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Welcome to Holland

I read this poem today and hope that it touches our readers.  You can also “view” a video of the poem below…  Hope you all enjoy Holland!

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Welcome To Holland
by
Emily Perl Kingsley
c1987 by Emily Perl Kingsley. All rights reserved.

… I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Apple Cinnamon Spice Energy Tea (for parents)

Dear Friends-

With Fall upon us, I thought a fun and healthy Energy Tea for those of us caring for children and adults on the Autism Spectrum would be fun!  We actually recently gave the teachers at our children’s school Energy tea, as a gift.  It is a yummy way to gain energy, while getting healthy.  the link to the product is in the recipe or can be found at www.autism.myshaklee.com.  Enjoy!

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Apple Cinnamon Spice Energy Tea


Apple Cinnamon Spice Energy Tea

Ingredients:

1 stick Cinch Energy Tea Mix

6 oz. hot water

2 tbsp. unsweetened apple juice

1 tsp. orange juice

Dash of cinnamon

Directions:

Heat water and mix with one stick of Energy Tea Mix unsweetened. Add apple juice, orange juice, and cinnamon. Stir and sip.

Nutrition Information:

Calories: 22 Protein: 0g Carbohydrate: 4g Fat: 0g Fiber: 0g

 

autism.myshaklee.com is owned and supported by ASDPerspectives.  Please feel free to contact us for input of supplements for your child or yourself.

TACA Indiana Presentation

TACA (Talk About Curing Autism) is an organization that believes that we must TALK About the possibilities if it can ever become a reality.  This is a national Organization that has local meeting all across the country.  To find a chapter in your area, go to www.tacanow.org.

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INDIANA CHAPTER MEETING

How Compounding Pharmacies Can Help Your Child With Autism

Wednesday,           September 28, 2011
7:00 – 9:00 PM, with speaker(s) starting at 7:15 PM
1291 N Airport Pky
Greenwood, IN 46143
Driving             Directions

Speaker: Scott Popyk, RPh MBA FIACP

Come learn about what compounding pharmacies can do to help your child.  What is the difference between a traditional pharmacy and a compounding pharmacy?You will learn what the major differences are between compounding and traditional pharmacies, what are the two critical things to know when selecting a compounding pharmacy and how a good compounding pharmacy can improve the treatment of autism.

Read more about Scott Popyk here.

Why get a diagnosis for Autism?

Some people will read this title and nod their heads.  Others will look at it and shake their heads.  Either way, the topic is a hot one and one worth re-visiting.

I often talk with families who tell me that they know their child is on the autism spectrum or suspect their child is; however, they do not want him/her “labeled”.  I put that in quotes because it is clearly seen as a dirty word and to some degree, I do understand why.  As parents, especially those of us in our 30’s and above, we have memories of the “special” kids who we occasionally saw in the hallway and nowhere else.  We envision those children being our children and, in fact, labeled.  We do not want our children “tracked” to go nowhere.

When I work with families as an Autism Advocate, both diagnosed and undiagnosed, they leave with a variety of options.  Our goal is for them to leave knowing what path they want to follow and the ability to help their child irregardless of their choices for diagnosis.  Having said that, I would like to argue that without proper diagnosis, we cannot get our children the help they really need.  Our daughter, the first to be diagnosed with PDDnos and on the spectrum, received her formal diagnosis at 5 years old.  Up to that point, she received various therapies through first steps and private insurance.  However, at 5 years old, her needs were great and the 20 visits a year, for OT, that the insurance allowed was no longer going to be acceptable.  As her parents, we could not meet her needs.  As a school, though we had her in a private Montessori, they could not meet her needs.  The public school system said she was too smart and they could not meet her sensory needs.  And insurance, would not meet her needs.  Diagnosis became crucial.

