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.
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 andepilepsy, and is nonverbal. He also needs to be fed via atubethat goes into his stomach.
ODonovans life was hectic enough before Covid, but when the children went to schoolshe 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.
Jack requires 24/7 care, which includes his washing, dressing and feeding, but because he is an intelligent boy, once all of this is donehe 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 timesI 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.
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 wheelchairthere 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, dressingand 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.
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.
Cathal brings him up at night, and he sleeps with us, which can be exhausting. Last nightwe went to bed at 9.30pm, but he couldnt sleep, and at 3amwe 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 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 yearthings have been so difficult, and there are times when we find it very hard to cope.
Catherine Coxof Family Carers Irelandsays 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.
Read this article:
Will special needs classes reopen? There are times we find it very hard to cope - The Irish Times
- Man With Cerebral Palsy Imitates Michael Phelps Rule Yourself Video - SwimSwam - March 24th, 2017 [March 24th, 2017]
- Baby Connor McCue diagnosed with cerebral palsy - months after successful liver transplant - Stoke Sentinel - March 24th, 2017 [March 24th, 2017]
- Fundraiser for local teacher with cerebral palsy takes off - Longview Daily News - March 24th, 2017 [March 24th, 2017]
- Rockford athlete with cerebral palsy trains for IRONMAN World ... - Fox17 - March 24th, 2017 [March 24th, 2017]
- Andrew Spencer: Norwood teen with cerebral palsy found safe after ... - WCPO - March 24th, 2017 [March 24th, 2017]
- I'm Celebrating Cerebral Palsy Awareness Month For the First Time ... - TeenVogue.com - March 24th, 2017 [March 24th, 2017]
- Cerebral palsy Overview - Mayo Clinic - March 24th, 2017 [March 24th, 2017]
- Local 22-year-old girl with Cerebral Palsy to get free chair lift - 13newsnow.com - March 25th, 2017 [March 25th, 2017]
- Missing 13-year-old with cerebral palsy found safe - WLWT.com - WLWT Cincinnati - March 26th, 2017 [March 26th, 2017]
- Cerebral Palsy | The Mighty - March 26th, 2017 [March 26th, 2017]
- Cerebral Palsy Overview - Cerebal Palsy Guidance - March 26th, 2017 [March 26th, 2017]
- Cerebral Palsy Group Support and Resources for Cerebral Palsy - March 26th, 2017 [March 26th, 2017]
- Teen with cerebral palsy earns spot in state finals for track and field - 7News - WSVN-TV - March 27th, 2017 [March 27th, 2017]
- Parma mother of child with Cerebral Palsy gets unexplainable water and sewer bills - newsnet5.com - March 27th, 2017 [March 27th, 2017]
- Living with cerebral palsy - TheChronicleHerald.ca - March 28th, 2017 [March 28th, 2017]
- Cerebral palsy couldn't stop Gillian from finishing eight remarkable races - Belfast Telegraph - March 28th, 2017 [March 28th, 2017]
- Life's Equation Book Signing for National Cerebral Palsy Month - FOX31 Denver - March 28th, 2017 [March 28th, 2017]
- Montrose cerebral palsy sufferer reaches impasse with Angus Council - Montrose Review - March 30th, 2017 [March 30th, 2017]
- Living with cerebral palsy, he's also become 'The Dude': a food critic - MyAJC - March 30th, 2017 [March 30th, 2017]
- uOttawa students engineer foot-controlled TV converter for man with ... - Ottawa Citizen - March 30th, 2017 [March 30th, 2017]
