A Cup of Rage

I’ve sworn off coffee since I got back from a short trip to China in January; now it seems I am back on it again. Most mornings, just throwing a packet of instant coffee on a cup of hot water is all I have time for as Alphonse keeps us on our toes from morning till night. I miss the art of making tea- from the gracious pinch of rusty leaves that colors the water a warm reddish brown, to the patient minutes waiting for the tea to steep and release its full flavor, to the small, short sips that fill your mouth and throat with warmth and comfort. I miss tea. I miss making it and drinking it. Then again, I miss everything about our lives before this nightmare happened.

Today, I was told by someone very dear to us that “we should do something about Alphonse or we will all go down (sic).” I know that that person, whom we love very, very much, means well and is probably only concerned about us and our future, but the remark cut me deeply. One, it implies that we are not doing all that is possible to get Alphonse well. Two, it suggests, albeit implicitly, that we are better off without our son, that the solution would be to throw Alphonse into some godforsaken institution where he is least likely to cause havoc to our lives. Think about it- if he had cancer, would you say the same to us? And third, it takes away our hope that Alphonse will ever get back to the way he was before.

True, we are stretched thinly as far as our resources are concerned. Every bit of income that comes in seems to go out just as fast with Alphonse’s medications, supplements, doctors, teachers, and nannies. We will need college tuition for Alex soon (his college plan, which was paid for by his grandparents when he was a small child, went kaput with the collapse of the pre-need educational company that held it). The house needs major repairs, even as we need to replace many broken furniture. But when you think long and hard about it, do we really have a choice?

In this country, where nothing is ever free and even the Magna Carta for Disabled Persons carries no real weight, we pull ourselves up by our bootstraps. There is simply no help for people with severe disabilities like Alphonse. There are no specialized hospitals to care for them, no residential planning, no vocational training or employment opportunities. Even economic discounts due my son (see Republic Act 9442, Chapter 8, Section 32, Subsections c,d,e-

(c) At least twenty percent (20%) discount for the purchase of medicines in all drugstores for the exclusive use or enjoyment of persons with disability;

(d) At least twenty percent (20%) discount on medical and dental services including diagnostic and laboratory fees such as, but not limited to, x-rays, computerized tomography scans and blood tests, in all government facilities, subject to guidelines to be issued by the Department of Health (DOH), in coordination with the Philippine Health Insurance Corporation (PHILHEALTH)

(e) At least twenty percent (20%) discount on medical and dental services including diagnostic and laboratory fees, and professional fees of attending doctors in all private hospitals and medical facilities, in accordance with the rules and regulations to be issued by the DOH, in coordination with the PHILHEALTH;

are largely ignored. Children like him are the cast outs of this society, to be shielded and cared for at home, till death. So when someone says, “You better do something,” I have to ask back, “And you think we are not? What more can you ask of us?”

I have always been my son’s greatest advocate. I fight for him, as well as for other children like him. My weapons are my words as I continue to write about autism in the hopes of educating readers on awareness and acceptance. In the past, I have written many times about celebrating the strengths and achievements of our children with autism. I have worked, without compensation, for the Autism Society Philippines, using my skills to help them promote and further their goals. And yet, these days, I find the society strangely quiet and impassive as I send out my appeals for help. What is there left for us?  Where do we go to from here?

It’s easy enough to talk about the uplifting stuff- the savants with their math skills or pitch perfect singing, the musicians with their intuitive oido, the children who have defied their diagnosis, the “recovered” ones. Why, even I love these kinds of stories; they never fail to bring a tear to my eye. But very few seem to want to know, much less, hear, about the difficulties our children from the lower end of the spectrum face.

The aggression.

The self-injurious behaviour.

The violence.

The anger that rages for hours, even in sleep.

The destructiveness.

This is the kind of autism no one wants to talk about. For all we continue to fight and believe in, we delude ourselves by ignoring that this is the reality of other families. Families like mine.

My family is not alone in this, and yet often times, that is how we are made to feel. So we do the best we can and do the hard work ourselves- researching, reading, working, redirecting, teaching, calming, struggling. So, please, please, please, just don’t tell us we are not doing enough or we are not doing it right. Unless you’re willing to come down and spend a few hours in our place- in our shoes- to do some real, hard work., then just tell us you’ll pray for us.

3 thoughts on “A Cup of Rage

  1. I am angry for you that there are no specialized hospitals for acute care. Even in America, with so much healthcare, I have friends struggling to find psychiatric beds. Psychiatry is difficult everywhere. Even here, I wouldn’t put my child in long-term care…only acute. Our long-term care is dicey at best.

    I’ve been thinking a lot about you and praying. My own best friend said to me once about my high-needs daughter, “I think you should admit that you are disappointed”. I’m not sure I can ever forgive that statement. My child is my journey, she is my story, and she is a blessing, even on her worst days. I could never be disappointed…sad, exhausted sometimes, scared and anxious for her future…but never disappointed.

    I’m off to convince our insurance company to pay for Visual Therapy! Wish me luck. And my prayers to you as well…

    Indiana Lori

  2. I may not know exactly what it is to live your life with Alphonse but I am sending you cyber hugs to help ease what ever it is you are feeling,.. I agonize over my son’s tomm too hoping and praying I will be well enough to care for him — till he reaches his full potential — it is never easy some days we just dont want to do anything — there are days we still ask — do we do enough,.. I am praying you can find something to help you,.. something that will help you carry on,…

  3. Hello Kitty!

    I’m sorry I haven’t been in touch. As you know I have been poorly since Christmas, and I have been mostly stuck in bed this whole time. Though the doctors are now realising it’s a problem, and I’m finally going to be seeing a specialist this month.

    I’ve been reading through your blog posts, and they made me cry. I wish there was something I could do to help you and your family through this difficult time. My thoughts and prayers are with you, always.

    I’m working on an extra special lovey-dovey pamper package just for you. I hope I can send it out to you soon to help make you feel a little better.

    Lots of love,

    Your friend Panda
    x x x

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