Wednesday, July 28, 2010

"What A Tribute!"


Scotty B. Memorial to all Rapid City residents with a disAbility.
Kbj Cosse': "What a tribute!"
                                                              [Facebook entry July 27, 2010]

July 26, 2010 marked the 20th Anniversary of the signing of landmark legislation to curb the injustices experienced by Americans with disabilities. Known as the Americans with Disabilities Act of 1990 - a civil rights decree to bring parity, services, understanding, acceptance and appreciation for our fellow citizens - who are challenged with a disability

A disability may be of the physical, mental, visual, auditory,medical, and mobility nature.  Like our 5 year old son who IS 'enjoying the hi-5s of autism', a disability may also be a developmental condition.

We thank our good Facebook friend Anna B. of Rapid City, South Dakota for sending in this picture of a statue in her hometown.  Rapid City has long stood as a supporter of its residents with disabilities.  Mr. Scotty B. lived and enjoyed life, even as an adult with a debilitating degenerative disease.  As you observe this awe-inspiring testiment to the great people of Rapid City, notice that -just like many of his fellow residents without a disability:
Scotty B. is smiling.
Scotty B. is well-groomed.
Scotty B. is in motion.
Scotty B. is going about his  daily goals of life.
Scotty B. is still contributing to his community.

Also, we like this memorial statue because it is exhibited in an American public square!  This is reflective of how people with disabilities want to be productive, understood and appreciated for their ABILITIES - instead of being idle, unknown and hidden away in shame.

Thank you Anna B. for sharing.  Thank you Rapid City,S.D. for caring. Thank you Scotty B. and so many others for enduring joyfully.  If ever we travel to your great city, we would definitely want to take a picture with you and Scotty B. IN an American PUBLIC SQUARE!

Kindly share your photo or story about a person(s) with a disAbility. 


{"Enjoying the Hi-5s of Autism-A Family Experience!" is now on Facebook.  Go to the Discussion section of the FB page with the same title, and share your comments about various autism and developmental disAbilities topics.}

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Monday, July 26, 2010

Celebrating the 20th Anniversary of the Americans with Disabilities Act!


July 26, 1990 is the historical day that landmark legislation was signed which catapulted the civic rights of people with disabililities into a new level of understanding, appreciation, acceptance and support.
 is still affecting the disabilities population in  positive ways.
Overall, America is a better country because of the passage of this monumental presidential act.
Share how the ADA vision of 'Liberty, Justice and Access forAll'
 has impacted your life or someone that you know with a disability.


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Sunday, July 25, 2010

Happy VALUE Day!


Good morning,

We are enjoying our 2nd Sunday of appreciating people with disabilities.   As we mentioned last week, we want to share the inherent VALUE in the disability population. 

Yesterday, a big smile came over my face when I saw this entry by Kelly Green for 'Artists and Autism'.  Thank you JMK for creating this unique way to communicate VALUE in artists who just so happen to be on the autism spectrum.

Share how does Kelly Green's art piece makes you feel?

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Friday, July 23, 2010

Not Sure


Not Sure about ....

Autism Spectrum Disorder - can we use a more positive term instead of 'disorder'.
We know that our kids are not operating completely according to standards, societal norms, grade level expectations, etc...

How about just simply say Autism Spectrum. 

Who added the descriptor 'disorder'?

Don't want to use it anymore. Don't want to say that anymore. 

How about Autism Spectrum Functions, ok, 'symptoms' even sounds better. 

How do you say to your child that they have a 'disorder'? 
Trying to explain Autism Spectrum is difficult, enough.

And you want our son to be accepted by his peers. But, you say he has a 'disorder'! Go figure!?

What or how did you explain ASD to your diagnosed child, to his siblings, to his friends?

What or how does your child explain her ASD conditon?  Oh! see there's another term we could use CONDITION!  Sounds much better than the 'd' word. - See, told you so-- not using that term any more!

Okay, so now that that's settled...

What about the descriptive statement  'Our child has ASD.' 

What's wrong with that?

Oh come on ...!   It's the word 'has'!
Let's reflect on the definition of 'has'...

Seems like this Autism Spectrum condition 'has' him and not that our son 'has' AS! 
It's not like he choose AS.  Our son did not hand-pick Autism as a preferred condition in comparison to other developmental disabilites.

Let's see if we could start a  Petition called 'Change the Clinical Name of Autism Spectrum Disorder to Autism Spectrum (Condition)" international campaign!

Ops! said the 'd'  word again! I guess outdated, insensitive, inferior descriptors are difficult to stop saying.

Is all of this rambling just still a sense of DENIAL?!


