Going the extra mile for my autistic child

By Jasmine Atieno
Monday, April 19th, 2021
Nancy Waira enjoys a fun moment with Dylan, her son. Photo/PD/JASMINE ATIENO
In summary
    • Autism is defined as a  developmental disorder that impairs the ability to communicate and interact
    • It is not a single condition but has many subtypes, usually influenced by a combination of genetic and environmental factors
    • World Health Organisation estimates that 1 in 270 people has autism worldwide.

Jasmine Atieno @sparkleMine

Girija Ramkumar’s journey to be a counsellor and special needs educator specialised in autism was borne following her son’s diagnosis with autism and the need to become fully equipped to care for her child. 

Her now 23-years-old son was diagnosed with the condition at two and half years old.

It was something new for the family and it took time for them to accept. This, unfortunately, caused a delay on his intervention, which started when he was four.

He was, nevertheless, a high functioning boy and developed faster. Unfortunately, at the age of eight, he got meningitis, which affected his brain and he regressed. 

“Initially, I was informed by the school in 2001 that he was not cooperative, was very hyper and unable to potty train.

They introduced me to a specialist for further discussion. He hinted about autism and we travelled to India for full screening.

My son was diagnosed in 2002 with autism and we started intervention. I stayed in India for two years and pursued a course in special needs, specialised in autism,” says Girija. 

When she came back to Nairobi, she started training him with the support of Oshwal Academy Nairobi. Her son studied in Oshwal Academy till he reached 20 years old.  

“His programme was always discussed with me and we used to apply most of the skills at home for the sake of progress in all skill area,” shares Girija.

Being a parent to an autistic child has not been a walk in the park, but the biggest challenge she has faced is the lack of awareness on autism within the community.

She has often come across people who either feel pity or sympathy or are fully ignorant of the condition or are afraid of these children when what they and their parents need is love, acceptance and empathy. Not sympathy. 

Nancy Waira enjoys a fun moment with Dylan, her son. Photo/PD/JASMINE ATIENO

For Mombasa-based social worker and mother of two, Nancy Wawira, her life changed when her youngest son, Dylan Kheri, now eight years old was diagnosed with autism.

She had given birth through caesarean section and had no major health concerns save for jaundice on day two after birth. 

At the age of one year and a half, Dylan developed speech, but it later disappeared.

He didn’t speak again and was hyperactive. When he was three, she became concerned and took him to a paediatrician, who upon assessment, diagnosed him with autism. 

She went for a second and third opinion and her fears were confirmed.

“My first reaction was shock as it sounded strange to me. I went online, specifically Facebook in parenting forums to inquire about the nature of the condition and what to do to help my son.

I was referred to institutions that helped me know the kind of support my son needed. I remember engaging an occupational therapist who would come to the house to assist him.

Most of my support system has been my family and mums with children on the spectrum who I have never met.

I had to be counselled too as the diagnosis left me shattered. Everyone wants a neurotypical child who achieves milestones as expected,” she reveals. 

An autistic child needs much more in terms of care, attention, emotional support and expenses. With it comes to therapies, supplements and medical expenses, all which Nancy has had to meet. 

“My son had mild seizures between age three and five years old, and we would end up in hospital. He had recurrent respiratory tract infections too. I remember a time he got lost after sneaking out of the house.

The problem with a nonverbal child is that he cannot explain himself. I had to keep him in the house and if I have to go out with him, I have to keep him tightly held because he feared nothing.

This is slowly changing because he is now verbal although only a close person will understand him. He plays with the other kids, but under adult supervision as he has low assertive skills.

He can be aggressive if he feels misunderstood or when his normal schedule is interrupted,” she shares. 

Unique children

Amongst the many challenges that come with being a parent is that it is also very exhausting; the child needs a lot of attention all the time.

Sleeping is also an issue, with parents are forced to stay awake with their children on some nights. 

Dylan is a picky feeder and the diet prescribed for him is expensive. Nancy sometimes lets him enjoy family meals when he is able to. It has also been challenging finding the right school for her child.

“When I found out that my child was different, I went shopping for schools that could accommodate him. However, they were quite expensive.

I took him to a teacher I trusted, the one who had taught my firstborn. She was good with the boy and gave me hope that my son can indeed learn.

She helped me in toilet training and speech. He is now in another school and he is continuing well,” she says.

The young mother encourages parents who have differently talented children to accept their children and identify their talents. Her son is very good with computer games and it is her plan to build on this strength.

“With an autistic child you celebrate even little successes. It’s like watching hair grow. He has been in normal schools since day one.

It is my duty and responsibility to keep in communication with his teachers daily. They understand him and teach him at his pace.

I have accepted that my child is different and I don’t pressurise the teachers because I know they are doing their best. I believe he will be a great person one day,” says Nancy. 

As an expert in the same field, Girija believes it is important for the community to understand that every individual is different the same way every autistic child is unique. 

They do not behave, communicate and socialise the way ordinary people do.  

Patience is paramount

“It takes time for them to accept and learn some concepts. Treat them equally, accept and respect the difference. Parents, be patient, do not rush children as per your expectation.

Autism is a different disorder compared to speech disorder. Always give all the best for the child and wait for the results,” she says, adding that achievements differ based on the ability of the child. 

“There are a lot of support groups available for parents and they help in equipping them with relevant skills as well.

Also, you can even form a small parents group, discuss but do not compare. Live your life and let the children equally live theirs on their pace.

There are a lot of schools available, meet the professionals and get their advice,” advises the counsellor.  

World Autism Awareness Day is an internationally recognised day on April 2 every year, encouraging the world to take measures to raise awareness about people with autistic spectrum disorders, including autism and Asperger syndrome.

Under normal circumstances, the Autism Society of Kenya  would either hold a walk, or road show to sensitise the public about autism. Unfortunately this is not going to be possible this year due to the pandemic. 

As the CEO of the society, Felicity Ngugi says, lack of funding for the last three years has made most field activities impossible.  

“As much as there is no available data on the autistic population in Kenya, we have contacted 734,250 people within ASD.

We have no funding, thus making it impossible to have any activities. Assuming we have the money, Covid-19 is here with us and no public gatherings are allowed,” she said.

Autism Society of Kenya, in partnership with other organisations, has supported many parents and guardians to ensure most humane treatment of children living with autism. 

“When parents and guardians start noticing issues such as delayed speech, hyperactivity or even unusual aggression, we advise they seek appropriate diagnosis from a pediatrician usually at Kenyatta National Hospital with whom we work closely.

Indeed, we have created massive awareness, so people contact us and we refer them to be sure.  

We must understand that despite that autism is not a disease, it is a disorder managed through processes such as dietary interventions, occupational therapy and many more.

Autism Society Published a book, which helps to understand some of these processes which it available at the society’s offices.