The Americans With Disabilities Acts, along with Special Education Law and perhaps various laws in your State, protect your child, with a diagnosis from being discriminated against.  Your child is entitled to receive the best education and care.  Autism is a nuerobiomedical condition that affects the brain as just one aspect.  When we realize that autism is a medical diagnosis, not a psychological diagnosis, we then realize that our children can be helped.  However, no doctor will treat a child for cancer without a diagnosis, or for strep throat without a diagnosis.  Our children with Autism deserve the care that they need.  If you are at the point where you have exhausted the care you can get for your child without diagnosis, or you feel they could get more with diagnosis, I encourage you to look at that road.

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At ASDPerspectives, we go alongside families to help them on the journey to healing.  Please contact us to learn more about our services.  Autism is a Journey that No Family Should Have to Walk Alone.

Gluten Free/ Casein Free Diets (GF/CF diet)

The Gluten Free/ Casein Free diet has once again come up as a topic on our ASDPerspectives Fan Page so we thought it might be time to revisit this topic.  As I share in chapter 4 of , “Healing Autism Naturally,” the GF/CF diet is a good place to start when you are trying to heal your child’s immune system.  Why is this?

Both gluten and casein are protein found, respectively, in wheat and dairy.  These proteins are very long and hard for the body to digest.  Many people, and especially people on the autism spectrum, have trouble digesting these proteins… even when they are not technically allergic.  We go intot he technicalities of why this is in the book, but for the sake of simplicity, when the body cannot properly digest a food, it can cause all kinds of symptoms, which include…

  • constipation or diahrea
  • swollem abdomen
  • lethargy
  • the feeling of going crazy
  • symptoms of malnutrition (the villi are blunted preventing other nutrients from absorbing).

This is just to name a few.  While many doctors will admit that their patients ont he autism spectrum often have digestive issues, western medicine has yet to actually acknowledge the direct link.  Perhaps many doctors recognize that children with autism have poor diets (a symptom that food hurts), and assume this is the reason for digestive symptoms.  Yet, they are not getting the root of the cause which is that our children do not digest properly.

Accrding to the Autism Research Institute, www.autism.com, about 60% families report noticeable differences when they remove gluten and casein fromt he diet.  Both must be removed at the same time.  If you choose to ease in, that’s okay; however, you cannot start the time clock for determining if the diet will work until the child is completely Gf/cf.  I recommend doing so for atleast 8 weeks before making a determination as to whether this works for your child.  Gluten can take 3 weeks to completely get out of the system and dairy, longer.  Therefore, a few days will not be enough to make a determination.

For more on this topic, check out www.healingautismnaturally.com  The book can also be found in paperback and Kindle on Amazon.com

Sail On, Sail On, Sail On…

Hopefully, as the school year is getting to a start, changes are being made in your schedules and life is abuzz, you are doing well.  For families on the autism spectrum, change is not usually met without difficulty.  Many children do not do well with change and that is even more true for us.  Having said that, we press on because we have hope, belief and faith that these transitions can open up doors for our children and our families.

We have 5 children and homeschool our oldest, whom is 11 years old.  Today we cracked open our English book and ventured on a new journey.  The opening poem, about perseverance, I believe rings true for our families, also.  And so with that, I leave you with this poem.  I KNOW the light at the end is brighter, bigger and more than we could ever imagine.

Columbus

by Joaquin Miller

 

BEHIND him lay the gray Azores,
Behind the Gates of Hercules;
Before him not the ghost of shores,
Before him only shoreless seas.

The good mate said: “Now must we pray,
For lo! the very stars are gone.
Brave Admiral, speak, what shall I say?”
“Why, say, ‘Sail on! sail on! and on!’”

“My men grow mutinous day by day;
My men grow ghastly wan and weak.”
The stout mate thought of home; a spray
Of salt wave washed his swarthy cheek.

“What shall I say, brave Admiral, say,
If we sight naught but seas at dawn?”
“Why, you shall say at break of day,
‘Sail on! sail on! sail on! and on!’”

They sailed and sailed, as winds might blow,
Until at last the blanched mate said:
“Why, now not even God would know
Should I and all my men fall dead.

These very winds forget their way,
For God from these dread seas is gone.
Now speak, brave Admiral, speak and say”—
He said: “Sail on! sail on! and on!”

