Raising a Child with Autism: Parents Speak

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.

~0~

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!

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Smart Parenting At Any Age

In less than a month, my youngest son would no longer be a teenager. My oldest boy became a legal adult this year. I am, finally, what can be rightly called an OLD mother.

Most of my friends are too, with children who have finally earned the right to their own lives. Being an old mother can be both thrilling and sad, for even as we look forward to our children making their mark in the world, we certainly miss the days when we were the center of their universe.

On second thought, however, I belong to an even smaller subset of old mothers- those with adult children with autism. This year, when Alphonse turns 20, he is physically a grown man but his emotional and cognitive ages are way younger than his chronological age. As such, at a time when other moms are developing new interests and passions to fill in the time they used to spend taking care of children, I am still finding myself coping with occasional toilet issues, food jags, and the many challenges of raising a young child.smart parent award

It makes sense, therefore, to keep abreast of strategies and products that help mothers (and fathers) make their jobs easier. I find myself looking for recommendations all the time, and while Alphonse is certainly past his infancy (hmmm… more of a preschooler, except very large and very handsome), some of the products babies and toddlers use still come in very handy. Think baby wipes, non-flourinated toothpastes, and even skin cleansers!

If you’d like to check out parent-tested and recommended products, head on to Smart Parenting’s Best for Baby Awards for this year’s shortlist of the best products for your little ones. Even my not-so-little one loves them!

 

Manscaping with Autism: A Shaving Question

Sunday evening, I saw Alex come out of the bathroom smelling strongly of shaving cream. He saw me looking at his clean-shaven face and shrugged mildly, as if to say, “There, Mama! Are you happy yet?” I am, after all, his facial hair’s greatest opponent.

And yet, even as I constantly hound Alex to maintain only a decent amount of facial hair (I’d prefer that he shaves them off completely, but we compromised), I cannot ask the same of his younger brother. Alphonse’s bushy moustache and the faint beginnings of a goatee grow thicker by the day, casting shadows on his baby looks, and I am unable to do anything about it.

For many young people with autism, personal hygiene and grooming become stickier issues with the arrival of puberty and adolescence. When Alphonse was a little boy, these issues were easily circumvented by supervision, assistance, or direct intervention and manual (hand-over-hand) instruction by his parents and caregivers. But with the many changes that herald the onset of adolescence comes a host of challenges secondary to a young person with autism’s difficulties in cognition and understanding, multiple sensory issues, and uneven levels of independence. Where once it was deemed “doable,” adolescence introduced extra difficulties; it is no longer as easy as bundling Alphonse up in a towel to brush his teeth or comb his hair straight. Parents like me have to contend with size and the disproportionally strong resistance that comes with this increase in size.

Alphonse is 16. In the past few months, growth of his facial and body hair has become noticeably faster and thicker. From pictures as recent as eight months ago, it is apparent that wisps of baby fuzz have now been replaced by man hair- and lots of it- in his upper lip and chin, in his armpits, and even in his pubic area.

Body hair is just one of the many physical changes that come into play at this time. For some, body odor is also a new and disconcerting development. Acne becomes a serious problem for others. Alphonse and other young men like him still have it a little easier, though, as young women face menstruation and its accompanying hygiene issues. For parents, however, the difficulties rest in more than just the physical changes. At every turn of this fascinating period come emotional lability and confusion, particularly for those with more profound disabilities.

I can speak only for my son, who has severe autism and requires major supervision in all activities of daily living. It is a blessing that Alphonse has a great affinity for water, so coaxing him to bathe is not such a difficult thing. It helps that he already has his own schedule for it (three times a day, plus after every “play water” session, probably ten times a day all in all).

To manage the occasional sweating (he has very little body odor), Alphonse has learned how to use a deodorant spray. Sticky roll-ons were out; Alphonse held up his arms the first time we tried, his face etched with disgust at the feeling of wetness in his armpits. Deodorant sticks were also ruled out; they were too easily mangled and mashed. Teaching him to control the spray nozzle was a tricky thing, but he did it after endless practice. Nowadays, he no longer accidentally shoots us in the eye with his deodorant spray.

Quite luckily, Alphonse is not prone to breakouts, unlike his older brother. (Another issue avoided.) I shudder at the thought of his nails scraping and scratching through them, as he is wont to do when it comes to mosquito bites and small abrasions. When he does have them, we treat them when he is asleep, using drying agents like benzoyl peroxide and/or topical antibiotics.

