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?

Eeeyore Has Left The Building

My 14 year old son is an Eeeyore. He is gloomy, slow-talking, and moves at a snail’s pace. He is a glass half empty person and sees the bad in any situation. It’s difficult to convince him that there might be good. I’m sure this life approach comes from his early years, and I wonder if anything can change his views. Will it be possible for him to ever accept that his life can have a positive outcome, or will he be forever chained to the misery of his past? With each passing day I am becoming more convinced, against all my hopes and dreams for him, that his persona, his psyche is now fixed. The problem with all this comes in his interaction with the rest of the family.

Corey left today to spend a week with his grandparents. I don’t think they really wanted him to visit, but my pleas for a break from parenting this difficult child must have worked. The grandparents’ lives got infinitely better the day they convinced me to take this child into my home. Although I feel they misrepresented both him and their position, the die is now cast and I refuse to disrupt Corey’s life anymore. Although he has openly shared how much he doesn’t like living with us, we are at the moment his only chance. His grandparents have told him he cannot come live with them. His aunt and uncle, who coincidentally live only 5 miles from us, refuse to let him live with them, and even refuse visits more than once or twice a year. It’s no wonder this child is an Eeeyore. Even though I understand all this, Eeeyores bring me down, and down is not where I need to be.

I have a lot of challenges in my life, and I do not in any way intend that statement to be negative. But, to be able to face those challenges, I need an upbeat energy, a positive outlook, and a belief that the challenges can be successfully met. My Eeeyore makes that difficult. He’s only been gone on his visit for about 8 hours now and I feel a lightness, a lifting of a burden from my shoulders. I believe my other kids feel it also. Everyone seemed happier this afternoon. There was joking and smiling – no eye rolling or deep sighs of frustration. There was agreement on family activities and planning on what was going to happen the rest of the week while Corey was gone. It’s sad that we feel this way, but for this week, we are going to enjoy this lightness.

I won’t ever give up on helping Corey find lightness himself. I want him to experience the joy of living and not dreading every day. I want him to believe in himself and to trust in others. I don’t want him to forget his past, but I don’t want it to shape his future either. I really hope one day my Eeeyore will leave his gloomy donkey ways behind and become a Tigger, bouncing happily through life.

The Path From Hell is Paved with MRI Images

As I shared back in May, Ashley has had some not-so-positive experiences with one of our local hospitals. However, yesterday at that same hospital that in the past has seemed like the burning pit of hell, things went well, very well. And, the same way I felt compelled to share the negative, I now feel compelled to share the positive.

Ashley was scheduled for an MRI under anesthesia yesterday. She has been having many seizures each day, and the docs have not been able to figure out why. Up until the last six months, her seizures were completely controlled by medication. Not so anymore. Instead of one medication that had been working, she is now on three medications which are not working. The seizures have been coming at the rate of 3-5 a day, some small and some not-so-small, but all very, very scary to her and everyone around her. Since she has had two brain tumors in the past, the neurologist decided an MRI was in order to check on the current state of affairs in her brain.

Wednesday afternoon, the day before the MRI, I received a phone call from the hospital letting me know we should arrive at 11am. Immediately the hair on my arms stood on end and I readied for another battle. Ashley has been so traumatized by problems at this hospital in the past, that all we need to do is pull into the parking lot and her anxiety level skyrockets. Combine that with telling her she can’t eat or drink anything from midnight the night before until early afternoon, and everyone may as well go ahead and don their attack dog training suits. I tried to remain calm with the voice on the other end of the phone and sweetly explain why we needed to be the first MRI scheduled for the day. Miraculously, the hospital staff person listened. I was still on edge though, waiting for the declaration that she was just joking, but it didn’t come. Ashley would be the first person to receive the MRI that day. Things began to look up even more when the nurse on duty said that the anesthesiologist would probably agree to give Ashley something to calm her as soon as we arrived at the hospital.

Thursday morning arrived along with reinforcements. Dear Amy would accompany Ashley and me to the hospital. It was still very early in the morning, and the lack of breakfast hadn’t quite registered with Ashley, but the pronouncement of a car ride with dancing to the bass-heavy radio music brought a smile to her face. I just hoped it wouldn’t be the last smile we saw that day.

More pleasant surprises awaited us at the MRI registration area. The staff was cordial – the area was not packed with people – kid’s books were in the magazine racks – and best of all, a TV was available that could be turned to Ashley’s favorite Nick Toon (SpongeBob). True to their word, a nurse soon arrived with some magic medicine to help Ashley relax. I was almost relaxing myself…

When it was time for Ashley to go back to the MRI room, I knew I wouldn’t be able to accompany her. I have a metal prosthesis in my left ear, and having the left side of my head stuck to the huge MRI machine was not how I wanted to spend the rest of my day. It was time for Super Amy to the rescue!! Someone had to go with Ashley until she was asleep because none of the hospital staff knew sign language. So Super Amy assumed her rightful place next to Ashley, signed everything that was going on, and even modeled the pink gas mask before trying to get Ashley to put it on. Although it was extremely difficult for Amy to watch Ashley’s eyes roll to the back of her head, she held Ashley’s hand until she knew Ashley was asleep, offering the much-needed comfort that eased the entire procedure.

Ashley made it through the MRI and into recovery in about an hour and a half. Although waking up was slower than usual because of the first magic medicine she received, as soon as Amy and I could get her from the stretcher to her wheelchair, we blew the joint and headed home. And although getting Ashley into the house on her wobbly spaghetti legs made me envision having to call the rescue squad to help us into the house, Amy, my son Chip and I were eventually able to do it. (Know anyone who builds ramps??).

Ashley was groggy for several more hours, but by mid-afternoon, walked out of her bedroom and signed EAT, EAT, EAT. We knew then that our Ashley was back!

I didn’t have one complaint about how things went at the hospital. Everyone was professional and caring and went out of their way to accommodate Ashley. This was a hospital experience like I believed it should always be. Now if we could just get the emergency room staff to take a few lessons from the MRI unit….