Dan the Man

Once upon a time, a man named Dan Wilkins started designing t-shirts, bumper stickers, and such. He also started writing and sharing his very enlightened views about our disability culture. I have bought many of his shirts over the years, and even had him design some special shirts. Today I thought I would share some of his work with you. I encourage everyone to consider ordering from his website (http://www.thenthdegree.com/). If nothing else, the looks you get while wearing his shirts will be priceless!!

Thankful Thursday

This Thursday, I am very thankful for:

• A summer without brain surgery


• Big golf umbrellas even though I am not a golfer


• Summer sandwiches with a thick slice of a tomato straight from my garden


• Knowing my friend Sharon has found her prince after enduring many frogs


• Thunderstorms, and my home generator


• My very cool, air-conditioned office


• Being able to paint the walls in my house any color I want


• Sleeping three hours straight last night


• Having a reserved parking space less than a block from my office


• The fact that my family sits down to dinner together EVERY night

Listen To Me

Being able to communicate is, in my opinion, a basic human function. Everyone needs to be able to let others know if they need help, if they are in pain, if something frightens them, if they want or don’t want something, if they want company or if they just want to be left alone. But communication should go further than just basic needs and desires. Sharing a conversation, sharing joy and sorrow, having a sounding board for a problem, or just having the ability to complain are important avenues for interaction with others.

Even though Ashley’s doctors told me when I adopted her that she would never be able to talk or communicate, they were so wrong. Even though her teachers and other school staff told me she would never be able to understand and use sign language, they too were so wrong. With very intensive supports and therapies, and with loving and committed caregivers, Ashley has turned into quite a communicator. But I saw some folks yesterday who had not been given the supports that Ashley has, and as a result I never witnessed any interaction in the three hour time period I was around these folks.

Ashley, Corey, Chip, Amy and I went to a baseball game yesterday. Ashley was in her wheel chair because the steps are a bit too steep for her, and because we wanted the ‘good’ seats that are reserved for people with disabilities. Parked beside Ashley were five adults in their wheelchairs, adults with very significant physical disabilities. Their chairs were pushed into position by an adult man and woman – people I believe were staff at the institution in which the folks lived. That was all the interaction there was until three hours later, and the same adult man and woman, unlocked the wheelchairs and began returning the five folks to their waiting van.

Why couldn’t the staff members speak to the adults? Why didn’t the staff ever offer a drink or food – they (the staff) made sure that they had something to drink and eat themselves. Why couldn’t there be conversation about the game or the goings-on in the stadium? Why were the folks never asked if they were too warm and wanted to be moved into the shade? Why didn’t the staff ask if they were enjoying the game?

Each of the five adults had to potential for communication, even though none of them were probably capable of speech. Four of the five had fine motor ability in at least one of their hands, and could have operated a communication board. The other person had a very definite eye gaze (easily witnessed as he watched each attractive woman walk up and down the stairs). And eye gaze can also be used with a communication board. How did these five people get to be in their 30’s, 40’s and 50’s without someone recognizing this need for communication?

These five people were, of course, communicating, but no one took the time to notice or build on the communication. They were communicating boredom, despair and dejection. When the chair of one of the older women was pulled back to leave the game, the woman squealed very loudly. She was communicating. The older man who fell asleep during the 5th inning of the game was communicating. And the 30ish year old man who ate an entire box of cookies during the game was also communicating.

When discussing the rights of people with disabilities, the right to communicate should not be overlooked. Curb cuts for wheelchairs are a great thing – sharing a smile and a sentence is even greater.

A Summer Without Brain Surgery

Ashley had an appointment with the neurosurgeon on Friday. Since finding out on Wednesday night that she had two brain tumors, everyone has been on edge – imagining what could be, what impact it would have, how we would all cope. Amy and I tried to talk about anything but the tumors, almost as if we didn’t talk about them, they would go away. While we wanted an explanation for Ashley’s increased seizures, this was not the explanation we meant.

The speed at which things moved once I was notified about the tumors only contributed to the anxiety. Never have I been able to get an appointment with a specialist in less than a month. The waiting lists for these scarce doctors are usually months long. But, I called the neurosurgeon’s office on Thursday morning, and our appointment was made for Friday morning. Neither Ashley nor I slept much Thursday night.

After fighting the construction and traffic to find a parking place at the Medical College of Virginia (MCV), Amy helped Ashley and me find the neurosurgeon’s office. Registration went smoothly and quickly, and everyone was very nice – a niceness I interpreted in my highly anxious state as pity. After a short wait in the examining room, the neurosurgeon entered, still in his surgical garb. He introduced himself and immediately went to reviewing the MRI images. He shuffled through them quickly, lingering on a few, and then stood up and said he would be back. As with everything else involved with this visit, I interpreted that to be a negative sign. I imagined him calling the operating room and telling them to start prepping for brain surgery.

He was gone quite a while, time I later found out during which he was trying to contact the neurologist, the person who had discovered the tumors. Unable to reach the neurologist, the neurosurgeon returned. He said he wasn’t sure that the tumors were the cause of Ashley’s increased seizures, and that he was reluctant to remove them with everyone thinking the seizures would cease after surgery. He said the tumors did need to be removed but that they did not appear to be cancerous – the first really positive thing I had heard since Wednesday night. I sighed deeply and began to relax just a bit. His game plan was to caucus with the neurologist and another ‘brain expert’ at MCV. He said if they could convince him the tumors were the cause of the seizures, he would recommend immediate surgery. If they could not convince him, he would prefer to wait three months, do another MRI, and then more than likely, go ahead and schedule the surgery. His lack of immediate need to remove the tumors went even further to help me relax a bit more. We all left MCV and went home feeling a tad bit better.

