A Day in a Life with Downs Syndrome

When her daughter, Hattie, was born with Downs Syndrome, Robyn Perriss discovered a whole new world of support, particularly through the charity Sparkles.  On World Downs Syndrome Day, she talks about how life has changed since Hattie arrived …

I found out my daughter had Downs Syndrome when … A few hours after she was delivered in hospital the doctors broke the news to us that they thought Hattie had Downs Syndrome, although we had to wait for chromosomal tests for definitive confirmation.  Around one in every 800 live births in the UK (and worldwide) is a baby born with Down Syndrome.  I had all the pregnancy screening tests - my odds were one in 1000.

Her characteristics that are typical of Downs Syndrome are … almond shaped eyes (with an extra twinkle), a broad short neck, hypotonia (decreased muscle tone), sandal toe, a larger tongue (perfect for making silly faces), but mostly she looks just like her family members!

The impact on our daily lives is … Hattie is a typical two year old who loves playing with friends, riding her push along, teasing the dogs, eating ice-cream,  and copying her big sister (because sisters don’t count chromosomes), but things do take a little longer as she has delayed speech and cannot always express herself clearly.  We all use a sign language called Makaton(like Mr Tumbles from Something Special) and have all learnt to slow down and be much more patient.

The biggest obstacles are … Hattie needs support from a range of specialists - physiotherapists, speech and language, paediatricians, and occupational health to name a few, and in the early days it took a lot of time to get my head around all her needs as well as the frequent appointments and trips to hospital, but life has now settled into a new normal.

The best thing I have learned is … to take time to enjoy the present. Hattie can’t remember what happened yesterday or understand what is likely to happen tomorrow, which keeps me very grounded in today.  I have also learned that Down Syndrome can happen to anybody and along this journey I have made some wonderful friends who I otherwise might never have met.  There is a lot of support and some wonderful charities out there to help.

Other people can help by … challenging their attitudes and perceptions.  I believe that through education and inclusion the prospects for Hattie are bright. Society places great emphasis on so-called perfection, but is anybody really perfect?  In our desire for perfection we lose diversity. Difference is what makes the world so great!  People with Downs Syndrome might look different because of their physical characteristics, but inside they are more like you and me than ‘different’.

The best advice anyone has given me is … shortly after Hattie was born the Downs co-ordinator at the hospital said to me it won’t be long before you just see Hattie and not the syndrome and this has proved so true!

My advice to anyone whose child has just been diagnosed is … read the wonderful poem Welcome to Holland by Emily Perl Kingsley as you too will grow to see and love these very special people.  Also, reach out to the charities such as the Downs Syndrome Association and The Future of Downs, and speak to real people who have stood in your shoes. They will tell you its hard work, but the rewards are worth it!

The thing that makes me feel on top of the world is … Her gorgeous smile at the end of a long day.