Let's start writing that Petition!
{Who do we send it to - the CDC, the DSMD, the APA, or just all the medical boards, in general?}


Wednesday, July 21, 2010

To GFCF or Not?


What is your take on the Gluten-Free Casein-Free Diet for people with food sensitivities (who are on the spectrum)?

Without sharing names, let us know the following:
  1. What is the developmental disability?;
  2. Who has the diet sensitivities?(gender, age);
  3. When did you notice the digestion condition;
  4. How are you treating their diet sensitivities?; and
  5. Why did you decide to GFCF or not?
Blog your comments here or on my Facebook page of this blog [same title, "Enjoying the Hi-5s of Autism - A Family Experience"]!/pages/Enjoying-the-Hi-5s-of-Autism-A-Family-Experience/135895773111543?v=wall


{July 26th marks the 20th Anniversary of the signing of the Americans with Disabilities Act.  Next Monday, we will dedicate this blog to sharing how the 1990 ADA has affected your life.}

Tuesday, July 20, 2010

When Did You Stop Crying! - From Diagnosis to Action


"AUTISM - ADVOCATE! no longer just crying! OMG!"

This is our quote posted on our Facebook page.  We decided this is the stage were are at now.

Prior to our being diagnosed with Autism Spectrum Disorder, we just thought he was a 'norma'l,' regular','typical' happy baby.

Then, his pediatrician, early intervention preschool and child development specialist ALL at once seemed to come to the same conclusion - after independent tests, assessments, evaluations and observations.
  • a neurological condition
  • early intervention
  • a learning disability
  • academically challenged
  • a developmental disability
  • sensory integration issues (touch, hear, taste, smell, see - all 5 human senses affected)
  • social underdevelopments
  • communication deficits 
  • special needs
  • special education (O.T., APE, Speech/Language,A.T., Sensory Room, ABA)
  • behavior intervention plans (possbily needed in future) 
  • tests, evaluations, assessments, observations
That's when the crying started!  What  does all of these labels mean?
  1. Is our son no longer the happy baby we brought home from the hospital 2 years ago?
  2. Is our toddler just simply going through the terrible 2s?
  3. Are we bad Parents?
  4. Is our child really that 'different?
  5. He's just a picky eater, right?
  6. But, isn't he ah some kind of genuis?(misspelled on purpose)
  7. Doesn't quoting Galileo and the solar system relevant!?
  8. But, he's been tech. savvy since 6 months.
  9. But, he can count to 100 and is learning Spanish and Japanese!
  10. Wait a minute...What?!?!?
Next time, we share our we grew from crying to advocating.

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Sunday, July 18, 2010

Happy VALUE Day! sharing 'Extremely Strong Emotions' 'E.S.E.'


Well, this past Sunday, did not seem like a Hi-5 day - at least not for about 1 hour or so.  Read further to find out why.  We hope this blog helps those who do not understand how Autism Spectrum Disorders 'touch' the lives of people.  We hope this blog reassures those who do understand that you are not alone. Let's stay strong for our children, loved ones, colleagues and even the people with Developmental Disabilities whom we have yet to meet.

THIS IS NOT A typical TEMPER TANTRUM!  This a child diagnosed with autism having what we so naively consider to be 'a bad day'.  We don't know, this hour could have been wonderful for our son. Afterwards, our 5 year old seemed so relieved. Read on.

The National Institute of Mental Health, National Institutes of Health have identified 7 'Major Brain Structures Implicated in Autism: the Cerebral Cortex, the Amagdala, the Hypocampus, the Basal Ganglia, the Brain Stem, the Cerubellum and the Corpos Callosum Autism Brain (NIMH,NIH) . Because our son does not have 'the words' to say over 90% or more of his thoughts,feelings-we do not know if one of his brain parts was bothering him - you know like when you have a headache, earache, or toothache.  He could have simply been feeling overstimulated.  Read on.

Oh! He's just tired - but, he said 'no' when offered a nap.  Maybe, he's hungry - but, he had just eaten a fav snack.  Perhaps, he wants to go outside in the pool - another firm 'no' reply.  Now what?!  This usually is life on the autism spectrum of disorders?!?!?!?!

Sometimes the ASD life is as Artsists and Autism contributor Catherine Contillo rendered - 'E.S.E. Extremely Strong Emotions'

We shared this artpiece with our son's Child Development Specialist -
"We wanted to share this art piece about how our son feels sometimes. This was how he expressed it-just like E.S.E. - it is so unbelievably accurate, we thought we were looking at our son. We wrote this on our Facebook page, where the artwork is featured via 'Artists and Autism' on Facebook. The artist Catherine Contillo thoughts revealing her artpiece's concept is below. First are our thoughts about the artpiece we shared with the artist. Additionally,we feel the (Artists and Autism)Facebook self-portrait depicts his expressions,sometimes,too. "

"What do you think?"

