Tuesday, November 23, 2010

2010 Gift Guide for People Livng with Paralysis - Spinal Cord Injury - Paralysis Research Center

2010 Gift Guide for People Livng with Paralysis - Spinal Cord Injury - Paralysis Research Center

If you're wanting to get a jump on your holiday shopping and have someone with limited mobility on your list, check out these great gift ideas from the Christopher and Dana Reeve Paralysis Foundation!

Monday, November 22, 2010

What I'm Thankful For "Getting Better"

Every year at Thanksgiving, my family and I all  take turns going around the table mentioning at least one thing we are thankful for. Here is just a peek at what I have to be thankful for this season:

 Larry and Rochelle Golden and all the wonderful Labs at Dixie Run Labradors. Larry and Rochelle bred Lucy from day one and if it weren't for their kindness and generosity we wouldn't be together. After writing letters of inquiry and making phone calls to almost 30 service dog agencies across the country only to be denied because I was either too busy with school or did not match that particular agency's criteria, My mom found out about Dixie Run Labs and Lucy became part of our family.

Even though she has her moments and I have to be a mom and discipline her now and then, Lucy is my favorite part of the day. Just waking up and seeing her waiting in her crate every morning fills me with so much excitement. I know that whatever happens, we're going to be together and get into all sorts of fun and that's the best part!

Furthermore, I have never been very good at social interaction or making friends due to Asperger's Syndrome, but with Lucy around I never feel lonely and I have constant companionship. When I was in school I was bullied a lot, even through college, but I always feel so safe with Lucy. I know she will never judge me because all she wants to do is be my best friend and  love me forever.

We are each other's best friend. We play ball together every day and take long walks and go to the park, out to eat,  to the grocery,  the mall, and even the library! Lucy's favorite book right now is Owen by Kevin Henkes. My mom read that book to me when I was little and I loved it, so I decided to read it to her. She really will sit and listen and look at the pictures, it's funny!

One of my favorite parts of our day is when I tuck Lucy into bed and sing her her lullaby, "Lucy in the Sky With Diamonds" and listen to her drift off to sleep. (I am a HUGE Beatles fan, so I decided to name her Lucy after their hit song.) When I hear my dog breathing so deep and peacefully, I know everything is right in the world, and no matter how crummy the day has been, I know tomorrow will be better because she is with me.
In the words of The Beatles:

"You've Got to Believe It's Getting Better/
A Little Better All The Time/
You've Got to Believe It's Getting Better/
A Little Better/
Since You've Been Mine/
Getting So Much Better All The Time"/


-Adria and Lucy

Assistance Dogs: No Longer a Guide Dogs Only Game

When I am out with Lucy in public, the most common assumptions people make  are that she is either a guide dog or a seizure alert dog. While I was diagnosed with epilepsy as a young child, my seizures are no longer  severe or frequent enough to require the assistance of a medical alert dog.

I can understand how people would assume that Lucy is a guide dog though, because until about ten years ago guide dogs and dogs for people with severe physical disabilities were just about the only types of assistance dogs. However, times have changed and service dog breeding and training programs are providing dogs to assist with virtually every type of diagnosis from diabetes to depression to hearing impairment.

In addition, people are just getting used to seeing a person who doesn't appear to have an outwardly visible disability   go around town with a service dog. Some people see me walking past and say, "Hey, that's a seizure dog, isn't it?" or "Hey! nice guide dog!" and I stop and say, "Thanks, but she is actually an autism service dog being trained to help with Asperger's Syndrome."

The next time you see an assistance dog in your community, remember to keep an open mind because the dog might not be trained for visual impairment or severe physical disability. There are a lot of dogs out there that help people with a lot more than just those two diagnoses now. And remember, sometimes the disability is invisible, but it's there.

If you would like to learn more about how an assistance dog can help a person with autism or Asperger's, please visit: www.4paws.org (a national service dog agency which places autism service dogs with children and adolescents on the spectrum)

Thanks and have a Happy Thanksgiving!
Adria and Lucy

Tuesday, November 16, 2010

Service Dog Do's and Don'ts

Yesterday, Lucy and I were out for our morning walk on the trail by our apartment complex when someone came forward and suddenly reached out to pet her. I always make sure Lucy wears her work vest anytime she is outside the apartment so people know that she is a working dog and shouldn't be distracted, but some people just can't help themselves.
I dealt with the issue by saying, "Sir, now isn't a good time to pet the dog she is working," and watched him go on his way. Parents, please remind your children that it is never a good idea to pet a dog they are unfamiliar with unless the owner gives permission.

While a dog may seem cute and engaging, he may not be properly trained or accustomed to people  which may cause him to get aggressive.
Americans like dogs . People like dogs Period. America has the highest rate of dog ownership in any well developed nation worldwide.   Before you  acquire a service dog for your child, be aware that people will naturally want to come up and see the dog.

