Adopting siblings with additional health needs - James and Bobby's story

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We first started our adoption journey in 2018 then took a break and came back to it in 2019. In training, the adoption team highlighted that there were children looking for their forever family who had additional and complex needs, not only what I would call ‘mainstream’ children.

We were asked what kind of children we envisaged adopting, what they might look and be like. Most people tend to think of ‘mainstream’ children but don’t envisage the children in the system with additional needs who need a loving home and family. This sense tends to develop over time. We are both open-minded people and after a lengthy conversation we decided we were able to offer more to siblings with additional needs.

When we first saw our children’s profiles our hearts melted. We could see our oldest child, our daughter Anna, who was two, had complex health needs, but that didn’t put us off. We felt it was important to read the child’s profile thoroughly and not to be put off; ask questions and try to understand the children’s backstory.

Almost six months passed from when we first saw the children’s profiles to meeting them for the first time. We met our children for a care needs review on our son Nick's first birthday and had an insight into their daily needs. We felt a real sense of connection with them and it helped that we had read the report before we met them, it felt less daunting. We played with them with their toys and spent time with them and went away feeling overwhelmed with excitement.

We started introductions over a 10 day period and then day eight and nine we had two nights of sleepovers, so we had lots of time to spend with them, getting to know them, before placement.

The children came to live with us and for the first two weeks they were as good as gold, as if they were on holiday, but after that we had a tough few weeks. Our social worker offered some solutions and we were able to access a disability social worker who could support us and help us understand challenging behaviour in children with disabilities. This helped us to understand and address some of their behaviours, what they were trying to communicate and where this had come from. This has massively improved their behaviour and we feel much more confident as parents. I would recommend it.

Anna was two when she came to us and has global neurological delay and while she’s coming up to three now she doesn’t meet her chronological age. So although she could sit unaided she was unable to walk. Now she can scoot around on her bottom and can ‘sofa surf’ by pulling herself up on the furniture. She will take steps holding our hands but doesn’t have the core balance to do this unaided.

When we first met Anna she didn’t talk and dribbled constantly. Now she hums and sings and if you ask her something she will answer in her own way, when she chooses to! She is very intelligent and knows how to play with things and get what she wants. She really has come on in leaps and bounds and is a much happier girl. Although she is fed via a gastrostomy, she is beginning to tolerate sips of water and can swallow soft yoghurt. Her difficulty eating and swallowing is due to muscle weakness in her oesophagus. Our hope is that in the future she will be able to sit at the dinner table and take a mouthful of food and feel included, as this is an important part of her socialisation and development.

Anna has a lot of support from different services, including physiotherapy, portage, speech and language and the dietician. Her growth delay could be attributed to an endocrine imbalance and she is undergoing investigations for that. She is also seeing orthotics to help her with some special boots to support her over-flexible ankles and hips.

Both children have facial features that would suggest Foetal Alcohol Spectrum Disorder (FASD) although this has not been confirmed, and they are small for their age. They are both under the care of a paediatrician.

In other aspects they are like chalk and cheese! Nick is nearly 20 months and is thriving. He has a great appetite and is crawling, sofa surfing around, and walking with his baby walker. Apart from his delayed growth, the health professionals have no concerns and he only sees speech and language and the dietician. He is talking and saying little words. He follows the dog around everywhere – he loves the dog! When you are cooking he stands at the door and stamps his feet and shouts for his dinner. He is in a really good routine and will go to bed at 7.30pm and has to be woken up in the morning. He loves his cuddles and is stuck on your hip for the first five minutes each morning, then on the sofa with me to watch children’s TV and finally sits on the floor and plays with his sister. They are both at nursery part-time.

This is the advice I would share from our adoption journey.

I would recommend you do some background reading on children in care who are looking for an adoptive family. There are a number of children with FASD and you need to grasp and understand this – it is not always severe but it can have behavioural complications. Lots of children who have had a really tough start in life will have additional needs due to the nature of their backgrounds.

Many people are very dismissive of a child with additional needs, which feels wrong. Every child needs love and care. But I do think you need to be realistic about what you can manage.

Our children are lucky that I’m a qualified nurse, so I can rise to the challenge of meeting my daughter’s needs around feeding and medical care. But I appreciate that for others this might feel new or scary.

We are both open-minded and I believe that with enough of the right support in place many more people would be a lot more open to adopting a child with needs. However, it can feel quite invasive at first, having health visitors, social workers and hospital appointments, when you are trying to set up a routine.

I think it’s really important to find that balance of not ruling children with needs out but being aware of the challenges.

I would say, stop looking at the need or disability and see the child who needs a loving and happy forever home.