Grace’s story
Grace is mum to Emmanuella who was born prematurely at 26 weeks and has cerebral palsy, requiring specialised care.
Grace explains the challenges they faced and how Kids’ portage home-based learning service has helped them.
Emmanuella’s diagnosis
Emmanuella was born in 2019 and came about 26 weeks early. She was in hospital for around three months, and eventually she was diagnosed with cerebral palsy. We had other challenges added to that too, like respiratory issues.
Support in the early years
When she was a baby and was discharged, the community did help. Sunshine House was involved, the speech and language, the physios and they eventually brought in Margje from Kids portage service, and that really helped. They did activities with Emmanuella where I learnt how to play with her and what to do.
Charities like Kids really benefited us and gave me that respite and peace of mind, knowing that Emmanuella can go out and about, experience different activities with other kids.
“Charities like Kids really benefited us and gave me that respite and peace of mind, knowing that Emmanuella can go out and about.”
Finding the right nursery
It was not up until 2021 that Emmanuella eventually had a space for a nursery. When they found the nursery, the next phase was to train the staff regarding Emmanuella’s needs, like her feeding, suctioning training and the wheelchair she uses.
It was really difficult because it was just back and forth, back and forth. Who is doing this, who is doing that? She got the placement in September and she didn’t start school till February/March.
Positive difference
When she started nursery, there was a difference. Her face tells me a lot when she’s in nursery. She was able to socialise with the other kids, even though she was non-verbal, you could just see her eyes. It was really telling a lot which was good.
Balancing work and care
There was no way I could look for work back then because Emmanuella is really hands on and she needs to be with an adult 24 hours. Who do you want to leave your child while you go to go work?
If you want to look at getting somebody you’re going to be paying through your teeth and they have to be fully trained with all of Emmanuella’s requirements.
But even now, going back to work I had to push myself. Now, Emmanuella is in school full time, but I still have the appointments. Being a single mum, you still need to take her if they call you.
All this needs to be put into consideration. Even though I’m currently working, there’s still lots of hurdles, because you need to let your employer know that this is the situation.
It’s really not easy, but you just need to keep pushing.
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