5 Things Not to Say to a Parent of a Disabled Child

When you have a disabled child people often say the most ridiculous things. I’ve heard a few over the years and here are a few of my favourites and why they’re really not helpful and at times quite upsetting…

“God only gives special kids to special parents”

When I hear this I want to reply “Well what does that make you Sharon??” But seriously, God does not give special kids to special parents. Most of the time I am fairly uncertain as to God’s role in what happened with my son. Did she stand by and let the worst happen? Or did she step in and save him?

My mum said to me quite early on if ever there was evidence that there was not a God, this is it. Meaning, how could any loving God allow this to happen to a baby. I can certainly see her logic, especially when my boy is plagued with pain and discomfort. But when she said it, we were just so grateful that he had survived, that for me I felt if anything, this was surely evidence that there was a God, and that she had saved him for me. These days my faith is as uncertain as ever, but I do know that I was not handpicked for this job because however special my son might be, I am positively mundane, which leads me to….

“I don’t know how you do it, I couldn’t!”

I promise you, Sally, you could.

There have been many times where I wished I didn’t have to do it, but unlike a faulty mobile phone, you cannot send a baby back when it doesn’t support all the latest apps. So where you want to, or not. Whether you believe you can, or not. You just have to. Every day you put one foot in front of the other and before you know it, you are doing it, and doing it really rather well!

“God only gives us what we can handle”

God clearly thinks rather highly of me! But actually, this too is rubbish. Once again I wasn’t handpicked for this role, and the idea of The Almighty sitting down to assess how far to push me this week is definitely not one I can get on board with. And you know, we all have our limits. You can push and push and push and eventually I will break, just like anyone will when placed under extreme pressure. Because I promise you, there really isn’t anything special about me.

“Everything happens for a reason”

Another platitude that plays into this idea of a grand design. One of the hardest things to learn to accept, in my opinion, is that not everything happens for a reason. Sometimes really awful things happen to good people for absolutely no reason other than bad luck. It turns out there is so much in life that is beyond our control. And maybe there is a sadistic God testing us? how very old testament! But that’s not an idea I can get behind, and it is definitely not a God I can have faith in.

So maybe some children are just disabled. And at this point, I feel I need to point out that having a disabled child isn’t even bad luck. The circumstances around my son’s injury were awful and difficult, but having a disability isn’t bad luck, it just is. This leads me on to…

“As a parent, it’s the worst nightmare”

It’s not. It’s just not. My child is not my nightmare, and he shouldn’t be yours either. There is no denying that being a parent of a disabled child can be challenging. But 100% of those challenges come from the society we live in and the systems that don’t provide the necessary support. My child is all kinds of awesome, from his cheeky smile to his wicked sense of humour to his immense Paw Patrol obsession. I’m as proud to be his mother as I am for any of my other children, and you would be too if he was yours.

So what should you say?

If you’re anything like some of my friends you might have read this and realised that you’re guilty of expressing similar sentiments (with the best of intentions!) And are wondering what you can say that would actually be helpful? I’ll tell you what I told my friends.

We know there are no magical answers, no one can fix the broken systems that fail to support us and our children, and no one can take away the hurt and pain of disability-related illness and trauma. What we need is for our nearest and dearest to hold space for everything we might be feeling while we support our children through any difficult patch.

A significant amount of the usual platitudes are othering, are setting us on a pedestal, and making it hard for us to be truthful about the times where we are struggling. Usually just acknowledging how crap it is all we need. And coffee. So much coffee!

Self Care in the Darkness

It’s that time of year when the nights start drawing in, the weather starts getting colder, nature starts to shut down in preparation for the winter ahead. It can be a time that can affect many of us mentally, as we struggle with the relative lack of sunlight and being cooped up at home more (just as we are getting used to being allowed out again!). This can be especially true for families of children with special or additional needs, for whom survival from one day to the next can be the reality anyway. At least in the summer, there might be more options for ways to keep our children occupied and engaged.

But autumn, and even winter, can bring their own special opportunities too. Hygge is a Danish and Norwegian word for a mood of cosiness and comfortable conviviality with feelings of wellness and contentment. Studies show that people living in the arctic circle are armed with a mindset linked to this that helps combat the long ‘polar night’, a bit of ‘hygge’ might come in handy for us all especially for parents of children with special or additional needs.

In the depths of winter, Tromsø in Norway gets no direct sunlight at all, and only the faint glow of indirect sunlight for a couple of hours or so a day. Yet, despite this, Tromsø’s citizens do not seem to struggle with low mood or seasonally affective disorder (SAD) in the way that might be expected. In fact, generally, the mental health of the good folk of Tromsø is in excellent shape.

So why is this? What is the secret that they share? And how can this be relevant to special needs parents? Well, it seems that there is a ‘mindset’ that people living north of the arctic circle share, and the further north you go, the stronger this mindset becomes. How people perceive and frame stressful events strongly influences how they are affected by them.

People who think about adverse situations and events as a challenge, an opportunity to learn new things and to adapt to new ways of living are likely to cope much better than people who focus on the immediate difficulties as well as negative outcomes that “might” happen in the future. How we respond affects our mental health and well-being, as well as our physical health.

