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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Holding Pattern

I’ve been in a weight loss stall for a few weeks now. After I lost 23 kilos (about 52 lbs), I’ve been caught in a holding pattern of sorts. I try not to obsess over it or give in to anxiety and doubt. After all, I did this all by myself; I should trust myself that I can actually do more than I think I can. By changing the way I eat and view my food, I have effectively done what my many years of dieting have not been able to do. As such, despite my overwhelming preoccupation with numbers on the scale, I willfully focus on non-scale victories, like finally being able to fit into a dress I’ve been eyeing at Old Navy. I couldn’t fit into a 2XL before, now even an XL has room for me to move! It may be a little thing in the over-all scheme of things, but for someone who’s never been able to shop off the rack, it still is a victory.

I’ve decided to add more exercise to my daily routine to break this stall. Inspired by my friend G (incidentally, she got me started on this wellness journey), I’ve been walking more and moving more. And while I haven’t gained weight, I don’t want to take my hard earned loss for granted. My age and a host of factors associated with years of weight loss and rebound weight gain have made it harder for me to lose the excess pounds. Still, I’m not giving up just yet. I can see the goal post from where I am now. Even if it does take a while, I have the patience to see it through.

In the meantime, allow me to humble brag a bit. The top picture was A❤️ and me more than a year ago. The bottom one is of us today, five months into this new way of eating. A❤️ has lost about 17 kilos since December and I have to say, sometimes, his willpower beats mine, keeping me on my best behavior always. 😉

When I get into a holding pattern, I think I have to keep reminding myself to look at this to see the big picture. 😍 Not bad for old folks, eh?

Happiness is… a Hot Cup of Coffee

Most mornings, I break my fast with a cup of coffee. Some days I brew coffee; most days, because sleep is a premium, I go instant. I heat about two cups of water in an electric kettle and pour it over a heaping teaspoon of coffee granules. I add a packet of stevia, then a tablespoon each of heavy cream, butter, and coconut oil/MCT oil, the last depending on what I have at the moment. I pull out my Aerolatte frother and stir away, creating a rich, smooth, and creamy concoction. I smell the faint hint of coconut and the strong notes of coffee, and already, my senses are wide awake.

I like to take my time to savor my coffee. I usually just have one cup a day; on special occasions, though, I make an extra cup. But when Alphonse- my coffee guzzling son- comes out of his little schoolhouse in the morning, I have to gulp the whole thing down in a hurry, leaving only a teaspoonful or so at the bottom of the cup for him to drink. I have to tell you that caffeine and Alphonse don’t mix very well, unless I want a hyperactive man-child literally climbing the walls.

Lately, Alphonse has been asking for more and more coffee. I take that as a sign to stop drinking coffee in front of him so I decided to extend my intermittent fast to 18 hours, moving my BPC in the afternoons while Alphonse is busy. This way, I have a few hours to enjoy coffee without downing the whole thing in one go.

Now this is where Ember comes in to give my life an extra boost of happiness. I got the Ember travel mug as a Christmas gift over the holidays, and while I have accumulated a wide variety of mugs and tumblers over the years- from double walled stainless steel vacuum flasks to plastic reusable mugs and hardy acrylic cups to dainty ceramic teacups- nothing quite beats the virtues of the Ember.

Just what is the Ember?

The Ember is the the first temperature controlled travel mug that keeps your beverage at your desired temperature for hours, allowing you to enjoy your drink without hurry. For people like me who like to sip and savor, the Ember is a handy mug to have around. It may seem like a novelty, especially since some thermal mugs can keep things warm for hours, but once you’ve tried it, you’ll love the way your coffee (or tea) stays exactly the same way for hours.

At USD150, the Ember travel mug is a pricey deal, particularly when one considers that its volume is only 12 ounces. The 10-oz Ember ceramic mug is a little more affordable at USD80, but without a lid, it is more useful for home and office use. I prefer the flexibility and durability of the travel mug. The huge advantage Ember has over newer, less expensive temperature mugs (such as the Lexo tumbler or Joeveo’s Temperfect mug) is that it allows one to remotely set the temperature via a smartphone. While I write, or clean, or bake, or even get the occasional catnap, I keep the Ember filled with hot coffee and it helps me get through another afternoon of chores. I’ve been using it for a few months now and I can say with certainty that it is a great way to enjoy a hot drink any time of the day.

Most US Starbucks stores carry the Ember, but for those of us here in Asia, Amazon is our best bet for purchasing one. The good news is that the product is available for delivery to the Philippines.

Pros: easy to use, remote fine tuning available, completely washable

Cons: price, availability in the country

Verdict: If you love coffee, you won’t go wrong with the Ember. 🙂 It’s worth every cent.

“Not The Mama”

Image

When I brought out breakfast for the boys yesterday morning, Alphonse came up to me right away and kissed me. I was glad to see him looking happier than he had been of late, so, buoyed by the 3Es of the Son-Rise Program, I celebrated with whoops of joy and a silly dance.

Alphonse turned out to be amazingly responsive, using more vocalisations to respond to me. His “red light” moments were shorter, enabling me to sustain longer interactions with him.