It was just a couple more hours until I heard again from the neurosurgeon. His caucus had happened and the consensus was that we could wait three months. So, although my concern about the tumors is still great, and although brain surgery is in the near future, we have the summer. Our family can enjoy all the vacations and summer activities we had planned, and perhaps enjoy them even more because we know what lies ahead. I’m sure my anxiety and concern will skyrocket again as September approaches, but for now, bring on the cookouts, the beach, the baseball games, and the swimming pools. As my friend Jane so wisely pointed out, “Having brain tumors is bad but having a summer without brain surgery is priceless. “

Thankful Thursday

It's difficult for me to find my thankful thoughts today because I received word from Ashley’s neurologist last night that her MRI has revealed two new brain tumors. She has had two brain tumors in the past, both benign, but both very scary. So today my list of things I am thankful for is dedicated to my beautiful daughter. I would very much appreciate everyone keeping her in their prayers.

Today I am thankful for:

• Ashley’s infectious giggle


• Her sweet voice saying ‘MOM’


• The way she curls up like a lima bean when she sleeps


• The way she invents signs when a sign for something doesn’t exist – Cheetos, for example


• The way she very gently places her hand on my cheeks to turn my face towards hers


• The joy she finds in bubbles


• Her obsession with girly clothes


• The way she signs ‘thank you’ whenever someone does something nice for her


• Her drive and persistence to learn and experience new things


• Hearing her say “I luh” (I love you) to all the special people in her life

I love you, my dear Ashley.

In nomine Patris et fillii et Spiritus Sancti

I’ve been trying for 10 years to find a church that would welcome my family. I know it sounds odd that I haven’t had any luck in those 10 years, but it’s true. It sounds really odd to me also.

I was raised in the Catholic Church. Friday night brought fish for dinner, and Sunday mornings meant church. As my teenage years approached, the Catholic Church approved conducting mass on Saturday nights, and my parents switched to that so we could sleep in on Sundays. While I probably grumbled about having to attend mass, I know I found a comfort in it – a realization that there were forces greater than myself, forces I could turn to in times of distress. That comfort has accompanied me through the many tribulations of my life, and is a peace that I continually still turn towards. Sadness overwhelms me, however, that I have not brought my children to that same peace and comfort.

I’ve visited Catholic churches, Baptist churches, Presbyterian churches, non-denominational churches, and several others without labels. The visits have played out the same regardless of the doctrine of the church. We arrive as a family – two children in wheelchairs, two walking. Jessica is friendly and outgoing but doesn’t understand that exuberance does not always have a place in a house of worship. Corey drums his ADHD-inspired head beat on the backs of pews or benches, bringing looks from the other church-goers of “Can’t you control that child?” Ashley is just Ashley – loudly vocal, fidgeting on the scale of Paul Bunyan, and with an overwhelming curiosity that leads her to touch, taste, and otherwise examine every surface around her. I can usually count on about 5 minutes before one of the “proper” church-goers turns to me and suggests I take the children to the nursery. But, there’s a problem with that also.

Nurseries are for babies and very young children. My children are teenagers. While Jessica would be very happy to interact with 4 year olds, my attempts to instruct her in ways appropriate to her age would be undermined. Put Ashley in a room with toddlers, and in no time one of the young children would be hurt because Ashley is the size of an adult and is blind. She can’t see the small children standing in front of her as she mows them down. And like Jessica, Ashley needs to be with her peers.

The next suggestion I usually hear is Sunday school. Oh, how I would love for all my children to attend Sunday school. But until I find a church where someone can both communicate in sign language with Ashley and assist her with orientation and mobility, not to mention helping both her and Jessica with activities of daily living (eating, toileting, etc), Sunday school is not really an option.

So there’s the rub – my children are not wanted in the church during service – they are not wanted or cannnot be accommodated outside the service – and I can’t leave some of them home and take the others. I refuse to believe however that a church that can accommodate us as a family doesn’t exist. I am, though, very tired of looking. My children have experienced enough rejection in their lives and should not have to experience it in a church of so-called Christian people. While I would really like to hear from other parents like me who have solved this problem, for the time being we will be worshipping in solitude. And, I hope I can provide enough of an example for all my children that they, too, will find the comfort that I have found in God.

The Other Story from a "Pillow Angel"

I have written twice before about a young girl named Ashley from Seattle (A Tale of Two Ashleys, A Tale of Two Ashley's - Continued). I didn't think I could be outraged any further than I had after reading about Seattle Ashley and the brutality she experienced at her parents' hands. But, my outrage has grown even deeper after reading this article from the Seattle Post Intelligencer written June 15, 2007 by another 'pillow angel'. (Please pay special attention to the fact that I said "WRITTEN" by another pillow angel)

In my January 13, 2007 blog post, I said I would gladly take Seattle Ashley into my home and raise her to be the woman she is meant to be. I stand by that offer, especially after reading the above referenced article. The following profound quote from the author says it all...

No child should be presumed to be profoundly retarded because she can't talk. All children who can't talk should be given access to communication therapy before any judgments are made about their intelligence.

Could we get that statement tattooed on the forehead of every educator in the United States?