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Moms of Spectrum

Mother turned advocate

Desiree is a mother to Haans, a seven-year-old autistic boy. She is also the founder of Project Haans, a board member of Kiwanis Club of TTDI and a business owner. In an interview with Mothercare, she debunked myths about Autism and encouraged parents to ask questions and get support from other parents. As an educator herself, she wishes for a more inclusive education system.

Accepting with love, rejecting myths

Desiree first realized something was different about her son when he was around 18 months old. He didn't respond to his name being called, he didn't make eye contact, and he didn't communicate like other children his age. 

After consultations with friends and doctors, Desiree believed that her son might be autistic and did not expect him to grow out of it and be like other kids his age. 

Desiree's first acceptance and detailed observation led to Haans being diagnosed with Autism when he was just two years old.

"I believe it is never too early to diagnose the child," she said.

 

According to CDC, Autism spectrum disorder (ASD) is a developmental disability caused by differences in the brain. Some people with ASD have a known difference, such as a genetic condition. Other causes are not yet known. Scientists believe multiple reasons for ASD act together to change the most common ways people develop. While we still have much to learn about these causes and how they impact people with ASD, The American Psychiatric Association's Diagnostic and Statistical Manual, Fifth Edition (DSM-5) provides standardized criteria to help diagnose ASD.

 

 

As Haans got older, it became more and more apparent that he was on a different path than other children. 

Desiree has invested a lot in learning about Autism and obtained a Master's in Special Education from Universiti Kebangsaan Malaysia. She is currently an active advocate of Autism, cofounded Project Haans and is a board member of Kiwanis Malaysia.

Her courage, confidence and knowledge of the subject matter have led her publicly debunk the biggest myths she's heard about autistic children.

One of the myths was that autistic kids are incapable of feeling emotions. 

Generally, there is a belief that autistic children have difficulties with empathy. One theory is that this is due to problems with the Theory of Mind, which is the ability to understand other people's mental states. This theory suggests that autistic children have difficulty understanding that other people have different thoughts, feelings and intentions. This can make it hard for them to empathize with others.

However, to Desiree, the issue is not about autistic kids not feeling but more of being unable to express emotions in the same way as other children. She knows that he feels emotions deeply. 

"Just because he doesn't show his emotions doesn't mean he doesn't feel them," she said.

Desiree also debunks another myth that Autism is caused by mental illness, bad parenting, or gadgets.

"I once was told by a GP who said it was my fault Haans is autistic. I did not take care of my food and well-being when carrying him.

Again, there is no scientific evidence to support these claims. We as parents or gadgets, are not powerful enough to cause Autism. Autism is a complex neurological disorder that is not fully understood," she added.

Raising an autistic child can be a challenge, but it can also be a rewarding experience. Desiree is grateful for all her son's progress and knows there's still more to come.

Desiree has also learned that it's important to ask for help when raising an autistic child. It can be a lot of work and overwhelming at times. But she knows she can't do it alone.

She has found a great support system from her parents and other parents of autistic children. They are a valuable resource and they understand what she's going through.

Using AAC as a form of communication

AAC, or augmentative and alternative communication, can be extremely effective for autistic children. Many autistic children have difficulty with verbal communication, so AAC can provide them with a way to communicate their wants and needs. 

AAC can also be used to help teach autistic children social skills and improve their ability to interact with others. In some cases, AAC can even help autistic children learn to speak. 

While AAC is not a cure for Autism, Desiree said it could be a valuable tool for improving communication and quality of life for her child and family.

 

Tips on using AAC are:

  • make sure to use simple language that your child will understand.
  • Be clear and concise when communicating.
  • Be patient when using AAC with your child.
  • Be supportive and encouraging when using AAC with your child.
  • Use AAC consistently and frequently with your child.

 

 

Early intervention

Desiree's detailed observation of Haans provided many benefits. By understanding her son's communication patterns, caregivers can better respond to the child's needs. This led to more successful communication and a deeper understanding of the child's thoughts and feelings. With early intervention, autistic children can progress significantly and lead happy, fulfilling lives.

In this journey of helping Haans develop important skills and reduce challenging behaviours, one of her challenges was to reason with professionals when it comes to her son.

Also, Haans faced several challenges that are not necessarily linked to Autism.

For instance, when she noticed her son not communicating, despite being able to imitate, she investigated and discovered that Haans had apraxia of speech. 

"He started to imitate, but words did not come, so we decided to look into it. We are now working with a speech therapist to address his apraxia of speech," she added.

 

An imitation is a powerful tool for teaching speech to children with Autism. Children who imitate the sounds and movements they see and hear are more likely to learn new words and phrases. Imitation also helps children to understand the meaning of what they are saying. Children with Autism can learn to communicate more effectively by imitating others' speech and actions.

 

 

As an educator, Desiree wishes for a more inclusive education system. She feels that all children should have access to a quality education regardless of their abilities. She would like to see more resources and support in schools for children with Autism. 

"Non-inclusive education is like trying to fit a square peg into a round hole. It's simply not possible. These children need specialized education and support to thrive.

. I would not want to do that for my child and thus, I opted for a different pathway when it comes to education," she said.

Children on the autism spectrum struggle with social interaction, communication, and repetitive behaviours. 

Traditional schools are not equipped to address these children's needs, so they often fall behind or become frustrated. Inclusive education can benefit children with Autism by providing them with a supportive and understanding environment.

"Inclusive education can help children with Autism to develop social skills and to feel included in their community. It can also help to reduce anxiety and provide opportunities for children with Autism to learn and grow," she said.

A father, husband’s unwavering support

Despite the overwhelming feeling of fear and apprehension, Desiree’s husband Nara was determined to do whatever it took to help his son.

Nara was not only Haan’s dad, but also his advocate. He attended doctor's appointments, therapy sessions, and school meetings. He took it upon himself to learn about various treatments and interventions, and he continually looked for ways to help Haans reach his fullest potential.

Nara was also an incredible support for Desiree. He was understanding and patient with her when she was feeling overwhelmed or frustrated. He encouraged her to continue advocating for Haans, and he always had her back when she faced challenges or criticism. Nara's dedication to Haans and Desiree was relentless.

He was always looking for ways to improve the family’s quality of life, and he was determined to make sure that the family had the resources and support they needed. He was a tireless advocate for Haans, and he did whatever it took to help him succeed.

Nara’s unwavering support for his son and wife has been an inspiration to many. He showed the world that it takes a village to raise a child, and he was a shining example of a father who never gave up on his son. He is an amazing example of a devoted father, husband, and advocate, and he will continue to inspire others for many years to come.

Where to get more information and help on autism:

1. Nasom

The National Autism Society of Malaysia (NASOM) is a society formed in 1986 by a group of parents and professionals with the aim to delivere lifespan services to the community of persons sufferring from autism. 

For more information, click HERE

2. Project Haans

Desiree lists down extensive lists of support groups, recommended books, as well as inclusive spaces for teenagers and adults with autism

For more information, click HERE

3. NARC

NARC functions as a one-stop knowledge repository and reference resources for research, services, training and curriculum development, consultancy and projects related to Person with Autism (PWA) in Malaysia

For more information, click HERE

4. Brainbow

Brainbow (USM) Sdn. Bhd. is a Universiti Sains Malaysia spin-off company. The company upholds Universiti Sains Malaysia's mission in research and academia to transform special education for sustainable development. The company aims to develop and provide original and holistic educational materials for special and inclusive education in Asia. The materials are developed from evidence-based research studies that are founded on the languages and cultures of Asia, to ensure the cultural and ecological relevance of these materials for diverse-ability learners in Asia.

For more information, click HERE

 

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