No way to go but up! (Inigo's Story)
To read the first part of Mommy Thessa's story, click here.
To read the second installment, click here.
I was working while my baby was in the hospital. I was lucky to have my mom to look after him. I was able to drop by the hospital during my lunch break to see if he was doing fine. The procedure took 7-8 hours as the doctor explained that they had a hard time inserting the rod into his crooked cochlea. I was shaking while waiting outside the recovery room. I couldn’t even concentrate in the office. Inigo was actually with my mom from start to finish. It was a successful implantation though!
When Inigo was wheeled in back to the room, he was so groggy and vomited several times. I was not used to seeing him sad. My heart was torn to pieces seeing him in pain and yet he can still manage to smile. My mom fed him small amounts of gelatin, milk and soup. He had a big bandage on his head and I was afraid to carry him.
A month after the operation, the ‘Switch On’ was scheduled. It was timely for Inigo’s 2nd birthday, June 14, 2014. We bought cake and balloons inside the clinic. I never felt so much excitement in my entire life! As soon as the cochlear implant was switched on, I noticed that he was looking at the direction of whoever was speaking inside the room. It was definitely the best day of my life!
The cochlear implant’s mapping took one year, until a program was finally found for his left ear. I remember him twitching when he hears the ‘ssss’ and ‘shh’ sound so the audiologist had to reprogram several times. After every map, the implant’s volume has to be slowly increased. My husband and I even got confused to which program number we should press next or at what volume should he be using.
But despite the hearing devices, he still couldn’t talk. He wears a hearing aid on the right ear and a cochlear implant to his left. We didn’t know how his brain processes the sound he hears. We also noticed a change in his behavior. His tantrums were getting worse. The developmental pediatrician suggested we try basic sign language so he can better express himself.
His new speech therapist agreed, because the hand movement may help retain a word associated with it. His occupational therapist also had to incorporate feeding sessions during therapy as chewing and speaking goes together. We bought expensive chewy tubes to exercise his gums. But Inigo hated it! He prefers to gulp or swallow, so he easily chokes on the small pieces of food too.
Fortunately, the basic sign language worked! It was a collaborated plan that took almost 3 years in the making. Inigo can say the first syllable of a certain word. He can tell stories of where he went and what he did, although most in sign. He was able to master the basic colors both in word and in sign. Anything that he cannot say will be described in color.
I was worried that typical children may not like to play with him since they do not know sign language however, his cousin Isay, was interested to learn when I tried to teach her how to sign a few words. The intelligent little girl noticed that Inigo responded to her questions and follows her lead.
We went ahead to ask for a second opinion on his overall development and microcephaly was not ruled. The results however was lower compared to the first. At present, he is equivalent to a 2.6 year old child even though his current age is at 5 years old. Physical Therapy was recommended to address his cerebral palsy spastic deplagia. Special Education classes in small groups were also recommended. All these methods of education never came cheap. We were spending tremendous amounts yearly. I also couldn’t find a suitable nanny to take care of my son. Hence, my decision to quit the corporate world.
My mom and siblings convince me that it was now or never. I am the only one who can better help my son and they were right! Behavior issues can easily be addressed once a parent is present. There were also instances that other medical professionals disagree with ASL saying that the child will be confused with the method of communication as most normal people listen and speak. I keep asking myself, how come the disabled has to be the ones adjusting for the abled and not the other way around. The ‘disabled’ try their best to fit into this cruel world when in fact the ‘abled’ ones can make it easier for them.
Thanks to YouTube, I no longer have to enroll to Sign Language classes. I also bought a signing book called Signing Exact English. I try to learn as much as I can. Inigo’s first speech therapist disagreed with signing as he may be too dependent on it. But when we gave it a try, he was able to imitate and attempted to say either the first or last syllable of the word and we are very happy with his progress.
When I get asked about when will Inigo have a brother or sister, I quickly respond back and say, no. Not again! The possibility of having another child with disability is greater now. I will not risk another innocent human being be born with incomplete senses again. I will not deal with the same heartaches all over again. Life will never be fair as long as the world is not fully aware how people with disabilities survive daily. Inigo doesn’t need a sibling to play with or take care of him when I or my husband dies. It is a selfish reason for a parent to instill that task to a sibling. It is also a selfish reason to raise a child so he or she can take care of you when you grow old.
Thanks to a few support groups I joined in social media, I was able to connect and get tips on certain things I sometimes struggle with. I now know that I am not alone. I thought my life made a wrong turn. But it turned out to be a mission and a challenge now. There’s more people who are still unaware about the world of the deaf. The possibility of hearing with different devices gets expensive every year! Some are fortunate, some are not. We cannot rely on our government as well as other foundations here in the Philippines and abroad as for them, this case is not life threatening.
I wrote a 6 page story of son’s hearing journey and this isn’t the end. Yes, he can hear, but NO he cannot speak properly yet. My goal is not the same as other parents who wished their child to become doctors or lawyers. Expectations may lead to frustrations. For now, I am teaching him how to listen, good manners and be respectful to others. We are focusing him to learn the alphabet, count, read, write his name and address.
I used to be ashamed of my son’s disabilities and I realized that it was WRONG. Never be ashamed of your child. Speak out and share you experiences so you can help other families who are on the same boat or even worse. No matter what religion you belong, the core of these teachings is how you care about other people. Kindness is the heart of hearts. I learned that life is not a competition. It is a continuous journey of helping others.
I got used to people starring at my son. They always ask what happened to him? What’s he wearing? I can see their amazement every time I explain what a cochlear implant is. I sometimes get frustrated with his slow development, especially when I hear how other children speak very well. But every time I think about it and start feeling sad, I would compare his abilities before and now. I remind myself to stop focusing with all the negativity by being grateful with everything I have. I make it a point to say thank you from the moment I wake up and before I sleep at night. I think about the wonderful things that happened during the day. It helps to train my mind to THINK POSITIVE. So yes, there’s little progress and I need to be more patient.
I hope I have enlightened you in some way or another. I also hope that after you read this you can start thinking about how you can help children or people with different disabilities. May we all continue to be a BLESSING to others!
Indeed, when you've been so down and out, there is nowhere to go but up! We've read about Mommy Thessa's struggle and pain, and yet, we also celebrate with her through their triumphs and pray for the best for Inigo always.