Their Lifelines

I try to limit the number of posts I write on political issues. Politics divides people, and I don't want to perpetuate that divisiveness. But, August 2nd is just days away and our politicians can't seem to play nice. As a result, I am scared to death.

There are many things on the chopping block, but the two things of primary interest to me are Social Security and Medicaid. Those two programs are the lifelines for my children. Jessica's SSDI is her only income, and it is already too low to actually live on. Ashley, Jessica and Ronnie rely on Medicaid for their health insurance. They need the medicine that Medicaid pays for to continue to live. They need the surgeries, the interventions, the assistance. None of those things are a nicety or an extra - it is their life. Just one of Ashley's seizure meds costs $450 a week! If she misses one dose, a lifethreatening seizure is a real possibility.

So please, Politicians, get your acts together, but don't do it on the backs of our country's most vulnerable. I'll gladly pay increased taxes if you leave my children's benefits intact.

My Mighty Sprite

It’s so amazing to watch Ashley do things that doctor said she would never do – that others said her disability would prevent her from doing. This past week was a perfect example.

We scheduled a trip to the beach. The particular beach we visited was about a two hour drive from our home. Along the way we planned to stop at a museum, and we had plans during the week for boat trips, playing on the beach, seeing a movie, staying in an hotel, and of course, eating all our meals out in restaurants.

Imagine being deafblind and doing all those things. New smells, new textures, schedules thrown out the window, and a lot of people around that you don’t know. All my training in deafblindness said to go slow, introduce new things carefully and slowly, and try to understand the hesitation the person with deafblindness might exhibit. Well, that was all a bunch of hooey as it pertained to Ashley.

Rather than hesitating, she often led the way. If we stayed too long in the hotel room, she was asking to go – go anywhere – just go. She tried several new kinds of food, including fried pickles (yuck!). She slept very well in a strange bed. She loved all the sightseeing trips, and adored the boat trips. She was extremely happy the whole time, and just adapted to whatever we were doing. It was almost as if she had no disabilities.

I’m not sure what intrinsic quality Ashley possesses that leads her unafraid into new situations, but I wish I could bottle it. She is such a delightful person, and I just know she would love to get in the car and spend the next year exploring the United States! If I could retire, we might just do that.

When people observe her, they often don’t believe she is deafblind. I can assure you that she really is, but her fearlessness and zest for life almost always overpower that disability. She lives life to the fullest, and I am so very proud of her!

Special Exposure Wednesday

My break from the demands of life was wonderful! The kids and I went to the beach and had a great time. One of the places we visited was the Virginia Living Museum. We saw a great collection of Virginia sea life and depictions of the many different environments to be found around Virginia. This little guy, a skate, swam right up to the edge of his tank to greet everyone who passed by!

Gone Fishin'

Well, not really, but I do need a little break. I'm taking a few days off from posting - from thinking - from working - from not napping - from schedules - from living life on a time clock.

It's summer, and summer means a slower pace, right? Mine is anything but that. But for the next few days, it will be slower. I hope Ashley will let me sleep just 15 minutes longer. I may take a bubble bath after she goes to bed at night. I will savor a dinner, not just inhale it. I will listen to the birds, and dead head my flowers. I will scratch mosquito bites and wear flip flops until bedtime. Heck, I might even have a wine cooler or one of my mother's drinks of choice, a Tom Collins. (I have no idea what a Tom Collins is but it sounds like summer, don't you think?).

So enjoy your weekends, everyone. Stay cool and I will see you all again very soon.

How Cool Is This!

NASA has unveiled a new book for blind and visually impaired readers.



The book “Getting a Feel for Lunar Craters” was created with the NLSI and features tactile diagrams of the lunar surface designed to educate the blind and visually impaired about the wonders of Earth’s moon. David Hurd, a space science professor at Edinboro University of Pennsylvania, Edinboro, Pa., is the book’s author. He and tactile engineer John Matelock began creating tactile astronomy tools after a student with a visual impairment signed up for Hurd’s introductory astronomy course. Cassandra Runyon, a professor at College of Charleston, Charleston, S.C. and Hurd previously produced “A Tactile Guide to the Solar System with Digital Talking Book” for NASA.

Although books from the first printing have run out, a second printing is expected in about 2 months. You can bet Ashley's name will be on the second printing list!

Here's the website about the book.

