"I Could Never Cope With One Of Them!" The Experiences Of A Mum Who Has A Child With Down Sydrome

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An Honest Interview with Leonie

As it is Down Syndrome Awareness Week we thought we would interview Leonie our Director and Development Support Manager to ask what she would like people to know about Downs Syndrome and to ask about her experiences of being the parent of wonderful Harrison. Leonie shares a really honest and open account of everything from the diagnosis and her joy and pride alongside the inevitable frustrating comments of others to how she has changed as a person.  

What key things would you like people to know about Down Syndrome?
It affects individuals in similar ways but does not mean that all people with Down syndrome are the same. There are common health problems and learning difficulties but each person is affected differently. These days people with Down syndrome grow up to lead fulfilled semi-independent lives. With lots of support from as early as possible a child with Down Syndrome can achieve things you might never expect. 

Do people with Down Syndrome share particular qualities?
Lots of people have preconceived ideas about certain personality traits of people with Down Syndrome; stubbornness, happy, cuddly, funny to name a few.  Each person with Down Syndrome is as unique as you or I. Personality and appearance is mainly what we inherit from our parents. Having one extra chromosome does ‘muddle things up’ a lot, but the other 46 are from our parents so it’s inevitable a child with Down Syndrome will be as similar to other family members as the rest of us.

Tell us about a couple of the challenge you face day to day
Trying to understand what he is wanting to communicate to us can be challenging for both him and us as parents. His speech is improving with therapy, and he use Makaton but has a lot to say and speaks fast! Sometimes it’s like playing a game of charades! His behaviour and developmental stages can really differ from hour to hour, so I describe it as like having a son between the ages of 2 years and 9 years which can change by the minute!  His lack of awareness of danger is difficult as he wants to be independent but needs to be kept safe.
Also he can get very fatigued if he’s too physical or has sensory overload.  We try to prevent these issues by using different strategies but it doesn’t always go to plan.

The most unhelpful comment you have received about your child to date?
I could never cope if I had one of them’  
‘He’s no different to my ‘normal’ child’
‘But I bet he’s happy all the time’

Has being a mum to a child with Down Syndrome changed you as a person?
Definitely 100%. I used to want to be in control of everything, being a perfectionist and always organised. After having my son diagnosed at birth my world felt like it spun out of control. I had to learn to cope with an unknown journey, fear for the future, panic at how I can help him. It’s actually been a blessing because although I fight tooth and nail for my son, I now cope with other things in life as they happen. I am now able to ‘live day by day’ in the moment without having to plan and control everything. This is a much more balanced place to be in. Don’t get me wrong, it’s not been easy, I have really struggled (especially during the first few years). However, I have found my way through and now wouldn’t want to change things at all. In fact I am actually fearful of ‘normal’ as I don’t know what this is anymore! 

The Diagnosis –how was it for you?
A shock is an understatement! All my antenatal checks came back within normal range. As soon as my son was born and the midwife put him into my arms I immediately knew! Luckily the hospital staff were amazingly positive and supportive. They were sensitive, kind, caring, reassuring, and above all coped well with the way I reacted! I felt like I had been hit by a lorry! Physical and emotional pain! Powerful emotions being thrown at me from all angles. The feeling of grief including hurt, anger and fear were overwhelming. I was actually hysterical.  Very soon numbness took over and it was like an out of body experience. I look back now and wonder why I reacted so strongly. I feel guilty for feeling this way. But I have to remind myself I am human and we all react to shock in different ways. 

What is the most helpful support or advice you have received?
One of the midwives said to me ‘one thing is for sure, your son will never disappoint you. He will only ever surprise you with all that he will achieve’. I reflect on this regularly and wonder if she had a child with disabilities. I am so grateful for that comment which will always stay with me and give me strength during the hard times. And it is so true! Even the small achievements become a big celebration!

Meeting up with a mum who had a 4 year old daughter when Harrison was a few months old was so comforting. Seeing a little girl who had started mainstream school, could count and recognise her colours gave me hope for the future. The advice and support I had was perfect for me as it was looking into the next few years ahead without going too far! I had someone who I could talk and be honest and open with who really understood. 

Finding out about SGPC and becoming involved in their community for parent carers also put some control back into my life as I could have support of others who understood and could navigate me on my journey along with empowering me with information.

Do you have any top tips for parenting a child with Down Syndrome?
Patience, repetition, praise, ability to laugh yourself through the challenging times and above all believing that your child can achieve lots and most importantly have high expectations! 

Celebrating the beauty – final words- tell us what you love about your son
His determination and ability to achieve things. His fantastic sense of humour and the way he perceives life. His ability to empathise with others. 

We couldn’t be prouder of our son and celebrate his uniqueness and progress every single day!