While he was having his breakfast, I kept a running conversation with him. At one point, I asked him, “Did you have a good night’s sleep, Alphonse?” He responded with a loud “Yah” and a vigorous nod. I followed it up with “Did you have a good dream?” Alphonse roared “Yah!” again, smiling broadly and nodding his head in obvious agreement.

Of course, this Mama just had to ask: “Did you dream of Mama?”

Alphonse looked at me quizzically, then shouted a deafening “Eh! Eh!” He shook his head emphatically. An expression that can only be described as “ewww” 🤢 crossed his face fleetingly.

I laughed so hard I almost fell off my seat.

I wish I could have recorded the whole thing in video. When Alphonse opens himself up, he is quite the hilarious fellow.

Then again, do I give him nightmares? 🧐

Update:

Today, I asked him the same questions, and his replies were honestly consistent.

Me: Did you have a good night’s sleep, baby?

Alphonse: (shaking his head) Eh.

Me: Did you have good dreams?

Alphonse: (shaking his head again) Eh.

Me: Did you dream of Mama?

Alphonse: (nods sadly) Ya.

I do give him nightmares! This just cracks me up! 🤪

Meet Juki

When I came home from Blythe Carnival Singapore last November, I couldn’t stop talking about one particular aspect of the whole experience- the sewing classes. I had been to BlytheCon Japan the year before but I missed out on some of the sewing classes, so for Blythe Carnival Singapore, I made sure to be there for almost all of them.

Admittedly, I am a novice when it comes to sewing, and I can pinpoint the particular moment (throwback: Sewing Frenzy) when I developed a fear of it. Faced with my idols, the sewing geniuses behind Momolita and MisukeToybox, however, I braved abject humiliation and signed up for the short classes under them.

Despite my clumsiness and inexperience, I managed to finish the projects they taught us. I learned how to make a kawaii cloth headband (with a dainty ribbon on top!- see topmost pic under Misuke Toybox‘s tutelage and itty-bitty little socks under Momolita‘s guidance (see pic below). It took me two tries on both projects to come up with decent enough output, but let me tell you that the feeling of accomplishment was so worth it! 😍

I did buy a few souvenir items at the Blythe Carnival, but mindful of wanton splurging, I made sure to keep within my budget. And yet, even as I calculated and re-calculated my purchases, there was one thing I really wanted to bring home (short of owning a custom from Umami Baby or PJdoll, which, at this point in time, is still a big dream, cross my fingers🤞)- the Juki TL2010Q. This was the machine they let us use for the convention workshops. It purred like a kitten under my hand, didn’t bite my fingers off, and was just about as idiot-proof for a “second-rate, trying hard” crafter like me could be. Alas! For about SGD1100, it was more than my budget could allow; moreover, I could not bring it home without paying additional baggage fees.

I must have kept talking about the Juki for a while after I got back, until I found something else to obsess upon (yes, still obsessing about a dream custom) and all talk of the Juki petered out into wistful nostalgia. I learned to re-love my old Singer, (I now call her Jenny Lind, for the late singer in “The Greatest Showman”), never mind that she clangs a whole lot when she bites upon cloth and jars the whole table when starting and stopping. And when she did finally stop working, I resolved to find a repairman for her and not ditch her for a new model.

Then today, I came upon my husband hauling this around. A Juki! Whee! Better yet, it’s the Juki TL2010Q upgraded and released late last year- the Juki TL2200QVP! I am in love. 😍

Today, I am already plotting the hours for when I get to spend some quality time with my Juki. I have ideas brewing at the back of my head, designs for doll fashions I hope I can conjure into reality. Heck, even if I fail, at least I don’t have to manually sew Alphonse’s shirts again. The Juki will see to that.

My grateful thanks to my ever supportive enabler, A❤️, for always listening to me, even if I do go on and on and on obsessively. Thank you for always believing that I can be whoever and whatever I want to be. Love you forever. ❤️

Hair-Trigger Meltdowns

We were four in the car last Sunday, on a short ride which Alphonse asked for. Shortly after one in the afternoon, Alphonse suddenly handed us a set of his clothes (a white shirt and a pair of green shorts) which he had taken- on his own, without prompting– from two different drawers of his dresser, asked for our help in putting them on, and then, willingly- with no delays or lags- boarded the back seat of our car. We were surprised. We hadn’t taken a car ride together in months as the last few times, back in late November, had been fraught with episodes of anxiety. We thought that day would finally be a welcome break to our every day routine.

Sometimes, however, in the excitement of a singular event that comes so rarely in our lives, we forget how difficult transitions can be for someone like Alphonse. Without prior notice, without warning, he falls apart with severe anxiety. Like that afternoon, in the car ride.

Before we left the house, we had told him we were going to buy food along the way. Was he okay with it? We asked a few times to make sure he understood, and he nodded happily in acquiescence. So far, so good, or so we thought. Seated together in the back passenger seats, Alphonse and I held hands in the car; he even pulled me in for a kiss a couple of times. Now and then, he would ask me to blow bubbles for him, which I did, and he flapped happily in his seat, making little squealing noises of joy.

