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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.

Natural Approaches to Autism- Webinar tonight

Occupational Therapy, Speech Therapy, Physical Therapy, Nutrition Therapy, Homeopathy… the list goes on and on.  Which therapies are best for your child?  Which ones will actually yield benefits and how do you know which ones to try?  As the mother of 3 children on the autism spectrum, we have used many therapies to help our children on the autism journey.  Tonight, I will present our webinar, “Healing Autism Naturally.”  Topics include:

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What diagnoses fit within the ASD (Autism) family
What traditional medicine has to offer
What natural therapies can be used to help our children and families

 

Be sure to invite your friends and families to http://healthandwealth.adobeconnect.com/autism/ to join us.  Webinar begins at 8:30 p.m. CST.  Space is limited so please arrive early to insure a spot on the webinar.  If you would like to schedule a consultation to discuss any of the topics discussed on the webinar, or a nutrition consultation, please fill out the form in the contact section of www.asdperspectives.com .

Becky Cash is the mother of five children and author of the recent book, “Healing Autism Naturally.”  Several of her children are on the autism spectrum and she has used a combination on traditional therapies, diet, and nutritional supplementation to help recover her children from ASD (Autism Spectrum Disorders.)

 

ASD and Methylation

Methylation and Autism was a big topic at the Autism One Conference and may be a big piece of the puzzle in figuring out why autism is on the rise.  I first learned about the methylation cycle when my children began seeing a functional medicine doctor, about 3 years ago.  Through testing, the doctor discovered that this pathway was closed to my children and therefore their bodies could not process properly.   Among other things, they were not absorbing iron, b-12 and other nutrients properly.  And so we began the work of opening this pathway.  At that time, our doctor was looking to help our oldest child who just seemed to be getting sicker by the year.  She had already been diagnosed with celiac and thyroid disease and showed signs of mitochondrial disease.   Her processing issues were getting worse and she was very week.  In beginning to open this pathway, we definitely noticed improvements in areas such as emotion and energy.

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Recent research has shown that many children on the autism spectrum may infact have this genetic condition, poor methylation.  So what exactly is the big deal here?  The methylation cycle is actually a series of processes that leads to proper detoxification of the body.  In addition, each process in the cycle requires and allows absorption of key nutrients, such as, folic acid, B12 vitamins and iron.  We can already see why we would have a big problem if this system is not working properly.  At the end of the methylation cycle is the production of glutathione, the strongest naturally produced antioxidant in the body and the antioxidant needed to detox things like heavy metals out of the body.  Since the cycle does not work, we can begin to minimally hypothesize that this could lead to a connection as to why many children on the spectrum are found to have high levels of metals in their body.

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The research supporting poor methylation in children on the autism spectrum is now being looked at and supported by such Northeastern University and John Hopkins Institute; as well as, the Autism Research Institute.  DAN doctors are also creating new treatment protocols to work directly on opening the methylation process and, as I shared, this was a big topic at the Autism One Conference this year.

To learn more about methylation we suggest looking at the following resources.

www.generationrescue.org

www.autism.com

If you would like more information about non-invasive testing for your child, or yourself, please contact me.  We work with a team of functional medicine doctors who use saliva and urine testing to diagnose breakdowns in key processes such as liver, kidney, adrenals, oxidation and many more.  The testing is affordable and can be done from your home.

 

 

 

Choosing the rights supplements for your child…

I used to take it for granted that all supplements were created equal.  Actually, I used to take it for granted that anyone even needed nutritional supplements.  My father started off his career working for the FDA and later went into quality assurance for the food and drug industry.  We ate what he brought home from work, grocery store brands and whatever vitamins were left over from testing (ie: generic flinstones).  It was not that he thought these were good vitamins… it was more that there really was not a knowledge as to why supplements were needed.  Today, we have come a long way, but we are still just emerging.  Today, even the American Medical Association  says that anyone who leads a life with stress, does not get enough sleep or does not eat properly, should take a multi-vitamin; however, many doctors still do not know where to lead their patients.

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In the autism community, we know all too well that our children and loved ones have needs far greater than the food guide pyramid.  And in many cases, we know that nutritional supplements can go a long way to healing our childrens’ bodies.  However, we often do not know where to start, what brands are best or even if they are safe.  I took for granted, for many years, that there had to be many safe brands.  I also took for granted that the brands sold by doctors had to atleast be well tested.  I now know that many nutraceutical companies do not do third party research, do not test beyond the minimum standards and many  market to the medical community in the same way that the pharmacuetical companies market there medications. 

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As a mother of three children on the autism spectrum, I hate to give parents more work to do; however, this may be one of the more important assignments.  You need to do your own research to find out the testing standards and efficacy of the products you are using.  When I started calling companies to ask what I thought were basic questions, I received responses such as. “You need to talk to one of the doctors in your area who sells our brand,” “We cannot possibly tell you how many tests we do a year,” “We test for the government recommendations.”  That last one kept me up at night.  The government minimum in an unregulated industry is ludicrous.  THAT company is one of the supplement companies that is most well known in the Autism community and not even my doctor could tell me anything about there standards. 

I used to take it for granted that I could use anything other than a store brand and consider it good enough.  I now routinely trust only one brand, because I have done YEARS of research that has led me to only one brand.  I am completely biased and have no problem admitting so.  After receiving test results, this past year that show that my daughter has barely recognizable levels of yeast, heavy metals and many of the deficiencies so common in the autism community, I use and promote the Shaklee supplements.  As I share in our book, Healing Autism Naturally, our daughter went from needing to be taught to walk and talk to now entering a Catholic School, as a 9 year old, at grade level, in the Fall.  If you would like to learn more about setting up a supplement program, please contact us.

Schooling Autism

My son returned home, from a class field trip on Wednesday, all abuzz.  Apparently the parent chaperones had been reading their  e-mail on their phones when the school newsletter came out announcing teacher changes.  My son was busy proclaiming which teacher was retiring and which teachers were going to new classes and how this affected who (he has aspergers so was completely clueless to my anxiety level that was increasing with every word)… all I heard was that the teacher we were working with for my 9 year old daughter was going to 1st grade.  My heart jumped and my head screamed as I rushed to the computer.  My fears were confirmed…

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Now if you have a child with autism, you understand.  We found a teacher that desperately wanted to help in the transition of my daughter from an intensive ABA therapy setting to Catholic school and now… she was switching grades.  I immediately         e-mailed the principal and then busied myself as I was just heading out the door to give a talk to parents on nutritional approaches to autism.

I did not get far when the phone rang, and would you believe, there on the other line was the principal I so dearly love.  She wanted to assure me that the teachers going to 3rd and 4th grade (yes, they are giving my daughter a split grade to meet her needs), had already met and were completely ready to meet all my daughters needs.  All I could think was, “you called me to comfort me?”  “You placed teachers based on my daughters’ needs.”  “You actually care that much about my child.”  Of coarse, this was nothing new to us.  The teachers and staff at our school have always gone above and beyond to not just educate but love my children.

So as another year comes to an end, my word is “blessed.”  I pray that you find a blessing among the chaos of your life.  Is it a teacher, doctor, family member, babysitter, new therapy or just the flowers sprouting outside?  You are one of our blessings.  Thank you for reading our messages and being a part of our family.

Watch out for our “teacher/ school of the year contest,” and “pediatrician of the yeare,” coming soon.