The First Time He Called me Mama…
I already have two beautiful children and was 33 years old when Mika born. Not too old — but I had 3 pregnancies prior, one of which was molar pregnancy and ended up with curettage.
My last pregnancy was a bit difficult — I was bedridden for several months because of the spotting and pre-eclampsia. But it was nothing compare the day Mika was born. The C-section procedure took longer than my previous 2. The doctor used forceps to help getting Mika out — caused several bruises on his face, head, and left arm. He didn’t immediately cry, and we didn’t meet right after I brought into my room.
Nonetheless, 2 years and 3 months later, Mika grew up just fine and become a very handsome and healthy baby. Everything is fine except one thing: He was diagnosed with Autism Spectrum Disorder by two different doctors — and Global Development Delay by one doctor. I remember vividly my husband and I were talking one morning and agreed on how Mika was different than his older siblings during the same age. He never responds when we call his name. He never points to show us what he likes or what he wants. He never calls me “Mama”. He has minimal eye contact. And he just babbles with meaningless coos.
It’s a great thing that we came on agreement early on so we could then agree on the next step: getting the diagnosis and have him screened for autism. I’m not going to share the details on the process as it might need separate highlight. Instead, I want to focus on the feelings and our thought process.
It’s not easy, I’m not gonna lie!
For some people, receiving a diagnosis is a relief. Others are taken aback, as if it came out of nowhere. However, a diagnosis can be a positive turning point in a child’s life in any circumstance. A diagnosis is critical because it leads to financing and programs that can benefit both the child and their family. It may lead to specialised treatment and appropriate accommodations. But it doesn’t mean that it’s easy. The first time we heard the diagnosis, we were pretty chill. There were no tears whatsoever because we already did that way earlier — when my husband and I knew for sure that Mika is different. That was when the waterworks happened. We just couldn’t comprehend the worst possibilities. So yes, it’s hard. It’s okay to be sad about your child’s diagnosis.
Focus on things we can control
For us, the most liberating part was when we stopped caring about how we looked in public. Yes, we adjust the way we travel, dine-out and do our recreational trips — but it’s not because of the public perception. It’s for our comfort. We can focus on things we can control, which is our family as unit, and not public perception which we’re definitely have zero control over it.
Other thing we can control is early intervention. After receiving the diagnosis, we want to start as early as possible to help Mika achieve his best potential. We understand that autism is not a disease. And GDD is a very common and wide umbrella. But want to start somewhere. And the doctors were agreed that sensory therapy is the first step of the intervention, and we can clearly see the progress now.
We know that therapy doesn’t have a definitive result or curative impact. We know that Mika will lead his own path and that path might be different and more difficult than others. We also know that having the diagnosis doesn’t mean that Mika is any better or worse than he was the day before. It doesn’t mean that his future is any different from the way it was the day before. But we also know that we can do and give our best to help him to be the best version of himself.
Nothing to hide, nothing to be ashamed of
What we want for our children is what everyone else wants for their children. It may take them a bit longer to get there, and it may require more involvement from us, but in the end, everyone wants their children to be healthy and happy. So there’s nothing to be ashamed of. We decided to tell our immediate family (with few exceptions) to actually share Mika’s story and so Mika has engagement with them. So they will know why Mika acts differently around them — or why he ignores you from time to time. It’s also a way for us to ask for help — so everyone can give him love and feel the love from him as well.
I’m a firm believer of the sayings “it takes a village to raise a child” because it rings true, especially with my last-born. We need all the support we can get — and we can always filter out all the unnecessary inputs from people if we’re not ready to hear it; or if we think it doesn’t suit us.
Small things matter
This is, in my opinion, the most important thing during our journey. With Mika, I know that, unlike other parents, we can’t take even the smallest achievement or milestone for granted. Just few weeks ago he was able to call me Mama. Not “Mama” per se (he still call me Baba) but it’s still a celebrated achievement. I cried that day — because it’s been a long time coming. And we continue to celebrate even the smallest milestone in his life. When our son started wearing his mask on without a fight; when he can play in the playground and wait for his turn; when he able to eat new food — we celebrated.
After the diagnosis, we then put a pause for a while. We told each other that we should never compared his achievements to other kids nor his older siblings. Mika will have his own path and milestones and we should help him to function to be able to achieve that. That’s why we decided to set aside everything that doesn’t matter. I know sometimes it tears you to guts to see your friends’ kids able to eat their meal in one sitting without a fuss — or how other kids already spoke sentences and communicate. Mika is leading a different path — which is not less meaningful — but totally different. And it is our job as a parent to help him get through that and celebrate his hard work.
Know that you’re not alone
Give yourself time. People react to a diagnosis of autism in different ways. Allow yourself some time to come to terms with the news. But do know that you’re not alone — help and supports are available. Even if things are hard now, they can get better. You or your child are still the same person as before.
If you decided to go for early intervention and therapy, you need to map out your conditions (family dynamics, career, time management and financial management) as it will affect everything in the long run. Online community provide a good moral support and suggestions when you feel alone or clueless. You can also reach Kids’ Development Center in your area and discuss with the expert there. If I have to be grateful for one thing, This is a great time to parent a child with autism. We live in the age of the internet and I can connect with another autism mom who lives several cities or even countries over and talk about our shared experiences.
I’m thankful for gadgets like iPads, which not only help my kid communicate but also allow us to share a moment while watching one of his favourite YouTube videos. I’d like to give a nod to the families who came before us. They were instrumental in paving the path for my son’s current perks. I hope I can do the same for others who will follow us.
We all know that autism is not an illness or disease with treatments or a “cure” — and autistic people have things they’re good at as well as things they need help with. Adam Soffrin mentioned that while you can’t change your kids — YOU CAN.
“Your child is still your child, whether or not he or she has a diagnosis of autism. Show them compassion, understanding, and kindness. Protect them from the evils of the world, but don’t hide them from it. Teach them to love and be loved. Remember that a diagnosis does not make them who they are.”
