Category: Blog

Is There Really A Cure For Autism and Do We Want To Have It?

John Graduation 2016
John Graduation 2016

Our youngest John finally made it! He graduated high school with a bang. With over $400k in therapy since he was two years old, he was able to came out as a nonverbal child to a grade 12 graduate with a full diploma! Yes, we did it! WE DID IT! I feel like shouting these words over and over again. I am so proud and elated for his future that I sobbed like a baby. His soothing words of “It’s okay, Mama” had made all the difference in this world.

So, if I am asked today on whether I am interested about a cure for autism? Not anymore. At some point when he was two until he was like 6 or 7, I was hoping that someone brilliant will suddenly just come on national television announcing that they finally found the real cause of autism or have discovered some drugs that will untangle the brain of each and every child with autism in the universe. Yes, I had hoped before. In fact, I prayed a thousand times for it so my son can have more of everything.

But you see, year after year, I am given every reason to believe that John is perfect as he is. Amid all the struggles that all of us had went through, we were able to rise up the occasion and raised a sweet and thoughtful young man who sees more goodness and kindness in others more than he sees in himself.

Compassionate, this is the perfect word for my son John. He knows when I feel down and agitated. He knows when to give you a pat in the back without even you blurting any word of what’s bottling inside you. It’s like he can see through you and, without judgment or whatsoever, he simply understands. He recognizes his but never complains about them. He is aware of his frailties but smile head on even when the whole world is frowning upon him.

Enjoying his graduation cake
Enjoying his graduation cake

As an autism parent, I know there are others out there who are still trying to unravel their children’s condition. Some of them are, perhaps, hoping that a magic vial will be available soon to relieve them from the constant anxiety and frustrations often common in households with autism kids.

Trust me, the frustrations will always sneak up on you every now and then. It will haunt you and make you feel so down it feels like you will never stand tall and proud again. But it is up to you to let such feeling gnaw at your being. It is up to you to let others get into your skin. Your child, your most precious one maybe different from the rest but he is yours and yours alone. He is a gift that needs to be cherished.

So, if you ask me if I am interested in a cure. Stop it already! I may still not be satisfied in the success that John enjoyed today because I know he can do better in the future, I am confident in my skin that I have raised a good son—autism and all. There is no amount of cure that will change him. He is exceptional as he is and for that, I am forever thankful to the Heavens above.

How about you? What’s your autism story? Share your thoughts with us. Feel free also to visit our Facebook and Twitter pages. We’d love to hear from you.

Autism Burnout: Do You Have It?

when autism gets the best out of you

 Summer is finally here. With no school to distract the kids, many moms out there must have their hands full. Without a doubt, parenting is an extremely challenging experience. It’s a round-the-clock job with little or no time for vacation or relaxation. Add autism to the equation and you are certainly in for the long haul. Though, many autism moms have learned to adjust their sails for a smooth journey, there will always be that time of the year when things go awry leading to—burnout.

Burnout can get the best out of people. With a to-do-list that rivals that of an online Encarta, mommies (as well as daddies, too!) can easily succumb to the bittersweet temptation of exhaustion—beyond reasonable doubt. Things just simply came crashing down on you and the stress piles up like laundry on a soccer game week.

You feel drained, like all your energy is snapped out of you.

Wait, is it fibromyalgia? A bad case of guilt-tripping? What disease is this?

No! It’s just your inner self screaming for a few hours of nothingness, of not being needed, of being left alone, of being yourself.

Burnout is a tangible experience. It makes you feel exhausted, drained beyond relief. It makes things seem irritating and icky. You’re losing sleep. You feel like crying but no tears come out of your eyes. It’s a phase and you know it’s a phase but you’re just not up to anything.

When things do go crashing down for me, I pray. I ask for guidance, for enlightenment. I would rise before anyone else at home and leave my mind blank for a while as if in meditation but without the chanting and everything else. I feel the moment. I take in everything that’s within my surroundings as if harnessing all the energy I can get.

After an hour or so of simply engrossing myself in my aloneness, I think of all the good things that happened within the week. I let them envelope me in a fierce hug. I think of the depressing things and then, I let them be expelled from my system.

I look at my autism advocacy. I think about how far I’ve come. I contemplate on what more I can give for others, for awareness, for acceptance.

