1. Go here.
2. Vote. You can either use Facebook Connect, or create an account. I suggest Facebook.
3. Go back tomorrow and do it again, because right now, it looks like you get a fresh set of votes everyday!

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Vote to help a child with autism

“For hope is but the dream
of those that wake.”

           ~Matthew Prior, 18th Century Poet

Autism is the #1 Developmental Disability in the country yet it is incredibly underfunded and still poorly understood.  While money is going into research to find possible causes, 1 in 110 children in the US and 1 in 70 boys are all waiting for us to understand them and help them and their families in a real way.  Right now, you have a chance to spread hope to families in the US by supporting the National Autism Association in the Chase Community Giving Challenge on Facebook (www.voteautismnow.com). 

As I stated in a previous blog autism is a politicized topic and the groups that represent our cause are certainly privy to being both revered and hated at the same time based on stances they take.  This is not one of the times where our community can afford to be quiet and not help our children.  Before you choose to not vote for NAA because you might not agree with a specific stance etc… I want you to know what you’d be choosing not to vote for.  The money Chase is giving away would go towards NAA’s three-by-three plan:

• Direct Assistance: Doubling the number of grants we are able to award to families in need of financial assistance for their children’s treatment and therapies. Significantly increasing access to lifesaving equipment for individuals at risk of wandering-related death.
•  Education: Production of conference workshops, multiple audio and video PSAs and free toolkits addressing the issues of abuse in schools, wandering, safety and family support. Hosting three national conference events to educate clinicians and families on the latest advances in research, treatment and prevention.
•  Advocacy: Successfully advocating for the most relevant scientific research, policies to ensure access to medical care, coverage for medical and safety devices, services and support over the life span, and protection from abuse.

Please take the time to watch this powerful video: http://www.youtube.com/watch?v=EzDQyKgJYeo

Your two second vote can make the difference in a family getting a “helping hand” to get intervention for their children, provide them safety devices, services, and medical care.  It can help a family or professional discover the most current information about the condition so that we don’t have to continue to hold off on what this generation of children needs while we wait endlessly for our leaders to argue about the possible causes for it! And perhaps most importantly, your 2 second point and click can make all the difference in a family not losing their child this year for a wandering related death. 

Last summer our severely affected child wandered from our home for what was the longest 15 minutes in my husband’s and my life.  We ran out of our home barefoot on the hot summer pavement–our hearts racing, tears streaming down our faces as images of his beautiful face and laughter flash before us.  The sweet sound of his voice awakened me from the worst nightmare I have ever experienced and as soon as I had him in my arms and held him close we got in the car went to Lowes and turned our home into a fort!  We were lucky that years ago we let our neighbors know about our son’s condition and that we live in a quiet-low traffic neighborhood.  The number of parents that are losing their children with autism to wandering related deaths is sky-rocketing and you can make a huge difference by a simple vote.

So take a break from Mafia Wars, Cafe World, Sorority Life, Pirates, Farmville and whatever other Zynga addiction you have on Facebook and vote to keep the hope alive in the life of a child with autism! 

“Chase the Hope at http://voteautismnow.com

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In an effort to give parents–old and new–trying to help decipher what Autism means for their family, I wanted to occasionally share news with our readers that might be helpful in understanding what new advances and approaches are being looked at.  For this particular blog entry, it seems fitting to explain the different camps within the autism movement first to get a good understanding of the articles that are out there.  Not all news is “truth” per se and often one’s bias frames the discussion and analysis that is utilized in the article (so does who pays your bill, but that is for another time).  Therefore, rather than just update you on events and news going on this week, I thought I would preface it with some of the ideologies surrounding the stories we have here.