As Parents, we are hoping for answers, even if they come from Mars!

Here is what we wrote on the Artists and Autism Facebook post to thank Catherine Contillo -

"This artist accurately depicted our 5 year old son's expression, about once a month. E.S.E. depicts our son this past sunday for about 1 hour. He did not have the words to describe what he 'wanted',was feeling. We could not console him. We felt helpless,unempowered,but not hopeless. [You don't punish,scold,ignore or hate a person experiencing E.S.E.]. Instead,we massaged him, soothingly talked to him - trying to communicate, reach into his world. He just cried like this until we think he was exhausted or he no longer 'wanted' or 'felt' that way. Then, on his queue, we just happily played, like before he was thinking or feeling this way.
 Oh, If we could know what made him just suddenly express E.S.E. We don't know if he was feeling this way all morning, or if E.S.E simply overwhelmed him. Then, for a moment, you think, does he want us to know? We do not always explain why we are feeling a certain way - we don't know why we are feeling a certain way...SO WHY SHOULD HE! Our love for him just makes you want to void the pain and reveal his usual joy. But, humans were designed to have a myriad of emotions, even 'Extremely Strong Emotions'!
He just cried like this until we think he was exhausted or he no longer 'wanted' or 'felt' that way. Then, on his queue, we just happily played, like before he was thinking or feeling this way. Catherine Contillo, we need a copy of E.S.E to show his child development specialist. I am in awe at this depiction-truly 'Extremely Strong Emotions'(7-9-10)." [KBJC',7-13-2010Facebook]

Below are the comments about how artist Catherine Contillo derived at what we feel are son's "inner soul depiction", sometimes - when he seems to not be his 'usual joyful self'.

Artists and Autism I just love this next work by Catherine Contillo. I think and feel it is extremely representational of how many on the spectrum must feel sometimes, especially those that are nonverbal. On her work, Contillo had this to say: "I was laying in bed early early morning because I couldn't sleep at all. So, I made a painting in my head, and I thought of this painting. A painting with strong emotions, so the title I gave it is. E.S.E. Extremely Strong Emotions. I love how it came out like the painting in my mind. 7.9.10"

Let's sing Barney's theme song, ...
"I LOVE YOU, YOU LOVE ME. We're a happy family. With a great big hug and a kiss from me to you,won't you say you LOVE me too!"  I Love You Barney's theme song

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Happy VALUE Day! sharing 'Artists and Autism' & 'Autism Exposure'


Hi-5! Just decided a way to share some good news.  Blog about it. 

On our Facebook page, we have the honor of highlighting "Artists and Autism" (administered by Jeffrey M. Kellan,who also has a FB link).
The art pieces and music features are wonderful.

Yesterday, we shared one of the art works entitled "ESE Extremely Strong Emotions". 

We think sharing selections from Artists and Autism and from Autism Exposure should be dedicated for Sundays.  Happy 'VALUE Day!' is the theme reflecting the inherint, innate, undeniable VALUE that is present in all people with a developmental disability

Let us share what we wrote on one of the contributors Facebook page, after reading her piece with a question for Parents of children with this and other neurological conditions. We hope that Parents of neuro-typical children will seek to understand and share with their kids,too.

July 17, 2010

Autism Exposure Discussion: i have asked this question before but i think it is important as will help people understand autism better. As a parent of a child with an ASD what do you wish people knew or understood about your child??

5 hours ago

Kbj C- I wish people knew that my 5 year old son is happy, athletic and enjoys life. I wish they understand, that just because he has ASD, does not make him void of feelings, deaf or an inanimate object. Thus, my son feels your discomfort, hears your rude comments and sees your piercing stares. You are not invisible and neither is he. He is just as curious about you as you are about him, but, he shows manners, as he has been taught by his parents. He is a developing person with a developmental disability. ASD is not contagious- in the medical sense. Rather intellectually, non-disabled kids can learn from disabled kids - if adults would cease prejudicial prejudgements and seperation. [ Now let's sing, "I love you, you love me"...see most kids know this unifying song.]

2 seconds ago
Then we wrote:
I'm going to share this question on my Google blog - "Enjoying the Hi-5s of Autism - A Family Experience (of Life raising a child with a developmental disability). But, right now, I have to pray. Sharing how others sometimes view my child is painful.
[Kindly 'friend' each of these artists Facebook pages, too. (Artists and Autism and Autism Exposure).  We hope you will learn a lot from them, just as we do every time we view their sites. We appreciate how they share their hearts, so honest, so pure.]
Autism Exposure
exposing the world towards acceptance, understanding and the truths of autism.

