DMV Hell

Yesterday I went to Hell and back - twice. Yes, that would be our DMV office (Department of Motor Vehicles).

All I wanted was ID cards for Ronnie and Ashley. It will be a while before Ronnie has a driver's license, and Ashley never will have one unless some new technology allows a blind person to drive, so I wanted something official with their picture on it.

I thought it was a fairly simple and straighforward process. Chip looked up on the DMV website what documents we would need (a lot!), and printed out forms to be filled out. We were the first customers of the morning, and because I was so organized, or at least as organized as the DMV website told me to be, we were assigned the first clerk at the DMV within just 60 seconds. His name is Mr. Chuckles. Well, not his real name, but the name I have assigned to him. I and two of my children have dealt with him in the past, and trust me, the sarcastically assigned name of Mr. Chuckles fits him to a tee.

Mr. C started reviewing all our paperwork, turned pages over and over, typed into his computer monitor, and finally said, "I have a problem here." When I quizzed him as to what the problem was, he said I needed a court document showing that Ronnie and Ashley had had their names changed. Seeing as I adopted Ashley over 16 years ago when she was 2 years old, I have no idea how she got into the DMV 'System' with any name, much less her birth last name. Mr. Chuckles wasn't in the sharing mood, and wouldn't tell me anything other than I needed the court papers. I retorted that it would have been nice has such information been on the DMV website, but Mr. C just gave me the blank stare he has obviously spent many years perfecting.

So off we went, back home to find copies of the final adoption papers for Ronnie and Ashley, papers which also addressed the name change. Then it was back to DMV for a repeat of the morning's process except that now it was very crowded and the wait time was long. The good news is that we weren't assigned to Mr. Chuckles.

Our newly assigned clerk took all the papers I had brought, keyed everything into her computer (surely there has to be a better way..), and then said she was going to take Ashley's and Ronnie's pictures. It was all good until the clerk kept asking Ashley to look up at the light. I kept reminding the clerk that Ashley was both blind and deaf, but that seemed to not be sinking in. She took probably a dozen pictures when finally I looked at one and said, "that one's good enough." Then it was Ronnie's turn. As with Ashley, we had specifically asked for HEARING-IMPAIRED id cards - sort of a clue that neither one could hear. But the clerk continued to speak orders to Ronnie, who just sat there and smiled. While there may not be many blind people who frequent the DMV, I feel pretty confident that Deaf people do. Is it this difficult for every Deaf person who needs to do business with the DMV?

Eventually we finished, paid $10 for each ID card, and were sent on our way. We were told the cards should arrive in the mail in about 10 days. Sure hope that is true...I don't think I can take another visit.

Danceability

I love this group, and so wish something like it could be formed where I live.  I bet Ronnie and Ashley would love to participate!

Special Exposure Wednesday

The Happy Tail tale continues. Thanks to my very smart friend, Amy, we found Vetwrap at our local feed and seed store. Cooper's Happy Tail wasn't healing, so we wrapped it in gauze and Vetwrap. Hopefully it will now have a chance to get better. Unfortunately, he seems afraid of his red tail now. Every time he glances behind himself, he jumps when he sees his tail!

Just 26 People

How insanely cool is this?!  Now if I can just find 26 people who each have $1000 and want to share the experience of a lifetime...

Really?

About 6 months ago I applied for social security disability for Ashley. The application process was very confusing, but fortunately the person assigned to her case was very helpful. She explained the process to me and got information about all of Ashley's doctors and schools which she had attended. She also told me that it would take a while because her office would have to contact all those people, and there are indeed a lot of them, and once they heard back, she would be back in touch with me.

Finally last week, 6 months after our original conversation, I heard from her. She told me that Ashley would need to see two doctors of their choosing, and that information about the appointments would be mailed to me. I admit I was a little confused, but in the interest of keeping things moving, I said 'OK'.

I got the paperwork in the mail last Friday. Ashley is scheduled to see both an eye doctor and an ear doctor. Now I really am confused. Is social security doubting that Ashley is deafblind? Were the reports from her eye and ear doctors not sufficient? And honestly, if anyone from social security would just meet Ashley, the fact that one of her eyes is totally white and the only way she can see with the'good' eye is to bring something about an inch away from it would make it more than obvious that she is blind, and if they stand behind her and yell, they would have no problem understanding that she is deaf.

