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!

'Knee'ding Some Advice

Ronnie is struggling with his braces and crutches. He has said many times that he wants to walk, and because of that, I ordered the full hip to foot braces and a set of crutches. But as therapy approaches each week, and anytime I tell him that it is time to practice walking, he balks. He will tell me that he doesn’t like therapy and doesn’t like walking, but once we are there, he tells the therapist he likes walking. Teenagers!!

I think the reason he is so torn is that learning to walk is hard. And, in my experience with four other teenaged children, tackling something hard is not their first choice. I need to help him understand that while it may be difficult right now, the end result is something he has really wanted for a long time. Unfortunately, that end result may be well into the future. So there’s that teenager thing again – learning to walk with braces and crutches doesn’t provide instant gratification.

When Ronnie is at school, he uses his wheelchair exclusively. When he is at home, he likes to stay out of the chair and scoot around the house on his knees. He’s very good about vaulting himself up into chairs, onto the couch, or into the bathtub. But when he leaves those places, he also vaults himself onto the floor onto his knees. And his knees are starting to complain.

He told the therapist last night that walking was making his knees hurt. After a thorough exam, the therapist convinced him that walking was not the problem, scooting and landing on his knees was. I am going to get him some heavy duty knee pads – the kind like contractors use when laying floor – but he has some decisions to make.

Does he want to walk around the house or roll around the house? I worry that he will choose rolling and over time, severely limit his options for anything else. And the last thing I want is for him to regret never having learned to walk – a regret this his teenaged self may not realize at this moment.

So here I am asking for advice again. Have any of you faced a similar issue, especially with the braces and crutches, and if so, how did it all play out with your child?

Special Exposure Wednesday

My bathroom renovation is moving along, but I am really, really hoping that it will be done by this weekend. Call me a selfish mom, but I do not like sharing a bathroom with three boys!

Dreams Evolved

There was a marathon on TV this weekend of the show “Say Yes To The Dress”. The show featured brides shopping in one of New York’s priciest bridal salons in hopes of finding their perfect wedding dress. I watched a few episode before overdosing on words like mermaid, ballgown, bling, and “it’s just not me.” But, during the shows I did see, every single bride, during their short recorded monologue, said “This is how I always dreamed my life would be.”

Admittedly, most of the brides were quite young and their lives up to the point of being recorded for the show probably were living their dreams. Many, maybe even most, young girls have similar dreams – meeting a soul mate, getting married in a beautiful ceremony in front of family and friends, and then continuing the dream with a perfect marriage, a perfect house, 2.5 perfect children, etc. etc.

And I was one of those young girls. I had my life mapped out by the time I was 16 years old. My marriage would be wonderful and special. I would stay married like my parents for scores of years. My children would be smart, well-liked, and well-behaved. I would have the house with the white picket fence and a dog and a cat in the yard.

SMACK!!!!!

That was life giving me a wake up call soon after getting married. My ex-husband turned out to not be the man of my dreams. He was an abusive alcoholic. We didn’t have the house with the flowers in the yard. We had a bankruptcy filing. I didn’t have friends because I felt I needed to hide the horrors of my life. And, it would take 14 years before I realized my dream of having a child.

That, I now know, was my life-in-training. My dream has been realized although it is pretty different than the dream of my 16 year old self.

I now do have the house of my dreams, a house that is very-well suited to the children I have. I have five children, the gaggle that I did always dream of. I have a good job, though it does wear me out most weeks. My children and I have friends and neighbors we adore, and even though disability is a constant in our lives, we are happy and content.

So, my life has evolved into a different dream, but one that has made me happier than I ever thought possible. How about you? Did you have dreams that came true, dreams that evolved, or dreams still waiting to burst forth?

Under The Big Top

We ended up Spring Break with a trip to see the circus. Ringling Brothers was in town and had set up in our city's coliseum. The kids and I had been in previous years, and had a pretty positive experience, from an accessibility standpoint. Unfortunately, this year was a little different.

Parking was good. There was plenty of handicapped parking right across the street from the coliseum. Unfortunately, the curb cuts on either side of the street did not match up. We had to go from the corner of one street, walk through traffic, and then head to the other end of the block to find the other curb curt. Fortunately, there were police officers close by who helped us navigate the traffic.

We had great seats, and I do appreciate the coliseum staff making those seats available for us. Unfortunately, getting to the seats was quite a production, and whenever anyone needed to visit the restroom, the production continued. Plus, the only bathroom available for us was one men's restroom. Let me just say, I'm glad I'm not a boy. It was filthy and roach infested.