Our biggest issue these days is still facial and body hair. Often, they irritate him and make him scratch. Sometimes, he even picks at them, pulling them out by the roots. Moreover, thick facial hair is unsightly and presents difficulties for the not-so-conscientious eater like him. After meals, he sometimes has bits of food left hanging over the edges of his whiskers.

The easiest way to solve this would be to shave him, but how?

Shaving with a manual razor could mean accidental cuts and gashes for a person who would not sit still for long. Using an electric shaver with smooth edges would diminish the potential for nicks and cuts, true. But uh-oh, the sound of electric shavers makes him anxious and more liable to throw a tantrum. (He has had issues with the hair dryer for years.) Will depilatory creams work?

Then again, do we even need to shave him at all? Here’s where you vote and tell us what you think.

To shave…

He looks really cute and clean.

Clean is in.

Or not to shave…

Leave him alone, woman!

So what if he has food in his whiskers, ehr, moustache?

That is the question.

The Things I Put Up With Everday

Today is the first day of Alex’s Christmas break. It was not yet even ten in the morning, and already, he was driving me batty.

As soon as Alphonse was up, I started making the beds. I was finishing up with the linens when I asked for help. One of the nannies readily lent a hand. And because the mattresses were huge and I wanted crisp corners in the linens, I asked Alex, who was then using the PC in my bedroom, to use his brawn to help lift the mattresses up.

Mama:  Alex, please help Ate Bebsy make the bed.

Alex: (closes his eyes in prayer) Lord, please help Ate Bebsy make the bed.

Mama: What are you doing? I said help Ate, not pray for her!

Alex: (in a pious tone) There is no greater help than one from the Lord, Mama. 

Mama: Aaaarrrggghhhh!

See what I have to put up with everyday from this boy? One day down, fourteen more to go… I wonder what he’ll think of next.

~0~

 *Filipino for Big Sister, which is used as a term of endearment and respect

Home Again

We are home.

It has been a terrible week, one filled with too many moments of uncertainty and dread. With the grace of God, we have made it back home. Alphonse is not yet fully recovered. He is weak and irritable still. He sleeps most of the day and his appetite is nowhere near his usual. He is still covered in rashes but he is no longer bleeding. That he made it through this past week is a testament to the power of faith and prayers. We thank you all who have wished him well and said a prayer for him. We can’t begin to tell you how we appreciate your words of comfort during those tiring, difficult days.

It was time to remove the IV line, too.  Alphonse’s hands, having been swaddled and bound for a week in bandages, had started swelling. There were wounds and bruises in his forearms where the wooden splints dug into his skin. His forearms had turned a rather ugly shade of mottled red and blue and we worried what we would find underneath when the bandages were removed. True enough, when we tore the bandages just before we went home, his hands were swollen and stiff. Worse, they smelled so bad that no one could stand being around his hands for long. Even repeated washings with soap, shampoo, alcohol, peroxide, and lemons could not eliminate the awful stench of his hands. Good thing he bears with the gentle teasing rather well. Say “stinky hands” and Alphonse will hold his hands to his nose and give us a wan smile.

Attempting to escape

It’s hard to be sick, even under the best of circumstances, and harder still if you add autism to the mix.  The biting and gnawing have been carried home, as I feared. Today, he tried to bite off a refrigerator shelf when he got angry. I also caught him gnawing on a small towel which he later shredded with his teeth. We’re lucky this new behavior hasn’t been carried over to biting himself or us, but we’re always wary and conscious of it. His face still carries the marks of all his attempts to chew off his bandages; his lips are split, his chin has many shallow abrasions.

While Alphonse completes his physical recovery at home, we pray that the emotional trauma of being bound, restrained, and held over and over again will wear off in time. It can’t be easy for his mind to comprehend that all these were done with concern and love for him. He is very fearful of things. His emotions are still very labile and unstable; he seems on the edge even now. He has angry outbursts for no apparent reason, taking his anger and frustration on our material possessions. And just like in the hospital when all he wanted to do was to run away and escape, he tests our patience with his endless attempts to bolt and run away.

For all these, we are still happy to be home, back in safe, familiar surroundings. I have a week’s worth of chores to catch up on- laundry brought home from the hospital, cleaning, dusting, and even the half-finished Christmas trimmings. And yes, more shopping for presents. It seems impossible to think of Christmas after this whirlwind of a week, but perhaps the holidays will help Alphonse’s mood. I’m crossing my fingers.

