A step in the right direction

An old saying that has resonated with me time and again is “One step forward, two steps back.” Progress, when you have a child with complex special needs, is something you strive for.

It’s truly magical when you see your child’s hard work paying off. Steps forward need not be giant leaps…we celebrate them as they come, and we’re grateful to witness even the smallest strides in growth.

As excited and fulfilled as I am when my daughter has a breakthrough in development, I can’t help but worry about potential setbacks. They tend to come along and knock us back when we least expect them.

In my eighth month of pregnancy, I was given grim news.

A perfectly typical pregnancy drastically changed into weeks of worry and fear from one ultrasound.

Afraid that my unborn daughter’s anomalies could take her from us, before we even had the chance to hold her, my life was quickly spiralling backwards. When she arrived safely into the world, full of breath and life, thankfully, we leapt forward.

Despite weeks in NICU and very slow and steady weight gain, we were forging ahead. I was beginning to feel that we had jumped a major hurdle and were on the home stretch.

Then, out of the blue, a phone call delivering the news of a rare genetic disorder caused me to stumble.

Before ever laying eyes on her, I knew that my daughter was a fighter and a miracle. Knowing her genetic disorder and brain structure put her at risk for seizures, she had her first EEG performed at nine months old.

The electrical activity in her brain was normal, and there was no need for anti-epileptic medication. We were victorious. However, to our heart breaking dismay, that victory was short-lived.

One month later, she had her first terrifying tonic/clonic seizure. My world stood still.

After an ambulance ride, a hospital stay, new medications, and a whole new world of fear, I felt that we were again moving backwards.

Today, she’s currently eight months seizure free.

Even though this is a monumental win in our ongoing Epilepsy fight, the constant worry is always there. We steady ourselves and hope to continue moving onward, with unwavering steps.

After major reconstructive hip surgery, years of intense physical therapy and countless hours of practice at school, my daughter learned to walk with a walker!

With the proper orthotics, we knew these mighty steps of hers were giving her some much loved independence.

Over time, her right foot began to turn inward. Walking is much harder when one of your feet is uncooperative; it takes extra effort and exertion on her part to correct it.

We are determined to figure out the root cause and to fix it. Motion analysis testing is in her near future. This step backward, and any treatment that is needed, will not bring her to a halt. Since her birth, almost nine years ago, our family has become STRONG.

She has taught us that lying down and giving up are never an option.

She has persevered through storms that most people can’t begin to imagine; always with a bright smile on her beautiful face.

When things get tough and we’re knocked back a few steps, we simply have to catch our breath and push on.

I’ve gained strength that I never thought possible, because of my daughter.

When she entered our lives, we didn’t know it yet, but we’d all soon take a step in the right direction. We’ve learned that we’re all capable of so much more than anyone can predict.

Our hearts are forever changed because of her, for the better.

We’ll keep handling all the stumbling blocks that may fall onto our path.

Although it may take us twice as long to get there, the view will be breath taking as we travel on this journey together.

What’s your child’s learning style?

This information will be relevant to every teacher, therapist or caretaker that you and your child will meet.

You know your child best, so share this information with every professional that will spend time with your child in order to maximize the fun and learning opportunities while they’re together.

As a physiotherapist, it’s integral for me to identify which learning style will motivate your child to explore their environment and participate in their education.

Most learning styles will fall into one of these categories: kinesthetic (learn by movement), auditory (listening), or visual (observing).

Under no circumstance would I say that any child fits into any one category, but there are certain principals that apply to all kids:

Active learning is best. Your child should actively be vocalizing, singing, moving their body (head, hands or legs), pointing (reaching or gazing) to show that they are enthused by an activity.

Remember, learning for your child is more than learning. Learning can teach your child their ABC’s and colors, but eventually lead to practical life skills.

Children are generally more available to participate when they know the plan and the expected outcome for any activity.

It will benefit your child most if you can identify the best way to reinforce positive behaviors, and ignore those that are not desired. Behaviors that are celebrated will be reinforced and those that don’t elicit positive reinforcement will hopefully fade over time.

