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David Eggboro discovers how fostering a child with SEN offers great rewards despite the challenges

There are currently more than 65,000 children living with almost 55,000 foster families across the UK each day and there is a need for more than 8,000 new fostering families in the UK over the next 12 months. 

Because a disproportionate number of children in care have a physical or learning disability, many foster carers look after a child with additional needs and there is a particular need for more foster carers who have the relevant skills to care for a child with complex needs. The experience of these foster carers is often that the rewards and satisfaction outweigh the challenges and sacrifices. 

Without enough foster families willing and able to offer homes to these groups, some children will find themselves living a long way from family, school, and friends, being split up from brothers and sisters, or being placed with a foster carer who does not have the ideal skills and experience to meet their specific needs.

Overcoming difficulties 

Lesley and Mark Hughes (pictured) are one couple who do foster children with disabilities and currently look after a little girl who is profoundly disabled. They are firmly of the opinion that they gain as much from fostering as she does, if not more.

The couple are frank that fostering the little girl – who they have nicknamed Mrs Moo – is tough, unpredictable and sometimes nerve-wracking. However, they love fostering and get so much from their life with her.

“It’s hard work, of course it is. I don’t think we’ve had a whole night’s sleep since she came to live with us. But we’ve had so much pleasure. She was about 15 months old when she eventually gave us her first smile after she’d been quite poorly in hospital. Her first smile was just amazing and now she smiles so much”, Lesley explains. 

This little girl is the third child they’ve fostered. “You hear of people who’ve been doing it for over 20 years, but we only started four years ago”, says Mark, who also works as a social housing manager in a troubled families unit. “We both decided that we were in a position to help children from backgrounds like these and to offer them love and a secure place to stay.”

The little girl came to Mark and Lesley six months after they started fostering a little boy. They were asked if they could take another baby for a couple of weeks. “She was five weeks old and she’d been infected by the group B streptococcus bacterium so we knew she would have complex needs, but at that stage nobody was sure”, Lesley says. “She did cry an awful lot as if she were in a lot of pain. We had an amazing health visitor, but nobody knew how she would develop.”

“We continued to look after her while an adoptive family was found for her, but nobody came forward”, Mark explains. “It broke our hearts that nobody could see past her disabilities and see the beautiful little girl she really is. It upset us both, so we approached our social worker and asked if we could foster her long-term.”

Dealing with health issues

The girl’s physical and learning disabilities have turned out to be more severe than anyone had anticipated. Now three, she has cerebral palsy and hydrocephalus, she is visually impaired, isn’t meeting her developmental milestones and also has complex health issues, including seizures. She needs a lot of medication and, although she does not need oxygen, her lungs have to be cleared through a tube in her nostrils at least three times a day. “Every day is different”, says Lesley. 

Unsurprisingly, the little girl has had numerous stays in hospital – including a series of prolonged stays in 2017. “She was poorly in August, went in for planned surgery, and then became really ill”, Lesley explains. The girl came out of hospital at the end of September, but was then readmitted at the beginning of December and stayed in over Christmas and New Year. “It was a tough year”, Lesley adds. The family eventually celebrated Christmas with relatives in February 2018 when the girl came out of hospital.

As a result of their child’s health issues, Mark and Lesley, who started out without any medical training, have had to learn a great deal and much of their week is dominated by the medical demands of caring for the girl rather than other, more common, fostering tasks. “You have to be organised. I always keep Thursdays free as our play day with our grandson, but otherwise have a lot of hospital appointments”, Lesley explains. “She and I go from one appointment to another – sometimes as many as three in one day. And there’s more equipment to take with us now she’s getting bigger: the suction machine, nebuliser, catheters and so on, as well as emergency equipment in case of things like a seizure. We’re learning as we go along, as everyone else does who has a child with additional needs.”

The essential support network

The Hughes are very clear that the high level of support they receive from the rest of the team around the child is one of the reasons they have been able to offer such good support to the little girl. “We have meetings every six weeks with the social workers, and during that Christmas in hospital they came up and visited us, just to make sure that we were OK”, says Lesley. “We’ve had some difficult days in the past, but I would never say I feel I’m on my own. I’d pick up the phone and literally call everyone – nurses, the home advisory service, the consultant, any of them.  

“The social workers are amazing too. They all know that this little girl is our priority, and if I phone them asking to be put in the right direction they’ll help. It’s the support for us that we appreciate too. We don’t get a lot of respite, apart from occasional stays at a local hospice – the shortage of respite carers is actually the main thing that we struggle with, because we would need trained nurses and very few are also registered foster carers. So being asked “are you two OK?” is quite important. In fact, our previous social worker has been through so much with us that we’re still friends even though she has retired.” 

Mark adds another point: “It’s been vital for us to have that team around the child, and to build those relationships with social workers and with health professionals. But also, one skill that Lesley has, in particular, is the ability to make a challenge to doctors and nurses. I think it’s important for anyone caring for a child with disabilities to be able to challenge, in a respectful manner, and to get everyone to look at this particular child as an individual.”

The couple also have two grown-up sons living nearby, so their overall support network is a combination of friends, family and professionals that really makes a huge difference. It made it possible, for instance, for Mark, Lesley and their fostered child to be part of their younger son’s wedding. “Mrs Moo was a little flower girl, and a nurse and a carer from the hospice came to help out”, Lesley explains. “They took her to the hospice with them after the wedding, so we could celebrate and relax.” 

An enriching experience

Since their fostered child came to live with them, Lesley and Mark have found that the girl has enriched their lives immeasurably. “She loves to hear our voices – or other children’s voices – she likes our toddler group and she always loves seeing our little grandson, who plays with her”, Lesley says. “She looks very angelic but she’s very rough and tumble; she loves playtime on the floor and she likes music. She gives lots and lots of smiles. People say, ‘you give her so much’ but we say, ‘she gives us more’.” 

About the author

David Eggboro is Media and Communications Officer at The Fostering Network.

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