The movement to understand and serve individuals affected by Autism spectrum disorders is really divided up into several camps with some crisscrossing one another.  For our own family, we are a hybrid of a few methodologies out there, which I may allude to below.  These main philosophies surrounding the movement are:

1. Autism Rights Movement (also known as the Neuro-Diversity and Anti-Cure Movement) is principally held by individuals called self-advocates who are primarily–though not exclusively–on the “higher-functioning” end of the spectrum often termed Asperger’s Syndrome.  Individuals who advocate this approach encourage society to look at Autism as just a different way of viewing the world and neither better or worse and certainly not something that needs to be “cured.” Typically individuals aligned with this belief state that Autism Spectrum Disorders are genetic in nature and that therapies that try to “change” them are harmful, detrimental to their true self and potentially dangerous.
2. Cure through ABA perspective consists of families, caregivers and some self-advocates that believe that through Applied Behavioral Analysis–implemented as early in childhood as possible through Early Intervention Services–an individual with Autism could be cured from the condition. Adherents to this belief can also be hybrids with other therapies listed below. In general though, it is believed that through Early Intervention therapy that focuses on the behaviors associated with autism and trying to control or modify them so as to make them more socially appropriate or acceptable.  ABA is considered the “typical” approach for dealing with a child with Autism because the diagnosis of the condition itself is defined along behavioral lines.  In order to receive a diagnosis of Autism, you must have demonstrated differences and delays in the areas of communication, social interaction and “a lack of flexibility in thinking and behavior.” (Quoted from First Steps in Intervention with Your Child with Autism by Phil Christie, Elizabeth Newson, Wendy Prevezer and Susie Chandler). Please note that the authors of this book are not proponents of ABA and are listed mainly for the quote listed above.
3. The Biomedical Approach which is a growing movement among families contends that some of the effects and symptoms associated with ASD can be treated or cured through biomedical approaches or interventions that are usually individualized for each person.  The approach typically has a 4 step process that includes 1. treating gastrointestinal issues that are found among many individuals on the spectrum, 2. special diets (Gluten/Casein Free, Specific Carbohydrate and Ketogenic Diets among others), 3. Detoxification  (children with autism have had high exposure to lead, mercury, arsenic and other heavy metals and this can intensify the severity of the child’s delays, and 4. Methyl B-12 shots (Methyl-B12 is known to significantly help with higher cognitive function such as speech and language development, focusing and attention, improved environmental awareness, and more willingness to engage socially.)
4. Socialization Therapies and Approaches such as Son-Rise and Floortime are now more accepted than ever thanks to studies showing that individuals on the spectrum–with their different way of viewing the world–have less activity around their mirror neurons (”monkey-see, monkey-do neurons) which allow children to typically watch a social interaction or learn how to speak etc… just by observing their day to day environment.  By not having the neurons fire the way they are typically supposed to, children would not be able to pick up on language or daily routines as readily as children for whom mirror neurons fire typically would.  Social therapies that focus on joining (interacting with a child’s main areas of interest and participating in their repetitive play and not changing or judging that behavior) and interactive play can actually aide an individual on the spectrum to increase the activity in this part of the brain and thus learn new skills and increase their socialization and interactive ability.

As mentioned, there is much room among most of these ideologies to, for example, believe that you can treat your child’s autism with biomedical and social therapy or ABA therapy all at once, and I would term these families as having a hybrid approach.  As I already stated above, our family does partake of a hybrid belief as we have a child severely affected by Autism who is mostly non-verbal who is starting to engage and partake of the world around him–quite happily I might add–thanks to biomedical and socialization therapy.

Autism, and especially the idea of “curing” autism, is a highly politicized topic because of some of the philosophical differences listed above and because there does not seem to be one well-known cause for the condition.   I think one of the worst things we can do as a society is to be so short-sighted as to believe that there could ever possibly be “ONE” cause.  Autism now affects 1 in 91 children in the US (1 in 110 according to the most recent CDC study) and 1 in 58 boys and is estimated to affect over 1 million children in this country alone! Like other conditions, is it not possible that every child/person who has the condition may have arrived at it through different means?  Would this not in essence mean that we are all correct…to a degree.  As I stated above, Autism is diagnosed–thanks to the handy-dandy DSM-IV–based on behavioral and communication deficits in an individual.  Thus people are being placed in a category not by clinical trails, DNA or genetic testing into a category, but simply assigned a label based on symptoms displayed by each child. Could you not then have a genetic condition that causes you to have delays in language, social interaction and repetitious and inflexible behavior?  Could you not also develop this because of a combination of genetic and environmental factors?  I digress, though, I suppose that is a topic for another time.  I think my main point there is simple, I think that marrying ourselves to one approach and one overarching cause for autism for 1 million children in 1 country alone bastardizes what we need to do to help our children and society do to better serve the people living with the condition.  Each person living with an ASD diagnosis is an individual and their way of arriving at it and their way of treating or not treating it can be completely different depending on what is going on with them internally.

