Kinvara recently hosted a family fun day to raise money for ‘Che Kinvara’. Sonja Luan Devine tells The Clare Champion about her son Che, community spirit and the importance of school.
Che O’Grady is 11 years old. He loves stories. He loves DVDs. He loves school. Che also suffers from Cerebral Palsy. He is non verbal and has difficulties swallowing.
Last week he returned to school after the summer holidays. Walking through the gates, Che found the piece of his life that had been missing since the end of June.
“Every Summer my child progressively falls apart from the lack of routine and the lack of seeing his friends. Children with intellectual disabilities need routine to feel a sense of security. He is happy in a routine and when he loses that he slowly falls apart. He can have a meltdown. He sometimes flings himself on the ground and screams and shouts. In Lidl he does full circles of the shop shouting. People say to me, ‘oh I know my kids get bored during the summer too’. But this is not bored. This is suffering. I have actually driven him to the school to show him it is shut in case he thinks I am keeping him home for some reason. When he went back to school this week, he literally ran through the gate screaming with joy,” Sonja explains.
Che is in fourth class in Kilcolgan Educate Together.
“I would say they practice inclusion at an exceptional level,” she says.
“I mean he is taken out for his resource hours but he is active and included. The kids treat him like any other kid. They also have a buddy system in place where a different kid hangs out with him or reads stories to him each day and they are nearly fighting to do it. The school is the thing I am most happy with in Che’s life,” Sonja adds.
More importantly, it is also one of the things Che likes best.
“Che is not generally a happy kid well he is frustrated honestly, but he is happy there,” she adds.
Che’s birth was deeply traumatic for mother and baby, and Sonja admits she was totally naive as to what was before her.
“From quite early on I was on my own. I had no clue. I was naive. It was my first child and I didn’t know what the implications were especially because a lot of what the doctors told me in the beginning turned out to be wrong,” she comments.
“I would have been planning a home birth, skin to skin, breast feeding that was my hope but I was overdue and went to hospital for induction. So I would have wanted the least amount of intervention possible and got the most intervention possible and I was in shock and devastated but I clearly remember saying to a friend that I just wanted him to live. I wanted him to stay with me.
“They were waiting for me to be ready to switch the life support machine off then after a few days he started showing signs of doing 17% of breathing by himself. That really surprised them (the medical team). About a week later after coming off life support he would still turn blue. He had no reflexes. I remember that being very strange. He had no movement and no suck reflex.
“I was completely clueless. I don’t know now if I would have done what I did next. I insisted on breast feeding him. The medical professionals were against it but unbelievably he latched,” she says.
Since then Sonja has volunteered with the Gort Breastfeeding Group which she is something she couldn’t have predicted.
“I don’t think at that point I had ever even seen anyone breastfeeding before but I knew it was very important. Breastfeeding was slow but he had a suck reflex. I wanted to hold him all the time. I didn’t want to put him down,” she recalls.
After three weeks in intensive care when he was feeding and breathing on his own, Sonja took him home to Kinvara.
“I didn’t know there was a word for what I was doing at the time but it was attachment parenting. I breast fed him and held him and kept him close all the time. I was on my own with Che a lot of the time.
“I was told he is never going to move. I was told he is never going to learn, that he is brain dead. But denial was a wonderful thing. When I see people in denial now, I think good luck to them, ‘stay in denial for as long as you need’. It is natural and it is normal. It took me years to process what happened to Che,” she outlines.
Since then Che’s progress has been remarkable and he is living up to his name as a fighter.
“In his first year in the school Che learned how to go upstairs with help. It used to take half the day but he did it. Last year he learned how to come down stairs unsupported. This is the kid I was told would never move,” she explains.
“There is an attitude to kids with disabilities where impassivity is encouraged but I have encouraged Che to be independent minded, and I see that nurtured in Educate Together. They get that he is an individual and they nurture that.”
“We had the incredible good fortune in that the Che’s special needs assistant Anne Veasey taught playschool here. She actually taught my partner when he was in playschool. She had Che when he was in playschool in Kinvara and embraced him there from when he was about three and then when he went to primary school, she went with him as his SNA. So now that means he gets dedicated one-on-one teaching from a natural pedagog who is gifted with kids,” Sonja explains.
“The first year he started school was also the first year of the school and so there were just 20 kids in it so this boy who is sensitive to noise and gets overwhelmed in big crowds found himself in a beautiful little school. It was perfect,” she adds.
Sonja made the decision to send Che to mainstream education after he tried out two playschools, the local one in Kinvara and one for children with special needs in Galway.
“Che seemed very passive when he came back from Galway and more active and animated when he came home from Kinvara. Every child’s needs are different but I think for him the mainstream suited him. Being around children who were developing normally meant that he could learn that behaviour,” she explains.
Naturally there were questions but Sonja has learned to deal with them.
“I recognised that questions were part of it, that as part of my job I had to be an educator. I always prefer people to ask if they have questions rather than keep children away or make judgements. When small children used to ask questions I had a prepared answer I would tell them that when Che was a baby he was very sick and because he had to spend so much time getting better he didn’t have time to learn how to do other things. Now if people ask questions about his condition, I explain that Che doesn’t like me talking about it in front of him but that I would be happy to answer their questions at another time,” Sonja says.
Of course that poses a difficult ethical question for Sonja about whether or not to speak out about their situation but she decided that as an advocate, she had to tell people about Che’s condition and the challenges they face in daily life.
To help Che into the car Sonja had to lift him so Vera Quinlan and Mary Bermingham of the Burren Nature Sanctuary organised a family fun day to raise money to pay to have Sonja’s car adapted for Che.
“It was funny. People who have always been kind to us, and who have some awareness of what it is like for us, the fun day gave people a vehicle to express their feelings about Che. People see me, they listen to me and they care but if someone offers to watch Che for a few hours, they can’t because they might be dealing with life or death situations,” she says.
“I need the car lift because I am five foot one, and Che weights five stone right now. People expressed surprise that I was still lifting him. We raised enough to have the car adapted and maybe even serviced. People commonly believe that there is a grant available to adapt the car but only if the person is over 18, if they are in full time employed or if they are retirement age,” she adds.
For Sonja, the fun day was overwhelming.
“The sprit of generosity and well wishing towards Che at the fun day was phenomenal. We set up a the Facebook page and within four or five days had people liking and sharing it and we had raised half the money we needed for the chair through the online fund and had people contacting me about their own experience,” she outlines.
“Half of the village donated money or resources or time and then came. Even people without kids came and fun days are hard places to be even when you have children! In a way it was like being at a sober wedding, there were so many people at it from the all the different times of our lives,” she recalls.
“To go from being really isolated to thinking I couldn’t go on and being tired and confused and at the end of my rope and trying to get help from people and organisations that can’t or won’t help, to go from that to the whole village, and everyone you know coming out and saying we support you – it was very healing,” she says.
“The whole breast feeding support group from Gort was there and one fellow came up to a friend of mine and said ‘there are a lot of people breastfeeding here, I’m ok with it and all, but is it a flash mob like you see on the telly’,” Sonja laughs.
Che dipped in and out of the fun day because he doesn’t feel comfortable in crowds.
“Che is an introverted kid. He likes school and likes to read and watch DVDs but there are not a huge amount of activities that he enjoys. He won’t entertain himself. He needs one on one all the time but he has friendships and is happy to see people he knows, especially his friends,” Sonja explains.
To make a donation log on to www.gofundme.com/Che-Kinvara or find Che Kinvara on Facebook.