Special Exposure Wednesday

Maybe it was my Southern upbringing but before I ever had a house of my own, I always dreamed of one with both a pyracantha bush and a magnolia tree. I am very blessed to have found just such a home! Here is a picture Chip took of one of our magnolia blossoms:

One

I may be way out in left field with this post, but it sometimes seems to me that some parents of children with disabilities seem jealous that their child is not ‘as disabled’ as their friend’s child.

There grows in communities groups of parents who have children with disabilities. These groups may grow out of shared hospital experiences or shared school experiences or maybe just through word of mouth from one family to another. And the adults in the groups come together for support and to share their stories that usually only others in similar situations will understand. More often than not, the children represented by these groups have very similar disabilities – parents of children with deafblindness, parents of children with Down Syndrome, or parents of children with trachs, for example. But what if you are the parent of a child that just doesn’t quite fit the same description of other children in one of the groups? What do you do and where do you find your support?

What I have seen several times is that the parent might slightly exaggerate their child’s disability. Or, the parent will accumulate the trappings (high tech wheelchairs, special vans, etc) that might admit them to their group of choice. They will pattern their daily experiences (“Mary was up four times last night, and I am so exhausted today”), after the others in the group to which they wish to belong. They will adjust their lives to place more focus on their child and that child’s disability if doing so will admit them to the group.

Here’s an example without using real names, of course:

Sue is a young 30-something parent of a little girl with CP. On one of her visits to the hospital, she met another parent, a parent of a child whose survival depends on a trach, tube feeding, and constant suctioning. That other parent talked about her friends, other parents who shared a similar life and who got together regularly for birthday parties, lunches, and other such outings. Sue, feeling a little isolated in her life, exaggerated the level of her daughter’s issues just a bit to wrangle an invitation to the next group meeting. And from there, the exaggerations continued, but she was admitted to the group.

It saddens me that parents might feel a need to do this. It saddens me that we parents of children with disabilities isolate ourselves with others in similar situations just to find the support we need. We talk about inclusion all the time, and all the while, we often unknowingly are excluding.

I know it’s difficult for true inclusion to work, and I know that there are many, many facets to inclusion. I know I may never see it fully bloom in my lifetime, but that doesn’t stop me from dreaming about it. I suggest we try to envision the inclusive world we all desire while at the same time finding the support we need. I fully realize that it is much easier to bond with another parent whose child is on a trach if my child is on a trach. But let’s try setting aside the specifics of disability and concentrate on the specifics of humanity – regardless of ability.

We may not be able to change the world as one, but if each of us makes small inroads, I have to believe that one day the world will change and be universally accepting.

A Beautiful Language

I admit that I'm a bit of a language snob. I love the English language and the way some people can spin delicious stories. But it does bother me when people fracture the English language.

I realize that writers often take many liberties with convention, and that makes for more interesting reading. But I don't believe that liberties with spoken English always turn out well.

I'm the same way with sign language.

Sign language to me is a beautiful expression of language. But as with slang in English, slang or sloppy signing bothers me. I love to watch someone sign with clarity and expression. Too often though, signers get sloppy. Ronnie is just such a signer.

When someone gets sloppy with signing, it sometimes can seem disrespectful, and it is definitely harder to follow in a conversation. Maybe that is what seems disrepectful to me...

Here is a wonderful example of someone who, in my opinion, is a beautiful signer. Clear, concise signs full of meaning, this person is a joy to watch! I hope that I can be like her..

Top Ten Tech Gadgets

The website, enabled.in, has listed what its authors feel are the top 10 tech gadgets for people with disabilities. Right at the top of the list is the IPad, not suprisingly.

Take a glance at the other gadgets on the list, and see if your favorite is there.

Top 10 Tech Gadgets for People with Disabilities

Packing My Valise

One of my favorite bloggers is Dave Hingsburger at the Rolling Around In My Head blog. He posted an entry the other day titled, “When I Pack For Heaven” and it really made me slow down and think. I've written many times in the past about things for which I am thankful, but when I think of whittling all those thankful things down to just a few that I can pack in a small valise for my trip to Heaven, things got a little tougher.

I’m really hoping that St. Peter will allow me to enter Heaven with maybe a medium sized valise considering that I have five children, and have many things to pack. But if not, here is my list of the most important things to pack. Why don’t you think about this and tell me what you would pack?

Things to Squish into my Valise for my Trip to Heaven:

• Ashley’s smile and little giggle when I pull the bed covers off her head each morning.


• The pride in Jessica’s eyes when she finally was able to wear ‘big girl’ panties all the time.


• Chip’s hand slipping into mine while we attended my mother’s funeral.


• The way Corey stood just a little taller after he was inducted into the Army.


