Living Life to the Fullest

 What does this mean for a special needs person?

We live in a time when we’re told “Anything is possible” in regards to our life path. Our kids are often asked what their dream job is, and their answers are encouraged and nurtured – no matter how grandiose they are. You want to be an Astronaut, Circus Performer, Race Car Driver, President, Professional Athlete, or raise Kangaroos for a living? Well, baby, it will be a lot of work, we tell them, but you can do anything you set your mind to!

Then they start school and, within a few years, are being coerced into more practical positions: a nurse, a code writer, a mechanic. Or they’re set on a path by expectant parents toward perpetual education: go to university, then graduate school, then teach.

Though we start them off with best intentions, cheering them on in their chosen endeavors, it doesn’t take long for our kids to find out that they are simply not great at everything they try to do. This is true of all kids, not only those with additional needs. And of course, it is true of all humans in general. Simply put, we are not all going to be geniuses and multi-talented ingenues.

So what do we do as parents when our kids face this reality? After all, we’re responsible for telling them they could “do anything they set their minds to,” right? We tend to look like hypocrites if we agree with them, or liars if we don’t. It’s a merry-go-round of trying to nurture them emotionally while teaching them the hard truths about life. It’s our own fault, really, if we’ve raised them with an eye firmly fixed on “realizing their potential” within a career or vocation.

Now let’s contrast the encouragement given to a child with special needs. I’ll use my own experience with my son as an example.

My son has dyskinetic Cerebral Palsy and Hypotonia, both of which affect his core strength, coordination, speech and motor ability. This is a result of a brain injury at birth, so it’s the only way he’s ever been, or anyone has ever known him.

There have been teachers and the occasional well-wisher along the way that have asked, “What do you want to be when you grow up?” But, for the most part, people (including myself) avoid this kind of conversation with him. There are a multitude of reasons for that, but many boil down to the obvious fact that his motor impairments will likely exclude him from many of the more imaginative paths kids usually profess. Could he be a firefighter in some capacity? Maybe. But the kind that runs into a building and carries people to safety? Probably not (he doesn’t walk, for starters).

So how do I encourage him? It is vital that I do, and that it’s done with sensitivity and wisdom.

When we talk about the future, I focus the conversation on his character, not his apparent physical abilities. Could he do this or that in life, sure, but more importantly, what kind of person will he be? Will he take risks, be sincere, continue to persevere despite setbacks? Will he be a truth-seeking person, a diplomatic friend, an objective listener, be comfortable with humility, and have a love for others? These are the developments I care about.

Each of our children, regardless of their neurological or physical condition, has the potential to become the person described above. This is the potential we should encourage. Reaching for this is how they live a life to the fullest.

5 Tips to Help with the Back to School Transition

Back to school…back to life…Have you found yourself wondering “How can I help my child transition?”

Some children may feel overwhelmed, especially after being at home for the past year and a half in a familiar setting with familiar people. There will be new friends, new routines, new expectations, and all in a new foreign location. 

Whether your child is mobile or non-ambulatory, verbal or non-verbal, a social story that provides them with all the information they need to feel safe will help.  This story should be meaningful to each child so it may be verbal, presented as a book, or simply contain pictures. 

Physically go to their new setting and show them around. Narrate as you walk through the space letting the child know where they’ll enter the building, the route to their classroom, and finish up with “This is where I’ll meet you at the end of the day “ or “ This is where you’ll get on the bus at the end of the day.”  Relevant information inside the classroom should point out the great toys, the view outside the window (if applicable), their cubby, and the location of the bathroom relative to their class. They’ll probably have an opportunity to face time with their teachers before the school year begins.

All children of all abilities can benefit from the following:

Create a social story for the event.

Break the day down into what will happen – First and Then

Stay positive.

Give your child choices when preparing for this new space (ie. “Which backpack do you like?”).

Lastly, review your child’s IFSP or IEP and set your child up for success. Each teacher will become familiar with the children in the class and their accommodations, it never hurts to reach out to the teacher because it is a team effort. 

There are children who are nonverbal, have a difficult time with transitions, or have a difficult time with interpreting and showing emotions.  That doesn’t mean that they’re not experiencing these feelings inside, it just means they can’t express them, or even worse, they may express them in undesirable ways such as certain behaviors, self-stiming or even worse, crying. 