So, confused we will go to the two doctor appointments. At least I do need to give social security props for choosing doctors that are not too far away from our home...

No Limits

I think we need to send this to every school superintendent in every school district in the U.S. What do you think?

Supplying the School

When you have children with significant disabilities and medical issues, the term 'school supplies' takes on a whole new meaning. Yes, we need a few of the regular things - markers, folders, glue sticks, etc. But we also need:

• a spare g-tube
• lubricant for the spare g-tube in case it must be used
• bottles of medicine
• syringes for administering the medicine
• signed forms from the doctor saying it is ok to administer the medicine
• extra catheters
• lubricant for the catheters (different than the lubricant for the g-tube)
• child and adult sized incontinence products
• wipes and more wipes
• tissues to further the misconception that they will help keep my children from catching illnesses
• hand sanitizer (see above)
• clorox wipes (see above)
• Afrin nasal spray for stopping out-of-control nosebleeds
• feminine hygiene products and ibuprofen for when those feminine hygiene products are needed
• several extra pairs of clothing
• the all important lists of all the doctors, diagnoses, surgeries, medicines, preferred hospitals, and insurance information that must accompany my children wherever they go
• and all the other stuff I just can't remember right now but will remember as soon as the bus pulls away from our house that first day of school

What about you? What does your school supply list look like?

Special Exposure Wednesday

Chip got one of those pillow pet things for Ashley last weekend.  It was her favorite character of all time - Tigger.  She looks drunk with happiness here!

Losing It

Ashley and I have faced a lot of challenges this summer, but the biggest challenge of all has been the parade of aides through our house and our lives.

At the end of last year, Ashley finally got a slot on our state's Medicaid DD (Developmentally Disabled) waiver. The waiver provides services for Ashley that she hasn't been able to access in the past - things like home environmental modifications, day support programs, employment assistance, and assistive technology. Prior to getting the DD Waiver slot, Ashley did have a few services through another waiver but just not as many as the DD Waiver provides. So, we were excited to get the slot. But that excitement has waned a bit.

Prior to the DD Waiver, Ashley did qualify for the services of an in-home aide. I was able to hire the aides, and with the assistance of another Medicaid program, was able to pay those aides $15 an hour if they knew sign language. It was still tough to find people who knew sign language, but the hourly rate (an increase from the $8.87 paid normally for an aide) did help. Aides provided by the DD Waiver, however, can't benefit from that $15 an hour rate. I use an agency to provide aides, and the agency pays $10 an hour (still a slight increase over the $8.87). Even $10 an hour, though, does not seem to buy the services of anyone who knows sign language.

And to complicate things further, I was told if I didn't use the aides on the DD Waiver, Ashley might lose her slot totally. So, I can no longer find my own aides and get the $15 an hour rate.

What all this has meant to Ashley is that she spends her days with people who have no idea how to communicate with her, people that stare at her blankly when she tries signing her needs and wants to them. Here's an example from last week - Ashley wanted some toast with butter. She tried signing it and the aide didn't understand. Ashley then got up, went into the kitchen, opened the refrigerator door, and reached for the butter. The aide moved between Ashley and the butter, and kept telling Ashley no. Ashley kept signing, and finally started signing that she was angry and frustrated. Still the aide had no clue what Ashley was trying to say, and Ashley then bit down on her lip really hard causing it to bleed profusely. Ashley got her point across finally but at the cost of an injury.

Anyone who has witnessed a similar situation can probably predict what will happen with Ashley if that becomes a permanent situation. She will regress and stop using her sign language, and she will revert to using behavior to communicate. With enough years of that, and I am worried about her adult years when she will potentially spend the majority of her time with people who cannot sign, she will retreat inside herself and lose all interest in life. I've spent 16 years drawing her out of that inner world, and it breaks my heart to think she will return to it.

I'm not sure how to remedy this situation. At least Ashley will start school soon and will have the appropriate sign language support for most of her day. But I have to get this resolved before Ashley graduates. I don't know where to start, but I will start asking around to see what I can find. If any of you have dealt with a similar issue, I would love to hear your feedback.

Skins!