Yes, I talk to myself as if a separate entity. It’s a refreshing feeling to let loose of inhibitions and the guilt, of having no expectations, of the stressors gnawing at your being. When it feels like the world is crashing down, I seek out help without being too clingy.

I don’t ignore what I feel. Ignoring your feelings will bring you nowhere. When autism hits you straight in the gut, you embrace it. You feel it. You work around it!

Get outside and engage others. Have a good laugh. Go on a vacation together. Go on one, alone. What is something you love to do? Do just that! Who usually makes you happy or giddy with excitement? Call them. Hug them when they’re near. Let them know, you are here and sometimes, you need someone to tell yourself not to act too strong, that you also have a day’s pass to be weak and vulnerable.

Burnout from autism is a real deal. It doesn’t hurt to ask for help. Do not wait for things to blow out of proportion before you act on it. Get on with it—now!

Got any tips on how to handle burnout with autism? Write to me at pamela@livingautismnow.com. Your inputs will be greatly appreciated by autism parents across the globe. Check out our Facebook and Twitter for more updates.

Photo Credits: Keeper of the Home

Of Prom, Adulthood and A Whole Lot More Ahead of Autism

John with Greer, PROM 2016,  such a happy day!
John with Greer, PROM 2016, such a happy day!

One of the great rites of passage in parenting is when your child with autism gets to have that one special night to wear a tux and spend a ton of a good time — Senior Prom! John in his tux and shiny formal shoes looked so debonair—and his bestfriend Greer Allen coming over from NB made the event even more special. They were so happy together and I felt like weeping due to unparalleled joy. As a matter of fact, I had fun along with Greer’s Mom while driving John and Greer in the Brighton, ON town Prom parade.  It was a fantastic day and one that all of us will never forget.

Along with this happiness comes that sigh of relief, that amid all the trials and tribulations that we’ve been through year after year, we have truly done it. We survived high school. It is, indeed, a moment of spectacular fête but one that’s tinged with the bittersweet realization that his ordeal with, as many autism parents dread, adulthood is beginning.

The word “adulthood” seems so far away last year or even a few months ago. Each morning as I take a sip on my favorite cup of Joe, I look in earnest at the glassy lake from my kitchen windowsill remembering how that one day some 15 years ago had me almost bawling out in frustration and utter desolation. It is not easy being told that your son, your bundle of joy, will never have a so-called “normal life” and that going to college (or even to school) may be impossible for him.

Yes, year after year, a series of uncertainties usually blurted out by others to parents with children on the spectrum often put me on my toes. There are even times when you feel like lashing out your irritation on how some people can be brutal and apathetic to our plight. But like many autism parents out there, I always remind myself to get hold of my bearings noting the fact that how I grapple with such situations will largely determine my child’s future.

There is some truth on awareness slowly building up hence, lifting ignorance out of others. Acceptance, however, is a different thing. It was not easy making people veer away from their comfort zone, from the so-called “norm.” Everything is never easy.

So, here we are at a crossroads once again, an exciting prospect nonetheless. We have talked about him learning more about being a pâtissier. He loves making pastries so, we’ll start from there. There are other things running on his mind, too. One by one, we will help him unravel his destiny.

But for now, I am letting him bask in his happiness as he indulged in the remnants of his spectacular senior prom, autism and all worries set aside.

The Discombobulating World of Autism Research

Photo Credits: Creating Brighter Futures _ Autism Research
Photo Credits: Creating Brighter Futures

It is my daily ritual to sift through various autism research, news and blogs articles to be posted on my social media accounts and, I couldn’t help but marvel at the degree of enthusiasm the medical community has placed in unraveling the cause, origins and what-have-you of Autism. Some even make “color” classifications due to the enormity of the whole spectrum. With one neuroimaging after another, truly the dissection level of Autism Spectrum Disorders (ASD) comes incomparable.

Causes of autism have piled up over the years. First, there’s the “coldness” of a mother’s heart smothering the baby’s sensory impulses leading him to have autism all his life. Then comes the genetic factor only to be left for further research due to inconclusive evidence. Environmental elements have also been targeted like pollution, insecticides, GMO, and so on. Others focus pregnancy-related issues like C-section, drinking folate, and other observations. Recently, there’s also the issue of circumcision among male kids with autism.

