Any feedback on Mendability?

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Leo
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Any feedback on Mendability?

Postby Leo » Mon Nov 04, 2013 4:25 pm

We are looking at Mendability. Any feedback/ experience on it?
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Winnie
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Re: Any feedback on Mendability?

Postby Winnie » Mon Nov 04, 2013 10:24 pm

Leo, I don't recall anyone mentioning that program previously.

I looked at the website, and unfortunately as is often the case with the marketing of these programs, the "how it works" page is big on marketing and not on "science." And as is often the case, the study citations do not support the efficacy of the exercises/program they are selling, though these citations give the appearance otherwise (most people will never bother to look these up and check themselves anyway).

The "what do the exercises look like" explanation is just straight-up silly -- and one that has been packaged and repackaged in dozens of ways before to market to parents who have children with disabilities.

There is nothing inherently wrong with "sensory enrichment," but I don't feel you need this program to provide an enriched sensory environment and activities for your child (despite the more expensive version being listed as "BEST CHANCE FOR SUCCESS" :wink: ) If you really can get your money back, I guess there is no harm in trying it out, but there doesn't appear to be anything new here other than another marketing website.
Winnie
"Make it a powerful memory, the happiest you can remember."

Leo
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Re: Any feedback on Mendability?

Postby Leo » Tue Nov 05, 2013 9:50 am

Winnie,

That was my feeling as well. But as parent, sometimes I am compelled to try whatever is avaialble on market.
There is a TED video on their website, don't know if it is a lie.

Will wait for someone who has experience in this.
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Ruth's_mom
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Re: Any feedback on Mendability?

Postby Ruth's_mom » Tue Nov 05, 2013 11:58 pm

I've used the exercises in Mendability since January of this year with my daughter. I can assure you that it is not a scam or even the same old same old. We've tried all sorts of therapies over the years, like most families with a child on the spectrum. Many helped but nothing ever made such a dramatic difference in Ruth's abilities. In fact, when we look at the DSM-IV criteria for Asperger's (I know AS is not in the current DSM, but the 4th edition is what she was diagnosed with), she no longer meets any of the criteria. I will miss the camaraderie of the parents' forum & the encouragement of the Mendabilty team, but for all intents and purposes, Ruth would be classified as neurotypical now.

There is a very good book about the plasticity of the brain ("The Brain That Changes Itself" by Norm Doidge http://en.wikipedia.org/wiki/The_Brain_ ... ges_Itself). Dr. Doidge offers examples of people who were able to overcome serious difficulties through deliberate actions that changed the physiology of their brains. The exercises offered by Mendability are all about neuroplasticity. (Please note: Norm Doidge is not affiliated with Mendability. What they have in common is their science.)

I read the book in 2008 or 9 & wished there was some way to find this kind of therapy for my daughter. What d'ya know! In December 2012 an ad for Mendability popped up on my Facebook. After reading everything I could find on their website, I realized that what they were talking about was neuroplasticity & decided to give it a try. After about five months, I began to realize I no longer needed to fear dying before my daughter & leaving her essentially without protection. Now, after ten months on the program, we expect that she will be able to go away to college next year (she is twenty-years-old). A year ago, we hoped that she might be able to live more-or-less independently by the time she was thirty-five (and it really was only a hope, not an expectation). When we started, emotionally & socially, Ruth was more like a 14 year old than 19. Now, her decision-making & skills (life & social) have finally caught up with her intellect.

I would recommend that you read everything you can find on their website & give the program a try for a month. Go for the Advanced, rather than the Lite if it's at all possible. If you think it's a waste of time after three weeks, get your money back. But don't judge the program by the exercises which are deceptively simple; judge by the results you see in your child.

crlwtrs
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Re: Any feedback on Mendability?

