Tag Archives: family

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.

Local surfers and volunteers give children with autism the chance to experience the water

Autism Surfer
Thousands flocked to the beach for a day dedicated to children and their families who experience the day-to-day challenges of autism.

“We registered our limit of 200 participants from several different states in record time,” said Don Ryan, president of Surfers for Autism, Inc. “We registered 300 volunteers online and had another seventy-five show up today. Sixteen restaurants are catering today for free.”

“It’s fun,” said 9-year-old Mackenzie Herrick, who wasted no time getting back on the board every time she fell off. Standing up on the surfboard, she raised her arms in the air to celebrate as she rode a wave toward shore.

Read more…

Parental stress and autism: what’s effective at reducing it?

Raising children is an extremely rewarding experience. That’s not to say however that every minute of every day is spent with smiles and adoration for our offspring. Generally speaking the majority of parents I imagine though, would look favourably at the experience of going the family-way.

The rosy picture of having a family is however never truly complete without realising that having children can be quite a stressful experience. Whether as a result of those earliest days of sleep deprivation and almost constant diaper changing duties, through to some of the growing pains as puberty beckons and even onwards into the adult years, stress is a pretty constant companion to the family journey. Oh and also how many kids you’re parenting.

To have a child with additional needs, whether a physical disability or intellectual / developmental disorder, has been suggested to carry it’s own unique challenges which can also impact on parental stress levels. I’m not saying that, to somehow blame or stigmatise or anything like that, but merely to reflect the quite extensive body of research which has concentrated on that point.

There is also quite a large evidence base to suggest that parents report greater levels of stress associated with raising a child with an autism spectrum disorder. Indeed it is with this area in mind that I want to focus on “Stress-reducing interventions that are needed for parents and especially parents of children with autism”.

The question is: what kinds of stress-reducing interventions are available and more importantly, which ones work?

I don’t claim to have some special insight into these questions, but a quick Google of the research literature offers a few potentially important pointers.

Social support. “Oh, I get by…With a little help from my friends” was a song by the Beatles but also it is perhaps little surprise that through the wonders of social media and the Internet, on-line social support groups for parents of children with autism are numerous and easily accessible in our digital age. With all the talk about how such resources might be ‘changing our brains’ (erm, or not), I’m minded to say that in this example, it might actually be a change for the better.

Mindfulness. I know, I know. It sounds like psycho-babble mumbo-jumbo to the nth degree when you first hear it. But actually I’m becoming quite a fan of mindfulness. The basic idea is to think about the present, stay focus on the present, and manage the thoughts and feelings that are linked to stress. The evidence base for mindfulness for relieving caregiver stress is what might be described as emerging with some potential bonuses for offspring too. It’s worth pointing out that mindfulness techniques are seemingly also finding a role in helping some people on the autism spectrum as well.

Parent training. I must point out that I am in no way trying to say that anyone is in need of “training” just in case anyone thinks I am. I am merely referring to the body of literature which ‘suggests that there may be some merit in looking into this option with stress relief in mind. There are positives effects this has on parent stress levels. Training programs designed to teach parents ways to enhance their coping skills, relationship development skills, how to increase their social support networks, will collectively make changes in their environment that are critical to reducing parental stress.

Outside interests. a hobby or some type of external interest such as physical exercising, dancing, martial arts, etc. all serve several health benefits that are more than just for a physical purpose. Fun, self-esteem building, stress releasing are just a few.

Respite. I don’t think this needs much explanation. More respite care was associated with increased uplifts and reduced stress. Indeed, part of that reduction in stress was seemingly getting a little more quality time with your significant other. It can’t be stress enough how important respite care can be to some families.

I’ve only really scratched the surface on parental stress and autism and how one might go about tackling or reducing it. If you want a perspective from a parent living with autism who is also an author on autism, look no further than from these insights. Let us also not forget other siblings of the family unit too and how stress can affect them.

What remains apparent is that (a) parenting, as well as very rewarding, can be a stressful activity, (b) parenting a child with additional needs can carry some of its own unique stresses and (c) tackling or reducing that stress has got to be a win-win situation for everyone concerned; importantly not just for the child, but also for parents.

Dear Pamela,

Many thanks for the email and kind words. Please, by all means, use the post if it helps at all. Everything on my blog is published under a creative commons license meaning that dissemination is absolutely implied!

Good luck with your new venture and book.

Regards

Paul

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Paul Whiteley B.Sc(Hons) M.Phil. Ph.D

 

Obesity and Autism

Obesity and Autism | Photo: www.abc.net.auObesity has become a prevalent condition among children nowadays. In the same way, the sudden rise of autism has also been recorded at 1 in 68 children by the CDC.

