Simplify your life - How we survive with a child with Sensory Processing Disorder (hint, it is actually easy)

We have been blessed with two beautiful daughters. Two unique, utterly gorgeous little girls. The first, A1, is now 3 years and 9 months and the second, A2, is 1 year and 8 months old. So both are girls, both have birthdays at the beginning of the year (try end Jan and beginning Feb), and both have blue eyes. Both are extremely stubborn! And that is about where the similarities end. Although we followed the same recipe, with the same ingredients, the two could be no more different. From their first breath, things were different. A1 came out crying, at the top of her lungs. And she didn’t stop for at least the first 18months of her life. A2 came out sleeping. Very chilled. A1 was a very bad sleeper. Read that with an ominous voice – a very bad sleeper. She didn’t go for longer than 20min stretches at night, and during the day we were happy with an hour here and an hour there. A2 is a champ of a sleeper. A1 was a floppy baby. Although she had superb neck strength, that is about where it ended. Her core was very weak and we struggled to get it developed. Yes, we did loads of tummy time. A2 came out strong as an ox. A1 was slow to reach some of the major milestones, such as rolling, grabbing, and sitting. Some of them she never reached, like cruising (when baby walks along a couch or something that supports her before she can actually walk by herself). A2 sat at 5 months, rolled before that and started grabbing just under 3 months. She started to crawl at 7 months and could run by 13 months. A1 was a crying baby. I cannot emphasise that enough. Some days we wanted to cry with her. Some days I could understand how parents could shake babies… I am putting this out there so that other Moms who struggle with the same will feel like less of a failure, and more of a victor – for the first about 3 months I wanted to give her away. We didn’t bond at all. This was an extremely trying time, one that I will gladly have over if I only know then what I know now. I loved her, but I did not yet realise how much I loved her. My heart aches when I think of her, and I never ever ever want a life without her in it. So back to the two girls. A1 was a crying baby. A2 only cried when there was seriously fault. She wined and fussed, but very rarely cried.

And now we reach the reason for this post – the reason behind the crying. We tried to find out, going from our paediatrician to our GP, even to a sister who specialised in breastfeeding and sleep training. All of them offered possible reasons for her crying, but nothing definite, with no solutions. The reasons ranged from colic to me being too stressed, changing my diet (I breastfed) to drinking meds to increase my milk supply and uplift my mood, from not having a routine to sleeping too much in the day (hahaha). We tried everything – special colic drops, putting her (or trying to) in a strict routine, spacing her naps to keep them short, sitting in the late mid-day sun for that extra shot of Vit D. Nothing helped. Still, she cried. Cried when she was changed, when we had to move her from the house to the car, the car to the shops, shops to the house. Cried in the bath, when she was dressed. When her face had to be cleaned when she had to wear socks, when the dog licked her. Of course, the crying interfered with her sleeping. What to me was a red light was the fact that she never cried herself out. If you didn’t jump in and console her she could go on for hours. Other babies stopped after some time or even cried themselves to sleep. Not A1. There was no stopping her. It also seemed like she needed physical reassurance in order to calm down, and movement and loud music was two of the best ways to do that. Sleep time was a battlefield. Night after night we would go with no sleep. After a few nights of no sleeping, she would be so exhausted that she would stand in front of me, crying, with her eyes closed. It seemed as if she was begging me to help her sleep because she just couldn’t do it herself. This was heartbreaking. We drove around night after night, sleeping in the idling car (the moment the car stopped she would wake up). Some nights we just gave up and would take turns sitting with her while she played. I was worried about the lack of sleep’s effect on her development. She was also a fussy eater, not liking anything that is mushy (still won’t eat it), but loving anything with a strong, spicy, salty, or even acidic taste. She would go for days without food, and then eat everything in sight for a day or two, just to stop again for some time. For a first-time parent, you kind of feel like you yourself is spinning out of control! Somewhere in the midst of these struggles, by coincidence, I met a wonderful Occupational Therapist (OT) who advised that I take A1 for observation.

The OT determined that A1 had some sensory issues, a mild form of Sensory Processing Disorder (SPD). Sensory processing is how we transform sensory information from within our own bodies and the external environment into messages we can then act on. It is our senses (touch, sight, sound, movement, body awareness, taste, and smell) that work together to give us a reliable picture of the world and our place in it. Right now your senses are working together. You hear background sounds and feel your clothing, chair, and the floor beneath your feet. You resist gravity to stay seated. You see letters on the screen. You filter out unimportant sensory input so you can make sense of what you are reading. For someone with SPD, they might lose focus because their shirt label is itchy. They might keep sliding off the chair, look away when they hear any noise, feel like their shirt is hurting them, or as if the words on the screen are pulsating. These are only some examples of how the brain misinterprets or misjudges the sensory inputs in these individuals. All of a sudden A1 made sense. Why she hated walking barefoot. Certain clothes she refused to wear (I guess they were too scratchy or tight or something). Her fussiness when it came to food. Her refusal to get her hands dirty, or to play with anything that had a slimy texture. And her inability to shut out the world, calm herself down, and fall asleep.

Although mild, SPD can have a very negative effect on your life if you are not taught how to control and manage it. Kids with SPD can very easily be labelled as a bully – most of them have poor proprioception skills, meaning they struggle to ascertain where their body is in relation to the space around them. So, according to them, they will only pat you on the back, but in actual fact, they pushed you off of the stairs. A1 can be categorised as a sensory seeker, i.e. her body reads sensory signals as very weak; she is continuously busy searching for bigger, better, louder, faster. Eventually, her system catches up and she becomes overstimulated and unable to calm down. If not helped, it can lead to a full-blown sensory meltdown. She processes her surroundings through her mouth – that is why everything goes to her mouth first. The jaw is one of our biggest sensory “givers” and is an invaluable weapon for someone with SPD. For A1 we realised giving her something crunchy or chewy calmed her down – the amount of sensory feedback that she received fed her system and kept her grounded. This is also why so many SPD kids are biters. She has a very high pain threshold, and would sometimes hurt herself without even realising it. She also has no idea of danger and would jump off chairs and stairs without someone being there to catch her. Especially when her system was in over-drive.

She was put on a sensory diet, consisting of things like using a sippy cup to drink (sucking), movement (rocking chair and swing), deep pressure (bear hugs, rolling her up tightly in a blanket), etc. and we also started brushing her (Wilbarger Protocol) and completely changed her diet. Within a very short time, we had a different child. She could sleep at night (naps were still only sometimes – turns out she really doesn’t need a lot of sleep!), and function better during the day. We still get setbacks, especially when things have changed in our lives or routines. She doesn’t handle change very well, not even small changes like her cereal. And you have to warn her whenever she will be expected to transition from one thing to the next, i.e. “we will bath in 10min”, etc. Clothes are still a mission, but it is easier now knowing what most likely will or won’t work. And at least now we know how to handle the crying (which has all but stopped).

I love A1. She and her sister are my whole world and everything in it. I thank God every single day for both of them, and then I thank him a bit more for A1. Her joy for life, her energy, her radiant smile. She is like an energiser bunny – she never stops. She sings and dances, and loves entertaining. She is smart and caring and loving, and she gives the best hugs. So many of these things are because of the SPD, and other as a result of it. We don’t see it as a disorder; it is a part of her personality, and as long as we teach her strong coping skills it will never rule her. She has taught me so much about life, love, and grace. And a lot about forgiveness.