Finding Meaning When You Have A Child With Autism

King Retorter is not sure exactly what to think about, Finding Meaning When You Have A Child With Autism. Interesting and great writing for sure.

Finding Meaning When You Have A Child With Autism

As a parent of a child on the autism spectrum there are days we can become so exhausted, so beaten down by the challenges that come along with the awesome responsibility of raising a child with autism that we invariably ask, if even for a moment,”Why me?”

Sure our public face may be one of the eternal optimist as we celebrate our child’s strengths and request that others do the same. The bottom line is that you reach the limit of your ability to give far more freqently and more quickly than other parents.

I’ll be flat out honest with you because that’s why you read what I write. I have days when I silently say, “Dammit, I wish my mind would just work the way I want it to!” That doesn’t mean I want to be someone different. It speaks more to those moments when I loose perspective on what being a parent and being on the spectrum is about.

What Is It All About?

For one thing, it isn’t about simply avoiding meltdowns, arguing with teachers and managing the latest crisis.

It isn’t about resigning yourself to the fact that your child is “different.”

And it sure as hell isn’t about accepting a life that involves feeling burnt out all the time.

If you feel that your life will inevitably no longer be yours because you have a child on the spectrum then it’s time to wake up and smell the helplessness you’ve bought in to. Life is meant to be experienced not endured, survived or suffered through. The person who said, “Life’s a bitch and then you die” clearly did more bitching than learning.

Now I’m by no means a religious person but I do go out of my way to find meaning in my life experiences, no matter how horrible they may seem at the time. I say, at the time, because perception is everything. The choices that have brought you to this moment in your life, and your beliefs about what options life has for you are not written in stone.

This isn’t as good as it gets unless you’ve decided a full life as a parent with a child on the spectrum is beyond you.

I have had nonverbal people on the autism spectrum using a talking board ask me to explain why this happened to them. I’ve had parents ask me when their child will grow out of this. To respond to them with, “I don’t know” is an unacceptable answer to me. I prefer, “Well let’s see if we can figure this out.”

More @ http://spectrummentor.com/2011/04/28/meaning-life-autism/

Top 30 Autism Facebook Fan Pages: Most supportive, most informative + more

Top 30 Autism Facebook Fan Pages: Most supportive, most informative + more

Autism Play Therapy

5 Steps To Getting Started With Play Therapy | Friendship Circle -- Special Needs Blog

After going through the process of diagnosis for a child with special needs, many parents are overwhelmed by the cost of private therapy and treatment. Then there’s the difficulty of scheduling therapies, and for some children, the trauma of separation from the parent during therapy.

What if there was a therapy that could be done at home for free? What if there was a therapy that strengthens the bond between parent and child while also encouraging the child’s emerging independence? What if there was a type of therapy broad enough to assist with all types of special needs, but flexible enough to be tailored to a child’s specific goals in physical or occupational therapy, speech or social skills, sensory integration or emotional regulation? It would be perfect if such a therapy was also demonstrated to be effective in decades of scientific studies, right?

Well, you’re in luck. With these five steps you can get started on play therapy today.

AUTISM and ZUMBA

YouTube - ZUMBA & Autism. Must Watch!

10 Ways YOU Can Help a Family Living with Autism « Lisa Ackerman – Real Help Now

10 Ways YOU Can Help a Family Living with Autism « Lisa Ackerman – Real Help Now

10 Ways YOU can help a family living with autism

(Start today by forwarding this blog with a personal note: “Your family is important to me. How can I help you?”)

Children’s activities sure can keep you on the go! Like other moms, I spend countless hours each week driving my kid back and forth, juggling between my responsibilities and getting him where he needs to go. Every parent I know is committed to making sure their child is participating in activities that will help them grow into a well-rounded adult equipped to live a productive and happy life. Parents will run themselves ragged to help their child succeed in the present and prepare for the future. In that way I am like all those other mothers and fathers.

But there the similarities end. While many of my friends are driving their kids to basketball practice, music lessons, cheer tryouts or science camp, I (and other parents of children with autism) am taking my kid to therapy sessions, follow up doctor’s appointments, medical evaluations, IEP and school district meetings. Very little of this process seems normal and it often feels incredibly isolating.