Home Location: Charlotte, North Carolina

Description: this page was created by a young woman diagnosed with autism who purposes in spreading awareness, acceptance and understanding across the world.

Website: http://www.autismexposure.ning.com108/ People Like This

2 albums Angels with autism

Created about 2 weeks ago College Graduates with an ASD

Artists and Autism by Jeffrey M. Kellan

Artists and Autism postings are to be strictly art and/or music--no other posts of any kind will be tolerated...:)

Location: Fort Wayne, IN


3 of 460 links
God's Ears - Independent Film from Grizzly Peak Films 2:14pm Jul 17.

"Friendships and Autism" written and copyrighted by Melody_Rain 5:20pm Jul 16.

Creative minds  1:31pm Jul 15


3 of 18 links
Probing Question: Can autistic people succeed at work? 7:15am Jul 17

Autism, PDD-NOS & Asperger's fact sheets Depression and suicide risk with Asperger syndrome and A 4:28pm Jul 16

Pain: Teaching what it is and what it means 1:31pm Jul 15

{Check today's next blog "Happy VALUE Day!"  sharing one of the art works entitled "ESE Extremely Strong Emotions".}


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Saturday, July 17, 2010

Wise Up! = Questions & Comments - to Boost or not to bother?

{Feel free to post your comments and questions.  We ask that you respect the vision of this blog.  It is designed for families and not for those who use profanity, demeaning or abusive terms.  If you have a question, we hope that    experts will answer the question.  If you have personal experience regarding a specific question, please provide your comments.  If you can quote research, published views, or provide links to news reports and similar reliable sources, please do so.}

Okay, I'll start with the first question.

Background info - Re: Annual checkup(well baby/kid check) time for 5 year old son occurs around his birthday.
nurse practitioner - who had never met him in the last 5 years of his existence - recommends that we give our son lactose free Boost to boost his weight.  His Growth Measurement chart indicates his Body Mass Index is not balanced because his weight has averaged  the same for the past 2 years.  He is 4 feet tall, and has been quite slim since he was 1 years old.   Despite a developmental disability, our son is rarely ill.

We explained to the nurse practitioner that our son has good metabolism, is quite active, runs a lot, gymnastics, trampolines every day, and enjoys 2k nature walks about 3 times a week.

Anyway, 95% of his maternal male relatives (grandpa, uncles, boy cousins) were just as slim as him at the age of 5 and now are as tall as the average American front door. His dad says that he and all of his siblings(of average height) were quite slim as toddlers through high school, and they still are as adults. And, I was quite the model type before I got married (you know the old contentment issue, love handles syndrome,baby fat hanging on...oh!that's right were not talking about marriage bliss and pregnancy weight right now).

Let's stick to the point, bloggers!

As we were saying,...
Furthermore, we informed our new pediatric nurse that he eats well, and has a good appetite, although he is extremely picky.  Over the years, his birth pediatrician has said to not make eating an issue, as longer as he's eating something every day.  Our son enjoyed lactation and the breast milk kept him quite healthy.

Up to the age of 2, our son ate a large variety of foods. Because he has lactose intolerance, citrus allergies, and digestion problems, our son's food selections are affected by his sensory issues. Because his sensory issues affect his food selections, he no longer eats a large variety of foods.  He no longer tolerates 90% of any kind of  soft,stringy, mushy, or cold foods.  That's right - the onset of Autism Spectrum Disorder has taken away his joy of string beans, spaghetti, red beans, hamburgers, pears,peaches, natural apple sauce,real fruit pop-sickles, strawberry vanilla ice cream,cookies and cream ice cream.  He breaks out in itchy hives if given pure citrus-based foods.  Our little boy gags and chokes when attempting to eat oatmeal cereal and mashed potatoes, but will eat skin-on french fries and whole grains bread and cookies.[It's all about texture-smell sensations trumps taste-appeal and visually-appetizing.] 

Yes, our lovely son may take an hour to eat dinner...
First, we deal with the right selection - "I Want...." which he usually knows exactly what he wants to eat and when he wants to eat, and what foods to eat when. This means raisin bread only for dessert and not for breakfast,please and thank you.
Second, he addresses presentation: the right temperature-room temperature,slightly warmed, nothing hot or cold; And the right portion - preferably one food item per dish or a 3-segment dish; And the right size - if cutting no bigger than 1/2 inch on each side with 1 inch total circumference with 1 inch diameter; And the right color- nothing orange, blue,  green, black, dark brown, purple and red. But at least he eats?
Third,since a baby, he has to poke it, look at it, smell it, hold it in his mouth, and hopefully, chew and swallow the food.  At least he no longer holds the food in reserve in his mouth.  Overtime, his eating ritual is less obvious and intense.  But, at least he eats.

