What's The Answer?

I was intially very excited when Ashley came home with a packet of information from our state agency, the Department for the Blind and Vision Impaired. It was an invitation for Ashley to attend a 4 week summer program called LIFE. LIFE stands for Learning Independence, Feeling Empowered.

The brochure said the program was to help students who are blind make the transition from high school to work or futher education. Experience would be provided in how to obtain and keep employment, how to navigate the world as a blind person, and provide opportunities for socialization and group interaction. Sounds great, eh?

Well it did until I started reading the list of qualifications. The one that concerned me the most stated that a student should..."be able to perform self-care activities with minimal supervision."

Ashley is deafblind, not just blind. She has medical issues, specifically seizures which can occur anytime day or night. Because of that, she must have someone very close by at all times. And, she must be monitored at night for seizures. The LIFE program would not provide that kind of support.

This is an issue that I have also faced with Ronnie. There do not seem to be programs that support people, especially young people, who have both a sensory disability and a physical disability/medical issues.

I have never been successful finding a camp for Ronnie. I can find Deaf camps and they aren't accessible for wheelchairs. I can find accessible camps and they can't provide a fulltime interpreter. So he has never gone to camp.

Now I am facing the same thing with Ashley. If she were just blind, she would be welcomed at project LIFE. But because she has significan medical issues which must be attended to, she cannot.

What's the answer...?

Rare Video of Helen Keller

I've written several posts in the past about a technique for teaching a person with deafblindness to speak. That technique is called Tadoma, named after two children, one named Tad and the other Oma. Really. Here is one of my posts on the subject.

Although I have read a lot about Tadoma, I had never seen it actually done. We tried with Ashley but I never knew if I was doing it correctly.

This weekend I found this rare footage of Helen Keller using the technique with her teacher, Annie Sullivan. The video is really amazing, and Helen and Annie even more so!

An After-Easter Egg Hunt

VAAPVI, the Virginia Association for Parents of the Visually Impaired had planned a beeping Easter Egg hunt for the weekend before Easter. Unfortunately, we had a week and a half of monster storms, and the egg hunt had to be postponed.

It was held this past weekend, and the weather was beautiful! The beeping eggs were made by our city's police bomb squad, and then they were 'hidden' all over the football at the University of Richmond. They even made vibrating eggs for Ashley to find!

Everyone had a blast - well, except Ashley, when the Easter Bunny tried to make nice with her :)

Please Touch

Though they cannot hear or speak, and they are the Israeli actors in the Nalaga'at full-length, professional stage performance. Their unique theatrical presentation captivates audiences by blending touch, mime, sign language and music in a show about dreams and disability.

"It's everything good theater actually is and should be and so seldom is nowadays," says Adina Tal, director of Nalaga'at Center (nalagaat.org.il), an Israeli troupe made up of 11 deaf and blind actors from Tel Aviv-Jaffa. In Hebrew, na lagaat means "please touch."

Maybe it’s because Ashley is deafblind, and maybe you won’t feel the same things I did when viewing the preview below, but it brought tears to my eyes and hope to my heart.

Enjoy and have a happy, touch-filled weekend!

Mary and Stephen

(Photo by Keith Beaty of the Toronto Star)

As a mother, I dream of all my children finding that special someone with whom to share their lives. And, I think most of them will given what special people they are (yes, yes I know – I am a tad prejudiced). But I do think that search will be more difficult for my sweet Ashley.

Deafblindness is a disability of exclusion. It’s difficult for a person with deafblindness to reach out to others, especially when those others don’t understand the complexities of the disability.

So I was especially heartened when I read this story in the Toronto Star.

Mary and Stephen have been married for 32 years. Stephen is 66 years old and his wife, Mary is 67 years old. They are both deafblind. They attended school together as children, but then life took them down separate paths. However, in a story ripe for the movies, they reconnected many years later and quickly got married.

They both speak (through intervenors) of how much they enjoy their life. Stephen even, much to Mary’s embarrassement, says “The sex is good!” And now they are looking forward to spending the rest of their lives together.

