Thursday, May 31, 2007

Thankful Thursdays

I've decided to take time every Thursday to list 10 things for which I am thankful.

Today, I am thankful for:

  • Teachers and doctors who ask my opinion.

  • Ashley’s soft smile when I wake her up in the morning.

  • Ben and Jerry’s Chubby Hubby ice cream

  • An old and dear friend who came back into my life after 25 years, even though the stay was short

  • My teenage sons taking their baseball caps off when they walk into a building

  • Shrimp

  • Every day that Ashley doesn’t have a seizure

  • People who look at Ashley while talking to her, even though I am interpreting through sign language what is being said

  • Summer vacations at the Outer Banks of North Carolina

  • Air conditioning

Wednesday, May 30, 2007

Set Adrift

I have spoken with two Moms in ten days who are truly and completely at a loss as to what to do with their daughters. Both these Moms have multiple children and have a great deal of experience raising children with significant disabilities. They know the ‘systems’ that are in place to supposedly help their troubled children. They both have a wide support base in place, and they know where to go to find answers – most of the time. Yet both these Moms are now facing what I consider to be the singular most difficult decision in their lives – whether or not to ‘give up’ on their child with significant disabilities.

I’ve been where both these Moms currently are. I was forced to make a decision that most probably will have life-long effects on my daughter, myself, and my other children. Some of those effects may be positive and undoubtedly some will be negative. Yet, I was forced into my decision exactly the same way the two Moms are being forced into theirs – at the hands of people who should be helping to find more palatable options.

I adopted my daughter, Jessica, when she was nine years old. She had languished in the foster care system and had been physically, sexually, and emotionally abused along the way. Her way of coping with that abuse was to refuse to let herself trust or love anyone – ever. Once she joined my family, a family where love flourishes, she didn’t know how to live her life. On the surface, it appeared as if her struggles could finally be over, but deep down, she could never accept that. She had spent too many years accepting struggle as the only way of life. Her decisions then, and which continue now, were to reject our family before she believed we would reject her. Therapy, which would seem to be a logical step in helping Jessica learn that not all people in the world were like her foster families, was unsuccessful because of her moderate mental retardation. Traditional talk therapy won’t work when the ‘talkee’ doesn’t comprehend the ‘talker’. So Jessica’s options narrowed down to behavior modification (another technique that is made more difficult with mental retardation) or chemical control (medication). And like the Moms I mentioned above, I tried and tried to find the help that Jessica would need to believe that I loved her and wanted her to be happy. Unfortunately, I couldn’t.

Jessica had learned to protect herself, both physically and emotionally, in those early years, by becoming physically aggressive. She would make sure that no one ever tried to love her and leave her by making life so dangerous that the safety of everyone around her was compromised. After Jessica had been with me for four years, and after she had broken or destroyed most everything in her surroundings including two of my ribs, I had to make the most difficult decision of my life – I had to remove her from my home. Once again, Jessica had proven herself right – yet another family had rejected her. I was, however, fortunate, to find a solution that while not perfect was indeed better than some families can find.

Four years after becoming my daughter, Jessica moved to a group home for children with significant behavior issues. The fortunate part of all this is that the group home is only three miles from our family home. That means we can still play a very active role in Jessica’s life, but she doesn’t have to endure the closeness and intimacy that comes from living day to day with a family. She has adjusted quite well to the group home in part because there is a lot of coming and going of other residents and staff. She is not required to form strong bonds of attachments. She knows up front that all relationships are temporary, and unfortunately this fact is okay with Jessica. She has flourished in this group home. She is doing well in school and is well-liked by everyone whose path she crosses. She is allowed to be exactly what she is comfortable being – an island unto herself but an island with frequent ferry service to and from her family. I would like to think that one day she will finally accept our love and want to come home to us, but with each passing year the chances of that happening become fewer. But, she is safe and happy and the rest of the family is no longer being physically attacked. She is, in many ways, closer to us now than she has ever been. But, as I said earlier, we are very fortunate. Most families are not as lucky, especially the two Moms.