Typically, when a child “makes” the team or joins a group, they are welcomed into a busy new community. Kids bond and cheer each other on. Parents make new friends, arrange carpools, plan fundraisers and attend games or performances. For many of our kids in the autism world, there are no teammates cheering your kid on at the doctor’s office. No parents sitting by your side in the school office while you fight for your child’s right to educational support.

We all knew having children would be a life changer. Having a child with autism is something altogether different. Families living with autism fight time from sun up to sun down – there is just never enough time. Because of the developmental nature of autism, parents feel a sense of urgency to help our children achieve as many gains as possible to maximize their chances for a healthy future. So we continue to squeeze in more therapies, more interventions, and more evaluations. Like all parents, we fight for time in our daily and weekly schedules. But unlike most parents, we are also fighting against an unrelenting developmental clock.

If you have a friend or family member affected by autism, you often know they are struggling but don’t know how to help. The greatest gift you can give is you. Remind them often: I’m here and I care. Whether the autism diagnosis came yesterday or ten years ago, we need to know we are not alone. Here are some ideas on how you can make a difference for families with special needs children.

What the Fuck is wrong with Canada?

Canada bars autistic teen

The federal government has barred 17-year-old Lewis Crowe, who lives with his mother in England, from living in Canada because he has autism. Furthermore, he cannot visit the country without the permission of the immigration department.

Stranger still is his father and stepmother, Robert and Pauline Crowe, are "inadmissible" as permanent residents because of Lewis's disability.

Read more: http://www.ottawacitizen.com/health/Canada+bars+autistic+teen/4680415/story.html#ixzz1Kp9rRoOZ

Social Skills at Home, Advantage of Non-Autism Siblings

Teaching Social Skills at Home | Washington Times Communities

SILVER SPRING, Md., April 25, 2011 — It's 8:45 p.m. and my son Jack and his little brother are supposed to be asleep in the bedroom they share, stacked in bunk beds one atop the other. They, however, are wide awake and chatting with each other.

The mom in me thinks I should march in there, separate them and threaten them to within an inch of their lives if they don't fall asleep right this very minute!

The autism mom in me, however, is delighted. I can't tell what they're chatting about—if I had to guess, I would wager that it is a conversation about a complicated video game mission that the two of them are creating in their minds—but I don't really care.

They're talking. One speaks, then the other follows up with a related sentence, and it continues for as long as I listen. It's not really that big of a deal, unless learning how to hold a conversation is not something that comes naturally to your child.

This is the advantage I have in parenting a child with autism who has both an older and a younger brother. Social skills never stops at my house.

There have been many times when my family is out and about somewhere, and my three kids are running around like the little chaos machines that they are, and I think, "Wow, this would be so much easier with fewer children." But then I stop and think, "No, really having three kids makes life so much easier." And that's not just because they play with each other instead of hassling me to play Candy Land.

My parenting goal when it comes to my children is that I want to make them a unit. I want them to be able to count on each other and be each others' best friends. I want their brotherhood to be one of their strongest, life-long bonds.

YouTube - 赴一场星儿之约（三）·Hisoing《关爱总动员》·

YouTube - 赴一场星儿之约（三）·Hisoing《关爱总动员》·

关爱对象：华抿（雪隆）自闭症辅导协会自闭症儿童关爱大使：翁书尉One FM主持人翁书尉（Nicholas）献出与自闭儿童（又称"星儿"）的农场两天一夜初体验！翁书尉参与Hisoing《关爱总动员》节目，担任第2集的关爱大使，带领8位One FM的幸运听众，与华抿（雪隆）自闭症辅导协会的7位自闭症儿童前往居銮UK Farm休闲农场度过周末。 第三集，经过了一整个白天的相处，保母与自闭孩子数落了起来。当了晚上的表演环节，自闭孩子在保母的陪伴下上台表演，有的跳舞、有的唱歌，还有的弹琴，孩子们独树一帜的才艺表演，带给台下的观众许多欢乐。其中，冠军得主林谦行表演的《Black or White》更是让人看得赞叹不已呢！ 隔天醒来，大家依然兴致勃勃，参观了迷你动物园以及进行射箭活动，对于射箭小朋友们虽然显得生疏及胆怯，仍然在保母的带领下，放手一试，勇气值得大家学习哦！ 欲知更多有关华抿（雪隆）自闭症辅导协会的详情，请浏览www.autism.org.my或电邮至hmas@autism.org.my或致电+603-7958 7385。

