Angels in Action March-April 2015

Luke and Zach are identical twins (UBE3A) who will be 8 in May and are the youngest of six boys.We live in a little coastal village called Downings, Co. Donegal, Ireland. Living in a small rural community definitely has its advantages as the support that we get from family and friends cannot be bought. My family are involved in the hospitality trade, so everyone knows the boys and they are accordingly acknowledged wherever they go. It’s lovely to walk in to the hotel and there’s high 5’s going on all around- little celebrities in their own right!

The twins have very different personalities with Luke being the more serious and headstrong of the two. Zach just oozes devilment and loves nothing more than winding his brothers up and knows exactly which buttons to press. He is more sociable and outgoing and interacts immediately with others while Luke is more cautious, he sits back and accesses every situation and then decides what he will do or who he will play with. Zach loves playing with Lego and Magformers and Luke loves everything about his iPad. With the boys love of water we are spoilt for choices of lovely safe beaches where we spend most of our time during the summer months.

Living in a house full of boys, we are a very active sporting family – boys don’t know how to sit! We are a fanatical Gaelic football family and travel to most of our county’s games. In my day I played myself and now I help coach the underage girls teams. When the twins were born I had dreams and visions of all 6 boys playing together on the one local team but that was all dashed with their diagnosis until last week where we have got 100% support from our local club to involve the twins- happy days! I think this is very important for them to be included in community activities as they don’t attend the local school and it gives other children a chance to get to know them.

Luke and Zach attend a special school about a 40 minute drive away, to me a little ironic that the school is called “Little Angels”. They started there when they were 4 and after the first year myself and the principal decided it was best to separate them as it was a case of “double trouble” with Luke leading Zach astray. 

They are now each in a class of 6 children with two SNA’s in each class. Zach is streets ahead of Luke at school and I firmly believe it’s all down to seizure activity. We battled to get Luke’s seizures under control while Zach has only ever had drop seizures twice. Luke has now been seizure free since May ’14 and he’s coming on leaps and bounds.

In Ireland SLT/ OT/ and physio are free and they receive all these therapies during school. The boys have a few hand signs and I started them on P2go on their iPads last year without the support of their teachers and SLT. I feel the SLT is way behind here in Ireland, and I am still fighting them on the boys capabilities. Last year I had the pleasure of attending one of Mary-Louise Bertram’s workshops here in Ireland and Zach’s teacher attended also and afterwards she was converted!

Luke and Zach are very close but can still fight the bit out like any typical siblings. Any time we are in the car they hold hands and when they are outside in the garden one always follows the other with the leader role always switching off. They will not share anything except with each other and swap everything dinner included, and Zach being Zach always fairs off better. Call me mad but I do believe they are telepathic and have night vision!

The boys amaze us every day reaching different milestones as they teach us that the smallest things in life are the things that count the most.

Lá Fhéile Pádraig shona daoibh go léir –

Happy St. Patrick’s day to you all from the Cullen Family (Ireland)