Durban - Sarah says: Gerald and I exchanged marriage vows 25 years ago in the presence of God, our families and friends,” says Sarah. We promised to love, trust and honour each other, no matter what challenges or hardships were in store.
When we think about those promises today, we realise the huge expectation that we had placed on ourselves, the magnitude of those promises: richness, poverty, good times, bad times, sickness and health – and to raise children in a loving and nurturing environment. It was probably the “raising children” part that was to be our greatest challenge and greatest blessing. Raising Gerard, 22, and Michael, 19, has been our greatest reward – nothing has given us greater joy.
Gerald: Sarah and I met in 1985 on a protest march to the offices of the House of Representatives in Durban. A naturally beautiful young lady wearing a John Dunn T-shirt. I asked her about her great-grandfather, his 49 wives and the Dunn clan.
Our paths crossed once again in 1986 when we joined our college drama group. That was the beginning of our romance. We were married in 1988. Little did we know what challenges lay ahead. The responsibility of being parents to and raising two boys, a journey that has tested the bonds of marriage and partnership to the utmost.
Sarah: Shortly after our marriage, I miscarried our first child. We were devastated and each grieved in our own way for the loss. Four years later, I fell pregnant with Gerard David. I told myself that this time, I would do everything right. I read up on pregnancy, went to Lamaze classes and we prepared ourselves as best as we could for our new baby. Gerard was born on August 27. We had prayed so hard for a safe pregnancy and delivery.
Gerard, a happy, easy-going child, had a trouble-free first year. Our son was almost too good to be true. His first birthday came and went. His developmental milestones, including speech were reached within the normal time frames. He could say mummy, daddy, respond to his name, sing Happy Birthday and Twinkle, Twinkle, Little Star. I have to pinch myself when I relate this part of my story. Today it seems unreal.
At around 18 months, something changed. We knew deep down that something was not right – we just couldn’t quite put our fingers on it. From the loving, bubbly little boy, Gerard became more and more detached.
He started to slip into a silent world. He stopped responding to his name and at times did not seem to be aware of people around him.
He appeared to be deaf. He preferred to play alone, lying in the warm sun, breaking up sticks he had found outside, and lining them up. He was also fascinated with spinning objects and rejected his normal toddler toys for anything that could spin.
He became disinterested in the world around him and engaged in fixative and repetitive play, one obsession taking over from the next, almost like a relay – from breaking up sticks and lining them up with precision, to spinning objects, to rocking.
From GP to GP we trotted, from paediatrician to specialist paediatricians and specialist paediatric neurologists, psychiatrists and psychologists. No one could help us. After endless tests and consultations, a heartless psychologist gave us the diagnosis that changed our lives forever: autism.
Nothing prepared us for what followed the diagnosis: “Institutionalise your child, forget about him and carry on with your lives.”
As Gerald and I drove home, not a word was spoken. Each of us wept silently. As we watched our son Gerard in the rear-view mirror we knew that there was no way we could ever send our baby away. That silent journey strengthened our resolve to soldier on doing the best we could for our son.
Silence has featured a lot in our relationship. Many times in our own silent spaces we find tremendous strength to meet our challenges. We have found great strength in prayer and silence in the presence of God.
Gerald: By this time our son Michael had made his entry into our world. At two, he wasn’t walking, he was sickly and weak, and was displaying some of the symptoms that Gerard had. He had no speech. I felt as if my heart had been ripped out. “Oh please God,” we cried, “not Michael too!”
Our worst fears were realised. We knew in our hearts that he was autistic too. A programme based on the philosophy of Ivor Lovaas, called Applied Behavioural Analysis, which aired on Carte Blanche, gave us hope. Sarah and I were drawn closer at this time as we put Michael through his paces during his therapy. We worked in shifts along with three therapists.
The financial strain was tremendous. We held fund-raisers and were supported by our friends, families and the community. Within a few weeks of the therapy, Michael had made progress and this spurred us on to continue as long as we could.
Sarah: While Michael was flourishing our spirits were draining as we battled for school placement for Gerard.
Then in walked the first angel, Lungile Dlamini. Patient, kind, considerate, she was a gift from God. She taught Gerald and me the true meaning of unconditional love. Not only was she our sons Gerard and Michael’s lifeline to our world, she was ours as well. Because of Lungi, my husband Gerald and I could have time to nurture our own relationship.
Gerald: Lungi’s death was the darkest day of our lives. But God sent another angel in our current helper, Mavis Nxele. A gentle soul who never raises her voice and simply loves our sons as her own. She is there when Sarah and I need to take a break from the stresses of our reality. A weekend away, a night out dancing, a movie.
I believe that the individual must not be lost in the challenges of raising a child with autism. You cannot allow the disorder and your child’s condition to consume you.
You must allow your partner to follow his or her interest or passion in order to “escape” from the very busy programme of life. Sarah’s passion is running – she’s run eight Comrades Marathons.
I support her by looking after the boys when she’s out on a run or by cooking lunch on a Sunday when she does a race and seconding her during the Comrades Marathon.
My passion is rugby. I am involved in KZN High Schools rugby as an executive member and selector. I go away on a tournament once a year.
Sarah supports me by looking after the boys when I’m away. This affords me the down-time I need to recharge my batteries. She also has to endure the odd jaunt to the pub with the boys and the annual fishing trips.
Sarah: They understand what we say to them and Michael can express himself to a degree. They have fears, behaviours and obsessions that people do not understand. Through training them in how we expect them to behave, we can take them out.
Our boys are happiest when we are happiest so between us, we have come up with ways to keep our family happy and ourselves sane. We have found that laughter has been the best medicine.
We have managed to find the humour in our everyday living with our boys. We laugh at Gerard running around the house at haircut time or when he knows he’s done something wrong.
We are able to laugh at ourselves, too. The lighter moments of autism bring us joy and laughter.
But it’s not always easy to deal with the reality of our situation and sometimes the wheels come off. Somehow we always manage to find our way back to each other, sometimes on our own and sometimes with outside help.
We are never afraid to seek help. We have found marriage courses and Retrouvaille run by churches helpful. We have learnt how to truly listen to each other and share our innermost thoughts. A marriage course introduced us to “date night” and once a week, we set time aside for ourselves just to connect.
Gerald: Where are we currently? I hear Sarah’s alarm go at 4am as she goes for her morning run. She will often bump into Gerard in the passage at that early hour. He goes through phases of waking very early in the morning and watching TV.
My weekday routine begins at 5.15am with showering the boys and getting them ready for school. Sarah makes the lunches and packs their bags.
We look forward to the weekend when we can unwind. We close off our weekend with Sunday evening mass where we sing in the folk choir with the boys. We thank God for bringing us this far as a family and take each day as it comes. - Daily News
l This is an edited version of a talk given by Sarah and Gerald Pyoos to the Action in Autism group in Durban.
Autism facts
l It occurs in the first three years of life.
l Children with autism show impairment in social interaction, verbal and non-verbal communication, and limited and restricted interests and behaviour.
l It is a neuro-development disorder, not caused by bad parenting.
l The cause, treatment, intervention and prognosis is uncertain.
l International statistics indicate that 1 in a 110 children have autism.
l Boys are four times more likely to be affected than girls.
l In most cases children require 24-hour care.
l Many parents are unable to take their children into public spaces because of their behaviour.
Warning signs
The child:
l Has no single words by 16 months.
l Does not respond when his/her name is called.
l Does not babble or point by his/her first birthday.
l Does not put two words together by age 2.
l Avoids eye contact.
Visit www.actioninautism.org.za