Guest interview: Meryl Odendaal
Meryl is one of those ladies who is always calm and composed and her quiet friendliness puts others at ease. What I have appreciated in getting to know Meryl, is her ability to make others feel welcome and to encourage them. She is also open and honest about her struggles as a mom who has had to navigate the challenges and balance in parenting a son with special needs as well as a daughter.
Briefly give a little context to your family.
Kevin and I have been married for 25 years. We have 2 children – Luke, aged 21 and Debbie, aged 17. Kevin grew up in KZN and I grew up in Zimbabwe.
We have lived in Jo’burg for the past 23 years. We were both brought up in Christian homes. I was saved as a teenager and Kevin in his early twenties.
Please explain the circumstances surrounding Luke’s diagnosis.
Luke was born at 38 weeks – a relatively easy natural birth following a normal and easy pregnancy. At delivery, he failed to breathe spontaneously, but after a short period of assistance from medical staff, he started breathing on his own and there seemed to be no cause for concern. (We will never know if this period could have caused some of his disabilities.)
During his first year, he was a difficult baby. He cried a lot and we initially put this down to colic, but it didn’t improve. He was a bad sleeper, but again, this could be normal for some babies. However, his sleeping patterns did not improve and he only slept through the night at the age of 6.
He reached his sitting, crawling and walking milestones 3 months later than average. As a baby he thrived on breast milk and put on weight and grew normally.
At about 9 months he started babbling, as most babies do, but this never progressed much beyond ‘mamamama.’ This actually stopped, although he did continue making sounds – mainly loud shouting noises.
Throughout the first year of Luke's life I had a niggle that something was wrong.
He just wasn’t the same as other babies, but I could not put my finger on what was wrong. At his usual paediatric check-ups in his first year, the doctor never gave us any cause for concern, but I still had this low-grade anxiety that all was not well.
Just after his first birthday I woke up one morning and thought – ‘He’s deaf!’
I started thinking about the fact that he didn’t respond to his name or any other words. He did appear to respond to sounds, but on thinking about it, I realised he could probably always see the source of sound. Luke was still asleep at the time and Kevin was away on a business trip to Cape Town, so I got a pot and metal spoon and went to his cot and started banging the spoon on the pot, making a very loud noise.
He didn’t even move and I knew then that he was deaf.
It was a devastating discovery to make, especially on my own, but I was also grateful that God had shown me what was wrong. That discovery launched us into the world of ENTs and Audiologists and soon Luke was undergoing a whole lot of tests – the most definitive one being an automated brainstem response test (ABR) which measured his brain response to sounds transmitted into his ears through tiny earphones. The result of this test was profound hearing loss in both ears, meaning he could hear nothing.
Luke was immediately fitted with the strongest hearing aids available, which were huge on his tiny little ears and whistled with feedback every time they came loose, which was often. He adapted well to them and didn’t fuss about wearing them, but after 6 months it was apparent that they were not actually helping him at all with hearing as his hearing loss was just too profound. At this point we were put on the list as a possible cochlear implant candidate and began another round of doctor’s visits, tests and scans.
At just over 2 years of age, Luke underwent the cochlear implant operation on his left ear. It was a wonderful success and at ‘switch on day,’ a month after the operation, he burst into tears as he heard his first sound.
Luke’s hearing progressed slowly and like a tiny baby, he had to get used to different noises and learn to interpret them and then start to hear and understand words.
He started talking about a year after the operation and we were delighted, but it didn’t take long for us to realise that his speech was not developing normally. He copied words and sounds a lot but it took a long time for him to use words meaningfully and his speech development was very slow.
At that time we began noticing other abnormal patterns of behaviour such as a fascination with anything spinning and repetitive patterns of play, behaviour and speech. He did not interact much with other children and was extremely clingy to me.
It was very difficult for me to leave him with anyone else as he just cried and cried. At about the age of 2-3 years, one of his teachers mentioned that she thought Luke might be autistic. As time went on and we learnt more about autism, we realised that this diagnosis was likely.
