To celebrate World Down Syndrome Day we are talking to Sue about her son Aidan who has a Down Syndrome diagnosis, she tells us about diagnosis, their life and the importance of being Aidan.
Aidan was born in a hurry in
February 2009. Soon after the wonderfully quick and straightforward labour, the
midwife broached the issue of Aidan possibly having Down syndrome and I knew
from that moment that there was no question. It was unexpected news, but I
remember the sense of euphoria and joy continuing as we dressed and held our
new baby in the delivery suite. I have heard since from other parents of less positive
experiences of how the news is delivered – but that’s a whole other story.
I do remember feeling
compelled to tell everyone I met initially after returning home - “Hi, this is
my new baby – he has Down syndrome”, even before I said his name. I had to have
a word with myself and calm down, but it was just part of adjusting. I have grown
used to people staring - but appreciate warm smiles rather than sympathetic winces.
I think I’ve been quite patient with the – “my cousin-twice-removed has Down
syndrome and they have their own flat!” words of encouragement from
well-wishers. I know this comes from a good place in kind hearts, but it can be
a little trying at times.
I am fiercely proud of my gorgeous boy. While I try to dispel the myths and stereotypes associated with people who have Down syndrome, Aidan is resolutely cheerful and a cuddle monster. I’ve tried to explain that this does not help the cause… Being quite shy myself, I have also had to get used to him greeting everyone he passes with a loud ‘Hiya!’. One of his favourite activities is finding a bench occupied by older people (aka captive audience) and doing a little song and dance routine – usually very well received. Aidan shares his love and happiness without prejudice and reminds me how just acknowledging other people can make a little difference.
This isn’t to say that fear
and anxiety haven’t been part of our experience too, however. On returning home
from hospital I recall a wobbly time, when trying to project too far into the
future. The ‘what ifs’ can stack up and cast shadow over the here and now,
robbing you of your happiness. We decided early on to try not to look too far
ahead or try and predict Aidan’s future – just as we can’t with our other
children.
We have been extremely
fortunate to have received incredible support from a range of professionals and
a wonderful school. While I whole heartedly appreciate this input, I again find
anxiety sometimes creeping in when faced with a multitude of different plans –
Speech and Language Therapy, Occupational Therapy, Physiotherapy, school work
and more.
I encourage my children, but
don’t need to feel that I’m raising geniuses. I do my best and hope that that
is good enough to ensure my kids are happy, kind and confident. I would describe
my default maternal state as ‘quietly neurotic with feelings of inadequacy’ and
I have found these feelings amplified at times when it comes to parenting
Aidan. I feel pressure to be coaching, instructing, practising – and that any progress
(or lack of it) is my responsibility. It can feel overwhelming at times.
To counter this, I search
for times when we can just ‘be’ ourselves and not worry about all the rest. For
us, this can be snuggles in the morning or walks with friends on the beach or
in the woods. Times when we’re just us as we are right now. Being with people
who love you and make your heart warm really helps too – especially if they
come with gin.
Aidan often reminds me
himself about the need to just stop and take a breath. Everything will happen on his terms – no
faster, no slower – definitely an on-going theme in our relationship. Who knows
what anyone’s potential is – I’m not quite sure what mine is, to be honest, or
at 46 if I’ve reached it yet or not?!
There may be some different
issues to consider in raising a child who has Down syndrome, but nothing to be
afraid of. Our lives are far richer for our experiences. We have also met some
amazing friends as a result. We may be seen as a bit different, but don’t usually
feel it. We’re just us!
If you want more information about Down Syndrome, take a look at the Down Syndrome Association. Sue, Aidan and their family live in the North East and recommend the DSNE who cover Northumberland, Tyneside, Wearside, Durham and Teesside, they are a registered charity run entirely by volunteers.
Let us know about your experience of Down Syndrome, what are you doing to celebrate this awareness day?