- Cerebral palsy children's home receives a face-lift - Rising Sun Overport - March 30th, 2017 [March 30th, 2017]
- Youngstown news, Taekwondo helps 13-year-old with cerebral palsy - Youngstown Vindicator - March 30th, 2017 [March 30th, 2017]
- Man born with Cerebral Palsy thanks Michael Phelps for teaching ... - WOTV4women.com - March 30th, 2017 [March 30th, 2017]
- Cavs ticket winner gives prize to 10-year-old with cerebral palsy - fox8.com - March 30th, 2017 [March 30th, 2017]
- 12-Year-Old with Cerebral Palsy Meets His 'Hero' John Cena: 'My Heart Melts,' Says Dad - PEOPLE.com - March 31st, 2017 [March 31st, 2017]
- Norfolk family's video of son with cerebral palsy goes viral - 13newsnow.com - March 31st, 2017 [March 31st, 2017]
- Milton Boxer With Cerebral Palsy Remains Undefeated - CBS Boston / WBZ - March 31st, 2017 [March 31st, 2017]
- Chase High hosts Cerebral Palsy Awareness Day | News ... - The Daily Courier - April 1st, 2017 [April 1st, 2017]
- 'That Stroller Is Peyton's Life,' Special Wheelchair Stolen From Girl With Cerebral Palsy - CBS New York - April 1st, 2017 [April 1st, 2017]
- John Cena meets 12-year-old fan with cerebral palsy - My Fox Boston - April 1st, 2017 [April 1st, 2017]
- Cerebral Palsy - Cerebral Palsy - April 1st, 2017 [April 1st, 2017]
- Blazing New Trails: Updates in the Care of Children with Cerebral Palsy - Wayne County Journal Banner - April 2nd, 2017 [April 2nd, 2017]
- Cerebal Palsy An Overview of Symptoms, Causes, and ... - April 2nd, 2017 [April 2nd, 2017]
- John Cena meets 12-year-old fan with cerebral palsy - WPXI Pittsburgh - April 3rd, 2017 [April 3rd, 2017]
- Tri-Cities 12-year-old with cerebral palsy meets his hero, John Cena - WJHL - April 3rd, 2017 [April 3rd, 2017]
- Cord blood stem cells offer promising treatments for Cerebral Palsy - April 4th, 2017 [April 4th, 2017]
- This 3-Year-Old With Cerebral Palsy Is Spreading Awareness In Style - Huffington Post - April 5th, 2017 [April 5th, 2017]
- Govt Urged to Make Special Provision for Children with Cerebral Palsy - THISDAY Newspapers - April 5th, 2017 [April 5th, 2017]
- Topsham student with cerebral palsy launches road race - The Forecaster - April 5th, 2017 [April 5th, 2017]
- Students design 'Chandler's Chariot' for boy with cerebral palsy - WBAL Baltimore - April 5th, 2017 [April 5th, 2017]
- WWE star John Cena surprises young fan with cerebral palsy in heartwarming video - Globalnews.ca - April 5th, 2017 [April 5th, 2017]
- Cerebral Palsy (Center for Cerebral Palsy) | Gillette ... - April 5th, 2017 [April 5th, 2017]
- 'Cerebral palsy will never stop me from being successful' - Evening Telegraph - April 7th, 2017 [April 7th, 2017]
- Otte student proposes cerebral palsy awareness event | Local News ... - Blair Enterprise Publishing - April 7th, 2017 [April 7th, 2017]
- Cobb trampoline park adds events for those with autism, cerebral ... - Atlanta Journal Constitution - April 7th, 2017 [April 7th, 2017]
- The Heart of a Champion: Riverside student battling cerebral palsy gets surprise of a lifetime - San Benito News - April 8th, 2017 [April 8th, 2017]
- Princeton Ethics Professor Defends Woman Convicted of Raping ... - Christian News Network - April 8th, 2017 [April 8th, 2017]
- Nine-year-old cerebral palsy patient is guest of honour at unveiling of Co-op revamp - Nottingham Post - April 8th, 2017 [April 8th, 2017]
- Perth woman with cerebral palsy faces losing driver's licence after 36 years - ABC Online - April 8th, 2017 [April 8th, 2017]
- Cerebral palsy may be linked to birth weight - Independent Online - April 8th, 2017 [April 8th, 2017]
- Cerebral Palsy's Kate Laver tennis invitational - The Desert Sun - April 8th, 2017 [April 8th, 2017]