Be proactive and prepare them in the most meaningful way, so that they understand what is to come.  I’ve witnessed children come down from a meltdown to happy smiles within minutes. Therapists and teachers have been through this many times, don’t worry, WE GOT THIS!!!

Dr. Sharon Galitzer PT, DScPT, MS, CIMI Pediatric Physiotherapist

10 Tips for Going on Vacation with a Child who has Sensory or Motor Challenges

Have you found yourself asking the question “We want to go on a vacation but we’re not sure how our child will react?”

Going on vacation with children is challenging, but going on vacation with a child who has sensory or motor challenges is especially challenging.  However, I’m sure you would agree that taking a break would be beneficial to everyone.  So, let’s talk about some strategies that could help both you and your child. Choose a setting that the child may find interesting and fun.

Limit the number of hours – If it’s going to be noisy or busy, try to limit the number of hours you’re there and make sure that you have a plan B for some down time to regroup.

Plan ahead – either go through pictures, create a social story or view on a lap top to let the child know where you’re going and what they’ll be seeing.

Call ahead – Ask about special accommodation if you think it will make your life easier. You’d be surprised at what businesses can and will do to help you.

Anticipate where along the way your child may have challenges – Such as, the check-in at the airport, boarding the plane, disembarking the plane, or activities for a long car drive.

Don’t rush – We all lose it when we’re rushing, and your child can sense your angst.

Aside from the fun, think about all the social, emotional and cognitive benefits of a change of environment.

Expose your child to as much of the world as possible – Spending time in a variety of environments creates more opportunities to see, think, feel, move and explore. 

Expose the world to your child – It is so important! Autism awareness, Cerebral Palsy awareness, wheelchair use. Exposing people to children who are neurodiverse or who use adaptive equipment is an important part of inclusion and accessibility.

Enjoy each other – Family time is really important!

Change of Scenery – You’ve worked really hard, and it’s really important for you to have a change of scenery.

Ultimately, on the surface vacation is simply fun. On a deeper level, it allows a family to create new memories, participate in new experiences, and to do it together.  Every minute of every day is a teaching experience. By changing the experience, you’re expanding your child’s scope of the world.  

This experience will look different for each family based on finances, location and the abilities of a child. But, when all is said and done, and A LOT of preplanning, everyone comes out on the other side empowered. 

Your child will be exposed to things that cannot be taught at home or in a classroom, a trip expands your child’s life experiences thereby expanding their horizons, and lastly, make accessibility a current topic for places of business and in the general populace.  Go and see all you possibly can.

Photo by RODNAE Productions from Pexels

An Invisable Disability is still a Disability

We have been watching a lot of netball in New Zealand this year and the team we follow, the Mystics, had advanced to the Grand Final.  I was on a course but my husband Gareth wanted to take Isla to the Grand Final to experience the occasion. She likes the big occasions but can also get overwhelmed easily due to her being autistic. Sometimes she lies down to sleep instead of processing all the stimulation from her senses, lying on her assistance dog, Bo.

When booking tickets he thought that it would be a better experience if they could have some space for Bo and for her to lie down on the floor. Instead of booking on the internet he phoned to get some accessibility tickets. The booking agents were helpful and asked if they had a wheelchair but when he explained that they would have an assistance dog they said that they would have to send an e-mail request to the event organisers. He expressed to me that he had feelings of guilt because he didn’t want to take up the space for a wheelchair bound person. He also knew that being seated in a crowded section would not work and would not be safe from a fire or emergency point of view.  So, in the e-mail and in further correspondence he referred to Isla’s assistance dog as a guide dog because he felt that was more acceptable to event organisers.

Eventually he managed to get two tickets and some space for Bo and went along to the event. Isla was very excited and looked forward to seeing the arena, getting some hot chips and cheering for the Mystics. True to form after watching the first quarter, she decided to lie down on the floor and slept for the next two quarters. She woke up for the last quarter to see the Mystics win and pick up the trophy.

It was another occasion where, despite not having a physical disability, the need for more space in an event like this is very real for us to participate as a family. He admitted he found it hard to get over his inhibitions to request an accessibility ticket. This was partly because he needed to accept that considerations will always have to be made for Isla so she can enjoy events like everyone else in her unique way. But also realising that invisible disabilities are still not accepted entirely unless visible with a wheelchair.  

