Living With Autism On A Budget

By: Dang Koe, ASP Chair Emeritus

MANILA, Philippines — One percent of the world population has autism, according to a scientific consensus reported last year by Autism Speaks, one of the world’s largest autism science and advocacy organizations.

In the Philippines, that translates to an almost one million Filipinos with autism. It is also estimated that only 10 percent of this affected population have been properly diagnosed and only five percent are receiving proper interventions.

The situation is because we do not have enough professionals (there are less than 50 developmental pediatricians in the country), or special education teachers, speech and occupational therapists leave for greener pastures. Schools and centers are concentrated in the cities; and professional diagnoses, assessments and interventions are expensive.

This is why for the 12th National Autism Conference come April 28-29, Autism Society Philippines will put “Living with Autism – Towards Family-Centered Intervention” to empower more families to really take matters in their own hands to craft the future of our children.

Our Angel Talker this week knows what it takes to raise and educate a child with autism on a very limited budget. In fact, Elizabeth Udquin has to do it on double dosage — both of her two children have autism. Mommy Beth not only rise from the double challenge, she even serves other families as president of ASP’s UP CAMP Manila Chapter.

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Not One But Two
Cholo, my first born, was diagnosed with autism when he was two years old. I did not have any idea about autism then, except for the phrase may sariling mundo.” While other families tend to get second opinions, seeing a second doctor was out of the question for me. Diagnosis by developmental pediatricians is expensive, ranging from Php1,500 up to Php 3,000 per assessment session.

I was still in the process of grieving about Cholo’s condition when Tristan, our second son, started manifesting signs and symptoms of autism. After confirming my fears about Tristan, our doctor told me “you already know what to do; just do the same thing you did for your first born”. Some comfort.

I went through severe depression; yes, not just once but twice. I decided to join Autism Society Philippines activities, starting with family support group meetings. I found out that we are not the only family who has two children with autism. I continuously attended and enjoyed these meetings which serve as a free, yes free, psychological therapy session for me. And in due time, I was healed emotionally. Meeting fellow parents who are going through the same experience as I have really helped me a lot.

Sariling Kayod
Taking care of two children with autism can be so draining, emotionally and physically. They are both hyperactive. I realized I must do something about my problem instead of just complaining about it.

I did part time job and selling different items to earn extra money. After a year, I had enough money to put up a “mini clinic” at home. I bought a trampoline, a slide, a vestibular ball, and improvised ball pool using Cholo’s old playpen. I also bought some table top activities (e.g., jigsaw puzzle, shape sorter, coin bank, etc.). I replicated at home whatever I see in different therapy centers. This “mini clinic” keeps my two boys busy playing, which allows me to rest — I would just lie down across the door to ensure the two boys stay inside their “mini clinic.” When I see them starting to get tired, I then give them table top activities taught by the professionals — occupational therapists, speech pathologists, and SpEd teachers. I also learned so much from my fellow parents during ASP’s family support group meetings and from attending ASP’s monthly seminars.

Wais si Misis
When Cholo and Tristan learned how to pIay computer games, they would spend two to three hours playing in their grandmother’s computer shop. I decided to come up with a more worthwhile activity that will also bring us extra income — selling. I changed their daily routines. After eating breakfast, we push a cart containing biscuits to sell to our neighbors and relatives.

Udquin brothers selling biscuits and crackers to the resident

Buyers who did not know us got interested seeing how strangely hyperactive my two boys are — they would tirelessly run back and forth as we peddle our goods. Straightforward, I would tell them that my boys are special children. Then conversation about what autism would take place. I thought that in a way, I am contributing to our autism awareness campaign! Now these buyers even look forward to talking to my children every time we ply our selling route.

After the rolling store came a stationary mini-store. We decided to embark on this “business” the day we observed Cholo imitating a sari-sari store tindero. He arranged on our window pane different containers (glasses, bowls, saucers and cups) and placed biscuits and crackers in them. He role-played selling the items to us and we went along pretending to buy from him. We gave him a peso per item, and made him practice giving change.