- Gurgaon: Doctors come together to treat Cerebral Palsy in children ... - Hindustan Times - April 11th, 2017 [April 11th, 2017]
- Teen takes best friend with Cerebral Palsy to prom - Story | WNYW - Fox5NY - April 11th, 2017 [April 11th, 2017]
- No compensation for girl left with cerebral palsy in 'tragic' home birth ... - Echo - April 11th, 2017 [April 11th, 2017]
- No compensation for girl left with cerebral palsy in 'tragic' home birth as top judge rules midwives 'could not have ... - Echo - April 11th, 2017 [April 11th, 2017]
- Man with cerebral palsy is memorable in more ways than 1 ... - Washington Times - April 12th, 2017 [April 12th, 2017]
- White Sox announcer gives play-by-play on finding success with ... - CNN - April 15th, 2017 [April 15th, 2017]
- Grandmother takes on epic Everest trek for grandson with cerebral palsy - Taranaki Daily News - April 15th, 2017 [April 15th, 2017]
- Rare surgery helps kids with cerebral palsy walk - KHOU - April 15th, 2017 [April 15th, 2017]
- Princeton Ethics Professor Defends Woman Convicted of Raping Man With Cerebral Palsy - GOPUSA - April 16th, 2017 [April 16th, 2017]
- Parents promote partial OHIP funded life changing cerebral palsy U.S. surgery - insideTORONTO.com - April 16th, 2017 [April 16th, 2017]
- Cerebral palsy girl Molly Grace helped in Facebook appeal - BBC ... - BBC News - April 16th, 2017 [April 16th, 2017]
- Students create cerebral palsy toothbrush - Bangalore Mirror - April 18th, 2017 [April 18th, 2017]
- Dad's Facebook Appeal To Find Feeding Tube For Daughter With Cerebral Palsy Is Huge Success - Huffington Post UK - April 18th, 2017 [April 18th, 2017]
- Cerebral Palsy can't stop me from surfing - News24 - April 18th, 2017 [April 18th, 2017]
- Heartland man with cerebral palsy inspires others in his quest to walk - WOWT - April 19th, 2017 [April 19th, 2017]
- Derby-themed party races to help cure cerebral palsy - MDJOnline.com - April 19th, 2017 [April 19th, 2017]
- Five-year-old with cerebral palsy making strides thanks to surgery in Ohio - WKEF ABC 22 - April 20th, 2017 [April 20th, 2017]
- Greek Week Raises Over $50,000 for Cerebral Palsy Awareness - University of Miami - April 21st, 2017 [April 21st, 2017]
- 5-year-old girl with cerebral palsy takes her first steps thanks to miracle surgery - AOL - April 21st, 2017 [April 21st, 2017]
- Wellington Rotary Club to post Outrun Cerebral Palsy 5K - Palm Beach Post (blog) - April 21st, 2017 [April 21st, 2017]
- Surgical Procedure Can Reduce Pain, Improve Mobility For Children With Cerebral Palsy - CBS New York - April 21st, 2017 [April 21st, 2017]
- Amazing Women Series: Mother in 'constant awe' of triplets - Canadian Jewish News (blog) - April 24th, 2017 [April 24th, 2017]
- 1st annual Madoc walk for cerebral palsy - www.insidebelleville.com/ - April 24th, 2017 [April 24th, 2017]
- Willard senior with cerebral palsy to compete in national speech tournament - Springfield News-Leader - April 26th, 2017 [April 26th, 2017]
- Meet Dr Amitabh Mehrotra, who defeated cerebral palsy to start a school for children with disabilities in Lucknow - YourStory.com - April 26th, 2017 [April 26th, 2017]
- Watch Marijuana Help This Girl With Cerebral Palsy And Autism - The Fresh Toast - April 26th, 2017 [April 26th, 2017]
- Young N. Idaho inventors adapt car for child with cerebral palsy ... - KTVB - April 27th, 2017 [April 27th, 2017]
- Patrick Barden set to complete London marathon with cerebral palsy - Metro - April 27th, 2017 [April 27th, 2017]
- Cerebral Palsy sufferer, Patrick Barden, from Shorne, completes London Marathon - Kent Online - April 30th, 2017 [April 30th, 2017]