My middle child Sienna has always been a little bit different, right from the word go. As a baby we struggled to hold her without screaming and she refused to be swaddled.
She hated to be breastfed, and at first I thought it was purely because of her reflux, but once she moved onto bottles she enjoyed laying on a rug alone, with a bottle propped up in her mouth. She simply refused to feed if you held her and as she grew, even more signs that something was different began to arise.
- She had a ridiculous amount of injuries caused by a combination clumsiness and dare-devil type stunts – dislocated wrists and elbows, stitches to her forehead and eye, concussions and black eyes, the list goes on!
- She hardly slept and the times we did get her to sleep were due to hours and hours of back rubs and negotiations.
- We would wake at 2 or 3 in the morning sometimes to find her bouncing on the lounge or standing on our dining table in the dark alone.
- We couldn’t dress her without a fight.
- She started to play with and eat her own poo.
- Getting a head-butt to the nose, bitten or kicked was not unusual for us.
- Her tantrums would last for hours and she was known to smash her head into the wall and floor on purpose.
Sensory Processing Disorder “SPD” is a medical condition where the brain doesn’t receive or transmit sensory information in the way that a typical person’s brain should.
People with Sensory Processing Disorder can find themselves having trouble with smells, sights, sounds, tastes and textures as well as issues with proprioceptive (movement) and vestibular (balance) senses. These sensory issues can be so large in number or extreme in nature that they have the ability to stop people with SPD from living their daily lives.
Those with SPD have their own little sensory quirks and oddities too. My mother cuts the tags off her clothing, my husband will lock himself away in complete silence in order to get his work done and I sleep best with the TV on for background noise.
As adults we are capable of regulating ourselves and changing the environment around us to suit these little preferences, however kids with Sensory Processing Disorder have no ability to regulate the way in which they respond to sensory input or stimulus.
SPD children can have behavioural problems, anxiety issues, clumsiness, depression and numerous other issues as a result of their inability to cope with the outside world or feel as though they ‘fit in’.
When my youngest was born I really started to notice the differences in Sienna. As he grew I reflected back and saw how similar he and my eldest were and how much more in tune with them I seemed to be. They had their normal baby issues, but they were nothing compared to the whirlwind I had been raising (and struggling with) for the last 2 years.
Of course, over the previous years I had attempted to reach out for help. I had tried to connect with two different, and very busy midwives. I had called Ngala and been referred back to those same busy midwives who’d had no time for me before. I had been to GPs and spoken to other Mums and anyone else who would listen to me. The GPs saw her and chanted ADHD at me repeatedly, but the more I looked into it the more I thought it didn’t quite fit. Then, one day someone mentioned something about Sensory Processing Disorder so I looked it up when I got home and it just clicked. It was Sienna. This was my baby girl all over. And so, I set about getting her diagnosed.
Two years later and here we are. We have found a paediatrician we love, we have seen a few OTs, some physios, some other professionals and picked up some skills ourselves along the way.
At 4 years of age, Sienna is now able to verbalise when something is bothering her. Now she can vocalise her feelings and needs has really changed the game for us as previously we were stuck guessing what was bothering her and why.
The biggest issues we have these days are in crowded public spaces. Loud noises, bright lights, visually stimulating environments are all huge NO-NOs for her. The local shopping centre, the royal show, airplanes, trains, buses, circuses, the cinema, video game arcades, the local market, even the doctors surgery waiting room are all hell on earth for this poor little girl. We of course have two other children and hectic lives which make it almost impossible to constantly avoid taking Sienna places like this.
The key to being able to do attempt to live a ‘normal’ life is to recognise the triggers … to be aware of what could happen and to make allowances for it. For example:
- If we know there will be loud noises where we’re at, we’ll give her headphones with her own music on them.
- If we know there will be huge crowds, I might distract her with the iPad or sometimes let her sit in her brothers pram with the hood pulled down in her own little cocoon.
- Bright lights get a broad brimmed hat and sunglasses, and
- If we need to do some shopping I will pop a weighted backpack on her for some deep pressure and bring a pile of different textured snacks to keep her busy in the trolley.
- Kids yoga in the evenings is the perfect way to wind down and a backrub and a bedtime story are the best ways of getting her to sleep.
- On the way to and from any activity we have a chat about where we are headed and what will be happening there. What we can expect once we arrive and what the plans are for the day.
- We try to work in some of the OT’s stretches and exercises throughout the day when we notice they are needed.
- Generally a half hour of “good” behaviour is when things start to turn and we need to make a change.
Of course, it’s not always so easy to be prepared and stay calm when you need to get things done. Some days are a complete failure and you just have to pull yourself together at the end of it and think that tomorrow will be better. The days that are just so horrible that I want to curl up in a ball and cry, I try to remember that it’s harder for her.
I try to imagine what it must feel like to be inside her poor little brain and to be on alert all the time. To be on edge and feel in danger from the slightest amount of sensory stimulation. Things we wouldn’t even notice drive her absolutely crazy –
- The hum from the heater in winter.
- The sound of the dishwasher as it starts its cycle.
- That one light that is that little bit too bright.
Any of these things could prompt a meltdown at any moment. It’s exhausting and it’s tough but you are not alone and you are doing your best, and THAT is what will get your baby through the toughest days in their lives.