Autism Schedules Rule

Fox Valley parents discuss challenges of raising a child with autism | Appleton Post Crescent | postcrescent.com

APPLETON — In the Meulemans household, schedules rule.

Most schedules are taped to cabinets in the family's downstairs therapy room, but they are prominently displayed on the kitchen refrigerator as well.

The schedules chart weekend and weekday routines, including when the bell will ring to signal the start and end of classes at Appleton's Janet Berry Elementary School, plus recess and lunch in between. There also are bus schedules and therapy times for the kids to check.

"Our family can't function without them," said Becky Meulemans, chief schedule keeper and mom to Clayton, 8, Gavin, 7, and Maddox, 6, three lively sons with autism, a neurological developmental disorder characterized by communication and social issues.

Meulemans' day-to-day challenges are nothing new to Fox Valley mothers Lisa Robbins and Becky Kostopolus, who also have sons who have been diagnosed with autism. The three women shared some of challenges they face in raising children with autism recently, given that April is National Autism Awareness Month.

They hope the more people understand their children's disorder, the greater the public's compassion and acceptance will be for people across the autism spectrum.

Autism is hard to comprehend for those who haven't walked in these parents' shoes because it is almost a hidden disability, said Peggy Bartman, member of the Autism Society of the Fox Valley Board and an autism consultant for Cooperative Educational Services Agency 6.

All children can be difficult, Bartman said, "But these kids can be particularly wearing kids. They require a high degree of adult supervision, a high degree of structure."

Autism in Canada: Canada has NO SHAME???

Facing Autism in New Brunswick: Canadian Autism Shame: Canada Bars Autistic Teen From Permanent Resident Status

Canada has, to its shame and dishonor, refused to include evidence based effective treatment for autism in the universal Medicare, our public national health care scheme, that it offers to all Canadians thereby excluding 1 in 110 autistic Canadian children from receiving a fundamental benefit of our society. Now it has extended that shameful treatment to autistic citizens of other nations, and even some of his family members, who would like to visit and reside in Canada.

'I've learned to accept my brother's autism and want to help' | Life & Style

'I've learned to accept my brother's autism and want to help' | Life & Style

Coping with an autistic child is challenging for any family. For Bella Tommey, growing up with her brother Billy meant missing out on "all those things other people take for granted" after he was diagnosed with the disorder at the age of two.

"We couldn't go to Sainsbury's without him having a fit and I couldn't even go shopping with my mum because she'd have to look after Billy," explains the 16-year-old. "We couldn't just hang out as a family."

Having a sibling with special needs has not left Bella feeling resentful or cheated though.

Instead, it has been the inspiration for Give Autism a Chance, her campaign to find jobs for people like her 14-year-old brother. Its supporters include 1,500 Facebook fans and even David Cameron, who invited Bella to No 10.

New Autism WTF on blogtalkradio.com Today! - Big Daddy Autism

New Autism WTF on blogtalkradio.com Today! - Big Daddy Autism

State-by-State Advocacy Advice

State-by-State Advocacy Advice

Act Locally: Often, people write in the comments or the forum or directly in emails to me, looking for information or help with special-education issues in their state. Since services vary widely across the US, I generally direct them to a parent advocacy center in their vicinity where they can talk to someone who knows the ins and outs of services where they live. I'd like to create a resource here on this site, though, that would give parents some local advice and tell them where to look for more.

