Parenting through the teen years

Parenting a child is like watching a caterpillar become a butterfly, only for it to metamorphosise again into something more miraculous with each new stage of life.

We watch as our newborns become toddlers, then pre-schoolers. Then with excitement we march them off to school for those heady and glorious primary school years where teachers foster their blossoming personalities while also needing to deal with their challenges in learning and maintaining attention. And then comes puberty and those high school years, where most parents batten down the hatches, seeking to survive the middle teens of hormone changes, grumpiness, social tensions, social media obsessions, introspection and introversion. And after that, the birthing of a new human form, the young adult who transitions out of school and then out of home, keen to spread their wings and explore the world around them.

I’ve lived this experience twice before, watching Ms First Born finish university and become a fully qualified paediatric nurse, and Mr Middle Child Syndrome chase his music passions through a degree and set his sights on production and entertainment, albeit now adjusted by the COVID pandemic.

But my third child is on a different pathway. At 16 years of age we have been learning about parenting the teenage years through the intellectual disability lens. And yes, it is different, but still has echoes of familiarity and a sense that we can do this. And the common factor? Well, it is us – the parents.

Let me be really clear - no one is born ready to parent teenagers! You have to grow through the years of toddler tantrums, constant negotiation with pre-schoolers, and endless parent/ teacher interviews where your child is the ‘delightful but disruptive’ influence.

And parents of kids with disabilities are no different. By the time our loved ones become teenagers, we have survived the shock of diagnosis, and moved through the fog of grief, to generally come out the other side with a determination and drive to make the world a better place for our kids.

And yes we’ve gone through cycles of getting tired and worn out again, juggling the constant early intervention and therapy sessions, while finding that medical appointments are more about how we can contribute to the ‘body of knowledge’ about our child’s rare disease or disability rather than easing our journey and solving our issues. We’ve learned to navigate the social awkwardness of playgrounds, holiday parks, and family gatherings, and have come to terms with the fact that our children will not be spending their weekends flitting from one birthday party or playdate to the next. We’ve grieved and cried and mourned a different life, and have come to rest in some sense of peace of what our life is. And we have grown through the process – in problem solving, planning, juggling, advocacy and – in resilience.

And when life changes again, and it does, we are that bit more ready, more worldly, wiser. We are a little less phased, but also still cautious, and occasionally anxious for what the future holds.

I was in my comfortable place when puberty came knocking at our door for our Number 3 – our special needs child.

“Strap in and hang on for the ride,” said one of my son’s medical specialists when I’d asked what to expect from this next period of life.

And puberty did not arrive quietly

– instead it came with spurts of break-through seizures that appeared to come out of nowhere. It brought with it disturbed sleep patterns, reminiscent of those harrowing toddler years that I recall with numbness attributed to the sleep deprived memory loss. Puberty shook our world in ways that we weren’t ready for because, unlike our other kids, it was different.

The combination of puberty against a backdrop of complex medical needs, intellectual disability and rare disease meant that we couldn’t decipher what was part of the syndrome, and what was part of our son’s metamorphosis. And his complex communication needs meant that we weren’t able to explore with him what he was feeling as you would a typical child – instead we actively modelled ‘feelings’ and ‘somethings wrong’ pages on his communication device, trying to give him the language to help him express how his changing body felt to him.

So, the day that he woke one morning unable to walk without support and unable to explain what was happening was a shock. Literally over one night he experienced a massive loss of function – gross motor was degrading quickly, and his hand tremors came back. As did the migraines or ’sore heads’ that he had been complaining of when he was 12 years old – and following an MRI and ECG, we had put down to the onset of puberty. But here they were again, and our old friend anxiety – the anxiety that we had worked so hard on over the past few years to reduce – came back with a vengeance. It was hard to watch and even harder to navigate as challenging and anxious behaviours began to impact on family, school and his social inclusion.

A typical teenager going through puberty doesn’t just stop walking one day. A typical teenager doesn’t experience profound fear in public places to cause a complete meltdown and acute distress.

With all of the problem solving, planning, juggling, and advocacy skills that we had developed, and resilience that had become a reliable friend, we began the quest to work out what was happening and whether hormones were playing a role in the major change we had seen in our son.

We met with many specialists, including neurology, developmental and general paediatricians and his GP. We had his eyes and ears checked for the balance issues, and his musculoskeletal system investigated for possible pain sources associated with growth spurts.