That is what I want for my Ashley.

Mary and Stephen’s only reqret? They can’t have children. Mary’s mother had her sterilized when she was a young woman.

Ashley also loves children. So I will add to my dreams for her that she will one day be a mother. I can picture it in my mind, and it is a beautiful picture indeed.

Exciting Times

It seems to me that technology to assist people with disabilities has really taken a huge step forward recently. Almost every day, I read a new article or blog post about a technological advance that is improving the lives of people with disabilities.

Since I have both a Deaf child and a Deafblind child, I am always interested in things that can help them. I've been keeping a list of articles when I find them, and today have decided to share them. It really is an exciting time! Although we have a long, long way to go, I truly believe my childrens' lives will be greatly enriched by the application of technology.

Read how Austin Seraphin believed his life changed the day he bought his new IPhone.

Visit the Alabama School for the Deaf, and it's impossible to miss the signs of a revolution that many hearing people simply never noticed.

Can the Deaf enjoy music? Indeed they can!

Do you think a Braille GPS device would help a Blind person as they travel through city sidewalks? The jury is still out on this one, but hopefully it is just the starting point for futher product development.

I do most of my shopping online these days, especially during busy holiday times. Will my Blind daughter ever be able to do the same thing? Just maybe...

And finally, some Korean designers have crafted a Braille Stapler that they claim will revolutionize the way a Deafblind person communicates with the world. Ashley is Deafblind, so this piqued my interest. But, sorry Korean designers, I'm just not seeing it yet...

Who's Really Wearing the Cranky Pants?

Although it rarely happens now, not too long ago the only reports that came home from school about Ashley were ‘bad news’ reports. Most of the time, they spoke of her negative behaviors. She was described as being in a bad mood all day – being uncooperative, and one of my all time favorites, non-compliant. (I wrote a long time ago about that compliance thing…).

But the child I would see at home was completely different. She was pleasant, smiled and laughed a lot, played with her siblings, and was just a joy to be around.

So why were things so very different between school and home?

What I figured out a long time ago about Ashley was that her feelings and actions took their cue from the feelings and actions of people, especially adults, around her. I’m sure this is true about most children with significant special needs, but I feel it is even more honed in Ashley because of her dual sensory impairment (deafblindness).

Ashley can read my moods and feelings extremely well. She was able to when she was very young, and she continues today with that skill. She’s not using visual cues to pick up on my moods and feelings – she can’t see me smile or frown or cry. She can’t hear a change in the tone of my voice – angry versus sad versus happy. But somehow she knows.

She knows when there is ‘drama’ in the house. She knows when I am feeling rushed or impatient, and when I am relaxed and happy, she is relaxed and happy. When she senses that I am sad or down in the dumps, she will snuggle or put her face just inches from mine and smile her biggest smile.

Somehow she knows.

So, could those school reports of negative behaviors and bad moods be more a description of the adults in her environment at school than a true reflection of what she was feeling?

Maybe, just maybe, Ashley is not the one who needed the functional behavior assessment and behavior intervention plan!

Self-Regulation

Our children grow and mature right before our eyes, but sometimes we might miss some of the small details. Ashley reminded me of one of those small details last Saturday!

As I mentioned in yesterday’s post, Saturday was the annual Dreamcatcher’s holiday party. The party was held at our house, which is a good size but not huge by any means. And we had a whole bunch of people packed in there! Even though we could have moved between several rooms, all the parents, all the children, and all the childcare workers ended up in our family room. Some sat on couches but most sat on the floor.

It was quite loud what with all the children and all the noisy toys turned on, and I was really interested to see how Ashley was going to handle that. When she was younger, five minutes of such a stimulating environment would have been all she could handle, and the result would have been a meltdown. But on Saturday, she sat right in the middle of the fun for two hours!

The amazing thing however came at the end of those two hours. Ashley got up, walked out of the family room and headed to the living room. In there, she stretched out on the couch with one of her vibrating toys and did a little of her ‘Stevie Wonder Stim’ – rolling her head from side to side.

