Ben and Finlay are identical twin boys, born in March 2008. Over the course of their first eighteen months of life the boys reached most of the usual milestones, sitting up, walking etc, but in late autumn of 2009 we really noticed how much their development was behind children of a similar age. At first, the usual explanations were offered in terms of them being boys then them being twin boys (seemingly twins develop later) but as time wore on these developmental concerns became more profound.
Tuesday 09 November 2010, our 9/11, will forever be etched in our memories as the day we attended a fateful meeting where the diagnostic duo of Community Paediatrician and Clinical Psychiatrist confirmed what we had long known that our beautiful twin boys had autism spectrum disorder. What we weren’t prepared for was the learning disability bolt-on and the severity of the boys’ condition. The words of the two professionals in telling us that the boys would experience ‘significant difficulties for the rest of their lives’ will always haunt us. The boys were also diagnosed with hypotonia and hypermobility.
We have grieved, of course we have, and we continue to grieve for the life we dreamed and hoped for and that had been so cruelly taken away from us. We didn’t wallow for long though and we started reading and researching, determined to do all we could as parents to give our little boys the best opportunity of living the most fulfilling lives possible and reaching their true potential. Every child has potential but sometimes you just have to work a little harder to develop and exploit it. We knew we couldn’t cure the boys but self pity was never going to help them.
In January 2011, the boys embarked upon a home-based ABA programme. ABA is relatively rare in Scotland but not as scarce as funding for home-based programmes! There is a dearth of strong, experienced consultants and sourcing energetic and enthusiastic therapists is a huge challenge. There have been some rocky moments and false starts along the way but with Skybound Therapies as our consultants we know we are on a true path.
We will never deny that life is difficult and challenging with lots of heartache and tears along the way but there have also been so many remarkable moments of courage and determination by the boys in overcoming the daily difficulties of life. Their fantastic progress has made every ounce of effort worthwhile and we are so, so proud of them.
With Skybound we identified feeding, communication and compliance as our three biggest daily challenges. Feeding was the most important as the boys had never moved on from pureed food and as time passed their variety of meals had gradually contracted to two or three choices. For a year, Ben would only eat Cheerios and custard and in challenging this we moved both boys onto a gluten, casein and soya free diet. This brought instant dividends in that Ben started opening up to new foods.
Soon afterwards however, he regressed again and would eat very little and barely open his mouth for the spoon. Finlay was slightly better in that he ate bigger portions but the variety was equally constrained. Both boys were spoon fed, which meant meal times were extremely stressful for both the boys and us and it was impossible to feed both boys at the same time meaning that two people were always needed for meal times.
We tackled the issues associated with their feeding and established that the difficulties we experienced with the boys were behavioural in nature not sensory, which made them easier although not easy to tackle. The boys have weak jaw muscles, and a jaw slide. They have been given exercises using chewy tubes to help us strengthen the muscles and reduce the jaw slide.
We tackled eating head on by pairing up different, new foods with the strongest reinforcer the boys have, their iPads. The boys were offered small pieces of food in return for a shot of their devices and soon they were voluntarily taking bite size chunks of food from the plate in greater numbers. In the early days they tried quite a few new foods from fish fingers to sausages to broccoli to cauliflower to Nakd Bars. It was great to see them finally opening up to new foods and experiences.
It wasn’t all plain sailing though and we experienced several extinction bursts with the boys which led to sometimes two hour ‘standoffs’ and in one case five hours where the boys would go through their whole repertoire of emotional torture to get us to back down. We had to stay strong in the face of the boys’ tears and giggles and eventually they would cave in and scoff the pesky green stuff before them!
The boys now eat a huge variety of foods from papaya to home-made fish fingers to salad leaves to sweet potato to water melon to chocolate brownie. Reinforcement via the iPad remains important but we are determined that our boys eat a healthy diet and are able to join us in a family meal at the dinner table! To date the boys are now eating over 40 new foods; an amazing achievement.
We now have two healthy, happy boys, who eat a wide, varied and balanced diet.
They are both toilet trained, day and night. They sleep all night, every night. Behaviours have reduced significantly and are largely confined to moments of transition or occasions when the boys don’t know what is coming next. We are therefore working hard to reduce that unpredictability for them. Although the boys are still non-verbal, they now have a basic form of functional communication through Proloquo2go on their iPads. Remarkable progress for two remarkable little boys.
Ben and Finlay are happy, loveable little boys, adored by all who meet them. Their giggles would light up even the dullest day! But who knows what the next 5 years will hold. We try not to think about it too much as it’s scary. We know that our boys will live with us as long as we are able to look after them and after that who knows, it’s far too frightening to think of. Our programme is intended to equip the boys with as many basic independent skills as possible so that in the future they can hopefully communicate their wants.
We’ve managed to fund our programme to the tune of c£30,000 per year through benefits, savings and lots of unashamed fundraising. We believe our investment is more than justified given the boys’ progress.
You can read more about the boys and the ongoing story of how a growing number of unbelievably generous people have applied their minds to raising funds to assist with Ben and Finlay’s ABA programme on their blog.