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Posts Tagged ‘Autism Awareness’

by Shannon Penrod

Well the verdict is in and I don’t agree.  James Durbin won’t be the winner of American Idol 2011 but there are some contests that are even more important than Idol and as a proud Autism Mom I know that James Durbin has already won them. 

James Durbin

Not to take anything away from the other contestants, I’m sure they have all overcome some adversity to get where they are, but I know first hand that it can’t compare to what James has surmounted.  He is a true champion.

He stood in tears at the end and proudly said that he had done what he had come to do.  I think that’s true, James, but I don’t think it was to give metal a chance.  Okay, maybe that was part of it, but you also gave a lot of us hope.  To watch you sing every week, to watch you own that stage lifted my heart and reminded me that all things are possible.  You helped me and thousands of other mothers remember that dreams don’t have to be deferred by Autism.  You were brilliant, and the “Autism thing” was incidental, a foot note…irrelevent…what a lovely gift. I thank you from the bottom of my heart.

James Durbin, you are my American Idol.  I will buy your records and I will go to your concerts and I will listen to metal.  Rock on my friend!

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Dear Mrs. Obama,

As one mother to another I would like to ask you a huge favor…could you please change your porch light to blue for this Friday and Saturday night?  You see, this Saturday is World Autism Awareness Day and all over the world people and institutions will be shining a light on Autism by finding ways to “Light it Up Blue.”  My family will be stringing blue LED lights onto our condo balcony, but I have to be honest, your home is much more visible to the world audience.  Your help and support would be so appreciated.

My son Jem is seven years old, just a little younger than your girls.  He is a bright little boy who still believes in Santa Claus and the Easter Bunny.  He loves LEGOs and anything to do with space or robots.  He is just one of the world’s children who is living with Autism.  He is my hero.  I would never ask you for myself, but I will ask you for my son and for all of the children who are affected with Autism, could you please send a message to the world by lighting your porch blue for two nights?

You can’t imagine what it would mean to the children.  Thank you in advance, Mrs. Obama for understanding the importance of this small gesture.

Sincerely,

Shannon Penrod
Jem Miller’s Mother

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My son was diagnosed with Autism 5 years ago.  At that time I tried to wrap my head around the fact that my life was going to be significantly different from how I had imagined it.  Instead of taking day trips to the zoo, learning how to ride a tricycle, or registering for T-ball my son and I were going to learning the ins and outs of intensive ABA therapy.  I attempted to accept it with grace; if it was what my son needed we were going to do it.   What I didn’t know, what I hadn’t counted on was that helping my son was only going to be half of my job.  The other half was to educate the world around him about Autism.  For me, this was harder, crueller than I could ever have imagined.

I remember in the early days of our Autism journey, standing in line with my son at the bank, or attempting to.  The man in front of me was not happy with me or my child.  My child was moaning, attempting to escape and intermittently rolling on the floor when I could no longer restrain him.  The longer the wait, the worse the behavior, and I was worn out.  The man kept turning around and giving me dirty looks.  I wanted to cry… for all of us.

It’s not easy to listen to a child moan for twenty minutes while standing in line.  I know this all too well.  But I knew that in 20 minutes the man would be able to walk away.  I wouldn’t be walking away and I needed him to at least understand.  So…I picked my son up off the floor for the 100th time and began to talk loudly to him.  I told him what a good job we was doing.  The man in front of me hrumphed with derision.  I continued, I loudly told my son how difficult it is to stand in line, how frustrating it is, that I too would like to cry and lay on the floor.  I told my son that it was hard for adults so I couldn’t imagine how hard is must be for a little boy with Autism.  I told him that I knew he was just trying to make sense of a world around him that was full of too many colors, too many noises; a foreign world where he couldn’t speak the language or understand it.  I told him I knew that he was scared, but that mommy would never leave him; that I would always be patient, even when it was hard because that’s what he deserved.  I watched as the man’s shoulders changed shape in front of me.  Eventually he turned and looked at me offering a silent sheepish apology with his eyes.

I cried the whole way home that day because I knew it wouldn’t be the only time a stranger would look at my son and make a judgement based on ignorance.  I thought about how hard my child was going to have to work in order to do things that most of us take for granted, like being be able to look at someone and say, “Hello.” And the kicker?  If he worked tirelessly to accomplish this, for him, heroic deed his reward would a simple, “Hello.” back.  The respondent would have no idea how hard-won the exchange had been.

