Who takes care of those taking care of people in the autism spectrum?

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After Candy Pangilinan bravely showed a vulnerable moment with her son Quentin, many people realized just how difficult Candy's position was, taking care of a child who is on the autism spectrum.

Being a parent of a child in the autism spectrum means taking them to therapies and other intervention while securing their future and helping them be independent.

For Marissa Torres, being a mother to her 11-year-old son AJ, who is on the spectrum, is like being a combat soldier.

“The stress of a parent of an autistic child is the same as a combat soldier. Everyday, we struggle. We have PTSD, the stress level of an autism parent,” Torres told GMA News Online in an interview.

“It's not easy because even if you have financial aid, you still have emotional struggles within you. So, what I can say is that as a parent, our mental health and our well-being is also sacrificed." 

Kristyn Chua-Dela Cruz, a mom to her 5-year-old son Matthias who is in the spectrum, said it's also sacrificing personal things for your child.

“'Yung mga luxury of travel — wala na 'yun kasi may mas malaking o-okupa, which is 'yung therapy kasi hindi lang naman siya isang buwan kundi taon at hindi namin alam kung hanggang kailan. Siyempre, importante siya for him para maging independent siya in the future,” she said.

[The luxury of travel goes out the window because there is something more important, which is therapy. It's not a one-month thing because you don't know until when your child will need it. And that's more important because you want your child to become independent in the future.]

According to Torres, she's found strength among her fellow parents who have children on the autism spectrum, who uplift each other as they raise their children, as they also take care of their well-being.

“The most important thing here is, as a parent, you should keep on learning. You have to understand your case, and then you have to find help kasi you cannot do it alone,” the mom said.

“That's for real. Kailangan tayo may support group na malalapitan and then there should be acceptance within the family. Lahat dapat coordinated para isa lang 'yung approach ninyo,” she added.

Finding a Community

Having a child in the autism spectrum is financially draining. Torres found support through AJ’s grandmothers, who takes care of the child as Torres works doubly hard as a school directress to sustain the needs of their family.

“The first and foremost support for me — very strong support, is the family," she said. "Without the lolas talagang hindi kami makakagalaw. As parents, we have to work to sustain 'yung pamumuhay namin. So, the lolas are always there. They are the first support in our family."

And as she takes her son to his therapy sessions, Torres also found new friends in other parents with the same situation as hers. 

“The parents in the therapy center — as parents kasi magse-center hopping ka, you'll go to (occupational therapy) here, (speech therapy) here, and other therapies that you need. And then you meet people who are also in the same situation as yours some have been through,” Torres said.

“You get to learn from them, from their experiences. And then the mentors that I have met through my education. They are really a big help in my endeavors, the day-to-day struggles as parents and as teachers,” she added.

For Chua-Dela Cruz, forming the Facebook group, Autism PH, helped her and other parents in raising their children.

“I was really looking for a place to vent kasi hindi pa rin ganoon (kalawak) 'yung acceptance ko but then nabago 'yung perspective ko when I joined [the group] kasi nakita ko na mas marami pa palang magulang na lost din sa kanilang journey, 'di alam kung saan magsisimula, kulang din 'yung edukasyon,” the mother said.

[I was really looking for a place to vent because I was not very accepting of my situation but my perspective changed when I joined the group because I saw there were many others like me, parents who are equally lost in their journey, who don't know where to begin, who also lack education.] 

“Naging admin ako kasi I'm blessed that I have the luxury of time to read and access to information. But there are families na walang ganoong opportunity. So, roon ko sinimulan 'yung libreng webinar para sa mga magulang,” she added.

With the Facebook group, she gained more knowledge and strength from other families who are in the same situation as her.

“'Yung mga webinar na 'yun ay libre para kahit papaano mayroon silang magagawa sa bahay. Tumatakbo na siya for two years. Bukod sa online, mayroon na rin kaming mga face-to-face outreach programs, importante siya kasi, wala naman makakaintindi sa 'yo kundi isa ring magulang na dumadaan din sa certain situation,” Chua-Dela Cruz said.

“But siguro advice ko if you're going to look for a community, you go for a community that will uplift you. That will help you with your journey,” she added.

Taking Care of Their Well-Being

For Chua-Dela Cruz, it is important to know the dynamics of your family so you can allot time for yourself.

“Importanteng napag-uusapan 'yung dynamics niyo sa family. Kasi kaming mag-asawa mayroon na kaming 'me time' at least once a week, kahit isang oras na pwede kang lumabas,” the mother said.

“Kung kaya, kahit 15 minutes na huminga ka, sana magkaroon. 'Yun ang wish ko sa bawat magulang, magkaroon ka pa rin ng pahinga kahit papaano,” she added.

[It's important that you talk about your dynamics as a family. My husband and I, we have our weekly 'me time.' Even if it's only an hour that you can take for yourself. If you can take even just 15 minutes for yourself, do it. That's my wish for every parent: To have time to rest.] 

Torres stressed how your time for yourself is a way for you to regain your strength to carry on the work anew the next day.

“That's what we need to recover somehow. And of course, parents will have time to go on a date sometimes, without thinking. Kasi 'yun autism, forever na 'yan, nawawala kasi 'yung pagiging husband and wife minsan kasi lahat kayo pagod na pagod, even the siblings are going through the stress,” the mother said.

[That's what we need to recover somehow. And of course, for parents to find time to go on a date, without having to think. Because autism is forever, and you can sometimes forget your role as husband and wife because you are all be tired, even the siblings go through the stress.]

“It's actually a family journey. If you have one child with autism, isang buong pamilya ang may autism who goes through together in the journey,” she added.

Spending time with other parents of children on the autism spectrum also helps too, Chua-Torres said.

“Doon ka lang makakakita ng same journey na mas makakaintindi sa 'yo, sa mga pinagdadaanan mo. Alam mo, kahit naman nagbabasa ako, there are a lot of things na natutunan ko sa parents din,” the mother said.

“In our community, parang kami-kami 'yung nag-a-uplift sa isa't isa,” she added.

[That's where you will meet people in the same journey who will understand what you're going through. And even if you read and research, there are things that you will only learn from other parents. In our community, we really uplift each other.]

What the Government Can Do to Help

While there are efforts from the national government to help the families with members in the autism spectrum, Torres hopes for more training and seminars at the barangay level to educate them about autism.

“Sa atin naman dito sa Pilipinas, the awareness is really very low. And since we have the barangays and daycare, there's a daycare center in every barangay. Isa sa pinakamalaki nating kailangan na support is to educate parents and teachers. 

“And it all starts at the barangay level, in our daycare centers. If they'll be able to, for example, the deaf and have a very good training, if they can have that cascaded to all barangays and have the parents and the teachers be trained and educated I think it will be a very good start to empower and support parents and teachers in our journey with autism,” she added.

“Because a lot of parents do not even know what autism is. Though they are in the situation, they are not aware. That's our problem now. Education has to be empowered starting from early childhood.” 

She is also hoping to have more resource learning centers at the provincial level that can provide professional help to people on the autism spectrum.

“I believe the government is doing the resource learning center, they have started this, so hindi pa talaga na-cascade sa mga provinces. We're looking forward na maabot 'yung mga lugar na malalayo,” Torres said.

“Since, hindi tayo naaabot ng mga eskwelahan na nag-po-provide ng mga professionals, at least 'yung mga resource learning centers makaabot.”

Despite the challenges, Chua-Dela Cruz and Torres’ stories prove that raising their child in the autism spectrum towards independence is possible. — LA, GMA Integrated News