Mom1 has an adopted child very similar to Jessica, but this child’s aggressive behavior never ceases – no matter what environment she is in. She has been moved from school to school, inpatient treatment center to outpatient treatment center, residential treatment to therapeutic center – but the aggressive behaviors only escalate. Mom1 is no longer able to even have her daughter visit the family for fear of major injury to the rest of the family. And now, Mom1’s options appear to have run out. No more facilities seem to exist. Support organizations are scratching their heads and coming up with no more options. Mom1 is having to seriously consider relinquishing her daughter back into the foster care system. Her daughter is currently in limbo and will soon be ‘lost’ – the cycle of abandonment will go on. Mom1 knows this but seems to have no other options.

Mom2’s daughter is her birth daughter. This daughter was born severely disabled, including deafblindness. As I have talked about before in this blog, deafblindness is a very low-incidence disability. That means most people don’t understand or even know what types of supports to offer such a person. Unfortunately, most support organizations take, what is in my opinion, the easy way out. They try what they know works for people with other disabilities, and if that doesn’t work, they give up. The ‘system’ has given up on Mom2’s daughter. After moving her from school to school, residential ‘school’ to psychiatric ward, the ‘system’ has declared her a total loss. Rather than take any blame for not having educated this child for the past 15 years, they put the blame on the child and say there is no hope. The child is so frustrated at living in a dark, soundless world and not having anyone help show her a way out that she is hurting herself over and over, worse and worse. Her most recent facility has said they will no longer serve her as of June 14th, and that she will have to come home – home to a single mother raising other children in her family – home to continue to hurt herself to the point of needing emergency treatment. And no one, no organization is working to find a solution to this.

All three daughters were given up on by a system of so-called support. Three families are hurting and grieving because creativity has lost out to bureaucracy. Marriages end and people, including other children, are injured and money is given as one of the excuses. I’ve been hearing for years about the Lost Boys of the Sudan. The Lost Boys of Sudan, were a group of young orphaned refugees forced from their villages by war to trek hundreds of miles through African wilderness. Thousands died along the way — they drowned, were eaten by wild animals, shot by military forces or overcome by hunger, dehydration or fatigue. Thousands of others survived to tell the story. It is a story about the courage of these young refugees and the kindness of those who have helped them.

What about the lost children of America – the children we sacrifice because we can’t take the time to figure out how to help? America did not give up on the Lost Boys, and I find it appalling that this country is giving up on its own lost children.

Tuesday, May 29, 2007

A Tale of Two Ashleys (continued)

Back in January, I wrote about a young girl named Ashley whose parents had surgically altered her in an effort to keep her small. Many, many of us in the disability community were and still are outraged that such brutality was allowed to take place. The following at least offers some comfort...


David Carlson, Assoc. Dir. of Legal Advocacy
(206) 324-1521

Jennifer Seymour, Media Relations Manager, Children’s Hospital
(206) 987-5207

WPAS Finds Hospital That Performed “Ashley Treatment” Violated Law by Not Having Court Order

Hospital Takes Full Responsibility and Implements New Safeguards

Seattle, WASH. – An investigative report released today by the Washington Protection and Advocacy System* about the much-publicized “Ashley Treatment” finds that Children’s Hospital and Regional Medical Center, as a result of a communication breakdown, violated Washington state law in performing the hysterectomy portion of the “Ashley Treatment” on a 6-year old with a developmental disability without a court order authorizing the procedure. This resulted in violation of Ashley’s constitutional and common law rights. WPAS, under its federal authority, initiated its investigation of the “Ashley Treatment” after publication of a medical journal article describing this “treatment”.

Children’s Hospital has acknowledged that Washington law requires a court order for the sterilization of a child with a developmental disability and has entered into an agreement with the Washington Protection and Advocacy System (WPAS) to take corrective action to assure that the sterilization of a child with a development disability does not happen again without a court order. Above and beyond the corrective action, Children’s Hospital is taking steps to protect the rights of their patients with developmental disabilities including appointing someone with a disability rights perspective to the Hospital’s Ethics Committee, and requiring a court order for procedures conducted for the purpose of growth attenuation including breast bud removal, hormone treatment, and other growth-limiting medical interventions when it involves a child with a developmental disability.

