A mother’s perspective
Akshana Shah can hardly keep her eyes off her son. It is outright that the constant attention shifting to him repeatedly after we exchange greetings is not only that of vigilance and concern, but that of admiration as well. The boy is the centre of her world.
‘When my son, Mikhil Shah, was born in 1999. he was perfectly healthy. Then things came tumbling down when he was two-and-a-half years. Mikhil had accompanied me to meet his grandfather, my father-in-law, at the airport, who to the shock of many, collapsed, unexpectedly.
We managed to rush him to hospital, where he was pronounced dead on arrival. The embers of sorrow burned within the Shah family. The fires of sadness eventually died down. However that did not pave way to happiness, for we noted with growing concern that Mikhil could not speak.
The doctors told us the loss of speech was as a result of the trauma of seeing his closest friend dying. We were reassured that our son would recover after a while. We held on to this hope, with the conviction that Mikhil was young anyway.
Our optimism was fortified with the fact that we had just moved to Kenya and that different people adjust differently to new surroundings. We gave him time to adjust.
Months turned into a year, and a year, to three. Mikhil turned three and he had not spoken yet. My husband and I then knew there was a problem. A friend from London told us that our child was autistic. That threw me off the handle. Our ignorance on autism made us regard our friend as scientifically ambitious.
With time though, it dawned on us that there was no way out but to reconcile with the fad that our friend could have been right. This was affirmed by exposure to autistic information, which we now sought. It devastated us, especially when she advised that we seek a special school for him.
I believe that my child has a mild case of autism. He feeds himself, wears clothes by himself. He will select matching socks to put on. unlike most autistic children.
My husband spoils our son by providing just about what the boy demands for. at the drop of a hat.
When I went back to my home country. India. I realized that people there were more knowledgeable about this condition. They are not wrapped up in warped traditions that consider autistic children as a curse in the society. The Indian culture is not one that points fingers at the mother, indicating that her child’s condition is as a result of wayward behaviour on the mother’s part.
I do not understand why my baby is autistic, though I was stressed while expecting Mikhil. I was also quite advanced in age: I was 49 It happened at a time when we had just moved to Kenya. I did not understand how to go about the baby’s needs and everything was new to me. including the culture.
What makes me sad is the that I cannot take insurance for my child. The insurance companies considered his condition a liability—yet there is need for constant health checks.
Mikhil is not aggressive at all. This is probably because of the peaceful environment that my husband and I have created for him. We ensure that we do not argue in his presence, settling our issues privately.
I love sharing and exchanging experiences with parents who have autistic children. I befriend them, mainly for the purpose of seeing’ to it that autism is not branded a burden, but a joy in disguise.
BY FELICITY NGUGI
Generally, babies develop at different rotes. While some develop quickly, others experience slow growth rates. If your baby appears slow, not cuddling or crawling like other babies, is constantly tired, cranky and unhappy, or displays an unusual delay in development, you should be concerned because they could be suffering from a nervous system developmental disorder known as Autism.
The immune systems of children born with this condition are always compromised such that any simple factor including certain foods or unclean environments can trigger it off as the child grows.
What Is Autism
According to www.wikipedia.org, autism is a brain development disorder that impaires social interaction and communication. It causes restricted and repetitive behaviour all starting before a child is three years old..
What are the effects?
Usually, this condition affects the child by delaying his speech development. They can either not communicate effectively or talk al all as they grow older.
They also experience difficulties in developing social relationships. They will always want to be alone, and develop difficulties in doing simple things such as putting on shoes or tying their shoe laces.
Autistic children usually have problems with breaking-down certain ingredients in foods that are considered good for body building, such as milk, wheat and citrus fruits. When eaten, these foods remain unbroken within their systems and consequently move on to the small intestines, from where they leak into their blood streams, causing hyper activity.
What is the cause?
Unfortunately, nobody knows the real cause of Autism. Research on the same has been going on for the last fifty years. So far, scientists believe that it is associated with slight abnormalities in some brain functions.
What are the symptoms?
When a child is born, the first thing that they do is touch the mother when they are breastfeeding. However, this feature may lack in an autistic baby. Additionally, they may not sit up, crawl or turn as is expected of regular babies. They also do not seem to respond to gestures such as being pointed or waved at. They are usually passive most of the time.
Other symptoms include:
o Lack of speech o Severe sleep disturbance o Chronic infections
o Unusual play with toys, for instance lining all of them up in a row
o Unawareness of their surrounding environment and the people in it
o Possible loss of hearing
o Repeating the same thing someone says, referred to as Echolalia
o Hand biting
o Having a musty urine odour
o Hyper activeness and aggressiveness
o Oblivion of dangers surrounding them. For instance, they may want to jump down from a high place.
Other conditions that may have characteristics similar to Autism include down’s syndrome, epilepsy and cerebral palsy. They differ from autism in the fact that autistic children do not engage in communication.
How can a parent know that a child has delayed speech early enough?
Babies have their own language. For instance, a three-month old baby makes a lot of noise the moment they wake up from sleep. As they grow, they start uttering the words ‘baba’ or ‘mama.’ They also start pronouncing words that they hear and pick from other family members. An autistic baby will be passive.
He may not utter any word and will most of the time simply smile broadly.
What is the diagnosis?
The only way to diagnose it is by observing the symptoms, because Autism involves behaviour.
What is the treatment?
There is no cure for Autism. But there are a few things that can be done to manage it. These include:
Dietary interventions—when foods such as milk, wheat and citrus fruits are withdrawn from their diets, they tend to calm down and are able to focus.
Autistic children also tend to have sensory problems. They are either over sensitive or under sensitive to sound and touch. Therefore, they need to undergo sensory integration programs that are facilitated by trained medical therapists in different categories. This is because different children have different issues. Thee are those that are low. medium and highly affected, thus categorization of autistic children.
Intensive behavioral modification should also be started early enough. This includes teaching them daily living activities, such as grooming and good behavior.
When should one seek help?
Help should be sought immediately a parent notices the symptoms mentioned. If discovered early enough, say at 18 months to two years, an autistic child can have a quality life. When managed early, one may discover that an autistic child also has certain skills. Some are excellent musicians while others are good mathematicians.
Are there cases of autistic persons in Kenya?
There are many cases. According to our assessment register, there are. currently, about 900 autistic children living in Nairobi. 55 children are already at the City Primary School undergoing management.
What advice can you offer parents and others?
Parents are always in denial when informed about their child’s condition. Some even go to the extent of taking their children to expensive special schools, hoping that the child will pick up.
I have a grandson who is autistic. We took him to eight special schools when he was young because we did not know about this problem. It was not until he was 14 years old that we finally placed a finger on the issue, and began managing it.
Parents with babies who either cannot talk or who display delayed autistic symptoms need to seek information, help and advice. The earlier the condition is discovered, the better, because from birth to about two years, the brain is still in an elastic state and a lot can be salvaged. By the age of six, the brain is already settled making it quite difficult to mould the child.
Guidelines to test and screen for autism should be included in baby clinics. Some hospitals are now aware of the condition as a result of sensitization on the same, and coordinating with them.S’
Ms. Felicity Ngugi is the Programme Director, Autism Society of Kenya.