An official autism diagnosis was only confirmed when we took him to Unica – a school for autistic children in Pretoria – for an assessment when Luke was about 10 years old, but it was not a surprise.
At the time, what were your personal and emotional reactions?
When I discovered Luke was deaf, I was very emotional and tearful. I felt great sadness for this little boy who could hear nothing and there was a sense of loss knowing that life for him, and us, would not be as we expected.
But I was also grateful to have discovered what was wrong with him.
It was an extremely busy time confirming the diagnosis, getting hearing aids fitted and then fairly soon starting the process to prepare him for a cochlear implant operation and I think this busyness helped me emotionally.
It is always easier to cope with a difficulty if there is something that you can do about it.
When autism was first mentioned as a possible further diagnosis, I was even more tearful and emotional.
It was difficult coming to terms with the fact that after all we had been through with his deafness, we now had to deal with something else and even with my limited knowledge, I realised that this diagnosis could not just be fixed.
Autism was going to impact his life and all our lives to a much greater extent than the deafness.
I remember crying for the rest of the day after this first mention of Autism. However, I have often looked back and thought that if I had known just how hard it was going to be I would have cried for a lot longer than a day. God is gracious in not letting us see into the future!
Practically, how did your Christian faith strengthen you at that time and going forward? How did it affect your view of God?
Knowing that God is sovereign and in control of all things, has given me much comfort - both at the time of his diagnosis and throughout our journey. I was sad and emotional but not devastated.
I knew that God was sovereign over Luke’s diagnosis and I have held on to Romans 8:28:
‘And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose.’
Looking back, however, I realise that my understanding of God’s sovereignty and my ability to trust Him completely has grown over the years, thanks to the good biblical teaching I have received and the wise counsel of other believers.
I am learning to trust Him day by day and not to be anxious for the future. He is faithful and has provided what we have needed, when we have needed it - not always in our timing or what we have desired, but I can look back and see His faithful hand in our lives.
This helps me to trust Him for the future. I do have days and times when I find it hard to trust Him completely, and I become anxious and am tempted to question His goodness. I know that I still have a long way to go in this area.
How has parenting a special needs child impacted home and family life?
Parenting Luke has impacted almost every aspect of our lives over the years.
His needs have changed as he has grown and we have had to learn to adapt as we’ve gone along. Growing up, Debbie has also had to adapt to Luke’s unique challenges in our family, and it has helped her mature into someone with much empathy and patience.
Luke was not a happy baby and cried a lot. He was very clingy to me, probably as a result of the insecurity of not being able to hear initially and then also because of his Autism which we did not understand well. There were few people who I felt could help me with him, so I had very little break from caring for him. I also had to spend a lot of time with him in therapies, particularly speech therapy and I spent a lot of time doing therapy with him at home.
Trying to balance my time as a mom after Debbie was born, was often challenging and exhausting.
Luke has had to attend Special Needs Schools and this has involved much research and visiting of schools to find the right places for him. There are not a lot of options. Settling him at new schools and in new situations has taken time and energy and often required much perseverance.
Over the years we have had to learn to understand his specific Autistic behaviours and recognise things that would be difficult for him.
We have had to learn to plan our lives around his routine and need for familiarity. Even simple events like visiting a shopping centre or having supper with friends has to be planned and thought out. We need to prepare him well for unusual events and this can involve using photos and even power point presentations to introduce him to what is going to happen.
At home we have had to learn to recognise events which could frustrate him and try to minimise these or calmly coach him through them. These could include faulty technology, slow internet, loss of things that are important to him amongst many others and these are not always predictable or constant. It can be extremely difficult to remain calm when a fully grown adult man is about to have a meltdown similar to a 2-year old having a tantrum.
Assessing his level of understanding and comprehension has been very difficult. This has obviously changed and improved as he has grown, but even now it varies greatly. He is now independent enough to catch an Uber and spend some nights alone, but much of his speech, reasoning ability, logic and games that he plays are at the level of a very young child.