Postby crlwtrs » Sun Nov 10, 2013 3:48 pm

I would also suggest giving Mendability a chance. I started way back in December with completing the first test, but I never followed through even though I was given a free month to try it out. The exercises seemed overly simplistic to me and I just couldn't believe that they could make any difference in something as profound as autism in my son. I had already been hit up by "Brain Balance" who told me that their program costs $6,000 for a matter of weeks of treatments AND my son would require two sessions so that would be $12,000 upfront before they started. There are a lot of people making money off of our sick kids so I'm very leery.
I had already had him in ST and OT since he was 20 months old (he's now almost 5), and ABA. Looking back on it, I don't know why I doubted a sensory program since my Devin has so many sensory issues. I started Mendability again July of this year, only this time I decided I was going to commit myself to it 100%. I started it because it is parent-administered and with Devin's 5th birthday coming up I had to do something more than the little classes I was doing everyday at the table with him. I was contacted by someone from the program and he and other staff are there everyday for support, advice and encouragement, either by phone or email.
Devin has done so well in just the 3+ months. I started with the hopes of verbalization increasing and there has been a lot more "babbling" and approximations. I am still hopeful for increases in words. (He's now at about 3-5 words a day spontaneous with more prompted). But some of the other benefits I hadn't anticipated. A big one has been his object-mouthing. Devin's "pica" was so bad he used to chew on something virtually every second of the day. He licked windows and walls and chewed through electrical cords. We had to put conduit on the electrical cords in his room to keep him from getting electrocuted. This has changed dramatically since we started the Mendability program. I know it was Mendability because he had the object-mouthing for such a long time (years). His ST and OT told me to redirect him, but I would be redirecting him a million times a day. None of the Mendability program mentions pica or object mouthing benefits, but it has helped Devin. Another benefit was in sleeping. Devin used to wake up every night around 3 or 4 am and stay awake for 2-3 hours. He would be up running in his room, banging on walls, laughing, sometimes crying, etc. When he woke up like that he couldn't go back to sleep so he'd be up for hours and of course that meant me being up. It was awful. He is sleeping so much better now. There are several days in a row where he sleeps through the night. Sometimes he still wakes up, but he is able to go back to sleep now. His focus and attention is better. Our gymnastics coach couldn't believe the difference in Devin after our summer break when we came back in the fall. He was listening and following direction where before he would run away. I used to have to yell at him to get his attention and now I can talk normally to him for him to follow directions.
Now when they say that my son should be able to talk one day I have hope that he really will. I don't blame you for being skeptical. I was too. But try it for at least a month or two. Give it 100% and commit to doing all the exercises everyday as much as you can. You can always stop any time you want.

Winnie
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Re: Any feedback on Mendability?

Postby Winnie » Mon Nov 11, 2013 12:46 am

Ruth's_mom wrote:I will miss the camaraderie of the parents' forum & the encouragement of the Mendabilty team, but for all intents and purposes, Ruth would be classified as neurotypical now.


I'm just curious -- how do parents (especially one who claims to now have a neurotypical kid) find posts on support forums asking about a therapy they just happen to be promoting? Interestingly, often the "testimony" posts for these therapies are the first and only posts by parents (like yourself). You are also this parent whose testimony is featured on Mendability's marketing site, correct? This:

I’ve recommended Mendability to *so* many people. The retired special ed teacher in me gets so frustrated when some of these parents aren’t willing to do a little work to help their kids succeed. Congratulations to the parents on this site who *are* willing to put yourselves out for the sake of your child(ren)’s future.
http://www.mendability.com/testimonials/




Ruth's_mom wrote:In fact, when we look at the DSM-IV criteria for Asperger's (I know AS is not in the current DSM, but the 4th edition is what she was diagnosed with), she no longer meets any of the criteria


Remarkable that your daughter gained 5 years of development in mere months. What diagnostic criteria were present before (as per DSM-IV) that Mendability cured in that time period?



Ruth's_mom wrote:After reading everything I could find on their website, I realized that what they were talking about was neuroplasticity & decided to give it a try.


Which study or scientific citation on their website supports the efficacy (or even theory) of the treatment? Perhaps we can take a look and discuss -- I'm interested. The concept of neuroplasticity neither supports nor refutes their treatment claims -- however, there isn't anything on their "science" page to support their claims. Even people who have had a hemisphere removed learn and relearn skills.