Also, our happy son only eats 2 brands of pepperoni pizza(picking off the pepperoni- but he won't eat it unless the round pepperoni is on there,at first).  &. [The pepperoni's got to go but the mild tomatoe sauce is masked by the white cheese, which he likes.]  He likes pb&j, but not on white bread. He likes cheese sandwiches with hamburger buns with seeds, but not grilled. [It must have an angus beef patty in between(which he used to eat and not the bread) so he can seperate and eat only the cheesy, seedy bread.]  But at least he eats!

Additionally, our cheerful son tolerates h2o-based white grape and apple juice &  nuts, oats, kosher chicken/turkey hot dogs. Our wonderful son prefers skin-on french fries, crispy chicken nuggets, fish, and shrimp. For breakfast, he likes blueberry pancakes,crispy hashbrowns,golden waffles, and biscuits with strawberry preserves. For snacks, he eats peanut butter, crunchy nuts and fruit bars, raisins, baked tortilla chips and cinnamon raisin bread.  He enjoys walnut raisin real oatmeal cookies-especially the freshly made ones at school. For dessert, he likes slightly steamed cinnamon apples; gingerbread cookies, and pecan cinnamon sweet potatoes  casserole. His fav treat is apple pie.  Our wonderful son will explore what's on our plates.  About every 6 months, he usually builds his menu choices and eats something different like shrimp. Being selected for his weekly menu is no guarantee that this food choice is permanent.  For instance, after 3 years of eating pork and beans,he suddenly just stopped.  He still eats raisin bread, but not the crust on this new brand- since the area no longer sells his favorite brand. He has refused to eat beef meats for over 3 years!  But, at least he eats.

So,we are creative in food preparation. We know we got to get the vitamins into our 'picky-eater', and keep him nutritionally balanced-while respecting his preferences and remembering his allergies.  For the past 3 years, this means trying to outsmart a toddler by hiding the nutritious foods he does not like in the foods he enjoys eating. I call it "bleguising" = blending + disguising of foods.  And it usually tastes just like it sounds, awful! This means extreme limits on fast-food!  Absolutely No salt additives! Absolutely No soda pop! Portion controls of candy only on holidays!  Extreme limits on sugary foods. 'Bleguising' (blending + disguising) vegetables into foods he does enjoy eating. And ...  flavor-free liquid vitamin supplements and baked chicken every day! Buy organic, gluten-free,casein-free, salt-free, and calcium-rich, when ever possible.

We are proud that our son has learned to enjoy the cafeteria routine; and eats at school - with no 'bleguising'. He enjoys whole grain bread with seeds on the crust-including his schools fresh baked breads and mini oatmeal cookies. He likes the school's breakfast pizza, cinnamon rolls and chicken nuggets.  Maybe, he'll try their salad,too.  He eats in the car, at the park and some relatives homes.  When dining out, he also prefers the single-line buffet style restaurant, but, will tolerate fine-dining waiters, if the ambiance is right -dim lights, low acoustics, and respect my comfort zones - please and thank you.


We think our son will make an excellent food inspector, if he chooses so!

Now for the question:
"Do you think we should follow this pediatric expert's particular weight boosting recommendation or should we just let nature run its course?"
[The Nurse Practitioner was nice, thorough, seemed sincere; and did give us a sample and coupons.]

FYI- Picky Eaters Eating Disorder:  A July 6, 2010 Wall Street Journal article indicating that if  our lovely son does not grow out of the picky eater stage, the 2013 Diagnostic and Statistical Manual of Mental Disorders(DSM) will classify him as having a 'selective eating' disorder 'not otherwise specified' (American Psychiatric Association).  This psychiatric reference speculates that he has 'obsessive-compulsive' tendencies.  Furthermore, long-term, these eating habits  could lead to 'nutritional deficient'  linked to heart and bone problems. 'eating disorder'! Not fair!  Our loving son is already labeled with one disorder-AUTISM SPECTRUM DISORDER! Well, that's another battle with the medical/MENTAL health insurance industry![Reference article "No Age Limit onPicky Eating"]

{Well, after learning that, I think we'll just start 'bleguising' the Boost into our precious son's h20juice!}


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{Well, after reading all of that, I think we'll try 'bleguising' the Boost!}
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Friday, July 16, 2010

FYI - Back to School #5 part C - Visiting the Pediatric Dentist


I know we were supposed to conclude with the pediatric dentist info. on yesterday.  But, in providing  a reference link, we reviewed the posted comments from those reading the online article.  So many understood the challenges that people, like our son, face at the dentist office. 

