Age of parents:
Age: 8 years
Is this your only child?
Diagnosis of child:
Autism spectrum disorder with moderate impairments in social communication and speech.
Severe impairments in restrictive and repetitive behaviours.
Adhd/add - combined and severe.
Moderate intellectual disability.
Diurnal & nocturnal enuresis.
Foetal Valproate Syndrome.
What are the biggest challenges facing your child on a daily basis?
For Calvin to fit in with our family’s daily schedule, he is unable to wait for things to happen, he also doesn’t transition well. For example, we usually go straight home after school, but on the odd day we may have to run an errand and pick up a quick carton of milk from Checkers on the way. This change in routine is a major stress for Calvin which then sets us up for a new routine. Tomorrow he will expect us to stop for milk at Checkers after school and will have a complete meltdown if we don’t. It’s a struggle for us to negotiate and explain things to him.
What are the happiest moments you have with your child on a daily basis?
Singing along to CD’s in the car, especially heavy rock music - he loves it. When he is at the dinner table enjoying the supper I’ve cooked - especially if it is one of his favourite meals like Spaghetti Bolognaise or braaivleis and pap (Calvin has a very healthy appetite). Early in the morning when he automatically finds his way to my side of the bed (in the pitch dark) and lies with me until the new day starts.
Are you married?
Has your special needs child had an effect on your marriage?
We have been married for 12 years - Calvin’s disability has been extremely tough on our marriage and on both of us individually. We miss having the time to talk without being interrupted, time to visit friends or go eat out at a restaurant.
At first my husband thought I was being paranoid about Calvin, that Calvin would ‘grow out of it’ that he was just a little behind, but my mother’s instinct kept pushing me to find out what was wrong. Now Calvin has a diagnosis (he was diagnosed in August last year) we are in a better space, we have a better idea of how to interact with him.
From my side I still feel guilty and responsible for Calvin’s condition - I fell pregnant unexpectedly, without being aware that Calvin was exposed to Valproate Acid in utero, a medication prescribed for epilepsy and mood disorders. I blame myself for accidently hurting Calvin in this way but I am also working hard on reducing the guilt and trying to not let it come between my husband and I. It is hard, very hard.
Are your family and friends supportive?
Some of my family and friends are supportive, the other’s...Well let’s just say we let go of the people who couldn’t bring support and understanding to our lives.
What has your child taught you about yourself, both positively and negatively?
Patience, patience, patience!! Not to be so critical of Calvin’s or other people’s mistakes.
To have a fantastic sense of humour.
To ask for help - last December Kerry Hackeson opened the doors of Oak Haven, what a change it has made to our existence, just to know that if you can’t anymore, or if you are needing a weekend away, you now have the option of excellent special needs child care in Johannesburg. She saved my bacon.
Mostly Calvin has taught us to laugh, cry and to live!
Do you take time out, if so what do you do to relax?
I find myself just ‘staring into space’ when I get a gap to relax. Once I get used to the idea of having a little time to myself I would like to start painting or ceramics. I also like to garden. We also have our 20 month old little girl and she brings much balance and joy to all our lives.
What has made the biggest difference to your child’s quality of life?
Six months ago we found an excellent urologist who has made a major difference in treating Calvin’s incontinence, before he would wet himself almost every 10 minutes. We also have a great ophthalmologist who prescribed the right spectacles to reduce Calvin’s squint, it has made a marked improvement.
We were sent from pillar to post looking for a school for Calvin, most schools that we tried asked us politely and not so politely to leave. We eventually came across Casa Do Sol in Linden Johannesburg, Calvin now goes to a school where he is surrounded by other children he can play with and where he can be accepted, loved and stimulated.
What is your dream for your child?
I dream for him to be taken care of when I am no longer around or no longer physically able to care for him. I have found this in Oak Haven, I know they will be there for him, when I no longer can be.
At times I have failed miserably as a parent to Calvin. I have lost my temper, shouted, shown little patience or compassion. I hope Calvin knows how much I love him and how committed we are to him.