World Down Syndrome Day
With everything going on in the World, and a few unsettled weeks, we missed sharing and supporting Downs Syndrome day this year. So, to help celebrate, we asked Sarah (one of our fabulous buddies) if she would mind writing a blog about family life with the wonderful Zephy.
You’ll probably recognise Zephy from some of our pictures online! Sarah is one of our newer buddies so be sure to follow her on IG (@chromosomes_and_curls) and give her a wave in Facebook Hangout!
My son Zephaniah, or Zephy for short as he is usually known, was born on Boxing Day 2016. We had been given a prenatal diagnosis of Down syndrome so had spent a lot of the pregnancy in fear of the unknown, or more accurately, what we thought we knew. This was based on outdated perceptions, stereotypes and probably a bit of stigma. I wasn’t sure how I was going to feel when he was born, I was worried about his health of course also as some clinical conditions can be common in people with Down syndrome.
When Zephy was born lots of my fears washed away when his needs were just like any other baby. He was and still is very healthy. He had no issues found when he was born.
We breastfed, used our cloth nappies and slings, went to all the usual baby groups etc. We had extra things to do of course also… more appointments, they checked his sight and hearing more that a typical baby and he has a community paediatrician he sees once a year. He used to have physio, and see a play therapist also which was great fun.
His early milestones were met at a similar time to his peers. He sat at around 6 months, started solids at 7 months and has always fed himself. He started to commando crawl at 9 months. After this he started doing things on his own timeline. He crawled on his hands and knees at 14 months and walked just after he turned 2.
He started nursery just before he turned two which was great for his development. He loves it there and all the staff adore him.
We started doing makaton (sign language) with Zephy from 6 months and at 12 months he started to sign back to us. It’s been wonderful having a way to communicate with Zephy whilst he is preverbal. He is able to communicate the majority of his basic needs using sign at the moment which saves many frustrations. He can string together 2 or 3 signs to make mini sentences. It’s something that we have learnt as a family so we can all communicate with him.
Zephy became a big brother to identical twin girls last year. It was a shock to hear we were having twins and I was worried how I’d cope with twins plus a child with additional needs but we manage. The hardest part is that although he can walk around well indoors, outdoors and with shoes on is much harder for him so he needs a buggy full time still.
Zephy has been signed to Zebedee Management, which is a modelling agency that specialises in children with disabilities since he was a baby and has been in a supermarket tv advent and has taken part in a few photography awareness campaigns for Down syndrome which has been so much fun.
I started a blog to raise awareness around Down syndrome and what our life is like. Thats something I don’t think I would ever have done before Zephy came along!
Zephy is now 3. In many ways he is exactly like other 3 year olds. He loves peppa pig and paw patrol, he loves playing in the park on the swings. At hone he loves his TriClimb and Miri and lots of our other toys from Babipur. His favourite foods are pasta, crisps and potatoes in any form. He loves to play with his sisters. We knows his colours and we are working on counting and on his numbers and are planning on potty training in the next few months.
In other ways he’s very different, he doesn’t verbally speak yet but knows hundreds of signs. That’s great for us but hard when he’s around other people who don’t realise he is signing and underestimate him a lot. His face lights up when someone signs back to him or show they understand him. He doesn’t really walk that great outside. He can, but often won’t so we use a buggy or a sling for him most of the time. We spend time each day doing therapy work with him working on his speech and communication.
Having Zephy has completely changed our lives. I feel privileged to be part of such a wonderful community. There is so much love and support and positivity out there. I have made so many friends in real life and online so I feel very lucky. There are some amazing support groups out there such as Wouldn’t Change A Thing (Zephy is in their latest awareness video) and is one of their 2020 ambassadors and Positive About Down Syndrome who offer amazing support to pregnant families and new parents via their website and Facebook groups.
Massive thank you to Sarah for writing this blog for us. Here’s a link to Sarah’s own blog – Chromosome and Curls
#WDSD20