When a parent speaks of “curing” or treating their child, it is not necessarily a desire to purge their child of individuality, curiosity, focus or creativity (all “good” things that can come from having a neuro-diverse mind) but to treat a child who is moderately or severely affected who may not be potty-trained, who is non-verbal, who is inconsolable because of intestinal issues or who has quite frankly a compromised immune system and displays metal toxicity.  I think there are great points each group makes about there way of looking at Autism, and I think each group also makes a lot of errors–the main among them, is viewing Autism as a 1 size fits all model for every child.  As a parent, I just ask that we all focus on our children and become happy and loving detectives of their every move to see what they react to and against and how we can better help them interpret their world. Binding ourselves to a specific way of addressing our child’s progress blinds us from looking at interventions that may in many ways really help them achieve things they may really want to achieve now or later on.

In this vain, I now want to give you some food for thought and share recent articles that deal with some of the discussion I listed above in one way or another.

1. Celebrate all Individuals on the Spectrum with Autism Sunday. http://www.bloggernews.net/123438.  On February, 14, 2010, let’s join our friends in the UK in praying for the well-being and safety of all our loved ones on the spectrum around the world.  In this excerpt from the article:

   The International Day of Prayer for Autism and Asperger’s Syndrome falls on 14th February. The Founders of Autism Sunday, parents and carers of a teenager with autism, Ivan and Charika Corea from the United Kingdom have urged campaigners around the world to use the occasion to campaign and lobby on the serious issues of autism and Asperger’s Syndrome.There are over 60 million people with autism around the world. Many suffer without proper public services. The current credit crunch and recession has devastated many families with autism and Asperger’s Syndrome around the world.

2. Texas releases a study stating that Hispanics in that state are less affected by Autism than other groups and claims that socio-economic disparity is not an apparent contributor: http://abcnews.go.com/Health/wireStory?id=9441843

   I think this article raises a lot of issues that do need to be considered. First, the article clearly contradicts studies just done in Arizona that showed the exact opposite finding (see previous blog post).  Does this mean than that the environment or perhaps diet for these children is different?  Are there differences among newly migrated Hispanics to the area versus Hispanics that have had roots in Texas their whole lives?  Could it be that the study is completely flawed and that socio-economic factors do in fact hold the key to the difference, because the group they are observing have less access to health care or are intervention?  As with many other articles in recent months and years, I think the study actually raises more questions than actually answers them.  I would love to hear from some friends in Texas about their perceptions about this article.

3. Three US Publications cite genetic study of Autism among top 2009 Articles: http://www.dnaindia.com/health/report_three-us-publications-release-top-medical-advances-in-2009_133000The largest-ever genetic study of autism spectrum disorders and a remarkable success for gene therapy in reversing inherited blindness have made it to the list of top scientific achievements in 2009, according to three US publications: Time magazine, Discover magazine and the journal Science. Both the studies were conducted at The Children’s Hospital of Philadelphia.

   Again, I am not an anti-genetic involvement parent, but I do know that for many of the families we work with there seems to be no genetic predisposition for autism and to add to the conundrum, for many of them that have twins, only 1 child seems to be affected at all while the other one is “typically” functioning or others have multiple children and only 1 of them is affected.  I think, as with most studies, that this is progress for–as stated–the 15% of individuals that the study estimates are affected in this specific way.  For the other 85%, we need to keep an open-mind and hope that our answers are out there as well.