Treatment of Melatonin Dysfunction in Children With Autism Shows Improvement in Sleep... -- MELBOURNE, Fla., April 26, 2011 /PRNewswire/ --

Treatment of Melatonin Dysfunction in Children With Autism Shows Improvement in Sleep... -- MELBOURNE, Fla., April 26, 2011 /PRNewswire/ --

MELBOURNE, Fla., April 26, 2011 /PRNewswire/ -- The current prevalence of autism spectrum disorder is alarmingly high. Although there is no cure for autism, it is possible to manage and treat the comorbid medical conditions associated with autism. One of these conditions, sleeping disturbance, can be challenging to treat. A new study published in Developmental Medicine and Child Neurology by Dr. Daniel Rossignol (International Child Development Resource Center, Melbourne, FL) and Dr. Richard Frye (University of Texas), sheds some light on sleep problems in children with autism and treatment of this problem.

These investigators found that, in general, children with autism had abnormally low levels of the hormone melatonin, a hormone that is necessary for the regulation and maintenance of sleep. The review points out that although investigators have identified some children with autism with genetic problems in producing melatonin, the number of children with this problem was very low. Importantly, the investigators identified 18 studies of melatonin treatment in autism, with 5 studies comparing melatonin to a placebo, and found that melatonin improved several aspects of sleep in the placebo-controlled studies. Specifically, melatonin significantly increased sleep duration by an average of 73 minutes compared to baseline and lowered the amount of time it took for the children to fall asleep by 66 minutes compared to baseline. Melatonin was well tolerated by most children and side effects were minimal.

One intriguing finding of the review was that some studies reported better daytime behavior in some children with autism when they took melatonin at night. "This was not surprising," states Dr. Rossignol, "when children sleep better at night, their behavior is usually better in the daytime. These findings are important because something as simple as a nutritional supplement could greatly improve both the lives of the children and their parents." Dr. Frye adds, "Our article provides evidence for dysfunction for an important metabolic pathway in autism spectrum disorder, the melatonin pathway, and further demonstrates that appropriate treatment to correct dysfunction of this pathway can be helpful to improving sleep and daytime behavior in children with autism. Hopefully, further studies can identify defects in pathways that can be easily corrected just like the melatonin pathway."

SOURCE Dr. Daniel Rossignol

PBS 'NewsHour' shines spotlight on efforts of Bronx Autism school

PBS 'NewsHour' shines spotlight on efforts of Bronx Autism school

A Bronx school for children with autism stars on television tonight.

A PBS "NewsHour" segment at 7 p.m. features Public School 176X in Co-op City. It serves nearly 700 children with the disorder.

Part of a "NewsHour" series on autism hosted by legendary news anchor Robert MacNeil, the segment compares PS 176X with a small charter school in Manhattan that boasts one teacher for every student.

It also looks at the heart-wrenching impacts of the disorder on parents, such as Jesse Mojica, education director for Borough President Ruben Diaz Jr., and grandparents, like MacNeil.

"So often, we parents feel powerless to help," Mojica said yesterday. His son has attended PS176X.

Read more: http://www.nydailynews.com/ny_local/bronx/2011/04/21/2011-04-21_autisms_challenge_heroic_efforts_of_bronx_school_focus_of_tv_show.html#ixzz1KXwfNV82

Autism Elopement Study: Preliminary Findings

Autism Elopement Study: Preliminary Findings

reviews | Special Needs Kids Go Pharm-Free

reviews | Special Needs Kids Go Pharm-Free

Library Journal recommends it, and mom bloggers are loving Special Needs Kids Go Pharm-Free. See why with their reviews below. Click to listen to an author interview with It’s Your Health Network.

Sandra Frank, Ed D, RD, LDN says author and dietitian Judy Converse’s work “…is very much needed and ground breaking in the field of dietetics.” See why Special Needs Kids Go Pharm Free and Special Needs Kids Eat Right topped Dr. Frank’s Dietitian’s On Line blog on World Autism Awareness Day for 2011.

Food Sensitivity Journal: “If I were master of the universe, I would make sure every pediatrician and every new parent has access to this book.”

Top 25 Autism Spectrum Blogs-Lost and Tired

Top 25 Autism Spectrum Blogs-Lost and Tired

We listed 25, but we’d love to hear which other autism blogs are your favorite. Nominate or vote for your favorite unmentioned autism blog here and help to spread their word!

