Is it just me, or do you sometimes feel like your child collects medical professionals like most kids collect rocks?! Sam seems to have a ridiculous number of people who are each involved in his care/management in some way but our relationship with them extends to little more than meeting a few times a year to discuss things.
Sam was granted physiotherapy on the NHS for all of 12 months; once a fortnight. The reality being, that if PT was going to strengthen his muscles and keep his joints supple and mobile, this would be something he needed *daily*. Que the parents struggling to squeeze in one more round of therapy before school/tea/bedtime. Why can’t therapy be more FUN??
Those who know me know that I am passionate about one particular therapy. Snowdrop is different to other therapies; it is based strongly in scientific research, although at time the methods seem a bit, well, bonkers! But first, some history… When Sam was around 14 months old he was virtually catatonic. The seizures plus the powerful drugs used to try and control them were taking their toll and our boy could barely lift his head off the floor let alone don anything else. Things were bleak and like most if not all SN mums I spent an alarming amount of time researching therapies, treatments, etc. ANYTHING that might help my boy, I looked into.
But I’m lucky, I’ve got insider knowledge… I’m a scientist working in healthcare, so could identify which therapies were worth looking into which others were, well, not. So, I trawled the scientific literature endlessly. Then out of the blue, someone on another support group asked if anyone had tried the Snowdrop method… type type type into Google… and there it was. Snowdrop for brain injured children.
As I read I could feel myself getting excited – the therapy is based on what we have known for many decades; the brain doesn’t stop developing when we’re born but continues to form new connections between neurones and reinforce connections that are used repeatedly. The posh term is neuroplasticity and it’s how we learn. So all the people telling parents that a child’s brain was damaged/malformed therefore they would never develop were inherently WRONG.
An email was sent off to Snowdrop that evening. And in the morning, a reply! At this time we had no idea why Sams brain was misfiring so spectacularly; all we knew was that his prognosis was gruesome; lifelong seizures, severe learning disability, likely autism, severe visual and auditory impairment due to seizure activity. What did we have to lose?! So, when Sam was 18 months old we packed the car and drove down to the other end of the UK to Devon, to meet with the founder of Snowdrop, Andrew and his wife Janet.
That first meeting changed everything.
You know that horrible feeling when you go into an appointment with your child, they’re poked and prodded, lots of tuts are made, then the Dr proclaims that there is little/no hope or that the issues aren’t treatable? Now imagine the opposite. Andrew watched Sam, intently from the moment we entered the room. He assessed Sam as a child, not a collection of symptoms, and watched everything he did, how he responded to different stimuli and people. He explained everything as he went along.
Eventually, he sat down with us and explained that our little guy wasn’t sensing the world as he should be – he could barely feel anything on his arms yet his feet were exceptionally sensitive to touch, to the point that it could be painful for him. He was displaying a lot of newborn-type reflexes and was hypersensitive to sound in the range of the human voice – he literally switched off when we talked to him as it was uncomfortable for him to listen.
Andrew was excited by Sams potential and couldn’t wait to get started working with him – most therapist were doom and gloom, this was entirely new to us! We left that meeting exciting and for the first time since the Sams nightmare began, we had hope for his future. We’ve now been following the Snowdrop program for over 2 years.
In that time the following has happened; Sam has regained purposeful vision (something the opthalmology team couldn’t believe until they saw it for themselves), his hearing has pretty much normalised and he understand basic instructions; his tactile sensitivities have completely gone and he now feels the world as he should do. He is no longer a catatonic child, unable to coordinate the simplest of movements – he has finally gained head control! He can roll over, both ways, can kick, pull and push. He is learning to sit up and develop a sit balance. He is trying to stand. Far from being non-interactive, he is a monkey who loves to play with Mummy and Daddy, and who thinks the cats tail is the best toy in the world. Ever. His eyes sparkle now as he realises how much world there is to discover… his neurologists eyes filled up when he saw Sam playing with his Dad, giggling like a loon as Daddy tickled him. This man has been with us since the very start of the seizure Hell, and knew how horrifying the prognosis could be, in his words he was watching a miracle take place.
Snowdrop is not a cure all, nor a guarantee of success.
We simply don’t understand enough about the brain, and there will always be children who don’t respond or do so more slowly that we’d hope. What it IS is a way that we as parents can harness our childs natural abilities to remould the brain and work around damage/problem areas. Sam can’t crawl, but he’s worked out how to wriggle his way across the floor to where he wants to go. It isn’t exactly coordinated yet, but its coming.
Andrew and Jan have had first hand experience of SN; the charity was set up as a legacy to their eldest son Daniel who passed away in his teens as a result of devastating brain injuries sustained at birth. They have an empathy with SN parents, and understand how desperate we can be to help our children; each childs program of activities is designed for THEM and involves stimulating the areas of the brain which are not functioning as they should be. It is a case of repetition to form new brain pathways, like learning to play an instrument… the more you practice, the better you become.
In the same way, we aim to do Sams entire series of exercises 4 times every day; each exercise takes a few minutes only and can be fitted in around our other activities.. although it took a while to get into the swing of things, its now second nature to do a couple of bits in the morning before school, then another couple when he comes home again. He has a therapy CD to listen to, 20 minutes at a time.
Andrew and Jan are always there, supporting, encouraging, tweaking programs for each child as that child progresses. They remind us that child development is not a set series of stages but a continuous process.. in Sams case his motor skills are profoundly delayed – but in order for him to gain motor control, first he needs to get his tactile perception sorted, then he needs to understand how his joints move, THEN he can start to try and control his movement on the floor (wriggling, kicking etc). And only once those building blocks are in place can the bigger changes start to occur.
It will take years of intensive therapy to overcome Sams difficulties and we have no way of knowing how far he can go but we’re not going to stop trying! Honestly, I’d recommend it to anyone and everyone…. After all, what have we got to lose? X
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