Menna, mother of Cerys who was born with Down’s Syndrome, talks about the lack of support, emotional and financial from birth onwards.
I’m Menna, I am a single parent. When I found out I was pregnant, the relationship was over. I had no support and direct family support is minimal as my family live far away.
I didn’t know that Cerys was born with Down’s Syndrome until she was ten days old. The hospital just gave me a leaflet. No-one really discussed it with me. I was in a room by myself. The midwives were fine, but they didn’t know enough about Down’s Syndrome themselves to be able to discuss it with me. There was no one able to sit down with me.
We got referred to specialists to check her hearing and heart and everything else. I felt alone, there was nothing. I was just handed this baby and left alone. Obviously, being a new parent is scary in itself, without finding out that you have a disabled child. I was just left to get on with it.
The consultant we saw said that Cerys will possibly always have the mental age of 13. That was all she said really. There was no advice about her having Down’s Syndrome. There was nothing they could really tell me.
I couldn’t see a future for her
There is no disability in our family. I didn’t know anybody with a disability. I just remember thinking, I couldn’t see a future for her.
They actually gave me a DVD to watch, which was no help whatsoever. It didn’t reassure me at all. In fact, it made me feel worse. The DVD was all about young children and toddlers, nothing about the future. I wanted to see older children and adults rather than babies. I had my baby and I wanted to know that the future was going to be okay. I needed a bit of reassurance really, which I didn’t get.
I just kept plodding on
There were no local support groups. I don’t drive. It made things hard. There are no support groups at all in my area.
I just kept plodding on. I did have a close friend who had a little boy, without a disability, who were quite close. Obviously, her experiences were different to mine.
You feel a bit vulnerable. Cerys was slower with everything. Things like eating solids, I couldn’t just give her solids because she would have choked. It was quite difficult. She was probably 18 months old before she started experimenting with food. I worked that out myself.
It’s been a case of trial and error. Obviously, I had friends who had children so I learnt from them, rather than specialist advice.
There is nothing when they are babies
When Cerys was a toddler, I started to have specialist support coming out to meet her for things like physiotherapy. Probably from about nine months old. In the early years, there is nobody.
Once you get the Disability Living Allowance [this is now Personal Independence Payment] you get other support like carer support. Financially there is nothing. If you have a disabled baby, there is nothing when they are babies.
I applied for Disability Living Allowance for her when she was a baby but got refused. They said she was no different to any other baby. Although the hospital appointments begged to differ. There was no financial support until she was three.
I was advised not to go on the internet and not google because of the wrong advice I would be given. If I needed any advice, I would go through the Down’s Syndrome Association. If I had a specific problem, they were good.
Any support you can get, grab it
In the early years you should look for help if it’s out there. That’s what I lacked. Not getting the help and support from anybody. And if there are support groups, try them.
Any support you can get, grab it with both hands. I have noticed that as my daughter has gotten older, that the support has gotten better, but I still think that they do fail parents.
Cerys is beautiful inside and out
As a teenager, Cerys is no problem whatsoever. She has her moments, like any other teenager, but she is better than any other teenager.
She is amazing. She is funny. She is beautiful inside and out. She’s caring. She’s just the most beautiful teenager you could ever meet. You get the stroppy teenager, there is none of that. She is a lovely child. She always has been.
Cerys loves dancing. She loves posing. She had a couple of photoshoots. She is beautiful. I know you are biased as a parent, but so many people have said what a beautiful girl she is. She would love to go into something like that. I am looking into her going into modelling at the moment, but I don’t want to put her on the road to being rejected. Apart from that, she would love to be a model. She is amazing.
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