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Sinem cares for her son Nico, who is three years old. Nico is the sole survivor of twins,
born twelve weeks early. He has cerebral palsy. Sinem wants to give him the best start in
life. But to achieve this, it’s been crucial to find the right support.
In the first weeks of their lives, the twins needed intensive care in hospital – a difficult
experience for their parents.
When your child is born and he’s in an incubator, or he’s connected to all these tubes, you
do feel very helpless, and you’re not sure what your role as a parent is. You’ve got
all these nurses and doctors telling you what you should do, and you don’t feel like a
parent. For us, it was very important to adopt that role as a parent very quickly.
But with support from the neonatal team, Sinem and her husband Pet quickly began to understand
the vital role they as parents could play.
Just so he feels nice and flat on your body. That’s it – look, he’s holding your
Holding their babies was an important early step. Skin to skin contact has many known
benefits for premature babies, and helps make a powerful bond between parent and child.
When Nico was four months old, he was well enough to go home.
When we brought Nico home, it was really difficult. Obviously, we were delighted to get him home,
having been so long in intensive care, but we just couldn’t do the normal things that
a parent would do. That first year was incredibly difficult, because rather than just being
typical parents that were doing just the normal parent thing, we had to basically take on
the role of being a nurse. And it was really hard, just adjusting to what my role as a
parent was, and for my husband as well.
You see how he’s straight away looking at these…
Caring for him independently was a huge challenge. But with the right support, Sinem found there
was a great deal they could do to give Nico the best possible start.
Any parent can do it, you just need some help. And it is daunting because you’re like,
‘I don’t know how to do it’, but if you’re not sure how to bring out the best
in your child, ask the question, because they’re the experts. So – how should I be communicating?
How should I be getting Nico to make choices? So as a parent, I just think you need to feel
empowered to ask questions.
So if you put things that are orange in a white bowl, he could actually see what he
was being fed…
What I’m doing is I’m learning how I can engage with Nico. I’m learning how to do
it to enhance his development. But you do need support to do that.
Support can come in many forms. Nico wakes frequently in the night. Over time, lack of
sleep was affecting Sinem’s ability to cope.
You need bundles of energy when you’ve got a child with a disability. I’m naturally
quite a positive person, but the sleep deprivation is soul-destroying, and it really makes you
feel like giving up. So it’s really important to find the support that you need to be able
to continue. So in my case it’s been my mum, and now Social Services give me respite
care overnight, which has transformed my life. I now get a night-time carer to sleep with
Nico four nights a week, and I’m a completely different person.
Can we do some rolling, rolling, rolling? Nico’s going to come and find it. Can we
do some rolling, rolling?
With the right support, Sinem is committed to helping Nico enjoy life and reach his full
potential.
This is the way we roll your shoulders, roll your shoulders, roll your shoulders…
These early years are so crucial, you know, until Nico’s five, his brain is growing
at such a fast rate, that my husband and I very much feel that if we don’t do it now,
we’re going to regret it later.
Give me this arm… Good boy! Lift your knee… Good boy! We’re going to roll over…
If you compare Nico to where he was in year 1 to year 3, I think that every one of his
team would say that actually he’s doing really well.
And this arm forward… good boy!
Nico couldn’t see, he was unresponsive, he couldn’t move. And now, he can track,
he can smile, he can eat, he can roll. For me as a parent, you know, to me, we didn’t
even know if he was going to achieve that, so we’re just like the proudest parents
ever, and we need to keep nurturing that, to continue, because Nico’s not reached
his full potential yet, and I just want to give him as much as possible, and I think
that’s how you get results, and that’s why I think parents need the support to be
able to do that.