This year, the Washington Redskins decided to move their training camp to Richmond, VA - our home town. It was a huge deal for the city, and city leaders agreed to build a wonderful training facility for the team. It's worked out well for the both the team and the city. Each day of training brought an average of 20,000 to observe. Last week, the wheelchair sports organization that Ronnie is involved with held a special day at the camp for all the athletes. To say Ronnie enjoyed it is an understatement. And Chip got some great pictures! Enjoy...

EEE-I-EEE-I-O

Just because it's Friday and I needed a smile....in fact, I could not stop smiling through this whole video!!

Teacher Sings Unexpected Song and Slays It

Not So Happy Happy Tail

Imagine going to pick up your dog from doggie daycare and as usual, he is thrilled to see you and starts wagging his tail frantically. Then imagine that his tail looks like a paintbrush at the end, and he is painting the daycare worker's leg with blood. Yep, your dog has "Happy Tail." I swear, that is exactly what is called. It happens frequently to large dogs, especially labs, because their long, strong tails seem to never stop wagging. They can clear a coffee table in seconds or knock a toddler off his feet - all in the name of love and excitement.

So off to the vet we went. In severe cases, doggie parents have had to make the difficult decision whether to amputate a portion of the tail if the injury never heals and risks infection. Fortunately, Cooper's tail wasn't that bad yet. The vet said he didn't need stitches, or worse, but advised up to not let him wag his tail so much. Say what????!!!

For the next few days at least, we will try to be a little low key, no 'How's the puppy boy....good dog...good dog....yea, that's right...Cooper, Cooper, Cooper pooper", no overt excitement or rolling around on the floor with him. Maybe we can just be calm, and maybe, just maybe if his buddy, and our other dog, Lewis, will settle down a bit, Cooper's not so happy happy tail can heal. Yea that, and maybe it will snow tomorrow...

Almost Time!

As summer draws to a close and the start of school is right around the corner, here's a video that embodies what I hope my children will experience in school this year.

Special Exposure Wednesday

I discovered this antique wheelchair in our local "Restore" which is run by Habitat for Humanity. It seems so beautiful and fashionable, almost as if the owner was celebrating its use...

From One Second to the Next

"From One Second to the Next," the film below, came together when AT&T approached the legendary German filmmaker Werner Herzog and asked if he would direct a series of short films warning people about the dangers of texting while driving.

"What AT&T proposed immediately clicked and connected inside of me," Herzog told the AP. "There's a completely new culture out there. I'm not a participant of texting and driving—or texting at all—but I see there's something going on in civilization which is coming with great vehemence at us."

The result is haunting. It focuses on four accidents, some of them fatal, and Herzog aims his camera squarely at the faces of both victims and perpetrators, asking them to describe in detail what happened and the aftermath. Herzog emphasizes the change in civilization he perceives in part by examining an accident in which an Amish family was killed and another in which a horse-shoer's truck was involved.

It's long, about 35 minutes, but I believe well worth your time.

Goodbye ESY

Summer school/ESY services came to an end this past Friday, and I must admit that I am very glad.

For the past 5 or so years, ESY for Ashley has meant going to a central school location with a lot of other students with a myriad of disabilities.  From the beginning, I questioned just how much of the "I" in "IEP" was addressed during the summer, but since Ashley seemed to be having a good time - at least the first year or so - I went along with it.  But the past couple of years have not gone well.

I never know who her teacher is, who her aide is, who her interpreter is.  I have no idea if any of those people have any working knowledge of deafblindness.  The only status reports I receive say "Ashley had a good day."  Twice she brought home a cupcake from school - homemade, and I won't even go into the reasons why I threw those away rather than letting her eat them.  Apparently the class took a couple of trips into the community because I was asked twice to send money for a 'shopping trip."

But the biggest reason I am done with centralized ESY/Summer School services is that Ashley gets hurt- a lot - and no one can explain how it happens.  Last year, it was a serious abrasion and many bruises.  This year, she has come home almost every day with a new bruise.  When I asked the teacher (via note because I didn't have any other way to contact him/her), I was told they had no idea, that Ashley had two people with her at all times (aide and interpreter) and neither had seen anything.