4. Stop me if you’ve ever heard a parent already tell you this one before–”Toxic metals may influence autism severity!”  Well, apparently when it comes from an Environmental group or scientist it just has more weight than from the mouth of a parent who lives it 24-7, 365 days a week and watched their child lose certain skills like potty-training, language and social skills.  In a “No-Duh” moment, an article in Environmental Health News published by Environmental Health Sciences, states the obvious fact that metal toxicity can influence the severity of a child’s developmental delays. Well, better late than never guys!
   http://www.environmentalhealthnews.org/ehs/Members/mlamerrill/toxic-metals-may-influence-autism-severity

I hope all of you can get something from this blog and that you will use the information herein as it is useful for your own individual edification and your child’s individual needs.  As always, I appreciate all of you and am glad that as someone blessed to have many individuals on the spectrum to love that I can share this journey with all of you.

Happy 2010! May this be all of our best year yet!!!

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• While more detection is a cause for the raise in rates, it can not be said to account for everything.
• Hispanics were by far the heaviest hit with a nearly 150% increase in places like Arizona. Whites only experienced a 55% increase in that time. This is a major issue with language barriers and cultural issues already keeping these individuals from early intervention services.
• This was a study based on children diagnosed before 8, so this does not include higher functioning children who often get a diagnosis in school with the Aspergers condition.
• Boys are affected officially at a rate 4.5 times to that of girls.
• Prevalence may be even higher in places without the proper diagnostic facilities.

Overall, the report had little information that the community wasn’t already aware of, but the increase in Hispanic population is something to watch moving forward. We feel at the Tommy Foundation we are well positioned to help this community and hope that others will continue to meet this need with us.

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“Each second we live is a new and unique moment of the universe, a moment that will never be again. And what do we teach our children? We teach them that two and two make four, and that Paris is the capital of France. When will we also teach them what they are? We should say to each of them: Do you know what you are? You are a marvel. You are unique. In all the years that have passed, there has never been another child like you. Your legs, your arms, your clever fingers, the way you move. You may become a Shakespeare, a Michelangelo, a Beethoven. You have the capacity for anything. Yes, you are a marvel. And when you grow up, can you then harm another who is, like you, a marvel? You must work, we must all work, to make the world worthy of its children.” Pablo Picasso

I want to talk today about perceived ability in our children and the limits we as a society place on them based on various external criteria.  Perhaps I am just tired of hearing all too many of us tell our children—regardless of ability—what they can and can’t EVER do.  We tell them that they will never have relationships; that they may never leave home and perhaps even that they may never speak.  See as I see it, the problem with having a child or loved one with an Autism Spectrum Diagnosis isn’t the diagnosis—for all you have to do is meet certain criteria on a psychological test to get that—but the prognosis we feel is appropriate to pigeon-hole these children’s ability.

Perhaps it is me being naïve, a bleeding heart, or an eternal optimist—Lord knows that I have been called all three—but I never want to confine a child or anyone by the person that stands before me today.  See life is a beautiful, wonderful journey with hills and valleys, and the best way to motivate any person is to find that which motivates them and passionately shine a light under them that they may achieve their full potential.

We have become a society so intrinsically fixated on “results” that we take away art, dance and cultural programs from our kids’ schools in order to focus on that which will make our children “functional.”  Don’t get me wrong being a functional member of society is certainly important for the sake of the society, but I would take a child in passionate pursuit of their purpose in life any day over one miserably sitting in a cubicle wondering what they did with their life and replaying that Muppet Treasure Island song “There’s gotta be something better” in the back of their mind.

Just today I read an article concerning the rising rates of autism. (In case you have been under a rock the last few years it has sky-rocketed from 1 in 10,000 to 1 in 91 in less than 20 years).  The article itself was not all that bad, but the comments afterwards in part inspired me to do this blog. The ignorance—for that is all that you can call it—from third parties unaffected by the condition or who know no one YET with the condition, isn’t surprising.  The argument goes for many of these people that the rise in autism is simply that it is finally being diagnosed more accurately or that it is being over-diagnosed.  Don’t get me wrong, I am not a huge fan of the current diagnostic criteria for the condition, however, people that say this have obviously never encountered the serious issues—social, developmental, sensory—that our children or loved one anywhere on the spectrum face each day.

