Any feedback on Mendability?

Discuss getting a diagnosis, educational help & electronic devices and apps for autism.

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

Re: Any feedback on Mendability?

Postby flutterby » Sun Mar 16, 2014 12:18 pm

I am not informing "parents" of anything. I am addressing you and your bullying behavior. I am a parent of a child on the spectrum, which naturally gives me the ability to have empathy and compassion for those who are struggling in the same situation. Having a strong sense of community amongst others in similar situations has really helped our family navigate difficult choices by being able to bounce ideas or share experiences with one another. For example, my daughter tried neurofeedback therapy. Her special education teacher was amazed at the difference in her attention span and behavior in a matter of months. We, as her parents, know that it helped her, but I am not going to be able to come up with absolute proof that it did. It seems the biggest difference between our positions is that I do not see "Ruth's mom" as some anonymous poster, but as a mom who wanted to share that something has finally seemed to help her kid.

-Sophie-
Posts: 303
Joined: Fri Mar 29, 2013 4:08 pm

Re: Any feedback on Mendability?

Postby -Sophie- » Sun Mar 16, 2014 2:04 pm

flutterby wrote:I am not informing "parents" of anything. I am addressing you and your bullying behavior. I am a parent of a child on the spectrum, which naturally gives me the ability to have empathy and compassion for those who are struggling in the same situation. Having a strong sense of community amongst others in similar situations has really helped our family navigate difficult choices by being able to bounce ideas or share experiences with one another. For example, my daughter tried neurofeedback therapy. Her special education teacher was amazed at the difference in her attention span and behavior in a matter of months. We, as her parents, know that it helped her, but I am not going to be able to come up with absolute proof that it did. It seems the biggest difference between our positions is that I do not see "Ruth's mom" as some anonymous poster, but as a mom who wanted to share that something has finally seemed to help her kid.



Hmm, I find it odd and disturbing that you are engaging in bullying another autism parent who is simply questioning the rhetoric -and grandiose claims- made about this autism treatment.
If someone is making an extraordinary claim-like Ruth is, in this thread, I think it's absolutely essential that this be explored, investigated, questioned. I find it disturbing when people get defensive about it. To me, that's just another red flag...

I am an autistic person, and the parent of a child on the spectrum who appreciates Winnie's contributions in this thread. She is a valuable part of my community.

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

Re: Any feedback on Mendability?

Postby Winnie » Sun Mar 16, 2014 2:35 pm

flutterby wrote:I am not informing "parents" of anything. I am addressing you and your bullying behavior.
You can "address" me all you like, but questioning fantastic cure claims made by an anonymous poster on the internet to promote a particular therapy is not "bullying." If you were the parent of a child on the spectrum, you wouldn't think of trivializing bullying in such a way.

flutterby wrote:We, as her parents, know that it helped her, but I am not going to be able to come up with absolute proof that it did.
No one asked for "absolute proof." Ruth's mom claims that her daughter was diagnosed with Asperger's at 17, started Mendability at 19 which rendered her neurotypical at 19 in just months -- making about 5 years of developmental progress in mere months -- all due to Mendability.

My question is reasonable:

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?



flutterby wrote: I am a parent of a child on the spectrum, which naturally gives me the ability to have empathy and compassion for those who are struggling in the same situation. Having a strong sense of community amongst others in similar situations has really helped our family navigate difficult choices by being able to bounce ideas or share experiences with one another.
Then you should navigate your naturally awesome self on over to the Mendability Facebook page, because there are plenty of people in our community there who could use some of your "empathy and compassion" and some defending from "bullying" (your version). Apparently even from "Ruth's mom" :wink: :

https://www.facebook.com/Mendability/posts/569177189797242
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 » Tue Mar 18, 2014 9:26 am

I think that any claim can be explored without the use of sarcasm and passive aggressive insinuations that the poster is falsifying information, not to mention all the condescending eye winks. Everyone should feel welcome to have an open dialogue with other adults without fear of being treated disrespectfully.

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

Re: Any feedback on Mendability?

Postby Winnie » Tue Mar 18, 2014 2:46 pm

flutterby wrote:I think that any claim can be explored without the use of sarcasm and passive aggressive insinuations that the poster is falsifying information, not to mention all the condescending eye winks. Everyone should feel welcome to have an open dialogue with other adults without fear of being treated disrespectfully.

Well, if you had explored this claim with the lead I provided for you (indicated by :wink:), then you would know that Ruth would never have been eligible for an Asperger's diagnosis to begin with:

Ruth's mom claimed that her daughter was diagnosed with Asperger's at 17 (a few years ago), via the DSM IV.

