Do you know what it feels like to be parent?
For me, it feels like a piece of my heart has been broken off and placed into the body of another human being. And every time that person feels joy, I feel joy. And every time that person feels pain, I feel pain. And every waking second I am completely aware that a piece of my heart is living outside my body, feeling joy and pain, and could at any moment be taken away from me.
It’s beautiful and scary, amazing and horrifying, all at the same time.
When you are a parent of a special needs child who can’t get the help they need, then there’s a lot more pain than joy.
And that is the pain I now feel constantly.
My son Ayub is 7 years old and was recently diagnosed with mild autism.
- The problem he faces is that he is “too special” for mainstream government school but “not special enough” for a special needs school. Intellectually, he’s smart and shows huge potential for academics. But he’s failing his classes because he doesn’t get the support he needs, and because he learns in a different way.
- He has no friends. As an autistic person, he lacks social skills and is unable to read social situations, body language, facial expression, and tone of voice. He comes off as “weird” and often gets frustrated and aggravated when others don’t follow his strict set of rules.
- Ayub has low communication, and thus comprehension, skills. His language is limited, his sentence structure poor. He has a tendency to repeat words and phrases. He has an inability to explain himself clearly.
- He’s unable to express himself and regulate his emotions. This can lead to violent outbursts when others are simply unable to comprehend what he is trying to say.
At the same time, he’s highly creative yet insanely logical.
He doesn’t fit in to normal school. He’s intellectually too bright for special needs school. His therapists and teachers all fear he will regress should he attend either a school that is too mainstream or too special.
And then there is therapy.
- He needs speech therapy to help him communicate (and comprehend) better.
- He needs one-on-one therapy to learn how to socialize, and then move into group therapy with his peers.
- He needs occupational therapy to help him with his fine motor skills.
The therapy he needs will last a lifetime. Not just for a few months or a few years, but a lifetime.
Finally there’s me.
A parent of a special needs kid. Feeling alone but not lonely. Not fully understanding and feeling misunderstood. And at all times, completely overwhelmed.
Yet I know that other parents feel the same. I want to reach out to them, to help them, to be listen to them when they need someone to speak to. And I am sure they will want to do the same for me.
So far, I’ve only been able to connect with others through Facebook Groups, and it just isn’t enough. There’s no structure.
The Malaysian Global Innovation & Creativity Centre (MaGIC), Uber and Digi Incub8 are looking for the next big idea and I have one.
Maybe not the biggest, but it would mean the world to me.
To create a platform for special needs people and parents.
- A platform where schools that cater to special needs kids can post their listing, with location and fees, where other parents can leave reviews and make recommendations.
- A place where therapy centres can create their listing.
- Extra-curricular activities. Art, sports, science exploration, nature clubs.
- Paid classes. Free classes.
- Information for parents who have just had their child diagnosed.
- Parents who are lost and confused and have no idea where to start or what to do.
- Support groups. Play groups. A safe space.
For parents and also children and adults with special needs. To connect with people who can help.
I don’t know what this platform will look like. It’s just an idea. I want to create it.
I want to make it happen.
Not just for me and my family, but for all the countless families in Malaysia who need help too.