What surprising joys have come from being a mom to Luke?
After reading the above paragraph, it might seem that parenting Luke has just been hard work, but there have certainly been many fun and happy times and he has brought us much joy.
Luke is an extremely loving child and unlike many Autistic people, he loves to be affectionate. There are probably not many 21-year old boys who still love to hug their Moms! He is also affectionate in his speech and tells his family often how much he loves them.
Of course all children bring their parents pleasure and joy when they accomplish new skills and reach new goals, but the joy is heightened when a child with disabilities manages to do things that might have seemed impossible. His first words and then his ability to talk in sentences were never taken for granted as with a normal functioning child. Recently he has progressed greatly in becoming more independent and this too has surprised and pleased us.
Luke also has a good sense of humour and likes to make us laugh. He is a good mimic of others and this keeps us entertained.
We have had some lovely holidays with Luke and this has often surprised us, as going away to different places can and has been at times difficult for him.
In 2015 after much thought and prayer, we nervously decided to take him on an overseas holiday to England as both Kevin and I have siblings living there. Previously we had left him with his grandparents when we travelled overseas. We were really not sure how he would cope with the flights and the travelling around England, but he completely surprised us by coping with everything and loving every minute of it. These and some other occasions have been like gifts from God.
Luke has also brought joy to other people’s lives and most people that he interacts with find him polite and charming. (He tends to save his difficult side for us at home!) I know that he has a very special place in his grandparents’ hearts, especially Kevin’s parents, who have been extremely involved with him and have had him to stay frequently since he was a little boy. Even now one of his favourite things to do is spend a week with Granny and Oupa in Howick and he has recently learnt to catch the Greyhound bus there and back on his own, along with Peter, his extra-large soft toy dog!
How has the church and broader community responded to Luke – positively and negatively?
Other than some strange looks and stares when Luke has been behaving or talking in what seems to be an inappropriate way, we have not experienced any negative responses to Luke.
He does not immediately look different, other than his cochlear implant speech processors. I have heard some children asking their mothers what those things are on the side of his head to which most Moms usually respond ‘shhh!!’
I never mind engaging with strangers who have asked about his cochlear implants and am very happy to explain.
The church community have been caring and supportive and many in our church family have made a real effort to get to know Luke and engage with him. He responds well to these people and enjoys interacting with them.
When he was much younger, Sunday School was difficult for him as his level of understanding did not allow him to take part in age appropriate groups and his difficulty with socialising made the big groups uncomfortable. At this time an older lady teaching the Sunday School picked up on his needs and offered to take him on his own for lessons. We have also been blessed with a number of people from our church who have offered to take Luke on outings and spend time with him. Initially Luke was nervous about spending time with people he did not know well, but over the years his confidence has grown and he now really enjoys these times. Needless to say it also gives us a much needed break and we have really appreciated these times.
Please give us some insight as to some unique challenges your family faces and are likely to face in the future with regards to Luke.
At the moment Luke is attending the Adult Program for People with Autism (APPA). This is a day program for autistic adults which is now in its 4th year. At APPA they keep busy with a wide variety of activities designed to stimulate them and further their independence skills. These include computer skills, workshop activities, cooking, gardening and exercise programs. Luke has also started as a volunteer in a nearby Charity Shop, two mornings a week.
It is an ongoing challenge to keep him as busy, productive and stimulated as possible.
Up until about 3 months ago Luke has been living at home while attending APPA, but we have been realising the need for him to start living more independently of his family as we might not always be able to care for him and of course chances are good that he will outlive us.
There are options of residential facilities for mentally handicapped adults, but nothing specific for Autism. We have looked at some of these facilities and his name is on some of their waiting lists but ideally we would like to set up a residential facility attached to APPA specifically for Autistic adults.
For the past 3 months we have been trying out a plan of supported independent living.
This involves Luke spending 5 nights a week at a garden flat in the property of friends who live nearby. I am on hand to provide food and transport for him and see him every day but he spends the nights alone and is managing to either heat up ready-made food or cook and prepare simple meals for himself. He is also learning to use Uber on occasions.
