Tomorrow March 21st marks World Down Syndrome Day. While most of us will be aware of the genetic condition, one mum working with the Down Syndrome Centre shares her experience of diagnosis.
Triona Cussen is mum to 3 year old Joshua. Joshua is the youngest of four boys and was born to Triona and Pat on 5th September 2011. It was soon after birth that Joshua was diagnosed with Down syndrome.
While Triona feels that they had a fairly positive experience she notes there is definite room for improvement. Here she reflects on her initial reactions, how she views them now and what she wishes she had been told at the time.
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Luckily for me and my husband we had a fairly positive experience. It was only three years ago so the details are still very clear in my mind. I remember with such clarity the labour room. Prior to giving birth, I remember the room to be big and bright, full of hope and laughter. Our midwife was lovely and I was happily chatting away and having a laugh with her, you can guess I had an epidural! This was a very happy room. Fast forward a few hours, and the same room was very suddenly very dark and dull, it felt like all the air had been sucked out of it.
I remember as soon as Joshua was born and was placed on me, I knew something wasn’t right. Yet I still clung on for hope. I warily asked my husband if everything was alright. I fully expected him to say – of course. When he said “I don’t know” that was the first time I felt my heart drop to my feet. He would never say that unless there was something wrong. When the midwives and doctor took Joshua over to the table a few feet away to examine him, I was afraid to look over. I remember having to really push myself to look, I knew that looking over there was going to change everything forever. I remember studying the faces of the doctors and nurses. Inwardly begging them to smile. A smile would mean they weren’t too concerned; a smile would mean everything.
After what felt like a very long time but I am sure it wasn’t they came over. They asked us did we notice anything different. They said there were a few features they saw in our baby that lead them to believe he might have Down syndrome. My husband remembers the doctors listing off all the possible health implications (all of which didn’t apply by the way) he bizarrely must have thought it was helpful to know at that time that adults with Down syndrome age quicker than typical adults. They left us alone in the labour room to be together and to make the first few difficult phone calls. Our paediatric consultant called by the next day to have a chat with us. As you can imagine, we were hanging on her every word. She spoke very professionally but very practically about Down syndrome. While a lot of what she said was good advice, one sentence broke my heart in pieces.
“Let’s face it, he will never go to college but maybe your other kids won’t either”.
I really felt that she was not honouring the little baby in my arms, what did she know of his future? How can you make that statement so factually when it is not a fact? He may very well be my only child that goes to college. Not 24 hours old and he is already been given limited short sighted predictions. Nobody can predict your child’s future. By doing so, you take away hope and hope is one of the most important emotions that you have to cling on to. All of this made a knot in my stomach, a knot of utter fear of the unknown. Fear is very powerful.
A message of support to parents
- Dream big. Today children with Down syndrome are healthier, more able and more integrated into the community than ever before. This is a new generation of kids with Down syndrome and they are knocking the socks off of everyone’s expectations. There has never been in the history of the world a better time for your child to be born with Down syndrome. Today people with Down syndrome go to college, have careers, drive, get married , are public speakers, become actors and actresses, play musical instruments, live independently, and live meaningful and productive lives. More and more children are fully integrated in our society, more children are successfully being educated in mainstream school than ever before.
- A diagnosis of Down syndrome does not define your child. Your little baby is still just a little baby. This baby is 50% you and 50% your partner. This baby doesn’t belong to an unknown and scary tribe of babies called “downs babies”. This is just your baby and it just happens to have Down syndrome. The rest is all uniquely your baby. Their personality, their likes and dislikes. All your own family traits – not traits of Down syndrome. Don’t buy into the old wives tales of “oh they are all so loving” “they all love music” etc etc. Your baby is your baby. The more you get to know your baby, the less important the Down syndrome will become. It really is just a part of your child. It is a learning delay full stop. Don’t over think it! Keep it simple in your head. Remember they will do all the same things that other babies do. They will eat, sleep and poo for the first few months. They will smile and laugh, rollover, crawl, walk – just in their own time. Enjoy it, it goes way to fast. As my speech and language therapist said to me on our first session together – the great news is that we are just dealing with a delay, not a disorder, but a delay. We can all handle a delay! It will all come, just be patient.
- You loved your baby before you knew it had Down syndrome. Nothing has changed, your baby always had Down syndrome and you will always love him/her.
- Your life has changed from what you expected…true. You will now meet people you would never have met before, you will learn new things that you wouldn’t have learned, you will appreciate things that would have gone unnoticed. You will have some tough times for sure, all parents do. You will however get some extra joys exclusive to people in your situation. Just because you had one road mapped out for your child doesn’t mean that you can’t add a few speed bumps, speed traps and road works along the way but the end destination will eventually be the same. It’s just a different journey than you planned but it’s what you make of it. It can be amazing, difficult, full of joy and happiness. Try to focus your energy on what you can do. Educate yourself, gather information, gather supportive people and services around you and try to steer away from worry. It is wasteful and helps nobody. You’re entitled to take some time to wrap your head around the situation. Learn what it means, but then I would advise you not to let the fears of the unknown take away from the joys of the present. My biggest regret was wasting time being sad in the beginning instead of just soaking up every minute with my beautiful little baby. Your beautiful baby will amaze you every day. Each little milestone will make you the proudest parent ever.
- Remember Down syndrome is nobody’s fault. Most women worry about their age and weather it was their fault. I can’t stress how important it is to get that worry and guilt out of your head before it festers into more than it should. Down syndrome can occur to a woman of any age group.
- Unless necessary now is not the time to find out all the possible health implications that can be associated with Down syndrome. A syndrome is basically just a list of possible symptoms, many will never apply to your child. There is no point in worrying about something that does not even apply. I urge you to not trawl through the internet without recommended up to date sites as old fashioned, out of date information only adds unnecessary stress.
- The early intervention that is available for our children is wonderful. Our children are given more support than ever before in the early years, allowing them to reach their full potential. This generation of kids will reach their full potential like never before. It is a very exciting time for them, it is full of hope and potential. Please feel encouraged by this.
- Don’t feel like you are putting added pressure on your other children because you have a child with special needs. Research shows that your other children will show more empathy and compassion in their lives having experienced firsthand the joys of living with their sibling with special needs. All the research shows that families are truly happy. They wouldn’t change their child for the world.
- When worrying about what intervention may be required try and remember that the only intervention your child needs for the first three months is your love, being present in the moment to really appreciate them, plenty of eye contact and a loving home. Don’t stress about how early you have to start the intervention, in the beginning, it’s all about bonding with your baby. The rest will happen in due course.
- Please use correct terminology when referring to our children. Never say a “Downs Baby” always use person first language. This is a baby with Down syndrome – not a Down syndrome baby. Please think about this, we are not being overly sensitive about this. Once you see the difference you will understand how hurtful it sounds when said incorrectly.
- When you meet a parent who has recently had a baby with Down syndrome make sure you say congratulations with a big sincere smile on your face. Keep as positive and upbeat as you can.
- Contact The Down Syndrome Centre. You will learn about your child’s ability and not disabilities at the centre and can be put in touch with other parents that are out there living happy, fulfilling lives. Know that there is a very active and supportive community of parents out there. You will meet great friends when you are ready to do so. There is absolutely no reason to ever feel alone.