So, what does this Scandinavian positivity teach us as special needs parents? Well, it’s so easy to be dominated by negative feelings, fears for the future, the mental and physical exhaustion we can often experience. But maybe if we can train ourselves to find the positives, to look for the opportunities to learn and adapt, we can find our own ‘hygge’ too. We can find that there are ways to cope with our own ‘times of winter’, those dark periods where it all seems too much. And the more we try it, the better we’ll get at it!

This isn’t to sugar-coat things or to deny the difficulties that we face, and we can’t hide from these challenges any more than the citizens of Tromsø can pretend that the sun is still rising. However, by recognising our own capacity to control our responses we may all find some hidden reserves of strength and resilience to help us face each day.

Hot chocolate anyone?


7 Years of Loving You

Our triplets were born at 32 weeks and 4 days gestation, making them “preemies”. We knew one of our babies would have spina bifida, and possibly hydrocephalus, but didn’t know how affected he’d be until he was born. I vividly remember the team bringing him out of my tummy last (but not least!) and he cried the loudest, despite being a teeny 2lbs 10ozs. That was seven whole years ago now so I thought I’d write about seven things I love about him.

  1. “He’ll never walk”

Yes, that’s a strange one to start with, but stay with me. We were told all sorts of things when I was still pregnant like he was a girl (oops) and the spina bifida wasn’t too bad. It was after his first year that we were told he’d never walk. He is indeed a full-time wheelchair user, but what a lot of people don’t know is Jacob CAN walk. He has a special frame that goes around his body offering him full support, but the ability to move. He calls it his “Hulk Suit”. His orthopaedic surgeon will tell us it’s not “functional walking”, which is true, but it does all our hearts good. He’s also defied the odds and can now control some movement in his quadriceps.

  1. He adapts.

When he was little, Jacob’s newly formed speech regressed completely. We were all taught Makaton, which he took to beautifully. I’ve videos of him singing when he was barely even two years old. He did start speaking again but still uses Makaton since it’s used so freely in his school. It’s amazing!

  1. He has a wicked sense of humour!

We are fairly proud of the fact that Jacob’s humour has developed given all he has faced. He gives epic one-liners and has us all in absolute hysterics! He’s a total showman and loves to be the centre of attention.

  1. He will never give up.

This can be both a quality and a bit of a stumbling block for him at times, although mostly the former! In his seven years, he has had eight surgeries, been in A&E over 50 times, admitted to hospital more times than we can remember, visited an insane amount of medical professionals etc and he still just gets on with things. Of course, it gets to him, but he doesn’t “stay down” long. He’s amazing.

  1. He has developed in ways they said he never would.

Like I’ve said, he has some controlled movement of his quadriceps, but that’s not all. He was given a diagnosis of epilepsy due to epileptic seizures showing up on consecutive EEG tests. He then had a further diagnosis of “non-epileptic seizures” (NES) which were due to his brain being in absolute overload. He had several of these every single day but thanks to supporting from a special school and a great team, he rarely experiences these anymore. His brain was apparently “unreachable” yet he clawed his way back. We are so proud.

  1. He’s amazingly empathetic.

They say people who go through the hardest times will always understand the pain in a different way. I see this in Jacob. He watches his identical twin brother (who’s “healthy”) and sister with nothing but love. If they fall and get a cut, he will want to help look after them. He worries about the boys and girls in his class who are more vulnerable (in his mind) and he worries about me when my Multiple Sclerosis flares. His struggles have taught him to understand other people’s. He recently said to a family member who’d been through a trauma, “I’m so sorry you’re sad”. What insight for a young child!

  1. He has a vivid imagination.

Jacob is one of those children whose teachers will comment “participates actively” in class. Translated: he never stops talking! Jacob tells stories to the point of creating whole other worlds in his head and we have learnt to just go along with him. It seems to be more than coping for him, he enjoys thinking up characters etc. He did once tell a teacher that I “ate coco pops and drank wine at breakfast” though, which wasn’t quite so good (and certainly wasn’t true. The wine anyway…)

Every year with Jacob has brought fresh challenges and heartache, but also an immense amount of pride and joy. I don’t know what we ever did without him in our lives! Happy birthday our little warrior, we truly couldn’t love you, Ben and Chloe, anymore.

Sensory Play Ideas for Autumn

There is so much out there to experience this time of the year.  Every experience is an opportunity to learn.  We have five senses (touch, smell, taste, sight, and sound) and kinesthetics awareness. T.  The fall is a perfect time to enterprise on all of these senses to create learning experiences.  The most obvious and in abundance are the leaves.

Leaves – Whether your child is lying, sitting, stomping, throwing, raking, collecting, crushing…..Small movements yield great sensory benefits.  The colours, textures, and sounds of leaves rustling around provide immediate visual, auditory and tactile awareness like no other. 

Roll around in the leaves-this creates a great environment to explore movement in a safe environment.

Jump on the leaves- a great big pile of leaves is an inviting area to try to attempt a jump even when the execution is scary.

Stomp through the leaves- the soft textures create an uneven surface for all types of little feet to practice balance reactions. Walk, march, crush…whatever fun game you want to create.

