Normalising Disability

My little girl, J is a funny girl sometimes. Recently, when we took C to his physio session at the hospital, we had to share the room with another therapist and patient. J loves these ‘go Doctor’ sessions, as she calls them – there’s lots of cool toys, and she usually has Mummy running around after her while C ‘plays’ with the therapist. This time, she spent her time watching the other patient – a teenage girl with motor problems – grab toys from one location and crawl to another to put it in a circle. Suddenly J wasn’t next to me, but had raced forward to join the other girl – grabbing toys and putting them in the circle. I quickly sped forward and scooped her up, exclaiming,
‘I know it looks like a lot of fun, but it’s the big girl’s turn now.’

The other girl and therapist laughed and J went back to playing with her toys and copying and bugging her brother.

It was only after the session that it hit me. This is J’s normal. She has spent her life going in and out of doctors’, therapists’, and specialists’ waiting rooms. It’s been like that from the very beginning, even in the womb.

J’s old helmet

When I was pregnant with J, my other half and I had grand plans of a quick hospital visit – one day, midwife only, then back home. This pretty bubble was popped at 20 weeks, when the ultrasound came back with the news that she had three holes in her heart. Being confronted by multiple specialists – a paediatric cardiologist, specialists in genetic disorders, more ultrasonographers all at once – is quite the experience. All of them recommended amniocentesis – a somewhat invasive procedure to check if she would be born with any congenital defects – but there was a small risk of losing her – so we didn’t test. As I said to a friend at the time, ‘However she is born, she is ours and we will love her.’

One of the consequences of this, was that when she was born, we wouldn’t know if she would need to be whisked away to open heart surgery or not, or what other problems might emerge.

She was born big and healthy – thank goodness! But I’m O negative – and she’s not. She developed severe jaundice – and instead of getting to cuddle my girl in the hospital, she was put in a separate room under a heat lamp. I was only able to feed her for 20mins every 2 hours. Then it was pumping milk while DH fed her from a syringe. We were lucky, and they were able to move the heat-lamps into our room. I think the nurses took pity on us, watching us taking turns sitting up with our little girl.

A quick one day trip turned into three. Then it was back home – to constant nurse visits. Little J’s heels went purple from all the blood samples taken – and she got used to feeding while nurses took samples. After a few days, she didn’t even react much to the pain.

C’s old shoes to wear over leg-casts

Throughout all this, we were doing at least once a fortnight visits for C’s therapy – physiotherapists, podiatrists, neurologists, or the rather confronting specialist paediatric clinic at the hospital – where we were probably going to have at least 5 specialists prodding and testing poor C – he’s learned to be very patient. (Though I must admit, their waiting room is rather fun, as they have playdoh, art and crafts, puzzles and noisy toys for the kids, all supervised by a play therapist.)

Then it was on to the cardiologist for J – thankfully, she remained a healthy girl, and the holes healed themselves by her first birthday. But there was still her physio, as she had neck problems that lead to plagiocephaly – and helmets for at least 3+ months of her life. She learned to crawl and walk with a helmet on. Which might have something to do with her dare-devil personality!

Then just as the physiotherapists decided to have a break, C was diagnosed with SPD, and J with anxiety disorder. So, back to regular doctors visits, twice fortnightly.

And before we knew it, it was back again to the physio, podiatrists, audiologists and neurologists for C; as well as injections under general anaesthetic for his toe-walking. At least the gas was strawberry flavour!

Through all this, it has been over two years of at least one specialist appointment a month – usually at least one a fortnight, but at times becoming as frequent as twice weekly. (We’ve even had one memorable day of double appointments at opposite ends of the city.)

My two little ones have become acclimatised to seeing kids in leg braces or wearing helmets; in wheelchairs; or unable to speak. They’re used to watching and dealing with kids who have problems regulating emotions: meltdowns; tantrums; kids with super-sensitivities. They’re used to conversations where Mummy calmly explains that the little girl or boy has epilepsy, cerebral palsy, autism, or hip dysplasia, so things in their body or brain don’t work quite like other kids. They’re used to seeing adults in hospital beds covered in wires and tubes being wheeled passed their waiting room. Or having conversations with adults who have intellectual handicaps.

And that is a good thing. Because for my kids, disability is normal. People are just people – it’s just sometimes, they need a little more help. For them, these kids are just potential playmates or friends. And a waiting room is just another playground.

Play time and dress ups