming days to share some of what I’ve learned.

Tool #1 – Rhythm, Ritual and Rest

Tools for Life in Physical Isolation - Rhythm, Ritual and Rest

*Create rhythms to your day, marked by when you wake and sleep and when you eat. Try to keep these consistent.

*Create rituals within your day – things you do the same each day at the same time. These rituals provide comfort to us and a way to remember that we are still okay.

 

*Rest when you can – from the burden of things you can’t control; from the noise of panic and fear; from the physical strain of trying to do too much. Whenever possible, rest BEFORE you become exhausted.

Tool #2: Be Intentional

Tools for Life in Physical Isolation - Be Intentional

We don’t do well as humans when we feel at loose ends. We thrive on purpose and meaning and that that’s why we need to be intentional!

 

*Be intentional about MOVING your body.

 

*Be intentional about CREATING something.

 

*Be intentional about CONNECTING with others via virtual coffee dates, text messages, phone calls or other methods.

 

*Be intentional about the OPPORTUNITIES you might have to do things you’ve wanted to do for years.

Tool #3: Get Honest

Tools for Life in Physical Isolation - Get Honest

 

If you want to make positive change – whether around addiction, parenting, gender and sexuality, your partner relationships or a pandemic of global proportions the first step is to get honest!

 

*Get honest about your body: learn to listen to its cues for sleep, hydration, food, movement, and stress management.

 

*Get honest about your emotions: use a journal, talk to a friend or yell at the sky.

 

*Get honest about what you need: practice communicating with yourself and with friends and family what you need, whether it is time on your own, time outside, help getting groceries or therapy.

 

*Get honest about what it will take: maybe you need to rearrange rooms to give yourself a private place to be, rearrange the budget from commuting costs to therapy costs or rearrange your schedule to take more time to connect.

Tool #4: Take Agency

Tools for Living with Physical Isolation - Take Agency

One of the best ways to avoid the sense of helplessness that can lead to trauma is to take agency.

Take agency over your schedule – how you carve up your day and what things you choose to prioritize.

Take agency over your food choices – to make sure your body has the healthy nutrients it needs to fight off disease.

Take agency over your inputs – use block features on social media, choose music to listen to that improves your mood, connect with friends and family who are supportive and caring.

 

Take agency over what you CAN control – and don’t just do this for yourself, but use this opportunity to teach your children as well. For instance, instead of forcing them to do worksheets at home, what is something they are completely fascinated by or that they’ve always wanted to learn about or learn how to do?

Tool #5: Find Purpose

Tools for Living with Physical Isolation - Find Purpose

It’s incredible to me how deeply ingrained our need for purpose and meaning – our need to make a difference is – to us as humans. So it should come as no surprise that even if work is cancelled or school is shut, we still need to find a way to bring purpose into our daily lives.

 

*Evaluate your strengths, skills, abilities and resources – what do you have to offer?

*Look beyond yourself – what do others need?

*Use what you have to support those around you.

 

And of course, consider not only how you can do this for yourself, but how can you teach these skills and thought processes to your children and teens?

Tool #6: Lean Into Love

Tools for Physical Isolation - Lean Into Love

There’s a lot of fear sloshing around right now – I know I’ve had my moments! – but knowing what to do when we catch ourselves afraid is harder. That’s where our final tool comes in – Lean Into Love!

*Take a deep breath to find patience

*Appreciate the other person’s perspective

*Choose compassion and generosity

*Practice forgiveness

*Keep your promises to your people whenever possible

*Take time to listen to each other

*Trust each other

*Show up for one another with support,
hope and loyalty

*Repeat

 

Emotional Regulation in Hard Times

Some suggestions for emotional self regulation during hard times:

Create intentional PLANS and SCHEDULES to help organise your day and increase your sense of AGENCY and CONTROL.

Don’t be afraid to Make these plans VISUAL in a notebook or on a board.

Use MOVEMENT and CREATIVITY to allow your body to process stress as it comes: dance, tumble, paint, collage, bake, build Lego – what works for you?

 

Find ways to CONNECT with other people: use video chats, play board games with housemates, call a friend on the phone.
Don’t leave this to chance – be INTENTIONAL.

 

Use GROUNDING rituals and SPIRITUAL DISCIPLINES – like journaling, breath work, meditation, gratitude exercises, etc – as well as acts of service and intentional choice to centre yourself and lean into love over fear. Remember that taking AGENCY – choosing to do something – is often the first step out of fear.

Preventing Trauma for Complex Care Patients

I first entered the new wing of the Hospital for Sick Children in February 1993 – just over 27 years ago.

Since that time I have had operations, birthed babies, spent time in the NICU, attended outpatient appointments, spent time in the ER, spent time with my kids as inpatients all in this building.

I have been told that in this time, a major shift has taken place in health care, with much higher numbers of complex care patients, and a much higher need for interconnected care. I don’t know the reasons for this, but I DO know that we are not prepared for this as individuals or as a health care system.

