Adjusting to life with a child with special needs
Michelle provides Ethan’s mum, dad and older sister with a variety of support, offering them stability, trust and the chance to feel like themselves again.
In July 2022, Marie’s 36-week scan showed that the size of her body was that of a 40-week pregnancy. This raised concern and a second scan confirmed that Ethan had hydrocephalus, a neurological disorder caused by a build-up of fluid in the brain. Ten days later, Marie had a caesarean section.
When Ethan was born, Marie and his dad, Wing, were allowed a quick cuddle before Ethan was taken to intensive care. At just two days old, Ethan had a tube implanted in the brain to drain away excess fluid.
Three days later Ethan was moved to Southampton Children’s Hospital where he spent eight weeks.
“There was a lot of back and forth visiting Ethan in hospital. He was on the neurology ward, but then he was struggling with his breathing, so they took him to the high dependency unit on the children’s ward.”
Ethan’s older sister, five-year-old Kaitlyn, was desperate to meet her new baby brother, but the hospital rules at the time made this difficult as siblings were not allowed in. The family struggled to help Kaitlyn adjust to having a new baby brother with complex special needs, while also attending Ethan’s many appointments.
“Kaitlyn is very protective of him. She has started to understand more about Ethan, and how he may be slower to learn things than she would like. She has now realised he won’t go to the same school as her and things like that. But she is still determined to help him walk.”
Marie had to give up work to be Ethan’s full-time carer as his special needs and the many appointments at different times of the day made working impossible.
“It was tough at first, getting used to understanding Ethan’s condition, and noticing if and when something is wrong. Now we have learnt and it is easier. We have adjusted well.”
Hydrocephalus runs in Marie’s family, and she sometimes struggles with guilt that Ethan has inherited the condition:
“To start with, I did blame myself a lot. Even though I know it is not my fault. But it is just the guilt that he has the condition. We have learnt to take every day as it comes and not get too ahead of ourselves.”
Ethan’s family was referred to Rainbow Trust by their health visitor and started receiving support from Family Support Worker Michelle in June 2023. Michelle provides emotional, practical and sibling support for the family, visiting them twice a month at their home and taking them out on trips.
Michelle takes Kaitlyn out during the holidays to give her a chance to have some fun, be a regular child and help with her emotional wellbeing and self-esteem.
At Christmas, Michelle took Kaitlyn to a Snowdog Trail in Southampton. Kaitlyn had two hours where the focus was only on her, she was able to run around and chat, and she didn’t have to wait for Ethan’s feeds or any of his care.
The time she spends with Michelle offers Kaitlyn stability and an outlet for her to sit and chat with someone she trusts.
Alongside sibling support for Kaitlyn, Michelle also provides practical support, such as dropping Wing off at Ethan’s eye appointments, picking Kaitlyn up from school, sourcing tickets for the family to be able to enjoy special days out and helping to fill in forms for housing.
However, Marie finds the emotional support she receives from Michelle to be the most valuable. She said:
“Michelle is such a good listener. It is good to have someone like Michelle to talk to.”
Michelle looks after Ethan, taking him out to provide new stimulation and assist with his development, but also so that Marie can have respite, some time for herself or to meet her friends.
Recently, Michelle joined Marie and Ethan when they went to visit a special nursery that Ethan will start at in September, giving Marie a chance to talk to the other mums.
The family also regularly attends drop-in groups run by the Southampton Care team, of which Michelle is a part. These offer a chance for the whole family to have some fun and receive support, to meet other families also dealing with challenging situations, for Wing to enjoy playing table tennis with Family Support Manager Matt and for Marie to relax and focus on her wellbeing and mindfulness.
“I can talk to Michelle about anything, and Kaitlyn loves having her over too. Michelle also spends time with Ethan, and this helps me get stuff done, or do things that I normally wouldn’t be able to do. Michelle is such a big help.”