The results of numerous tests revealed nothing except for an iron deficiency. The medical consensus – impacts of puberty.

So, we changed anti-epileptic medication and increased his exercise regime, engaged closely with a speech therapist and Positive Behaviour Support specialist, and commenced maintenance massage therapy. All geared to improve his proprioceptive response – that is, to improve the coordination between his neurological inputs and his physiological response – and reduce his anxiety.

Essentially, we need to help him start to feel better in his new, blossoming body.

Our boy was transforming from a caterpillar to a butterfly. And it was painful, scary, and filled him with new sensations and emotions that he needed to learn how to navigate.

And slowly – ever so slowly, he started to improve. He learned to walk again on his own without support (most of the time). He started going out in public, and was less anxious in unfamiliar settings, even finding going to live music events and outings enjoyable. He improved his self-regulation, and his expressive communication entered the next level. The seizures stopped.

Our next daunting phase is the transition from school into the wider world.

From page 23

And he slept. After years of a severe sleep disorder, my son finally discovered he loved sleeping! In classic teenager style, he would begrudge getting up on a school morning and was often late for the school bus. And on weekends he would sleep until almost midday and then complain he was starving, demanding French pastries and pancakes for what was now clearly ‘brunch hour’. And it wasn’t the new medication. No, it was clear – as hair was sprouting in various places, and as his voice started to crack and break, our son was going through the various stages of puberty, albeit a slower onset that his typical peers.

And then came the fun stuff (all puns intended) as we started to need to talk about sexuality, privacy, personal space and appropriate boundaries with other people. And I realised, not for the first time on this journey, that this was a different conversation than I’d had with my older children. In fact, it is safe to say that we’d never discussed ‘masturbation in public spaces’ as a family before, but it was priceless seeing the looks on the sibling faces when we did.

Often in life we fear the unknown, the life that is just around the corner that we just can’t see yet. Parents of people with a disability are often haunted by this hungry ghost who lurks in the shadows and plants doubt into our minds. What if this next phase breaks me? What if I am not able to cope?

Having survived the transition through puberty, I know that for us, it was a roller coaster. Our next daunting phase is the transition from school into the wider world. However, right now, I am basking again in that comfortable place, where I see my son living his life as the talented, delightful, and incredibly impressive ‘man-child’ he has become.

By Fiona Lawton

Creating journeys for young people! CPA’s framework of programs is designed to empower young people with a disability, to give them the skills they need to soar – whatever they choose as their next adventure.

Call 1300 888 378 or visit cerebralpalsy.org.au/youth

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Race RUNNING

The innovative sport providing freedom, fun and competition for kids and adults with physical disabilities.

Why walk when you can run? That’s the attitude one seven-year-old is embracing as she steers a course to one day represent the country in the sport.

Sydney’s Emily Hayes is a race running protege who is passionate about the pursuit.

Race running involves a custom-built tricycle without pedals that allows people with impaired balance the ability to move by themselves.

The freedom and flexibility it has given Emily, who has cerebral palsy, can’t be underestimated.

“I love that I can run very fast and run with my friends,” Emily says.

“I can use it at Little Athletics, at the park and at school. Everyone should try

race running, it is so much fun!”

Seeing her daughter shine in the sporting arena is a joy for her mum Kylie, dad Brett and brother Henry, 3, after she had such a challenging start to life.

“When Emily was born she didn't take her first breath for 47mins, suffered four seizures and her heart beat wasn't heard for six minutes,” Kylie recalls.

“Once she was stabilised, Emily was transferred by air ambulance to The Royal Women’s Hospital in Melbourne. They cooled her to 33.5 degrees to help reduce the swelling to her brain and give her the best chance of recovery. This happened for 72 hours, then she was slowly warmed again and didn't have any more seizures.

“An MRI showed damage to an area of her brain which would compromise movement, at this stage we didn't know in what ways it would affect her but the doctors mentioned cerebral palsy.

“Each day Emily showed improvements and after three weeks in hospital we were able to take our baby girl home. Physiotherapy started when Emily was one month old with speech therapy not long after.”

She was diagnosed with cerebral palsy before her first birthday. She uses a walker at school and outside but does sometimes walk on her own – the most

steps she's taken is 290. Emily also uses a wheelchair to avoid fatigue on long journeys.

