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

Kuya Rey and Gabby at ‘Barberya ni Kap’

At 1 year old, his first haircut was monumental. Gabby sat on a specially designed, car-shaped kiddie barber’s chair and he did not move or fidget while the barber shaved off his baby hair. A few minutes later, he looked so cute with his semi-kalbo haircut.

Two years later, I was a highly-stressed mother who sat on an adult barber’s chair while letting a three-year old crying and fidgety Gabby sit still on my lap. We both wore the same barber’s cape on our necks. The cape was about to be torn because of Gabby’s constant resistance. He looked like he was feeling pain and fear at the same. Maybe the sensation from the shaver gave him pains on both his scalp and his ears. Maybe he was just afraid of the shaver, of the barber and of the barbershop altogether.

The autism diagnosis months later confirmed that Gabby had sensory issues. One of them was his auditory hypersensitivity. Certain sounds such as the hair shaver’s startled him and caused him to cover his ears in fear. When Gabby started attending sped classes, one of the simulation activities was haircutting. The sped teacher acted as the barber. While she was pretending to cut Gabby’s hair, she was also holding a real pair of scissors, and a real hair shaver. They both did that for a few sessions before Gabby and I ventured into a series of adaptation activities of going to a real barbershop which had a real barber who really was an expert in handling neurotypical kids and kids with special needs alike. We had to go to the barbershop daily for a week, then weekly for a month for pretend sessions. Finally, we went on a monthly basis for real sessions.

Earlier this morning, Gabby and I went about with our monthly routine of going to Barberya ni Kap, his ‘suki’ barbershop and letting his hair cut by Kuya Rey, his ‘suki’ barber for more than 2 years now. He greeted Kuya Rey, smiled at him, and told him that he will wait for his turn because Kuya Rey still had a customer. When Kuya Rey called him, he independently climbed up the adult barber’s chair and willingly let Kuya Rey put the barber’s cape on his neck. He told Kuya Rey his usual scripting, “I want semi-kalbo number 2, Kuya”. It meant that Kuya Rey will use the usual blade #2 on the hair shaver. He did not fidget and was not bothered by the sound of the hair shaver, the pair of scissors, the comb and the hair brush. He leisurely watched the show on TV. After a few minutes, he asked for a P50 bill from me and then he paid the cashier. He was done. His barber told me he can already ‘pass’ as a regular kid. I took that as a compliment. All of these actions may have been practiced several times already for the past two years, but they were ‘perfected’ by gradual but constant exposure. Desensitization may be ‘bloody’ at first but it can be rewarding in the end. 

Crossroad Puzzle: A Poem

Shall I follow the stream?

Shall I cross the sea?

Shall I aim for a dream?

Shall I let it be?

Shall it be neon lights

Which spell success?

Shall it flickering lamplight

That means happiness? 

Shall I follow the thunder 

During the storm? 

Shall I listen to the whisper

That gentle lips form? 

Shall I listen to my heartbeat? 

Shall I follow my head? 

Shall I take a backseat?

Shall I move forward instead?

*photos courtesy of Google Images*

Stage Mom to a Budding K-pop Dancer

We woke up early this morning. We showered and ate our breakfast early. We got ready early. Today was a big day. After four weeks of waiting and dance practicing, it was time to showcase Gabby’s and the rest of his grade one batch mates’ dancing skills!

Gabby was excited to dance to PSY’s Gentleman k-pop music mix while wearing his complete k-pop costume comprised of his white school foundation days shirt, a blue bowtie, a pair of colorful suspenders, a pair of khaki shorts, a pair of striped blue and white knee socks, a pair of blue sneakers and a pair of cool shades. Indeed, he looked like a real k-pop artist with his colorful get-up.

I was more excited than Gabby was. I prepared my smart phone. I had my video camera ready. I ensured that both had 100% battery. I wanted to take as many photos as I can. I assigned Gabby’s Yaya Eloisa to operate the video camera. That was the original plan. Capturing that precious moment of Gabby dancing was our top priority. In short, I was excited to be a stage mommy even for a few minutes.

While riding the tricycle on our way to Ormoc Superdome, I realized I left the event tickets. I panicked a bit. My gut feel told me it was okay to proceed without the tickets. Anyhow, I asked Yaya Eloisa to quickly grab them at home and to follow us to Superdome as fast as she can. Gabby and I were able to get inside the Superdome right away even without the tickets. The school guard acknowledged us and our familiar faces. We got inside the venue barely five minutes before the program promptly started. We made it on time. After all, Gabby and his batch mates were the first to present their K-pop dance.

There was a sudden change of plan. Without Yaya Eloisa who had the video camera with her, I was left alone to carry out “the mission”. I had to do the best I can with my good old reliable smart phone. After the Opening Prayer and Pambasang Awit, I hastily found my way in a myriad of parents who were as excited as I was. I ensured I was in the best spot to take a video using my smart phone. Gabby was a tall child and he was positioned in one of the back rows. That spot was at the back of the principal, and in front of the stage.