They sailed. They sailed. Then spake the mate:
“This mad sea shows his teeth to-night.
He curls his lip, he lies in wait,
With lifted teeth, as if to bite!

Brave Admiral, say but one good word:
What shall we do when hope is gone?”
The words leapt like a leaping sword:
“Sail on! sail on! sail on! and on!”

Then, pale and worn, he kept his deck,
And peered through darkness. Ah, that night
Of all dark nights! And then a speck—
A light! A light! A light! A light!

It grew, a starlit flag unfurled!
It grew to be Time’s burst of dawn.
He gained a world; he gave that world
Its grandest lesson: “On! sail on!”

 

The beginning of a new school year- with autism…

I received an e-mail today, from the principal at the Catholic school where my 9 year old will attend this year.  Now, you need to understand that this child had to be taught to walk and talk and has attended at ABA school for the past two years.  A year and a half ago, she could not read- at all- and was too overwhelmed to be a classroom with more that 4 or 5 children.  But in one week she will attend private school, all day, with minimal accomadations, AT Grade Level.  I could not be more excited for her.

So, I received an e-mail from the principal, after they tested her last week, that she would be in 4th grade for almost all subjects and they would simply split grade her for a couple classes.  They can’t wait to have her and she can’t wait to have them.

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So this is to all the parents out there, who go day to day, not seeing the milestones…. not seeing the strides… wondering if their child will ever make it in this world.  Keep doing what you are doing!  Whether your child simply learns to type, “I love you,” or learns to ride a bike or ends up solving all the political battles, one day, that hold our kids back….  you are making a very big difference for your children.

I wish each of you a wonderful start to another year full of joy, tears, blessings and prayers… little steps and giant ones and most of all, I wish you those quiet moments when you can look back and know that YOU are making a difference.

 

 

Autism Advocates

As many of you know, we have 5 beautiful children, three of whom are on the autism spectrum.  We are not rare in that 1 in 91 children are now considered to be on the autism spectrum.  We are also not rare in that many families have more than one child on the autism spectrum.  And, I will go one step further and say that we do not believe that I am not rare in that I will do ANYTHING necessary to reclaim our children.

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It was about 8 years ago, when our third daughter was just 9 months old, that we realized something was not right.  She had been our healthiest pregnancy and nursed better than any of our other children, yet she was failing to make her milestones.  By 10 months old, she was screaming everyday in pain, from digestive issues.  While she would not be formally diagnosed on the autism spectrum for several years, we set on a coarse to help heal what we simply believed to be digestive issues.  As a nutrition consultant, that much I could handle.

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Autism, however, stumped me.  I had done childcare for a child with autism, as a college student, but the diagnosis for our daughter left me numb and screaming, “Where is my manual?  Where is my guidebook?  What do you mean there is nothing you OR I can do?”  I am a fixer by nature.  More than anything, it really hit me that so many families were battling the day by day battle ground that we know as autism with NO guidance.  I have all kinds of beliefs, now, on why that guidance is NOT there and not coming anytime soon from the government or the medical community; however, that is a book that has already been written by others.  (Read them all!)

Out of this frustration, came a determination, on our part (my wonderful husband, Chris and myself) to help families (and the medical community), help children with autism.  Over the past few months, we have be laying the ground work for an Autism Advocacy Program that will enable us to take the programs we do for families and train other advocates to do the same.  Ideally, we are looking for parents who have a child on the autism spectrum, have had a diagnosis for at least one year and who believe that children and families can begin or continue to heal.  We are very committed to keeping families intact and empowering families to break down the doors that we know as autism.

If you or someone you know are interested in learning more about becoming an Autism Consultant/ Advocate, we would love to hear from you.  Please drop us a note at www.asdperspectives.com to get on our information list for our next conference call, info session or to set up a personal time to talk.   If you are a parent and would like more information about consulting, please feel free to contact us, also.

Difficult transitions….

