Don’t Get Me Started on the Word “Just”

“I see your son doesn’t walk. Oh, he’ll grow out of that! Just keep him practicing, he’ll get there!”

“You don’t need to feed him, he’s old enough to do it himself. Just give him the spoon, he’ll figure it out.”

“If you keep doing things for him, he’ll never learn. Just let him fail at things, and he will learn to adapt.”

Can you hear my frustrated sigh through the screen?

We’ve all been here, confronted with a well-meaning stranger (or family member) who just wants to give their best piece of parenting advice to us. Sometimes you can see them coming from a mile away. At a shop, they lock eyes with you, give a friendly smile and, for some reason, make a beeline for you and your additional needs child. You brace yourself, hoping they will say something nice but not advisory. If you’re like me, that hope is often dashed.

Now, I try to be a measured person. I try very hard to see the motivation behind someone’s actions and respond accordingly. But I confess, when I receive unsolicited advice about my son, my patience grows very thin, very quickly.

If only the advice we are given was simple for my son to achieve. Or easy to accomplish. Or relevant. Or… you get the idea.

Why does it bother me so much?

The comments of these well-meaning people, puts a dampener on the time our kids put into learning how to do things. It diminishes it to “just” doing this or that. For our kids, there is no just picking up a spoon; or just holding their head up, or just interacting with peers, or just communicating their thoughts. These activities require so much of their patience, physical determination, and emotional stamina. It is insulting to have this leveled to a “just” statement. It’s insulting to my kid, and it’s infuriating to me.

Opinions I value

You know whose opinion I do look back on and see value in? The first neurologist to treat my son when he was a few days old. That neurologist looked at my son’s MRI and observed him over a couple of days. He told me, in no uncertain terms, that my son would have significant developmental delays. Sure, at the time I didn’t know the extent of that term. But I can see now that the doctor’s clear and direct communication of an expectation allowed me to prepare. Had he said, “Your son will just have developmental delays,” the expectation would’ve been entirely different. That simple word – just – implies that challenges can be overcome simply.

Managing expectations

As it stands now, I try not to have expectations of my son’s abilities or his interest in completing tasks. Yes, I do think my son can do tons of things he wants to. He is determined, strong willed, adaptable, and open to learning. He is whip smart and can be quite stubborn about doing things by himself. These are all great qualities, and I celebrate them alongside him daily. He will never be just a kid who should be doing x or y by this age. He is so much more than that.

The Importance of Physical Touch and Compassionate Care

Though we are all different and complex in our own ways, we human beings have a few simple needs in common: the need for community, the need for safety, and the need for personal interaction. Those in more vulnerable groups like the elderly, disabled, or medically compromised often feel these needs more strongly than other people do. Because they are dependent on caregivers to obtain them on their behalf. I want to talk about the need for personal interaction because I feel this is the highest of all needs.

Physical interaction, expressed as physical touch or eye gaze, is important for several reasons. From a biological standpoint, every time two people look directly at each other or physically touch (could be as simple as holding hands), oxytocin is released. What is oxytocin and what does it do in the body?

What is Oxytocin and what does it do?

Oxytocin is a hormone released by the pituitary gland. When it releases into the body, it does a number of amazing things! Oxytocin is shown in many situations to have many positive effects. When mothers and newborn babies gaze directly at each other oxytocin is released. A bond begins to form between them. Studies show that when people with PTSD, experience the introduction of oxytocin has been reported to lower their cortisol levels. The “fight or flight” hormone responsible for the feeling of needing to escape a harmful situation. Which gives patients a sense of calm and decreased insecurity. In elderly patients, compassionate care from their doctors in the form of a warm handshake and direct eye contact, has been shown to immediately reduce blood pressure and heart rate. And in therapeutic settings, holding someone’s hand has been reported to reduce stress and anxiety levels.

The effects of giving a small amount of physical contact to someone can make a big difference in those being cared for! Doctors and nurses are steadily increasing their practice of compassionate care, and caregivers can take a page from their book.

How to connect with others

Many of the ways you can connect with those you care for are very simple! When you are speaking to someone, look directly at them, on their level. If the person is in a wheelchair, immobile, or a small child, move to their eye level. If it is appropriate, hold the person’s hand or put a hand on their shoulder. And if you know the person very well, there is no better immediate help than a hug. In other settings, playing music and dancing with a person casually while holding onto their hands can be an amazing therapy.

When you show care to someone by looking at them, speaking in a gentle voice, and giving a small amount of physical contact, you are communicating clearly to the person that you are present and interested in them. There is no substitute for the connection that can be made, and the care conveyed through this simple practice.