When the program host called the Grade One batch to perform onstage, I wanted to shout like a stage director, but softly whispered instead, “Lights, camera, action!”

While Gabby was dancing, I did not only sit back, relax and enjoy. I took a 5-minute video not only for myself but also for my husband who is an OFW-seafarer. I also noticed that he was dancing better than his past three performances in school. His movements were more precise now. His steps were memorized better now. For somebody who has autism and has been having an issue of being clumsy, I realized his gross motor skills were improved now than before.

On that very moment, I softly and quietly cried. No, they were not sad tears. They were tears of joy. They were tears of pride. They were tears of gratitude.

Gabby will always be number one source of pride, joy and gratitude. No matter how many times Gabby would dance onstage, whether it was hip-hop, k-pop and perhaps jazz in the future, I would still cry happy tears and I would still say a silent prayer of thanksgiving to God for that exact milestone.

I did not mind that Gabby and I were almost late. I did not mind that Yaya Eloisa took a video from afar because she arrived late. I did not mind that we had a change of plan. I did not mind that I was a “Stage Mom” even for a few minutes. After all, ‘the mission’ was still fulfilled. I captured the precious memory with not only my phone, but also with my heart.  

Twinkle, Twinkle Yellow Paper Star

The reward system works on Gabby. Getting a paper star from the teacher or getting high grades during exams is a big deal for him. It means he will surely get a present from me, or his dad. It can be his favorite food which is Jollibee burger steak. It can be an additional 30 minutes of play time outside the house. It can be an additional 30 minutes of PSP or tablet playing.

My usual question when he comes home from school will be, “Where’s your star?” His usual answer will be while pointing to his hand, “It is stamped here, Mommy.” Then he will tell me what he did to deserve the star.

If he does not have star stamped on his hand sometimes, his usual but funny answer will be, “The star is up in the sky.” :p

Today was different. My son went home with a yellow paper star posted on the chest area of his school uniform. This is rare because only the exceptional student for the day would wear a colored star on his/her chest proudly. Our conversation went this way:

Gabby: “Look, Mommy! I have a yellow paper star!”

Me: “Wow, that’s great! Why did you receive this star?”

Gabby: (He just smiled widely from ear to ear and did not answer me.)

Me: “What did you do to get the star from your teacher?”

Gabby: “Oh, I am Best in Spelling!”

Me: “Wow, good job Gabby! I am proud of you.”

Gabby: “I am proud of me too. Thanks mom!”

Because of this achievement, I did not only give my son an additional 30 minutes of playing in his Android tablet. I also downloaded a new educational game for him. It’s Flow Free. He was so happy!

I have learned three things today.

Firstly, I should give more learning opportunities for Gabby in Reading and Language, especially Spelling, because he excels in these subjects.  

Furthermore, paraphrasing a “why” question into a “what” question will still get the same answer from my son.

Lastly, I am too blessed to be stressed. I should take Gabby as an example. He never complains after countless times of practicing for their dance. He even got a rewards for being Best in Spelling today.

A Day in the Life of a Hybrid Student

Gabby’s typical week is broken down into four types of days. Firstly, Monday, Tuesday and Wednesday are busy school days. Secondly, Thursday and Wednesday are relaxed school days. Lastly, Saturday and Sundays are relaxed weekends.

Because of his autism, and because he has been mainstreamed already, my husband and I call our son a ‘hybrid student”. And yes, he can be busy as a bee!  His typical routine every Monday to Wednesday consists of structured activities that cater to his special needs. He has accelerated grade one classes in the morning and special education classes in the afternoon. He spends 4.5 hours as a mainstreamed elementary student, and 2 hours as a sped student. Both are held on the same school, St. Paul School of Ormoc Foundation, Inc. Gabby only rests for lunch and his short afternoon nap in between classes. I emphasize rest time on his posted schedule board at home because he needs enough downtime, especially since he has childhood asthma, too.

Because of their upcoming school foundation days, his grade one class has been allotting one-hour sessions for their dance presentation practices. They were supposed to represent South Korea. Because it was something new for him, he has been excited as a budding k-pop dancer for the past three weeks. For a creature of habit such as my son, I take pride on the fact that having these dance practices is a welcomed change for him. Nevertheless, the physical stress of constant practicing has taken its toll on him. He caught the cough and colds last week. Unfortunately, he also had an asthma attack, and was down with a fever last Friday.

I can say that today was different because I visited him in the school program area. I wanted to make sure he was not moving so much because that meant more coughing at night. Because it was extremely hot, I wanted to make sure he drank his water and changed to his extra shirt. I expected these to happen because I included them in his written rules in school. Because my visit in school was unexpected, it changed his behavior a bit. He was really excited and became more hyperactive. He asked me to help him changed his shirt, and open his water bottle. These are things he can do for himself.

What I learned today was I should tell him if I will visit him in school. No more surprise school visits! I should know better. Children with autism thrive in routine. If ever there are changes in routine, they should be told in advance. And Gabby is not an exception to this rule for mommy.