Who doesn’t know the vaccine-autism controversy that will forever hound communities across the globe? It is a never-ending debate causing unnecessary rifts among advocates and communities. Even top personalities join in the fray to stress a point creating a fissure among the pro and anti vaxxers.

Far more than this, researchers from top universities across nations had continuously put their focus on dissecting the human brain to look for that teeny-weeny speck of difference between a child with autism and that of a so-called neurotypical kid. Recently, neural pathways of children with autism are being monitored under a microscope to help find answers on the why’s and why not of autism.

Yes, each day when I sift through these autism research articles I am becoming more discombobulated with the emerging causes being thrown my way. Sometimes, it feels a little bit crazy for me to laugh until my insides hurt so much from frustrations over these studies which, as always, are deemed “inconclusive” and needs further research – and each research pierces my heart particularly when kids with autism are always placed in a microscope only to be compared to neurotypicals.

I have no beef with all these autism research, studies, surveys, and so on.  To my understanding, there are parents and families out there who are still groping in the dark for answers and, perhaps, by reading through those explorations and investigations, they will find peace and acceptance in their midst.  So, I’m cool with that hence, I will continue to share them on people’s newsfeeds. This is in the hope that somewhere, somehow some families can heave a sigh of relief.

John making awesome apple pies
John making awesome apple pies

As for me, I have long accepted John as he is. He’ll be turning 18 soon and will technically be an adult. Instead of looking for answers that have eluded me for the last 15 years or so, I am more grounded to the belief that there is a much higher reason on why he has autism. Today, my main concern is ensconced on his future, as an adult – a thriving one at that. With this also comes that fervent hope for more services, workshops, and opportunities to open up for adults on the spectrum noting the fact that we, parents, won’t be around forever.

For now, I will allow myself to be discombobulated with all these autism research clippings. Some days, it just felt so great to have a good laugh until you can’t stop tears from flowing in your eyes.

Adult, Autism and Living On His Own

Me and John
Me and John

 

Each year, we are given statistics on how many hundreds of millions have been spent on autism research. I am happy about that. Yes, so happy for families who up to this time are still groping in the dark on what ifs and what could have been. Though some of the published are downright absurd, I am still grateful for the thought. The sad thing about these studies, however, is that out of the hundreds of millions of dollars, only 1 percent of that is allotted to studying autism in adults.

Every April, the drive for raising autism awareness and, along with it, to raise funds for research also becomes one of the most anticipated events in a full calendar year. Various heritage buildings and attractions joined the Light It Up Blue Campaign. Many are going to runs and walks—and dinner for a cause, sporting events, and so on.  The list is endless.

But as I scroll through all the studies done, I cannot help but feel mixed emotions over the state that adult autism is in. Not that I don’t like the research on finding the cause or exploring new treatments, finding a way to diagnose autism, the biology or anatomy of autism, and so on. I am however, worried about the decline on the attention given to adults with autism.

John at Universal Studio’s
John at Universal Studio’s

You see, my son John is turning 18 soon. He will legally be called an adult. Basically, when a child with autism grows to be an adult, the support that they enjoy can be taken away. But far beyond the thought of not being able to get free services, I am scared most of inclusion.

Will he be accepted in college? Or will he make it to college? Can I leave him to fend for himself? Will he make friends? Will they understand him, accommodate him, understand his “uniqueness”? Adults with autism have always existed. Most of them, however, are left out of school, the neighborhoods become wary of them. Some workplace are accommodating but there are others.. well, I just cringe at the thought.

So, it is my hope that there will be a solid support as well as research on how to address the issue on adult autism. For years, we have seen how they are institutionalized, marginalized, or, worst, abused. Beyond health concerns, these people also desire to go to college, to work and to pursue a hobby. Some may even want to pursue relationships and determine their own life’s course. They are actually just like neurotypical people. They also want to belong—and I fervently wish that they be given a chance to be in a world where everyone can co-exist without question or judgment.

Staycation Ideas for A Busy Autism Mommy

Photo Credits: www.gobankingrates.com/
Photo Credits: www.gobankingrates.com/

Summer is just around the corner and, along with the exhilarating view of sun and blooms, comes this certain longing to sit back and enjoy watching the setting sun as you languidly enjoy a pitcher full of lemonade. If the thought of traveling to a tropical destination is out of the question, the idea of creating the perfect “staycation” experience for you to unwind must have crossed your mind—but how?

