Perhaps if we had had children before him, we would have noticed earlier that something was amiss, but as it was, Enitan was our first child.
As his name depicts, there was a story behind his birth.
We had gone through a long period of infertility and had been told by doctors that we could not have children. The medical evidence to support this opinion seemed overwhelming, but as practising Christians we believed that in every area of our lives, God, not man, has the last say in our lives and so we trusted and believed God for children.
Many years (and numerous miscarriages later,) our wonderful, beautiful, perfect son was born. All the pain and agony of the former years were forgotten as we stared in awe at our miracle baby in the delivery room.
He had so much hair, thick, curly and black and the longest eyelashes I have ever seen on a boy; gorgeous, the spitting image of his dad.
And so we settled down to the business of caring for our new son, fussing over anything and everything that concerned him.
Despite being pretty well endowed in the breast department, I was unable to produce sufficient milk; I would use the breast pump for about an hour and barely manage to produce 4oz. In the end we decided he was not getting enough and decided to put him on formula milk.
The minute we did this, we had problems. He developed horrendous constipation. Four or five days would pass without a bowel movement and when he finally did he would scream in pain and he would bleed. None of the drugs given him for his constipation worked and in the end even though he was so young, we were given suppositories to insert in his anus as that was the only way he could go.
We began to notice other things: His stomach was always extended; he would sweat profusely during the night and vomit in his sleep. He didn’t seem to be able to keep his milk down and was prone to projectile vomit.
He also seemed a very unhealthy baby. He was always catching one infection or the other and had recurrent ear infections, which were treated repeatedly with antibiotics. (A huge mistake we later learned).
A Hyperactive Baby
As he grew older we began to notice other things. He was hyperactive. He would not, seemingly could not, sit still. He did not seem particularly interested in his toys, rather than play with cars appropriately, he would turn them on their side and spin the wheels for long periods of time in an almost trance like state. Rather than build with his building blocks, he would line them up in a straight line and would cry if we moved them. He stared endlessly at bright lights and would sit silently looking out the window for ages. He walked on tip-toe and seemed to look ‘through’ us rather than ‘at’ us.
When we put him on solid foods, he would choke. He did not seem to be able to chew and his constipation grew worse. All his milestones were delayed. He didn’t crawl for ages and did not walk until he was 16 months old. If he was excited he would jump up and down and flap his hands. He made strange, deep guttural noises and touched different textures in a manner that seemed weird. He sometimes appeared deaf. You could stand in front of him and call his name and he would not respond, but would then respond disproportionately to quiet background noise.
At about 12 months he started talking and had some phrases, but at about 18 months, he seemed to lose them and stopped talking. Despite these, Enitan was an extremely placid, happy child with a smile that would melt the hardest hearts and never any trouble. Still there was this nagging feeling that something was not quite right.
Then one day it all came to a head: I read a newspaper article where the then minister for health was accusing the medical profession of labelling an increasing number of children as being autistic. Later in the article she described how she had visited a special school and only 2 or 3 of the children she had met had the characteristic ‘gaze avoidance’ that autistic children are supposed to have.
‘Gaze avoidance’? It suddenly hit me….
Until this time I knew little about autism or its characteristics. It was however topical at the time because some parents had said the MMR (vaccination) had caused their children’s autism. All I knew was that it was a condition that you heard about, out there somewhere, a tragedy that blighted other people’s lives, but could never, ever come near you. There was no way God would let that happen…..
But the niggling feeling within me grew stronger. I was scared to say the word, as if by saying it I would be giving it creative power. But in the end I was forced to share what I had read with my husband. I ended the conversation by stating I had not mentioned anything earlier as I had not wanted to scare him. It so happened that he had not mentioned anything to me for the exact same reason.
He then shared with me how he had taken Enitan to the park recently and how he watched all the other children who seemed to be so inquisitive about their world, whereas Enitan did not seem to be interested in anything, but swinging back and forth over and over.
That night we decided we would both spend a week researching autism and then compare notes. We assured ourselves that there was obviously no way that he had autism, but we would do it all the same.
All I can say is “thank God for the internet” that gave us all the information we needed. After our week of researching it was clear that he had autism and of course our world fell apart. We then had to get a formal diagnosis.
People think that the western world knows a lot about autism: That is not necessarily true. Most health professionals still do not know how to recognise autism and even where they do, they are reluctant to pronounce it to the parents due to the devastation it will bring. Rather they may say “he’s just a slow developer; he’ll talk soon, just give him time”.
Time is the one thing that an autistic child does not have…. You have a window of opportunity between birth and age 5 or 6 while there is still some brain plasticity that can be moulded, but you need intense intervention to do so. That’s not to say an older autistic child cannot be helped, but it becomes harder as they grow older and their bizarre behaviour takes root.
Our doctor referred us to a paediatrician who thankfully was not only very versed in autism, but was up to date and open to trying many of the interventions new research was showing could greatly help these children, such as ‘Applied Behaviour Analysis’ , (otherwise known as Lovaas therapy), bio medical and diet intervention, etc.
Once we had our diagnosis, there was nothing to do but to grieve. The grief seemed endless for both of us and we of course grieved in different ways. Despite his grief, disappointment, fear for the future of his son, my husband’s love and commitment to our son and our marriage never wavered for a second and we set about the impossible task of getting on with our shattered lives, making major life adjustments, (I had to give up my job to care for our son full time). By this time we had had a second child and so we now had an added financial strain.