More research suggests that obesity in children with Autism Spectrum Disorders (ASD) has also been rising over the years, and has been noted as high as that of developing children. This statistical data is quite staggering. Children with ASD are not only exposed to the same risk factors as that of typical developing children, they are also more susceptible and vulnerable to more adverse effects such as genetic issues, sleeping and eating disorders, physiological challenges, and so on. For all individuals with ASD, obesity poses a huge threat to their overall health and quality of life.

Likely Causes of Obesity to ASD

Three of the likely causes of obesity among children with ASD are genetics, delayed/impaired motor skills development, and psychopharmacological after-effects. Obesity in children with autism is biological in nature. Children with ASD born to parents with obese patterns are more susceptible to such growing up. Genetic determinants, however, are not specifically and fully identified.

The use of psychotropic medications is quite common among individuals with ASD, particularly to those who have severe symptoms. Medications such as stimulants, antidepressants, mood stabilizers, and antipsychotics are usually prescribed to individuals with Autism as well as to those with behavioral and developmental needs. Some 35% to 65% are prescribed with one of these medications while, approximately 10% are prescribed with more than 3 medications. These medications are often used not as a cure but as a means to control and manage the symptoms. Though known to be effective, these medications can result in weight gain as they increase appetite and lessen physical activity. In addition, metabolic syndrome such as raised blood pressure, insulin resistance or glucose intolerance, abdominal obesity, and many more are also noted to be caused by these medications among children with Autism.

Delayed or impaired motor development usually limits the physical activity among children with autism. Most kids with severe autism have sedentary behavior due to low muscle tone, postural instability, and motor-skills impairment. These conditions often lead to involvement in physical activities difficult as these children struggle for balance, endurance, and motor planning.

Other Risk Factors

Autism with obesity are known to be associated with other risk factors such as sleep issues, and picky eating. Difficulty falling asleep or staying asleep is quite common among children with ASD. Sleep issues usually affect appetite and metabolic functions leading to weight gain. Children with ASD are also known to be highly selective eaters and have the tendency to be indisposed to specific smells, colors, textures, temperatures, and so on. This “picky” eating routine leaves children to choose unhealthy foods and/or energy-dense foods which are often “more attractive” and much tastier than organic/fresh foods.

The Role of the Family

Most issues concerning dietary, sleep patterns, and physical activity are usually affected by family dynamics. Mealtime routines, feeding styles, and other parental practices relating to food and activities at home directly impact obesity clauses among children with ASD. By developing a healthy family environment and proper dietary management while infusing effective intervention, obesity among children with ASD can be prevented.

Cameron’s 8 today, full of life, full of confidence…

My son Cameron – laughter, tears, pain and fear come to mind when I think of him. He’s 8 today, full of life, full of confidence. But he wasn’t always that way.

Cameron was 18 mths when I first heard the word Autism. I knew he had some speech delays and was developmentally behind at that age, but the word Autism never entered my mind until spring of that year. I know the doctor was telling me all of her findings on that day and why she suspected my Cameron had Autism, but after that word, I blocked everything else out. I remember tears all of sudden rushing down my face and my husband leaning over to hug me and say everything was going to be ok. At that moment, I thought nothing would be the same again.

That fall my son was admitted into a preschool for children with Autism. I guess I am lucky that I live in a province that provides such a service. There was so much information given to me all at once my head was spinning. ABA therapy, schedules, occupational therapy, speech therapy, physical therapy. One mom can only handle so much. I really didn’t know what Autism meant other than what I had seen in movies. I remember having to ask a staff member at the pre-school to explain what was going on, what PDD-NOS meant. My husband tried to be supportive, but he had work etc. I had work also, but all of a sudden I remember reading up on everything about Autism and therapies was much more important.

It took almost 3 yrs of every type of therapy, naturapathy, me quitting my job to provide at home support for him, listening to every seminar, reading every Jenny McCarthy book on Autism to realize it’s not the end of the world. We were ok! Cameron was going to school, he could speak (although not well), he loved playing with kids, everyone adored him, he was funny and charming and everyone fell in love with his big brown eyes. And my marriage had survived.

I know quitting my job wasn’t the best decision, I was lucky I was able to do so and I had a husband who was there to support me in all my decisions. Cameron who is 8 now, has just entered grade 3. I have to admit the first year of school was an adjustment, not just for him, but for me. After spending every waking second learning, studying and living Autism, to have 6 hrs a day to myself was strange. He still receives help at school, and has an educational assistant in the class, but the boy he has become is amazing. He has never given up on trying, either with educational stuff or socially. I am proud of his hard work to overcome his disabilities!!