The car ride started out so well that we let our guard down and became complacent. Then too, perhaps a part of me was tired of overthinking things, of always analyzing situations and preparing for them, that I just let things take their course. Sometimes, all I really need is an ordinary day.

But ordinary has never been a routine part of our lives and we all knew it. I should have anticipated that.

The problem started when his dad went down to order food for takeout and in his haste, he forgot to tell Alphonse where he was going and what he was going to do. Within seconds, Alphonse’s happy humming changed into growling. Before the warning had even registered in my brain, he had my head locked underneath one arm as the other hand pulled on my hair. Alex, who was sitting in the front passenger seat, jumped to the back to give me a hand. I cannot describe the anguish I felt at that moment, seeing my sons grapple with each other as Alex sought to hold on to his wildly flailing, kicking, scratching brother. It’s a heartbreak only a few of us will ever know, and no matter how many times it has happened in our lifetime, it is one thing I will never get used to.

I was able to break free with Alex’s help. I called for his dad to come back and as soon as A♥️ showed up, Alphonse began to settle down again. A few more minutes and he was mellow and smiling again.

I am trying hard to remember everything that happened so I can continue to identify the triggers of his anxiety and anger. It’s just that sometimes, it is too hard and too tiring. I close my eyes in the middle of this short reflection, willing myself to find quick answers, but I am drawing a blank. Every day is a roll of the dice, and yet we have no choice but to keep rolling.

It’s back to the playroom for now.

Help-less, not Helpless

It’s Friday morning; one more day and another busy week will come to a close. I look forward to the weekends, as many of us do. It’s when I get a couple more hours of shuteye without interruption, when I don’t have to wake up too early to get a jumpstart on a long day. On weekends, we usually get breakfast to go for the kids and that, by itself, feels like a rewarding treat after a long, hard week. Compared to weekdays, weekends are not as stressful, although they can be just as physically taxing. The time when we spent Sunday mornings in bed doing nothing is a time long gone.

We’re surviving these help-less seasons in our household strongly, something no one would ever have thought possible in a household with autism. In a country where domestic help is legal and available, our family is one of the few who have decided to do things our way. In this case, everyone pitches in and everyone pulls his or her own weight. Not even Alphonse is exempted. Of course, we’re dead tired at night but the house is clean (somewhat, haha), our bellies are full, and Alphonse is almost always happy. That, by itself, is already big change.

When I injured my neck in 2009, I had a lot of difficulty moving my upper extremities. Back then, I couldn’t lift my arms, my hands were thick and numb, and my neck stayed uncomfortably bent for months. I couldn’t do a lot of things that I used to do. I was suddenly very dependent on others to help me with activities of daily living. My husband took care of me when he was at home but when he was at work, we needed more help around the house, people who would care not just for Alphonse but for me as well. Thankfully, my neck got gradually better over a two-year period and I was able to take over some of my previous chores again.

The nannies stayed because Alphonse fell in love with them. They became his lifelines to the world and having just lived through my “limited participation” in his life, we didn’t want to take away any of his emotional and physical security blankets.

In time, however, they all said goodbye to make new lives for themselves. We looked for replacements to help with Alphonse but none worked out. We went through a succession of people before we finally decided to quit the cycle. By then, we noticed the emotional toil this revolving door of nannies left on Alphonse. He was, in turns, self-injurious and highly aggressive, unable to trust anyone, not even us.

In the many months since then, we’ve overhauled how our household works, splitting chores among the three of us and assigning simple tasks to Alphonse (mostly clean up scut work and removing laundry from the laundry wash line). Over time, we also reestablished a new relationship with Alphonse. Today, Alphonse is thriving under our care. He is expressing himself more, and for a nonverbal fellow who is used to using his burly brawn to get his way, it is quite a feat. We haven’t had to use the wrap/restraint his previous caregivers employed for meltdowns (knock on wood) and I think that’s because he feels more secure with us around him. He knows we are always here for him. We don’t put him off for a cellphone call or Facebook. We kiss him more, hug him more, and just love him more.

Lest you think I make it sound so easy, allow me to disabuse you of any rose-colored notion. Being without help isn’t so bad really; any full-grown adult should be able to fend for himself. But when autism gets thrown into the mix, it becomes quite a different thing altogether. Think about having an overgrown man-child constantly needing you, demanding one-on-one time, requiring 24/7 supervision, and think about how one can only do so much in a day and within limits, and you can maybe scratch the surface of what we live with autism.

The truth is, most nights, we are dead on our feet and running on empty. Some nights, even rest isn’t possible as Alphonse occasionally finds sleep elusive. These are the moments that test our patience and strength. When most everyone would be willing to throw in the towel and give up, we draw on our rediscovered sense of unity to help each other get through one more night. And one more day. And maybe just another night again. And so on and so forth.

I guess it’s true. You never really know how strong you are unless you are tested and pushed to your limits. And knowing that, I don’t think we can ever call ourselves helpless again.

Alphonse says hello! ❤️