Ruth's_mom wrote:But don't judge the program by the exercises which are deceptively simple; judge by the results you see in your child.


Honestly, the claims about the exercises on the "how it works" page seem just silly.

What do the exercises look like?

The Water Game is an example of a game that encourages communication between the two sides of the brain.

Your child dips one hand in a bowl of warm water and the other hand in a bowl of cool water. After a few seconds, the bowls are switched and each hand is dipped into a new temperature of water. This process is repeated four times.

This exercise causes signals to be sent from the left hand to the right side of the brain and from the right hand to the left side of the brain.


This happens anyway. It is called decussation. And the type of stimulus, pathways, and points of decussation are hella more complicated than Mendability's (insultingly silly) marketing sales pitch -- info:

http://neuroscience.uth.tmc.edu/s2/chapter04.html
Winnie
"Make it a powerful memory, the happiest you can remember."

determined-dad
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Re: Any feedback on Mendability?

Postby determined-dad » Thu Nov 14, 2013 1:06 am

We're about a week into it and I can't report anything concrete yet although I'll be happy to update this thread once we're a few more week in. I had all of the exact same concerns listed above but we decided outside of money and time there wasn't much downside in trying. The user interface of the website is well laid out and easy to chart progress. We stumbled upon Mendability via the TED presentation as well.

Ruth's_mom
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Re: Any feedback on Mendability?

Postby Ruth's_mom » Thu Nov 14, 2013 10:12 am

Winnie, I don't want to debate. My purpose in responding was simply to answer Leo. He wondered if anyone knew anything about Mendability from personal experience. You're right about the testimonial being mine, but what is your point? I have nothing to gain whether or not parents use this program. My motivation is wanting for other children what is now my daughter's. I'm really not sure what your argument is - with the program or me.

If you have a child who could benefit, you can try it without worry. The activities are not invasive or harmful in any way. You can try it for a month and get your money back, or try it for longer and quit. If you don't have a child whose life can be made happier, more satisfying or just safer, why do you have an ax to grind with Mendablilty? As a parent, I've tried all those other programs and wasted money on things looking for help for Ruth, but just because some are meaningless or foolish, doesn't mean this program is. I can understand skepticism, but your response to me felt hostile and I don't get why.

Winnie
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Re: Any feedback on Mendability?

Postby Winnie » Thu Nov 14, 2013 10:05 pm

Ruth's_mom wrote:Winnie, I don't want to debate. My purpose in responding was simply to answer Leo. He wondered if anyone knew anything about Mendability from personal experience. You're right about the testimonial being mine, but what is your point? I have nothing to gain whether or not parents use this program. My motivation is wanting for other children what is now my daughter's. I'm really not sure what your argument is - with the program or me.


No need for debate. You could just respond to the questions I raised and the silly pseudo-scientific info on their site I pointed out, however.

When you make fantastic claims (your daughter recovered about 5 years of development in mere months, and now no longer has autism?), it is reasonable for you to expect questions, and for your audience to expect more than a sales pitch in response.

When promoters for any product or service avoid reasonable questions, it should be considered a flag. A big red wildly-waving flag.
Winnie
"Make it a powerful memory, the happiest you can remember."

Ruth's_mom
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Re: Any feedback on Mendability?

Postby Ruth's_mom » Thu Nov 14, 2013 11:28 pm

Ruth was diagnosed with Developmental Coordination Disorder about age 8, Non-verbal Learning Disability around 11, Anxiety Disorder at 14 or 15 and Asperger's at 17. She no longer meets the AS criteria in DSM-IV. I'm not sure what your question regarding her diagnoses is, so I don't know if I've answered it.

The only reason I'm promoting this therapy is because it works. I posted here because I learned that someone was asking about it and wanted to share our very positive experience so other parents would know about it. I can't imagine that I'm the only parent who spent most of my child's life looking for a way to help her achieve her potential and more importantly, find a way that she would be "safe" in a world that talks about accommodating, but in reality pretty much leaves adults on the spectrum to manage on their own.