More importantly, we began to put strategies in place to help our son. I had read somewhere that it is vital to keep talking to autistic children, so they have less opportunity to disappear into their own little world. I would talk to Enitan all day long, taking him with me all around the house. He was not to be left on his own for more than 30 minutes in a day. We vocalised everything. “Enitan is going up the stairs,” “Mummy is holding a glass.”
We got a speech therapist who gave us strategies to make him talk. She explained the importance of non verbal communication, such as eye contact, so when talking to him we would put our finger under his chin to make sure he looks at us first. “Look at me” became the most used phrase in our household. She advised us to break language down to the barest minimum, no long sentences, only clear direct speech. “Sit down”, rather than “can you go and sit over there please?”
We had an occupational therapist who helped with coordination etc. There was a constant stream of strangers coming in and out of our house. We are a very private couple. It was intrusive and exhausting, but necessary. At this stage we weren’t really concerned with what they were doing per se, we just wanted to make sure he got used to interacting with other people.
We were told it was important to make interacting with people fun. There were lots of tickling games, over the top praise, “Yeah, Enitan said ‘cup’.” “Well done Enitan! Good boy”
We started an intensive therapy programme called Applied Behaviour Analysis. This is where tasks are broken down into bite size pieces and once one part is mastered, they go to the next stage.
We also changed his diet.
There is a lot of debate about what causes autism, some say it is genetic, others that it is caused by vaccination etc, but there is an autistic school of thought that says it is caused by a faulty digestive system (often referred to as ‘leaky gut syndrome’) . This is where because the gut is faulty, digestion is not going on the way it should do, peptides cause the gut to begin to leak and food that should be digested begins to enter the blood stream and carries it to the brain which interferes with brain function. I personally believe there is a genetic disposition towards autism, but identify totally with the leaky gut theory as it is characterised by constipation, etc which were all present in my son’s infancy.
In order to rebuild the gut, certain bio medical interventions had to be employed. I learnt a new language of enzymes, amino acid, fatty acid, IQ (a brand of fish oil), zinc etc and learnt the essence of these on brain function and child development.
Our friends were fantastic. They began to research on the topic and would send us any information they could find (and still do). I read Lyn Hamilton’s book, ‘Facing autism’. It was an eye opener and very informative, as well as Catherine Maurice’s excellent book, “Let me hear your voice,” which gave me hope and introduced me to ABA. Catherine had 2 children on the autistic spectrum that both ‘recovered’ and have gone on to be indistinguishable from their neuro-typical, “(normal)” peers. I also read ‘Sonrise’, a book by Barry Kaufmann whose son also ‘recovered’ from autism through a similar programme.
Today, Enitan is a very happy, affectionate, handsome 8 year-old boy. He attends a special school for 3 days a week (a painful decision we made after he attended main stream school for 2 years). It was clear he was going to get more and more lost as he did not have a basic understanding of the work, nor the ability to carry it out. Neither was the school able to cater for his particular needs).
He still continues his ABA programme at home for 2 days a week and it is to the principles of this programme that I attribute the majority of his progress.
Although he is now verbal, his speech is much delayed, but his vocabulary is broadening all the time. His self help skills are also improving. He can get his own cereal and needs very little help to get dressed. He can also carry out basic chores.
What does the future hold? Only God knows. In the early days of his diagnosis I nearly drove myself insane by dwelling on questions like that. “How will he cope?” “Will he ever have any friends?” “Will he ever get married?” “Will he be able to work”? Thankfully we have come to a place where we can use our time concentrating on the things that are within our power to affect and are productive for our son.
First of all, we love him unconditionally and ensure that we enjoy every moment that we can with him. We have made a decision to concentrate on the wonderful things about him. We will do our best to teach him independence skills and make as much financial provision as we can for him, for after we are gone…. The rest is in God’s hands.
Writers note: Writing this article has been a long and painful journey, but it had to be written for the sake of the thousands, (yes, thousands) of Nigerian parents who have children with disabilities and are held captive by the fear of “what will people say?”
Unfortunately in our society, ‘Image is everything’. Seemingly, we must live in the right neighbourhood, drive a certain car, be persistently immaculately dressed and we must be able to boast about our children at social gatherings. After all, they are all part of the image.
So where does that leave a family with a child with a disability? At best marginalised, at worst totally outcast.
I cannot tell you the endless stories of parents keeping their disabled children indoors and hidden for years on end for fear that someone might know they exist. One woman recently told me of how her cousin was kept in a cage that was not big enough for him to stand up in until he died; another of a friend of hers in Nigeria who has non-verbal autistic twin girls and calls her everyday from Nigeria crying and depressed.. She says she can’t take the children out because people are laughing at her. They do not go to school….
I will always remember a story my father told us of a family we knew who had a physically disabled child. One day when my father asked after the child, the father of the child confessed that in the end they had murdered the child one night. MURDERED THEIR OWN CHILD. I understand this is not uncommon.
We must change the way we think. The fact that a child has a disability does not make them a write-off or less worthy of love or of a life. It may mean that some of the dreams we dream for our children will have to die or we may have to dream a different dream and if we must lose some friends and family along the way because of them, so be it, but as parents we should be prepared to climb any mountain for our children. They are worth it. At least I know mine are.
Bimbo Clement is a practising Christian. She lives in London with her husband and two sons. She runs an Employment Law consultancy and is founder of Black Businesses, (a business group for black professionals). She can be contacted at bebe_clement@hotmail.com
