Family Story – Living with Down Syndrome

Noticing the first signs

It was at my 20 week scan that I was first told that there may be something wrong, but they weren’t allowed to tell me there and then what the issue might be, and I had to wait until I saw the consultant a week later. I remember that they wrote this long word on my notes and I didn’t know what it meant, so when I got home I googled it and it came up with Down Syndrome. When we saw the Consultant he picked up the thickening of the neck and sandal gap in his toes. He gave us some options like an amniocentesis or abortion. We only had the weekend to think about it because I was 21 weeks pregnant by then already. But we knew that we were never going to have an abortion so we didn’t want the ‘amnio’ either, and risk having a miscarriage. I think I must have cried every day until he was born.

I was induced at 38 weeks and as soon as we first saw him we knew that he had Down Syndrome. That was a really difficult time for us. We were given loads of leaflets and it all felt really negative. It was as though they were telling us what he was going to be like because he had Down Syndrome, not seeing him as an individual.

Referral to community health services

When he was about 4 weeks we met the Paediatrician. We didn’t really know what to expect and he was so little, I was still really upset at that stage. The Paediatrician did stuff like change the growth charts and stats in his little red book so that they related to children with Down Syndrome. He also gave us information about groups we could attend like Sunbeams at Ilminster Avenue. That was really helpful as I had felt uncomfortable going to groups where there weren’t any other children with disabilities.  It was through Sunbeams that I found out about the Makaton course, which was great. The other parents have been really supportive and we have made lots of friends. The Paediatrician also referred our son for a heart scan, eye test and another hearing test. We saw the Paediatrician every few months from then.

Further involvement and diagnosis

The Paediatrician referred us to other services like Speech and Language Therapy, Physiotherapy and Portage. We met the speech and language therapist when he was 3 months and she supported us with feeding and weaning and stuff. We met the Physio when he was around 5 months and that was good because they checked his legs and development, and gave you stuff you could do with him at home. We also had a Keyworker who was brilliant, more like a friend than anything else. She supported us through it all and she is there if we have any questions. I think we saw the Portage Worker from when our son was about 1. She came every week until my younger son was born; now it’s every 2 weeks. She’s great, she sets targets with you and brings toys to help his development and meet the targets. There is always something to work towards which is good.

What happened next?

Well our son has just started nursery at Ilminster Avenue. We are hoping that our Keyworker will help to support us with getting a Statement of Educational Needs and a referral to the Occupational Therapy Service. I guess at this stage we would like him to go mainstream school if he can. I think children with Down Syndrome shouldn’t be hidden away. If I had known people with Downs Syndrome before I had my son I don’t think I would have been so scared and upset. He is amazing! He’s so funny and is such a character. I think our eldest son got us through, because to him he was just his little brother and he loved him so much, he didn’t see any of the stuff everyone else saw

I wouldn’t change my son for the world, but I would change the world for my son.

(Story details taken 18/3/14)

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