The Path to Acceptance

“The first step toward change is awareness. The second step is acceptance”

– Nathaniel Branden

Hi! It’s Tito again! It’s my turn to continue with our story…

People, when receiving life-changing news (such as learning that your child has an autism), will most probably lead them to go through the stages of grief; denial, anger, bargaining, depression and acceptance. In some way, Jecelyn and myself have gone through with these stages while dealing with the kids being on the autism spectrum.

Just to regress a bit, even before Zander was diagnosed with autism, Jecelyn had a miscarriage of what was supposed to be our third child. This was in August 2016 – the baby had no heartbeat at 8 weeks of pregnancy. We were still somehow grieving for our loss when we learned of Zander’s condition. You could probably imagine how difficult it was, especially for Jecelyn, to cope with several challenges – one after the other. It was both emotionally and physically draining for her. But being a tough cookie as she is; she has been able to manage, so far. But being that tough didn’t exempt her (and myself) from going through the stages of grief.

So, going back to the boys being diagnosed with ASD, we did go through the DENIAL stage. Most especially for Phil, since all the while we thought he was just a normal, typical baby with slight developmental delays due to being born premature. We really couldn’t believe it at first. I was even convinced back then that the DevPed was wrong. But as the days passed after his diagnosis, we could observe that he did have some red flags for autism (e.g. sensitivity to sound, difficulty to adapt to new environment, lack of social interaction, etc.). For Zander’s case, the denial stage kicked-in before we had him assessed. We didn’t think that he had autism. This is probably because we didn’t understand autism as much back then. That is why for us, having AWARENESS is important. Once we were aware of the condition, getting confirmation of the diagnosis was easier. And being able to confirm the red flags helped us to get out of the denial stage faster.

We have also gone a little bit through the ANGER stage. There were times when we asked why must these things happen to us? What have we done wrong to deserve this? Because it felt like there were consecutive curve balls being thrown our way. Thankfully, we kept faith that the Lord does not give us trials we could not handle. Taking comfort on this faith, we continue to press on.

For us, the BARGAINING stage was somehow experienced while we were waiting for Zander’s assessment result. Oh, how we would have given everything we could just to get a positive result from the assessment – we hoped then that Zander was a neuro-typical child.

And then, there was DEPRESSION… we really felt sad, and for a time – hopeless. Especially when we were told that autism is a lifetime condition. We got really worried for the future of the boys. Will they still be able to lead normal lives? Have good friends and meaningful relationships? Will they be able to go to college? Will they be self-sufficient – because we know as parents, we couldn’t be with them forever? All these worries, if goes unchecked will bring any person down.

Fortunately, both Jecelyn and myself were willing to do all that we can to help our boys cope with their conditions. This may probably be the reason why we were able to reach the ACCEPTANCE stage in less than a year from Zander’s diagnosis. Having been able to accept the situation has given us the opportunity to focus more on how we can address the issue, instead on dwelling on how bad the situation is. We just wanted to provide the best care and support that we can provide for the boys – and this has made a lot of difference.

Currently, the twins are undergoing regular OT and early intervention sessions. This has helped tremendously improve their behavior and social interactions. They are still socially awkward and would still have occasional meltdowns, but the frequency has been greatly reduced. I attribute most of this to the early acceptance of the condition – and not to forget, the efforts and patience of the boys’ therapists and SpEd teachers.

So, to parents out there with children with similar condition, my unsolicited advice is: “Your child’s diagnosis is NOT the end of the world. Get through the stages of grief as fast as you can – learn to accept the situation. Seek help and get support.” We can make it through… and so will our children.

One of our rare family photo moments

The Diagnosis

Hi! I am Jecelyn, Tito’s better half. Let me continue with the story from where my husband left off.

And so we brought Zander to a developmental pediatrician (DevPed) last January 2016, based on the recommendations of the doctor that he be assessed for ASD. The DevPed suggested that we enroll Zander to a playgroup for him to be able to socialize and learn discipline. He added that maybe Zander is just delayed in speech and just need some time to catch up. Zander was then scheduled for a re-assessment when he turns 3.5 years old. We followed the DevPed’s advice and enrolled the twins to a playgroup.