There is information on the Mendability home page and all sorts of links on the website that link to information: TACA, the clinical study at UC Irvine, Wall Street Journal,... There is a brief explanation of neuroplasticity and some of the research done at the University of California at Irvine & Berkeley and McGill University. Again, I'm not sure what you're looking for.

BTDT
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Re: Any feedback on Mendability?

Postby BTDT » Fri Nov 15, 2013 12:19 am

The Mendability website gives the impression that the program is connected with UC irvine, but I couldn't find anything to confirm that. Does anyone know if that is the case?

kulkulkan
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Re: Any feedback on Mendability?

Postby kulkulkan » Fri Nov 15, 2013 1:42 am

Here is press release that references the UC study including marketing quote from professor. Haven't looked for the study.

http://www.marketwatch.com/story/mendab ... 2013-05-29

I don't believe the two new posters/testimonials that are probably part of the social marketing. But I maybe wrong and given the low price, it may very well be worth a try. A free 15 day trial like rethink autism (online ABA using SaaS platform) would have been helpful.

Winnie
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Re: Any feedback on Mendability?

Postby Winnie » Fri Nov 15, 2013 2:11 am

Ruth's_mom wrote:Ruth was diagnosed with Developmental Coordination Disorder about age 8, Non-verbal Learning Disability around 11, Anxiety Disorder at 14 or 15 and Asperger's at 17. She no longer meets the AS criteria in DSM-IV. I'm not sure what your question regarding her diagnoses is, so I don't know if I've answered it.


Well, I guess you didn't try too many autism therapies "over the years" if she wasn't diagnosed until age 17!

Again, my question:

Remarkable that your daughter gained 5 years of development in mere months. What diagnostic criteria were present before (as per DSM-IV) that Mendability cured in that time period?


Ruth's_mom wrote:There is information on the Mendability home page and all sorts of links on the website that link to information: TACA, the clinical study at UC Irvine, Wall Street Journal,... There is a brief explanation of neuroplasticity and some of the research done at the University of California at Irvine & Berkeley and McGill University. Again, I'm not sure what you're looking for.


There does not appear to be a clinical study on Mendability -- though the Mendability site certainly gives that impression that they are connected to UC Irvine sensory enrichment study. This appears to be a marketing sleight-of-hand -- not an affiliation with the study.

The Wall Street Journal will not load -- must be a marketing press release written by Mendability considering the sensational title: Mendability, a Breakthrough Clinically Proven Autism Therapy, Launches New and Affordable Autism Treatment

The TACA site is a testimonial from the parent who apparently owns Mendability.

The concept of neuroplasticity neither supports nor refutes the therapy claims -- seems like a "key word" thrown about to sound science-y to lay people.

The majority of those links take one to news coverage of the same UC Irvine study Mendability seems to be attempting to piggy-back for marketing.

Oddly, among the numerous links, what I didn't find on the Mendability site was a link to the actual study -- the full text. But it can be found here:

Environmental Enrichment as an Effective Treatment for Autism:
A Randomized Controlled Trial

Cynthia C. Woo and Michael Leon

http://faculty.sites.uci.edu/jjgargus/files/2013/05/Woo-and-Leon-20132.pdf

This study most certainly does not support the silly pseudo-scientific explanations of how Mendability's exercises work (under "What do the exercises look like? on their site) -- and there is not even a single mention of "neuroplasticity." No sensational claims, and no levels of programming with the most expensive being touted as "Best Chance for Success."

I certainly don't have any objection to sensory enrichment -- but I do object to fantastic and pseudo-scientific marketing claims pitched to parents for profit. There is nothing particularly earth-shatteringly breakthrough about the activities -- many are activities often incorporated into a variety of therapies.