Recovery vs Neurodiversity - Why Can't We Accept Both? | BlogHer

Recovery vs Neurodiversity - Why Can't We Accept Both? | BlogHer

Not long after my son Josh was officially diagnosed, I joined a few online support groups - for parents of special needs and autistic children. What I discovered much to my shock and disappointment, was that belonging to these groups was actually doing more damage to me emotionally/psychologically than good because of the vehemence with which people would argue their beliefs - it wasn't enough for anyone to simply say, this is how I feel, or not, it was apparently necessary to make those who didn't share those beliefs feel like the worst people on the face of the earth. I'm not just talking about the vaccine issue, it also happened and still happens, regarding treatments and therapies. So I simply stopped participating and have made it somewhat of a self-imposed rule that I don't get in to those issues any more, particularly on my blog.

Adventures in Autism: Robert MacNeil Will Be On CNN will be on CNN at 7:50am Tomorrow

Adventures in Autism: Robert MacNeil Will Be On CNN will be on CNN at 7:50am Tomorrow

Johns Hopkins Reports More Children Have Inflammatory Bowel Disease - AGE OF AUTISM

Johns Hopkins Reports More Children Have Inflammatory Bowel Disease - AGE OF AUTISM

From Johns Hopkins University. We know a population that suffers from severe GI problems still mislabeled "autistic behavior." And we know a few brave doctors trying to help.

March 28, 2011
-Delays in Diagnosis Common

Once a medical rarity in children, inflammatory bowel disease today is increasingly common in kids, but many of them may not be diagnosed in a timely manner, according to experts from the Pediatric Inflammatory Bowel Disease Center at Johns Hopkins Children’s.

Gastroenterologists there say that many of the hundreds of children they see were referred to them only after months of repeated visits to their primary-care physicians for symptoms mistakenly attributed to common GI ailments like viral gastritis.

“Inflammatory bowel disease is still considered an adult condition and is rarely on pediatricians’ radars,” says Maria Oliva-Hemker, M.D., chief of the Gastroenterology & Nutrition division at Hopkins Children’s and director of the comprehensive IBD center there. “Fifty years ago, IBD was almost exclusively diagnosed in adults. These days, treating children with IBD is business as usual in our clinics.”

Having Both Autism and Epilepsy Linked to Raised Death Rates - US News and World Report

Having Both Autism and Epilepsy Linked to Raised Death Rates - US News and World Report

FRIDAY, April 15 (HealthDay News) -- People with both autism and epilepsy have a much higher death rate than those with autism alone, a new study finds.

Researchers examined brain tissue donated to the Autism Speaks Autism Tissue Program, and found that 39 percent of the donors with autism also had epilepsy, which is significantly higher than the estimated rate of epilepsy among the general autism population.

The study authors also examined data from the California State Department of Developmental Services, and found that people with both autism and epilepsy have an 800 percent higher death rate than those with autism alone.

The findings are published in the April 15 issue of the Journal of Child Neurology.

Adventures in Autism: PBS Newshour: Robert MacNeil Shares his Grandson's Story

Adventures in Autism: PBS Newshour: Robert MacNeil Shares his Grandson's Story

Deer must be heartbroken today to see the piece, and realize that the grandson of the esteemed MacNeil was diagnosed by the well respected Harvard pediatric neurologist Tim Buie, with "Lymphoid Nodular Hyperplasia"... which Deer claims does not exist. And to see it all airing on PBS.

Scientists Discover "Thunder" Protein -May potentially result in new treatments for autism

Scientists Discover "Thunder" Protein -May potentially result in new treatments for autism

Susan Senator on Successful Stims and Making Sense of Autism

Susan Senator on Successful Stims and Making Sense of Autism

Now I always listen, hungrily, for the silly talk -- not so silly now, is it? -- and I offer a word or two to him, to guess at what he's thinking. I am showing him, one word at a time, that he is just fine, that he can talk any way he needs to. That he can do it, and it will be okay! I try to let him see -- because I know he trusts me -- that there is power for him in uttering even just one (non-silly) word.