The staff on hand to help us were absolutely wonderful though. They are what made the experience a positive one, and had it not been for them, I'm not sure we would have stayed. But stay we did, and here's a sampling of what we saw:

Spring Break - Ashley Style

It was a week for catching up on sleep, being spoiled by Miss Amy, some crafts, wearing some new clothes, cookie baking, and a trip to the dentist. All in all, not a bad week!

Here are some pictures of one of Ashley's creations. It is a light fixture made of chicken wire, tissue paper, glue, ribbon and whatever sparklies she could find. We need to buy the light kit and a hook to hang it from her bedroom ceiling!







And of course, applauding yourself for a job well done!



Here are the cookies - brown rabbits and multicolored 'eggs'. Big brother, Ronnie was a HUGE help!





And finally, the dentist. Ashley was VERY good, and even tolerated X-rays. Never - never in 16 years has that happened. She was so proud that she carried a copy of the x-ray home with her!





Saturday brings a trip to the circus, and Sunday, big sister Jessica is coming home for dinner. Then it's back to the salt mine - er, school - on Monday!

Hope you have have a wonderful Easter weekend!

A VOPA Victory

If you were the family of James Roots IV you would surely want to know why he was allowed to die in the institution that promised to help him. You would want to understand why he was held in restraints for over 30 hours, even after he complained of being unable to breathe.

If you were the family of a patient at a so-called training center (read institution), you would surely want to know why he was allowed to swallow two latex exam gloves and subsequently die.

If you were the family of another person at that same training center, you would surely want to know why your family member’s ear was chewed off and where the staff were that were supposed to ensure such incidents never happened.

But the families of these three people were not told anything. They wanted details and the details were withheld. Then, with the assistance of the Virginia Office for Protection and Advocacy, legal proceedings were initiated demanding that the records be shared. The state agency in charge refused, and the circuit court in Virginia stood with the state agency.

But the wonderful staff at VOPA refused to let that deny the family members their information. The case went to the Supreme Court of the US and yesterday, that court ruled in favor of VOPA. Read the story of this historic decision here.

VOPA has been a Godsend to my family, and especially to my Ashley. I’ve written about them many times over the years, but here is one such post.

I applaud these champions of Virginians with disabilities. You continue to make a positive difference, and I am so very proud to count myself as one of your ardent supporters.

Special Exposure Wednesday

All the pollen wasn't enough to aggravate my allergies and sinuses, so I decided to have the little bathroom off of my bedroom (it's too small to call it a master bathroom) remodeled. Now I have that dust to add to the pollen. Pass the tissues please...

Carly's Voice

I don't know how I've missed this until now. Take a look at this video and let me know your thoughts. You can also visit Carly's website at www.carlysvoice.com

Get The Story Straight

It's been a crazy few days for Ronnie. Ronnie has a friend (a girl) - I'll call her Friend Girl for this post - who is rather troubled. Friend Girl is in a foster situation although she is 18 years old. I know almost nothing about her except that she is Deaf, and she was placed in a therapeutic foster home in Virginia from Texas.

Friend Girl has attended a couple of the same events as Ronnie. She also came to Ronnie's birthday party. Ronnie and Friend Girl are in school together, and both are fluent signers.

The middle of last week, Ronnie got some desperate text messages from Friend Girl saying she hated her foster mom and had run away. She said she wanted me to be her mom, and Ronnie, bless his heart, said he would be happy to share me with her.

I urged Friend Girl (through texts) to go back home or to go to a friend's house. She kept wanting to come to our house, but I told her that wasn't possible.

Several days later, and after involvement by social workers and the police, Friend Girl ends up in the mental health crisis unit for our county. The worker there calls me and said Friend Girl wanted to come stay with us. I explained to the worker why that wasn't possible, and I suggested that she get some intensive help somewhere. The worker agreed, and left to try to convince Friend Girl to go to the hospital.

We heard nothing for a day, and then we got some phone calls via an interpreter for Friend Girl. She was indeed in the Mental Health Crisis Unit at St. Mary's Hospital, and she wanted Ronnie to visit her.

I was willing to take him, and asked the on duty nurse if that would be possible. She said no, visitors had to be at least 18 years old. Then a little while later, I get a phone call from the hospital saying that the doctor had given special permission for Ronnie to visit. So after dinner, we loaded up his wheelchair and headed to the hospital.

We were buzzed into the foyer of the unit (there is a lot of security on a psych ward), but were then told we could not visit. I argued my case, asking why first we were told we could and then we were told we couldn't. The nurse on duty at that time said nothing but "I'm sorry, you can't come in."