Five years later, I continue to be shocked by what the world does not know about Autism.  People tend to have an image in their heads of what they think Autism is and they tend to apply that to anyone who has Autism.  Unfortunately, this is tragically inappropriate.  Autism presents differently in everyone it affects.  There are some children who can’t bear to be touched, others who need frequent touches in order to stay calm and focused.  Shockingly there are still some people who think Autism is not real and simply a function of bad parenting.  Ignorance is bliss apparently, but it can’t last long.  As more and more children are diagnosed in epidemic proportions it is only a matter of time before such ignorance is faced with the stark reality of truth.  If Autism does not currently touch your life, it will soon.  Statistics promise it.  I wish it weren’t true.  Everyday I pray that brilliant unbiased minds continue to search for all of the potential causes.  While they do that I continue to plod along doing my job, trying to make a world where my son and children like him are seen for the true heroes they are.

World Autism Awareness Day is April 2nd this year.  On that day I hope you will participate.

Things you can do to raise Autism awareness on April 2nd:

Wear blue all day

Changing your porch lights to blue for the evenings of April 1 and 2

Make your FaceBook Profile picture blue!

Donate to Autism Speaks or ACT Today!(They currently have an initiative to help children with Autism whose parents serve in the military)

Show compassion when you see children and adults with behavioral issues.

Visit Autism Votes to find out how you can urge your representatives to further insurance reform so Autism treatments will be covered in every state.

Urge the school administrators in your area to participate in Skills for America to receive grants to help educate children with Autism.

Ask questions…there may not be an answer, but if we keep asking the questions the answers will come.

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By Shannon Penrod

I have a seven year old who is recovering from Autism.  “Recovering from Autism”  this is the phrase that my husband and I adopted about nine months into our journey through Autism.  I didn’t want to call him “autistic”, it sounded final, it sounded harsh, it didn’t honor his spirit.  Like a lot of families we chose to say that “he has autism.”  It’s the truth and it pays homage to the fact that there is more to this little boy than just this one thing.  It was better, but it wasn’t enough.  I love words and I whole heartedly believe in the power of them.  I believe what you think becomes what you say, which becomes what you do and together they comprise how you experience the world.  I wanted to say something that would help our entire family to experience our journey through Autism with dignity and hope, so we began to say that Jem was recovering or actively recovering from Autism.  And yes, the decision to capitalize the “A” is a choice too.  If you live with this in your home you know that it warrants a capital “A”.

Okay, I know I will get mail from adults with Asperger’s and High Functioning Autism who will tell me that Autism is not something you need to recover from.  They like who they are and how they are.  They are offended that there is even talk about needing to recover from Autism. What’s to recover from? Hear me when I say – That is not the Autism I am referring to.  If you can read a blog, get offended by it, and feel the need to respond to it, then you aren’t being held back by Autism.  Unfortunately that isn’t everyone’s story.   My entire goal has been to recover my son from the “Autism” that didn’t allow him to speak, didn’t allow him to communicate or understand the world around him.  I am not trying to remove what is essentially him, his way of looking at the world, his interesting and unique way of seeing things…I prize those things.  I am fighting for him to be able to communicate those things to the world, the way that I see people with Aspergers and High Functioning Autism do.  Imagine the tragedy if Temple Grandin’s mother had not worked tirelessly to help Temple to communicate with the world!  What a tremendous loss.  When I speak of recovering this is what I am referring to.

I don’t know what causes Autism, but five years in there are many things that I do know.

1. It isn’t just Autism, it is Autisms.  Two children can both have a diagnosis and display vastly different symptoms.  If you know one child with Autism you should not assume that other children will be like them.

2.  In the wide range of Autisms there are many people who lead wonderful, productive happy lives.  On the opposite end of the spectrum there are children and adults who are incapable of connecting or communicating at all with the world around them. In between these two groups is where the vast majority of people with Autism fall, individuals who fight on a daily basis to communicate – to understand and to be understood. 

3. There is help for those who want and need it.  In some cases there is even recovery.

4. My personal definition of “Recovery from Autism”? – removing the obstacles which prevent a person from being able to communicate substantively with the world around them, so they can freely interact within the community of their choice.

