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'Caring for our own son with special needs has given us a knowledge you can't learn from a book, now we want to foster other children like him'

Having dedicated 28 years to looking after their son Adam, who has a rare form of epilepsy, Lynne and John McKenzie, from Co Down, realise the importance of respite breaks for parents of children with disabilities. They tell their story to Lisa Smyth

Caring couple: Lynne and John McKenzie with son Adam
Caring couple: Lynne and John McKenzie with son Adam

Being a parent is a hugely demanding and exhausting job. But being the parent of a child with complex medical needs is all-consuming.

For 28 years, Lynne and John McKenzie have dedicated every waking moment to caring for their son, Adam, who was born with a rare form of epilepsy.

Lynne, who turns 62 this week, even gave up a well-paid job at Short Brothers 20 years ago to look after her youngest son.

"Adam has a condition called Lennox-Gastaut syndrome, which means he has multiple different types of seizures," she explains.

"These happen on a daily basis. It's a very severe form known as intractable epilepsy, but he wasn't actually diagnosed until he was about six.

"It's a condition he was born with and it sort of grew with him.

"Because he was my second child, I just knew from when he was about six or eight months, that there was something not right.

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"He kept taking these wee episodes, but I didn't know what it was.

"I was running back and forward to the doctor and he couldn't explain what it was either, because he never saw Adam having one of these episodes.

"Then, when he turned one, he had a full-blown seizure."

Lynne and Adam having fun around the house
Lynne and Adam having fun around the house

Lynne and John (62) rushed Adam to hospital and he was kept in for observation overnight.

However, he had no further seizures and was sent home again.

Unhappy with their son's condition, the couple, who live outside Ballygowan in Co Down, took him back to hospital.

Lynne continues: "Adam took another seizure in front of the doctors once we got him to hospital and everything changed.

"He lived in the hospital for six months, which was very, very difficult at the time because we have another son, Edward.

"The doctors told us that Adam's condition was severe and the outlook wasn't very good, they said he might not reach his teens.

"There was one point in time where they told us we had lost him, it was in his early teens, and he was in intensive care on life support.

"He took a really bad seizure and they couldn't get it stopped, so they had to put him on life support. They gradually tried to take him off the life support, but when they did he started having another seizure, so they had to put him back under.

"It was a horrendous time, but he's still here and he's 28, although of course we know he could go at any time, any seizure could take him."

Lynne and Adam having fun around the house
Lynne and Adam having fun around the house

As a result of his condition, Adam has suffered extensive brain damage and has the mental capacity of an 18-month-old.

It has meant many challenging times for Lynne and John over the years.

"I worked in human resources in Short Brothers and I had to give that up when Adam was about eight," continues Lynne.

"Our income went down by about 60% because I had a really good wage, so it was hard.

"Adam's condition had become so severe that he needed me at home.

"It was very tough, but we had to learn to cope and Edward, who's 32 now and married with three children, has always been excellent.

"He was always so supportive, when we were going through all the problems, he never gave us any bother."

John, a civil servant, says: "There isn't really a day where Adam doesn't have a seizure.

"He might have just one or two or he could have a lot more in a day and then there are occasions where he would have a really bad one.

"The thing is, there's no warning, he could be as happy as anything one minute and the next minute he has a big seizure and that's where he can get himself hurt."

For the majority of Adam's life, Lynne has provided most of his care herself - the only break coming in the form of sporadic respite care for her profoundly disabled son.

More recently, Lynne agreed to accept help from community care assistants after she and John injured their backs while lifting Adam.

Lynne and Adam
Lynne and Adam

Lynne explains: "Up until about four years ago I managed on my own, but we had to get carers to come in the morning to help me.

"I'm only 5ft 2in and Adam is over six feet and if he decides he wants to lie on the floor I can't get him up into his wheelchair.

"Adam is very social as well, he loves company, and he loves the carers coming in to see him."

But it is the respite breaks that have been invaluable to the family.

John says: "I'm not the type of person who suffers much with my mood, but then I suppose if you aren't getting respite it would be very easy to go down that route."

And yet, despite the fact they know how important respite is to their marriage, the couple admitted it is difficult when Adam is away.

