Tag Archives: Autism

Zero-Waste Journey: Alphonse’s Cup

27 May

One of the goals I’ve set for my family this year is to transition to a zero-waste lifestyle. I joined a couple of groups on Facebook that teach beginners how to do it, and they all suggest starting with little steps at first till it becomes a completely doable lifestyle. It seems easy and simple enough, that is, until I consider some of the challenges that come in a household with autism. I don’t want to give up on this easily so I’ve been hard pressed to look for solutions.

Case in point:

My son Alphonse, a young man with autism, is a ripper, shredder, and smasher. He has been all his life. Over the years, we’ve tried to redirect his destructive interests into other areas, with little success.

Aside from ripping (paper and clothing), shredding (paper, clothing, and plastic), and smashing (everything else), he also loves to bite and chew into things. As he grew in strength and size, we’ve had to abandon the use of glass in our home as even dinnerware touted to be “unbreakable” have been shattered to smithereens. We have used stainless steel, melamine, and plastic dinner and service ware to keep him safe but he has started biting into them too. Last year, he ended up with several cuts on his lips and tongue. Today, he nurses a recurring wound on the bridge of his nose, the result of pressing deeply the roughened rims of our drinking glasses on his face as he drinks.

There’s that wound on his face, see it?

Recently, we’ve had to limit and/or abandon the use of these materials because of his tendency for self-injury. While we looked for replacements, we used disposable paper and plastic cups for him but I felt really guilty each time he shredded them after a single use. We wanted to keep Alphonse safe but we were creating more trash to do it, and this thought nagged at me constantly. Sadly, our local malls didn’t have much to offer by way of alternatives but the through the Internet, I discovered silicone drinking glasses. Finally!

Yes, I love silicone! It’s handy, flexible, and Alphonse-proof. It’s also soft enough not to cause injury to Alphonse’s face and mouth. Moreover, silicone doesn’t make alarming clanging noises when dropped accidentally or thrown intentionally, which is what usually happens with Alphonse around.

Still, not all silicone drinking glasses are made equal. The first set we bought was a set of four Brovino wine glasses purchased from Amazon. We loved that these glasses could withstand Alphonse’s constant biting and throwing. They weren’t quite stable enough, though, tipping quite readily when bumped accidentally. Then too, learning to hold them properly was a process as the contents spilled easily if our grip was too hard. So even as we used these, we kept looking for other glasses to replace them.

A few weeks ago, I discovered a different kind of silicone glass. Supported by an embedded stainless steel frame inside, the cups were said to be kid-friendly, microwaveable, dishwasher safe, plus they didn’t collapse when gripped. The Silikids Siliskin silicone cups were available locally through an official distributor so we didn’t have to worry about international shipping and taxes. Their prices were also very reasonable; a two-pack goes for PhP700 when it retails USD12.95 in the Silikids.com website. At the time of purchase, only 8-oz kid-sized cups were available. We loved the cups instantly despite their size (we like big drinks so we needed refills right away) because true to their word, they were very easy to use. Unlike our first set of silicone glasses, these were quite firm and stable and didn’t tip over when bumped. However, less than three weeks from purchase, Alphonse’s constant biting created cracks in the rim. A few days later, he peeled off a piece of silicone from the stainless steel ring with his teeth, almost swallowing it in the process.

Even with this outcome, I still like the Silikids cups and will probably get the larger 16-oz ones for myself. The brand is just not a good fit for Alphonse or for any individual who chews and bite things avidly.

The “strongest silicone cup” was no match for Alphonse’s teeth. Oh well.

A few weeks ago, my sister-in-law (A’s sister and the kids’ godmother, J) gifted Alphonse with a two silicone cups she purchased in the US. Of the two, Alphonse took to the bigger one immediately, a foldable soup cup from Smart Planet. It’s large enough that it doesn’t need constant refilling and the plastic rim has stayed smooth despite being gnawed on. This is Alphonse’s cup for now.

See Alphonse enjoying his new cup? He always steals it from the kitchen. It multitasks as his drinking glass, ice cream bowl, and bubbles bowl too!

We’ve done away with paper cups since we shifted to silicone glasses. We’re also reusing the last of our plastic cups, a lot of which came from food deliveries, and we won’t be buying more. While we already segregate, recycle, and compost, I truly feel that we could do a lot more to reduce our impact on the environment. This may be a small step but one that’s the beginning of our journey to limit the amount of waste we generate.

In the meantime, the search for the perfect silicone cup for Alphonse continues.

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His Mama’s Name

9 May

Every morning, we follow a routine to get Alphonse ready for the day. Part of this routine is taking his medications after breakfast. Even the order of his medicines has been planned to get him to swallow his pills and capsules first before we shift to those that need to be chewed, such as his supplements.

Every morning, this is our dialogue:

Me: This is your first medicine. It is yellow and small. Are you ready?

Alphonse: Ha! (Which means “yes.”)

I put the yellow pill on his tongue and he dry swallows it. He takes a sip of water afterwards.

Me: This is your second medicine. It is pink. Your Mama’s name is Pinky. Pink color and Mama Pinky!

Alphonse: Ha! (Which means “yes,” again.)

Mama: Are you ready for the second medicine?

Alphonse: Ha! (Which means “hurry up and give it to me already!”😜)

I hand him the second one and he dry swallows again. Sometimes I have to remind him to take a sip of water to wash it down.

Me: Please drink your water.

