Noel Ross and Ilse Kilian-Ross
Operations Director at Amazing K
Principle at Amazing K Autism School & Pre School in Johannesburg
Age of parents:
36 and 43
Age: 8 years
Is this your only child?
Diagnosis of child:
Madison was first diagnosed as PDD and then later as Classic. Today her diagnosis is definitely Classic Autism.
What are the biggest challenges facing your child on a daily basis?
Madison is 100% reliant on mom, dad and “ouma” for everything. Madison is not able to feed herself or dress herself. She is non-verbal and has never spoken so much as a single word. She did have a few words prior to age two but lost them after her 3rd operation. Madison was born with a clubfoot and her development was stunted since birth. Today she battles with all things “gross motor”, she is not able to write or hold a pen correctly and she shows very little interest in being in a classroom environment.
What are the happiest moments you have with your child on a daily basis?
Madison is “nature’s-child”. She loves being outside, she loves getting dirty and she absolutely loves water. Her most favourite activity is playtime with mommy or daddy and when we are on the ground or on the bed with her she will interact playfully and engage with us in the most loving manner. Madison does not like being on her own indoors. She would much rather be with mom, dad or “ouma” and she loves physical touch. Her laughter is priceless and the giggles can be brought on by a funny game we play or by something as random as a fan blowing dad’s hair in the car. I think my HAPPIEST times are bed time when my Madison cuddles mommy, when she holds me close and kisses me!
Are you married?
Has your special needs child had an effect on your marriage?
Yes and No. I think the only real effect on our marriage is the inability to do spontaneous things together as husband and wife. It is exhausting raising a child with Autism and the “spouse” is usually the person you take your frustration out on. In many ways Autism has brought my hubby and I closer to each other. We cherish our time together more and don’t take each other for granted in any way.
Are your family and friends supportive?
Our families have been very supportive but we have lost the majority of our friendships over the years. People do not understand Madison and I think that people would rather not be part of something they don’t understand. In the same breath I have to say that we have made new friends.Autism is was got us to start Amazing K Autism School & Pre School and we are now a part of a community of like-minded families that support each other. Beautiful friendships have formed and it might sound strange but the friendships between Autism families are so different to other friendships – it is like an unspoken bond.
What has your child taught you about yourself, both positively and negatively?
‘Less is more’ would be the biggest lesson I’ve learnt. I used to be the person that always bought new things, my home had to be filled with art, decor and a magnificent garden. Things had to be perfect in my house, that was until Madison was about 3 years old.
I soon realised then that ‘less is more’. It is easier to not have so many things, than to constantly scream at a child because she is playing with things she should not be playing with. Autism has taught me to love in a way I never thought possible. Autism has taught me to be stronger than I thought I could ever be. Autism has taught me to give without expecting something in return. But most off all raising a child with Autism has made me see how fickle people can be.
Do you take time out, if so what do you do to relax?
We try but it is not always easy to find somebody willing or able to look after our little princess.
What has made the biggest difference to your child’s quality of life?
I think we have made the biggest difference in Madison’s life – as her parents. Ouma has also been there for Madison since birth and is more like a second mother to Madison than a granny. We 100% accept Madison for who she is and we are not trying to change her. As a family we support her in every way we can and we are trying our best to help her to be the best she can be!
Another huge difference has come from starting Amazing K. Madison is now in an autism specific environment that understands her challenges. She has formed friendships (in her own way), she has learnt that the world is bigger than mom, dad and ouma and Madison has learnt to be OK with change. Amazing K has grown and we now have 23 children all of whom have Autism and for children with ASD to be around other children, families and teachers that fully understand their challenges and difficulties is worth more to the child than words can describe.
What is your dream for your child?
This is a really difficult one for me to answer... a mother and father want so many things for their child and we are no different BUT we are realistic and we understand that Madison will always be dependent on others for her day to day requirements. We understand that university, marriage and a family of her own is not on the cards BUT we can hope and work to give our daughter a “voice” – give her the ability to communicate her feelings and thoughts and we hope that she will one day be able to be slightly more independent ‘specially in respect of dressing, feeding and toileting.