She stayed there for the next hour, happy as could be, and as folks were leaving, she got up and was in a great mood.

She knew – she really knew – when she had enough of the stimulation. She knew – really knew – what to do to center herself again. Self-regulation of this sort is HUGE for a child with deafblindness, and shows real maturity and understanding on her part.

My little girl is becoming a fine young woman!

Sharing Our Dreams

This past weekend was the third annual Dreamcatcher’s Holiday Party. Dreamcatchers is a statewide support group, established many years ago in Virginia and made up of families whose lives have been touched by deafblindness. Those of us who have been with the group for many years have watched our children grow and flourish, and we are now watching a whole new group of young children and their families as they travel the path of deafblindness.

We are a non-profit organization, but one which does not generate many funds. In fact, if it were not for the generosity of our state’s Board for the Blind and Vision Impaired, we would have no funds. But even without money, I believe we would still come together periodically because the coming together is so very important to us all.

We have been there for each other during the grief that often accompanies the diagnosis of deafblindness. We have felt the strength of the parents that have come before us, and we all continue to grow into the parents that our children need us to be.

We laugh together – we plan the educational strategies for our children together – we celebrate the successes and learn from the failures – we provide emotional support in difficult times – and we are even there sharing the heart wrenching tragedy of losing one of our children.

We continue to exist on a wing and a prayer but because we have all seen the power of that prayer, I strongly believe our organization will always go forward.

Thank you to all the parents who joined us this past Saturday. Thank you for braving the cold weather – for setting aside your busy schedules for a day – for traveling many miles for some food and some camaraderie – and for sharing your beautiful children. And a special thank you to the lovely ladies of the Virginia Deafblind Project for joining us!

I hope you all have a wonderful holiday season!

Today I am thankful for the warm feeling of connectedness that comes with sharing our dreams for the future.

Hope For The Future

The belief in the inner beauty of each and every human being is at the heart of L’Arche…and at the heart of being human… We do not discover who we are, we do not reach true humanness, in a solitary state; we discover it through mutual dependency, in weakness, in learning through belonging.

-Jean Vanier, Becoming Human



I believe my biggest fear in life is what is going to happen after my death – happen to Ashley.

Ashley has made great strides in her short life. Doctors said she wouldn’t live – then said she wouldn’t walk – then said she would never communicate. From infancy, they recommended institutionalization. As my regular readers know, those doctors were very, very wrong. But, Ashley will need support throughout her life.

Just as Helen Keller needed assistance, so will Ashley. So, my challenge is figuring out how to ensure that assistance even after I am no longer able to provide it myself.

My experience with run-of-the-mill group homes is not good. Even under the best of situations, I don’t know of any group homes that are equipped or knowledgeable enough to support a person with deafblindness. My oldest son has tossed around the idea of establishing a group home, a group home done right, when he graduates from college. But that idea is mingled with a lot of other dreams he has, so I can’t count on that happening. And, I often feel that it is selfish of me to expect him to continue to care for his sister after I am gone. I know without a doubt that no one could care for her better, and I do pray that even if he chooses not to be her lifelong caregiver that he will at least stay very close to her.

I was offered a glimmer of hope last week when I read an article about L’Arche, a group that enables people with and without disabilities to share their lives in communities of faith and friendship. I’ve visited their website and like what I see there. I plan to explore this option a lot more, but I’m interested if any of you know of or have heard anything about L’Arche.

I know Ashley is just 14 years old, but the time to start planning for the future is now, not later, in my humble opinion.

Working Miracles with Sight and Hearing

As the parent of a deafblind child, I guess I should be angry that Abigail Breslin has been cast to play the role of Helen Keller in the Broadway show The Miracle Worker. At least that is what the group, Alliance for Inclusion in the Arts, is telling me. AIA wants a deafblind actress cast in the role, saying that a deaf or blind actress would be able to imbue the role of Helen with her experience.