Stages of Acceptance of a Diagnosis

We had no inkling that our daughter Isla wasn’t progressing as she should until around the age of 2. She reached all her milestones until speech didn’t develop as it should. We got the diagnosis at the age of 3 and I went through various stages before I fully accepted her diagnosis. At 12 years old our life with Isla is a different from what we expected but is a happy one.

The Fix

The first few years after diagnosis was an intense time spent trying to fix her. Trying to find the right treatment, specialist or medication that would make her come right and be “normal”. It was so hard to envisage how she would progress but there was pressure to give her the best possible chance to reach her potential.

The Fight

Much to my surprise I had to advocate and push for her to get the care she deserved. I was made to feel I should be grateful that she wasn’t worse off. I could have easily given up here. She could have easily fallen through the cracks if I had listened. 

The Ride

Once Isla was in the right environment her development rallied. This was mixed with a rollercoaster of emotions as expectations were met with the reality of slow progress. Reaching developmental milestones took longer with a lot more practice and often a different approach needed. The feel-good factor when she reached these steps towards independence and growth was always amplified.

The Acceptance

I did not give up but I mellowed. I was not failing letting Isla be herself. As the years passed her limitations became clear and no matter what I did nothing was going to change that. Our focus changed from academic skills to life skills. From worrying about what her place would be in the world to enjoying our world with her in it.


My fierce love for Isla has never changed and I fully accept and enjoy her just as she is. Expectations and pressures do not exist now. I no longer feel like I’m missing out on normal life but realise I enjoy our life that Isla has created for us. This is our normal.

Parent Care

I like to write about this subject once every month or two. It’s an extremely important one and it’s something that all moms especially those with children who have special needs or who have gone through something traumatic deal with. It’s the mom‘s mental health blog.

Parent mental health is something that is often talked about but not often dealt with. It’s rare that we take time for ourselves. We as parents are pulled in so many directions. Right now my daughter is fighting sleep until late. Once she is in bed I stay up too late just to get some time with myself and my husband, meaning I wake up tired. It’s a cycle that keeps repeating but I know it’s not going to be forever. I know that squeezing in that small time to myself is huge, even if it means I need another cup of coffee in the morning.

I have several hobbies that give me my “me time”. I run my own minky products business and I work on that as often as I can. I also read, a lot. Reading is something that I don’t compromise and read every night before bed. I make sure I am in bed early enough to read before falling asleep. Find a hobby for yourself that you don’t compromise on. My husband walks, he walks between calls, he walks in the morning, he walks in the evening.

Parents, take time for yourself. Soak up that extra five minutes in bed, don’t feel guilty when your child is playing by themselves. ENJOY IT! Right now my daughter is singing to herself and playing in her messy room. I need to remind her to clean it, I need to vacuum under my bed, I need to get a workout in but I am writing this blog. I am spending the extra time I can to write this blog and catch up on a show. At some point my daughter will come in and want me to play with her or take her to the park like I promised. Until then I am going to sit and type, drink my coffee and plan the day.

Toileting a Girl with Autism

After having two neurotypical children who were toilet trained relatively easily it was all new to us with our daughter Isla who has a rare chromosome disorder causing autism and development delay. The first time we tried at the age of 3 neither Isla or I were ready. After many many accidents we decided to put it off until summer when less clothes were more acceptable and appropriate. It took a number of attempts and adaptions before we had complete success.

A Plan and the Right Equipment

When we tried again there were still no signs that Isla was ready.  We were under time pressure this time though with her starting preschool (kindy in New Zealand) so this time we had more of a plan. With Isla being a little bit older she was able to sit on the toilet without a potty which worked easier for us and made more sense to her.

We invested in a decent ring/support to put on the toilet seat and a stool which she would put her feet on. A lot of children with autism, including Isla, often have poor muscle tone. This made it difficult for her to sit on the seat as even though she was big enough she was unsteady. The stool and the seat with her legs at 90 degrees steadied her, letting her concentrate on the task at hand. This was all that was available at the time and she used these consistently until the age of 8. We would pack the seat when going away in our suitcase and when unable to take the stool due to luggage space we would improvise.