Longing for Home

I’m blogging from the hospital today. Alphonse and I will be here for a week, at least, so my posts will have to be short and sweet.

Last Saturday night, Alphonse suddenly developed a high grade fever. I had just gotten over a nasty bout with the flu so I thought I must have passed this virus to him. Monday, however,  Alphonse seemed unusually lethargic and not at all his usual buoyant self. That morning, when his fever breached 104 degrees, we brought him to the hospital for a pediatric consult. Monday was a holiday so his regular pediatrician was not holding clinics and we were brought to Emergency services. At the ER, they looked him over and took blood for testing. Two hours later, when the labs came back, we found out he was postive for the Dengue antigen.

It took nine people to put his IV line in- five nurses and doctors, his dad, me, and his two nannies. Alphonse was combative and his instincts for self-preservation were on an all-time high. He felt very threatened and he fought us with every ounce of his strength. Even when sick, Alphonse is very strong  and can easily push us away or remove our hold on him. In the end, he needed to be physically restrained so we can draw the blood and insert the line.

Three hours later, he managed to rip off this precious line. While we splinted both hands and covered them both with thick towels and tape, he was still able to get loose. Within seconds, he had freed both hands and ripped off his line with such violence that blood spattered the floor and walls of his room. He and I struggled but I was no match for his strength and conviction.

He didn’t sleep at all last night; we’ve been up close to 48 hours. Today, he distrusts us and is suspicious of everything around him. He has started biting again as he tries to rip everything he could grab with his teeth. His hands remain splinted, but I don’t know for how long.

It already feels like a long day and we’re not even halfway through the morning.  As I write this, he roams the halls in a borrowed wheelchair. He wants to go home and sleep in his own bed, we’re sure of it, but we can’t wait this out at home. It’s just too risky.

Hospital confinements, even in the best and most comfortable accommodations, are always double-edged experiences for him, for even as we try to make him well, he becomes weary of the world around him. These experiences wound him deep; the scars linger long after he is home. I am worried about tomorrow but I can only afford to focus on today. So I hold my breath and keep the tears in check, if only for today, because tomorrow, well, tomorrow is still a day away.

Wake-Up Call

I didn’t realize it was Wednesday all over again till I sat down and found corned beef at the breakfast table. Corned beef is always Wednesday morning’s breakfast, the same way tocino (sweetened cured pork) is on Sundays, or boneless tinapang bangus (smoked milkfish) is on Saturdays. Everything is downright predictable in this household, save for some rare days when someone wants French toast made from old raisin bread with a generous dollop of apple cinnamon marmalade (that someone is usually me), or a less imaginative but always hungry young man wants fried crisp Spam with garlic rice. Regular days with regular schedules keep this household running smoothly… until something goes wrong, that is.

I wanted to share the details of Alphonse’s most recent misadventures, but on advice from my better half, decided against it. A feels that Alphonse deserves a bit of privacy to his life and that as Alphonse turns older (he will be 16 in exactly 14 days) I will have to be more discreet about the things I share about him with the public. I should have realized that much earlier. That Alphonse has autism and that he still is very much a young child in terms of cognition and experiences should not take away his right to privacy. This is most important now that he is on the cusp of manhood and on the brink of a new self-discovery and voyage. Some things- not all- will have to be just among the family.

I write about my children often, that cannot be denied. When they were smaller and my world revolved around parenthood, every single moment of my life was about them. It would have been impossible then to separate the writer from my person as a mother, seeing how my history and experiences of the world were almost always seen through this particular perspective. And yet, now that the kids are beginning to pull away from my apron strings, I will have to let them speak of their own lives themselves and choose what they want to share with the world or keep to themselves.

The truth is, it’s difficult not to see Alphonse as a baby, not when he is dependent on us for almost everything. From morning till night, his world is the world we built for him. Even as we help him discover new things in the world, this home, this life, and this family are the things that keep him grounded to us. We look at him and still see a child when the whole world already sees a young man. I guess that’s where the lines are sometimes crossed, when I share too much of his life that may not be mine to share anymore.

I won’t stop writing about my kids, but I will be more discerning when I do. I will keep in mind that these are young men, who regardless of their abilities and/or disabilities, must always have a choice on who and what they want to be. It won’t be long now before they test their new wings. As a parent, all I can do now is to let them fly.