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.