Some terms that you can use are: ‘When you’re all done please show me or tell me by _____’, or ‘One more then we’re all done’ or ‘First we’ll do ____ , then ____’ or ‘I know this is hard, but I know you can do this’, or ‘If you want this ____(show me, tell me)’…

Pegs, puzzles or large coins in a piggy bank can function as a precursor to hold a fork, pen, or musical instrument. These types of activities can also benefit other fine motor activities such as self-care (feeding and dressing), hand eye coordination, and if needed, augmentative communication devices.

Sorting and matching can be used to teach counting, colors, quantity, and concepts such as in/out/on/off/up/down. As the child becomes more active, this skill can contribute to a child’s ability to participate in management and sorting their own belongings in their room, or maybe one day in the future, a job.

I celebrate all active movement. It doesn’t have to look perfect or coordinated.

Active movement of any sort-rolling, creeping, crawling, walking, running, dancing, moving in a walker, riding a bike or swimming.

Think of the independence and sense of accomplishment one feels when one can explore their environment and discover something, feel something or share a thought about something. In addition, active movements contributes to bowel and bladder function, bone health, skin integrity, vision, body proprioception and awareness, strength, socializing, and IT’S FUN!

Find a way to make movement possible for your child to let them learn (on land or water). Sensory bottles and sensory mats are a great motivators for the younger ones.

You’re the best teacher your child will ever have. You are also the best person to identify your child’s best style of learning because you know them best.

We all learn to know, we all learn to do. Your child’s learning will increase their personality traits, their knowledge, their thoughts, their independence, their fun.

Their learning will contribute to who they will be.

Dear Teacher

Dear Teacher,

It’s the start of a new school year for my son, year 3 of primary school.

The uniforms are spotless, the shoes are polished, the pencils all sharpened and the bags packed.

Everything is new, everything is shiny, there’s excitement in the air, expectations of what this new school year will bring.

The parents are all smiling at the school gates; we’ve all survived the summer. We’re all looking forward to the few hours of quiet where we won’t hear “Mum, Mum, MUM!!” We’re all so proud of our little people.

But as I watch my little guy wander through the jungle of the playground my heart is in turmoil.

You see, he’s spent all summer safe and sheltered from this world he finds hard to fit into.

At first he struggled to adapt to the holidays – he spent the first few weeks trying to emulate the school routine.

We watched number jacks on repeat, he solved pages of maths problems, and he gave himself break time.

While everyone else was sleeping in and enjoying lazy mornings my son was up at the “normal” school time and so we had hours and hours to try and fill with activities.

The change in routine caused mayhem in his world.

Finally, he accepted the holidays and spent the next few weeks lining up cars, learning the capital cities of the world and reciting facts he’d memorised about space.

We went lots of walks and bike rides where we counted our steps and tried to beat our records. We didn’t have any play dates – he preferred his own company and why would he see school friends when it wasn’t school time??

The summer days were tough for us both; we were both exhausted mentally and physically, there were meltdowns, there were tears from us both, there was screaming, there were more meltdowns and then more tears from us both. But there were also laughs and fun and happiness that we were at home together.

Then we had to prepare to come back to school.

We went over every detail, we done social stories; we spoke about the new class and the new things he might learn.

He was up during the night worrying and again mayhem was in his world.

There were some days, actually a lot of days where I couldn’t wait for the return to school but today my heart hurt when I had to say goodbye.

He’ll be with you, teacher, for 6 hours a day – will he be safe in the class? Will you know that he needs help with his jacket? Will you help him change at gym time? Will you help him eat in the busy dinner hall? Will you translate all the unseen bits of information that he will miss every day? I worry that his quirks won’t be accepted; I worry that others will find him weird. I worry that he won’t eat enough because he’s so anxious.

I worry that he won’t be able to communicate when he needs help. I worry that he will get lost in the classroom.

As difficult as the holidays were for us it still breaks me to leave my son at school.

So dear teacher, I hope you understand when I message you more than most or when I ask for a quick chat all I want for my son this year is for him to be happy, accepted and free to be the brilliant boy he is.