Once your child understands that the dog is a working dog and not a pet, that the dog can accompany him in public and so on, sit down and ask him something like: "If someone comes up and asks to pet your dog while he is with you, what might be a good way to ask them not to do that?"  If your child is receiving a dog due to autism, consider using a social story or role playing to come up with polite ways to interact with the public when the child is with his dog. If you have another family dog at home whom your child gets along well with, consider bringing him or her into the activity as well.

It may also help to show the child pictures of service dogs in their work vests and explain to him that  when the dog  is in his vest he is working, but when he isn't, people can pet him.  For a child with autism and speech difficulty, many online sites make patches that say things like: "SERVICE DOG AT WORK DO NOT PET" etc. Even if your child is on the spectrum but has normal speech,  these patches often make things a lot easier. Many companies even make patches for specific diagnoses which can be sewn onto the dog's vest.

It may also be helpful to carry a small index card in the dog's vest pocket with the federal regulations regarding service dogs in case the dog were ever to be denied access to a public place. Under the Americans With Disabilities Act, a service dog, and in some states, service dogs in training are allowed full access to public establishments nationwide where any customer or  visitor is normally permitted. Places like Staples and Office Max will mount the card on card stock and laminate it for around $2.00

Saturday, November 13, 2010

A Little About Lucy, a Little About Autism, A LONG Post!

I realize I probably should have included some background information on Lucy in my first post but I didn't, so here goes. Lucy is a ten month old yellow Lab being trained to assist with the challenges  pertaining to my diagnoses of Asperger's Syndrome (a form of high functioning autism) and nonverbal learning disability.
She has about a year and a half to go until she is fully certified.  She will eventually assist with everyday social interactions, reduction of anxiety in loud, crowded areas, and lead me home when I am lost in an unfamiliar place. 

When she is not working her favorite games are ball and Frisbee. She loves going swimming at the lake in the summer and licking  Kongs with peanut butter in them!

It is common for individuals with autism spectrum disorders to exhibit social awkwardness, have difficulty making and maintaining age appropriate relationships, problems with conversational skills, and reading social cues etc. 

Also, people on the spectrum are often predisposed to anxiety and depression due to their difficulties with social interaction   Lucy will act as an icebreaker in social situations and new environments allowing me to feel less anxiety. She is already doing an amazing job! 

The learning disability is a bit harder to explain. In a nutshell, I have a very high verbal ability but a very low abstract reasoning ability so anything that is not verbal, for example: language, reading, writing, etc. is extremely hard like maths, telling time, counting money, or sense of direction, so Lucy will lead me home if I ever get lost, of course, from specific points. I understand not to run away from caregivers and would never be in danger of being found say, 15 miles from home. 

However, some individuals with more severe cases of autism do run away occasionally due to excitement, fear, or overstimulation from their environment. In their case, a  service dog may be taught to find them usually by smell, and return them to caregivers or, in some cases the individual may be tethered to the dog to prevent him or her from running, although this practice is controversial. 

Some service dog trainers believe that a dog should not act as a babysitter no mater how trained or well behaved he is, while others believe that the dog is not being asked to babysit, he is simply trained to accompany the individual  in public in a manner that allows for both parental peace of mind, and  emotional stability and contentment of the individual with autism.  I tend to agree.  Opinions anyone?...

Thursday, November 11, 2010

What Can Ipad Do For You?