But alas, I am used to the ignorance of those that don’t know what they don’t know. What does kill me a bit inside each time is the ignorance of a child’s own parent. I apologize if perhaps you get offended and this has been you in the past, but I hope you will take what I am about to say to heart and change for your own mental and emotional sanity as well as your child’s.  In this particular article, a mom was claiming that her child diagnosed with what she terms mild autism would probably never fulfill his dream of becoming a pilot because he has a label now and that it is this label that will somehow chase him for the rest of his life and stop him from achieving his dreams. This is not only sad but also is enabling this child to develop avictim mentality when he has all the ability and potential to do whatever he wants. The only limitation this child could have for piloting is if he has vision or other physical issues.  There are plenty of well-known people with Autism in history and today who were much more severe—Raun Kaufman, Temple Grandin, Wiliam Stillman to name a few—who defied and defy this every day.

My message to this mom is simple and two-fold.  First, get down on your knees right now and thank God that the worst that you have to worry about with your child is a label following him for the rest of his life.  What if you still had to clean dirty diapers on a 20 year old?  What if you had no way of communicating with your child or still had no definitive way of doing it? What if your child was taller and bigger than you and terrified you because you didn’t know how to control them?  What if your anxiety and concern for your  child affected every area of your life—from your marriage, your other children, your friendships with others, your ability to even leave your home because you just are not sure how your child will react and whether or not they will be so over-stimulated that they will have a huge meltdown?

You my friend are selfish and not only that you are ignorant yourself.  Ignorance is “lack of knowledge, education or information.” Your son will not be limited in his dreams and aspirations because of a label, he will be limited because of your lack of faith in his abilities! If all he ever hears is you—his own MOTHER– tell him that this label placed on him by others will keep him from doing the things he loves, than he will never try and he will never exert himself to a position of giving it his all.

I am so eternally grateful that I have been blessed to help people who have children all over the spectrum and who are on either side of the mild versus severe category.  I thank you for sharing your children with me every day and showing me what these kids can all accomplish with love, determination and a bulldog mom and dad.  I thank my son for showing me unconditional love. That little boy and his dad are the best things that have ever happened to me and his laugh warms my soul and his eyes pierce my very core.  I thank my husband for being a good dad and educating himself about autism and being proactive. He hasn’t escaped into other tasks to avoid the hard work with our son, but has been my partner in the entire process and has taken it upon himself to personally meet with other dads to give them advice and show them how much their wives need their support—not just financially but as an understanding and passionate advocate for their child or children.  I am grateful and blessed to have a supportive team around my child who understand him and love him and fight with me to show him that this world of ours is a safe and fun place to be and that when it is scary, we will be here to help him through it. And lastly, I am eternally grateful for my movement friends, who understand the monsters we are fighting all over the place for our children and who are putting aside our differences and preconceived notions to work together and make sure that this rate does not continue to increase.  You are awesome warrior moms and dads and I love every single one of you.

So, random mom from article comment, please take heed and realize that your son is a gift to you. I hope that since you obviously are not the one doing it that somewhere along the line, he finds a mentor or coach that will inspire in him the seeds of greatness to go out and do all that his heart desires and he realizes his full potential.  For your son, I wish only that he knows no limits and that you realize that you are a unique, beautiful, incredible marvel.  A marvel that like Picasso said has yet to be defined and whose potential for greatness is limitless.

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Tommy cleaning out the pumpkin pie tin

If you are like us, your child may be on a special diet. This recipe will not work for all diets, so please keep in mind that this worked for my son’s specific allergies–GF/CF/Almond Free etc…  While Tommy has ALOT of allergies, other families we work with have to have their kids on ketogenic diets (high fat) because of epilepsy issues and others are on a Specific Carbohydrate diet (low carbs).  This recipe would probably not fit those diets because it does have a bit of carbs.

If, however, like us you have been searching for years for more recipes that could help our kiddos not “miss out” on anything, then this is something you will appreciate.  Tommy–with our help-devoured this.  Both Rich and I definitely even think this might even taste better than regular gluten rich, casein rich, fat rich pumpkin pie! It was delicious, so I hope your family enjoys it as much as ours did.

PUMPKIN PIE
Adapted from: Nourishing Traditions
TOTAL TIME: 55 MIN.* MAKES 8-12 SERVINGS

Ingredients for Crust:
1 box Kinnikinnick GF/CF/Allergen Free Graham Crackers
6 tablespoons Spectrum Organic all Vegetable Shortening (instead of butter)
1 /3 cup of sugar or other sugar alternative

1. Mix all ingredients together
2. Use shortening to grease up pie pan (9 inch pan)
3. Pour Crust mixture in pan and refrigerate for 1 hour.

