Tag Archives: non-verbal

Life With TSC & Autism — Trystan’s Story

Second Annual “Blogging for TSC Awareness Month” Day 11

by guest blogger Marie James   (Carmarthenshire, Wales, UK)

8031   1   TrystanTrystan is 27 years old and lives with Perry and Marie, his mam and dad, in 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, IMG_2779kidneys 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.

Trystan JamesCollecting 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 intoIMG_2850 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:






It isn’t going to be easy, but nothing worth doing ever is.

Second Annual “Blogging for TSC Awareness Month” Day 3

by guest blogger Michele Stiefel  (Lancaster, Pennsylvania)

adam 5In March of 1985, our second son was born.  Adam was the baby I could relax with, knowing a bit more the second time around.  But by May, Adam was hospitalized with his first seizures and flown from our local hospital to Children’s Hospital of Philadelphia where he was diagnosed with tuberous sclerosis.  No one in our family had ever heard of this disease.  No one had ever had seizures.  Our world felt like it had blown to pieces.  His four-year-old brother, Ben, felt like he had caused the baby’s illness because he had been so jealous.  Ben began to act out and we sought out counseling to help him and us.  Slowly over that summer, we started to try to find some kind of normal – going to the local mall, taking Ben to his swim lessons and so on.  We waited anxiously for Adam’s early intervention program to have his spot available in the fall, but before we could start – Adam was back in Children’s Hospital with infantile spasms.  The next three years were nothing short of awful as there weren’t the kinds of meds back then that are around now.  We never really got control of the infantile spasms and he went from a smiling baby at 4 months to a lump that didn’t cry, didn’t coo, and didn’t roll over…just laid where ever he was placed and kept on having seizures.  That was our beginning…

Fast forward two years and Adam is five.  The infantile spasms are fading out although his “Heinz 57” varieties of seizures are still around.  But he’s no longer in the fog of IS:  he smiles, has a beautiful face and people fall in love with him easily. He’s learned to sit and crawl. He’s standing but hasn’t taken that first independent step yet.  My husband and I hire his early intervention teacher to do respite with the boys overnight so we can celebrate our 10th wedding anniversary at a nice hotel.  When we get home the next morning, Adam greets us by walking independently around the corner!  Stinker took his first steps while we were away!  It was the best present we ever received.

Early intervention those first five years helped Adam and our whole family to survive.  We learned to hope and dream of a future, not just of limitations but of having him experience as much of a normal life as his older brother with the same opportunities and experiences – adapted Adam-style.   It wasn’t going to be easy but nothing worth doing ever is.

The first big “normal like Ben” goal for Adam was to attend weekend religious school at our synagogue.  There were no other children with special needs in adambmitzvahthe building and our rabbi wasn’t so good at “getting Adam.”   Luckily I’d met another Jewish mom in town whose son was a couple of years older, also non-verbal, who used a wheelchair.  I talked her into joining and we started our own class with our boys.  About the same time I volunteered to serve on the synagogue board of directors because the best way to make things happen is to become a decision-maker with a voice and a vote.  Then the rabbi who didn’t get our kids took another job in another city and the search committee started looking for a new rabbi who would be willing to do Bar Mitzvahs for kids with special needs.  We got a great one.  Our boys started studying extra with the rabbi, listening to Bible stories, handling ritual objects, and being recognized in front of the entire religious school just like the rest of them.

At 13, Adam had his Bar Mitzvah and it was wonderful!  He loved Jewish music, so we hired a Jewish folk singer who wove music throughout the service.  Adam is non-verbal so he couldn’t lead the service like a regular Bar Mitzvah boy would.  Instead he worked for two years to be able to hold a special wine cup upright throughout an entire blessing without putting it down or spilling it.  He learned to hold and “hug” the Torah scroll on his lap without letting go.  Being non-verbal he couldn’t read from the Torah in Hebrew so his brother read for him.  This was special – no one is allowed to touch the Torah scroll where the Hebrew is written.  One uses a special pointer to follow along.  Big brother Ben held the pointer and Adam’s hand at the same time as he read so that Adam could “read with him.”  To keep Adam from fidgeting, Ben used one finger to tickle Adam’s palm because it calms him — all while they were doing the Torah reading.  The sanctuary was full and there weren’t too many dry eyes in the house.  We followed it up with a great party and Adam definitely knew he was the guest of honor!

Adam went to a special needs summer day camp from the age of 8 to 21 and had lots of fun.  Swimming wasn’t his thing but music time was.  He participated in programs as a teen where he got to hang out with another teen or college student and do regular teen things.  He went to four proms and had a date for each one of them!  He discovered blondes… :)…he really likes blondes.

The summer after aging out of school at 21 was scary.  A rare malignancy was discovered in his colon.  Surgery to remove half of his colon and three weeks in the hospital with complications followed.  He was down to 85 pounds and took a good two months to recover.  Then it was time to begin his journey into the world of adult services.  We did not want Adam to be inside four walls all day in a sheltered workshop environment.  So he became one of the first participants in a new pilot program taking individuals with severe adam promdisabilities out into the community as volunteers.  He helped with Meals on Wheels – his staff would drive the car and knock on the door; Adam would hand the lunch to the senior citizen.  He made lots of elderly friends on the route.  He worked in local libraries, pushing the books onto the shelves (with hand-over-hand support by staff).  He was a busy young man and enjoyed being out and about in the community.

Through one of the programs, Adam met Matt who is also non-verbal and has autism.  Just picture two non-verbal guys making eye contact with each other and laughing and insisting on sitting together every day at lunch.  The program staff told me about how great they were together and said, “They should live together.”   I sent our contact info home in Matt’s backpack and his mom called me.  We started to get the guys together on Saturdays for pizza and we began to talk about the possibility of them living together.   News traveled through the system about these two guys and how great they were.  The head of the county intellectual disability department called us, said he’d heard about these two and were we ready for Adam to move into his own place with Matt?   Adam was 24 and we said yes because one of our dreams was that Adam would live with a friend, not just in a place where there happened to be an opening, but with someone he truly liked.  He’s lived there since 2009 and he loves it.  He’s thrived there, gaining in independence and doing things there that he’d never do for me at home!  He’s in a community he knows well, having grown up there.  We are able to keep an eye on things and be involved while we are still healthy and able because we’re in our 60’s and none of us live forever.   As parents our job is to give our kids “roots and wings”.  Big brother, Ben, went to college, started a career, got married, and bought a house.  Adam has his jobs, social life, and lives in a house set up just for him and Matt.

I mentioned that Ben got married.  Guess who was his Best Man?  Adam beamed with joy throughout the entire wedding weekend.  And boy!  Were they both handsome in their tuxes!


Finally, it’s important to know that we went through really hard times with his tuberous sclerosis, just like a lot of you.  Recently he was diagnosed with Crohn’s disease, totally unrelated to his TS, so he gets two chronic illnesses to deal with and it feels really unfair.  There have been times over the years when I fantasized about throwing my suitcase in the car and heading west and never looking back, but I never did.  Instead we used counselors, behavior therapists, doctors, teachers, compassionate friends and family to help us get through the worst.  Now after 29 years, I see what our family has accomplished and I know we more than survived, we thrived.  We are all better people because of having Adam, TS and all, in our lives.  So keep dreaming of possibilities for your kids – you never know what you can achieve!