Sharon’s story
Sharon has two children, Elliott and Kaia, who were separately diagnosed with Down’s Syndrome and Dandy-Walker Syndrome. She writes about the challenges she faced navigating the health, care and education system, and explains how Kids’ early intervention helped her children thrive.
Elliott’s diagnosis
Elliott was diagnosed 13 weeks into our pregnancy. Morning sickness was lasting all day and I was tired with worry. When we went in for a routine scan, they found “some anomalies”.
We had a quick blood test, and it came back that we had a one in two chance of having a baby with Down’s Syndrome. This was whittled down even further by a CVS (a pre-natal test). The results took ages to come back but I was at the hospital anyway, so I went to find a midwife to see if they had heard anything.
“I’m sorry, your son has Down’s Syndrome,” she said. Then, without a hint of irony, “Would you like to find out the gender?”
We’d been hoping to find out anyway, as we wanted to know everything about our baby.
Finding information and support
What hit me next was the huge lack of information. All the support pointed towards a termination, which wasn’t on the cards for us. There isn’t a specific care pathway if you “decide to continue the pregnancy” and the information we wanted just wasn’t there.
Luckily, one of my friends also has a daughter with Down’s Syndrome. I asked her to tell me everything, and what she did was much better. She linked me up with online communities, pointed me to the Down’s Syndrome Association website and told me to look up portage and home learning.
These were baffling terms that I had never heard before, so I Googled and discovered that portage wasn’t just transporting cargo. I read about home learning and Kids’ other services in Southwark. It looked brilliant.
Whilst I was still pregnant I emailed Margje from Kids, who put us on the waiting list for the Southwark Portage Home Based Learning service. Then after Elliott was born we met her at Fizzybabes – the physio group for tiny kids. The early days were hard as all services had to be referred to, and there was very little signposting.
“Appointments were relentless and the narrative was all about what Elliott couldn’t do, or what he wouldn’t do. The wonderful thing about Kids was they met him where he was at.”
What the support from Kids looked like
At the beginning he went to the sensory sessions where I met other parents in similar situations. I was supported with his Disability Living Allowance application and we talked about other groups and opportunities. He had surgery on his hands at six months and then home learning started in earnest.
Every Thursday morning, Margje arrived with an exciting bag of toys and showed us how to help Elliott learn. It felt good to have a toolkit of things we could do to help his development, and the fact that the session was delivered at home made Elliott more relaxed and receptive.
The sensory sessions also carried on. Elliott met two of his best friends at these groups; one is in his class at school and I’m sure they will be lifelong friends.
My second pregnancy
Then I was pregnant again. The 12 week scan was a completely different experience – positive. People said congratulations and we were greeted with smiles. Then at the 20 week scan, the hospital staff said, “We just want to double-check something.”
It was a girl, and her brain structure wasn’t quite what they expected. More scans and MRIs were booked, and she was diagnosed with Isolated inferior Vermian Hypoplasia (IIVH), and a Ventricular Septal Defect (VSD). Later that week we learned that it was also called Dandy-Walker Syndrome, of which she had a variant and although easier to say, again there was no information. It’s much rarer than DS, and it can vary so much in how it presents.
I knew exactly what I had to do. Email Margje.
How we’re doing now
Three years on I have two superb kids. Elliott is a well-established member of the school community and loves swimming, hippos and singing and dancing. Kaia is in her final year of nursery school, where she is the smallest in her class but easily the feistiest!
The combination of Kids’ early intervention, information and support for the whole family has been hugely important whilst my children are so little.
Going forward I hope that every parent who has a disabled kid automatically gets more support and a clear and accurate information pathway, a strong network of parents in the same boat, and information on what funding, support and activities are available to them. I had to hunt for it. It should be much easier to access.
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