What’s more terrifying than not knowing? What haunts me is perhaps different from what scares you but I am positive, at some point, there was a time when you were petrified at the thought of not being able to understand something.
I have always been an ‘over-thinker’. It’s like breathing to me. I know I’m doing it and I can’t help it. I’m overly curious and have the tendency to pick at the smallest detail. I’m not obsessive but I could be a pest when I feel the intense need to understand something and scent an endless ‘why’ in a conversation.
I’m a wife and a mum to two beautiful children. I love my family and I’d do anything for them but my son holds a very special place in my heart.
Cai is diagnosed with Autism Spectrum Disorder. For those who do not know what that means, relax, I am not going to go ‘medical’ on you. Simply, it means that my son sees the world in a different way than most people. It could be challenging and quite daunting, to be honest, but as a parent I understand that his autism is just a part of him. It doesn’t define him and it is not who he is.
The signs were subtle, at first. He’s picky with food. He doesn’t like loud noises and throws tantrums at arbitrary moments. But I thought those are regular kid stuff. I grew up with two brothers, lots of baby cousins and when my older brother got married I had the chance to take care of his children (four to be exact) at a young age. I haven’t seen a kid who isn’t picky with food, who likes unfamiliar screeching sounds and doesn’t throw a tantrum.
Cai hit all his growth marks. He smiled; looked directly in my eyes when I engage him in play, made bubbling noises, turned over, sat and crawled early. He even started to walk on his own at 11 months. When he started having trouble forming words that’s when I started to worry but people kept telling me it’s just a phase; that I think too much. I have a cousin who talked when he was seven and one of my nieces didn’t start talking until she was four. There were no physical signs to point that my son was having difficulty. He was physically healthy and active. To me and the rest of the world, he looked like a regular toddler who’s only words were ‘amma’ and ‘dada’. And that was where I had gone wrong. I should have pursued my initial doubts in spite of what people say and for that, to this day, I cannot forgive myself.
I am a Filipina, my husband is Bulgarian and Cai grew up hearing both Bulgarian and English. A lot of children grow up in bilingual households and ends up picking up both languages, if not one. But perhaps unconsciously, my husband and I felt that our son needed help. We were in Bulgaria, living near my husband’s family, and moved to Slovakia for work. Mainly, adults surrounded Cai and I was his only playmate. We felt that perhaps interaction with other children would help him develop his language and communication skills. We looked for a place where there is at least a teacher who speaks English, whom I could communicate to track his progress, and could accommodate Cai in class since our main objective was for him to socialize with children his age.
We found a Bulgarian kindergarten with English speaking teachers and fortunately the woman who met and talked with us was a ‘Logoped’ (Speech Therapist). The whole time she was talking to us I noticed that she was observing Cai as well. On how he behaves with me, his dad and with her, how he plays and explores the room. She was quite happy with him. Complimented on how bright and good mannered he was during our interview. But she advised us to first find him a speech therapist because it might be taxing for him to start mingling with other children if he doesn’t know how to verbally communicate. This was the moment when my doubts started to eat at me.
I couldn’t ask my husband because he knew as much as I did. The woman couldn’t take Cai because she was going back home to be with her family. She did give us contact details for a clinic in Bulgaria in case we decided to go back. But she couldn’t provide connections in Slovakia since what we need was specific. The therapist has to speak in English so I could communicate and ask questions on how I could help my son.
I never resented the fact that I had to move countries; continents even, to start a family. And I never felt that language could be a barrier, until that day.
I became possessed. I read a lot to begin with but this time I wasn’t reading for leisure. I had a specific topic I wanted to know more about and in my mind I would read and learn as much I could and nobody would stop me. I never realized what was happening until my husband pointed it out. I was becoming obsessed.
The more I learn the more signs I see and it was heartbreaking. I cry at night worrying if we’d ever find help, if I’d ever find the answers I’m looking for and I felt like I was about to explode. We kept searching for a place, a person that could help, and every time we come up empty I sink further. And as my son’s condition deteriorates, so did mine.
I knew there was more to it than speech delay I just didn’t know what and it was killing me. I started to lose appetite and curiously, gained weight. I lived on oreos and coffee for I don’t know how long. I stayed awake at night watching my son sleep thinking of a way to help him and a dozen other things that worry me. Back then, the only time I manage to get sleep is when my body collapses from exhaustion.
I plunged into depression, developed anxiety and became overly protective of Cai. I figured if I couldn’t solve this then I’m going to take care of him, make sure he is healthy and damn anything or anyone who tries to hurt him. I snapped at my husband at the slightest things. Unconsciously, I was blaming him for taking me to a place where I was completely powerless. He couldn’t do anything to help me because I didn’t want his help. What I needed was answers. I needed help for my son. And if I can’t find it then I could not and would not forgive or tolerate myself for being useless. Self-blame and self-abuse was very high and was the only stable thing during these trying times.
And while we hopelessly search for help, I tried doing the things those articles; stories, sites and journals discussed and suggested. But there’s only so much one can learn from a book. I wasn’t a professional, no one taught me. I could read and study all the techniques but the cold hard truth was, we needed human intervention. Direction.
The search in Slovakia was a fruitless effort and it took me a while to convince my husband to allow me to take our son to the Philippines. I had a strained relationship with my family back then and he was worried because most of the time he’d be away from us. But he knew that Cai needed immediate intervention and perhaps more than that, I needed direction. We were sinking and something has to be done.
Fortunately, we found a clinic near my parent’s house in Lipa City, Batangas, CDIC (Children’s Developmental and Intervention Clinic). I remember dragging my husband, still jet-lagged from our flight the night before, to find the clinic and set up an appointment with a specialist.
The day after we begged the secretary to call us in case there were some last minute cancellations we arrived at the clinic before clinic hours to make sure we were on the list. I don’t know what prompted the secretary to help us, perhaps it was our haggard looks or desperate expressions, but our one-day waiting period for a scheduled appointment could have taken months and I would always be grateful to her.
The check up with the developmental pediatrician went as I thought it would, at least where my son was involved. By this time Cai was wary of strangers and new places distresses him. His main means of escape was clinging to me like his life depended on it because he knows I wouldn’t let anyone touch him if he doesn’t want to.
Cai was unresponsive to the prompts and cues so the doctor mostly asked me about his behavior, his difficulties, like and dislikes and what he does on certain situations. I answered him faithfully and honestly. I didn’t leave out any detail and supplemented things that I know could help him diagnose my son.
During this moment, I haven’t had sleep for more than 72 hours. I was literally running on fumes. When the doctor told us that Cai was on the spectrum I only had one thing on my mind, what do we have to do? Within the hour we arranged for Cai to be placed on a class so he’d be on an environment where he’d learn to be around kids like him and perhaps acquire new skills. We placed his name on the waiting list for occupational therapy, first for behavioral management and later for other issues.
When we arrived home that afternoon I wasn’t tired, frustrated or angry. In my heart I felt like we’ve accomplished so much in such a short time and it would all be good things from there. For the first time in a long while, I felt like the sun was shining again in my world.
I finally found the answers to some of my questions. I now have an access to first hand knowledge should I have more questions in the future. We found someone, or a couple of ‘someones’, to help us teach and guide Cai. In short, we finally found hope and that was what we needed to propel us forward.