Using EMPATHY When Relating to Those with Disabilities

This acronym can be a helpful tool for communication.

There is no doubt that we should all use more empathy when relating to anyone, but especially to those with additional needs.

But did you know there is a commonly used acronym for empathy?  In the medical profession it is widely accepted as a useful, necessary, and successful tool for providing compassionate care. We can learn a lot from this helpful tool!

The “E” stands for eye contact.  Making eye contact with a person shows you acknowledge them as an individual.  This may seem obvious but looking directly at a person implies you see them apart from yourself, as another person with their own set of values and concerns.  This is highly important when communicating with someone who is nonverbal, too! 

The “M” is for musculofascial cues.  In other words, facial expressions.  When you speak to this person, do they smile?  Grimace?  Do their eyes convey distress or pain?  These are all important cues to watch for.

The “P” stands for posture.  How is the person you’re speaking with sitting – upright, slouching, with difficulty?  Of course, we will be sensitive to the typical way this person’s body is affected by their disability.  However, if they are normally able to sit upright but are now slouching down and with eyes downcast, this might tell you how they are emotionally in this moment.

The “A” stands for affect.  This one is a bit trickier to understand and may not apply in all interactions.  Affect is the general attitude of a person, which considers all the other cues talked about here. For example, a caregiver might have an effect of being positive, always putting a positive spin on the other person’s comments.  This could be helpful or not; if our aim is to acknowledge someone’s concerns as legitimate, we should try to match their affect. 

The “T” represents tone of voice and is straightforward.  Pay attention to the tone someone is using, and how your tone might sound to them!

The “H” stands for ‘hearing the person.’  Not only does this mean literally listening to them when they speak, but also trying to hear what they truly mean.  This can be challenging if someone has affected speech ability; try your best to understand and don’t underestimate the power in asking questions!

The last letter in the acronym is “Y” which is for your response.  We can practice good listening and overall empathy toward our disabled brothers and sisters all we want, but if our concluding response to them is dismissive or cold, then the effort is nullified.  If you do nothing else in these steps, focus on your response being warm and sincere!

Our world can become a more accepting and inclusive place, one personal relationship at a time.

Created Controversy

Why does the public think inter-abled relationships are strange

There is a couple I have followed for years, on several social media sites.  Now married, they met in college and bonded over shared interests, as many do, and started dating.  Eventually they moved in together and started planning for their future life as a married couple.  Now, in addition to having personal interests in common, they have shared goals and dreams.

None of this is controversial, right?  A typical couple going through the typical motions of merging their lives.

Now, what if I told you that the husband is – gasp! – disabled and in a wheelchair indefinitely, and the wife is – gasp! – his caregiver?  It is at this point the non-initiated (to the world of special needs many of us live in) will have all sorts of questions:

Why doesn’t she find someone else to couple with, someone without complex needs? Doesn’t he feel guilty, for keeping her in a relationship as his nurse?  How does it even work for them to have both a medical and intimate relationship?  It’s so weird, the whole thing. 

To read the comments on this adorable couple’s web page is to have your stomach turned.  How can people be so cruel, to put this man down simply because he cannot walk or dress himself?  He is intelligent, very funny, caring, conscientious and loving to his wife.  The comments for the wife are often worse: she ought to leave her “invalid” husband; he’s a burden to her.  And of course, she can “do better” because she is an attractive woman.

There are myriad assumptions represented by these questions.  To start, that love for a person is based on either their physical appearance or physical ability.  This is wrong for many reasons, and a thoughtful person should instantly reject the idea.  Really, do we stop loving someone when they become ill, old, weak, or otherwise less physically appealing? Nonsense. 

Another opinion lurking within these negative comments is that a romantic partnership survives best when both parties are self-sufficient.  But, if both partners are self-sufficient, why do they want to be in a relationship anyway?  And do the commentators believe that we are all so selfish as to refuse to aid those we love?  If that’s true, we are all better off being alone.

The last insidious assumption being made by anonymous commentators is that the wife is somehow obligated to provide care for her husband.  However, them being married shows her commitment to him regardless of his care needs.  He respects his wife so much to say that they can hire a carer if she’d prefer. But she desires to care for him herself.  They are both acting in honesty toward each other. 

To those of us who love someone with complex needs, the objections to “mixed ability” couples are laughable, but also insensitive and maybe even loathe.  Our desire for any of our loved ones is the same; for them to find peace with themselves/their condition, and to find others who love and accept them for who they are.  There ought to be nothing controversial about that

New Therapies, New Hopes

After four years of waiting, my son is eligible for stem cell therapy

Before my son was born, I never gave a thought to stem cell therapy. I knew what it was because an aunt had undergone an infusion for her rheumatoid inflamed knee, but I really had no clue what the therapy was meant to do, or why it was controversial at the time.

