Our First DMD Awareness Day

As America observes Labor Day some people all over the world celebrate Duchenne Muscular Dystrophy (DMD) Awareness Day and I, my wife, and Marcus were among those who participated in our own simple way. Kudos to wifey, she had a perfect plan on how we should go about it which is by celebrating the day together with people whom Marcus stay with five days a week.  So today, we surprised his classmates during their lunch break.

Wifey and I went to the school with our car and bag packed. We stopped by to meet up with the one who baked the cupcakes, dropped by Greenwich for the pizza, and  we filled our backseat with red and white helium balloons from a small party needs store. In the trunk were our presentation materials—a YouTube video saved on a laptop and a wheelchair.

Questions were all over when we entered the classroom as everyone seems to wonder when they saw me pushing the wheelchair in—the sight of it entering the school gate made waiting parents’, yayas’, and guardians’ heads turn as well. But with most of his classmates already familiar with how Marcus behaves, I soon heard ahhs and ohs as a sign of their realization of  whom the attractive red and blue wheelchair belongs to. Curiosity heightened when I made a short introduction of why we are there. Then I played BrainPOP’s animation about Duchenne Muscular Dystrophy. Everyone was all ears.

The attentive audience.

Reactions differ as the 4-minute video played. Some smiled—after recognizing the similarities of the animated character’s traits with that of Marcus—and some tried to absorb what they have just seen. Marcus’ adviser and the school’s principal were also present and even if they are the only two adults who now begin to understand more about Marcus’ condition made our efforts to spread the word about DMD all worth it.

We capped the celebration by letting the grade one class release the red and white balloons. Everyone enjoyed the celebration so we declare our first DMD awareness day as one mission accomplished.

Saying goodbye to the red and white balloons.

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My wife and I also took the opportunity to give everyone a heads up that sooner or later Marcus will be leaving their school and most of them cannot believe it. Other kids who are also fond of Marcus were surprised about the news. Sigh.

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Mood: 3/10 Honks! (Marcus’ 2nd time to shower in the rain.)

What writing exercises reveal

It is perfectly normal I guess for kids to show and express their influences in school. For them to see that their heroes or people or things they admire are with them while in class could lessen their anxiety or better yet inspire them to focus on their activities while seated in front their teacher. It must be the very same reason they want bags and matching pencil cases that have the images of their favorite superhero or even favorite doll. “I will be the next Ant-Man.” “I will grow as lovely as a Bratz.” We’ve been school kids before so we should understand.

Drawings would also reveal what is on their minds, what they imagine all the time. And even words they write could show what or who their influences are. Case in point is what we discovered just recently from Marcus’ Mastering Handwriting book.

The current favorite–Batman.

Ok, that’s fine. We know Batman, kids love Batman. So B for Batman is a no-brainer. Back in the days he would have written Ben 10, but he got bored of it.

How about H? Name a character whose name starts with a letter H? Can’t recall one? Hawkeye? Hellboy? Hulk? Nope. Harry Potter? Eww. Oopps, pardon my manners.

Neither Hawkeye nor Hellboy, not even Hulk made it. Hitman did.

Yes, Hitman made it on Marcus’ H list. This is despite the fact that I have already kept his Hitman Xbox CD and he never saw any of it after the first 10 minutes of that game after I learned that the Hitman is fond of pianos except that he is more interested in the use of its one wire–one wire is good enough to play his death tune. But Marcus soon heard about this character again from the trailer of the movie Hitman: Agent 47 and its cinema posters in the mall didn’t help us in hiding the character’s existence. So that writing exercise must be a subtle request to allow him to watch the movie and had it been PG13 I would have given in. However, with its R13 movie rating means that it is a lot more than just piano wires and its unconventional use. So yes, you could take a breather now, we are responsible parents after all. And for that writing entry, we have asked him to remove it. The word ‘hit’ would be good enough for now.

***

Again, no Hitman. We watched Pixels. It is his first discounted movie.

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Mood: 4/10 Honks! (There’s a queue on the treadmill, all weights today.)

Back to School 2015

Today Marcus goes back to school. Back to where he used to be instead of the one in Batangas. This time it was us who are more anxious about him going back to school after learning about his condition this year.

The thought of him mingling with active school kids gives me and my wife that uneasy feeling. We fear that he might fall while playing or even just going in front of the class. We fear that he might get depressed if he sees other kids running around without effort while he just sit and watch them. We thought that he will have new sets of classmates as we heard that none from his previous class enrolled.

Well I was wrong. I accompanied him to school this morning and I have never been more happy to see old faces and to see them excited to see Marcus. So excited that they all transferred seats to be with him.

It is also nice to discover that the school was able to complete the construction of the new rooms. Marcus now goes to an entirely different room as a grade one pupil. So far this organization have been doing a great job. I think I could now say that this is a good start to a new school year.

New classroom, old happy faces.

 

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Mood: 2/10 Honks! (Can’t wait to see how this day will end.)

(Street) Smart?

This week is Marcus’ 3rd week of summer class and yesterday after he exits the classroom I was able to have a short talk with his teacher to check for progress.

Soon I learned that while he gets marked with stars on the back of his hand for doing a good job almost often since day 3 he seems to be fooling around–which I suspect happens when he is bored. His teacher said, “I know that he knows the answer but sometimes he would deliberately give the wrong one.”