You know, I can understand not being allowed to visit, and I was surprised that we were told we could. But I'm really not happy that they played with the emotions of two children. Ronnie has been worried sick about Friend Girl, and to believe he would be able to see her and then denied that gift was a horrible blow to him.

As an adult who has had many, many dealings with hospitals, I really wasn't surprised at this ineptitude. But Ronnie has not had to deal with this before, and it broke my heart to see him disappointed.

Please keep both Ronnie and Friend Girl in your prayers.

IEP Squared

One week - two IEP meetings - I'm tired but very glad that all is done for another year.

Ashley's IEP meeting was today. If you've been a longtime reader of my blog, you know that Ashley's educational program has been a challenge. Throughout the years, I've had to file complaints with my state education department and also dealt with a due process. For every year things would go well, there would be two horrible years. But all that was before Ashley went to high school.

She finally has a teacher that is well-versed in teaching children with deafblindness. She cares and she has high expectations for Ashley. Last year and this year, Ashley has made more progress than she made during the whole rest of her school career.

Today's IEP meeting went very well. Everyone was in agreement as to what Ashley needed, and Ashley's teacher did a wonderful job of creating an IEP - the best IEP Ashley has EVER had!

Ashley will be staying in our neighborhood school. She has made many friends, and will continue to see those friends next year. She will be receiving ESY services. She will be getting all the related services she needs. And I didn't have to fight for any of this.

I wish it hadn't taken so many years to get to this place, but I am so very grateful that we are here now. I'm hopeful for Ashley's future, and I know that other people are also. It really does a Mother's heart good!

So thank you, Selene, Angela, Scottie, Nancy, Dan, Maurice, and all the other participants. This is how education should work. I am proud of Ashley and I am proud of her IEP team!

What a Difference a Year Makes

What a difference! Last year’s IEP meeting for Ronnie included 20 people, 2 of whom were attorneys. The meeting was contentious to say the least and ended with Ronnie’s former guardian ad litem being removed from the school premises by the county police. This year – 5 people, all smiling, all in agreement, all satisfied with the final IEP document and all the decisions that were made.

Instead of listening to the guardian ad litem talk about what a poor, mentally retarded child Ronnie was, I heard this:

• He has made such progress this year!


• The test results from before that showed he was borderline to moderately cognitively impaired were all invalid because the tests that were used were not normed for a child that was deaf.


• Any deficits he does have in reading and writing are due in part to his deafness and use of ASL and in part to his not receiving appropriate services in the past.


• He’s the happiest kid at the school!


• He wants to go to the culinary arts technical center, and we think he should.


• He’s the best basketball player on the team.


• We’re so proud of him!

Of course, Ronnie and I were both beaming through all of this.

There are going to be some changes in his program, but he and I agree that they are changes for the better. For example, my school district has had Deaf children (both oral and signing) spread throughout the county in several different schools. A new high school just opened this year (described by one person as a palace), and it will house the entire Deaf program. While I am a staunch advocate for children with disabilities going to their home schools, it does make more sense for Ronnie to be in a Deaf culture environment, an environment where he doesn’t have to struggle to communicate with his peers.

The new high school is just a little further away from our home than his current, very old, campus style school. The new school is not a campus school, meaning he will not have to contend with hilly sidewalks and bad weather while traveling about the campus in his chair. All his Deaf friends that currently attend the current school with him will also be moving to the new school.

He is excited and so am I. He is also going to tour the school and report back to the administration staff where any improvements in accessibility can be made. We also agreed that he would create a year-long project involving students with disabilities, and that as a result of that project, he would apply to be a delegate to our state’s Youth Leadership Forum next summer.

Oh, and he also said he is ready to learn to drive!!!

Fun times ahead, and I am so very proud of him!!!

Special Exposure Wednesday

How do you know you are in Virginia in the Spring?

Well, it could be the neon glow that surrounds you. It could be the exponential increase in the sale of facial tissues. Or it could be your car, your driveway, and your porch look like this:

Lip Smacking Good

I need some advice.

As some of my long time readers know, I believe in teaching my children manners, and I expect them to use what they have been taught. I do take into account that their disabilities may impact their use of manners sometimes, but most of the time I have found that my children with disabilities can use proper manners just as effectively as my children without disabilities.

But, I’m having a tough time teaching Ronnie one thing in particular. He makes a lot of noise when he eats.