Shortly after my son came into the world, the topic of stem cell usage became very important. Henry suffered a brain injury sometime during the birth process, and as a result, has dyskinetic cerebral palsy and hypotonia in his torso. Doctors at his birth told us he would have global delays in physical abilities. The combination of low muscle tone and poor brain-muscle communication have brought him a host of difficulties: gross motor movements, using his hands without them closing uncontrollably, being able to speak intelligibly – these are some of the major issues he is overcoming. He still has a long way to go.

What does this have to do with stem cell therapy? Good question.

I’m a firm believer in the typical therapies presented to us. Henry has been in physical and occupational therapy since he was two weeks old. He participated from birth to age three early childhood education group for two years. He is now supported by therapists in his school for PT, OT, and speech services. He has made amazing strides! I’m pleased that Henry’s persistence has not been diminished over time, at all. If he wants to do something, he’s going to figure out how he can.

So, we’ve done all the therapies we could get our hands-on, and Henry has participated beautifully. But could we be doing more or something else to help him develop? This is where the stem cells come in.

In late 2015, we found out about a stem cell study being done at a renowned institution in the U.S. We immediately contacted them and provided enough medical history to get Henry on the list for consideration. Months passed. A year. Eighteen months. We kept contacting the study coordinator but got no further in the process of them actually admitting our son.

In the meantime, we kept trucking along to therapies, week after week, month after month. Two years turned into three, and still, we had no idea if Henry would get the chance for stem cell infusion. We had banked his sister’s cord blood when she was born and knew we could use it. All we needed was a green light to go ahead.

I had pretty much given up on hearing back from the university. And then, four years into the waiting, I finally did. My son is not eligible for the study, but he can still have the infusion performed! His appointment has been scheduled and he is ready to go.

And now, we wait again. But this time I am waiting with the hope of something that seems closer, more real than before. Please check back for updates on this exciting new time in our lives!

Holiday Hibernation

It’s perfectly acceptable to bow out of seasonal festivities

This season brought so many activities and events that don’t appear throughout the rest of the year. We had the neighbourhood walking tour of lights. And Aunt Betty’s cookie exchange. And the church Christmas brunch.  And toys for tots volunteer gift wrapping. And a white elephant gift exchange for kids in our playgroup. And more! Every day of December it felt like another invite was received. Personally, I was happy to receive them.

There was a time when my son was too needy and was emotionally unable to join me at a social gathering or let me go without him. Strangers (even if he had met them several times) startled him, made him nervous. He could sense that they didn’t understand his complex needs, however willing to help. For me, having my boy with me meant I could never relax. I don’t say that in a selfish way; my primary job and joy is to serve my son. But knowing he was in a new place where he could fall, hit his head, get scared – these possibilities would occupy my mind so much I couldn’t enjoy myself. I stopped attending events altogether. It was simply too difficult.

Fast forward a couple of years. My son is now much more intelligible when speaking, and he is adept at using his talker. Our circle of friends has not changed significantly, so he’s used to being around my closest group. He attends school, and so interacts with different adults than at home, and his social comfortability has positively increased. As a result, I’m able to both host events and attend others without my son, and he is comfortable either way (as long as I give him enough notice that something is happening).

But you know what? Either of these choices – to accept invites and attend holiday events, or to hibernate through the whole season, because it was too difficult or because you weren’t interested – are completely fine. Over a longer timeline, you’ll find that the closest and most supportive friends in your (and your child’s) life will not be offended by your declining their invitations. They’ll keep inviting you, to express their love for you regardless of whether you ever come to their cookie exchange or not. And one day, you might feel up to coming out of holiday hibernation, and those friends will welcome you with sincere hearts.

Lights, Sounds, and So Much More

 The sensory elements of this season can be magical

In our town, these last few days before snowing weather mean many people are hanging up lights, setting out yard displays, and otherwise decorating outside. After all, who wants to do this when your fingers are freezing? Whenever we are in the car after dusk, one of my kids begs me to drive down neighbourhoods she sees lights twinkling in, even if it takes us out of our way. My sensory seeking youngest is fascinated by rainbow lights and points out the tallest decorated trees she can see.

When we’re in a store and she hears the inevitable Christmas music playing, she can’t help but dance or at least stomp to the beat. She might also start drumming on a box or find something on a shelf to use as an instrument. If we’re in the car with the Christmas radio station playing, I can hear her singing and kicking the back of the seat to the rhythm.