Seems to me that the "Best Chance of Success" would be to reference the study (the actual science) for the methods and activities. And it's free. :)

(pages 3-4)

http://faculty.sites.uci.edu/jjgargus/files/2013/05/Woo-and-Leon-20132.pdf

The enrichment group received daily exposure to multiple sensorimotor
stimuli, distributed throughout the day. Parents in this
group were supplied with a kit that contained most of the supplies
needed for the sensorimotor exercises. For olfactory enrichment,
each kit included seven vials containing scented essential oils
(anise, apple, hibiscus, lavender, lemon, sweet orange, and vanilla;
Essential Oils, Portland, OR), seven empty vials with caps, and
cotton balls. For different textures, the kit contained squares of
plastic doormat, smooth foam, a rubber sink mat, aluminum foil,
fine sandpaper, felt, and sponges. For different objects to manipulate,
they were given a small piggy bank with plastic coins,
miniature plastic fruits, colored beads, a small fishing pole with a
magnetic “hook,” colorful paper clips, a large button, and 20 
small toys of varying shapes/colors/textures. In addition, the kit
contained straws, colored construction paper, four bowls for water,
pictures of well-known paintings, pictures of fruits, and a can of
Play-Doh. For music enrichment, they were provided with a classical
music CD (Classical Music For People Who Hate Classical
Music, Vol. 1; Direct Source) and a portable CD player with
headphones. The parents provided a wooden plank (2==  8== 
5=) for a walking exercise, scented bath soap and body oils for the
spa treatment exercise, and miscellaneous other household items
for the exercises, including a large salad bowl for water at different
temperatures, metal spoons, ice, blindfold, noise maker (e.g., a bell
or buzzer), picture book, cookie sheet, oven dish, mirror, ball or
pillow, pillowcase, felt-tip markers, and music that matched pictures
(e.g., Hawaiian music and a beach picture). They also pro-
vided material to create a multitextured walking path, such as
carpet, a hard floor, pillows, cardboard, or bubble wrap.
The children were exposed to four different fragrances, at different
times during the day. The parent placed one drop of odorant on a
cotton ball that they had placed in a glass vial and they then allowed
the child to sniff it repeatedly for a minute. This olfactory stimulation
was paired with gentle tactile stimulation, given by rubbing their
backs with a closed hand. They also were exposed to a fragrance
throughout the night by placing a scented cotton ball in their pillowcase
before bedtime. Parents were asked to cycle through each of the
seven odorants, which were chosen solely based on their pleasant
fragrance. Only occasionally did children dislike an odorant, and in
those cases, we provided them with another pleasant odorant (banana
or apple blossom; Essential Oils, Portland, OR).
The children listened to classical music once a day and the
parents were asked to use the portable CD player and the headphones
that were included in their kit to pair auditory and tactile
stimulation. However, the children typically would not use the
headphones and parents used speaker systems to expose their child
to the music. In addition, the parents were given written instructions
for 34 sensorimotor enrichment exercises, and after a brief
training session, they engaged their child with 4–7 exercises, twice
a day. These exercises involved somewhat arbitrary combinations
of sensory stimuli such as tactile, thermal, visual, and motor
activities. We instructed the parents to engage in a different set of
exercises every 2 weeks and the exercises became increasingly
challenging over the course of 6 months. The daily exercises took
approximately 15–30 minutes to complete, twice a day: 1. The
child places his or her hands or feet in water of different temperatures
(thermal, motor), 2. The child squeezes objects of different
shapes and textures (tactile, motor), 3. The parent draws lines on
the child’s hand with objects of different texture while the child
watches (tactile, visual), 4. The blindfolded child walks on a
pathway of different textures (tactile, motor), 5. The parent draws
imaginary lines on the child’s face, arms, and legs with objects
having different textures while music plays (tactile, auditory), 6.
The child selects the twin of objects in a pillowcase after seeing it
on the table (tactile, cognitive), 7. The child is given a scented bath
and a massage with scented oil (thermal, tactile, olfactory), 8. The
parent touches the child on his or her arms and legs with a cooled
spoon or warmed spoon while the parent speaks or sings (thermal,
auditory, tactile), 9. Lines are drawn on the child’s arms and legs
with cooled or warmed spoons (thermal, tactile), 10. The child is
shown a picture of an object and picks out the real object on a table
among other objects (visual, cognitive, motor), 11. The child is
asked to walk on a 2==  8==  5= board, then he or she is asked
to do that task blindfolded (motor, balance), 12. The child picks
out a colored bead among a plate full of ice cubes (thermal, motor,
visual), 13. The child is shown a photo and his or her attention is
drawn away from the photo using an auditory cue (visual, auditory),
14. The child lifts an object out of a cool bowl of water and
then a warm bowl of water (motor, thermal, visual), 15. The child
pulls a button from between the parent’s fingers (motor, tactile,
visual), 16. The child walks either on a sheet of foam or on large
pillows, eventually blindfolded (tactile, balance, motor), 17. The
child points to objects in a book and says the name of the object
(language, cognitive, motor), 18. The child’s finger is placed on a
cool object and then a warm object (thermal, tactile), 19. The child
pokes a hole in Play-Doh and then places grains of rice in it
(motor, tactile, visual), 20. The child selects a texture square that
matches the texture of an object in a photo (tactile, cognitive,
visual), 21. Different objects are used to draw imaginary circles on
the child’s face (tactile, cognitive), 22. The child places cold
straws filled with ice in Play-Doh using each hand (motor, thermal,
visual), 23. The child walks on a 2==  8==  5= board while
holding a cooled tray (thermal, balance, motor), 24. The parent rubs
each of the child’s fingers and toes in turn, while the child watches
(tactile, visual), 25. The child places coins in a piggy bank using only
his or her reflection in a mirror (motor, cognitive, visual), 26. The
child uses a magnet on the end of a small fishing line to pick up paper
clips (motor, visual), 27. The child tracks a red object that is moved
around a photo of a painting (visual, cognitive), 28. The child walks
up and down stairs while holding a big ball or pillow (motor, tactile,
balance), 29. The child draws shapes using pen and paper while the
parent draws imaginary shapes on the child’s back using a toy (motor,
tactile, visual), 30. The child draws lines using both hands simultaneously
(motor, cognitive, visual), 31. The child matches the color of
objects in a photo with colored beads (visual, cognitive, motor), 32.
The child blows a small piece of aluminum foil on the floor as far as
possible (motor, visual), 33. The child views a picture moving first
behind and then in front of another picture (visual, cognitive), 34. The
child views a photo with music associated with that scene (auditory,
visual).
Winnie
"Make it a powerful memory, the happiest you can remember."