Toilet Timing vs Toilet Training

Now the main difference with Isla was she was toilet timed.  With my other girls they would tell me when they needed to go. Isla on the other hand wasn’t getting the same signals through so we had to tell her when to go otherwise it would result in an accident.  No1s was fairly easy but No2s took some time to master.

Timers and Timing

We used a timer to remind Isla (and me) that is was time to go to the toilet.  At first we started going every half an hour and then increased it to every hour. We tried to give her lots of fluids (mostly unsuccessfully). Even if she wasn’t successful, we praised and washed hands and then tried again in half an hour. Admittedly this is easier than it sounds. What would happen is that she would sit and not go but then wet her pants 5 minutes later. However consistency finally paid off and she eventually got the idea.


We took photos of Isla and made her a chart of what to do and put it on the wall by the toilet. She had visuals at kindy and was on a toileting schedule for the whole time she was there. Isla had trouble pulling down her pants and pulling them back up. When she was told it was toilet time she would just pull them down then and there and often come out of the toilet with nothing on. Her motor skills have improved with age but we are still working on her modesty at the age of 12.

No1’s, No2’s and Distraction

Isla couldn’t always feel the sensation of wanting to go so we had to rely on timing and watch her for signs. Crouching down and generally looking pretty uncomfortable were often a give away as well as a tell-tale aroma. We were advised to let her sit with her IPAD and praise and reward instantly when she was successful (even before she got off the toilet (not entirely hygienic I know). We tried to use a reward chart but Isla didn’t really understand its purpose at the time. She was more about instant rewards so she would get a small chocolate as soon as she was successful after a splash of hand sanitiser. 

Isla is still unable to wipe herself properly but tries with mixed results. The teaching of this hasn’t come easy for her due to poor motor skills. We are still practicing with the use of visuals and using a hand over her hand technique so she can slowly get the hang of it. We tried flushable wipes as thought they may be a bit easier than just toilet paper but would still end up in a mess. 

Leaving the House

They say it’s not a good idea to confuse with a nappy when toilet training but I must admit on our first few outings out the house I wasn’t that confident. However before long we were going out nappy less armed with a couple of changes of clothes and some wipes. We always made sure she visited the toilet before we left, were sure to know where the toilets were and tried to keep to timings when we were out and about.

Night Time

Isla stayed in pull ups at night until about the age of 10. In the end we had to take the pull ups away and use a brolly sheet on the bed to make any progress.


Isla is in a Satellite Class at school with extra support so has set times to go to the toilet. This still works the best for Isla as if you ask her if she needs the toilet she will always reply “no”. Learning new skills and reaching milestones takes a lot more time with Isla but she manages to master most things in her own way in her own time.

Fidgets and Fiddles: Meeting Sensory Needs

All of us, whether adults or children, whether we have special needs or not, are sensory creatures. We can all have senses that at times are under responsive (hyposensitive), or overly responsive (hypersensitive), meaning that we regularly, often subconsciously, are trying to balance our sensory systems. This can sometimes take the form of sensory seeking, where we are trying to activate our senses in any way possible. How many times have we seen our children swinging their feet or tapping their fingers, twirling their hair, biting their nails, tapping their pencil, or clicking their pen? Maybe some of these are sensory seeking actions that we do as parents too!

Often while out and about or even at home with our children there can be times when they are sensory seeking and this can sometimes lead to them searching for something to help them to regulate their senses. In the absence of anything to support them, they may end up becoming distracted and disengaged, or even find the sensory input they need by using someone else as a fidget/fiddle item!

Providing a range of fidget or fiddle toys can be a really effective part of the resource toolkit for families, offering children and young people safe ways to meet the sensory needs that they have, so let’s have a think about what things you might include in your fiddles box.

Each child or young person will, like all of us, have a favourite item that they will choose from the fiddles box; something that meets their sensory needs and helps them. Having a selection of different items in your fiddles box will ensure that you’ve got something for everyone and if more than one child wants the same thing, well most items are fairly inexpensive so adding more to the box shouldn’t be difficult.

The variety of things to include can be up to each family and their children/young people, but here are a few suggestions (see also the main photo).