In 2004, Ashley’s parents sought medical treatment that would “keep [her] small” to prevent her from growing and developing sexually. The parents requested a treatment plan that included surgically removing Ashley’s uterus and breast buds, and administering high levels of hormones. In their blog, Ashley’s parents claim that this collection of procedures would help Ashley by making her smaller and lighter, and therefore more comfortable when lying down, more easily repositioned by one person and create more opportunities to be included in family outings.

After Ashley’s parents consulted with doctors at Children’s Hospital, an ethics committee was convened at the hospital to discuss whether the treatment options suggested by her parents were in Ashley’s best interests. The committee’s opinion supported the recommended treatments and also noted that a court review would be required.

Ashley’s parents sought legal counsel to advise them on the need for court approval of the hysterectomy and were advised by their attorney that no such order was needed. Although her parents had a lawyer, no independent advocate was sought or provided to Ashley to protect her rights. “Hospital medical staff and administration interpreted this guidance from the parents’ attorney as adequate,” said Dr. David Fisher, medical director at Children’s Hospital. “It is clear in retrospect that a court order should have been obtained before proceeding with the surgery.”

“We deeply regret that a court order was not obtained and that an independent third party was not sought to represent Ashley. We take full responsibility for the miscommunication between the ethics committee and the treating physicians,” said Fisher. “We have introduced new safeguards so that procedures requiring a court order will have one obtained before they begin.” “Washington law specifically prohibits the sterilization of minors with developmental disabilities without zealous advocacy on their behalf and court approval and, in this instance, it did not happen,” said Mark Stroh, Washington Protection and Advocacy System (WPAS) executive director. “That said, we are grateful to Children’s Hospital for their cooperation with our investigation and their willingness to enter into an agreement that will help protect the rights of their future patients with developmental disabilities.”

“Courts have also limited parental authority to consent to other types of medical treatment that are highly invasive and/or irreversible,” said David Carlson, Associate Director of Legal Advocacy. “The other aspects of the ‘Ashley Treatment’ – surgical breast bud removal and high-dosage hormone treatments – should be subject to the same level of court review as those required for sterilization.”

“The implementation of the “Ashley Treatment” also raises serious concerns about the continuing discrimination faced by people with disabilities – discrimination which is often based in stereotypes about their potential and value as individuals,” said Stroh.

“The news of the ‘Ashley Treatment’ shocked the disability community around the world. People concerned with the rights of individuals with disabilities still have a lot of questions about why this type of invasive and irreversible procedure would be performed on a six year-old,” said Curt Decker, National Disability Rights Network (NDRN) Executive Director. “We hope that the agreement between WPAS and Children’s Hospital will be the first step in resolving this issue and that the long term result will be an end to the use of the “Ashley Treatment”. I know the entire disability community will be carefully watching the implementation of this agreement.”

# # #

Washington Protection and Advocacy System (WPAS) is a private non-profit organization that protects the rights of people with disabilities statewide. The mission of WPAS is to advance the dignity, equality, and self-determination of people with disabilities. WPAS works to pursue justice on matters related to human and legal rights.

Monday, May 28, 2007

Take the Time to Remember

On this Memorial Day, let's all take the time to personally connect and put a face to someone who has sacrificed his/her life to keep the world free. My connection is to Katie....

Before Katie Soenksen joined the Army, she told a teacher that she was meant to enlist.

Then she instructed Sue Day:

“Don’t you dare be scared for me. Pray for me. Be happy for me. But don’t be scared for me.”

Day learned during an intercom announcement at Davenport North High School earlier this morning that her former student, the one she nicknamed “Stinky,” died in Iraq, killed by a roadside bomb that destroyed her Humvee in West Baghdad.

“She did exactly what she wanted to do,” said her mother, Mary Ann Soenksen, 24 hours after two Army officials came to her northwest Davenport home to inform her of her daughter’s death. “We raised the kids to be their own people.”

A chaplain and a captain knocked on the Soenksen home door at 6:30 p.m. Wednesday. “I knew when it’s two ... . I knew what it meant,” her mom said.