Simply put, I don’t want “Autism” to stop my son from doing what ever he wants.  If he wants to be friends with a little boy he just met at the playground, I want him to be able to without “Autism” tripping him up.  If he wants to go to MIT and study rocket science, I don’t want stinky old “Autism” to gum up the works.  I want him to be who he is, but who he  is, is not his diagnosis. 

Daily we fight the part of Autism that takes him away from us.  We also fight the perceptions of the world about what they think Autism is and how they think my son should behave.  At the end of the day I don’t have a lot of fight left in me to defend my choice of words.  My son is recovering from Autism, everyday he gets closer to being someone who will walk through the world being able to do what ever he wants.  I’m good with that.

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by Shannon Penrod

People ask me almost every day what the warning signs of Autism are.  I can be on the phone with my credit card company and as soon as they know that I do a radio show about Autism or that I am a mom of a child recovering from Autism they start asking about symptoms.  Waitresses ask me, people in line at Disneyland ask me, friends of friends call me – they all have the same question – How do you know when to be worried?  It’s a really good question.  And while there is no easy answer, there are some guidelines that can help you to know whether you should seek out a qualified medical opinion.

It’s important to note that if you have concerns you should talk to your Doctor as soon as possible.  Early intervention is one of the most important keys to helping children with autism  lead happy and successful lives.  So if you have concerns, don’t hesitate to get a qualified opinion.

Here are some symptoms that can be warning signs for Autism and should warrant a discussion with a qualified physician.  Not everyone who displays these symptoms will have Autism, but theses symptoms need to be addressed.

1. A child  over the age of a year displays little of no eye contact.

If your child cannot make eye contact or struggles to make and keep eye contact they should be seen immediately.

2. The child shows a delay or lack of speech for their age.  By one year of age they should be cooing, by 16 months they should be able to use at least one word to identify an object and by two years of age they should be  able to use two words together without repeating what someone else has said.    If the child is not demonstrating these skills they should be seen immediately.

3. The child does not respond appropriately to social cues.  The child  does not respond when you call their name, they show no interest in playing, they do not point at things to show  you something, they do not wave good-bye etc. these are all symptoms that require further inquiry.

4. The child loses any skill at any age.  If a child is talking and stops talking, or even if their language seems to diminish this is a cause for immediate concern.

I can not say enough that it is best to follow your instincts.  If  you feel that there is a disconnect in communication with your child take them to a qualified physician who can recognize the signs of Autism.  I keep saying “qualified” because the vast majority of parents that I meet with a child on the Autism Spectrum report that at least one doctor told them everything was okay before they were ultimately diagnosed with Autism.  That was certainly our case.  Because our son was speaking in full sentences I stopped worrying about Autism.  Then when his language began to slowly deteriorate my concern spiked.  Our pediatrician patted my hand and told me I was overreacting, that our son would soon be speaking in paragraphs.  She was wrong and we lost six months.  By the time our son was diagnosed he was considered non-verbal and we had lost more than six months of precious time when he could have been gaining skills instead of losing them.

Make sure that your pediatrician is knowledgeable and if you aren’t sure don’t waste time – get a second opinion.  Remember that time is of the essence when diagnosing Autism.

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By Shannon Penrod

You’ve probably heard of  six degrees of separation, the idea that supposes that we are all only six people away from anyone on earth.  I prefer the expression of being only “three phone calls away from the president”.  This is great party conversation, “Which one of your friends would you call first if you needed to get to the president in only three phone calls?”  It’s one of those riddles that can keep you up late at night.  Who would you call?  It’s a fun little brain teaser and for most of us not something we need to actually attempt.  But the other day in what can only be described as an “I love Lucy moment of clarity” I had an idea, an idea that refuses to go away.   I find myself in the unique position of needing to figure out who my three phone calls are – but not to the President, to the  First Lady!

I am a Mom, more poignantly I am an “Autism Mom”.  I am one of the millions of Moms around the globe who wakes up every morning and immediately steps on to the front lines of the war against Autism.  I am one of the lucky Moms, because in my home we are winning the battle.  I say that with pride, jubilation and guilt because I know that there are Mom’s all over this wonderful country who haven’t had access to our miracle.  Even worse,  there are people all over the world who don’t know what is possible when it comes to treating Autism.  They don’t even know what to ask for. 