You Deserve a Time Out

Put the world on hold even just for a day. As an autism mom, much of your time is focused on schedules, schedules, and more schedules. Try to find much-needed help and eliminate this sense of hectic-ness even for just a day. A local caregiver can stand on your behalf while you simply sit back and relax in a nearby salon or spa. Do not wear a watch for this particular day and enjoy it to the hilt. Do not check your email (unless your life depends on it) and leave an out of office message. Steer clear of social media (highly recommended!). Do inform the caretaker where you’re going at and with whom, just in case something urgent comes up.

Bring the Destination to You

Craving for a gelato but there is no way you can fly to Italy? Lobster and crabs? Bring your favorite destination home with you. Whether it is a local delicacy you crave or salsa-dancing, learn to improvise to achieve this. Scour the neighborhood to satisfy your vacation food cravings. Some online shops can make this happen for you. If it is dancing ala summer solstice in Asia you want, pop a CD when all the children are asleep, and dance to your heart’s content. Let your imagination run wild. This is one way to combat the usual life-sucking stress autism moms often experience on a daily basis.

Full House Cleaning

Cleaning your home might be long overdue and what best time to do it today. Let your place shine once more. Bring in new flowers, make the beds look brand new, and restore order in your home. One best thing about cleaning is that you are also exercising at the same time. Think about the amount of sweat you will pour out by simply changing the curtains or cleaning the tub.

Rekindle Romance

Parents to children on the spectrum are often overwhelmed with the responsibility that comes with it. Even in what we perceive as typical parenting, couples have the tendency to lose a sense of intimacy as the years go by. This should not be the case if you learn the trick of balancing your time. Every now and then, set the mood to rekindling romance between you and your partner. Prepare a candlelight dinner and let your child with autism help in the preparation. Play a memorable melody to a whimsical evening. Offer a massage, if you may. Let your senses go.

Got a great staycation idea? Write to us HERE or follow LivingAutismNow on Twitter,

Of Autism and Employment – Preparing Your Child For Life

Photo Credits: Deal With Autism
Photo Credits: Deal With Autism

It is without any hint of doubt that finding employment nowadays can be an overwhelming task and, so much more so, when you have autism. Social acceptance has long been an issue with autism. Embarking on a career while carrying such stigma will definitely put your child’s chances of finding what suits him best — as well as one that will help develop his capabilities – in a backseat. Amid the many hindrances, however, it is important to take note that many companies these days are finding “gold” among those in the spectrum. To give your child a competitive advantage, here are some tips that may come handy to his career-building path.

Train While Young

Transitioning to adulthood can invoke both fear and uncertainty among parents to teens with autism. You might be wondering whether he can manage without you or whether he can thrive in a workplace alongside “neurotypical” individuals, or whether he will be able to drive or live on his own. As such, it is imperative to start them while they are still young.

Start training your child the earliest time possible on how to live independently. As individuals with autism function distinctively and at different levels, you need to ensure that the degree of care and training allotted to him must be adequate to his level. Define his needs carefully with the aid of professionals and/or trained carers by painstakingly considering what makes him happy, by tapping his strengths and by identifying his weaknesses and finding what skills are needed to overcome them.

This is where creative thinking comes in—and you will need a lot of help to accomplish this. Plan carefully and find a suitable network or partner to undertake this lengthy and challenging process. Attend seminars, conferences, and trainings. This is also where you need to tweak your dreams for your child to best match what is deemed possible for his level of functioning.

Recognize Your Child’s Passion

Have this mindset — This. Is. Not. About. You.  You can’t force your son or daughter to be something that which he or she has no interest of. Some autistics love numbers and algorithms, computers, gadgets, and so on. Others lean on gardening, handiworks, community service—the list is endless. One thing for sure is that each child with autism has a certain eccentricity that is entirely his own.  From childhood to adolescence to adulthood, this passion will become evident and more reflective of his personality. Make sure to tap this passion and turn this into an opportunity for him to thrive on.

Reach Out

Once your child has successfully transitioned to adulthood, he might most likely encounter a blank wall. He might find employment disheartening as the number of opportunities is limited. Luckily, there are various job trainings for those with special needs nowadays which can help increase their chances of landing a job. Reach out to your community to find one for your child. There are also online resources which cater to people with disability in finding job trainings, placement, and pertinent services to assist them in their search for a thriving employment.