John explains: "We had to learn what it was like not to have him in the house, it's very strange."

Lynne continues: "Adam's been going to respite for years but, believe it or not, it never gets any easier.

"You feel guilty, you feel terrible leaving him off, but you need time together.

"A husband and wife need time together and we always make a point of spending the afternoon together when Adam is in respite.

"John works very hard and when he isn't at work, he helps me out with Adam, so he needs a break as much as I do.

"It's so important, carers need time to rest, time to recharge their batteries, Respite is crucial."

With this in mind, Lynne and John have made the incredibly selfless decision to become foster carers for children with special needs.

They are two of the 331 foster carers caring for more than 400 children in the South Eastern Trust area.

It is also believed that they are the first couple in Northern Ireland who are parents of a child with special needs and who have registered to become foster parents.

Given their own situation, they are unable to provide full-time foster care, but they offer respite places to give other foster parents a much-needed break.

They have already welcomed one child with special needs into their family and they are looking forward to offering respite to a second child with special needs.

"It's so rewarding," continues Lynne.

"We know that we are helping other people who are just like us.

"We can't foster full-time because of our own circumstances, but that doesn't mean we can't give up some of our time.

"Actually, the way I see it is I am at home with Adam anyway, so I might as well have another child here too.

"I feel like we all benefit, because Adam loves it too; like I said, he loves company, he loves it when our grandchildren come round and he's really enjoyed having another child in the house."

Of course, with their extensive experience of caring for their own son, John and Lynne are ideally placed to foster children with special needs.

John explains: "We have a knowledge that you can't learn out of a book or in a classroom.

"We've also spent a lot of time doing up the house so it's suitable for Adam.

"We used to live in a lovely four-bedroom semi, but it wasn't going to be practical so we had to buy a bungalow. It was only one step up from derelict and we've spent the last 20 years doing it up, making sure it is safe for Adam.

"Our kitchen was open plan and when Lynne was cooking, I would have to walk up and down to stop Adam getting to the cooker.

"There was one occasion when Lynne asked me to get something for her and, in a split second, Adam was over at the oven opening the door.

"I had to grab him by the scruff of the neck, otherwise he would have been in the oven.

"We ended up putting on an extension to the house so we could section all the dangerous parts of the kitchen off, it cost £37,000 and we paid for about two thirds of it.

"Then as well, when Adam was young, he went to Tor Bank School, which was very good.

"They taught the pupils that they had to clean up after themselves, so if they had something to eat they had to put their plate or cup or whatever in the sink.

"It got to the point where you couldn't put anything down in the house, because Adam was putting everything in the sink.

"I can't tell you how many mobile phones we have lost over the years because they've gone in the sink or the bin.

"It's little things like that, we have experience of working with a child with special needs and we understand what is required."

Looking to the future, both John and Lynne are remarkably pragmatic, which is one of the main reasons that they are encouraging other people to sign up to offer respite care to children with special needs.

John explains: "Lynne and I are both in our 60s, it's not like we're in our 40s anymore.

"We don't know how much longer we will be able to do this for.

"We are making a difference to people and that's what's important, because we know what a difference the respite makes to us."

A spokeswoman from the South Eastern Trust says: We are delighted that Mr and Mrs McKenzie have responded to our need for foster carers.

"Foster carers are urgently required across Northern Ireland to provide short or long-term care.

"We welcome enquiries from anyone who is interested in providing a caring home for our children and young people."

The spokeswoman says more information about fostering in the South Eastern Trust is available from the fostering duty officer by ringing 9127 0672.

In total, there are more than 3,000 children and young people in foster care in Northern Ireland.

NI health trusts are looking for your help

The five health trusts are responsible for the welfare of all looked-after children in Northern Ireland, so they are in the best position to place children and young people with foster carers.

They are always on the look-out for potential foster carers who are patient, understanding, compassionate and flexible.

You can apply to foster whether:

• You are married, have a partner or are single.

• You have children of your own, or not.

• You are in employment or claiming benefits.

• You own or rent your own home.

If you would like to find out more about fostering, log on to www.adoptionandfostering.hscni.net.

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