Nix and I met through a support group in our area. We also share a pretty special mutual friend.
Nix has been my “go to girl” for absolutely any question with regards to Down Syndrome. She is our google.
She is well read, well educated and is the fundi when it comes to Makaton sign language. She is fiercely loyal, fiercely determined and fiercely loving of her two precious boys.
She also happens to be the most phenomenal mother to her two sons.
Nix’s account of her journey is honest, frank and heartwarming, and her son Zac is one of the most handsome young men I have ever seen.
Zac is dressed by Tiny Tribe
All images are Derryn Schmidt
Who makes up your family?
Our family consists of Zac who is 5, our elder son Quinn who is nearly 8 and my husband Christian and I. We moved to South Africa when Quinn was only 12 weeks old so although our parents visit every year, we are essentially here without any wider family support as they all live in UK.
Tell us about your diagnosis journey – how, when, where?
We found out Zac had down syndrome about an hour after he was born. The Paediatrician came to my room and asked if we had had any pre natal tests and I started answering her before I clicked where she was going with the questions. We went into complete shock as the delivery of this message was very cold – in fact we never saw that Paediatrician again. One of her colleagues came the next morning to agree with her assumption and his bedside manner was even worse terming the condition T21 and then passing me a box of tissues and leaving. A psychologist was assigned to help me and I will always be grateful to him for introducing us to Dr Roos an amazing Paediatrician in Durban who was incredibly gentle with us and gave us hope for our future. The original Paediatrician said we would need to wait 3 weeks for blood results to confirm the DS but Dr Roos was able to get them in a couple of days and then help us to deal with this diagnosis.
Which moments do you find tough?
I find a few things tough – the constant watching of Zac when all my friends with kids his age can sit down and chat to each other at social events but I am the only one standing next to my child making sure he doesn’t hurt himself or someone else. He is a very loving child but has an equally wicked streak and will think nothing of throwing your phone or even a dog over the balcony to get your attention. In social situations, it is also hard to see Zac try so hard to keep up with the other kids in a group playing but they keep running away from him or not attempting to include him.
I also find it hard when someone asks if he has down syndrome as it highlights to me that although I only see Zac when I look at him, other people can clearly see his condition.
Zac tries very hard to communicate and when you cant understand his chattering and simply have to say yes, it doesn’t feel great. At the age of 5, I would like to be asking my son about his day or asking what has upset him but he still cant reply satisfactorily which can be tough.
Which moments do you find euphoric?
When Zac achieves something we have been working on for a while, it is a pretty euphoric moment. I’m a pretty hard task master on both of us, so I like the big things like being able to swim his first width of the pool but just lately it’s the new words that are coming out unprompted that make me so proud of him – seeing the joy in his face too as we finally understand what he has been trying to say is a special moment.
Also seeing the relationship between Zac and his brother is pretty special – catching sight of the unscripted moments when they have their arms round each other watching TV or Zac’s face light up when Quinn is there to collect him from school – these things make my heart happy.
Zac has a couple of special ‘girl’ friends his age who go out of their way to look after him and be a real friend to him and seeing the happiness he takes from this gives me hope for his future in this world.
Seeing the pleasure Zac takes in the little things like a piece of cake or a joke is a good reminder to me to stop and enjoy the moment – he gives the hugest smiles all the way to his eyes that can light up a room.
What would you like to tell your pre mom of a child born with Down Syndrome self?
It will be ok – it might not be what you planned but this has happened for a reason to teach you something and that reason will become clear in time. Life will still carry on – you will still go on holiday and do all the same things other families do and this little person will bring more joy than you imagine to your life. It won’t be exactly the life you imagined as the poem says but it will become just as good, just different. I’d like to say don’t waste your first weeks with your child in a dark hole of despair and fear but on reflection, much as I regret this, I think you have to go there to mourn the loss of the life you planned so you can come out the other side ready to tackle your new life and love your child completely.
What would you like the world to know/understand about your child?
As a parent, I’d like people who don’t know Zac to understand that whilst he may have DS, that is only part of him. First and foremost he is a little boy like any other with feelings and desires. It may take him longer to achieve goals that come easily to your child but he will get there and at the end of the day he just wants to play, make friends and have fun. If you can encourage your child to be a true friend to mine then I think the rewards for both children are immense. People first language is really important to families with children with DS. This means using words like retard, downie or even down’s kid are disrespectful. It puts the child in a box and suggests that’s all they are. In the same way you wouldn’t say a Cancer kid or an Aid’s kid, If you can say ‘a child with down syndrome’ rather than ‘a down’s kid’ it shows more respect and means a lot to the family.
What advice would you give to a family who has just received a diagnosis?
I think a lot of fear comes from ignorance so I would say to a new family to research the condition and you will see its not as bleak as your fear. Join facebook groups with other families with DS and there are some great blogs / pages written by parents that are very encouraging and informative about daily life. Find yourself another family with a child with DS and you will instantly feel understood and supported – we made friends with another family with a child the same age and this has been a huge source of comfort and shared experience. Invest time and energy into helping your child – early intervention and a great team of therapists is essential and finally try not to compare your child to any other – they will achieve their milestones but it will just be slower.
If you could change one thing in the world to ensure an easier life for your child what would it be?
Ooh this is a hard one and it probably depends on where you are in your child’s life at the moment. I’d love people to be more understanding and tolerant of special needs. It would be amazing if there were children with special needs routinely in mainstream classes so as children grew up their empathy and understanding was so much greater, that including people with special needs just became ‘normal’ . I remember as a child we didn’t even have a person of a different race in our class, let alone someone with special needs. As a consequence, I felt awkward around people different to me and didn’t know how to treat them. Now I have my own child, I understand why people don’t know how to treat him, but I wish it wasn’t that way.