She simply cannot help herself joining into the sounds and visual elements of this season! She also wants me to put lit trees in every room of the house. And just wait until she finds out we are making gingerbread houses – the crunchy gingerbread, the super sweet icing, the sour and spicy candies to decorate (and eat of course) might send her into sensory overload.

This is my season to indulge this little sensory seeker! We will make lots of holiday treats that she can smell, touch, taste, use the mixer and food processor for. Buying gifts for her is my treat: she is getting a slime smorgasbord, complete with cutting and smoothing tools, as well as mix-ins like small beads and chunky glitter. Kinetic sand will be a new experience, and perhaps something to stimulate her gross motor skills also, like stepping stones, or a game with a jump on the floorboard.

If you have a sensory seeking child or friend in your life, slow down and have fun with them this season. Crafts, food treats, visual and auditory fun is all around you, and magic for the taking!

I Don’t Want to Say We’re ‘Fine’

How are you? Probably the most ubiquitous conversation starter, right? I bet we each hear this no less than five times a day, sometimes many times more. It’s meant to be a lighthearted inquiry, and often it’s used as a mere phrase, without much meaning attached. After all, doesn’t the asker usually expect the response to be, “I’m fine, how are you?”

In saying there is no meaning attached to asking this question, I might be overly cynical. I’ll grant that. It’s likely true that some people don’t really know any other way to start a conversation, or it’s so ingrained a habit that they don’t realize they’re saying it half the time. Still, others do ask it with sincerity, and they are hoping for an honest answer.

Do you have a typical answer to this question? I don’t. I’m one of those annoying people that always, always, think about my answer before giving it. And, because I’m not good at concealing my emotions, I usually answer with blunt honesty. If something is going poorly, that’s what I say. If there was a highlight to the week, I’ll talk about it. You get the picture.

I’m usually speaking on behalf of my whole family though, so I do try to take them all into consideration and not just talk about myself. For my son, in particular, we are seen as a unit, not really separate from one another. For this reason, though sometimes the question is aimed at me, usually it’s implied that I’m going to answer for him as well.

So, special needs boy and mom unit, how are you?

We all know the answer to that, if we are speaking frankly, can and will vary wildly from one moment to the next. There are physical and social obstacles, medical interventions, education proficiency questions, language barriers, goals met, abilities stagnated, friends gained or lost, mental exhaustion, joyful interactions, and on. My response to everything going on can also vary wildly depending on my perspective. Or my son’s. Or both.

I feel a bit guilty for those on the receiving end of my answers at times. I’ve probably made more than a few people uncomfortable with my own lack of filter. But I really can’t help it; I’ll probably never say “I’m fine” and move on because if I say that, people might stop asking.

Ready, Set, Play!

Inclusive options should be available at all recreation centres

Here in the middle of the U.S., the leaves are falling and temperatures are dropping, which can only mean one thing: winter is right around the corner. During the cold weather months, many of us spend more time (a lot more time) inside our homes. But when the cabin fever sets in, it’s nice to venture out with the kids to a favourite recreation centre.

Our family is blessed to live in a community with many options for indoor fun. We have children’s museums, planetariums, movie theatres, indoor gyms, trampoline parks and even indoor water parks. Everything is accessible to wheelchair users, so that’s a great start. Many options are low cost or free, and to this frugal mom, that’s even better.

Unfortunately, not everything is available to my son with cerebral palsy. A few simple tweaks could really help him and other additional needs kids to have just as much fun as their peers.

First, put some of the rotating new exhibits on the first floor of the facility! This would be awesome at the places that don’t have elevators. Trampoline parks have a bevvy of soft helmets available for rent! Cleaning those dozen or so that would get used isn’t a big deal (it’s got to take less time than sanitizing all those trampolines, right?), and a helmet could be the difference between someone getting to jump safely and not getting to at all. Similarly, water parks can rent life jackets of different kinds for those who need one. Some of our kids really just want to float, but need extra support that specialized life jackets provide.

At the very simplest of solutions is for facilities to offer a weekly day that only special needs kids can attend. More staff could be on hand, and softer music played, light shows slowed down or otherwise modified for reducing sensory overload. A smaller capacity of attendees would allow more space for those kids using walkers or other equipment to get around. And if the business isn’t sure how to modify the facility, they can inquire of parents through a website survey.

Do you have a favourite recreation centre that could use some modifications? Write them a letter or submit an inquiry via their website! Advocating can be as simple as that, and could help all our kids to get out and play like they want to.