Parents
Nerisha Saman

Profession:
Unit HR Manager

Age of parents:
40

Child’s name:
Tanvir

Age: 10 years

Is this your only child?
Yes.

Diagnosis of child:
Tanvir was born in April 2005 in Cape Town. At the time I was married to his dad and we were both working parents. Tanvir was with a day mother while we were at work, she was actually our neighbour. On 20th September 2006, I received a call saying that Tanvir had an accident. I rushed to the Mediclinic in Parow, Cape Town to find Tanvir had fallen into the swimming pool at his day mother’s house and when he was eventually found, he was not breathing. He was resuscitated after a while at the clinic and sustained severe brain damage. We spent 2 weeks in ICU and 8 weeks in high care. When he was brought out of the coma, he was completely non responsive, lost his speech, all mobility, his swallowing reflex, he was spastic, etc. That was when we were introduced to the world of living with disability. He was diagnosed as an Cerebral Palsy Athetoid (A movement disorder where movement is involuntary and uncontrolled at times.)

What are the biggest challenges facing your child on a daily basis?
Tanvir is completely dependent on us for his nutrition, hygiene and mobility, he is cognitively advanced and very responsive. I think it is frustrating for him as he is limited by his physical condition, however Tanvir is generally a happy kid who will only complain if he is in pain or something is bugging him. He is actually quite an easy going kid.

What are the happiest moments you have with your child on a daily basis?
Oh definitely, his smile and laughter can light up anyone’s day, playing with him and hearing his contagious laugh is priceless! Our household is a happy one with plenty of music and story telling which Tanvir thoroughly enjoys. Weekends are family time ...baking for the sweet toothed young fellow, going to the park, etc.

Are you married?
Single parent in a committed relationship with an awesome man, Keith, who has been super with Tanvir! They have a lovely,unique relationship independent of me. Keith has quickly become a huge part of Tanvir’s life, he is involved in all Tanvir’s routine activities and rough play of course trumps everything else!

Has your special needs child had an effect on your marriage?
Perhaps it did, people deal with trauma differently, I believe in being the “author of your own destiny” I was fortunate to meet Keith who adores Tanvir and contributes positively to our environment and well being. I think Tanvir just enjoys having another guy around since he was stuck with two ladies (Maria & me) for a few years...

Are your family and friends supportive?
I’m blessed with an amazing family & partner. Tanvir has a full time care giver/best friend, Maria who is fantastic with him. Tanvir and I are very fortunate to have this much love & support. My parents have played a consistent, stable supportive role since Tanvir’s near drowning accident. They have been a pillar of strength to me. Tanvir is fortunate to fly to KZN with Maria twice a year during school holidays and enjoys being spoiled by his grandparents.

What has your child taught you about yourself, both positively and negatively?
Tanvir has humbled me in many ways, he has taught me that many things are possible with positive thinking and perseverance and that your current situation does not determine the rest of your life. I realise that I am very focused on him and what he needs - at times it can been seen as inconsiderate to anybody outside of our household.

Do you take time out, if so what do you do to relax?
Yes. Go to the movies, holidays, dinners, etc. with Keith, friends and family.

What has made the biggest difference to your child’s quality of life?
Maria and the “normal activities” that most ten year old’s experience, interaction with people who love him, all his therapists especially Gillian Shead (his physiotherapist).

Tanvir attends Wandsworth School for special needs children and enjoys interacting with the others kids. Since Tanvir is an only child, he gets the benefit of playtime with other kids his age.

What is your dream for your child?
To be as independent as possible.