Five years ago today, I felt specially blessed because at last, I was coming home from the hospital with a living and breathing 4000g baby after the heartbreaking losses of the previous two years. I have been a thankful mother, since then. I thank the Lord everyday for this gift; a source of joy not only to us but to many people who knew our story.
Since Saturday, I have been trying to process the new challenge that has besieged our family. I was telling a good friend the other day, that it seems, no year passes me by without something throwing me down to my knees with my face to the ground begging the Lord for more grace to face my days. Today, it finally sank in that indeed, my little boy is different. For the longest time, I knew that there was something going on with my boy, but my Igorot human mind keeps telling itself that the reason why my boy does not talk and behave like other kids his age do is in all likelihood attributable to the fact that he is in an environment where more than three languages are used everyday to communicate. We asked doctors’ opinions and the ones who saw him said that he only needs help in improving his communication skills so he can express himself properly--that what he has is called an expressive and receptive language delay.
But then he started school, and he does not play or run around with the other boys. He asks to eat ice for snacks at the same time everyday. He fixates on a toy or anything around him that catches his interest and plays with or stares at it studying it for a long time all alone, not wanting to be joined by anyone, screaming his heart out when someone disturbs him. He hates noise with a vengeance; he would cover his ears with his hands when he hears different noises like the normal talking and shouting from his classmates. He screams nonstop where other kids would cry or fight. You call his name and he does not turn to you not even to give an indication that he heard you. When he accidentally gets hurt, he would bang his head on to the cement floor or the wall for a second time. With him, every pain has to be in pairs. He is more interested in how the wheels of a toy train work than letting the toy train take a run around its rails. He would open a door, enter, lock, open it again, come out and do the same thing over and over again until you sit him down, hold his little face in your hands, look him in the eye and tell him slowly to stop.
Last Saturday, we went in for another developmental evaluation, and sure enough he was diagnosed with ASD. Every parent believes their children to be special, but I bet no one wants them to be as special as this. I have been reading a lot of articles and forums regarding autism and learning disabilities and so I had my suspicions even before Xami reached two, but I guess I did not want to accept that this precious gift given to me five years ago will need special help with his special needs, and learning challenges, and peculiarities. I was advised by the doctor to schedule him for speech therapy three times a week, and also get him to occupational therapy sessions to help him reach the milestones he should be reaching and teach him the skills he needs to live a normal life, and also that he needs to be enrolled in a SPEd school to make sure he is learning what a boy his age should be learning.
After we got home from the doctor’s office, I went straight to the net and read as much as I could, and watched videos about the condition. Some said ASD (Autism Spectrum Disorder) is sort of an umbrella or a rainbow where no two individuals fall on the same point within the spectrum but the point is that my son is somewhere in that spectrum. Cognitively, his brain is functioning more than it should as a five year old, as evidenced by his eye for details of colors, lines, and curves, shapes and figures. But his language and social skills are that of a 2 year old. I was encouraged when I saw videos of autistic adults speaking publicly at organized events to advocate for themselves and the generation of autistic children coming after them. Apparently, 1 in 68 children in the US is autistic. I do not have the statistics here in the Philippines, because sadly, there is not much program for children or adults like Xami in the public health care and educational system in the country. There is one website called autismpinoy but the latest update on their homepage dates as far back as 2013. I have also learned that in the whole province, there is only one trained speech therapist and there is only one school in town that provides special education for children with learning disabilities, pardon me for my im-(non-un-)political-correctness. In the neighbouring city of Baguio, there are two places where one may go to get special help for speech development in children who has language delays and learning disabilities, at least that is what I gathered from the web.
Now we are faced with a big decision to make to be able to give Xami the maximum help we can get for him and there are lots of factors to consider and questions to answer. Should we relocate to the city for a little while in order to enrol him in a SPED school and get him the regular speech and occupational therapy that he needs to be able to catch up in his development? I don’t know. Yet. But in this, I want to have a life of faith personified.
