By: Euney Marie Mata Perez
I used to not share much about the challenges we faced as we raised our eldest son, Gino, who has autism, because I would rather share positive things, than negative ones; I also did not want to seek sympathy or pity. Occasionally though, I did share how we raised him to friends and others at social gatherings or when the opportunity called for it. However, to help younger parents who may be facing the same challenges and to inspire them, I thought it is about time I put in writing what we learned in raising Gino.
Gino, who is now 26, was diagnosed when he was just two years old. At that time, he did not speak even a single word, had very poor eye contact, had prolonged tantrums, and played with the same toys repeatedly. Since he was the eldest, we had no one to compare him with and thought he was a regular child. But my brother, who is a doctor, saw the alarming signs and eventually, convinced me to have Gino checked and diagnosed.
Gino was an easy case to diagnose, because he was a “classic”—he had and displayed almost all of the signs or symptoms of one in the autism spectrum. We couldn’t be in denial. It was devastating and daunting then.
However, after years of intervention, Gino has become such a lovable, soft-mannered and loving young man, with very good self-help skills. He has gone a very long way, and we are extremely proud of him.
He is now gainfully employed, in two jobs. Once a week, he works as a server at Walkie Talkie Coffee Shop in Dasmariñas, Cavite, and thrice a week he reports to the Alabang Office of APKI (Asia Primera Kimika, Inc.). He plays bowling, can publicly commute in certain areas, knows how to cook, and manages our household finances.
But what he is and has become today is a sum of so many factors.
In the overall, it requires acceptance, humility, tons of patience, focus, determination, and resources to raise a special child. I would thus like to share our learnings.
- Accept – We have to accept if our child has special needs. This is the first thing to do as parents, and the most difficult one, because we think these things will not happen to us. We start being incredulous, angry, lost and confused. However, in the end, we have to face the challenge, no matter how daunting. Accepting the situation is key because knowing the problem and understanding it is crucial in solving any problem. The parents’ denial of the problem is, for me, the greatest stumbling block to a child’s development. In denying, the parents will deprive the child of what he or she really needs—a proper intervention at the earliest possible time. As parents, we are the key to their development. Unfortunately, we can also be the greatest obstacles.
- Be humble – A child with special needs has special needs which have to be met and addressed by professionals and a good intervention program. As parents, we are not trained to handle special kids. No matter how good or successful we are in our fields of work, we are not experts when it comes to special children or their intervention. So, the key is to have a good team of professionals, to listen to them, and to try to learn as much. Although in the end, we, as parents, make the final decision on many matters, like the choice of school, frequency and mix of intervention, etc., we have to make said decisions in an informed and intelligent manner as much as practicable. We can do that when we know how to listen and recognize that we need help from the experts. That is humility.
- Provide resources – Do not scrimp on the intervention costs; go for the best therapists, the best team you can afford. Investing on a good team and a good program will be the best decision you can make, not just for your child, but also for his or her siblings. We sought the highly-recommended therapists, even if they were more expensive than others. We went to the best developmental pediatrician in the country, Dr. Alexis Reyes.. She played a very crucial role in leading us to the best therapists and in forming, as well as in implementing, Gino’s intervention program. We also hired a full time “shadow teacher”, who was a college graduate.
- Get a good support team and home program – Aside from a good team of professionals, make sure you have a good team at home. Do not leave your child with just the yaya, much more an untrained one. As mentioned, we hired a full-time college graduate who acted as Gino’s shadow teacher, went with him in all his therapy sessions, and repeated his sessions at home. His yaya was also trained by his therapists. We replicated at home what his therapists did in his therapy sessions. We had one of our bedrooms converted into a therapy room, where Gino and his shadow teacher, Teacher Jo, would spend hours to repeat his sessions. There were years when we had home programs, and his professional therapists from Shine Intervention Center would visit our house to check what we were doing at home. When our house was new, we placed gym equipment (trampoline, monkey bars and large swings) at our basement so his occupational therapy sessions could be replicated.
- Know the Program – Despite having a good team, do not leave to the therapists all that is needed to be done. Know what they are doing, know the program and collaborate with them closely.
- Handle Your Child – I was told early on that we, the parents, are the permanents in the team. The others are temporary—they will soon leave you. So, we have to be able to handle our children ourselves. I remembered that one time, I complained to Gino’s therapist that he seemed not to listen to me. Then, I was told bluntly that I was having authority issues: Mommy is to play with, teacher is to be followed. So, I took over—brought him out alone, without yaya, driver or teacher. for several instances– and established my authority over him.
- Expose Your Child – We never cloistered Gino. We brought him to parties, trips, malls, etc., and allowed him to go on campings and pursue his interests. He does bowling and bikes around the village. He also talks to neighbors and visits their home, etc. Thus, he is very popular among our neighbors. He has travelled with us locally and overseas. He has even taken a flight alone to the province. He was trained to commute with a tricycle inside BF homes. He has taken jeepneys, p2p buses and vans, and now can commute from his work to the house.
- Believe and dream, but be realistic – Autism has no cure, so Gino will always be in the spectrum, a fact we have to accept. He is not a savant, but he has skills and assets. He can never be like a regular kid, but he is doing well as one with autism. We did not push him to finish college anymore, although he finished high school in Create Learning Paths. He has taken TESDA courses on Microsoft word and excel. He has also taken a course on coffee brewing by UCC Coffee Academy and cooking in his therapy class in Candent. He was trained basic accounting, and thus, manages our house disbursements. He has done on-the-job trainings, and now is employed by APKI Philippines. He has also been trained as an alter server and serves our parish masses. However, he may never be as independent like a regular person. He will always have difficulty socially and in communicating verbally. He will still have difficulty in managing his stress, since his stress tolerance is low. Thus, we will have to continue to support him. In the end, we aim for him to have a meaningful, fulfilling and happy life—a simple life, but hopefully, a happy and contented one.
The impact of having a special child on one is enormous. It may be beyond one’s understanding, especially at the start. However, looking back, I realized that we were never left alone; that God took care of us, especially Gino; that we were guided; and that there were so many people, including dedicated therapists and doctors, who helped us along the way.
Having a special child is still a wonderful gift and blessing. As parents, we just have to do our best and face the challenge and reality. In the process, we enable our child to become the best person he or she can be. As a fringe benefit, we also become better persons ourselves and the best parents that we can be.