Giving your child a future amid his or her autism should not fall on other people’s laps. Do not let certain limitations hamper your desire to give him or her much brighter future. Some people, professionals even, may tell you otherwise but hey, miracles do happen if you pray and work had for it. Many companies have opened to the idea of autism in the workplace and this gives our children an opportunity that they shouldn’t miss.

Vaccine Caused My Son’s Autism But That’s Just Me

Vaccine Caused My Son’s Autism But That’s Just Me
Photo Credits: Your Presence Heals

Someone asked me if vaccines can cause autism and I said yes. But that’s just my personal observation as a mother to a child with autism. After John received his MMR shots, the once vivacious boy almost immediately became prone to tantrums. We could not call it a meltdown then, thinking that it could just be because he’s a toddler and prone to that. Then, the banging of the head began and the hair pulling and rocking back and forth. Until one day, all the light that used to shine in his eyes was gone, extinguished to oblivion— as well as all his verbal communications completely disappeared.

Having been gone through a string of difficulties with my eldest son’s Tourette’s, I really thought I could not make it through with John’s diagnosis. There came a time that amid all the signs, I would tell myself that perhaps, the vaccine will be flushed from his system and he will be back to being a precocious little lad who always sports a smile. But two, three weeks passed then, a month, two, and then, the head-banging, constant body rocking and aloofness set in.

That’s when I realized that something is terribly wrong. At that time, I felt that the vaccine triggered John’s autism, that he had a negative response, just like he was “rewired” by the vaccine. I strongly believe this still. As a Mom, it was the most painful thing to see our son being transformed into something he had no say in. I castigated myself for having him take that shot. But that was 15 years ago. Who would have thought that such a routine vaccination could change our lives, forever.

When John was diagnosed with autism, the doctor’s cannot answer what caused it. There were already a lot of speculations about the health risk of MMR to young kids years ago but, it was (as always) debunked by the medical community as a farce. Vaccine means safety. No vaccine can cause an outbreak, a breach in the economy, an imbalance.

Truly, there are a lot of findings, observations, researches, and what-have-you debunking the link on vaccines and autism—and I totally understand it. There are also countless autism families who also believe that vaccines DO NOT cause autism—and I totally understand it, too. But as a Mom to a son with autism, I am firmly resolved that that vaccine played a significant role in my son’s autism—and I know this may cause a lot of opposing reactions but..

I am not asking anyone to follow my convictions. Your life story, as it seems, is definitely not the same as mine, in the same way as every autism case is unique.

I am not asking anyone not to get a vaccine. You should know what is right for your child. My only obligation is to my own.

I am not asking anyone to believe me. I just felt that I needed to take a stand as I have grown tired hearing and reading this endless debate on the vaccine-autism link.

Again, I am firm in my resolve that my son’s autism is caused— triggered or what you may call it— by a vaccine but, that’s just me. I am not asking you to believe me nor am I fetching your opinion on my personal issues.

This is what I believed in so, I hope you can stop debunking my belief. I respect the expertise on both sides of this argument and I do hope you can also respect my belief as a mother who carried her child with all the love in the world.

What is Winter to Autism?

What is Winter to Autism
Photo Credits: http://thegrid.soup.io/post/312834604/Child-Photography-by-Elena-Shumilova

To many people, winter is making Christmas wish list, of Santa Claus and his reindeers, of frolicking in the snow with friends and family or of drinking a mug of sensational chocolate. To some autism parents and children, however, this is a dreadful time of the year when the days are growing shorter and the night colder and darker. Some call it the “winter blues.” I call it “meltdown magnet.”

Yes, as many people await the celebration of Christmas and New Year, many autism families are also getting ready for the long haul ahead. Cloudy and cold days can easily run kids with autism’s emotional and psychological battery. Depression and anxiety easily gets into them as the cold swirls around Canada and neighboring states.

One of the scientific reasons behind this contention is that during winter, a child’s (whether autistic or not) melatonin and serotonin level can be disrupted. Lack of daylight put photoreceptors which stimulate the production of serotonin as well as cortisol at a standstill. It also affects the pineal gland’s overproduction of the sleep hormone, melatonin. These two conditions often result in lack of energy, mood swings, poor or erratic impulse control, depression, anxiety, and sleep problems. To kids with autism, this could mean meltdowns in epic proportions.