So, in support of Ashley's health and safety, she will no longer be participating in this particular model of ESY services.  I strongly believe that she needs ESY services.  Heck, I went to due process and won over ESY services.  But the way it is currently structured just isn't working.

I'm not going to worry about it right now since it's over for this year, but next year, the IEP team will need to engage in some serious discussions on the subject.

If A Tree Falls....

I'm not one to dwell on the things that my children with disabilities can't do. Rather, I focus on and share constantly with others all the things they can do. But every so often, I go to that place that makes me wonder - do my children themselves see their disabilities as a negative force in their lives? The subject I visited last night as I drifted off to sleep was the land of sounds.

My two Deaf children will never hear the sounds that evoke such strong feelings and memories in my life - a train whistle, waves crashing on the beach, wind blowing in the trees just before a summer storm, a tea kettle whistling, a bird's song, or the sound of cicadas calling for their mates, for example. It seems so much of my past life and memories are wrapped around sound as well as all my other senses. Ronnie can't include sounds in his memories, and Ashley is unable to include sounds or sights in hers. Do they feel they are missing something? Does it make them sad? Or, are their memories molded by other things, things that are equally as strong as mine which do include sight and sound?

There are some wonderful and necessary accommodations that can be made for the Deaf and Blind - doorbells that flash lights, alarm clocks that shake beds, bumps on paper to make words. But how does one accommodate for the sound of a waterfall or the vision of a V-shaped flock of geese in the sky? There is, of course, sign language to explain sounds - a barking dog or a police siren, for example. But what to these signs mean to a Deaf person? If I sign 'dog bark loud', does Ashley understand what loud is?

The questions in this post are mostly rhetorical, and just musings of my sleepy mind. But I wonder, do my children feel they are missing something in their lives because they can't see or hear, or are their lives equally rich and built upon their own realities of ability....????

Special Exposure Wednesday

My old house got a little bit of an upgrade yesterday.  When houses were built 55 years ago, most of the electrical outlets were installed as non-grounded, two pronged outlets.  I don't quite understand why since in most of my two prong outlets there was a ground wire already present.  A lot of my outlets had stopped working, and worry about fire was always on my mind.

So yesterday, I had all the outlets switched to grounded three prong outlets.  And since the electrician was already at the house, I had him fix a few other things - an outdoor light that had stopped working, and some fluorescent lights in my family room.  Things got so much brighter!  Ashley loved it and couldn't stop signing "light", but all I could think of was how I was going to have to clean a little better.  The dust became much more visible with the new lighting!

August Has Got To Be Better

I'm glad that I had a wonderful week-long vacation at the end of June this summer because July was possbily my worst on record.

First, just as my vacation was ending, shingles was taking hold of my left side, from my spine and wrapping around my side to the front. First came the numbness, then pain, then blisters, then more incredible pain, and there was a little flu-like illness thrown in for good measure. My doctor prescribed an anti-viral medication that was supposed to make the symptoms not be quite as bad, and some prednisone for the pain. If what I got was not as bad, I would have hated to see what things would have been like without those two medications. It's now been a little over 5 weeks and the blisters are gone but the numbness remains and the pain rears it head just every so often. All in all, things with it are not too bad today.

But, let's step back two weeks. So halfway through July, I eat some tainted food and end up with shigellosis. That's a disease that is food-borne and wreaks havoc on your digestive system. It's been two weeks now, and still in the morning I have to take an anti-nausea pill. I've lost 8 pounds, and I still have difficulty watching food commercials on TV. But....I think the shigellosis is also on its way out. I am at work today after 9 days out, the last 9 days of my sick leave for this year.

So, here's hoping August is better! I don't wish on my worst enemies either of the two illnesses I experienced.

Jenny GOT Justice!

This picture says it all!

Check out this video link where Jenny's incredible attorney speaks and Jenny expresses her absolute gratitude and excitement!  And then this statement from the ACLU on Jenny's win.

This win is about a person, every person, being able to have choices in their life - a win which reaffirms the right of every person, regardless of their level of ability, to live a full and rich life.  This win makes a difference for Jenny as well as all the Jennys who come after her.  This win makes a difference for my children and yours!

Congratulations to Jenny, her new guardians, and to her incredible, special attorney, Jonathan Martinis of Quality Trust for Individuals with Disabilities.