Alphonse obediently takes a short sip. Then he opens his mouth to show me there is no pill inside.

Alphonse: Ha! (Which means “Look! It’s all gone!”)

Mama: Wow! You did that very well! Thank you for taking your medicine.

We do this until we finish all his morning medications, eight all in all, including chewable supplements.

At the end, I ask him if he remembers his Mama’s name.

Me: Alphonse, do you remember my name, baby? I told you my name at the start.

Alphonse: (pauses to think, then smiles broadly) Ha!

Mama: Okay, big boy. I know you’re smart. What’s your Mama’s name?

Alphonse: (takes a deep breath, then shrieks) Mama!!!

What a smart boy I have! 😂

This is Alphonse being naughty and cute at the same time, hehe. He loves mouthing stuff and would walk around carrying this -or some other thing- in his mouth. (Yes, that’s a KFC gravy cup which we reuse for his little snacks and cut-up fruit. )

Easter and Autism

1 Apr

Alphonse didn’t sleep on Thursday night, which meant the whole household went with little or no sleep, too. We were all addled and dazed the next day, doing our chores on autopilot even as our brains were blinking red in distress. Lack of sleep, repeated over and over again over time, has a way of wearing all of us down.

While most families were in their rest and relaxation modes for the long weekend, ours was in full work mode- keeping him busy, pacifying his fears, redirecting his aggression, and making him happy. There is no respite in sight. It’s not fair, I know, most especially for Alex, but for better or for worse, this is our life.

Then yesterday, in a sudden fit of anger, Alphonse pulled my hair again -what’s left of it, anyway- and kicked me on the chest while I was down. As I staggered beneath the weight of his heavy hands, I felt his foot connect with my chest. The kick came so unexpectedly that against my better judgment, I shrieked and cried for help. In the last few weeks, talking Alphonse down from the edge had worked rather well, but yesterday, he was in full meltdown mode that he was unable to pull back anymore. My husband, alerted to my cries, rushed to my aid and was able to disengage Alphonse from me. He took over the rest of the afternoon, doing gross motor exercises with Alphonse to tire him for the night.

This morning, my head heavy and throbbing, my chest tender and hurting, I had to summon all of my good cheer and positive energy to face Alphonse again. I have to be honest; sometimes, it isn’t easy to wake up raring to face the world again, more so when the past day has been a particularly bruising one. Some days, I wish I could just bury my head in the sand and not come up for air. But seeing Alphonse- wide-eyed and unsure each morning, stepping into our world with such fear and trepidation- erases all my ambivalence and I dive back head first into our daily grind.

When I reflect upon the Holy Week and what it means to us as a family, I am reminded that Love is a truly powerful force. It is Love that makes forgiveness possible, even when we have been hurt over and over again. It is Love that summons mercy and compassion even when anger and disappointment threaten to overwhelm us. It is Love that covers us with an impenetrable armor of hope and optimism. In the middle of tears, it is Love that makes us laugh and smile again.

I admit I have been dispirited and disheartened many times over the last few weeks. Working with Alphonse daily is exhausting work that requires pouring all my emotions, energy, and attention into him; when he rejects me as he does, I am crushed and defeated, submerged in a sorrow so deep that my strength and determination are often not enough to drag me out of my despair. But Love, even in the darkest, deepest hole, brings a sliver of His light and I am able to recognize- nay, see-something beautiful and hopeful in Alphonse and in our lives again. Without darkness, there is no light, this we know only too well.

In the season of His rebirth, we are grateful to be reborn in hope as well.

Raising a Child with Autism: Parents Speak

23 Mar

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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“Not The Mama”

7 Mar

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! 🤪

Hair-Trigger Meltdowns

27 Feb

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.

His Superpower is Jumping

13 Jan

One of them, anyway. (The other is making water dance!)

Alphonse started jumping even before he could walk. With our hands on his sweaty little armpits, he would bounce and jump for hours till he was tired and ready for bed. It wasn’t all uncommon for him to bounce when held up and this skill evolved into jumping independently by his first birthday.

As he grew older, jumping became his second favorite physical activity (playing with water was the first) and over the years, he has worn out our spring beds, not to mention countless trampolines. Having learned our lesson and refusing to make King Coil any richer, we did away with springs and changed our bed foams to US rubber. The trampolines — well, we didn’t have any real choice on that.

Now that he is adult-sized and heavy to boot, even the largest personal trampoline available in local sports stores gets broken within weeks. We were not only spending money so often for his trampolines; we were also wasting time and energy looking for sports stores that still carried the largest sizes. Only our suking bote-diyaryo guy was ecstatic at the number of trampoline frames and broken springs we were giving him.

Yesterday, we got Alphonse a new trampoline. Finally! He hasn’t had one in months and he has grown fat around the belly from not getting enough exercise. We were afraid he would not like it. Thankfully, he took to it like fish in water. In fact, he loves it so much that he said yes to making a short video! I was so impressed that he even got dressed for it when he is almost always in his birthday suit at home.

See that nice little smile he has? 😊

I’m so glad Bubi Trampolines went on sale. Thank you, Bubi Trampolines, for the great product, as well as your home service and delivery. Special mention to Mr. Jonel Sumbillo for answering all my inquiries and to Mr. Fer John Nicolas for delivering and assembling the trampoline here at home.

P. S. His Mama is his spotter, dancing and jumping like crazy beside him. 3Es, yeah!

P.P.S. This is not a paid post. We paid for the trampoline at listed price.

❤️P