My 6 year old is an interesting child.  She can be the sweetest child one moment and the meanest the next.  The fact of the matter is that she cannot handle change…

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It took us quite awhile to figure out exactly what was going on with her.  She would walk up to strangers in an airport and pinch them… slam doors on people coming to visit after our youngest was born and has the most interesting love/ hate relationship with people who have any meaning to her.  We actually have to warn sitters that she will hate them when they arrive and hate them when they leave, but be their best friend every minute that they are at our home.

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Clearly this is a difficulty for people who love her the most, like aunts, grandparents and even babysitters.  We have found that the best way to handle this issue is to prepare people who come into our home.  I am always amused at the people who simply try to tell her that she is being unkind.  Please don’t misunderstand.  Of coarse we tell her that she needs to be kind and try to help her adapt; however, what she really needs is time.  After all, as an adult, I do not necessarily like situations that I consider threatening.  For our daughter, she has an even bigger issue.  At 16 months old, she was diagnosed with Juvenile Diabetes.  In a matter of hours, she went from complete security to a world of needles, insulin, doctors and hospitals.  She never really quite knows whether someone is coming to hurt her or love her…

Over the years, we have made progress.  She no longer pinches strangers, hits friends and can better regulate her reactions to others.  We can once again have guests over for birthday parties and most of our sitters and family are now prepared for the greetings and goodbyes.  I imagine this will continue to be a process as she gets older and look forward to the day we can look back at this and laugh.

How do you handle change and trust for your child?  We would love to hear your techniques.

New Study on Environmental Links to Autism Doesn't go far Enough

As scientists try to determine which environmental factors may lead to autism, they are paying closer attention to what happens to fetuses in utero, researchers say.

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Such factors play a larger role than genetics in causing the disorder, according to a new study from researchers at the University of California, San Francisco, and Stanford.

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Source: The Bay Citizen

Okay, so as a mother of children on the autism spectrum and professional working with families, I don’t even know how to respond to this.  I am grateful that scientists are finally getting on board with the fact that “bad moms” did not cause all of this; however, I am left mystified as to why it is taking so long to get to this point.  More importantly, I am wondering how long it will take the government to admit the findings and to go to the next step.

Parents all over the world know that bad genes did not all of a sudden wreak havoc on an entire generation of babies.   Something other than genetics had to be in the mix.

This article, in the Bay Citizen, goes on to quote,

“Autism had been thought to be the most heritable of all neurodevelopmental disorders, with a few small twin studies suggesting a 90 percent link,” said Neil Risch, a UCSF geneticist who is the director of the UCSF Institute for Human Genetics and one of the co-authors of the paper in a statement. “It turns out the genetic component still plays an important role, but in our study, it was overshadowed by the environmental factors shared by twins.”

I love that statement, “it turns out … it was overshadowed by the envirnmental factors…”

Meanwhile 1 in 91 children are now diagnosed on the autism spectrum and I did not see a new public statement made by the Federal Health Regulators based on this or any other study.  My reaction to this article may sound harsh; however, these finding are not new.  Organizations such as the Autism Research Institute have been doing research for decades showing that environmental toxins such as medications, heavy metals, ingredients in vaccines and other factors are playing a huge role in autism.  These organizations and their doctors have been labeled crazy.  In fact, doctors such as Andrew Wakefield in Great Britain have lost their careers over such research.  So what is the difference?  The only potentially controversial finding in this study says that anti-depressants MAY be a factor- with a big red flag not to go off your medications.  And, in their list of potential environmental factors, while they do stay that toxic exposures may be a factor, they fall short of acknowledging that those could come from vaccines- even vaccines moms are receiving during pregnancy.

I certainly applaud the University of California for doing this study and the Bay Citizen for printing the article; however, I am awaiting the next step to see how fast and how far they are willing to go, in their research, to protect our children.  For years the government has gone just far enough, even coming out in the past couple years with a study showing 1 in 91 children are on the spectrum… however, they are changing nothing in their recommendations for treatment or willingness to make public the research they have linking toxic exposure to mercury and other elements.  Research for the sake of research will no more help our children with autism than it will help any other epidemic.