A Message to the Village

We got used to people staring at our son. Many plied us with questions: What is a Cochlear Implant (CI)? How does it work? What makes it different from other hearing devices? At first I did not know how to react to their amusement at our explanations.

But some people were cruel, perhaps without meaning to. They would ask, “Bakit siya nabingi?" and I would zone out for a moment before I could summon the courage and courtesy to tell them what had happened six years ago. It was hard at first, but I became good at hiding my irritation.

My husband and I were tested to the limits several times before and, I must admit, we still get annoyed hearing the same questions all over again. I’m more open to speaking about my son's disabilities than my husband, though. 

But still, I would appreciate it if people come up to me without stupid or tactless questions or comments. If you are truly concerned about my son’s plight, perhaps what you may wish to ask is how you can help in raising him with his special needs. 

Here are some lessons I’ve learned along the way: 

1. Acceptance

Parents, we have to accept that not everyone can relate to what we are going through. We also need to understand that our immediate family and in-laws are completely clueless on what's going on in our lives---unless we are ready to tell them our struggles and they are willing to listen. If we don't feel like opening up, we can’t expect them to know how they can help us with our problems. 

After the denial/anger stage, when our tears have dried up, we had no other choice but to accept our "new everyday." It would be hard to plan actions if you haven't accepted your fate. Every child, despite his/her condition, is a blessing from God. Parents, I encourage you to stay focused and calm as you talk to each other so you can work as a team. 

Relatives and friends, you are now part of the "problem" whether you like it or not. Parents of kids with special needs have nobody else to turn to but you. They hope you will understand them. So please make time for them. Stop giving unsolicited advice. Stop blaming them. If you have no clue about the child's condition, do a little research to know/anticipate their needs so you may be able to help in any way you can. 

2. Stop Comparing

Special-needs parents will somehow envy other parents who have "normal" kids. That's not unusual. But don't let envy change the way you perceive things. Always look for the positive side of things. Be happy for the child. Be happy for the parents and the whole family. Remember, life isn't perfect. We all have problems to deal with. Life is not a competition but a continuous journey of helping each other.

Relatives and friends, stop comparing a child with special needs to other “normal” kids. Instead be proactive to ask the parents how you can help and teach your “normal” kid how to help them. 

In our situation, my son and his cousin of the same age couldn't understand each other. They fight over toys, food, almost anything, really. But since we practice both sign language and speaking, we taught his cousin basic sign language so they could communicate better. And to our surprise, our son follows the cousin's lead. No more fighting!

3. Practice Good Communication

As parents, we thought that the difficult part was listening to the different doctors dropping the bomb as they explain our son's disabilities in jargon. But the hardest part was when we explain it to relatives or friends who also do not understand, so we have to translate in simple terms. You have to take into consideration those sleepless nights, rife with physical, emotional, and mental exhaustion.

Sometimes the people around you are the ones causing you more heaviness in the heart instead of lightening it up a bit. I suggest you bring your family or in laws when you go to the doctor or therapist or audiologist. Let them be a part of your child's journey so you will not get tired of explaining. This will also give them the opportunity to ask questions directly to the professionals. Keep an open and honest communication with all of them, so they will know how to help you and your child.

Relatives and friends, be kind. If you cannot say anything nice to the parents, just shut up! Learn to listen with your heart and be mindful of your questions. Like you, the parents are completely clueless on what lies ahead. They are worried, cranky, and hurt.

I always chance upon other parents who are still struggling and it amazes me that every time we compare notes, we always end up realizing that sometimes our immediate circles were the ones adding up to our burdens instead of helping us! 

Please find time to accompany the parents when they meet the professionals. Do not be afraid to tell the professionals that you do not understand the terminology they are saying; that way, they can use simple terms. Now is the time to ask them hard questions!

4. Create Your Own Support Group

Parents, you cannot do this alone. You need a team. A good team of family members, relatives, and friends. As they say, it takes a village to raise a child. But in our situation, it will probably take a city or the entire nation to raise a child with special needs.

Identify the people within your circle who are willing to help. Do not chase after those who will only give you more things to worry about. You already have a ton on your plate. Be a good leader and an advocate. Count your blessings, literally! This is how you can look for that damn "silver lining." 

Relatives and friends, clearly, you are the village. Please make time to do good. Yes, everyone is busy. You have work, they have work. But now is the time when these parents need you the most. 

Always ask them how you can help. If they need something you don't have, like money or financial assistance, find someone who can, or help them raise funds! If they don't know the answer to a question, help them find the answers. If you see the parent practicing the therapy assignments at home, follow their lead so you are all in tune to the child's goal. Be proactive! 

If you still cannot do any of those, then just be a good listener. Sometimes, parents just need a good shoulder to cry on. 

Anyway, I am just sharing all these based on some of our experiences and a few stories of other struggling parents my husband and I met. I think it is God's sign, telling us that WE ARE NOT ALONE... God will not let you struggle on your own. He is leading you to good people who can help you. Sometimes the answers you are looking for are just within reach, you just need to keep calm and trust GOD!