He has started lashing out and thrashing about in his chair, Lynsey ODonovan says of her 17-year-old son, Jack, who has cerebral palsy and epilepsy. She explains what life has been like since schools shut
When the Government announced the current national lockdown, parents all over the country groaned at the prospect of having to homeschool their children once again.
January is Health Month in The Irish Times. Throughout the month, in print and online, we will be offering encouragement and inspiration to help us all improve our physical and mental health in 2021. See
irishtimes.com/health
Trying to work or keep on top of household chores is undeniably more of an issue when you are also required to answer queries, set up Zoom calls, test spellings and keep children focused.
But imagine what life is like for the thousands of parents who also have children with special needs to look after. After a U-turn that saw the Government go back on its plans for special-needs schools, the latest development will, with luck, see some of them reopen their doors later this week, bringing a beacon of hope to many who are struggling to cope with the challenge of their daily workload.
Lynsey ODonovan is one of those parents. Together with her husband, Cathal, the Dublin woman has four children three daughters, 12-year-old Sophie, 10-year-old Robyn and seven-year-old Katie, and a 17-year-old son, Jack, who has cerebral palsy and epilepsy, and is nonverbal. He also needs to be fed via a tube that goes into his stomach.
ODonovans life was hectic enough before Covid, but when the children went to school she had a few hours to deal with the practicalities of running a household. Now, as in the previous two lockdowns, she is overwhelmed with being on the go day and night.
The ODonovan family
Jack requires 24/7 care, which includes his washing, dressing and feeding, but because he is an intelligent boy, once all of this is done he needs stimulation, she says. He wants you to be sitting beside him all the time, because he understands everything and cant communicate, so gets frustrated and bored. He is a very happy kid in general, but the lockdown has really changed his temperament, and he has started lashing out and thrashing about in his chair. It is really unlike him, and we have taken him to see a psychologist, as we need to try and deal with it before it becomes a learned behaviour and a habit.
In normal times I would get him up at 6.30am to be ready for the school bus at 7.40am, before getting the girls up and taking them to school. They would all be back by 3pm, but I would have had the day to do shopping, housework, prepare the dinner or take Jack to appointments. Now I cant do a single thing, as I have to be by his side all the time.
Because Jack has no school now, he wants attention all the time, and because he is in a wheelchair there isnt really anything he can do for himself. Were taking it one day at a time, but its really full on
Her workload has increased enormously during lockdown, and she is finding it difficult. Because Jack has no school now, he wants attention all the time, and because he is in a wheelchair there isnt really anything he can do for himself, she says. Were taking it one day at a time, but its really full on. I am getting up around 8am, so I can get my head together, and then I get them all up for homeschooling after breakfast. I will do the usual washing, dressing and feeding for Jack, as well as giving him his medicines. Then he has a Zoom class at 10am, but I have to be beside him for this, and it isnt always easy.
Take today, for example. During the class my 12-year-old came in asking me to help her with fractions, then the 10-year-old said it wasnt fair, as she was next in line for help, and, following on from that, my youngest said she needed me to help her with a project on China so it is a bit mental.
My eldest girl asked me the other day if I wished there were four of me to cope with everything, and that is exactly what it would take. And, to top it all, we have just had a big flood in the house. One of the pipes leaked, so weve had to rip up the floorboards we only put down a year ago. So to add to the mayhem, we are now trying to live in a house with all the floors pulled up. Its a nightmare.
Jack ODonovan
As well as looking after Jack throughout the day, helping her daughters with their schoolwork and doing the regular household chores, the Dublin woman isnt getting a full nights sleep, and this, she says, makes things even harder. Because Jack isnt stimulated during the day, he isnt sleeping at night, says ODonovan, who was named Netwatch north Dublin carer of the year 2019. We had an extension built to give him extra space, but because he is incontinent, and often needs changing and turning during the night, the most practical thing was to have him in with us, so his bed is attached to ours now.
Last night we went to bed at 9.30pm, but Jack couldnt sleep, and at 3am we were all still wide awake. Because I get no respite during the day, I am finding it really hard
Cathal brings him up at night, and he sleeps with us, which can be exhausting. Last night we went to bed at 9.30pm, but he couldnt sleep, and at 3am we were all still wide awake. This, in itself, isnt that unusual, but because I get no respite during the day as Cathal is at work, so isnt here to help I am finding it really hard.
The mother of four says that she understands why schools have needed to close but that parents of children with special needs need some respite, as it is too hard to try to deal with everything.
When I heard initially that the Government was going to open the special-needs schools this month, I was in shock, as I couldnt believe that, for once, our needs were being considered, she says. Then, when they changed their minds, I was so angry and upset. I dont remember ever feeling that bad, because it was given to us and then taken away. Normally we plod on and do what we do, but this hurt to the core.
Of course, I would be nervous sending Jack back to school, as I dont want him to catch anything, because he would be so vulnerable, but he does need to be doing something and we need help.
The ODonovan children
The family used to get nine hours of respite from the Health Service Executive a welcome break for everyone, as it allowed ODonovan to get some jobs done and spend more time with the girls and gave Jack, a sociable teen, the opportunity to meet others.
This respite was stopped for a time but has since resumed and the family hope that this, combined with the proposed opening of special-needs schools, will help them and others in the same position. Families like ours find ourselves in this position because we dont look for help and dont want to be begging people to look after our children, says ODonovan. We want to be able to do it and we love our kids so much that we get on with it every day. But this year things have been so difficult, and there are times when we find it very hard to cope.
Jack and his mum, Lynsey
Catherine Cox of Family Carers Ireland says the charity will be available remotely to support families like the ODonovans. Family Carers Ireland is the national charity supporting more than 500,000 family carers across the country who dedicate their lives to caring for loved ones, such as children or adults with physical or intellectual disabilities, older people, the terminally ill or those suffering from chronic illnesses or addiction, she says.
While [Family Carers Ireland] support centres have shut temporarily due to the Covid-19 restrictions, staff are continuing to work with local family carers to ensure that they are not left isolated or without essentials such as food or medicines.