Ingredients for Pie:

1 Graham Cracker Crust made from scratch (see above)
1 15 oz can of pumpkin puree or 2 cups fresh baked pumpkin
3 eggs
1/3- ½ cup honey or other natural sweetener, to taste
1 tsp dried ginger or 1 Tbsp freshly grated ginger
1 tsp cinnamon
¼ tsp sea salt
¼ tsp powdered cloves
¼ tsp nutmeg
1 cup coconut milk (full fat)

Steps:
1. Line a 9 inch pie pan with your choice of gluten-free crust. Crack the eggs into a large bowl and beat well. Add the rest of the ingredients until thoroughly combined. Pour batter into pie crust.
2. To avoid the crust getting burned, cover edges of pie pan with strips of aluminum foil until they just over the edges of the pie crust.
3. Bake at 325 for 45 minutes or until firm.

Per Serving (doesn’t include crust): 96 Calories; 4g Fat (37.2% calories from fat); 3g Protein; 13g Carbohydrate; 1g Dietary Fiber; 64mg Cholesterol; 77mg Sodium.

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• To view our page, click on the link below:

http://apps.facebook.com/chasecommunitygiving/charities/853399?src=wallpost&ref=mf

GENERAL PROGRAM INFORMATION

• What is Chase Community Giving?

  Chase Community Giving is a program run by Chase that will allow Facebook users to vote for local charities and non-profits, and help direct Chase corporate philanthropy dollars to eligible organizations in the following focus areas: education, healthcare, housing, the environment, combating hunger, arts and culture, human services, and animal welfare. The grassroots campaign aims to inspire a new way of corporate philanthropy.

  The eligible charity receiving the most votes will be awarded $1 million, the top five runners-up will receive $100,000 each and the 100 finalists, including the top winners, will be awarded $25,000 each. Additionally, a special Advisory Board led by prominent national philanthropists will allocate $1 million to the nominated charities of its choice.

• How long does the program run?

  Chase will use Facebook to allow participants of the Chase Community Giving program to select local causes and organizations in need of support focused on the issues that matter most, enabling those organizations to make further tangible progress toward their missions. Voting for Round 1 ends December 11. Voting for Round 2 ends January 22, 2010 and the top charities will be announced on or around February 1.

• What is the role of the Advisory Board?

  The Chase Community Giving Advisory Board was formed to embody the spirit of giving back to local causes and the importance of community giving. The role of the Advisory Board will be to review the 100 finalists from Round 1 and the winners of Round 2 as determined by participant votes to help ensure the finalists meet the eligibility requirements and standards of the program. The Advisory Board will also choose one or more organizations, from those organizations receiving at least one vote, to be awarded a combined total of an additional $1 million.

• Why do I need to become a fan of Chase Community Giving and provide access to my information? Will I receive e-mail communications from Chase by becoming a fan?

  The purpose of allowing access and becoming a fan of Chase Community Giving is so that administrators are able to track participant votes and to allow participants to spread the word of the program by giving users ability to comment on the charities that they vote for, and to notify friends about the program. We hope that participants will use the fan page to create awareness around the opportunity for charities to receive donations totaling millions of dollars from Chase’s philanthropy fund. It has no direct tie to Chase mail or email campaigns.

• How will the winners be determined?

  Voting for Round 1 will go from 11/15/09 until 11:59:59 p.m. ET on 12/11/09.

  Voting for Round 2 will go from 01/15/10 until 11:59:59 p.m. ET on 01/22/10.

  Winners from both Rounds will be determined once the votes have been tallied and it has been determined that all program eligibility standards and requirements have been met.

• I am a member of the media and would like to contact someone at Chase about the program, who can I reach out to?

  Media inquiries should be directed to JPMorgan Chase corporate media relations.

  To view our page, click on the link below:

http://apps.facebook.com/chasecommunitygiving/charities/853399?src=wallpost&ref=mf

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