Mary Ann Soenksen opened the last e-mail she received from her daughter this morning. It was about the extension for getting her taxes done. Dad, Ron Soenksen, text-messaged back and forth nearly every day. When he is on his way to work in the afternoon, it is evening in Iraq.

Katie Soenksen, 19, and a 2005 graduate of North, came from a military family. Her grandfather was military police in World War II. Her aunt is set to become a colonel in the Air Force this summer. Two uncles are in the military, as is a niece.

Soenksen was a member of the 410th Military Police Company, based at Fort Hood, Texas. She enlisted in the Army after her graduation from high school in 2005. The Army sent her to Iraq last summer.

She is the 52nd Iowan to die in Iraq, the third woman. She is the second Iowan to die in five days in Baghdad.

Thanks to the Davenport, Iowa Quad City Times for this information.

Thursday, May 24, 2007

Am I Selfish?

Someone asked me the other day if I thought it was selfish to adopt children, children with special needs, as a single parent. Although I thought long and hard before each adoption how it would work as a single parent, the word ‘selfish’ never crossed my mind. When I first began my adoption journey, many times the children in whom I was interested would be placed in a two parent family – I wasn’t even considered as a possibility. Again, I understood that and believe that in an ideal world, a two parent family is preferable to a single parent family. But with adoption of children with special needs, an ‘ideal world’ just doesn’t exist. I have adopted as a single parent three children with special needs, and I didn’t and still don’t feel selfish for doing that.

People were not standing in line to adopt the children that are now a part of my family. Ashley was the first child I adopted, and although 85 families originally expressed interest in adopting her, as soon as they were told of her many significant special needs, they withdrew their applications. My next adoption was Jessica, my now 16 year old daughter. Like Ashley, Jessica had many families express interest in adopting her, but once they heard of her very significant mental illness, their interest evaporated. Social Services even withheld important information from me about Jessica until I had signed the adoption agreement because, as they admitted later, the options for Jessica were pretty much gone. And then finally, Corey, my now 14 year old son, joined our family. His relatives, the ones who were relinquishing custody and trying desperately to find a family for him, withheld a lot of information until agreements were in place. All three of these kids had not-so-bright futures ahead of them until they joined my single-parent family. Should I feel selfish to have given these kids a safe, loving home?

It's hard to imagine what life would have been like for Ashley, Jessica and Corey had they not joined my family. Ashley, as most doctors were recommending, would probably have been placed in a nursing home for the rest of her life, languishing in sub-standard care and never having the chance to become the vibrant, loving, happy person she is today. Jessica, who had been physically and sexually abused in many foster placements, would probably have continued down that path until her mental illness, nurtured at the hands of her so-called caregivers, spiraled totally out of control. Even in a loving home, Jessica has traveled a rough road to healing, but healing she is. Corey, who spent the first eight years of his life on the streets of Baltimore, would probably still be there and would spend his life there – that is, until the drugs and violence decided his fate. Now, he is learning that he does have some control over his future, and he is trying to set a course for success rather than abysmal failure. Should I feel selfish for being a conduit for these kids?

Perhaps my questioner was concerned that my children, especially my adopted children, had no significant male role model in their lives. I admit that has been a struggle, but I have done and continue to do whatever I can to provide them all with male role models – men who are strong and compassionate, intelligent and forgiving, loving and concerned. And, I think I have succeeded often in that effort. Should I feel guilty for having high standards for a husband, and therefore not having found the right person to walk life’s path with me and my children?

My children are caring, compassionate, and respectful. They work hard in school and help around the house more than most children their ages. They are happy and much more well-adjusted than they would have been in more negative placements. They are excited about their futures and convinced that their futures can hold promises of a good life. They have mastered skills people said they would never master. They are the first to offer to help our elderly neighbors and friends in need. They are, in short, fine people. I am proud of all them and of the obstacles they have overcome. I could be wrong, but I don’t believe they would say I was selfish for providing a better life for them.

So, to answer my questioner, no – I do not feel the least bit selfish for adopting children as a single parent. I feel very blessed that social workers believed in me and in my ability to raise these special children. If I feel selfish about anything, it’s that there is so much love in my family that many times is not present in other families – even two parent families.