My husband and I knew we could help him enhance this new interest by providing him a mini-store. The following day, Cholo and I went to the talipapa near our house and we bought a few items based on his preference. We arranged the items just like in the sari-sari stores. Cholo called out to buyers, while Tristan helped him collect payments. Passersby got amazed by the two young businessmen, they joined the role-play and really bought from our mini-store! The brothers earned 31 pesos that day, and Cholo named his first branch “Jose Store.”

Kalakal sa Basura
When we founded ASP chapter in UP CAMP Manila, we badly needed funding, especially since most of our members are economically-challenged, some could not even spare the minimal membership fees.

I suggested we raise funds through the “zero basura” business which involves segregating garbage, packing, and selling them.

Cholo and Tristan

Our chapter’s secretary, Jeanette Rodriguez, suggested that we collaborate with UP CAMP (University of the Philippines, College of Allied Medical Profession). Kristopher Mendoza, head of CTS (Center for Training Services) agreed and supported the project.

After one year, we made enough money to subsidize the membership renewals of 10 members. For this subsidy, these members are committed to support the project t by bringing things that can be sold (e.g., compact discs, newspapers, plastic bottles, plastic cups, spoon and fork, etc).

Through selling garbage, I was able to mingle with a lot of people, especially indigent children. For these children, their ‘kalakal’ means they can buy food for them to survive. It is their means of living. For us in our chapter, we are doing this to help subsidize membership fees of those who want to join the chapter, especially those who are poor. The Lord provides, the project is still going strong to this date.

Inglisero sa Tondo
Did you know that in our country, English is the medium of language in therapy centers and special schools? Could it be because only the rich, who are mostly English-speaking, can afford these interventions? And so my two children get English instructions from their wonderful therapists and SpEd teachers (our family thank UP CAMP for accommodating us). Of course their mother also speaks in English with them.

But did you also know that in areas like Tondo, “Ingliseros” are ridiculed? “Arte lang ‘yan,” some would say. But I have learned to ignore these remarks. If speaking in English will help me meet my objective of maximizing the potentials of my children, then I will continue being an Inglisera with my boys.

Simpleng Saya
Four years after diagnosis, Cholo can now ask questions, understand stories and relate them. Tristan likes to imitate Cholo. They are quick to report the other one’s misbehavior. Just like regular boys, they would fight about food, drinks, and toys. And I love being the referee during these fights!

Cholo and Tristan can both follow instructions now, like sweeping the floor, throwing away the garbage, mopping the floor, packing away toys, buying things in the store. Best of all, Cholo is already a big help to me in doing household chores like cleaning the dishes and packing away clean plates. He can wash small clothes and can bring the hamper out for hanging clothes. Both can now perform activities of daily living independently — like eating, bathing, brushing, and putting on clothes.

In school, both of them are doing the pre-academics. They enjoy doing activities with other members of the family as well. And yes, some of our neighbors are now getting used to talking to them… in English.

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Mark on your calendars: April 28-29 is ASP’s 12th National and 2nd Southeast Asian Conference on Autism to be held in Crowne Plaza Hotel, besides Robinsons Galleria. World renowned autism self-advocate Dr Temple Grandin will be one of the guest speakers, via internet. For more details, please email autismphils@gmail.com.

Dang U. Koe is the chairman emeritus of Autism Society Philippines (a not-for-profit family support organization with 57 chapters nationwide, and almost 7,000 family and professional members who are working together to create an environment that helps persons with autism spectrum disorder to become, to the best of their potentials, self-reliant, independent, productive and socially accepted members of society. She is a sought-after seminar and conference speaker on autism. Her 17-year old son Gio, diagnosed with autism, propels her to be a passionate autism advocate.

Uploaded with permission

Acknowledgement: Manila Bulletin
Living with Autism on a Budget