Raising a child with Down's Syndrome

Our fourth child, Johanna, was born in March 2000. I was almost 45, so I knew I had a significant risk of having a child with Down's Syndrome. I'm a natural pessimist so I waited anxiously for the midwife to pronounce that she was "OK". Everything seemed to be normal, so I breathed a sigh of relief.

It wasn't until next day, after the doctor's round, that we were told they thought Johanna had Down's Syndrome.

It's difficult to describe how we felt at that moment. My husband, Barry, is an optimist and was quite shocked. I had already sensed something different about Jo - she seemed unusually floppy and sleepy. So maybe I found it easier to accept.

All through my pregnancy I had been aware of the "risk". I'm quite sure God had been preparing me. Somehow Down's Syndrome had kept coming up on TV, in what I read and in conversations with others. Only a month before Jo was born I remember explaining to the boys about the chances of me having a child with Down's Syndrome. I'd said that if that happened we would just love her and care for her just the same. And that's what we did.

The hospital gave us a private room. I stayed in for 5 days and worked at getting Jo to breast feed, whilst medical staff did various tests. Barry probably had to do the hardest job. He had to explain the situation to our older children, the elderly grandparents, and other relatives and friends, only 24 hours after breaking the initial joyful news.

Our elder daughter was old enough to be aware of the implications and was naturally anxious. She remembers it felt like someone had died. The sister she was expecting had vanished. In her place was someone she wasn't prepared for and didn't know how to handle. She wasn't sure what effect it would have on our family's way of life.

Our younger son says that at the time, he didn't really understand what it was all about. The elder one felt sad that his sister would have to live with the disability all her life. The grandparents, too, were concerned but the whole family accepted and loved Jo and gave us their support.

Barry summed up our feelings in the birth announcement we sent out. It said, "Although we wouldn't wish Jo to have Down's Syndrome, we are sure she will bring her own particular blessing to our family."

The gifts and cards flowed in. Some wrote special messages of encouragement, others just chose to treat her as a "normal" arrival. We decided early on not to worry about other people's reactions and just accept whatever they said. We knew ourselves how difficult it was to know the right thing to say. One of my precious memories is of the headmaster of our local primary telling us that he would look forward to welcoming her into his school, just like he had our other three children. He will be doing just that next September!

A very caring consultant at the hospital gave up his free time to come and chat to us. His advice was, "Take her home, love her, enjoy her and nurture her just as you have your other children." Although I felt I wanted to find out as much as I could about the Syndrome, he was certainly right – first and foremost Jo is a child, with the same needs as all other children.

When Jo was ten months old, I found Ruth, a wonderful childminder, which allowed me to do some supply teaching again. Ruth has been an example of God's provision for Jo and last year she became Jo's Learning Support Assistant at play school.

 

What impact has it had on you as a family?

Jo is now nearly 4 She has changed our lives completely. Which changes are the result of Jo's disability and which would be the same for any family with older children having a new baby, it's difficult to tell. We've certainly learnt a lot, as we faced new situations and developed new skills.

We have all made sacrifices. The other children have missed out on some things because Jo's needs have come first. They have done their fair share of "Jo-minding" too, especially as she has become more active and needs constant supervision.

My own "career" (if I had one!) has had to take a back seat once again too. Although I know some folk manage to work full time, we have had far too many appointments to let me teach on a regular basis. In some ways, though, that's a positive thing. If it wasn't for Jo I would probably be trying to fit far too much in!

The children have learnt to be more accepting of those with disabilities. My husband admits people with disabilities used to make him feel uncomfortable, but he too has found that feeling is gradually fading. Our youngest son hadn't relished the prospect of losing his position as baby of the family, but he quickly turned into a wonderful caring elder brother, who instinctively did what was right for Jo.

An unexpected side effect of having Jo is that I have found other people far more willing to share their own problems with me. I guess that's simply because they know we have problems too.

When I watch Jo climb on to her 94 year old Grandpa's knee and snuggle up to him whilst he reads to her, I know that all of us have received from Jo the best thing any of us can ever experience – unconditional love.

 

What would you want to say to someone in a similar situation?

It's difficult to generalise because every child with Down's syndrome is an individual and every family is unique. I can only say that whilst having a child with Downs Syndrome is different, it's not the end of the world. You do have to face some difficult challenges and there are low moments - but there are also many precious ones too. I have learnt so much through having Jo and have met some brilliant professionals and some amazing parents and children. We are all certainly richer and, I believe, wiser because of her.

What would you want other people to understand?

People find it difficult to know how to react sometimes. We have mainly only had positive reactions but other parents aren't always so lucky. I know some have hated overhearing remarks like, "What a pity!" or "Look at the poor little thing, isn't it sad!"

The hardest thing that I have had to deal with was when an expectant mother told me that she would have an abortion if the tests showed she was expecting a child with Down's syndrome. Whilst I was glad she felt able to be honest, it did make me feel she was devaluing Jo's life.

A lot of people tend to make some generalised comments about how people with Down's syndrome are always very happy – or loving – or musical. The truth is they are just as varied in character as the rest of the population! I usually try and gently explain that Jo has her grumpy days - just like her mum! – and that actually she is very like her elder sister: likes to wake up slowly, comes alive in the evenings, and loves pieces of paper, pens, books and music!

I fully accepted Jo and her condition when she was born but I'm beginning to realise there will probably be many moments through her life when I have to face up to and accept the differences that brings. Jo was born with very low muscle tone so she has reached all her physical milestones – sitting, standing, walking – very late. It is tough to see younger children literally running past her. I read an article recently by a mother who was just coming to terms with the fact that her twenty-something son will not be able to live an independent life and start his own family as all her friends' children are doing. I guess there will be many more "crunch" moments to come for us, too.

Thankfully, having experienced God's help in the difficulties so far, I can also give Him my concern about Jo's long-term future. I know that Jo is completely accepted, loved and valued by God just as she is – just as He accepts and loves me with my imperfect view of things. He has proved beyond a shadow of doubt that He understands and has provided for our every need.

 

Are there any resources you'd like to recommend?

We are very fortunate that the newsletters and publications produced to support people with Down's Syndrome in the UK are excellent.

The Down's Syndrome Association deals with everything to do with daily life, health, and benefits

The Down Syndrome Educational Trust concentrate on developing educational resources for use with children with Down's Syndrome.

The Makaton Vocabulary Development Project is another useful site. Makaton is the simplified sign language developed for people with learning difficulties, which we use with Jo as an aid to speech development.

Melody is an organisation which has just been set up to promote music-making for people with learning disabilities.

 

Article written by Jenny Robinson

Photograph at the top of the page reproduced from the DOWN'S SYNDROME ASSOCIATION Website (www.downs-syndrome.org.uk), with permission."