Hearing of a medical condition or disability is usually a great shock, and goes against what we were expecting.
I often laugh at my pre-Mummy naivety, a time when I thought a shelf full of maternity books and expensive pregnancy vitamins would ensure a healthy, typically developing child.
A time when I didn’t have the sense to wait and see what our babies’ talents, tastes and needs would be, instead I tried to imagine their lives mapped out ahead of them even before they’d taken their first breath.
I suppose we all do it; ponder which school and clubs they’ll attend, even think ahead to fantasy weddings.
We imagine they’ll take after one or other parent, and only the wise simply wait to meet that new person and love them for exactly who they are.
I wasn’t one of the wise, and when Down’s syndrome was identified a few hours after Natty was born, I went into deep physical shock, imagined our lives were over and questioned whether I even had the skills to be her Mum.
As the months passed and she melted our hearts, I think a kind of denial took over.
I became obsessed with researching therapies, early intervention and support, maybe in the hope of making the extra chromosome fade, or perhaps trying to see into our futures.
It was when Natty was about three years old that I realised she was turning into a ‘project’, the target of way too many SALT and physio activities.
And although I wish I could turn back the clock and see her simply as our beautiful daughter rather than her condition in those days, I am grateful that I took that moment in time to give myself a good talking-to.
I had to love Natty unconditionally and get to know every aspect of her, and Trisomy 21 was just one.
I had to realise that although learning to be as independent as possible was a priority, success at school was never going to be her be all and end all. It was more important that she felt fulfilled and secure, enjoyed the company of friends, made choices about what food and music she liked.
Together we have all learnt to appreciate each girl for their uniqueness.
Ways to let you child know they are valued
- Have fun together as a family, sing, get messy and be silly. It shouldn’t all be serious, despite inevitable worries and times of stress.
- Teach your child life skills as early as you can. Having even simple household chores such as sorting laundry or feeding a pet makes them feel useful and valued and helps towards their future independence.
- Show your child that they are loved exactly as they are and tell them often. Write a little note or draw them a picture.
- Set achievable realistic goals that will encourage them to develop, and boost their self-esteem.
- Celebrate successes, however small, and praise your child for each new step. Tell everyone how proud of them you are.
- Finding an online forum or another parent who has a child with a similar condition makes you realise that you are not alone, and you can swap useful tips.
- Try not to let your child hear you being negative about service providers, medical teams or financial worries. By saving such niggles for when your child is asleep or an online chat you will prevent them from feeling like an inconvenience or worse still, a burden.
- Learn what your child’s individual differences are. How do they learn best, what triggers their anxieties and what kind of rewards do they enjoy most? Once you understand what makes them tick you can make minor adjustments to the way you do things in order to work with them.
- Try not to wrap your child in cotton wool. It’s easier said than done, and as a natural worrier I have to work hard at letting Natty take small calculated risks, but it’s the only way to learn about the world and feel included.
I will never be able to eliminate all the struggles we face for Natty throughout her life, but coming to terms with a chromosome is no longer one of them.
In fact she absolutely wouldn’t be ‘our Natty’ without it.