Kylie says that she’s always amazed at her daughter’s tenacity and courage.

“Emily has always had so much determination; we saw it from a very early age. Her never-give-up attitude has seen her complete 12 blocks of intensive therapy in addition to her weekly therapy,“ Kylie explains.

“These traits have been a big part of her progress and what make us so proud of her.

“Emily is always willing to give things a go and understands that sometimes she just needs to do things a little differently to other people. She almost always has a huge smile on her face too.

“Recently the biggest challenge is the emotional side. 99% of the time she is a very positive person and doesn’t let her cerebral palsy get in her way, but occasionally she expresses how she wants to walk like everyone else. As a parent it’s a hard thing to hear. If her confidence is off it makes everything harder too.”

Emily is at her most confident when she is running, having started Little Athletics when she was 6.

“It was a bit hard in my walker,” Emily admits.

“I had trialled the RaceRunner with

“Dad ran beside me but I was too fast for him! I won a real medal,”

Dejay Medical at my school and I loved it. They came to Little Athletics one weekend and I used a RaceRunner for the whole day. It made things easier and I was able to run faster,” she says.

“It was a special moment when I got my own RaceRunner. My wonderful school principal applied for one and the Blaxland Local Schools Community Fund funded it. It was a very exciting day when I got it. They didn’t tell me it had arrived and surprised me in the office.”

Since then, Emily hasn’t looked back.

“In February I got to run in a race. It was called the BBB Run and I ran 500m in my RaceRunner. Dad ran beside me but I was too fast for him! I won a real medal,” she proudly recalls. "Little Athletics will be starting again soon so I am looking forward to that. I hope I can run in another race soon. One day I would like to run for Australia.”

Emily is a strong advocate for the sport and encourages people to access “come and try” days, which can be booked through www.racerunning.org or via Dejay Medical, an Australian-owned family business, now managed by the second generation of the Mason family.

The family has been helping families in need of equipment for over 30 years, to improve their quality of life and achieve their goals.

Dejay has offices in Sydney, Melbourne and Brisbane and more than 30 partners throughout Australia and New Zealand, and RaceRunners form part of the business’s selected rehabilitation and mobility equipment range.

“We are the only stockist of the RaceRunner in Australia and after we launched in late 2018 we have sold hundreds, which is a lot considering it is a new sport so it is great to see lots of clubs getting involved with it which is very exciting,” Dejay spokesman Steve Andrew says.

Steve says Dejay is proud to be a founding partner of Race Running Australia and says it’s a great sport to be involved with.

“We are working together to grow the sport in Australia, and we are also working with partners in New Zealand to kick off the sport there,” Steve says.

“We offer a free trial service with you and your therapist where we measure and fit a RaceRunner to suit your needs.

“Our team has been trained by Connie Hansen herself (see breakout) when she visited Australia in 2018.

“We will visit your therapist, school or home to trial a range of sizes and supports to ensure you can get the most out your bike.”

By Rachel Williams

the facts

• Race Running is an international disability athletics sport started in Denmark in 1991 for age groups from 3-73. It is a CPISRA and WPA sport with events ranging from 40m to 3000m and even marathons.

• A RaceRunner is a custom built three-wheeled frame where the runner is fully supported by a saddle and leans against a chest support, propelling themselves forward by the feet (one or both), while using the hands and/or arms to steer.

• A RaceRunner frame is a very effective way of improving overall fitness, strength and well-being. The first RaceRunner was constructed in Denmark in 1991 by Connie Hansen, a Danish Paralympian who competed in 1984, 1988 and 1992, and won a total of nine gold medals, four silvers, and one bronze. She was inducted to the Paralympic Hall of Fame in 2008.

• RaceRunning will be showcased as a Paralympic sport for the first time at the 2024 Para Olympic Games in Paris.

Sensory Processing Disorder the Ultimate Guide

Everything you need to know to understand SPD

Can you imagine how it would feel if every sight, sound and touch were unbearably intense? Or if those senses were greatly diminished?

The sensory systems are vital for knowing what’s happening in our bodies and interacting with each other and our environment.

Many people take their senses for granted. But some children (and adults) have a disorder affecting the nervous system that impacts the normal processing of sensory information.

If you’re reading this guide, it’s likely you have a child with a sensory processing issue (or perhaps have sensory concerns yourself). If so, you’re not alone. Be assured that sensory disorders are relatively common, and help is available.

