Parents
Alec and Lauren Schoeman

Profession:
Head of Equitues at a bank.
Down Syndrome & Special Needs Counsellor
www.specialneedscounselling.co.za

Age of parents:
38 and 36

Child’s name:
Nicholas

Age: 3 years

Is this your only child?
No, two older sons - Adam 7 and Ryan 5

Diagnosis of child:
Down syndrome (Trisomy 21 – an extra chromosome 21 in every cell)

What are the biggest challenges facing your child on a daily basis?
Nicholas recently turned three and for the most part, he is like any other toddler. Our biggest daily challenge though, is with food. Nicholas doesn’t like to chew. He has the teeth and will bite initially, but once the food is in his mouth, he just swallows. This is obviously a choking hazard and so we are very aware of what he eats. I’ve even had to ask family and friends to not feed him anything without my knowledge. This is not because I want to deprive him of popcorn and sweets at birthday parties – I’m just trying to keep him safe. So mealtimes at the moment consist of quite soft, pureed food but we are working on it.What are the happiest moments you have with your child on a daily basis?
Nicholas is such an affectionate child and my day is just filled with hugs and tickles. He also loves music, so we often sing along together in the car or dance around the room. Nicholas is just adored by his big brothers and the feeling is mutual. To watch the three of them playing together fills me with such happiness.

Are you married?
Married

Has your special needs child had an effect on your marriage?
Any child will have an affect on a marriage, special needs or not. Nicholas was a birth diagnosis and a complete shock to us. We experienced a range of emotions such as grief, anger and fear. Acceptance of the diagnosis of Down syndrome really was a process, but our love for him never wavered. Alec and I made sure that from the beginning, we were honest with each other, regardless of whether our feelings were positive or negative. We leaned on each other for support and strength as we tackled our emotions. I have to say that after ten years of marriage, our commitment to each other and to our family is stronger than ever.

Are your family and friends supportive?
We are so fortunate to have had such supportive family and friends from day one. They all just love Nicholas (it’s really hard not to!). My in-laws have always been amazing with him and our other two boys. They have a very close bond. In the holidays, the boys will often go stay with them in Potchefstroom and it gives Alec and I some quality time together.

When we went through our toughest times, meals were brought to the house every evening and offers to help with the older two poured in. Although most didn’t quite understand what we were going through, they were there for us and that’s all that really mattered. We are so thankful for having such special people in our lives and for being a part of Nicholas’s big ‘family’.

What has your child taught you about yourself, both positively and negatively?
I am a control freak and a perfectionist who likes to plan everything obsessively. No one is ever going to accuse me of being spontaneous! But Nicholas has taught me that not everything is in my control, regardless of how much you plan or will it to happen. Do I still worry? Of course – I’m the mom of three very busy boys. However, now I tend to worry about the little things that I can influence and let go of the big things I can’t. It’s not easy, but day by day I have stopped focusing on planning the future and have started living in the moment, enjoying the present.

After Nicholas was born, I found that talking to moms who had children with Down syndrome, really helped. I’ve made some good friends along the way. I like talking about Nicholas (I’m so proud of him and all that he’s achieved) and I felt the need to raise awareness for Down syndrome and celebrate these beautiful children. So I started writing to magazines and had an overwhelmingly positive response.

So many parents are stumbling along the same path that we did and I wanted to help where I can. It’s such a scary time and to have support from people who understand, makes such a difference. It certainly did for me. I completed a counselling diploma at the end of 2014 and now offer Down syndrome and special needs counselling to parents (www.specialneedscounselling.co.za). I wouldn’t have known it three years ago, but Nicholas definitely is one of the best things to ever happen to me, and to us as a family.

Do you take time out, if so what do you do to relax?
Nicholas is an early bird and sometimes the day will start as early as 04h00. I am certainly not a morning person and I really do love my sleep. When I can, I like to sneak in a afternoon nap on the weekends or find that patch of sun to read my book. I have a very sweet tooth, so I love to bake (no complaints from the boys on this!). We also like to go away as a family, be it to the bush, mountains or the sea. The boys travel well and love the sense of adventure.

What has made the biggest difference to your child’s quality of life?
As is the case of about 60% of babies with Down syndrome, Nicholas was born with a heart defect. At four months of age, he had open-heart surgery to close the two holes in his heart. He had an amazing team of dedicated doctors and nurses at Sunninghill Hospital attending to him and the surgery was a success. Nicholas is now a healthy and active little boy and we only need to see the cardiologist for annual check-ups.

What is your dream for your child?
All we want for Nicholas, is to be happy, healthy and to know how much he is loved. We hope that he’ll be given every opportunity to pursue his own dreams, without any limitations placed on him, purely due to his extra chromosome.