On their first day in the playgroup, Phil was so scared. He did not want to go inside the room. He just hugged me tightly. The teacher allowed me to seat-in for five days to allow Phil to adjust since he did not want to be left in class. On the other hand, the new environment did not bother Zander at all. He just went inside the room right away. He was not interested with other children, though. He would just go around the room, opening cabinets, climbing up tables or lining up toys. After a while I could see him either sucking his thumb or lying on the floor flapping his feet. The boys did not participate in the school activity with action songs. They would both cover their ears. After a few days, I have observed some improvement with Phil. I was able to leave both of them in class. Phil can comply with the tasks given to them, while Zander needed maximum assistance. But still, they were not interacting with other children.

Off to Playgroup
Off to the playgroup

On October 2016, Zander’s follow up appointment, we were told that the DevPed we previously consulted with had already left the center. We were then referred to another DevPed from the same center. The new DevPed pointed out that the previous DevPed had a more conservative approach. She mentioned that Zander should have been recommended for an assessment for ASD right after our first visit. She also informed us that ASD can be detected as early as 18 months.

But my!!! The assessment fees were very costly. I can still remember my husband’s reaction (eyes and mouth wide open) when the DevPed told us the fees involved. Good thing we had a fund reserved for cases such as this. Otherwise wouldn’t have gone through with the assessment.

So we decided to proceed with Zander’s assessment. We were given questionnaires – for both parents and teachers – to rate Zander’s milestones, social behavior and other relevant information. The assessment involves a school visit by the DevPed. Zander will be observed on his behavior in class. There was a one-on-one session to assess his behavior when he is on his own. And another one-on-one session to assess his IQ. There was also a parent interview where the DevPed asked us about our observation on Zander’s behavior.

On Dec. 23, 2016 the result of the assessment was discussed to us. As the DevPed was explaining her observations confirming that Zander falls under the autism spectrum, I was barely listening. I was trying to control my emotions else I would have cried in front of the DevPed. The diagnosis highlights the need for support on social communication, restricted and repetitive behaviors and language impairment. Zander lacks socialization and communication with peers. He has sensitivity to sound and touch. He is also very active.

Zander’s Assessment Report

Zander was recommended to undergo occupational therapy and early intervention. We enrolled him to these session for one term (10 weeks) only. The sessions were too costly and financially unsustainable for us. That is why we decided to go back to the Philippines (Phil, Zander and I).

It takes time to get an appointment with the DevPed. In the Philippines, the wait or a DevPed appointment usually takes around 6 months to 1 year. This is due to the limited number of practicing DevPeds in the Philippines. In Bacolod, we have two DevPeds.

We were initially scheduled for a consultation in July 2017. Luckily, we were able to secure a slot in April 2017 with another DevPed in Bacolod City. We decided to have both Phil and Zander assessed. Zander to get a second opinion and just to check for Phil.

On the day of the appointment, the moment we entered the clinic, Phil started running around. The DevPed immediately brought this behavior to my attention. After the evaluation, the DevPed told me that Phil is also in the spectrum. Honestly, though I had concerns about Phil’s condition, I still could not believe what he was saying.

All the while we thought that Phil was a normal, typical boy. We thought that he is just delayed in speech and that was it. Phil is in a far better state compared with Zander. He has more language, is less active and has more focus. The evaluation pointed out that Phil displayed speech delay with inconsistent social communication skills. He has repetitive and restricted behaviors, echolalia and hypersensitivity to sound. He also has hyperactivity and inconsistent response to commands.

Phil covering his ears whenever he sees or hears new things

For Zander’s case the DevPed concurred with the diagnosis of the DevPed from Singapore.

Now, our current predicament is that both of our sons are in the spectrum. What happens now? What do we do?

The Beginning of our Journey

“While we try to teach our children all about life, our children teach us what life is all about.”