Unfortunately,several of the comments lacked insight, compassion and understanding.  This is one of the reasons we are writing  this blog - to help the non-disabled community understand the disabled community. [We won't provide other readers posted  comments, positive or negative, that's not within the text of a written article.]  We supplied a somewhat rebuttal comment and directed those individuals to our blog.
July 14th, 2010 at 12:44 pm Your comment is awaiting moderation.
Hi-5! What a great dentist. Children and adults with autism spectrum disorder should be treated with respect and humility. Professional doctors should always be professional. If a pedodontist does not want to take the time to learn and train dental staff, then they should not provide services for people touched by this developmental disability. I commend this doctor.
My Google blog,entitled, “Enjoying the Hi-5s of Autism-A Family Experience”, posted a blog today about visiting the pediatric dentist as a back to school FYI. Read about my family’s experiences, including at the dentist.
Feel free to include your comments-try to show some compassion,please. You never know when you, a loved one, colleague or friend will be touched by ASD. Go to .
If you are interested in reviewing the article and viewing the doctors video-taped techniques, go to
Dental Care Program for Children and Adults with Autism

This film is an educational tool used to train dental professionals in the “D-Termined Dental Program of Repetitive Tasking and Familiarization in Dentistry” so that they can provide better dental care to individuals with autism spectrum disorders and other developmental disabilities. Because of their difficulties in communication, heightened sensitivity to, reactivity to, and fear of stimuli in the dental environment, individuals with autism are often unable to receive proper dental care without sedation. The D-Termined Program is a behavior management approach to dentistry which has proven successful in practice with children with developmental disabilities. For more information, please visit:

Remember, as this progressive dentist is seeking to make the dentist visit pleasant while productive for clients with autism, so is Autism Speaks in their Dental Tool Kit Guide and online video.


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FYI - Back To School# 5 part B - Visiting the Pediatric Dentistwater cover ridehorssre lunge scat scram getaway exit scurry zip getback duck depart flee getgoing

{And we continue with our toddler experiences at the dentist office.}

We don't know when it happened, how it happened or why it happened! But what happened was... Our beautiful teeth brusher no longer wanted to brush his teeth! Our son would hesitate when we would announce, "Teeth Brushing Time!" Our son would cry as we begged him to come and brush his teeth. OMG! He had stopped enjoying brushing his teeth! So, we changed toothbrushes, toothpastes,what time he brush, but to no avail. His daily oral cleaning routine nearly came to a halt! As if in pain, our son would scream loud the entire time. So loud, we knew our neighbors could here him pleading with us to stop! We later learned that our precious little boy-like many kids diagnosed with autism spectrum disorders - has oral sensitivities regarding his mouth. He had developed gum sensitivities and would gag as we tried to clean.

{Need to pause to pray again before sharing these past 3 years.}

As our son grew, the teeth brushing time was more of a horror show. Annual visits became 4 times a year visits just to keep his mouth healthy. Once, the pediatric dentists said they would "have to strap "him in a 'swaddling pappous' straight jacket type of thing. Forgetting that he did not even like his 5 point harness car seat until we learned to make a game of it and decorate it with stickers and clip on toys and support him with head and neck pillows - WE ALLOWED THE USE OF RESTRAINTS in order to ensure effective oral care! We knew that would make our son somewhat anxious. But, he would be more upset than we could ever imagine! Only Dada went with him to the back; and Mommie stayed up front anxiously waiting with a cool drink and to console him, if necessary.

When they emerged from the procedure-with Dada holding him close- no one had to tell me it was an AWFUL experience for our son! His clothes were soaking wet, his hair looked like he had been in the shower and his face bore shock! Fully fatigued, his hands reached for me. We immediately re-hydrated him. We held him and sang to him and rocked him and massaged him; and... WE ALL CRIED SOME MORE! Okay a snack and off to his favorite park. But, as soon as we left the parking lot, our son was already asleep. [At that time, we had not yet received a diagnosis for Autism Spectrum Disorders. We thought our son was just 'different'. We had no idea he was managing with ASD.]

We had accomplished the annual cleaning, 
at what price to our son's peace, self-worth, dignity and sense of parental protection!

We were silent during the drive home.

Later while sharing, we had both thought, "NEVER AGAIN WILL OUR SON BE RESTRAINED FOR A DENTIST VISIT!" We discussed how we would never condone restraints at school, so why did we think it was acceptable at the dentist?!!! We forgave each other and talked about a new strategy. We decided that we would have to advocate for our son and implement a 'positive behavioral supports' method at the dentist and all doctors visits. We thought of ways to better prepare him for the annual cleaning which takes longer. We promised our son to try to better meet his needs next time.