Gather the leaves-there are so many fun ways to scoop, gather, mound, rake, and collect all the leaves falling from the trees. 

Touch them- regardless of your child’s position, they can sort, count, paint or glue the leaves onto different surfaces.  A leaf pool or sensory bag, a pine cone, or a big giant pumpkin are all easy examples of sensory sensations. This is a great way to work on fine motor, midline orientation, hand-eye coordination, and in-hand manipulation.

Walk– Whether your child is ambulatory or requires assistance to move about the community, while you walk, talk about the trees, the leaves, and the weather.  What do you think your child will enjoy seeing? Are there any questions that you can ask your child about what you’re seeing or experiencing?

Introduce your child to a mound of fallen leaves and see what they do? How will they explore those leaves? What will they do? This sensory experience will stir up their sensory experience but also complement their motor, coordination, and communication development. As a parent/caretaker or therapist, we’re always looking for a child’s response to their environment because that means they’re taking it in, thinking about it, and the end result is their response. That’s how they learn.  They collect all these experiences, memories, and thoughts, and build on them. Nature can be calming or exciting, but regardless it surrounds all of us. There’s no right or wrong way to engage in sensory play. It’s self-directed, it’s inclusive and it’s hands-on.  These are learning principles that should be applied to all play. 

Dr Sharon Galitzer, PT, DScPT, MS, CIMI

Pediatric Physical Therapist

The ‘F’ Words

FUNCTION, FAMILY, FITNESS, FRIENDS, FUN, FUTURE

When a child has a condition that impacts movement, communication, or processing a parent will seek any and all treatment interventions to help their child.  In this 21st century, there are many robotics, assistive technology, and medicinal options that can support their rehab.  As a physical therapist who has worked with many children through their childhood into adulthood, there’s a ripe time for each of these interventions, and you the parent, will determine when your child may be able to benefit from any or all of these interventions.  However, when I saw the ‘F’ word being introduced by CanChild, Dr Rosenbuam, I realized that these are the essence of a child’s existence.

Function- what can a child do, what type of assistance do they need to experience the world around them

Family- Family-centered therapy where therapists collaborate with parents and involve them in goal setting has shown to be more effective and to have greater outcomes. You’re the experts, you’re the caretakers, and you are better able to identify what is challenging for you and/or your family. As a result, parents can problem-solve with their clinicians to explore treatment interventions and different ways to encounter obstacles and challenges.

Fitness-JUST GET OUT THERE AND MOVE!  Whether it’s therapy or not, recreational activities can also be social events, and a change of position or a change in environment can have a positive effect on the lives of all families and children.

Friends- Encourage peer interactions.  Friends for everyone, parents, siblings, and children.

Fun-Find out what brings your child joy and do it.

Future- As clinicians, we always think about the future and how we can maximize a child’s function.  We recognize that there are daily challenges that parents face, but these early years are so important. They set the base of a parent seeing their child’s strengths, believing in their capabilities, and moving forward with a plan, and willingness to modify the plan as needed. 

There are a variety of factors (economic, accessibility, time-consuming, fear..) that may prevent a child with special needs from experiencing events that other children their age are experiencing.  The most basic event that a child can experience is ‘play’.  I urge you to brainstorm with your physiotherapist about creating opportunities for your child to feel, see, hear, move, and touch on a daily basis. If they can’t move around and get there, bring that world into their space. 

Just think about how these factors can help your child.    

Dr Sharon Galitzer, PT, DScPt, MS, CIMI

Pediatric Physical therapist

Prematurity

I was 33 weeks and 1 day pregnant when I gave birth. The day is ingrained in my memory. It was something that was not really on my radar, though it was always a possibility with identical twins. Everything was going well, better than well. But when things went wrong, everything went wrong.

It’s when there are so many doctors and nurses in theatre, a team for each baby as well as for you. The room is so crowded that people literally stand around the edge until they’re needed, and they know so perfectly when they’re needed that there isn’t even chaos. They work together in perfect harmony when your life is potentially falling apart when your children are critically unwell. I remember trying to see what was going on, but I was lay, strapped to the surgical table, still being operated on.

And nothing can prepare you for the moment you see your children in SCBU. The wires, the machines, the tubes, the lights, the nurses and doctors, the smell, and the pity on people’s faces. Not one but two children are seriously unwell. You have all of the questions, and you ask them all apart from the one you really want to ask- will my children make it?

You quickly come to learn to know the sounds of the machines- which machine to watch and worry about, which machine always goes off but is never really a concern. You learn what each wire is for, and how to move and use them. You wonder why your child is silent until you realise, they can’t make a noise because the tube in their throat is in their lungs and when they open and close their mouths silently, they are actually crying. Then you wonder why it took you days to realise that.

You learn which procedures are standard and need to be repeated and which to be wary of. You learn it all, sitting by their bedsides for nearly 24 hours a day, 7 days a week.

You become institutionalised to a medical world you never knew existed. The hours turn to days, and days to weeks. Thankfully my babies became well enough to come home. But our journey through SCBU will live with me for the rest of my life. I’ll be forever grateful my babies came home but forever traumatised at everything we went through.