Autism: Inspiring mothers share experiences to raise awareness

Autism: Inspiring mothers share experiences to raise awareness
A child with special needs paints with colour at the Blossoms Preschool, Mokokchung. (Picture used with permission from the parents)

 

April 2 is World Autism Awareness Day

 

Morung Express News
Dimapur | April 1

 

A little over a decade ago, the United Nations recognized the need to observe World Autism Awareness Day to “highlight the need to help improve the quality of life of those with autism so they can lead full and meaningful lives as an integral part of society.”

 

On December 18, 2007, the UN General Assembly designated April 2 as World Autism Awareness Day and it was first observed in 2008.

 

Since then, it has been the endeavor of the UN in partnership with various stakeholders to fight the “stigmatization and discrimination associated with neurological differences which remain substantial obstacles to diagnosis and therapies, an issue that must be addressed by both public policy-makers in developing nations, as well as donor countries.”

 

The rate of autism in all regions of the world, including Nagaland, is gradually increasing and the lack of understanding has a tremendous impact on the individuals, their families and communities.

 

Today, two inspiring mothers share stories of their families’ journey to raise awareness on autism. Both Keren and Carla of Mokokchung know firsthand the challenges faced when caring for a child with the condition.

 

They have courageously spoken out about their respective sons, Noah and Asher, both autistics to mark the start of World Autism Awareness Week.

 

The Beginning

When Asher was about three years old, his parents noticed that he did not socialize with his peers or even his elder brother. He stayed by himself and did not develop skills like the elder son.

 

“We began to doubt that, perhaps there was something lacking in Asher. We were not aware he could have autism until we went for a diagnosis,” Carla says.

 

Unable to understand the cause of her son’s behavior, she gave in to the suggestions of elders in the family that he could be a late learner.

 

“That is what they believe and most people in our society do. I did not think it to be a serious issue,” she observes.

 

“As ignorant as I was, I had no idea that my son was autistic but I knew that something was not right about him,” shares Keren whose son Noah has been diagnosed with mild autism.

 

Recollecting Noah’s social adjustment problems while he was an infant, Keren admits, “Sometimes it was very difficult and I even felt very helpless.”

 

 

 

Seeking experts’ help

 

As time went by, Carla says, she began to get worried and feel sad because “you see your child is crying because he wants something but you are unable to provide because of lack of communication.” At that point, we decided to seek help from a professional, she adds.

 

Asher was four years old when his preschool teacher informed his parents that something is incorrect with his skills.

 

“Perhaps, he was showing some signs of autism,” his mother states.

 

The teacher recommended seeking professional help. “Taking her advice, we went to Precious Gem School run by Christian Institute of Health Sciences and Research (Referral Hospital) in Dimapur. That is when we were confirmed that my son had mild autism,” she informs.

 

Later, they went to ‘Shisu Sarothi’ in Guwahati and completed the CARS test. Asher was diagnosed with mild to moderate autism.

 

In case of Noah too, it was his preschool teacher who first took notice of his differences and advised his parents to seek professional help. With her help, they met Dr. Y Simpson, a Developmental Psychologist who is currently working at Christian Institute of Health Sciences and Research (Referral Hospital), Dimapur.

 

“My four year old son, Noah has a mild form of autism,” Keren reveals.

 

Learning and moving on

With the new reality about their sons, both the mothers are finding ways to make the journey easier.

 

For Carla and her spouse, they look for lots of articles and watch YouTube videos on autism and how to deal with it. They get updates from the website ‘Autismspeaks.org.’ “We also contact the psychologist at ‘Shisu Sarothi’ in Guwahati and they explain to us about how to deal with the kid and that is how we are moving on,” informs Carla.

 

Keren has realized that autistic children are very special who are characterized by different challenges; they can be very gifted and challenging. “I have learned to be more patient and try everyday to accept him as he is,” she adds.

 

Talking about challenges, “social skills” is a concern for Asher’s mother. He does not adhere to his behaviour like other children of his age do and he does not listen to instructions in a group. Initially, communication was the biggest challenge. He was unable to express and that upset his parents.

 

His mother also shares that Asher is also very hyperactive with lots of energy and someone needs to constantly monitor him. “He gets bored quite easily so we have to keep him engaged most of the time,” she shares.

 

However, on a positive note, after going through some intervention and training, he has started developing social skills. He plays with his elder brother and follows instructions as well.

 

“After we started practicing intervention techniques, his communication skills are improving. Now, my son tells us exactly what he wants and what he does not like. We have come a long way. It took us years to help him improve the skills,” she adds.

 

In case of Noah, his mother shares that he has very particular taste of company he wants to be with and activities that he love. “So sometimes it becomes very challenging to please him. My biggest blessings is appreciating every little moment and sharing simple joy with him.”

 

Accept the fact

“Do not live in denial but accept the fact. When your child is diagnosed with autism, accept it because that makes it easier for you. If you continue to live in denial, you are making the situation worst. The earlier you accept the fact, the better for you and specially your child,” Carla says while conveying to parents, “An autistic child is a special child. It is a gift to you.”

 

“Once you accept the fact, you would find solution to the issue. Your child can do something marvelously. You need to have patience,” she adds.

 

She also points out that in Naga society, many people are not aware of autism and pass comments which might hurt. “You are the best judge for your child. Thank God for this special child and take it as a blessing.”

 

Giving an advice to mothers and fathers who have a child that is on the autism spectrum, Keren recommends to “seeking professional help at the earliest.” She also suggests that one should not “expect much of someone without understanding the challenges they face every day.”

 

“Your child is beautifully created for a purpose. Love them unconditionally and be there for them 110%,” she adds.

 

* Some names and identifying details have been changed to protect the privacy of individuals.

 


 

A preschool teacher’s hope to create safe place for children with special needs

 

Morung Express News

Mokokchung | April 1

 

The proprietor of a preschool, Sashinungla Nathan has had personal experiences with children with special needs, particularly children with autism. Her first real experience actually began with one of her students at her school, Blossoms Preschool in Mokokchung.

 

Recollecting their first meeting, Sashinungla says that there was this one particular child who seemed lost and engaged in his own world. A lot of things about his behaviors were too new for her, as she had never worked with children with special needs.

“Whenever his tantrums began and he would shout, scream or even just cry with no obvious reasons, I would snap and did not know how to handle him initially. But after going through assessment and getting a proper diagnosis, it was very much easier to handle,” she says.

 

“I barely had any contact/experience with them. But now that I have, there is no turning back,” she asserts with determination regarding her plans to work with special needs children.

 

On breaking the news to parents about their children’s special needs, the teacher says so far most of the parents have been open and in acceptance of their children’s condition. Many have shared about being ignorant of children with special needs and just assuming that their child was being naughty or was hard of hearing and stuff.

 

“There was, of course, couple of parents that came across as defensive and not so pleasant to, which I and our staffs could not do much. It is a team work to make sure that children with special needs grow independently and blend in with the rest of the group,” she remarks.

 

With her encounters with a few special students in her preschool, Sashinungla wants to be more trained and equipped and plans to have a centre for such children in Mokokchung, creating a safe place for them to thrive in their own interest.

 

The one message she will like to give out to parents who may be facing similar situations is “not to be too defensive.”

 

“I don’t think that really helps our child. Early childhood experiences and learning will determine the child’s future. So if at all you do find something off in your child it is always better to ask for help. This is not embarrassing or demeaning in fact, it is such a blessing. It is time we shed off the old skin of being passive and put on a brand new one to face the world head on and create a better and healthier childhood for our children,” she states.