What Ruth’s mom has written about her daughter indicates that her daughter would not be eligible for an Asperger’s diagnosis:

Ruth's mom: I had a speech therapist actually tell me NOT to use "adult" language with Ruth when she was barely verbal (about age 4). I ignored that advice and today my girl is articulate with any/everyone.
From some "experts" deliver us!!
In both the DSM-IV and DSM-IV-TR, the following condition must be met in order to be diagnosed with Asperger's syndrome:

•There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).


Ruth's mom: Neuroplasticity is about healing, reorganizing the brain. My daughter was 19 when we began Mendability. She was high functioning when we began, but never a hope for independence. That's changed. She was diagnosed under the DSM-IV.
In both the DSM-IV and DSM-IV-TR, the following condition must be met in order to be diagnosed with Asperger’s syndrome:

•There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.


I can’t explain why Ruth’s mom, as a former special education teacher, doesn’t know the criteria she claims were used to diagnose her daughter.

Nonetheless, Ruth’s mom claims that in just months of using Mendability when her daughter was 19, that her daughter was cured of Asperger’s and is now “NT.” You are free to form your own opinion. I’ve certainly formed mine.

***I do wonder, however, what Ruth – now 20 and “NT” – would think of her mother blasting her personal info and history all over fb and the internet. Is that "disrespectful?" Note that Ruth is not involved in this treatment conversation -- does she even know her mother is doing this?
Winnie
"Make it a powerful memory, the happiest you can remember."

Helper99
Posts: 1
Joined: Thu Mar 27, 2014 12:35 pm

Re: Any feedback on Mendability?

Postby Helper99 » Thu Mar 27, 2014 12:45 pm

It seems that a healthy skepticism is necessary when considering tools to help people with ASD. But I don't see a clear answer to the question, " Is Mendability a good tool to help people with ASD?". I am with a service club that helps the special needs community. A well researched packaged solution that could help our community is of great practical interest to me. If this treatment has a reasonable potential for helping, it could be a program that we could support.

basal1999
Posts: 392
Joined: Wed Sep 01, 2010 7:18 pm

Re: Any feedback on Mendability?

Postby basal1999 » Thu Apr 10, 2014 9:54 am

does anyone do anything like this? someone said there are websites for sensory stuff. does anyone have links?

this sounds like good stuff. i guess it doesn't have to be a certain sequence, does it?

is this like brain gym? i know nothing about brain gym:) just heard about it here and there.

thanks for any info,
kristin

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

Re: Any feedback on Mendability?

Postby Winnie » Thu Apr 10, 2014 10:10 am

basal1999 wrote:does anyone do anything like this? someone said there are websites for sensory stuff. does anyone have links?

this sounds like good stuff. i guess it doesn't have to be a certain sequence, does it?

is this like brain gym? i know nothing about brain gym:) just heard about it here and there.

thanks for any info,
kristin


Kristin, you can google something like 'sensory activities autism' for tons of links/ideas/materials:

https://www.google.com/#q=sensory+activities+for+autism


Otherwise, you can look at the study Mendability is using to promote their product, and use those activities/ideas:

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

(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."

basal1999
Posts: 392
Joined: Wed Sep 01, 2010 7:18 pm

Re: Any feedback on Mendability?

Postby basal1999 » Thu Apr 10, 2014 10:27 am

yes! thank you!

your quote is what got me interested...

i've emailed it to myself:)

determined-dad
Posts: 46
Joined: Mon Jun 18, 2012 8:54 pm

Re: Any feedback on Mendability?

Postby determined-dad » Tue May 06, 2014 3:53 pm

Little late responding with our experience:

We ended up sticking with it for about 3 months. To summarize our experience:

Pros
------
1. Website was well organized
2. Exercises were quick and easy to implement for a single child
3. Emphasis on charting progress after each exercise was helpful
4. All three of our kids (5yo ASD, 3yo NT, 2yo NT but some sensory issues) enjoyed the exercises and the 5yo did improve in sensory regulation
5. No additional charge for tracking multiple kids

Cons
-----
1. It might be pricey in some situations. If properly implemented we felt like it was a much better value than we've gotten from some of our private OTs but it seems like many of exercises could be easily implemented without the need for the tracking system

Why did we stop?
Time. The $$$ weren't a major issue for us but trying to handle three kids one of whom is ASD meant certain times of day (morning, bed time) it can be difficult to consistently do the exercises and still take care of everyone. They have a pause feature that lets you keep your account open but stops billing you so we opted for that. Depending on how other interventions go we might go back to this in the future when schedules aren't so chaotic.

Tosca
Posts: 1
Joined: Wed Jul 06, 2016 5:59 pm

Re: Any feedback on Mendability?

Postby Tosca » Wed Jul 06, 2016 6:15 pm

Thanks Winnie for your detailed participation. I am always skeptical with miracle products or therapies but sometimes I don't have the energy to do the research...and you did quite an extensive one...


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