Winnie
Posts: 4227
Joined: Sat Mar 18, 2006 2:48 pm

Re: Any feedback on Mendability?

Postby Winnie » Fri Nov 15, 2013 2:27 am

kulkulkan wrote:Here is press release that references the UC study including marketing quote from professor. Haven't looked for the study.

http://www.marketwatch.com/story/mendab ... 2013-05-29

I don't believe the two new posters/testimonials that are probably part of the social marketing. But I maybe wrong and given the low price, it may very well be worth a try. A free 15 day trial like rethink autism (online ABA using SaaS platform) would have been helpful.


Apparently the quote from the professor (UC Irvine study) was carefully inserted into the marketing press release to give the appearance that the professor was referring to Mendability. Apparently he was not.

Potentially misleading marketing -- check the title of Mendability's press release in your link -- leads one to believe the UC Irvine study was a clinical study designed to evaluate the effectiveness of Mendability -- apparently it was not.:

Mendability, a Breakthrough Clinically Proven Autism Therapy, Launches New and Affordable Autism Treatment

University of California Irvine Study Demonstrates Children With Autism Show Marked Improvement Using Mendability for Autism, a Low Cost Sensory Enrichment Therapy That Can Be Done at Home


***ETA: The connection is apparently that of Aronoff who subsequently started Mendability (no mention of what Aronoff's specific support was to the study that is thanked by the authors -- ***ETA again, study funding according to Aronoff on another site):

The study was conducted at the Institute for Clinical and Translational
Sciences at UC Irvine (Grant UL1 TR000153). We thank the Nancy Lurie
Marks Family Foundation, Eyal and Yael Aronoff, the Samueli Foundation
and the William and Nancy Thompson Family Foundation for their support.
The Aronoffs subsequently invested in a company that offers this
treatment, from which the authors receive no financial compensation.
We
also thank Harold Dyck, Robert Newcomb, and Rita Petersen for assisting
with the statistical analyses, and Ira Lott, Christy Hom, and Edna Hingco
for their help.

