Adam Bancroft aged 7 years 5 months
Adam has a rare condition named Isodicentric 15 chromosome duplication disorder, this leads to profound learning difficulties, seizures, autism and hypotonia. Since only 3 weeks old he had been in and out of hospital with illness and operations. He had needed so many blood tests, cannulas, drips, MRI scans under general anaesthetic that he had become a very fretful baby and toddler, we at this time did not know that he had this disorder but he was missing all his milestones and the gap kept increasing the older Adam got.
Adam did not like anyone saying his name as he had paired it up with a demand or something awful about to happen like a blood test. We could not go anywhere as his meltdowns were increasing thick and fast. Adam could do one thing really well and that was to scream really really loudly. He was only happy being cuddled 24/7 and would not sleep in his cot preferring to be next to us all the time. We were also nervous about leaving Adam alone as he had stopped breathing at only 3 weeks old and we nearly lost him to viral meningitis. Adam was happiest when either being cuddled and kissed or left to his own devices to sit and mouth his toys or turn Lego pieces round and round in his hands repetitively and then to his mouth….removal of said items would cause meltdowns that could last hours.
Time went on and we found that here was no way we could get Adam to give us any time of day to let us teach him anything, he had no means of communication and he would just scream if we tried to do any of his physio exercises to help him to walk (they said that he might possibly never walk). We knew that there would be no school that would be able to deal with all his medical needs and increasing behaviours. We were bombarded by lots of professionals imparting well-meaning advice but we just found nothing workable as he saw any interaction apart from cuddling as being a demand.
We put a plea of help on a Yahoo ABA group and Risca kindly replied and then came to see us. She was a breath of fresh air and could see exactly how Adam was training us to his every need. She showed us how to manage his tantrums and we started working on Adam letting us touch his hands so we could start to teach him to communicate. I found two wonderful therapists and Risca came with me to our Local Authority to secure a home program.
Four years on and life is totally different, using ABA as a foundation to implement all of Adams therapies (Physiotherapy, Occupational Therapy, Speech and Language therapy (i.e. Talk Tools), Scotson Therapy, Hydrotherapy, Oxygen therapy to name a few!!!). We have a little boy who has learnt to walk, can communicate his immediate wants and needs via augmentative devices, he can use a touch screen computer, can play and enjoys being around people. When we go out for a meal he is often one of the best behaved. He rarely screams or tantrums unless he is really poorly. He will allow the dentist to look after his teeth and has no problems letting us brush his teeth or have his hair cut. We have just started toilet training and so far it looks like the special procedure Risca selected with Adam in mind could be just the right one for him. He is listening and coming to join in with us quite happily when we call him. We are working on Gross and fine motor skills, matching objects and social skills as well as all the other therapies mentioned above. Our main aims are to teach Adam daily living skills and personal care. He has just started feeding himself and is learning to scoop food off a plate, for Adam this is a huge achievement. He now has a very full and varied program and the more skills Adam acquires the easier life is getting. He has a wonderful team of therapists who double up for many sessions to keep Adam highly motivated and ready to learn both at home and in natural environment teaching. However, he does still outwit us at times and manage to manipulate us into what he wants to do by his sheer cheekiness but we quite like this part of his personality as it proves he has a strong mind and we never thought we would be able to ever say this as he was so cognitively challenged.
Mind you, it has not been a smooth journey during the past 4 years of home schooling. Due to some pretty controlling behaviour, bowel issues, illness and the challenge of eating food with weak facial muscles Adam decided to stop eating (it was just too hard for him) the less he ate the weaker he became, the weaker he became the less he ate and it all went spiralling out of control until Adam ended up in hospital and a GI feeding tube was discussed as an option. We pulled out all the stops to find the right way of enticing Adam to eat; even just letting us place food near to him was heavily rewarded. He slowly moved from 1 spoon to 2 spoons. We had to change our whole attitude and be very laid back, if he didn’t eat it we would take it away as just waiting it out was adding to his love of control. We paired up food with watching the TV for a while and just gave him all the foods he loved. Adams eating improved so much that he began to love food and we then were able to implement ‘Talk Tools’ oral motor techniques. We are working on lip closure and rounding, jaw strength, tongue lateralisation, abdominal grading and the biggest of all tongue retraction (tongue thrusting/protrusion has been a major issue and the main cause of his previous feeding issues). The more oral motor therapy we do the better Adams eating and drinking has got, he is willing to try new foods and trusts us that we won’t give him anything that he cannot deal with. He is still on some pureed foods but his solid food repertoire is increasing rapidly and we are confident that the percentage of pureed to solid foods will shift over so it will end up mainly solid normal meals. Adam has such a great relationship with food now and is currently on a growth spurt so is eating us out of house and home. His ‘snack’ mand, (located in the kitchen), is his favourite augmentative device and runs out of batteries often. Adam also looks healthier and his physical abilities are also soaring with him learning to walk up steps, wanting to go out for walks and lately being able to at last get up the steps in order to whizz back down a huge slide at ‘Playzone’….A huge achievement for a little boy they said might never walk. Admittedly Adam still needs some physical help and heaps of motivation but we know what reinforces Adam to learn and we always have those reinforcers to hand.
Because we run a multi-disciplinary program we can incorporate all the therapies we have carefully selected to aid Adams physical difficulties associated with Isodicentric 15. This has developed over time and constantly evolves as Adam progresses or his need change. We see his behavioural consultant every couple of months so we feel confident that nothing is missed. We move Adam on once techniques are mastered or if he struggles we then look at a different route to help Adam succeed in achieving the skills he needs to help improve his life and ability to take part in activities. He still has outbursts but they are fewer and shorter and we all know how to deal with them so they don’t increase but they are absolutely nothing like when we first started therapy. Picture the scene, four years ago if my husband and I split up at our enormous local supermarket to get the shopping done faster, we would be able to find whoever had the trolley with Adam in easily by just following the blood curdling, ear piercing screams from the aisles. It was awful and people stared at us like we were the worst parents in the world.
We see how happy Adam is when he gets it right and he is a real little show off at times especially for Risca when she comes here for training days and he has all his therapists here to shower him with praise.
Georgina and Steve Bancroft