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What we know now

When Sasha was born, we were essentially told, ‘He has brain injury. You can take him home.’ The advice and guidance we received was limited to non-existant.

The first few months of Sasha’s life were, in all honesty, a complete nightmare. He would cry for ten or eleven hours a day. He never slept. He would scream until he foamed at the mouth if we attempted to put him in a pram or a car seat. He wouldn’t tolerate being put down at all. He breastfed, but it was a constant struggle.

We are certain that if we had known then what we know now, early life with Sasha would have been far more managable. So we would like to share those things which have helped us to stabilise our family and create a routine in the hope that they may be useful to other families who are in the position we were in two years ago.

Kate and Martin.

1. Children with brain injury are easily overstimulated.

When Sasha came home from hospital, we started to put in place all of those things that we knew were good for babies, and that we had wanted to do with our children. Sasha had lots of brightly coloured toys. We played him classical music. We took him to Baby Sensory classes, with singing and lights and sounds. We took him out to give him new experiences. But what we were doing, albeit unintentionally, was overloading Sasha with a mountian of sensory information for him to process. If we could turn back the clock, we would keep things quiet and dark and limit the number of people who came to visit or who held Sasha. Follow your instincts – you know your child best.

2. Children with abnormal muscle tone are difficult to position comfortably.

We had every manner of baby receptacle on the market. A bouncer, a swing, a Bumbo chair, a baby nest, a baby gym, a car seat, a pram (well, several different styles of pram actually!) Sasha hated them all and we couldn’t make any sense of it. We now know that children who have abnormal muscle tone find getting comfortable extremely difficult, and that the position of many of these items was absolutely wrong for Sasha. Many children also experience uncomfrtable muscle spams when they are jogged or bumped, making car or pram travel upsetting. It is worth trying your baby in friends’ seats etc to see if you can find something they like, but unfortunately this may not be the case. With Sasha we simply had to wait it out, carrying him pretty much constantly and holding him in the back of the car until he grew to tolerate different positions. His first happy trip in a car seat was at the age of 15 months, when we bought him a forward facing Maxi Cosi Axiss. He started to sit in a pram around the same time (a Kimba Spring from our wheelchair service) and will now travel in a mainstream buggy.

3. Children with high muscle tone have limited tolerance for cold.

When Sasha was three months old, we started taking him for swimming lessons at our local pool. While the other babies in the class splashed happily, Sasha screamed and extended the whole time he was in the pool. Looking back on this experience makes all of us who were involved feel horribly guilty. The temperature of the pool (28-29 degrees in most pools) made his muscle tone increase, which would have been uncomfortable and unsettling for him. He wore swimming trunks so was completely exposed to the water In addition, the pool was echoey and loud, adding to the discomfort he must have felt. Having learnt more about Sasha, we now take him swimming once a week in the baby pool of  a private gym, where the water temperature is around 31 degrees (a hydrotherapy pool is 34). He has a neoprene wetsuit to keep his body temperature as stable as possible and we limit swim times to around 25 minutes.


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