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.