– Angela Schwindt

My name is Tito. My wife, Jecelyn, and I are parents of twin boys who were both diagnosed with Autism Spectrum Disorder (ASD). We have decided to write this blog to serve as our family journal as we journey through the world of autism. We would also like to spread awareness about autism and hope that our experiences would be helpful to other parents of children with similar condition.

Let me begin with our “love story…”

Jecelyn and I first met on January 2003. We were colleagues at a semiconductor company in Makati, Philippines. We started out as good friends and became a couple in February of 2006. We tied the knot on January 2010. During this time, Jecelyn and I were both working in Singapore.

We hoped to have kids as soon as we could, but we found it difficult to conceive; we even consulted a fertility doctor to help us on this. And after several attempts, an operation, and some medications, we were blessed to conceive with not just one, but twins.

As we were expecting the pregnancy to be delicate, Jecelyn and I decided that she would resign from her job and return to the Philippines when she is about to give birth.

On the fourth month of pregnancy, we were informed that we were having two boys. We decided to name them Phil and Zander – their full names taken from their grandparents.

Jecelyn’s pregnancy with the twins was not easy. She had gestational diabetes. We usually hear ladies use their pregnancy as an excuse to eat more; but for Jecelyn, it was not the case – she had to watch her diet closely. She even had to take insulin shots to control her blood sugar levels. She also had to go on regular check-ups and scans to see how the babies were doing. We noticed, even from earlier scans, that Zander was relatively smaller compared to Phil. The sonographer even told us once, that Zander would be lucky to make it out alive and healthy. But we believed he could.

Phil @ 16 weeks
Phil at 16 weeks
Zander @ 16 weeks
Zander at 16 weeks

I will always remember talking to the boys while they were still in their mommy’s womb. We ask them to be strong and to help each other out while they were still inside. We told them how excited we were to see them… to hold and kiss them. And it seems they were listening.

And so, our boys were born on the morning of April 25, 2013 in Bacolod City, Philippines. They were born a few weeks premature at 36 weeks because the doctors noticed that the discordance between the twins became significant. Phil was born healthy but Zander had to stay for a few days in the NICU because the doctors saw some infection in his blood.

Despite all those challenges, we were just happy to finally hold the boys in our arms. We were just blessed to have them in our lives. I could still remember my father calling them, “miracle boys,” when they were born… I sincerely agree with him.

Phil & Zander at 1 month

The first few months of being parents was a tough adjustment period – sleepless nights, late night feedings, and seemingly endless crying from the boys. But all those were worth it whenever we see those beautiful smiles.

During the first 12 months, their development was within what was expected. They were both happy babies. But, at around 3 months, Zander had began to suck his thumb to soothe himself to sleep; while Phil was dependent on a pacifier to keep him calm at times.

On their 6th month, we brought the twins to Singapore so that our family would be together. Jecelyn has decided to become a full-time homemaker and be hands-on in taking care of the boys.

As the months pass, we noticed that Zander was a bit behind with their milestones when compared to Phil. Phil could walk unassisted at 13 months; Zander was able to do this at around 14 months. At 14 months, Phil could speak single words; Zander was able to do it at around 20 months. At 18 months, Phil can already say two-word phrases; Zander was able to do it only at around 25 months. At two years old, we noticed that Phil had began learning new words, naming images, letters, numbers and colors – but Zander was disinterested. We thought back then that he was just not ready – that somehow he would show interest; so, we just leave him be.

During this time, we also noticed that the twins rarely interact with each other. They would seldom play with each other even though they were together most of the time. But they would still react when other people would play with them or talk to them; giving smiles, giggles or laughs most of the time. So, even with those delays and lack of social interaction we still thought they were normal, typical babies – just delayed because they were born premature anyways.

Also, at around two years old, we noticed Zander having poor eye contact and that he became very interested in lining up toys. He also developed a habit of lying in prone position and flapping his legs while sucking his thumb whenever he was bored. This sent red flags to us – but still, we did not seek any professional opinion on it.

Zander lining up his toys

It was around their 30th month mark that a pediatrician told us to consider getting Zander assessed for ASD. He also noticed the lack of social interaction, poor eye contact and very few words from Zander. And this is when our autism journey began…