But isn't that what actresses do? Ms. Breslin is an accomplished actress. I would expect that she would thoroughly research her role, and I believe would do a fine job of portraying Helen Keller. In fact, one of my favorite versions of The Miracle Worker has Hallie Kate Eisenberg as Helen. I liked that version even better than the one with Patty Duke, who as we know is not deaf or blind.

I'm amazed at how many news stories I have run across in the last week about the Alliance for Inclusion in the Arts and their vehement objections. I'm all for diversity in every aspect of life but really, aren't there more important things going on in the world right now?

Disability Doesn't Equate With Inability

That statement in the title of this post was made by Nancy Starnes, director of external affairs for the Washington-based National Organization on Disability upon hearing that a statue honoring Helen Keller would be placed in the U.S. Capitol's National Statuary Hall.

According to the Alabama Governor's office, a statue commemorating Keller's 1887 communication breakthrough (her "w-a-t-e-r" moment) will be the first statue in the Capitol of a person with a disability, as well as the first of a child.

Also according to the Governor of Alabama, the statue will show there are "no limits to what people can accomplish".

Hear, hear!

Check out the full story on CNN.

Today I am thankful for the adoption support group I will attend this evening.

Doing It Ourselves

When Ashley was in 3rd grade, I contracted with Dr. Harvey Mar from Columbia University to do an independent evaluation of Ashley. Dr. Mar is recognized as an expert in the field of educating children with deafblindness. Leading up to Dr. Mar's evaluation was my school district's evaluation which said Ashley was a visual and auditory learner (say what??), and then an independent evaluation by a psychologist of the school district's choosing. And all these evaluations were leading down the path to due process.

Both the school's psychologist and Dr. Mar pointed out how much Ashley loved working on computers, and both recommended that her curriculum be computer-based. Remember - this was in the 3rd grade.

4th and 5th grade passed by without a computer in sight. In middle school in our school district, every student is issued a laptop computer (assuming the parents pay a $50 insurance fee). Ashley's fee has been paid every year, and every year passes without any significant computer time for her.

Now she is in high school, and still she loves the computer - perhaps even more than ever. Still she has a school-issued laptop, and still there is no mention of a computer-based curriculum.

So, I have given up.

I will make sure that she has the computer-based curriculum she needs, a need recognized when she was just 8 years old. But I will do it at home.



Pictured is Ashley's new learning center. She has a computer which can have the fonts enlarged as much as she needs. She has Internet access to go to the web sites that interest her and that we need for 'homework'. And, even though she spends 7 hours a day at school, her real education will be coming after that and on the weekends at home.

Holding Fast To Our Dreams

This past weekend I spent time with some of our Dreamcatcher families. Dreamcatchers is a state-wide support group for families whose lives have been touched by deafblindness. Formed ten years ago, Dreamcatchers is a 501-3c non-profit organization that relies on grants and donations to exist. We have a board of directors, but they are not paid for their time. All staff time and effort is graciously donated by our families. What that means in these difficult economic times is that our group is almost broke.

Each year in the past, Dreamcatchers has held a family retreat weekend. Bolstered by grants from our state’s deafblind project, our state Department of Education, and our state’s Department for the Blind, we have been able to bring all our families together for a weekend of respite, learning and networking, all at absolutely no cost to the families. In some cases, it is the only ‘vacation’ some of our families get. But we were not able to do that this year.

This year we received no grants from the Department of Education or the state Deafblind Project. And we are waiting to hear if the Department for the Blind will assist. So, we’ve had to change our model of support this year. Instead of a retreat weekend, we are having several day-long events in three areas across the state. Our families never all get together, but at least we are doing something.

Our first of those day-long events was held this past Saturday. It was a wonderful time of fellowship, story telling, advice gathering and celebration. Parents of children with disabilities, especially parents of children with a unique disability such as deafblindness, need a connection to other parents in the same situation. Often it has been the only thing that has kept me going during times of extreme struggle.

We parents need to know that we are not the only ones who celebrate battles won but worry constantly about the war. We need to hear how others have fought insurance companies, school districts, hospitals and other medical practices and restored the rights of their children. We need to know how the everyday struggles are handled, how the sleepless nights turn into exhausting days, and how the smiles on our children’s faces make everything right.

