Arthur’s Dream Autism Trust (ADAT)
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This is Personal: Our Story
I first heard the word autism when my son Arthur was 4 years old. Nobody before then had mentioned it even though we had been going for clinics. I kept all his clinic appointments. This was my first baby so I had no reason to not go to clinics and visit the doctors. We would go to one of the best hospitals in the country. Throughout our visits, there is no Pediatrician who told me that there is something that I should be concerned about when it came to my son.
When he was about 3 years old, we went into hospital because he had an ENT infection. He had a series of tonsillitis infections and we were in and out of hospital with a lot of antibiotics taken at the time. He also had pneumonia and we had to be admitted to hospital. In our post admission process we had to see an ENT consultant. He was the first person who mentioned that my son was losing his hearing. What I had noticed was that he had become quieter child, had gone closer to the TV and had massive melt downs. He was an only child and according to me I did not worry much about these behaviors. He had also slowed down in terms of speaking, whereas he had a lot of bubbling and making single words by the time he was 2, he basically just spoke single syllables. I didn’t hear words from him. When I raised it with family and close friends they would say that boys speak late, so I wasn’t very concerned.
The hearing resulted in a cycle of tests to confirm why he wasn’t hearing. On one ear he had 60% hearing loss and on the other one it was about 80% and hence the reason why he would go closer and closer to the TV. We at first thought he was interested in the images because when he would see something interesting he would rush close to the TV. The ENT confirmed that his adenoids were swollen and were causing a blockage in his ear drums and therefore the ear drums were not draining water as they should. He had a procedure done at that point that removed his tonsils and adenoids and put grommets in his ears to drain the ear drums and the healing process would take a year. We had another waiting period to figure out whether he could hear. After tests were confirmed that his hearing was okay. Our next challenge was how to develop his speech and I became concerned and started following up by observing my child.
Even though we followed up with Pediatricians, nobody told me that he had autism. I went to Google and searched all these terms related to my son’s symptoms. The search terms that I entered pointed to autism. And after a long search, Google was the first to diagnose him with Autism. What I needed after this realization was a doctor to come out and tell me that indeed my son was autistic.
Around the same time I was interested in finding places where people were talking about disability of every kind. I wasn’t happy about the diagnosis I had discovered. The internet can be a really dark web. If you keep following article after article you will get very gloomy pictures of what something is. The things that I would read about autism were very scary. Most of the conclusions that I read showed me that my son was a child without hope.
A visiting education psychologist Swaziland had come to speak at my parents’ church. He was speaking about disabilities and inclusiveness in church and parents were asking a lot of questions. He explained to parents why kids won’t sit down during the church service and making noises that were not understood. My parents were in church that day and they told me that I needed to go see this psychologist. The following day he was at a school nearby diagnosing children. This is where my son was first officially diagnosed with autism.
My struggles with Arthur have been trying to define what autism meant to me as a mother. To me, Autism is a developmental disorder, which basically makes it difficult for a child to communicate or interact socially. What it has meant for me is possibilities to help my son overcome his challenges. Because he is autistic it means he needs certain help with tasks. He is a typical 12 year old behaviorally, however he has challenges with speech which we are working on with assistive devices and Picture Exchange Communication (PECs) and sign language so that he is able to communicate his thoughts. I try my best to draw a line between 12 year old behavior and autism. It is important for parents to differentiate whether the behavior the kid is demonstrating is autistic behavior or whether it is an age thing.
It was also a time of reflection and understanding how I would look at my son after the diagnosis. I had to decide what I was prepared to do for my child. Thus my journey began from here on. I was determined that the things that were written on the internet about children with autism and their outlook on life were not going to be my child’s story.
This begun the questions about his school and why they had not informed me that something was wrong. I started questioning why the school diaries said everything was okay and no teacher came up and told me that I should have been concerned about the way my child was behaving. Issues such as why he was not yet toilet trained at age 4 and he wasn’t speaking yet. The school should have come out and told me that there was something amiss with my son. Someone should have called me and said something was up or would have questioned me and asked why I was not concerned about my son not speaking and being toilet trained.
The struggle of what was happening the country as a whole had me questioning why it was very difficult for parents to be told about their children’s condition, why diagnosis on autism is not communicated to parents early enough. I have been through numerous challenges in trying to get a school for my son. I have had struggles with schools not being able to admit my son because they could not cope, I have had schools that have admitted him and then beaten him to have him quiet because they could not get him to sit down, meaning they could not cope with his Attention Deficit Hyperactivity Disorder (ADHD), I have had schools that have said it is okay to have him but let him roam around the school instead of teaching him and continued to take school fees, I have had schools that have forced therapies that he did not need and yet that money could have been put towards a therapy that he needed.
My struggle with Arthur and education is the genesis of Arthur’s Dream Autism Trust (ADAT). Our mission is to have inclusive classrooms for students with autism. Our strategy is to facilitate the building of classrooms in public schools. This will allow children to walk the least distance from their home to access an education.
Parents should not have to pay expensive school fees for children with autism to get an education. If primary school education in Kenya is free that means that autistic kids should be able to go to a public primary school and receive free primary education. The problem comes when schools even though they are willing to accommodate the child, do not have the facilities and resources to have the kids there.
We believe in working closely with the Ministry of Education because after the inclusive classroom has been built, the Ministry of Education needs to maintain those classrooms, assign teachers, send additional resources so that those children can continue to learn and thrive.
We have had good experiences with schools, where they have accommodated Arthur and invited him in, however because there has been a lack of trained teachers and specialists to take care of him, at the end of the day the school says they cannot do it anymore. Having professionally trained personnel, working in public primary schools, having those classrooms with required learning materials available is the problem we want to fix.
My experience with Arthur has convinced me that Early Childhood Development training should include training that equips teachers to handle students with developmental and intellectual disabilities. When your child goes to a kindergarten at age 3 or 4, the teacher in the school should be equipped to tell you that what is not typical of children at that age and recommend further tests for your child.
Ultimately, my task as Arthur’s parent, beyond loving him is to prepare him to lead an independent life as an adult and a large part of that now is to prepare the communities we are part of and the world we live in to make accomodations in readiness for this future. It begins with inclusive education.