I’ve always taught my children to chew with their mouths closed. I don’t think it is appropriate to make a lot of lip smacking noises when eating. And before you lecture me on how that is a quite acceptable practice in other countries, I remind you that we don’t live in those countries, and it is unlikely we will ever visit there. If we do, I will let my children make as many mouth noises as they like.

But in the meantime, I really, really don’t like the sound of someone chewing with their mouth open.

Here’s the rub. Ronnie can’t hear the noises that he makes since he is deaf. Every time I remind him to chew with his mouth closed, he looks at me like I have four eyes. I tell him that he is making lots of noise with his mouth, and he looks at me like those four eyes have turned to six.

I know that eventually he will catch on, but eventually could take a long time like it did with my now 18 year old son, Corey. I’m looking for a quicker fix though.

So, if you have any ideas or techniques, please share!

(p.s. And I know there are a lot worse problems in the world than making noises while one eats, but today, this is the issue I chose to discuss – you know, that whole ‘this is my blog’ thing….)

A More Accessible America

My boys and I like to go to baseball games. We've been to Baltimore for the last two years for an Orioles game, and we have season tickets to the Richmond Squirrels baseball team. But, finding accessible seating seems to always be an issue. I wrote a blog last year about the Richmond ball park.

But all that should now change with the revised and expanded Americans With Disabilities Act. The regulations apply to the activities of more than 80,000 units of state and local government and more than 7 million places of public accommodation, including stores, restaurants, shopping malls, libraries, museums, sporting arenas, movie theaters, doctors’ and dentists’ offices, hotels, jails and prisons, polling places, and emergency preparedness shelters.

The 2010 standards also include, for the first time, standards on making swimming pools, parks, golf courses, boating facilities, exercise clubs, and other recreation facilities accessible for individuals with disabilities. Entities covered by the ADA have until March 15, 2012 to comply with the revised standards.

I suggest you visit the Department of Justice's ADA website for more details.

(Although this is a move in the right direction, I am really worried about where things are going with the Federal budget. I fear the next areas to receive cries for cuts will be the entitlement programs like Medicaid. Having accessible seating at the baseball park means little if my children can't receive the medical care they desperately need.)

Caught My Eye

Here are some news stories that caught my eye this week. Hope you all have a wonderful weekend!

Miami Gallery Allows Hands On Art to the Blind

New Technology Allows Deaf and Blind to Experience Movie Theatre

Beeping Easter Egg Hunt

Disability Prepared Project from the University of Kansas

And finally, this video from the Academy of Country Music Awards which was held last weekend. Get out your tissues....

An Apple A Day

Do you have a favorite doctor? How would you describe him or her?

As parents of children with disabilities, we see a lot of doctors over the years. Some good – some not so good. But along the way, we usually find one or two that we trust completely. When I meet a parent with a young child and they are searching for doctors and specialists, I’m always reluctant to make a recommendation because my criteria for ‘good doctor’ might be different than theirs.

So I’m curious. What characteristics do you look for in a doctor? If you have a doctor you love, what’s special about them?

I’ve met a lot of good doctors since I first adopted Ashley 14 years ago. Here’s some examples, and these are definitly doctors I would recommend to new parents:

Dr. G was the pediatrician I first saw the week after I brought Ashley home. He was quirky and wore socks with his sandals. He played games with his patients and talked to them, not just to me. He trusted my opinions, and even asked for my thoughts. When my mother passed away and Ashley was marginally ill, he noticed I was super stressed and had Ashley admitted to the hospital ‘for observation’. Really it was just to get me some help for a few days. Dr. G also testified at my due process hearing when I was fighting for ESY services for Ashley, and he was one of the primary reasons we won that ESY battle.

Dr. M was also in the pediatric practice Dr. G was in. My first encounter with Dr. M was when he was convinced that he could get Ashley to take her medicine, medicine that I struggled to administer 3 times a day, every day. He told me that I should not put it in her bottle. So, I asked him to show me how to do it. After 30 minutes and a battle that left him scratched and bitten, he told me it would be ok to put her medicine in her bottle :) Dr. M would go from that point to the point of being the most skilled doctor at drawing blood from Ashley. She would sign ‘good job’ after every time he drew that blood. He came to understand her like no other doctor has. He won her heart by letting her play with his watch every time we showed up for an appointment, and when he retired, he gave Ashley his watch to keep. She still has it in a special place to this day.