So as you can probably gather, the main challenge now and into the future will be deciding on the right living plan for Luke, in the right environment with the right amount of support but allowing him to be as independent as possible.
Financially we also have to plan ahead and ensure he is provided for, for his lifetime.
As a mom of a special needs child, what insecurities and fears do you struggle with?
I think the biggest fear I have and have struggled with all through Luke’s life is fear of the future. Initially this was around what school would he attend and whether he would cope with school. As he grew, I was anxious each time it was clear that he needed to move to a new school. When he was 15, he started as a weekly boarder at Unica School in Pretoria and I experienced much anxiety over whether he would cope with that.
When he turned 18, we knew he would have to leave school and we would have to find an adult program for him. God has proved faithful every step of the way providing for Luke the right place at the right time and strengthening him and us to cope with each new situation. Through this journey I have learnt to be less anxious and to trust God more – trying daily to put Philippians 4:6-7 into practice: ‘Be anxious for nothing but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God which surpasses all comprehension will guard your hearts and your minds in Christ Jesus’
Luke’s behaviour has tended to go in cycles – periods of relative calm and stability followed by periods of difficult, frustrated and angry behaviour.
These periods can last anywhere between a few weeks to a few months and they have always been unpredictable in nature. My anxiety levels always go up significantly during the difficult periods and it has been a real challenge to continually turn to God and trust in Him when melt downs are happening frequently. Again, looking back, God has been very faithful to His promises.
What advice can you give to moms and others in how to encourage or engage with families of special needs children and with special needs children themselves?
Spend time with the family and especially the special needs child. Get to know the child and his special needs, his likes and dislikes and let him become comfortable with you.
Don’t be shy to ask the parents questions about their child. Like any parents, those of special needs children love talking about their children, even if this sometimes brings tears to their eyes. Once you have developed a relationship with the child you will be in a position to offer to look after the child for short periods of time. That is probably one of the biggest gifts you can give to a parent of a special needs child – a break from the constant care that many of them demand.
Not everyone is in a position to help looking after the child and in these cases just show love and care and pray for the family. I can recall countless faithful friends who have been a listening ear and have shown acts of kindness to our family which have meant a lot. When Luke went off to boarding school at the age of 15 a dear friend gave him a large soft toy dog because she knew that he loved soft toys. That dog has been his dear friend and companion ever since!
Others, who have walked this road with us since Luke was very little, have been able to help give us counsel and guidance when we have had big decisions to make. It has helped so much in all these situations to know that we are not alone.
To Moms who are starting this journey with special needs children I would go to Matthew 6:34: ‘So do not worry about tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own.’
Take one day at a time. Trust God for the future and do not be anxious. Enjoy your child where he is now. Do not look back wishing you had done things differently and do not anxiously worry about what is to come. God is Sovereign over the past, present and the future. Trust Him for the grace you will need for each day.
Ask others for help. Many are eager to help but do not know how unless you ask them specifically. For many years I felt that Luke was my child and I should be able to cope with him on my own. That is pride and it has taken humility to ask others for help or to admit that I cannot always cope on my own.
Ensure that your other children get some special attention of their own. A special needs child can take so much time and energy and normal functioning children in these homes often grow up and become independent faster than normal. This means we can expect more from them than usual and this is fine and helps them in their development but they also need some special times alone with you. We took Debbie away on a number of special holidays that Luke would not have coped with, leaving him with Kevin’s parents. These were wonderful times for the three of us to enjoy normal family interactions. Even short times alone with your normal children can fulfil this and it is important to do this regularly.
Meryl was born and raised in Zimbabwe and came to know the Lord as her personal Saviour as a teenager. She studied Physiotherapy at the University of Cape Town.
She has been married to Kevin for 25 years. Outside of being a mom to Luke and Debbie, she works part time as a locum for a Physio practice.
She loves leading Ladies' Bible Studies and is also an avid long distance runner. One of her favourite pastimes is hiking with family and friends.