Upon arriving home I had him reviewed using the Word Family House game with a very clear condition: for every wrong answer he gives I delete one of his apps from our Telpad tablet. The frustrating session began. He says ‘cup’ instead of ‘mug’, he says ‘punch’ instead of ‘hit’. The clues I’m giving weren’t just working. He lost three apps by lunch time.

Today at school before class I reminded him that there will be another round of review, just like yesterday, same rules apply. Excitedly, he told me, “Daddy, I have given to mommy some of my games. I have placed Talking Tom and Minecraft in her apps folder.” Those were his favorite games, now it his mom’s which I can’t technically delete this time. I’ll give to him. Street smart, isn’t he?

***

Mood: 1/10 Honks! (Jack Bauer in 10 minutes.)

Unexpected Bully

This Monday we heard a very surprising news, one so unlikely, when we picked Marcus from school. I got off from the car and approached two anxious faces–the assistant teacher and school director–looking after our kid as he does his usual end-class playtime. And I my gut feel proved itself right when the school director walked with me and Marcus back to our parked car.

“Sir, I will tell you something about Marcus…he’s been acting up in class. This morning he wrote on his classmate’s school uniform. Their adviser also said that every now and then she has observed aggression since the start of school year a month ago.” Boom. The few meters to our idling car felt like a hundred. The director’s report made me walk a lot slower, it dragged me more than the weight of Marcus whom I was cuddling then. I feinted a smile to appreciate the feedback.

“What’s the news? What were you discussing with Sir Ric?” asked my wife who was waiting inside the car. “How’s school Marcus?” she added a cliché question as Marcus settles down at the backseat. The next thing my wife heard struck her just as it did to me. To display some bullying is the least of the things we expect to hear about our son. The news was just unbelievable. There were some serious exchange on our drive back home.

Yesterday, I already talked to our son’s adviser and likewise had a chat with the director at the dreaded principal’s office. I have told them that Marcus has been made aware of what he did and that I am open to receive updates regarding his behavior in the next days. “Let’s talk again next time, but hopefully not about Marcus,” I said as I stood up to leave. The director agreed, “Yes, sir. Hope it will be about our badminton game.”

***

For the very first time, Marcus helped out in washing the dishes after lunch. He also wiped the table top. I wonder what’s up this time–must be his way of entertaining himself as it’s nine days since I had our cable TV subscription discontinued.

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Mood: 2/10 Honks! (He just played the Christmas CD.)

School Year is Around the Corner for Our Ben 10

Summer is coming to a close for Marcus. Spending almost two months of vacation wherein he has continuously shown proficiency in his computer skills—kudos to the iPad from the Lawsons—and improving in terms of physical activities—courtesy of the time he spent with his cousins, we will be enrolling him today for Kindergarten level education.

Although he answered half-heartedly to our question if he is ready to go to school again, I feel that this year he will be more eager to discover new things. Last school year, the lessons from school along with what he learns at home have helped him to start (and shutdown) the PC; type the boot up password; log in on his own account; search key words (using cheat sheets just so he can spell the words); and recognize the common computer terms such as: download, loading, next, back, close window and maximize window. Remarkably, my credit card remains safe from Apple store charges as he can distinguish free and paid apps.

Not to be forgotten as well is his interest in new cartoon shows on cable TV. From last summer’s Phineas and Ferb, he has moved on to programs such as Ninjago, and the Ben 10 series. He is so into these cartoons that he can memorize a majority of the characters which is something that never fails to surprise me and my wife and it make us wish that the school has enumeration quizzes for the names of the heroes and villains of these TV shows.  We know he’ll ace it even if he pronounces both Lord and Lloyd Garmadon just the same.

This school year, however, he will be into a different time slot. Waking up early is therefore the first challenge I anticipate and I now also wonder if there is an iPad app that can help us with this.

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Yesterday, my favorite healing priest Fr. Fernando Suarez mentioned during his TV mass about pre-school education in Japan. According to him, the Japanese curriculum does not include regular exams for the pupils during first three years of their schooling with the rationale that it promotes unhealthy competition if imbibed at an early age.  But whether this information (about Japanese education) is factual or not, I think that every parent should take note of it.  I agree with Fr. Suarez when he said that more and more parents nowadays have been coaxing their children to win in contests that at some point it sends a wrong signal and value to the young minds—one that divides rather than unites especially without the appropriate guidance. So this school, I told my wife that we give Marcus some slack and besides it is what we did during the later part of his nursery education and guess what, he ended up the as the most improved pupil of his class.

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Mood: 2/10 Honks! (Stuffed toy and green ball just came out of the bedroom. He’s awake.)

Thank God, School’s Over

(Counterclockwise from top left.) Marcus and his awards; with mommy; cooling off at Pepper Lunch; Four Arms?

Classes are finally over as today starts Marcus’ official summer vacation. Yesterday we attended his school’s moving up ceremony wherein he brought home a couple of special awards for being the most neat and clean as well as the most improved nursery student.

So in the next two months new routines await of us. Besides his well-deserved break from books and stressful study sessions, it’s goodbye sleep deprivation for me due to driving and waiting for him at school–I skipped this for only a couple of days due to being sick; and it’s a big relief for wifey from worries if school uniforms have been pressed (or not) and if what food to prepare next for lunch, these among other things she need to take care of since class started in June last year.

Congrats Marcus! Congrats wifey, we made it. God is good.

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Mood: 2/10 Honks! (Can’t wait for our first summer outing.)