Those of us who have seen the return of our children, who have seen the progress that is nothing short of miraculous, know that a change must come.  We know that schools are desperate for information that can change the face of Autism.  We know that it’s possible to rescue our children, we just need the right person to see it and believe it with us.  I believe that person is Michelle Obama.

So I had my “Lucy” moment and thought – “Invite the First Lady to see what’s possible!”  And I instantly knew where I want to take her. The Center for Autism and Related Disorders is celebrating its 20th Anniversary this year.  As part of a celebration of 20 years of research and recovery there will be a gala event in Los Angeles on September 25th.  It is now my personal goal to get Michelle Obama to willingly attend this event so she can see first hand what is possible when we give our children with Autism what they need.  Of course the President is welcome as well, but I believe that a woman with a fire in her belly is capable of anything and that is who I believe Michelle Obama to be.

Now I only have one problem!  Who are my three phone calls?  I never thought I would have to do this for real!  I definitely need some help.  If you know someone who knows someone…be one of my phone calls and help me to persuade the First Lady to attend this important event!

I frequently think of how polio was viewed in my mother’s childhood  versus today.  I hope that someday we can look back at Autism and think of it as something that a different generation had to cope with.  Wouldn’t that be remarkable? 

Shannon Penrod is the host of the weekly radio show Everyday Autism Miracles on www.toginet.com  Free podcasts of the show can be downloaded on the show page www.toginet.com/shows/everydayautismmiracles or on iTunes

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by Shannon Penrod

In case you didn’t know April is Autism Awareness Month.  For me every month is Autism Awareness Month, because I am one of the millions of parents worldwide who is raising a child with an autism diagnosis.  It’s an interesting  journey that is frequently made tougher by a lack of information among the public.  So here are the five things I wish everyone knew about Autism:

1.  One size does not fit all with Autism.  In fact, it is better to think of it as “Autisms” instead of “Autism”.  Children on the Autism Spectrum have a wide variety of symptoms, sensitivities and capabilities.  Try not to assume that the label Autism means they are capable or incapable of doing anything.  Some children with Autism can’t bear to be touched, others require frequent touching to stay engaged.  Don’t assume, ask questions and be willing to look at those diagnosed with Autism as individuals with individual needs.

2. Autism is not the result of bad parenting.  I’m sorry I even have to say that, but I do.  There are still people who think that Autism is caused by bad parenting, it’s not.  However, it is true that superlative parenting, via ABA Therapy is helpful in diminishing or eradicating  Autism behaviors. Currently most insurance companies don’t pay for ABA Therapy, even with the new Health Care Bill, which is why it is so important that individual states pass legislation to make insurance companies accountable.

3. Autism is treatable and in some cases it is possible to recover from Autism.  There have been countless cases of children diagnosed with Autism at an early age who, after extensive early intervention, later tested as being neurotypical.  There are video tapes of many of these children that clearly show autistic behaviors at an early age and their progress has been scientifically documented.  It’s not a rumor, a false hope, snake oil or urban legend.  There is hope and studies clearly show that the earlier the intervention the greater the possibilities in outcome.  So if you have or know a child that you have concerns about you should not take a “wait and see” approach.

4. It is no longer politically correct to refer to children as being “Autistic”, the correct term is that they “have Autism” or “have an Autism Spectrum Diagnosis”.  You can even say that they are “on the Spectrum”. Stop and consider that we would never refer to a child with Cerebral Palsy as “Palsic”, or a child with Leukemia as “Leukimic”, we simply say they have the disorder, it should be the same with Autism.

5.  Children on the Autism Spectrum and their parents need your help.  There are charities raising money for research and to fund treatments, if you can give generously.  I highly recommend Autism Speaks and ACT Today.  If you know a child with Autism, ask the family what kind of assistance they could use.  It could be something as simple as a regular play date that could make a difference in a child’s life.  These children are worth the effort, please offer them what you can.

Shannon Penrod is the host of Everyday Autism Miracles on Toginet Radio.  The live talk radio show airs every Friday at 2pm EST on www.toginet.com  Free Podcasts of the shows can be downloaded at www.toginet.com/shows/everydayautismmiracles and on iTunes.

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