Three weeks ago, I was invited to be part of a seven-member panel of parents for a forum on raising children with autism. Organized and sponsored by Kaakibat ng Autism Society Philippines Multi-purpose Cooperative (KASPI-MPC), the forum was spearheaded by its hardworking President, Ms. Josephine Palomares, and was open to both members and nonmembers of the cooperative. Ms. Mayang Pascual facilitated the discussion and helped us get comfortable with the exchange and sharing. I was joined by one father and six mothers; our children’s ages range from 10 to 49. Each of us had at least one child in the spectrum.
I am grateful to Jo and Mayang for allowing me to share parts of Alphonse’s journey with the audience. Our story has often elicited sympathy, if not outright pity, from those who have never met Alphonse. Sure, our life is filled with meltdowns, with aggression and self-injury, with daily challenges that continue to confound us to this day, but Alphonse’s story is also a story of hope and perseverance amid a mountain of difficulties. It is a story of grit and love. And while it is important to hear those not-so-rosy parts to give people a “real” view of what autism in the far end of the spectrum is, it is equally important to recognize Alphonse as one who struggles bravely to master himself and his environment resolutely.
(Photo credit: KASPI-MPC)
We were asked to prepare a short introduction of our children for the audience. We were also given a shortlist of questions to help us prepare for the question-and-answer style of the forum. Below is the introduction I wrote, and some of the answers to the questions I was asked. It is my hope that parents who read this find encouragement and recognize that their love and acceptance can open up their child’s world.
Alphonse is exactly 23 years and 3 months old today, and yet, for all the years he has lived, he remains very much a child in interests and behavior. He loves Disney musicals, Ava and Dave, and Princess Sofia. He is afraid of the dark, of fire, and of spiders. On hot days such as this, you can almost always find him playing with a large basin and a hose. He jumps in his big trampoline when he feels like it or paces around the house, but you’d most often find him in the garage, sitting in his plastic patio chair, blowing endless bubbles.
“Blues brothers cool!”
Alphonse lives a solitary life with his parents and brother. He has no playmates or friends. He hardly goes out because crowds and noises overwhelm him. The closest person to a friend he has is his older brother. Together, they hang out in the schoolhouse aka playroom aka boys’ pad, Kuya playing with his consoles while Alphonse watches or blows bubbles beside him. Despite this, he is a generally happy fellow, sweet and lovable. He loves to sit on his dad’s lap. He helps his mom adjust her glasses when it falls off her nose. And he follows Kuya everywhere, even to the toilet, where he sits by the door and patiently waits.
“Aarrr, I am cutie,” says pirate Alphonse, with his hook nose and nasty snarl. Argh!
To many, Alphonse may seem to live a limited life, holed up within the four walls of our home. The happiness Alphonse shows, however, proves that he is exactly where he needs to be, doing exactly what he wants to. He is at peace, and, as a result, so are we.
Q: When you found out that your child has autism, How did you feel and what did you do to deal with the situation? Did you have a denial phase?
A: Alphonse was diagnosed at 18 months of age, a few months after we began to notice that he was no longer talking. I think the period between recognition and diagnosis was my denial phase. Back then, there were days when Alphonse seemed connected to us, making acceptance difficult, if not impossible. I dealt with the denial by burrowing myself in information, trying to convince myself that what we were seeing had some other possible explanation, something other than autism. When the developmental pediatrician gave us the diagnosis in no uncertain terms, denial was no longer possible. What came next was a period of grief and guilt, of wondering how and what I could have done to change the outcome of things.
Q: What challenges did you face or are currently facing now at this particular stage?
A: Alphonse is 23 and is a young adult. Were he neurotypical, he would have graduated from college by now, be employed, perhaps even have a girlfriend. Today, he is a man-child, someone whose interests are limited still to childish pursuits, and yet he is physically and physiologically a full grown adult male. The greatest challenge we face these days is trying to reconcile his physical strength to his cognitive abilities. The disparity is so great that it has caused our family difficulties, especially during his periods of stress.
Q: What were the kinds of interventions you employed and what were the most effective? Did you undergo any difficulty engaging those services?
A: A few days right after diagnosis, Alphonse went to school for early intervention. We did the usual- sped, speech, occupational therapy. As he grew older, we added additional services such as play and aqua therapy. We changed and supplemented his diet. His behavior started to deteriorate when he was four, causing concern and reluctance in some institutions to allow him enrolment. For many years, Alphonse could not be accommodated in group therapies and received one-on-one intervention. When he was nine, we made the decision to home school him. That, I think, has given us a better outcome, albeit it has not been a perfect one.
For us, ABA was the most effective way by which Alphonse learned. Today, however, because he is slowly manifesting a greater desire to participate in relationships, I feel that the Son-Rise program is also helping us make headway in acquiring his full trust.
Q: What were the big & little victories of your child and what were the personal breakthroughs that you had or are presently having?
A: No one knew Alphonse could read. We never even tried to teach him because we got stuck in the alphabet. Whenever teachers would try to read him books, Alphonse would grab the books and rip them to shreds. We noticed, however, that whenever we would read aloud to his big brother, Alphonse never left the room. This was the time Harry Potter was really big and my eldest son was so engrossed in it. On a whim, we decided to ask Alphonse questions about the book and give him choices written in paper. He gave us the correct answer each time.
I wish I could tell you that this was the magic bullet that solved all our challenges. Alphonse’s difficulties are so severe that moments such are these are few and far-in-between. Yet each time he looks at us, comes to us for a request, asks us of anything, that I feel is already a breakthrough because it goes completely against isolation and everything his autism is.
Q: How did having a child with autism change you & your family?
A: I have to admit, Alphonse was and is the center of our world. I wish I could undo that, for my eldest son’s sake, but that is done and nothing can change that anymore. Perhaps that’s one of the few things I would want to change- to not be so caught up in autism that everything else in our lives became secondary, sometimes even our own personal needs and desires.
The best thing to come out of my son’s autism is that our family has become stronger and more united. I’m sure a lot of families can identify with that but our son’s difficulties have taught us that we are stronger than we think we are, that there is nothing that can bend or bow us as long as we love each other.
Q: What are your aspirations for your child and how do you plan on making that happen?
A: I am still working on giving Alphonse his voice, so no matter how old he is, we have not stopped his education. As he grows older, I have learned to modify my expectations and not set his value based on what he can do or not do. In the end, I just want him to be happy. To know that he is always loved so he need not hurt others. To find peace in his body and mind so he will no longer hurt himself.
My grateful thanks again to KASPI-MPC, and to all the other parents who shared their experiences with us. I learned a lot from all of them; their willingness to teach and share what they have learned in their own journeys is a gift to those who follow in their footsteps. To Max, Doris, Imee, Ma’am Emma, Dr. Lirio, Ma’am Carmel, and to Jo and Mayang, God bless you all!