Thereafter, we made sure the dental Staff understood his needs, his responses, his motivators. In an effort to accommodate him, first, we arrived early enough for him to socialize with other kids. Second, we did the general questions in the main cleaning area to give our son an opportunity to adjust to this other room area. Not rushing into his cleaning also allowed him time to engage and see how the other children were responding to the dental assistants. Then, we would take him to a private room for the cleaning. From then on, the pediatric dentists at this office NEVER relied on restraints as a quick fix- for our son!

Post-diagnosis, we always remember that our son - like most kids with Autism Spectrum Disorders - needs transition time from the car, to the lobby, to the back, to the private cleaning room. Now, his pediatric dentist considers what we say, observe how we massage his hands and stomach and calmly talk to him. Noticing he was interested in the dental tools, the dentist demonstrates them before using them and allows him to touch and examine them. NEVER AGAIN DID OUR SON HAVE TO BE RESTRAINED FOR A DENTAL VISIT! We were sorry when we had to leave that pediatric dentist's office because of insurance changes. Our son always enjoyed playing with the kids in the aquarium area and choosing a gift for a good visit. After 2 years, WE -  Dada,Momma, his Scheduler, his Receptionist, his in-take assistant, his Accountant, and his Pediatric Dentist - all were a good oral care TEAM for our son.

{We think this was a teaching moment for all. We hope pediatric offices will exhaust their options, get developmental disabilities training, and always consider non-restraining methods with other kids, too.} With each new doctor we must educate them about our children, especially, if they have a developmental or physical disability. We must advocate and not expect these professionals to just know what to do all the time. They are trained experts in the area that they studied. They are not experts in your children, you are! So speak up and speak out! Our children are depending on us to effectively represent their needs.

Visiting the dentist is a necessary part of taking good care of your mouth. Brushing at home is good, but, we still need a professional to do annual cleanings and let us know how well we are cleaning at home. Since our son was classified with autism spectrum disorders, we like to refer to an international advocacy group called Autism Speaks. As we prepare for back to school 2010, we checked their website for tips. A fellow advocate referred us to Their Family Services Community Connections newly released 'Dental Guide Tool Kit'. It's colorful, easy to read and tells kids all about partnering with their dentist for a lifetime of good oral hygiene. The video is simple, interesting and applicable.

Wish we had this Autism Speaks Dental Guide 3 years ago. But, it's never too late to advocate for systems change-even at the dentist office. With a personal note attached, we are sending our pedontist a copy in hopes that it will be read by the entire office, not just the assistants. It would be great if this special needs dental guide/video would become standard training for all pedodontists who provide services for children with disabilities.

Read further for more info. about how to help your child and dentist enjoy their visit.


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Thursday, July 15, 2010

FYI - Back to School #5 part A - Visiting the Pediatric Dentist water cover ridehorssre lunge scat scram getaway exit scurry zip getback duck depart flee getgoing

YOUR CHILD GOES BACK TO SCHOOL IN LESS THAN A MONTH! (depending on where you live)

{You may have noticed that  some of our html links and the posted Titles  have words that do not quite go with the format.  This is because our 5 year old wants to blog, too!  So whenever we step away, he types his fav words, too.  So, from now on, just know that the little blogger has blogged again!  And that's a good thing! Enjoy.}

{This blog is quite lengthy. Check tomorrow for part B.}

The American Academy of Pediatric Dentistry "encourages parents to get it done in year one" teeth exam campaign.  Autism Speaks, a disabilities advocacy organization, recently released their Dental Guide.  Visit their website to download a copy. They include videos available on 

 We have taken our son to a pediatric dentist since he was a new born. We wanted to make sure that we were properly cleaning our baby's gum and tongue. Our parents had taught us to take care of our teeth. So, we knew that early prevention would help ensure that his teeth would have a good mouth to grow in as he got older. Usually after nursing, we would wipe out his mouth with a warm towel.  We would softly sing "Brush, Brush, Brush our teeth, this is the way we Brush our teeth." Then at bath time, we would use a tiny blue index finger brush and massage it across his teeth, gum and entire mouth, followed by wiping with a warm cloth. Our baby boy enjoyed these soothing techniques, especially right before bedtime. His pediatric dentist had informed us to buy these dental tools at any pharmacy. Upon returning from fleeing Hurricane Katrina, we had to find a new dentist.