IPad Opens World to a Disabled Boy

Michael Nagle for The New York Times
FIRST TIME Owen Cain in August with his new iPad. His mother, Ellen Goldstein, and brother, Nathaniel, helped.
OWEN CAIN depends on a respirator and struggles to make even the slightest movements — he has had a debilitating motor-neuron disease since infancy.
Owen, 7, does not have the strength to maneuver a computer mouse, but when a nurse propped her boyfriend’s iPadwithin reach in June, he did something his mother had never seen before.
He aimed his left pointer finger at an icon on the screen, touched it — just barely — and opened the application Gravitarium, which plays music as users create landscapes of stars on the screen. Over the years, Owen’s parents had tried several computerized communications contraptions to give him an escape from his disability, but the iPad was the first that worked on the first try.
“We have spent all this time keeping him alive, and now we owe him more than that,” said his mother, Ellen Goldstein, a vice president at the Times Square Alliance business association. “I see his ability to communicate and to learn as a big part of that challenge — not all of it, but a big part of it. And so, that’s my responsibility.”
Since its debut in April, the iPad has become a popular therapeutic tool for people with disabilities of all kinds, though no one keeps track of how many are used this way, and studies are just getting under way to test its effectiveness, which varies widely depending on diagnosis.
A speech pathologist at Walter Reed Army Medical Center uses text-to-speech applications to give patients a voice. Christopher Bulger, a 16-year-old in Chicago who injured his spine in a car accident, used an iPad to surf the Internet during the early stages of his rehabilitation, when his hands were clenched into fists. “It was nice because you progressed from the knuckle to the finger to using more than one knuckle on the screen,” he said.
Parents of autistic children are using applications to teach them basic skills, like brushing teeth and communicating better.
For a mainstream technological device like the iPad to have been instantly embraced by the disabled is unusual. It is far more common for items designed for disabled people to be adapted for general use, like closed-captioning on televisions in gyms or GPS devices in cars that announce directions. Also, most mainstream devices do not come with built-ins like the iPad’s closed-captioning, magnification and audible readout functions — which were intended to keep it simple for all users, but also help disabled people.
“Making things less complicated can actually make a lot of money,” said Gregg C. Vanderheiden, an engineering professor at the University of Wisconsin at Madison who has worked on accessibility issues for decades.
Representative Edward J. Markey, a Massachusetts Democrat, who wrote recently enacted legislation that will require mobile devices to be more accessible to users with disabilities, said approximately three-fourths of communications and video devices need to be adapted for blind and deaf people. “Apple,” he said in a statement, “is an outlier when it comes to devices that are accessible out of the box.”
The iPad is also, generally speaking, less expensive than computers and other gadgets specifically designed to help disabled people speak, read or write. While insurers usually do not cover the cost of mobile devices like the iPad because they are not medical equipment, in some cases they will pay for the applications that run on them.
In Owen’s case, his grandmother bought him a $600 iPad in August, and his parents have invested about $200 more in software. One day this summer, his finger dangled over the title page of “Alice in Wonderland” on his iPad while his mother hovered over his shoulder in their Brooklyn home. Then, with the tiniest of movements, and thanks to the sensitivity of the iPad’s touch screen, Owen began to turn the pages of the book. “You are reading a book on your own, Owen!” Ms. Goldstein, 44, exclaimed. “That is completely wonderful.”
But while the sensitivity of the iPad’s touch screen makes it promising for Owen, it can be problematic for others, like Glenda Watson Hyatt, a blogger in Surrey, British Columbia, who has cerebral palsy. “When ‘flipping’ screens, sometimes I flip more than one screen,” Ms. Hyatt wrote in an interview conducted by e-mail. “Or I touch what I didn’t intend to.”
Still, Ms. Hyatt said that when she was having trouble chatting with friends at a bar recently, she pulled out her iPad to help communicate and felt normal. “People were drawn to it because it was a ‘recognized’ or ‘known’ piece of technology,” she wrote in ablog post reviewing the device.
At the Shepherd Center, a spinal cord rehabilitation clinic in Atlanta, some teenage quadriplegics have received iPads as gifts, but they do not work well for those who rely on a mouse stick — basically a long pen controlled by mouth.
“It wants to see a finger,” said John Anschutz, the manager of the assistive technology program at Shepherd. “It really requires the quality of skin and body mass to operate.”
For Owen Cain, whose disease is physical, not mental, the iPad has limitations, too. Moving his finger all the way across the keypad remains a challenge, and makes writing difficult. Ms. Goldstein said its versatility and affordability, though, were a boon. He has been experimenting with a variety of applications — Proloquo2Go, which allows him to touch an icon that prompts the device to speak things like, “I need to go to the bathroom”; Math Magic, which helps him practice arithmetic; and Animal Match, a memory game.
“If all you’re worrying about is ‘I can try this program, or I can try that program, I can buy that app or I can buy this app,’ and the investment is so much lower,” his mother said, “then our ability to explore or experiment with different things is so much bigger.”
When Owen was about 8 weeks old, his mother noticed his right arm drooping. It led to a crushing diagnosis: the motor-neuron disease known as spinal muscular atrophy Type 1.A 2003 New York Times article about spinal muscular atrophy said his parents had been told Owen would be “paralyzed for his life, which doctors predicted would last no more than about two years.”
Owen will turn 8 on Nov. 11. While his condition is not expected to worsen, he is extremely sensitive to infection and once nearly died of pneumonia; three specialized therapists and a nurse help keep him alive.
Though he cannot speak, his parents have taught him to read, write and do math. He has an impish sense of humor and a love of “Star Wars.” “He’s a normal child trapped in a not normal body,” said his father, Hamilton Cain, 45, a book editor.
Since he received the iPad, Owen has been trying to read books, and playing around with apps like Air Guitar. And, one day, he typed out on the keypad, “I want to be Han Solo forHalloween.”

Hi everybody!

This is my first post on my SHINY NEW BLOG
about autism and service dogs and just special needs related stuff in general. I’m really interested in becoming an advocate for children with disabilities and their families, especially those with autism spectrum disorders as well as getting the word out about the benefits of service dogs for those with disabilities, so feel free to become a follower if you want to learn more about autism, service dogs, or just keep up with my service dog, Lucy!

Lucy is in the middle of learning to ride escalators, climb stairs and avoid distractions in her environment. The trainers and I purposely set up distracting situations by throwing a tennis ball down a busy hallway and she has to lay down and not chase it. She tried to learn to go through a revolving door yesterday, but she was too big so I don’t think we are going to teach her that, although some service dogs do know how to do them! Pretty cool, huh?