Dreamcatcher families have been doing all this and more for each other for ten years. And even though the economy is kicking us in the behind, we will continue to do it for another ten years and longer. We are watching our children grow into fine adults. We are welcoming new families with young children, and we are rejoicing in the successes of our adult children. And, we are doing it together.

I am grateful for the friends I have made through Dreamcatchers, and grateful that such an organization exists. Here’s hoping and praying that we continue to grow our organization so more families can feel that connectedness.

Hope For Independence

I’ve always wondered how Ashley would be able to travel and live independently given both her hearing and vision loss. She has a white cane, and that helps some. But, because she is also deaf, she can’t hear oncoming traffic, the sound of a siren, a car horn, a doorbell, or a smoke alarm. So short of a sighted guide and a fulltime personal aide, I didn’t know if she would ever be able to travel and live independently. But my hopes are renewed after reading this story in the Jerusalem Post.

The Ali Hope Foundation is one of only a small number of programs worldwide to train dogs for individuals who are both deaf and blind. As noted in the news story, of those programs, most, such as Leader Dogs in Rochester, Michigan, train the dogs only as guides, not assistants or alarm messengers. "Leader Dogs are trained to guide individuals who are both deaf and blind, not to alert them to sounds," states the Leader Dogs Web site. Others teach dogs to perform both guide tasks and sound alert tasks, but separately.

But the Ali Hope Foundation is providing a different perspective and the hope of independent travel and independent living for people who are deafblind. The isolation felt by many who are deafblind can be reduced by the dogs trained by Ali Hope, and my hope is that this model will also be embraced in the United States.

Good work, Tamara Meirovich!!

Happy Birthday, Helen!

Every year the last week of June is devoted to one thing - recognition of people who are deafblind. While the purpose of Deaf-Blind Awareness Week is to pay homage to Helen Keller, the deafblind woman who was born this week, the week also focuses on increasing public awareness and understanding of deaf-blindness.

According to the Helen Keller National Center (HKNC), about 70,000 people have hearing and vision loss. More than a decade ago, Deaf-Blind Awareness Week became an event officially recognized by the Federal government, and it is celebrated annually by every state and many countries around the world.

People with deafblindness are as unique and different as people everywhere. Not every person with deafblindness is like Helen Keller, although some are. As most of my readers already know, my daughter, Ashley, is deafblind and our family is part of a statewide support group of other families whose lives have been touched by deafblindness. Here is a video of the children and their families who attended our last annual family retreat. The uniqueness of each child comes shining through!



Another organization that supports the deafblind in the UK is SENSE. They have developed an incredible website in support of deafblind awareness week, and I urge you to visit and enjoy the sensory experiences they have showcased. One of the best features of their new website is the section that shows videos that take the visitor into the world of people who are deafblind. One of my favorites is shown below, but there are also many other interesting videos.



I hope you will celebrate this week as we will – by getting back in touch with all your senses, and by learning to appreciate the beauty of everyone, regardless of their level of ability!

Happy Birthday, Helen!

Surfing - The Good and The Bad

While I surfed the web this weekend, I found two stories I wanted to share. One is very good news, and one if very bad news. First the good news:

From the HumanWare website - HumanWare, in partnership with the Washington State Office of Deaf and Hard of Hearing (ODHH), has developed a new deafblind communication system. The DeafBlind Communicator (DBC) is the result of collaboration between deafblind individuals and focus groups, professionals from both the deaf and blind communities, and HumanWare’s engineering and marketing teams. The basic DBC provides three types of communication for deafblind users: face-to-face, TTY, and SMS Texting.

Check out their website and find out more about this remarkable device that opens the door to the world a little wider for people who are deafblind.

Now the bad news:

Apparently the life of a child born addicted isn't worth much. The child's parents abused and neglected her after birth, resulting in the child's deafblindness, broken bones, and cerebral palsy. Although the parents were arrested and taken to court, the father received a 4 1/2 year sentence and the mother a 3 year sentence.