Correspondence concerning this article should be addressed to
Michael Leon, Department of Neurobiology and Behavior, 2205 Mc-
Gaugh Hall, University of California Irvine, Irvine, CA 92675-4550.
E-mail: mleon@uci.edu


However, in Aronoff's marketing, he states:

"Mendability is providing a practical, low-cost and effective solution to one of the nation's biggest problems, autism. This revolutionary new therapy uses Sensory Enrichment to activate innate brain plasticity, easing the symptoms of autism," said Eyal Aronoff. "We simplified a complicated protocol of prescribed sensory stimulations down to a set of games that could be practiced at home for a few minutes, two or three times a day.

http://webcache.googleusercontent.com/search?q=cache:RUrNz63BDRUJ:online.wsj.com/article/PR-CO-20130529-906734.html+&cd=13&hl=en&ct=clnk&gl=us


Therefore Mendability's altered (simplified) protocol would not be the same as that used and evaluated in the study.

It does seem to be very reasonably priced as therapies go -- but I find the misleading sales pitch, exaggerated claims, and attempt to guilt parents to spend more (most expensive level is labeled as "Best Chance for Success) pretty offensive (no info on the expertise of the staff support the parent is paying for).

Might be best to contact the study author for more details about the protocol actually used in the study (contact info above). I really just don't see any reason to pay for Mendability in order to try sensory enrichment activities (other than possible convenience).
Last edited by Winnie on Fri Nov 15, 2013 11:01 am, edited 2 times in total.
Winnie
"Make it a powerful memory, the happiest you can remember."

kulkulkan
Posts: 2075
Joined: Tue Mar 13, 2012 1:37 pm

Re: Any feedback on Mendability?

Postby kulkulkan » Fri Nov 15, 2013 2:56 am

Agreed the press release is misleading and deliberately so. I would have also taken out that cheesy quote from the parent in there. Not referencing the study and not being honest about it is a mistake. It is okay that it doesn't mention mendability - could have just gotten the professor to say that program is based on similar activities or something.

What is interesting about the study to me wasn't how well did the sensory enrichment therapy do but rather how poorly the standard therapy (control) performed. I was looking for sensory activities to try, so the study is helpful.

Dani
Posts: 2297
Joined: Tue Mar 04, 2008 5:55 am

Re: Any feedback on Mendability?

Postby Dani » Sun Nov 17, 2013 8:25 pm

Sensory enrichment is easy enough for parents to do without being suckered into Mendability. There are enough FREE websites/blogs online with information on sensory enrichment activities for children on the autism spectrum. The Mendability website is deceptive in trying to link itself to the UCI study which wasn't about Mendability at all.

I know several people doing Mendability through TACA which has some pilot program/agreement with Mendability. My friends have been at it for at least three months if not more. So far they haven't seen any big improvements in speech, cognition or social behaviors. I asked the parents what exactly they do for Mendability. They rub essential oils on their child's skin, they have the child smell a likable scent, they touch a picture, they eat something. It all sounds like well...what you do in a normal day if you're a good parent! :lol:

The two new posters who posted above in this thread were likely told to scour the internet for opportunities to market Mendability to parents of special needs children.

flutterby
Posts: 4
Joined: Thu Mar 13, 2014 9:52 pm

Re: Any feedback on Mendability?

Postby flutterby » Thu Mar 13, 2014 10:04 pm

Look, it's wonderful to approach these sensational claims made by these companies with a critical eye, Winnie, but there is no need to attack a parent for posting their opinion. Ruth's mom has probably already been through enough trying to figure out how to help her child, which is incredibly taxing and hard on the entire family. She is sharing her "opinion" so let her be. If you want to tear apart the website, then please do, but there is no need to make personal attacks.