Dr. T also saw Ashley the first week I brought her home and continues to see her today. His bedside manner leaves a lot to be desired, but I always felt he was the best at his specialty. I opted to give up bedside manner for skill. Once several years ago, he decided that his gray hair was making him look old, so he dyed it jet black. Ashley went in for an appointment and was scared to death because he looked so different! A year or so later, I would have to convince Dr. T that Ashley needed an MRI to check for brain tumors. She had previously had 2 tumors removed and her increasing seizures had me worried. He didn’t think it was necessary, but ordered the MRI anyway to make me happy. The MRI revealed three new brain tumors. Dr. T called me just hours after the MRI and made all the arrangements for Ashley to see a neurosurgeon the next day. I could hear the worry in his voice, and from that point forward, he and I have an understanding. He trusts me and I trust him. He’s working on his bedside manner, but he has never wavered from being the most skilled doctor of his specialty.

Good doctors are sometimes tough to find, but no parent should worry about switching doctors when necessary. Your child will signal to you when they are comfortable or uncomfortable with a particular doctor. Let them be your guide...

Special Exposure Wednesday

I can tell it's Spring by the flareup of my allergies and by the sprouting of my herbs.

My parsley...



My rosemary...



And my chives...



This isn't an herb, but I love the color of the flower. It matches my bedroom!

If Only

Ashley’s elementary and middle school years had more downs than ups. Every single one of her teachers were inexperienced in how to educate a child with deafblindness. Some teachers gave it their best shot but still came up short, and others just decided to let the school year pass as quickly as possible hoping their role would end before my anger erupted.

But high school is different. Ashley is currently in the 10th grade, and for both this year and her 9th grade year, she has had a great teacher who is sincerely interested in learning all she can about deafblindness.

This teacher has completed several college level courses on deafblindness since she found out Ashley would be her student. She goes to every training she can find to hone her skills. And the benefit to Ashley is obvious. Ashley is doing very well in school, and her academic and social advances are obvious.

Here’s some text I got in an email from the teacher about Ashley’s upcoming IEP meeting:

"Also, you might notice that the accommodation page is lengthy. This is in part due to some wonderful information that I learned at my training. Robbie Blaha (our trainer and guru on the Calendar system) found that by putting how to work with a child that is deafblind in the accommodations page that everyone who interacts with the child knows exactly how to most effectively. It is very specific and consistent. Again, after looking at the accommodations, please let me if you have any other strategies that you think should be added or if there are some you feel need to be deleted or changed. Some of the goals I have kept the same as the overall goals are based specifically on how children should be taught and how to ensure that they access their environment. I did tighten up on the percent of mastery and communication. "

Whoa! Everyone working from the same page? Expecting more mastery and communication? Asking my opinion? I feel like I’ve died and gone to Heaven!

I can just imagine how much farther along Ashley would be had she had this type of support through all her elementary and middle school years. Now, here’s hoping we can pack in enough education in the high school years to truly pave the way for Ashley’s success.

Paralympian in Training

Saturday was Paralympic Experience Day in our city. Sponsored by the US Paralympic team and Sportable, the local organization that runs the wheelchair basketball team on which Ronnie plays, athletes with disabilites were invited to try out some of the paralympic sports.

Ronnie had a blast!

He tried track and field events, including the javelin throw. He did such a good job that the Paralympic coach said he should definitely consider competing.



He also tried the racing wheelchairs and even had a chance to race Anjali Forber-Pratt, the world champion in the 200M and double bronze medal holder from the Paralympic Games in Beijing, China.





Ronnie really is athletically talented, and I can see him participating in the paralympics one day. We will start that journey with his participation in the 2011 Mid-Atlantic Wheelchair Games, held in June of this year.

Caught My Eye

Here is a list of news stories that caught my eye this week. Hope you all have a great weekend!

This app for the IPad looks very promising. I’m going to ask Chip to buy it so we can test it. I’ll let you know how it goes.

iASl Translates English to American Sign Language

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The Department of Justice settled a lawsuit with yet another hospital that failed to provide adequate sign language support for patients. All hospitals should realize by now that they MUST provide this support unless they wish to fight the next lawsuit…

DOJ and Inova Settle ADA Lawsuit

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This University of Colorado student has his sights set on being the first Deaf NFL coach, and I think he will realize his dream!

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Colleges and universities should be the first to ensure accessibility for people with disabilities, in my opinion. Unfortunately, they are often not even close to that goal…

Blind Students Oppose College's Use of GMail

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A simple yet very effective idea…

Safety Dots Help Blind Get Around

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And finally, a feel good story to start your weekend – Deaf sign-language choir, disabled youth feel the music in Venezuelan teaching program