Striving to be an independent boy

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Five-year-old Éanna Doyle, who is living with spina bifida and hydrocephalus, is not yet attending mainstream national school, however, his teacher at Scoil Mochua Special National School in Clondalkin believes that he will in the future.

Éanna, who is from Sallins in Co. Kildare, is doing really well with his mum Caitriona praising Scoil Mochua for being an “amazing” educational facility.

“The supports are there to give him everything he needs and he is so happy. He has his teacher Anthony, three SNAs, a nurse to do his catheterisation, a physio, and an OT for speech and language,” says Caitriona.

“If he was going to mainstream school now, we would be constantly taking him out of class for all these appointments.

“Also, there are only six in the class, so it is pretty much one-to-one care and attention.

“If Éanna had started in mainstream school this year, there is no way he would be able to cope with the class size and noise levels.

“In Scoil Mochua, every child is at different stages of development and they are all being looked after individually to their level of development as well as a group.

“While he is not ready for mainstream education yet, his teachers think he will be able to get to mainstream at some stage - maybe not this year or next year but at some point in the future.”

Accessing Central Remedial Clinic (CRC) services since he was six weeks old, Caitriona says that Éanna was “automatically in the system”, so he was accepted into playschool for two years before starting in Scoil Mochua last year.

“He loves it, he is very comfortable going into school as he knows everyone,” says Caitriona.

“He is becoming more independent in himself and he wants to be independent, he wants to be able to do things for himself.

“Scoil Mochua encourages independence also; he is told to hang up his coat and put his lunch away and do things for himself.”

Caitriona says that it is very encouraging that education can be such a positive experience even if your child has to attend a special school. While the majority of children with spina bifida go to mainstream schools, she says that for children like Éanna, who needs a little extra help, it is great to have access to education in a special school.

While Éanna is striving to be an independent boy, he is quite accepting that there are things that he will not be able to do.

“He knows now that he cannot walk. He wants to walk and run and asks why he cannot and when it is explained to him he accepts it without crying or getting upset,” says Caitriona.

“I try not to look too far into the future, I find that would be hard. I take each day as it comes, that is the way we – Éanna’s dad Mark and I -  have always done it. I deal with the present and let the future look after itself as I do not know what kinds of things will happen in the future.”

Éanna was Caitriona and Mark’s first baby and they found out when Caitriona was 20 weeks pregnant that their baby would have spina bifida and hydrocephalus

“At about 32 weeks, we were told that he would need a shunt as his hydrocephalus was on the severe end of things.

“Éanna had surgery the day after he was born for back closure due to his lesion and had VP shunt inserted,” says Caitriona.

“We got our heads around Éanna’s diagnosis very quickly, we took a few days out of work to get our heads around the diagnosis and come to terms that our baby was going to have special needs. We decided to think positively and get on with things.

“Éanna was in and out of A & E for the first few months of his life for different reasons. We got him home from hospital two weeks after he was born and the next day he was back in hospital as his back was leaking cerebral spinal fluid.

“That happened a few times and he had UTIs and seizure-type activity where his legs would continually jerk for up to two days at a time for a number of months. The doctors never got to the bottom of this but thankfully it eventually stopped.

“All in all, we have been very lucky Éanna as he is still on his first shunt. He had quite a high lesion so his mobility is not good.”

Éanna has Agensis of the Corpus Collosam which means that the area of the brain which connects the two hemispheres is missing; an under-developed cerebellum; a cyst on the back of his brain and Chari Malformation.

“He cannot sit unsupported which would be unusual for kids with spina bifida. I think the problems in his brain, especially his under-developed cerebellum contributes to his balance issues and is the reason he cannot sit,” says Caitriona.

“I do not know if he ever will be able to sit unsupported. We travel to Limerick every week for private physiotherapy and his upper body strength is very strong; he is definitely coming on.”

 

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  • commented 2017-10-29 19:28:29 +0000
    Looking good Eanna lovely wee boy so clever😊X

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