What is sensory processing? Sensory processing is a term describing how we interpret (or ‘process’) information we receive through our senses. The ability to receive and organise this information is vital for

T H E R E A R E E I G H T S E N S O R Y SYSTEMS:

1. Visual (sight) – received through our eyes, and interpreted as things like colour, brightness, shape and movement

2. Auditory

(hearing) – our ears receive sound waves and we process them as different frequencies and volumes

3. Olfactory (smell)

– the odours sensed through the nose 4. Gustatory (taste) – such as sweet, savoury and salty

5. Tactile (touch)

– what we feel with our skin, such as whether things are rough, smooth, cold or hot

6. Vestibular

(balance) – the sense of where our heads and bodies are in space and control of eye movements

7. Proprioceptive (joint position

sense) – the sensation of joint and muscle movements and postural control

8. Interoception

(internal sensing) – the feelings inside our bodies, such as hunger, thirst, and butterflies in the stomach healthy function of the mind and body.

Each sensory system sends information to the central nervous system (the spinal cord and brain), enabling us to function effectively and safely.

What is Sensory Processing Disorder? Sensory processing disorder (SPD) is a condition affecting the brain’s ability to receive and respond to sensory information. This causes a misinterpretation of sensory input that leads to altered function.

Under normal circumstances, the nervous system smoothly receives and interprets signals from within the body and from the outside world. The nervous system uses this information to send out other signals. For example, if you receive a signal that you’re touching something extremely hot, it triggers a signal to remove your hand. These signals are important for learning, memory, behaviour, emotions, movement and coordination. A breakdown within the system affects your ability to function.

Signs and symptoms of sensory processing disorder in children People with SPD fall into one of two categories: 1. Hypersensitive (over-reactive): these people will be unusually sensitive to sensory input. For example, lights may seem unbearably bright, common sounds may be painful, or clothing labels cause extreme irritation on the skin. 2. Hyposensitive (under-reactive): these people are less sensitive to sensory inputs. They may seem to have a high tolerance to temperature or pain or seek out sensory experiences. For example, they might repeatedly sniff their food, rub things against their skin, or perform certain movements.

If your child seems either excessively sensitive to sensory inputs, or seeks out sensory experiences, it could indicate they have sensory processing disorder.

Like most disorders, sensory processing disorder symptoms occur on a spectrum.

Other signs your child could have a sensory processing issue include: • Lack of coordination or bumping into things • Slow development of fine and/or gross motor skills • Seeming lethargic or disinterested

• Having difficulty knowing where they are in space • Strong emotional reactions to “normal” stimuli • Difficulty regulating their emotions or behaviour • Having “meltdowns” or temper tantrums • Difficulty communicating or engaging in play • Difficulty handling change • Poor attention or concentration, being easily distracted • Fussy eating or distress while feeding • Seeking constant movement e.g. spinning, jumping, running • Disliking/avoiding moving play equipment e.g. swings • Difficulty following instructions at home or school • Poor planning, sequencing or organisational skills

The symptoms of sensory processing disorder overlap with those of other disorders. For example, children with attention deficit hyperactivity disorder may display similar behaviours to children seeking sensory stimuli. Children with autism spectrum disorder (ASD) and other developmental conditions often have sensory processing difficulties.

To make sure your child gets the right diagnosis and support, it’s important they’re assessed by a qualified health professional.

How is sensory processing disorder diagnosed? While many children have sensory issues sometimes, sensory processing disorder might be suspected when symptoms are affecting normal function or causing difficulties with everyday life.

An assessment will usually involve taking a history about your child’s development, such as how things went with pregnancy, birth and reaching developmental milestones like crawling, walking and talking. They’ll want to know when you first noticed your child’s issues and how they impact daily life.

The occupational therapist will also assess your child’s function. They might check how your child reacts to certain sensory stimuli or watch how your child plays and interacts with their surroundings. They may use assessments such as the Sensory Profile or the Sensory Processing Measure.

After the assessment, they’ll discuss their findings with you and suggest a management strategy.

Signs that could indicate it’s time to seek professional help for your child include: • when behaviours are interrupting everyday life, • if symptoms suddenly become worse, or • when their reactions to sensory inputs are too hard to manage at home or school.

This guide is brought to you by Growing Early Minds. For more info on how they can support your child and family visit growingearlyminds.org.au or call 02 9622 8500