Wednesday, July 9, 2008

A Maasai and Autism

This is a short article from a friend of ours about her child with autism. The article documents some of the challenges she has had in bringing up their child in the absence of resources or information within the Maasai Community.

NOTE: I've had to edit it down a bit and remove some pictures because it wouldn't let me post the whole article with pictures and all that. I've also redacted her contact information because we don't want her bombed with tons of email. If anybody does want to contact her, let us know and we'll put you in touch.


Brian Ledama Dhillon: A glimmer of hope for children with Autism in the rural areas

When Ledama (Babu) was born nothing out of the ordinary was seen at birth. His parents took home a bouncing baby boy, with the exception that he did not take to the breast immediately he did so after five days.

Ledama(Babu) was born on the 15th November 2001, he sat down when he was 8 months old, he stood by himself when he was 14 months old and crawled after walking when he was 19 months old, and his 1st teeth came out when he was 7 months old. Babu uttered his 1st word (mama) when he was 9 months old for three weeks; however he never said it again until he was 2 years old.

At about this age I noticed that he was a unique child, who would not want to interact with other children, very hyperactive and seemed to identify himself with a particular object and color. He liked playing alone, was very high tempered and would break anything that was on his way. His greatest joy was watching music on television. At this time I knew my son was not behaving like other children of his age.

We took him to a neurologist who thought that he was suffering from delayed milestone/developmental delays, he advised me to be patient because he would catch up in time. Having been around children we were not satisfied with this answer and opted to seek a second opinion. He was diagnosed with autism Syndrome when he was 24 months old.

Babu was put on vitamin supplements to enhance his concentration and detoxify his body. As we researched for information about Autism and how to treat it, we tried everything that we read or were told to try by friends and relatives, along the way we noticed a great improvement in his development. Apart from lack of speech, Babu is able to interact and play with other children, he is able to communicate that he is hungry and knows where to get the food from. He knows what type of music he enjoys and demand for it. He understands when my mobile phone rings and he brings it to me, he understands that breaking items is wrong and he keeps them safe. He responds to commands.

Lessons learned in caring for Babu

· Patience

It’s an amazing experience of parenthood. Anyone who has a child knows just how hectic it can get in the home sometimes. Add on top of that a child who is not communicating or developing his or her social skills like other children of his age and you get to feel just how challenging it could be. Patience, kindness and love are qualities that I have leant; patience has strengthen my life as a mom.

· Research

Believing that a specific intervention works is simply not enough, research has become part of my life, I have learnt to seek for information on Autism and other behavioral disorders through my friends, relatives, internet and reading books.

· Non verbal communication

To understand what Babu wants was very difficult at first, the top search terms in my own personal data base of intentions were: “treatment and cure”. Instead I got “communication” and for that I am very, very grateful. Of course I still want treatment and cure for Babu, but the ability to communicate with him is a precious and unexpected joy which I have learned to treasure.

· Observation for health issues

Babu is a very active and jovial boy, because of this I have learnt to quickly read his body language and moods which helps me in identifying any health problems that he may be having, when ill he becomes withdrawn dull and inactive.

· Handling Children with other Special Needs

Babu’s condition has made me flexible and accommodating. Handling children with other disorders has become a routine in my life, it is so easy for me to detect a child with Special Needs in a group of other children and I try to assist that child in anyway I can.

· Empathy

Every parent with a child with Special Needs would always want to discuss his or her own experiences with other parents, to compare the progress of their children and to learn more ways of handling his/ her own children. This has become a necessary part of my life and has allowed me to be sensitive to other parent’s opinion on how to handle and to take care of children with Special Needs.

· Acceptance

I had difficulties in understanding my child’s behavior, which resulted in confusion in my inability to make sense of these behaviors, coupled with the problems in obtaining a diagnosis, made it difficult for me to accept his condition. I experienced relief and acceptance after the correct diagnosis was made.

Challenges of loving Babu

· Marital Relations

At first it was very difficult to relate well with my husband especially when we discussed Babu’s condition, we

Blamed each other and each others family in an attempt to apportion blame and try to console our selves. up to date, his condition have been the most trying times of our relationship, however we have learnt to put everything else a side in order to concentrate in assisting Babu to overcome this condition and lead a normal life.

· Communication

Communicating to Babu is still a big challenge for my family, despite the fact that he response to command, the understanding capacity is still low which makes the response slow at times.

· Fear of having siblings

The misery surrounding the Autism syndrome and the challenges the world is facing trying to unlock the mystery places a heavy psychological burden on any parent with an Autistic child. The challenges we go through in my family trying to make Babu Lead a normal life has made it very difficult for me to ever think of having another child. Babu being my first child has instilled fear in me that every time I think of him, the feeling of having another baby is something that I never experience.

· Social Relations e.g. with other children

Babu still likes playing alone and doing things on his own, as much as he interact with other children, he easily gets bored in their company and opts to stay and play alone. He sometimes becomes aggressive which makes other children to stay away from him.

Triumphs experienced with Babu

· Recognition and Memory

Babu’s memory has improved tremendously. His father is always away from home because of the nature of his job, initially Babu could not differentiate between his father and his fathers friends. When his father comes home from work, Babu would not react like any other child who would be exited to see his dad; he would not run towards him or hug him. Today Babu is able to distinguish between relatives, friends and strangers. He misses us when we are away. We can tell the joy in his face when we get back home. Every time he visits places he remembers and recognizes his playmates and object. He remembers where he left his toys.

· Toilet Training

Toilet training has proved to be a big challenge for me; it used to be very difficult to get Babu to seat on the toilet without his trousers. Today he agrees to seat on the toilet. Being patient with him has made him improve, although he is still not able to take himself to the toilet, he is able to communicate that he wants to go. Unless you have been with him for long, you still can’t tell that he wants to help himself. Whenever we travel we have to put him on diapers.

· Self Feeding

Babu’s greatest achievement and my greatest relief was the fact that he learnt how to feed himself. At first he could not even hold or lift up a spoon, the amount of food he used to eat was the same as the one he would pour. Even though he still pours food and eats like a two year old, he has made great strides in feeding himself.

How we have assisted Babu.

My husband and I have been trying all we can to assist our little boy lead and live a normal life, despite our limited access to information, financial constraints, lack of training facilities and lack of vitamin supplements in Kenya that are necessary for him to improve his condition. With all these constraints we have managed to assist Babu develop to the level I have described above.

At the moment we have placed Babu in a public school which has been integrated with special education. The school has no facilities to train children with Special Needs, and there are only two government employed teachers who have gone through basic/general training on special education. This school is not our ideal choice but there is no center in the whole of South Rift region where we could place him.

___________________________________________________________ is an article my folks just sent me from the WSJ about visiting the Maasai Mara: Maasai Mara.
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