Read more about this horrible story here...I wish I could bring the little girl home with me.

The Earlier The Better

Ashley has been a student in our school district for 10 years. And for 10 years I have had to fight to get her the support she needed to appropriately develop a communication system. The fight has been exhausting, but it has been worth it because Ashley is a fluent signer now. But not all parents have the ability or the resources to fight the battles that are emotionally and physically exhausting.

Knowing this, I was excited to hear about a new study concerning communication for children who are deafblind.

A recently completed five-year study, conducted through the Schiefelbusch Institute for Life Span Studies at the University of Kansas, adapted the gestures and noises used by typically developing infants to form a communication system for deaf-blind children.

The researchers had to find a way to make the children want to communicate a need or desire, said Susan Bashinski, a principal investigator who is now an associate special education professor at East Carolina University.

For example, they made a child aware that a toy was nearby, either by touch or by using vibrating toys. Then, they would teach a child a gesture to indicate he or she wanted the toy.

"Eventually, they have an 'aha' moment where they understand that they are not just a passive member of the environment, 'I can do this action, then you can do this and interact with me,'" Bashinski said.

Currently, many deaf-blind children barely communicate until they are old enough to start learning sign language. But they often struggle with that because they didn't first learn the gestures and noises that are the foundation for communication in normally developing infants.

Those gestures and noises have been successfully adapted to help developmentally disabled children who can see and hear, a method called Prelinguistic Milieu Teaching. The new study adapted that method for nine Kansas children between the ages of 3 to 7 with varying degrees of deaf-blindness.

Working at the children's schools, researchers sought to increase the number of times the child communicated per minute and the number of gestures. The results will be published this month in the journal Research & Practice for Persons with Severe Disabilities.

The study bolsters earlier research on the importance of prelinguistic communication and emphasizes that deaf-blind children need intensive one-on-one work to begin learning communication, said Kat Stremel Thomas, project coordinator for the National Consortium of Deaf-Blindness, which supports states' work to communicate with deaf-blind children.

She said further study needs to determine if the children move on to pick up more complex communication skills. And, she said, some way needs to be found to share what was learned with those who work every day with deaf-blind children.

"All brain research shows that the younger kids are when they get appropriate intervention, the better the outcome will be, especially in literacy and communication," she said.

Did you get that, school district? The earlier the better. If you didn’t get it, don’t worry, I’ll be sure to keep reminding you!

Out Of The Dark?

If a surgery existed that might help your child’s disabilities, would you agree to it? Parents of children who are deaf agree to cochlear implant surgery daily. But what if your child was blind, and what if the surgery was experimental?

Check out this link:

Dark World May Become Brighter For The Blind

I wrote about my feelings on this subject two years ago, but what about you? What would you do?

Good Vibrations

A few weeks ago, I asked my geeky and brilliant son to invent a way for deaf people to play a piano and to ‘hear’ what they were playing. I suggested that he have each of the piano’s 88 keys emit a slightly different vibration which could be felt by the person who was deaf. The piano music would sound like it always does to people who are listening, but to the Deaf person, the music could also be ‘heard’ in the form of the key vibrations.

He said he wasn’t an inventor and then asked what was for dinner.

This week, however, news stories about two exciting technology advances for people who are deaf and blind appeared via my google alerts, and they both reminded me of the request I made to my son.

The first, Picking Up A Good Vibration, tells of researchers from MIT’s Sensory Communication Group who are designing new tactile devices that convert sound waves into vibrations so users can ‘feel’ words. This project was inspired by Tadoma, a method used very infrequently for people who are deafblind, and the subject of my post titled, Can You Feel Me Now?.

The second article, titled “Researchers develop braille for vibrating touchscreen devices”, talks about researchers in Finland who are working on a way to have a raised dot in a Braille cell emit a single intense vibration and missing dots to emit a longer, less intense vibration. That Braille cell could then be ‘read’ through touch, a touch screen on a computer for instance.

And all this is leading me back to my son tonight for some more talk about that piano!!