Over the years, we've taken several pictures and videos of son enjoying tooth brushing time. As our son grew, he would crawl to the bathroom and raise his arms to be held by his Dada. He liked holding the big toothbrush and trying to clean inside his dad's mouth. He enjoyed listening to the bubbly sounds coming from his mouth as his Dada gargled. As he grew, we bought a baby/toddler toothbrush sets. He could hold the tiny toothbrush in his little hand and the bristles were soft and the toothpaste was tasty. At least twice a day, our son would excitedly stand on his footstool and look in the mirror as he brushed his tiny teeth. 1)Brush up, down, top, bottom, front, back and all around; and 2)don't forget to Brush my tongue.  3)Now- Spit, Rinse, Spit, Rinse, Spit.  It was quite a production with us singing in the background, "Brush, Brush, Brush your teeth, this is the way we Brush our teeth."

Hi-5! We had established a good oral home, up to the age of 2.


{to be continued tomorrow}


NEW YORK, NY (June 8, 2010) – Autism Speaks, North America's largest autism science and advocacy organization, today released a new Dental Tool Kit to help parents promote good, life-long oral health care habits for their kids with autism. The free kit, which includes both a video and a down-loadable printed guide, features tips for improving oral hygiene at home, as well as information about how parents and dental professionals can make a visit to the dentist's office less stressful and more productive.
The Dental Tool Kit is the result of unrestricted educational grants to Autism Speaks from Colgate and Philips Sonicare, and the collaborative efforts of all three organizations. The Dental Tool Kit offers tips on brushing and flossing at home and for preparing for a dental visit. Because children with autism often benefit from visual guides and schedules, the kit includes a visual depiction of a dental visit that parents can review with their child in advance. It also features a questionnaire that families can provide to their dentist before the visit that explains some of the specific challenges that may affect their child with autism. For dental professionals, there is information about autism and suggestions for making their interactions with patients with autism more successful.  Lisa Goring, Autism Speaks national director of Family Services. “We hope that our Dental Tool Kit will give parents some useful strategies for promoting good oral health care habits, and provide dental professionals with information that will make treating kids with autism a more positive experience for all.”

Autism Speaks History  Autism History and News links
Autism Speaks was founded in February 2005 by Bob and Suzanne Wright, grandparents of a child with autism. Since then, Autism Speaks has grown into the nation's largest autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families.

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Wednesday, July 14, 2010

Council for Exceptional Children

Council for Exceptional Children


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FYI - Back to School #4 - Immunizations and Vaccinations Oh my!

Vaccination contre la grippe A (H1N1) de 2009Image via Wikipedia

Okay, get shots before or after his birthday...before-that way he can enjoy the party... no after-that way he can enjoy his party.  The great debate begins a month in advance!  So agonizing!  This year, we chose before, no I think after his birthday.  Well, it does not matter when you schedule your child's recommended immunizations, THEY WILL NOT ENJOY THE PAIN!

We are not blogging about debating whether we approve of the Centers for Disease Control and Prevention recommendations, or whether you should comply with school entry requirements, or whether your pediatrician is unprofessional if he suggests you don't need the vaccinations

You know, we think our son knows that the around my birthday pediatrician visit is always going to end with PAIN!  Why can't these experts invent a vitamin, a liquid dosage, or some other non-invasive, much less painful or a pain-free method of innoculation of our kids.  Last year, we totally enjoyed the new H1-N1 up the nose inhaling method.  Our son was pleasantly surprised with that immunization visit.  We did our research.  Informed the pediatric schedular that we want the nasal version AND we reminded them that our son has Autism Spectrum Disorder.  We prepared our son for the dreaded visit by reminding him that the same way we have to spray his nose when he is sick, is the same way the doctor is going to do it to hopefully prevent him from becoming sick.  Again, our son was pleasantly surprised and afterwards scurried off the table heading for the door to go to his fav 'doctor visit reward' park!  {By the way this playground is 70%  handicap accessible and all children can play together inclusively on  a variety of uniquely modified apparatus - Kids Konnection A Boundless Playground.}

Not so last week!  We were not prepared!  What happened?!! 5th Birthday Celebration, writing Enjoy blog; July 4th ; grandpa hospitalized,daily routines, etc... But, this was a routine visit, right?!
1) Scheduled early annual visit.
2) Reminded Staff of special needs-accommodations/modifications,if any.
4) Packed snacks, h2o juice, fav tech toy and the perennial doctor's visit book.
3) Arrived 20 minutes early for transition time and to play in well-equipped resource area!

So what happened?
a) New staff - including his personal nurse, all were unfamiliar faces from the receptionist area to the attending nurse OMG!!!
b) No familiar kids in play area.
c) Scheduled too late in afternoon around nap time.
d) Unaware of CDC spring recommendation for new vaccination.
e) No doctor's office advance notice of new vaccination.
f) Doctor's office overlooked another vaccine that should have been given on a previous visit.

So, getting ready includes getting ready the right way, too.

ENJOY! the rest of your summer.

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