• The vision of Ronnie shooting both fists into the air whenever he makes a basket for his wheelchair basketball team.


• The memory of the way Ashley wrapped her whole body around me right after her brain surgery at age 2.


• Jessica’s grin and the little skip in her step when she walked on stage for her 8th grade graduation.


• Seeing the abject fear in Chip’s eyes when Ashley almost lost her life to a seizure, and then watching him not want to let go of her hand once we knew she would survive.


• Having Corey list me as his mother on his Army recruitment papers when I am actually just his legal guardian. I never had official mother status for him.


• When Ronnie opened his eyes and search for me after a very serious surgery just a few months after he had joined our family.

Oh my, I think my valise is already full. Maybe I need to have a little talk with St. Peter to see if I can bring more than one!

Special Exposure Wednesday

Watching Ronnie's facial expressions during a basketball are almost as entertaining as the game itself!

Not Buying What You're Selling

So, yesterday I told you about Ashley's hand injury - the mystery injury that I got no note or phone call about. I sent an email, and here was the response I got:

I am very sorry to hear of Ashley’s injuries. Thank for contacting me and alerting me of your observations and concerns.

I have conferred with her assistant, the classroom staff as well as the bus driver and bus aide. No one, including myself, witnessed any accidents nor did we notice Ashley crying to indicate that she was in pain or distress. Neither I, nor any of the above mentioned staff, noticed any bruises on Ashley prior to her leaving our care on Thursday afternoon.

I took look at right hand today and did not notice any swelling but did notice that one of her fingers had a dark mark/bruise near the fingernail. It appears to be an old bruise and must have occurred during the injury you are alerting us of. I saw no other indications of injury anywhere else on Ashley prior to her leaving the classroom today.

Ashley is under the constant supervision of her 1:1 assistant thorough out the school day. The classroom staff, as well as myself, are also on hand to assist her as needed. Please be assured that Ashley’s safety and well-being is of utmost importance to us all and we will continue to work very hard to insure that she is safe and appropriately attended to.

Please let me know if you have additional concerns or questions.

I still have no explanation for the mystery injury, but I guess I'm supposed to feel all warm and fuzzy knowing just how safe she is while at summer school. Tell me, would you feel all warm and fuzzy after reading that email????

(Oh, and btw, Miss Summer School teacher, I think that the word should be 'ensure' not 'insure' in your last full paragraph...unless of course you are writing an insurance policy for Ashley, which given the mystery injury, might not be a bad idea.)

No Note, No Call, Nothing

Last week was the first week of ESY/Summer School services for Ashley. I'm used to getting a call from the teacher the week before school starts so we can chat about what I feel the teacher needs to know about Ashley. I know that the teacher is sent a copy of Ashley's IEP, but that doesn't really define who Ashley is. This year, I got no call. So, the first day of school I sent in a document that listed what I felt were important points for the teacher to know and understand.

I expected to get something back that first day - maybe a note from the teacher introducing herself, maybe a list of supplies the teacher would like help with. But I got nothing. In fact, I got nothing until the last day of school last week, and that was a quickly handwritten note from the teacher asking for spoons and wipes, and of course, the same medical form that I am asked to fill out every single school year and ESY session.

But something else of significance happened that last day of school last week. Ashley came home with three fingers on her right hand very swollen and black and blue. No mention of that was included in the note from the teacher. (The picture above was taken just as Ashley got home from school. The swelling and bruising got much, much worse as the night went on...)

I know whatever happened didn't happen on the school bus that day. The summer school bus driver and aide are wonderful beyond belief. The would have mentioned anything that might have happened to Ashley. So, it had to happen during the school day.

And just to add to my concern, Ashley has a fulltime aide with her at summer school. No note from that person either???

The injury was pretty significant. I'm sure Ashley would have cried when it happened. It looked like she had shut her hand in a door or something similar. It was so tender to the touch that it was difficult for me to get a good look at it. And no one at school felt it was important to mention this to me?

I took pictures and sent an email to the teacher asking for an explanation. I haven't heard back from her yet, but expect to today. If I don't, I will make a personal visit tomorrow.

All this - no call from the teacher, the injury, little to no communication - does not bode well for this summer's ESY services...

Foodie Friday

Want a special meal this weekend? My personal chef, who just happens to be my brilliant son Chip, recommends the following:



You can find the recipe here.

Special Exposure Wednesday - On Thursday

Yep, I've gotten my days all confused this week since I had Monday off for the Fourth of July. All day Wednesday I was thinking it was Tuesday. Hence, the reason Special Exposure is a day late.

