How my autistic son taught me fatherhood

How my autistic son taught me fatherhood
MANO-A-MANO By Adel Tamano (The Philippine Star) Updated June 20, 2010 12:00 AM


Most Sundays, you will see me and my family at the Power Plant Mall in Rockwell — we’re the family hanging out by the fountain outside Zara. That’s my eldest son’s favorite spot. Santi has autism and like a lot of children with his condition, he is mesmerized by the running water.

Today we celebrate fatherhood and fathers all over the world are showered with gifts and taken to their favorite restaurants for being wonderful dads. I certainly appreciate all of these gestures but as the world says “thank you” to fathers, I will give thanks to my son for I believe that whatever I am as a father — if I have been a good one at all — can be attributed to Santi. Every day he teaches me the real meaning of fatherhood.

If you see my son, you’ll think he’s like any normal seven-year-old. But really, he isn’t. To begin with, he will not converse with you; sometimes he will jump around or flap his arms for no apparent reason; he will likely throw a tantrum if a schedule or pattern he’s used to is not followed; he gets agitated when we take detours to the mall. However, despite his condition, he is happy and healthy. He is thriving in school, not only because of an excellent teaching and caring environment, but also due to the fact that because he has a great team of therapists, doctors, teachers, yayas, and professionals supporting him.

It is because he isn’t a typical child that I have been forced to find the real meaning of fatherhood. I am like most men. I had typical father-and-son dreams of teaching Santi basketball (or in my case, volleyball), having him attend my alma mater, even just sharing jokes (eventually teaching him my favorite green ones when he is old enough), and watching movies together. But all these dreams were shattered when we found out that Santi had autism. An autistic child relates very differently from a typical child. So you throw all your preconceptions and expectations out the window. This means you will have to learn new skills and values in order to raise and live with an autistic child.

So on a mundane level, this means that when you eat out, you learn to put your preferences on hold, because Santi generally only eats fried chicken, which drastically limits the places you can go to (our thanks to all the restaurants that allow us to bring in Chicken McDo!) You learn how not to care if people are staring at you, sometimes even glaring at you, when your son is throwing a major tantrum in the middle of a mall. You learn how to give up a lot of personal luxuries in order to afford the therapies and treatments for your son. In the end, you learn patience, sacrifice, and acceptance. In short, you learn how to truly love your child; how to be a real father. This is not to say that fathers with typical children are not real fathers — I love and adore our other son, Mike — but the challenges, the frustrations, the worries are tenfold with Santi.

I have met fathers who feel differently about their autistic or special children — fathers who feel angry, ashamed, or embarrassed. They are surprised to hear our family talking candidly about Santi’s condition. They feel that their child is mostly a burden and they are weighed down by the challenges and costs of raising their child. Specialists refer to this as the Kubler-Ross stages of grief at having an autistic child — denial, anger, bargaining, depression and acceptance. We all deal with grief in our own ways and it is but natural to grieve, not so much at having an autistic child, but rather to grieve for the “normal child,” and the “normal” father-son relationship, that you will never have. Raising an autistic child is daunting and sometimes overwhelming. However, getting stuck at any of the stages prior to acceptance only hurts both the father and the child. Firstly, anger or depression will not change the fact that the child has autism. You cannot wish or fight the condition away. Secondly, while you will never have a typical father-son relationship, you can still have a fruitful and rich relationship with your child.

Santi has also strengthened my faith.

Another area in my life that has improved — and I believe this has made me a better father — is my faith. I don’t think that I would have been able to handle and accept his condition if it were not for my Islamic faith. One of my favorite verses from the Koran, the Muslim holy book, says that God does not put more burdens on a person than he can bear, so, by having Santi, I knew that I had what it took to be a father to my child and that I could face the challenges of his autism. In regard to the expense and costs, a particularly gruesome aspect of Islamic history was insightful for me: in pre-Islamic Arabia, families who had too many children would sometimes leave newborn babies, particularly female children, in the desert to perish. One of the humane innovations brought by Islam to Arabian society then was the prohibition of this atrocious practice. The Koran states “(k)ill not your children for fear of want: We shall provide sustenance for them as well as for you. Verily the killing of them is a great sin.” Of course, I would never even contemplate killing a child but the point is that God will provide for our children’s, particularly our autistic children’s, needs.

Finally, Santi is a joy to me. Fatherhood, should be, at its heart, a joyful experience. Last Christmas, in his school program, Santi danced with his class! To most parents that would be most ordinary, perhaps even a little boring, but for my wife and I, it was the best Christmas gift that we had ever received as a family. Seeing our son healthy, thriving and coping with school was an answer to our prayers and the happiness we felt at that moment more than made up for the years of personal sacrifice, expense, and worry that we had undergone as parents. I know that I, Weena, Santi and Mike have many more years of dealing with the challenges of autism but I’m actually looking forward to it. Santi has not only taught me to be a real father but he has also given us the ultimate blessing — he has made us into a true family