Parenting a child with a disability through the teen years

By Fiona Lawton

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.

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.