Now, a little explanation about this picture. I tend to overthink things and make them more complicated than need be. I have wanted some sort of umbrella for Ashley's and Ronnie's wheelchairs. I've looked at golf stores and online, and everything I found was either too expensive or just wasn't quite right.

Then my brilliant son, Chip, who doesn't overthink things, suggested we get some PVC pipe, some spray paint, and a couple of clamps. Voila! an umbrella holder that didn't cost much at all but is quite effective. We used it during today's downpour and both Ashley and Ronnie stayed nice and dry!

Teacher

Chip is a business major (information systems) in college, and is doing very, very well at that. He is also a burgeoning photographer and is doing very, very well at that. He also loves to cook gourmet meals, and again, he is doing very, very well at that. But there is also something else that he is doing well with, and that is being a teacher for Ronnie this summer.

Chip has taught Ronnie to do his own laundry – from start to finish. When adaptations or modifications were needed for Ronnie to accomplish that, Chip figured it out and implemented them.

He is teaching Ronnie how to cook. So far Ronnie has made peanut butter fudge and the best baked beans ever.

He is teaching Ronnie how to clean up the kitchen. Ronnie loads dishes into the dishwasher, adds the soap, and know how to start it.

He is teaching Ronnie about money – about the exchange of money for goods and services, and how to make sure the right change is received. Chip’s next plan is to teach Ronnie how to save some of the money he earns as his allowance.

Chip has taught Ronnie how to clean his room and make his bed each morning. He has taught him how much easier it is to move around the room when the floor isn’t littered with objects, and how much easier it is to find things when they are put in their proper place.

In short, Chip is teaching Ronnie the skills he will need to live independently as an adult.

I know Chip likes information systems and photography and cooking, but I do have to wonder if he is missing his calling as a teacher and mentor for people with disabilities!

How To Make It Work?

Here I am again asking for advice. There is one extra caveat this time though. I apologize in advance if I do not use the politically correct words, and I promise not to judge you if you don’t judge me.

When Ashley was younger, she exhibited many behaviors that were similar to the behaviors of children with Autism. That’s not unusual in a child with deafblindness. I even had one doctor who wanted to give her that diagnosis, but it just never seemed appropriate to me.

As her communication skills improved, the behaviors diminished. And, I believe, with maturity even more have diminished. In addition to that, my parenting style includes a heavy emphasis on socially appropriate behavior. That may come from my Southern upbringing…

The past weekend a friend of mine and her family joined us for dinner. One of her children is diagnosed with Autism and exhibits many of the same behaviors I saw in Ashley when she was younger. The problem came when that child with many behaviors which were pretty extreme was around Ashley.

Ashley came as close to a meltdown as I have seen in many, many years. Perhaps it was too much stimulation – perhaps it was the stress endured by both the child and those around him – perhaps the noise and the crowd was just too much for Ashley – but she had a very difficult time, and was on the verge of reverting to some of the same behaviors.

So here’s where I need the advice. This friend is one of my best friends. I want to enjoy the company of her family and I hope she wants the same of my family. But how do we reconcile her child’s needs with Ashley’s needs? What can we both do to support our children during difficult times, and encourage socialization that is positive?

I want Ashley to understand that people are unique and should be valued for that uniqueness, but I also want her to be comfortable.

Suggestions???

Happy Fourth!

I hope you all have a safe and happy Fourth of July!

Rules? What Rules?

Ashley loves basketball but hates rules.

Last night, we attended the opening of a new basketball complex, one which includes a league for wheelchair basketball. Now Ronnie’s team will be able to play during the summer as well as during regular basketball season.

Both Ronnie and Ashley were in their chairs when we arrived for the opening ceremony, and most others in attendance assumed both of them would be playing the inaugural game. Unfortunately, it would not have been much of a game had Ashley played.

Ashley’s version of basketball is “gimme the ball”, “no you can’t have it back”, “it’s mine and I just want to sit here and hold it”, and “ok, now I’m ready to throw it but only up in the air so I can catch it again.”

I’m sure in her mind she would be saying, “You want me to roll up and down this court and get all hot and sweaty? No thank you.” Or, “Sorry, I can’t put on that yellow and blue jersey. It does NOT match my cute pink shorts.”

So for now, Ashley and I will be spectators, cheering on Ronnie and his team while we fan ourselves and drink iced beverages. Trust me, it really is safer that way – at least for the other wheelchair athletes!