There are lots of things that are needed to create the changes that we require. I’m sure lots of them are expensive or complex, but you know what isn’t expensive? Letting patients know that they are SEEN. Acknowledging that what is going on in their lives is HARD. Admitting that you don’t always have the answers, but that you will take seriously the work required to properly find them!

 

This is how you reduce trauma.

 

This is how you rewire the brain to heal from trauma.

 

This is how you create nets and bridges between the cracks and fissures that we are all falling through.

 

You connect.

 

You create a shared story of humanity.

 

And it might not fix the underlying condition, but it WILL lower stress levels in patients, families and caregivers alike, which in turn will improve communication and – I predict – improve patient outcomes in the short and long term.

Let’s Talk About (Disability &) Sex!

Had an incredible time today as I was interviewed on a podcast about disability, where I got to talk about not only being disabled, but being part of a disabled family, and the highs and the lows of that. One of the questions I was asked was, How do your different disabilities play a role in your relationship dynamic?

Here’s a little sample of what I shared:

Having anyone in a family with a disability affects the dynamic, because first of all that person likely requires some extra supports that we don’t normally think of in the relationship dynamic – maybe help with personal care or help with emotional regulation or help physically navigating a space or help with executive functioning skills or whatever.

But then secondly, being disabled – and navigating an able-bodied world as a disabled person – is tiring. My therapist taught me that when we think of our sort of ‘threshold’ for stress, we often think of it as having separate ‘tanks’ – like you’d have a pain tank or a fatigue tank or a ‘stressors’ tank – but it’s not like that. Everything’s lumped in together. So for me, when my pain is at its usual 3-5 out of ten, that’s taken up 3-5 stressor points in my capacity to cope with life before I even get out of bed, or deal with laundry or tried to convince exhausted teenagers that it’s time to catch the schoolbus or whatever. Does that make sense?

And then, when you have MULTIPLE people who are disabled in a family – including your partner – then there’s no one with a ‘full’ tank to be able to pick up the slack. We kind of sink or swim by leaning just enough on one another that we stay upright without leaning so much that we knock each other over!

I think there are probably four areas where we see this really big-time:

#1 would be energy capacity – because being autistic and working full time at a higher-stress job in Toronto means my husband is having to work very hard to ‘pass’ as neurotypical a lot of the time during the day. I have an energy condition but like to pretend that I’m still capable of many things myself. This leaves the two of us both exhausted and wishing the other person could take care of us at the end of the day.

#2 would be emotional interactions. One of the things our autism does is that it amplifies emotional inputs. So if I’m scared about a thing – like an upcoming specialist appointment – and my husband is ALSO scared about it, and I come to tell him about being scared about it, there’s a pretty good chance that instead of calming me down and reassuring me, he’ll freak out and tell me off for convincing him that the world has ended. And it can take us a while to try to sort that out, because, unfortunately, I’ll then respond to his fear with more of my own and we have this horrible tendency to spiral. One of the things we’ve learned to do is recognize this as FLOODING, and to catch ourselves earlier and earlier in the spiral and take some time away to calm down and try to understand what happened before regrouping and taking each person’s emotions out separately to look at them and care for them. Sometimes we do this well, sometimes we still do it badly, but that’s definitely improved over the last couple of years.

#3 would be strain on the finances – as I said, we’re pretty fortunate as disabled folks go, in that my husband has a pretty good job, and he has benefits, but being disabled is REALLY expensive – and having four people in the family with a disability, with one in university – is a LOT. Between the needs of everyone’s disabilities I’ve had to work very sparingly over the past 20 years, and am just now trying to get my coaching business to pick up a bit because it’s finally becoming an option to work more myself, but we’ve essentially been on one income for most of our adult lives, and that means that where my husband’s colleagues are buying fancy cars and going on great vacations at this point in life, we’re trying to argue our insurance company into paying for the co-pay on our wheelchairs and trying to renovate our home to make it accessible and trying to psych ourselves up to buy an accessible van so that I can get around again, and that really does create a lot of extra stress.

#4 would be the limitations on what we can do. My husband’s a very sensory-seeking individual. He loves running and biking and triathlon and rock climbing and swimming and hiking and on and on, and I loved doing those things but could never really manage them. Now with the increase in my disabilities, I’m pretty much incapable of any of it. And relationships – they thrive on shared interests and shared activities, and especially for those of us on the spectrum who may prefer having just one or two very close friends, (or in our case, mostly each other as partners) this has made things really difficult.

What we’ve learned in all of this is that the standard ‘solutions’ simply don’t work for us – disability forces us to be creative in ways that we never would have otherwise have to be.

So, if you are part of a disabled family, or live with disability yourself, I’d love to hear some of YOUR creative solutions!

(If you want to listen to the whole thing – sex talk included – you can find it here!)