Something you can twist; a string of wooden ‘twist and lock’ blocks that can be twisted into 

shapes, or pipe-cleaners can be bent or twisted into spirals and can be excellent for this.

Something you can stretch; stretchy ‘snakes’, or stretchy ‘people’, both work well.

Something you can squish/squeeze; modelling clay or putty is a favourite for this, and is the go-to item for my son James, but a soft mesh ball that you can squeeze is also good, as is a soft cuddly toy.

Something that has a little bit of weight; such as a bean bag or similar. If this is a sensory need that is regularly sought by a child, then a weighted lap pad or weighted blanket might be worth considering.

Something you can click, manipulate etc; the favourite item in this category at the moment is the pop/push sheets that are a bit like bubble wrap (see the rainbow version in the photo). Fidget cubes can be good for this too.

Sometimes children need something to do while they are listening. It can help them to have an activity that uses their hands while they take in what is being said. A craft activity, some colouring, a jigsaw, ideally something that is themed around what they are listening to, all can help them to concentrate and focus. In more general-purpose fiddles boxes, I use an activity book and colouring pencils, or some wooden dominoes, for this.

Lots of other ideas are out there; what would your children find helpful? What you have in your fiddles box might also depend on where you are going to use it; for example, think about whether you need items that are silent in use. Remember to think about safety too, does your child put things in their mouth for example. Also, if you have items in the box that light up, remember that while this might help ‘wake up’ some under responsive sensory systems, it can over stimulate others!

It is important that everyone has the opportunity to choose something from the fiddles box that will help them. It shouldn’t only be available to some children or this risks building resentment. Initially, the excitement of it all might make it a short-term distraction, but things will settle down quite quickly and then having access to the fiddles box will be normalised and will aid concentration and focus. Don’t forget to add extra of any items that are popular!

For more examples of a fiddles/fidget box as well as a video I’ve recorded about them (scroll to the bottom of the page), visit:

I hope you find these tips helpful, and look forward to hearing your stories as you create  your own fiddles/fidget box and use it effectively with your children! Now, where did I put my stretchy snake…


Text and images © 2021, Mark Arnold

The Road Less Travelled

I’m not going to lie, as a parent to a child with disabilities, it is sometimes easier to just stay home. A lot of logistics go into travelling with a medically complex person. Keeping feeding and medicine schedules, packing all the equipment, and just the physical strain that comes with it. Who has ever driven 3 hours on vacation to discover you left your child’s feeding pump at home? This family!

For the past 18 months we have not ventured out a lot, with the exception of therapy and doctor’s appointments. Our daughter is incredibly vulnerable to the threat of Covid, so we have taken social distancing very serious,  but we were all becoming a little stir crazy. I desperately needed a change of scenery. 

We made the decision to go on a little vacation with safety in mind. We found a lodge that was off the beaten path, but had everything we needed to have a good time. As long as there is a pool, our daughter is pretty happy!

There is a lot of preparation that comes with even a weekend trip.

Also, a lot of anxiety. What if I forget something? How will I keep her medicine the right temperature? Will she be comfortable on the drive? I try to keep myself organized with a checklist, but I still always manage to forget something. 

The drive went pretty smoothly, with the help of Cocomelon, but her patience was definitely wearing thin by the end of it. With Cerebral Palsy, muscle discomfort is very common especially when constrained to a car seat. A good stretch was long overdue. 

The location we chose was more on the secluded end of things, which for our needs was perfect. It was so nice to have a little getaway while maintaining the social distancing practices we had become accustomed to in an attempt to keep our daughter as safe as possible. We essentially had the place to ourselves. It was one layer of anxiety we desperately needed lifted.

The trip did not come without challenges.

The trip did not come without challenges. The lodge was not exactly wheelchair friendly. We also attempted a cave tour, but it turns out our toddler is not quite the spelunker we had hoped she would be. That particular activity did not work out, but one thing I have learned is not everything is going to. I used to feel really defeated by things like this, but I’m trying to learn to go with the flow more. We tried something new, and then moved on to a more successful activity.

I don’t expect her to engage with every experience, but I have to give her the opportunity to try. Sometimes you have to put in a little extra effort. Everything will not always work out as anticipated, but that’s okay. You never know unless you try.