Second Annual “Blogging for TSC Awareness Month” Day 11
by guest blogger Marie James (Carmarthenshire, Wales, UK)
First written in 2008 for the Tuberous Sclerosis Association (UK) SCAN Magazine and updated for May 2014 TSC Awareness month in the USA and Awareness week of 12th – 19th May in the UK.
Because of the difficulty Trystan has in understanding the world around him we often live life as if treading on eggshells. Since he was a baby we have taken each day, one at a time…
Back in 1987 when Trystan, our youngest son, was only 8 months old we learned that he had TSC.
For him, like many others, it means a life of dealing with the effects of tumours in his brain, heart, kidneys and on his skin, unpredictable multiple types of seizures, learning disabilities, hypertension, osteoporosis and complex autism.
It was in 1995, when he was nearly 8 years old, that Trystan was diagnosed as having complex autism, and the whole family were able to sigh with relief. For us, the diagnosis meant some understanding towards making sense of a range of rather unusual behaviours. These included a constant need for reassurance; the fear, fascination and obsessional relationship; and the difficulties that changing activities can cause, e.g. refusing to get into the bath and once in the water, often refusing to come out.
The additional label of autism was also the key to unlocking access to educational provision that we were seeking at that time, to help address some of Trystan’s fundamental communication and social needs.
Trystan has limited verbal communication and an avoidance of social interaction. When in a group he isolates himself and appears to spend most of his time pre-occupied with his own ritualistic interests and obsessions.
All it takes to trigger obsessional episodes is a clip of an old home video which prompts a need for a long forgotten toy or an advert on television. Trystan has had inconsolable compulsions to acquire such things as tinned cat food – just for the label, as you may have already guessed, we have no cat.
Over the years he has had a wide range of obsessional interests. Some of these developing from an initial fear phobia and fascination phase to a full blown all consuming obsession. For example, from the terror and panic caused if a fly enters a room, to being absolutely engrossed with catching and observing flies in a plastic pot. The desensitising programmes used for this fly phobia start in April of each year when the flies first appear and usually have some effect by September time when flies tend to disappear. With no exposure to flies over the winter months by each April, we are back to stage one, every year! Nevertheless, we persevere.
On occasions, flooding Trystan with exposure to seemingly all consuming obsessions has enabled him to develop some of these obsessions into healthy interests.
Years ago, if Trystan spotted a Mini car whilst out and about on one of our many ‘diesel therapy’ trips, he would insist that we pursue the Mini for a number of miles. As a result of his interest in Mini cars Trystan was motivated to learn more about them, giving us the opportunity to help teach him colours, numbers and letters (from number plates) and even different car models. A trip to a two day Mini exhibition at the NEC in Birmingham in the mid 90’s did the trick as regards flooding him with seeing Minis. Since then he has been contented to observe, pass and thankfully, not pursue.
Whilst most major obsessions have, with a little patience and different resolutions, been turned into such interests, unfortunately not all of Trystan’s obsessions have been as educational, or as easy to resolve. The constant repetitive rewinding of little clips of his favoured videos have left us close to becoming demented on many, many occasions.
Collecting new clocks or watches is a long term favoured passion with, by now, over 300 accumulated. Random alarms and timers go off during all hours of the day and night, making us jump into immediate search mode to find and switch off the offending timepiece. Trystan is absolutely fascinated by each and every one of his clocks, the sounds, setting the time, the moving hands and the mechanisms. Despite this interest he is unable to tell the time; apart from when it’s three thirty. (His school day finished at this time and Trystan on occasions would turn his class clock forward in the expectation of his taxi arriving to take him home.) With all these clocks in the house, needless to say, that British Summer Time hour changing causes considerable confusion when resetting the clocks in our household.
Slotting is another long term obsession. During visits to the seaside, the sand and sea hold little interest for Trystan; he has his radar on full alert for the amusement arcades and their coin slots. He has an impressive collection of money boxes and we are adept at improvising all sorts of containers into coin slotting boxes.
Many contented hours are spent on slotting money, clock watching and his game consoles. Trystan’s bag always contains a variety of these items to enable him to tolerate environments he would otherwise find really difficult when out and about.
