Living with autism
The couple describes to us what it’s like to care for a special child. “The first time I brought him to therapy, Adel was still in Boston, kaya buti my mom was there. It was heartbreaking. He’s crying and begging for you to comfort him.” Discouraged by how much Santi seemed to be traumatized by this incident, they had second thoughts about continuing with the therapy, but Atty. Adel stood firm. “I think you need to allow your child go through difficult times if it’s good for them.”
At 8 years old, Santi is now in Grade 2 at the Integrated Center for the Young (ICY) in Heroes’ Hill, where 25% of the pupils in each class are kids with special needs. He has a dedicated shadow teacher in school. Every week, he has 4 hours of occupational therapy, 1 hour of speech therapy, 4 hours of swimming with the occupational therapist, 4 hours of SPED, and 4 hours of home program. It’s a rigid schedule because “if you let him on his own, he regresses.”
The Tamanos spend about P80 thousand per month on Santi’s special needs, including therapy (P60 thousand), medicines (Etofenamate at P200 per day), skilled house help and gluten-free food. “We’re lucky that somehow we are able to afford all the therapies, but knowing this, we also have to work very hard,” says Adel. “I cannot be irresponsible about making financial decisions. We have to give up certain things because a big part of my salary goes to Santi’s needs. Maybe that’s why wala din akong hobbies. Some of my friends have gun collections, yung iba, golf clubs, o kotseng magara, I don’t have any of those, because I know may paglalaanan kami, my money is for my children.”
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