As a Matter of Fact, It’s a Matter of Money

If I have to be honest about one thing today, it has to be about money. I just paid the rent for our apartment unit today. It is relatively expensive in this city because it is accessible to almost everything, including St. Paul School of Ormoc where Gabby is attending his accelerated Grade 1 classes and sped classes and the Able Buddies OT clinic where he goes for his weekly group occupational therapy sessions.

We chose to relocate here because we needed to put him on accessible intervention programs two years ago. However, my husband had to pay a high price for it. And this is not a euphemism. Lots of money is involved here. Our decision to prioritize the progress of Gabby involved a trade-off. We had to give up our ‘financially better’ but ‘generally difficult’ life in my hometown so we can have a ‘financially difficult’ but ‘generally better’ life here. Am I making sense here? Here’s the sad truth. Special teachers, behaviorists, occupational therapists, speech therapists are all extremely expensive but they help Gabby and us, his family, live a better life.

Indeed, today’s economy is rough on families around the country, but there are some who are impacted more than others. Include our family in that list. Having a child with autism is an emotional, physical, and fiscal feat. As parents of Gabby, my husband and I have additional expenditures that have turned our middle-income family into a low-income family in a matter of months.

Let me enumerate the financial challenges that we have been living with our daily lives.

1. We are a single income family. Children with autism require around-the-clock care and stimulation. Though this can be done by a caregiver, I chose to quit my job and stay home to care for Gabby right after he was diagnosed. In a two-parent family such as ours, that means my husband who is an OFW-seaman must shoulder the burden of earning enough money to support our family and the extensive cost of care.
2. We have to spend for Gabby’s special school, therapy sessions, and regular school that are relatively expensive. That is a fact. Every month, sending Gabby to these intervention programs require us to shell roughly more than P10,000. His three times a week of sped classes cost P5,500. His weekly group occupational therapy sessions cost P2,000. His grade 1 tuition costs P2,000. His yaya, who we hired when I gave birth to my second baby, is also paid P2,500 per month. Other incidental costs include transportation and food (baon) expenses.
3. We need to spend for spend for Gabby’s special activities too.  These activities include special camps, swimming lessons, and social events such as Easter trick or treat parties and Halloween costume parties. However, these activities can be expensive. As I said before, gradual but constant exposure to these activities can enable Gabby to adapt to different social situations. We think they are imperative for the social development of our child.
4. We also pay for Gabby’s special materials. When Gabby started occupational and speech therapy sessions, we also bought materials more or less the same materials that he used during sessions so that we can do follow-though at home. We have a stability ball, a trampoline, board games, puzzles and other toys that functioned as therapy materials. These can be pricey especially if we don’t buy them wholesale or from a direct seller.
5. We lack health coverage for all the costs mentioned above.  Health insurance has not caught up with the need of the times. Unfortunately, in the Philippines, all health insurance plans exclude treatment for autism or outright refuse to cover behavioral-related therapy because it is considered “educational” rather than medical. By denying coverage, we are left to pay these treatment costs out-of-pocket.

Raising a child is already financially hard. Nevertheless, raising a child with special needs is much more financially difficult. I am not complaining though. Despite these challenges with money, I can say raising Gabby has been challenging but rewarding. We believe that God provides. He helped us master the art of getting by autism. After all, he does not give us what we cannot handle.

* This was our family portrait in July 2013.  

His 6th Neurodevelopmental Pediatrician Evaluation

The neurodevelopmental pediatrician of Gabby is Dra. Myra Altonaga. She is based in Cebu City but she comes here in Ormoc City every 6 months to conduct evaluation sessions on children with special needs. The special needs community in this city has been fortunate and blessed that she has been doing this for the past 2 years. With this set-up, we can save up a lot of money because her transportation, food and accommodation expenses would be equally divided by the number of children who are scheduled for evaluation sessions while she comes here. In 2010, we went to Cebu City to have Gabby evaluated by the same doctor. The 2-hour session could be pricey at P2500, plus we would still pay for the food, board and lodging and transportation expenses.

Today, Gabby was absent in his sped class so that we can go to his bi-yearly neuro-developmental assessment with his “Tita Doc Myra” in the Able Buddies OT Clinic. I opted to put him on a 2:00 pm schedule so that he can still rest from his regular morning classes for Grade 1. For me, proper timing is essential so that he will be cooperative to perform the given tasks.

In his confidential Summary of Neurodevelopmental Re-evaluation Report, these were noted by the doctor as her observations:

1. Gabby was compliant in the tasks but sometimes he went out of focus.
2. Although he was talkative and could already initiate simple conversation, he still has difficulty in logical or abstract reasoning.
3. Doctor was informed by Gabby’s occupational therapist, Teacher Charisse that he can initiate play with other kids, and apparently is performing excellently in his regular school.
4. Doctor was also informed by me that a little rigidity could still be noted especially that he has been really interested with reading the almanac, especially about the flags of different countries around the world.
5. Informal tests were done by the doctor. Gabby’s current level in Mathematics and Reading is at Grade 1. His current level in Reading Comprehension is at Grade 2.

In terms of his current neurodevelopmental abilities, they were measured by the doctor by letting Gabby perform tasks. Compared to his actual chronological age of 6 years and 4 months old,  these are his maturity ages in the following domains:

Gross Motor Skills – 6 years and 9 months old

Fine Motor Skills – 6 years and 5 months old

Receptive Language Skills - 6 years and 9 months old

Expressive Language Skills – 6 years and 2 months

Cognitive Skills – 7 years and 1 month old

Personal-Social Skills – 5 years and 4 months old

Adaptive Skills – 5 years and 5 months

  

Because of these results, Tita Doc Myra recommended the following:

1. Gabby will continue with his weekly occupational therapy group sessions to focus on social skills training, functional skills training and behavior modification therapy.
2. He will continue his sped classes of three times a week.
3. He must be re-enrolled in speech therapy sessions focusing on higher level of language processing. *Note: Gabby’s old speech therapist last year, who is based in Cebu City, got pregnant and she did not come back to Ormoc City after she gave birth. We will enroll him with an Ormoc-based speech pathologist once her schedule can accommodate Gabby.
4. He will continue mainstreaming in his Grade 1 classes.
5. He is encouraged to engage in sports and other non-academic activities so that he can be ‘one of the boys.’
6. Gabby’s yaya should only act as a guide in his self-care tasks so that he will not be lazy to perform them.

Over-all, I am very happy with my son’s progress. Although he is still delayed with his expressive language skills, personal-social skills and adaptive skills, I am proud of him and how far he has developed from his pre-diagnosis stage to his current state as a hybrid student now. The excel worksheet that I prepared to monitor his progress over the years show that he is progressing. He is doing his best. His dad and I are doing our best in parenting him.  And for me, that is enough. Someday, we will get to the point that we can say we have nurtured Gabby in such a way that he can reach his fullest potential. We are hopeful. J