Winnie
Posts: 4227
Joined: Sat Mar 18, 2006 2:48 pm

Re: Any feedback on Mendability?

Postby Winnie » Fri Mar 14, 2014 9:49 am

flutterby wrote:Look, it's wonderful to approach these sensational claims made by these companies with a critical eye, Winnie, but there is no need to attack a parent for posting their opinion.

It's nothing personal. Statements of fact used to explain effectiveness and describe outcome are not opinions.

If the marketing of a particular therapy rests primarily upon parent testimonials, then it is reasonable to expect questions when claiming that a young adult was diagnosed with Asperger's at 17 -- neurotypical at 19 -- making 5 years of developmental progress in just months (attributed to this therapy).

People can read the thread and draw their own conclusions -- having additional information (positive and negative) helps parents make informed decisions. Weighing the information and the risk (this appears to be relatively risk-free -- non-invasive), people may choose to give it a try.


flutterby wrote: Ruth's mom has probably already been through enough trying to figure out how to help her child, which is incredibly taxing and hard on the entire family.

Well thanks for sharing your insight with us parents. ;)
Winnie
"Make it a powerful memory, the happiest you can remember."

flutterby
Posts: 4
Joined: Thu Mar 13, 2014 9:52 pm

Re: Any feedback on Mendability?

Postby flutterby » Fri Mar 14, 2014 8:56 pm

It is personal when you address someone specifically. Sometimes, as parents, we try things and we think that something may have helped..such as a gluten free diet or occupational therapy. But how can we prove this? I think that it is really wise for you to take a critical look at an organization that may be trying to possibly benefit by exploiting people in desperate situations, but it really isn't necessary to attack people who felt the need to give their feedback based on their own personal experience. I think that you are absolutely right that people can read the thread and draw their own conclusions. You have done a great job debunking the link to the "studies", so there is no need to attack someone who feels like it may have benefited their child.

Winnie
Posts: 4227
Joined: Sat Mar 18, 2006 2:48 pm

Re: Any feedback on Mendability?

Postby Winnie » Sat Mar 15, 2014 9:57 pm

flutterby wrote:Sometimes, as parents, we try things and we think that something may have helped..such as a gluten free diet or occupational therapy.
IMO, you don’t sound like a parent – you sound like someone trying to sound like a parent. If you actually were a parent, you would realize how silly you sound informing parents of what parents think and do. (see your first post)


flutterby wrote:It is personal when you address someone specifically.
Who Ruth’s_mom is specifically is an anonymous poster on the internet, whose anonymous testimony promoting Mendability also appears on their sales site. Mendability uses these anonymous testimonies to market their product. Her only posts here (3) are those promoting Mendability. Therefore, questioning these fantastic testimony claims and statements of fact regarding Mendability’s effect on the brain should be expected.


flutterby wrote:but it really isn't necessary to attack people who felt the need to give their feedback based on their own personal experience
Just “felt the need” to give feedback based on my own personal experience via years of reading fantastic internet treatment claims and sales sites. :wink: I doubt it will cure autism in mere months, but it might be worth a money-back trial to see if the tracking and activities are helpful, engaging, and fun. Even interested to hear what parents here think about it (especially those not connected with the Mendability site). However, a parent could also use ideas from the sensory activities listed in the Woo and Leon study (free -- quoted up thread).


flutterby wrote: [. . .]so there is no need to attack someone who feels like it may have benefited their child.
It does not appear that Ruth’s_mom has any qualms about taking a swipe (or would that be an “attack” to you?) at parents who do not use Mendability:

I’ve recommended Mendability to *so* many people. The retired special ed teacher in me gets so frustrated when some of these parents aren’t willing to do a little work to help their kids succeed. Congratulations to the parents on this site who *are* willing to put yourselves out for the sake of your child(ren)’s future.
http://www.mendability.com/testimonials/
I guess we parents who haven't signed up are just too dumb to do a little work to help our kids succeed and too lazy to put ourselves out for the sake of our children's future. :wink:
Winnie
"Make it a powerful memory, the happiest you can remember."


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