Music has always been a source of pleasure and joy for Trystan. He acquired language skills from imitating the tone and pitch of songs. When he was 9 he started 1:1 dancing lessons, with music as the enticing motivation. He has achieved many grade medals for his versions of traditional dance routines. Best of all, from this stems his enthusiasm and enjoyment on the dance floor at any disco, often regardless of the number of people there. Whilst Trystan enjoys others singing and dancing in his company, his dad and I are restricted from doing so; one look from him will usually stop us in our tracks to avoid knowingly upsetting him…. and to Trystan, finger tapping on the wheel of the car whilst cruising and listening to music, constitutes as dancing!
Recognition of his accomplishments is relished by Trystan. He constantly seeks assurances that he and all around are okay. A variety of visual prompts are used to reinforce spoken language to try and help him understand and make sense of what is happening around him.
Trystan labels objects of interest in a way that is logical to him — it is such a huge relief when we are able to figure out the connections that he makes, e.g. asking for the ‘Daily Mirror’ is his way of saying he wants to play ‘Who Wants to be a Millionaire’ simply because the Daily Mirror Newspaper ran adverts during the TV show in the late 90’s. Life is never boring. Trystan certainly keeps us on our toes.
Any, or indeed all, changes in activities can potentially pose problems for Trystan. In reality that means that from the moment he wakes to getting him into bed and then off to sleep we are constantly assessing his behaviour. Occasionally the bigger changes seem, on the surface, to be accepted without difficulties. We moved into our current home four years ago and Trystan seems as happy here as he was in our old home, however since the day we moved he has become anxious every time he leaves the house believing he is going back to our former home. We avoid mentioning the word ‘home’ altogether as it triggers anxieties. Although Trystan has some language skills, it is quite limited and much of his communication is by means of us being aware of his body language. Particularly when trying to gauge how well he understands what is happening around him. This helps us assess how he may react to changes in daily activities, such as getting washed and dressed, having breakfast and taking his medication, and what may be planned, for the day. I say may be planned, as Trystan is, almost without exception, in control of that!
Since leaving school Trystan has a highly individualized person centred package of support. His part time support workers provided 2:1 community and home based assistance and he is enabled to choose what he wishes to do each day. His weekly programme when he concedes to go out into the community includes visits to a local theme park, swimming, exercise gym, bowling, archery, amusement arcades, a host of local beaches and waterfront walks, local woodland parks and an outreach service option from the National Autistic Society’s Neath Day Service.
To make life easier for Trystan, we carefully plan and think ahead on how we present all changes to him and are constantly aware of not saying the word no, or be negative in any way. Even with almost three decades of experience under our belts and despite all our best laid plans, we still manage on occasions, to get it very wrong.
Of course another way of looking at Trystan’s unpredictable and unusual behaviour is the fact that with the TSC, the learning disability, the epilepsy, the mix of anticonvulsants, other significant health difficulties and the complexities of his autism, it is actually quite remarkable that he is able to function and enjoy life as he does. Whilst we pursue every opportunity for Trystan to have new experiences, long gone are the days when we strived to make him conform. The whole family is extremely proud of him, just the way he is and we rejoice in all his achievements.
When Trystan was diagnosed we consider ourselves fortunate that we made immediate contact with the TSA in the UK & learnt of their Research Fund. Raising awareness and funds for the TS Association and getting involved in Research projects whenever possible has proved to be therapeutic & gave us much needed hope for the future.
Remarkable Scientific Developments in TSC Research has been achieved over the past three decades & much of that on our very doorstep at the Institute of Medical Genetics in Cardiff (Wales, UK), by Prof. Julian Sampson and his team. We now, for some of the symptoms, have emerging treatment options; the work on ultimately finding a cure for those yet to be born with TSC is ongoing.
Meeting and sharing information & stories with others who lives are affected by TSC is a great privilege, with lifelong friendships gained.
Thank you to Becky for the invite to blog and to you for your interest in reading. Marie James 🙂
For more information on the TSA in the UK, please click on the links below: