Fostering a Child with Complex Needs

Last year, mum Katie became a Special Guardian to Lukas, her 12-year-old fostered son who has complex needs. But her journey into Lukas’ life began years before she started fostering, when she cared for another young boy, Damien, at a special needs school. Not long before meeting Lukas, Katie learnt he had the same ellenor nurse as Damien - something which Katie believes was a sign that she and Lukas were meant to be in one another’s lives.

Katie spoke about how rewarding she has found fostering a child with complex needs and shares advice to others wishing to do the same.

Before fostering Lukas, Katie worked at a special needs school helping children with all types of disabilities. During her 15 years there, she met Damien - a young boy with global delays and learning difficulties. Katie quickly became an extension of Damien’s family, and he became a part of hers. Sadly, Damien developed cancer and whilst he was in and out of hospital for chemotherapy, Katie discovered that Damien had an ellenor nurse.

When Damien passed away, Katie felt it was time to move on to new pastures. She left the special needs school and decided she wanted to foster children with complex needs.

“I thought that if I wanted to foster children, now was my time to do it before I get too old,” Katie says with a laugh.

After nine months Katie passed her assessment to become a foster parent and was sent profiles of children needing foster homes. When Katie met Lukas, he was 3 years old and in the care of an ellenor nurse.

“Lo and behold, Lukas’ ellenor nurse was the same ellenor nurse as my Damien had! Damien was my very special boy and I feel that when he had to go, he sent me Lukas as my next very special boy,” Katie beams. Every day for a couple of weeks, Katie visited Lukas in hospital to get to know him before bringing him home. Despite her experience working with disabled children, Katie says it was “quite scary” bringing Lukas home to be solely responsible for him.

 “I really believe that Damien sent Lukas to us,” says Katie.

“I remember that very first day when I brought him home. The social worker was very supportive and told me I was okay. But as soon as she walked out the door, Lukas had a massive seizure! I sat with him on my lap with the oxygen next to us and I had a moment of ‘Oh my goodness, what have I done?!’ At first, it was very daunting.”

Katie says Lukas’ profile detailed his array of existing needs. She knew that his brain damage (likely caused by neonatal sepsis) meant he had cerebral palsy, epilepsy and dystonia. She also knew he had weak lungs (so would have oxygen drops each night), suffered from recurrent chest infections and was nil-by-mouth (and therefore tube fed). Katie understood Lukas would be wheelchair bound, non-verbal, have very low muscle tone and be dependent upon others for all of his needs.

She does, however, admit that Lukas’ epilepsy was more severe than she (and his social worker) initially realised. “Of course, you don’t know if they’re going to get any worse or any better,” Katie continues, but fortunately, help was at hand. Alongside the additional challenges of fostering a child who has complex needs comes extra guidance. “Lukas’ ellenor nurse trained me on how to care for him. They were fantastic.”

“If anyone was just thinking about fostering a child with disabilities, I would encourage it because there is the support there. A lot of people say to me, ‘Oh, I don’t know if I could do what you do’ and I say, ‘You could’ because, at the end of the day, he’s a child first. What we get back from Lukas far outweighs the negative. He’s such a smiley, loving boy who always wants to cuddle you. That’s worth everything.”

Katie doesn’t underestimate the support she gets. “You have to make sure you have that support network around you - from ellenor, family and extended family. The other big help is that anybody who has a child with a disability or illness would benefit from the support of other parents in the same situation.” Since Covid, ellenor’s support circles have taken a pause. “That is what we miss,” says Katie. “Having the meet-ups with other parents who understand what you’re going through. I think you have to live the life to understand it.”

Not for one minute does Katie regret bringing Lukas into her life, but there are things she knows now that she wished she thought of at the beginning. “When he was younger, I suppose I didn’t really think about how much it would restrict our lives.”

“When you have a child like Lukas, your life is very different. You can’t just pop out and do things or go where you want.” Holidays, too, pose a challenge."

“When Lukas was smaller, I could lift him. Now he’s got older and bigger, it’s impossible to lift him without a hoist. Finding accommodation with a hoist is very difficult, which really restricts where we can go.” Katie also has to have oxygen delivered to wherever they go “and unfortunately, Lukas has ended up in hospital the last five times we’ve been away.”

Since Lukas has been repeatedly hospitalised every trip, this year, Katie has decided that they’ll just stick to day trips. “I’m so glad we made so many memories with him when he was younger because we were able to do a lot more with him.”

Truthfully, Katie says, “you can feel a little bit trapped. Because of his disability, there are only a few people who can look after him” so emotional and physical support from others is essential. “What I would say is that, although your life does change, you can adapt to it. It’s just the same as when you have healthy children. You just need to think a little more into the future.” Does Katie worry about anything else in the future?

“I’m 60, I’m not getting any younger and Lukas is getting bigger. I wonder how I’m going to cope when Lukas gets bigger, and I get older. Who’s going to look after him? But then I realise you have to just take one day at a time and make every day count.”