Parent
Riedwaan and Samantha Isaacs
Profession:
Project Manager
Self Employed
Age of parents:
43 and 32
Child’s name:
Roshan
Age: 5 years
Is this your only child?
My husband has two older boys from a previous marriage and we also have a 10 year old daughter.
Diagnosis of child:
Roshan was born and diagnosed with Down Syndrome, shortly after this he received a second diagnoses - VSD (Vertricular Septal Defect). A hole in the lower two chambers of the heart. At 7-8 months when Roshan started solids, the doctor picked up Hirschsprungs Disease. A condition which impacts the large intestine and passing of stool. At 8 months of age Roshan needed an emergency colostomy and then at 10 months old a pull through surgery. Roshan was diagnosed with Autism at 4 years old.
What are the biggest challenges facing your child on a daily basis?
Lack of communication, Roshan is still non/verbal and it’s a big challenge to work out his level of intelliegence and what would be the appropriate schooling environment for him. Private schools are just too expensive for us and unaffordable for the average family like ours. There are only 6 designated government autistic schools within the Western Cape which makes it is so hard to get into these schools. Roshan has already been on the waiting list for 7 months but it can take upto 3-4 years to get a placement. Schooling is a major obstacle that many parent like myself face.
Due to his Hirschsprungs he is taking much longer to potty train and sometimes he regresses. Making the Dietary change of removing gluten and dairy from his diet has been difficult.
What are the happiest moments you have with your child on a daily basis?
The happiest moments are when Roshan achieves a new milestone. He has a smile that melts hearts, it makes all the hardship and battles worth it.
Are you married?
Married, but my husband works away in the week and is only home on weekends.
Has your special needs child had an effect on your marriage?
In a way yes. We work harder than ever to try and provide him with everything he needs. Marriage is a test of time, having a special needs child has not broken us apart, thankfully.
Are your family and friends supportive?
I don’t have close family and most people are busy with there own lives. Both of our families try support us in the ways that they can. I belong to two a few support groups via Facebook and whatsapp groups.
T21 - Down Syndrome Family Support
Roshans-life-with-Down-Syndrome
Daniel & Friends Fund Support Group
What has your child taught you about yourself, both positively and negatively?
Patience and a deep understanding of special needs kids.That I am strong and can overcome any obstacle no matter how hard it may seem. Roshan is my world (my light in those dark days) In RSA you have to learn to research (Google will be your best friend) and fight for your child, no one else will. A “thick skin” will help you to ignore the negative comments or the looks you get in public.
Do you take time out, if so what do you do to relax?
Balancing work , Roshan and my daughter by myself in the week doesn’t leave me much down time. Its doesn’t happen often but if I am able to attend a support group get together, otherwise I like to watch TV series’ late at night.
What has made the biggest difference to your child's quality of life?
The fact that I do a lot of research and have two fantastic support groups with some awesome ladies. Also that my son has the most amazing paediatrician Dr Hanneke Heyns who always steers us in the right direction medically and is so encouraging. Other than that, its mostly the daily fight with government, schooling or the medical aid - I don’t give up easily.
What is your dream for your child?
That my son will be able to read and write and function with his autism to the extent that he wont be entirely reliant on us or his sister for the rest of his life. That he can achieve his own goals and be like anyone else, a productive member of sociality that will show others it can be done.