What to Do?

Preparation is always the key to autism families. Every change of season, kids with autism are virtually prepped on what to expect for the dreary days ahead as well as in understanding the concept of Christmas and gift-giving, and why we celebrate the New Year, Thanksgiving as well as Halloween. Holidays can be such a struggle to these kids as their senses can go on haywire with all the festivities that these occasions bring. Keeping them informed with visuals especially videos will be useful but still, it is important to be always on guard especially when out and about.

This is also a time to engage in physical exercise to some. Not only will exercise keep the mood light, it helps relieve stress and anxiety, two of the most common meltdown triggers. Kids with autism love to wander and discover things that interest them. A morning walk around the block or in the part—with you (you may even bring his or her service dog, if you have one) can be of great help. To some, phototherapy and mind-body therapies like yoga, body massage, and guided imagery can also help keep the blues away. Some also resort to prescription anti-depressants. But before you engage on this, make sure to consult with your doctor beforehand.

Somewhere Sunny

In our case, we often bring John to somewhere sunny during this time of the year. Last time, we opted to do some cruising on board the Independence of the Seas. John loves to cruise. The sun, ship activities and water adventures made him less agitated. I also see to it that his room gets as much light as possible. Drapes and curtains are replaced with a much lighter shade. Luckily, he also loved the smell of chamomile or lavender which is very relaxing. The chamomile tea for John, however, is not that successful.

Indeed, in all these it is important to always plan ahead. Autism leans on repetitions and familiarity. Taking steps the earliest time possible will help keep the triggers at bay. A quick check with your son’s or daughter’s holidays.

Autism Needs To Be Studied, Heard, Accepted – Epidemic or Not!

Autism Needs To Be Studied, Heard, Accepted - Epidemic or Not!
Photo Credits: https://www.psychologytoday.com/blog/the-superhuman-mind/201310/the-left-hemisphere-hypothesis-autism

I have noticed recently that my inbox is flooded with reports, studies, research and what-have-you concerning the growing rate of autism. Most of these studies are out to debunk the idea that this pervasive developmental disorder is not an “epidemic”. It just so happens that diagnoses nowadays are more reliable and efficient to the point of being advanced. Children as young as a few months can even be diagnosed using tech-savvy systems never before imagined.

But what do these reports and studies are really trying to expose? Are these people helping the autism communities who are struggling to meet their autistic kids’ needs for better services? Let’s say there is some truth to autism not an epidemic, now what? Can they show us the underlying cause of the disorder? Do they have foolproof treatment that can completely cure these children and adults who, in their daily lives, are struggling to be accepted in a society that is so easy to shun away from the not-so-ordinary?

I have nothing against reports and studies like this but when it offers nothing but yet, another dead-end, that’s when I get really disappointed. We need more experts and professionals who can clearly draw the line on what causes the disorder and how it can be either prevented or cured. If there is no cure, present us with new alternative treatment then. When one presents a problem, a solution is always necessary. Saying that it is not an epidemic amid the increasing rate of children being diagnosed and, offering no clue whatsoever on how it came to be is truly disturbing.

There are so many things going on with autism. From vaccines to diabetes to environmental concerns, the list of possible causes can make one’s head spin. Add to the pile the seemingly worsening state of accepting such disorder as something commonplace in the society. Yesterday, I was reading this news about a man who was targeted just because he has autism and, it broke my heart into tiny little pieces. I cannot fathom what the family must have felt to hear such horrible findings from the police. I have no strength to grasp such an idea if it happens to my son.

We are at a crossroads where autism is indeed increasing at a steady and alarming rate. Many nations have also opened its doors in recognizing that such a disorder has become a rampant issue and with these individuals safety at stake, a collective effort must be done to guarantee that they be studied, understood, and embraced.

Saying that it should not be a cause of worry because it is not considered an epidemic is akin to telling people that “It’s okay to swim as there is only a single shark in the water.” Epidemic or not, experts should double their efforts in finding answers instead of throwing more questions. Instead of sending us mixed signals, perhaps, it is high time for them to gather their heads together and help solve this baffling disorder. Enlighten us, pretty please. This cloak of mystery can sometimes feel suffocating.