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The world according to Ethan

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 Ethan Morrissey tries out his new classroom at Clohanes National School. Photograph by John Kelly
Ethan Morrissey is five-years-old, he lives in Clohanes in West Clare, he loves music, especially pop and he can’t wait to start at the local national school on Monday. Ethan is the same as every other little boy his age, only he has Down’s syndrome.
This week Ethan will be the first student with Down’s to go to mainstream school in Clohanes and he’s really looking forward to it. equally the school is eagerly awaiting his arrival.
When Ethan came into the world, his parents Anthony and Sandra, and his sister Helena, were delighted to welcome the bundle of joy they had been waiting nine months for. However, they were shocked by the comments from those they met who sympathised with them for their loss.
“The hardest thing that we were ever told was that we were going to have an awful life with him. He wasn’t born a week and I was sympathised with for my loss. I thought these were two of the most horrendous statements that a person could make,” Sandra said.
“I asked them ‘why are you sympathising?’ and they said for the loss of the child you wanted. Sandra said ‘but we got the child we wanted’. That’s people’s mind sets,” Anthony explained.
“In actual fact we got something extra. He’s been an added bonus. He’s made us look at life an awful lot differently. You are not wanting this and that. Once I can feed, clothe and take care of the kids, I’m happy with that,” Sandra said.
When Ethan was born, Sandra said she always had this feeling in the back of her mind that he had Down’s syndrome. Having trained to care for children with special needs she knew everything that could go wrong and finding out Ethan had Down’s syndrome wasn’t a problem.
“I was just worried what level and how was his medical condition – that was it. A week after he was born we went to Dublin and we met Dr Collin McMahon in Crumlin. he examined him and told him that he had the best heart he had heard in a Down’s syndrome child, if Ethan had Down’s syndrome,” she said.
Anthony remembered that day sitting in a corridor in the hospital waiting to go in with Ethan to have his heart scan and watching young parents like Sandra and himself come and go with their sick children.
“This mother and father came out with a little baby and he was being brought out on a trolley, a life support on wheels for all the world, and Sandra and I just looked at each other and said nothing. Then, when Dr McMahon told us that Ethan had a perfect heart, Sandra started to cry.
“I said ‘this isn’t the place’. I wasn’t being nasty it was just because we saw kids who were missing limbs, kids with leukaemia, cancer, and who were badly burned and you walk out of that hospital and you think you are the luckiest person in the world.
“I apologised outside, I just felt guilty crying inside because we were so fortunate to be walking away with a perfectly healthy baby. We took it from that day and never looked back. There are hard days, but there’s no extra strain,” Anthony said.
Anthony, who is the Clare chairperson of Down’s Syndrome Ireland, said in this role he wants to get away from the stigma associated with Down’s syndrome, for people to be able to look past the physical difference and to just treat them normally. 
“My whole reason for highlighting this is other people’s attitudes. This wish of ‘God help us’ that’s out there – I can’t stand that, you look at Ethan and ok you’re going to smile, he’s Down’s syndrome and he’s cute, but what is the wish of God help us attitude for, you go to Crumlin and see those kids and then tell me this wish of god help us about my little fella there’s no reason for it. It’s just patronising to be honest with you. I want to get rid of the old fashioned way,” he said.
Anthony believes things are changing. He was bowled over when the couple were approached by their local school principal, Aideen O’Mahony, about enrolling Ethan in Clohanes NS.
“He was only born a couple of months when Aideen asked us were we going to enrol him. We were taken aback that she would offer without us even asking. I was very proud of that. They were always interested and it was great to have that support. We took for granted we would get a local school; we’re 30 miles from Ennis and it would be an added expense. We would need funding for a special school. The school has been a huge support and have said anything we want them to do and they would do it,” Anthony said.
“They have all done the Lámh course which is a simplified sign language, it’s descriptive but you use the word with the action. It encourages speech. The problem we’ve had with Ethan all along is on the hearing side of things. Normally Down’s syndrome children do. He’s had his adenoids removed and had grommets put in and since then we’ve noticed a difference ourselves but it will take six to 12 months. He understands you perfectly but when he’s speaking it’s an inner ear thing. So he’s doing well and he’s no other medical condition which is fantastic,” he explained.
Anthony believes that because those with Down’s syndrome look differently that becomes the focus. He would like to eliminate the attitude out there that Down’s children and adults are not able to achieve.
“I think we have to dispel the attitude that they’ll never amount to anything because of the intellectual side of things. Look at Ciara O’Loughlin who has been in the paper so many times and who has taken so many gold medals. At the same time I think it is a great time for children with disabilities. I think the future is brighter for those across the spectrum of disabilities as they will be more accepted into society because they have gone to school with society,” he said.
Sandra and Anthony explained they always wanted to send Ethan to mainstream school, so he could grow and develop alongside his peers. They also felt it would help him with structure.
Ethan went into Clohanes National School for a few days at the end of last term and ahead of his arrival, the pupils had been taught some lámh signs and they were extremely welcoming.
“There was an anticipation from the kids, and they were signing with him and I could see his reaction and the attitude to the teachers, the look on their faces, they were delighted. This is a new era and a new learning curve and you could see the joy in having him there. I have no worries about him going to Clohanes, he’s going to be well looked after,” he said.
Fortunately Ethan has been granted a full time SNA and the maximum resource hours available but there is a concern that, in time, the resource hours will be cut. the Morrisseys hope it won’t come to that.
They are for now looking forward to getting both Helena and Ethan ready for their first day back at school and await the achievements that will come because of it.
“Our biggest aim for Ethan is that when we are not around that he can manage for himself and that he doesn’t have to be relying on Helena. We’ve enough done if he can live independently, manage his money, read and write and if he goes further, then that will be a bonus,” Anthony concluded.

 

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