Pain

21 Feb

We were in a middle of a tantrum Sunday afternoon when the doorbell rang. Alphonse was hanging to me by my hair, both hands tangled in the mess of my French braid, which he was forcibly removing from my scalp. He had already bitten me once on the head that day, catching hair and some skin in the process. The doorbell rang again and the nannies froze, unsure of what to do next. As we held on to each other like a human link of hair and hands, the doorbell rang repeatedly. One of the nannies ran hurriedly to answer the door. She came back with a letter in her hand.

“Ate, it’s for you. LBC delivery,” she whispered quietly.

“Hide it in the drawer first. I’ll read it later,” I said, still trying to release myself from Alphonse’s clutches. Finally, after being held back by his nannies, his fingers were pried off my head. Looking at his reddened fingers, he shrugged as if nothing happened and ran off.

Later that day, he would attack me and his nannies repeatedly, pulling our hair and wrenching our scalps in different directions. In the most vicious one, angry at not being able to ride the car with his dad again and again, he pulled me by my hair when my back was turned to him. He grabbed me by the tail end of my braid and slammed me, back first, to the ground with such force I heard my neck creak and snap in protest. I could not immediately stand up as nausea and faintness threatened to overwhelm me. When I finally found my bearings, my arms and hands were weak and tingling with painful bursts of electric currents running through them. It took almost five hours for the pain to subside. My hands are still tingling this evening and even just a light touch elicits extreme pain.

We’ve tried to approach this rationally but we still cannot find an antecedent or trigger to his vicious behaviours. We stay constantly vigilant but no amount of alertness could foretell the violence of his next attack. And he is learning too, modifying his attacks by demanding that we remove the bandannas that served as our flimsy protection and unravelling braids that prevented him from getting a handful of our hair. Whenever we protested or insisted on keeping our bandannas on, he would come at us more. Just this afternoon, he threw all our bandannas and hair ties in the trash.

I knew weaning him off Risperidone and shifting him to a new drug would be tough but I had no idea that it would be hell. This is the worst he’s been in almost seven weeks of this relentless siege. There seems to be no way to get through to him; while he is clingy and looks for me, he hardly even recognizes me anymore when I speak to him. His eye contact is almost gone. There is always a faraway look in his eyes. He is suspicious. His obsessions are mounting. His compulsions are unstoppable. He has developed pica again, eating bits of trash- leaves, stones, dirt- that he picks up outside. He does not sit still outside the car. He paces relentlessly, touching corners and specific objects in a ritualistic manner. And as hard as days are, night offers no respite as he explodes over and over again, grabbing at anyone near him and pulling their hair, and kicking and biting anyone who intervenes.

This afternoon, after more violent assaults that seemed to come one after another without provocation, the nannies and I stopped trying to reason with him. We retreated to the safety of the schoolhouse while Alphonse was left outside to pace, scream, and vent his ire on something other than our heads. At that moment, as I looked at him through the security grills of the schoolhouse, I realized that we had finally become his hostages. I am afraid of him. We all are.  

And yet, we love him with an ache so deep that just the thought of his pain reduces us to tears.

It has become harder each day to get out of this vicious circle of violence. I have asked for help from so many people and yet with each turn, we have faced more dead ends. There seems to be no end in sight.

We are no longer able to protect ourselves from his fury. We bear with the indignities of being beaten and assaulted by someone we truly, deeply, madly love. Our life is a living hell. 

Alphonse, we love you so much. Come back to us, please.  

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7 Responses to “Pain”

  1. Indiana Lori February 22, 2011 at 3:37 am #

    Oh heavens, no. This is too much. Do you have inpatient facilities where he can safely transition between meds? He’s not only a danger to you, but he is a grave danger to himself. The US has short term hospitalizations for adolescents going through med changes because it can be so dangerous. I’m seriously worried for your safety and his. I have been for a while, but today, I must wish for you out loud. As always, my fervent prayers to you both. Love, Indiana Lori

  2. Lyra February 22, 2011 at 4:28 am #

    Oh Pinky. I can feel your pain. When he is calm, would you try wrapping him in a cloth like a burrito? A katsa is good. It might or might not help. But sometimes the sensation helps to keep them calm. Jessica used to bring me a towel to wrap around her and then I researched and ask her psychologist, apparently it does calm them. It may sound cruel, but it really calms them. Jessica prefer it tight.

    A dark quiet place also blocked out confusing sensors in their brain. Jessica’s classroom has a tentlike place in a corner and according to her teachers, the kids take turns in going there to “relax” so I improvised and made one at home. She goes there on her own if she wants her own “quiet” time. In regular kid, it’s more of “bahay bahayan” kind of place only, it should be dark and quiet.

  3. Stephanie Esguerra February 22, 2011 at 10:18 am #

    Hi Pinky, my managing editor stumbled upon a Manila Bulletin article on sensory-friendly movies . We would love to get your story on how your son Alphonse and other children with autism found the experience. We’d really appreciate it if we could schedule an interview with you. Please do let us know if you’re interested. Thank you and best regards.

    • TJ February 28, 2011 at 6:55 pm #

      Stephanie, you’ve read the post and I hope you understood what is happening. Do you think it’s a good idea to ask even for interview right now? I don’t.

  4. S February 23, 2011 at 2:37 am #

    I agree with Indiana Lori: this is too much. You need a huge amount of support through this medication transition phase, and just how long is it supposed to last anyway – you have been in this hell for seven weeks!
    Does his psychiatrist even realize the extent of his episodes and behaviors? Maybe share these blog pages? What did s/he say about how long this stage would last, and how would you know if the new medication was working? Do you think he is having psychotic episodes on top of everything else?
    Just from your description it sounds like Alphonse needs full time medical supervision through this time. You SHOULD NOT be asked to cope with this alone at home.
    You said you have asked many people for help and reached dead ends every time. Hospital in patient would be ideal, but if that is not available, can you set up a temporary residential care set up for him, with a psychiatric male nurse? Or a male nurse at home (OK, hire a bald man)?

    Speaking of which, would it help, or make things worse, if you all wore wigs? He could have the sensory satisfaction of grabbing, and yet you would not be hurt.

    My heartfelt prayers to your family at this time, but call the doctor!!!

  5. Corinne February 24, 2011 at 3:03 pm #

    I don’t know what to write. I just know that I want to offer any help I could, in the way that I can. I am praying for you, Alphonse, your househelps, and your family during this difficult time.

    • Georg February 25, 2011 at 11:00 am #

      I haven’t checked your blog for awhile but I am saddened by what you are going through with Alphonse. I have a 15-year-old son with autism and can very well relate. We go through periods of calm (98%) and storm (2%)starting the time my son entered puberty. I have bruises to on different parts of my body that I am called a battered mom by family and friends. Like you, we often can’t pinpoint antecedents.

      If it will help at all, you may try the path my friend took. They hired a trained caregiver to pin down their son when he has episodes. The teen’s behavior has stabilized with just minimal incidence of aggression. This is, however, expensive, so it is not an option for us.

      Do take care of yourself. My prayers are with you.

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