Parents
Wayne and Naomi Luyt

Profession:
Project manager/designer/draughtsman for a structural engineering firm 
Accountant for a film company

Age of parents:
46 and 44

Child’s name:
Liam

Age: 4 Years

Is this your only child?
Yes

Diagnosis of child:
Down Syndrome Trisomy 21

What are the biggest challenges facing your child on a daily basis?
Liam is non-verbal so we have to deduce what it is he wants or why he is upset. He gives us physical clues like opening the fridge door, which means he wants something to drink or he opens the grocery cupboard, which means he is hungry. He is not able to communicate when he needs to use the toilet so we have to guess that too. He is making good progress in this area but it is still a skill that he has not mastered yet. We need to dress and feed him. The biggest challenge is the impact his lack of speech has on his relationships with other children.

What are the happiest moments you have with your child on a daily basis
Liam has a lovely sense of humour and makes us laugh often. He loves hugging and he has the most beautiful smile. When we come home from work, he is there waiting to greet us! We also love shower time and our quiet time as a family before he goes to sleep.

Are you married?
Married.

Has your special needs child had an effect on your marriage?
We truly wanted a child and are so grateful to have Liam in our life. It has been very challenging to find our balance, a special needs child takes a lot of energy and we get very tired, at those times it can be an inner battle not to take our frustrations out on each other - we are still working on this. We have learned to communicate openly about our feelings and this has taken our marriage to a deeper level. Along with the exhaustion and feelings of disappointment and sadness that you have to work through as a couple, readjusting your expectations for your child can be a painful process. We had been married for 15 years by the time Liam was born and we were set in our ways as a couple, we had lots of growing and adjusting to do which has been both painful and positive. Another effect on our marriage was the financial implications of caring for a special needs child.

Are your family and friends supportive?
Our families are very supportive. Our parents spend time with Liam each week, they have gotten to know him well. We can have open conversations about him with them and we find their input invaluable. We have some good friends too, not all friends offer empathy for the challenges that one faces with a special needs child and so one loses some friends along the way but the ones who stick with you are the diamonds that you would have wanted in the first place! The journey of a special parent can be lonely and one has to work hard to retain friendships and not let the special need become the whole focus of the family.

What has your child taught you about yourself, both positively and negatively?
Liam has taught us that you can endure challenging circumstances and still retain your sense of humour. We have faced a lot more than we ever thought we could. Every little step of progress he makes is a great joy for us and we are grateful for it. He has taught us to take one day at a time and to enjoy the simple things. We have met some amazing people on this journey with Liam and our lives are enriched because of them. We are also reminded of how small minded we were before Liam, he has opened a door to another world. Sometimes we think we will never teach Liam as much as he has taught us!

Your heart can break because this is not a path you would have chosen but a heart filled with love is self-replenishing and it can heal.

Do you take time out, if so what do you do to relax?
We love cycling as a family, we have a Weehoo bike trailer for Liam. We enjoy camping and being in the outdoors. We waited so long for Liam that we are not keen to leave him and go off on our own. If Wayne and I want an evening together we are happy to leave Liam with his grandparents.

What has made the biggest difference to your child’s quality of life?
Knowledge on his condition and all the therapists and medical professionals who we have consulted with along the way. The love we feel and shower on Liam.

What is your dream for your child?
We would love for Liam to read and write and have an occupation that will give him dignity and self respect.