Wednesday, May 23, 2007

Time for a Wild Ride on the Short Bus

I received my advance copy yesterday of a new book by Jonathan Mooney. The book is titled The Short Bus. What is the significance of all this, you ask? One whole chapter is devoted to my sweet Ashley!

This book is the reason that I am having a tough time functioning today. I stayed up all night reading it. Well, maybe not all night - I may have gotten an hour of sleep before my scheduled 4:30am alarm. I don't regret a minute of the lost sleep however. The book is MAGNIFICENT!! I laughed, I cried, and I didn't want it to end. I developed a personal connection to everybody in the book, and reaching the last page meant I had to say goodbye to them. I didn't like that. I want all those marvelous people - including Jonathan Mooney and his deliciously quirky family - in my life always.

About four years ago, Jonathan put out a call for papers from anyone who had a compelling story about the stigma of not being considered normal. I sent him a story about Ashley and an elementary school holiday program in which she was allowed to participate. I will not tell that story here because I want you to buy his book! But, I did write back in January about one of the many questions Jonathan had asked me during research for his book.

Ashley’s story, and the stories of 12 other unique individuals are included in Jonathan’s book. Jonathan bought a short bus and traveled across the United States to meet and spend time with those 13 families. His book is the story of that journey. One of the reviews that I think sums of the book the best is from Dr. Edward Hallowell, an author himself:

"Mooney's is an uplifting, rebellious voice. His book is not just about how he found personal success after growing up with severe learning disabilities, it's the story of his journey to accept himself by finding others labeled 'disabled' or 'not normal' who have survived and even triumphed. This is a remarkable, magical book. Fasten your seat belts."

The Short Bus will be officially released on May 29th, and is available for preorder now through Amazon and most other booksellers. I know I am prejudiced, but I just couldn't put it down. I recommend you all get a copy or borrow a copy soon. As Andrew Imparto, President and CEO of the American Association of People With Disabilities said, "This book should be required reading for anyone who thinks they are in the business of 'helping' or 'serving' people with disabilities."

Mr. Mooney's agent is working real hard to get The Today Show to do a segment on the book. If it happens, Jonathan has asked me to join him. It just doesn't get much better, does it - Ashley featured in a wonderful book and a chance for me to meet Matt Lauer and Meredith Vieira!!

Thursday, May 17, 2007

How Does Your Garden Grow?

As I was walking through my neighborhood last night, I wondered if I could divine anything about the people who lived in the houses by studying their yards and gardens. Some things were very obvious like the yard littered with children’s toys. That, of course, told me that children lived there, and based on they types of toys, I could usually figure out if the children were boys, girls or both. I especially liked the toy-littered yards that had a small, riotous patch of flowers. I imagined the parents of the children wanted primarily to see their children’s minds and souls blooming, but at the same time wanted to share the blooms of nature with them.

The yards which were immaculately groomed – walkways edged, grass precisely mown, hedges all uniformly level – I imagined to be the yards of retired couples, people who had both the time to attend to their yards and the inclination to continue contributing to something growing since their children’s growing had taken them to homes of their own.

I then passed a yard that was nicely groomed but which still had a few weeds and untrimmed hedges erupting into colorful blooms of questionable heritage. That, I believed, was the yard of a single person or a young, childless couple. These were people practicing their nurturing skills with Mother Nature but who still found the time for dating, socializing, and people-hunting.

The very beautiful yard I passed next seemed planned out to the tiniest detail. All the flowers were white. They were planted to best show their full grandeur, and the regimentation of their placement made me imagine that everything in the homeowners life was just as rigid and controlled.

Then came my yard. I slowed my walk as I approached my yard and tried to conceive what others might perceive. My lawn, while taken care of, is not perfect. The beautiful green color comes more from weeds than actual grass, but my oldest son keeps those weeds nicely mown. I have several mulched areas (more mulch means less grass mowing) in which I plant. I like bushes and shrubs that are more free-flowing than precisely shaped (forsythia, for example). I like having flowers, trees and bushes that bloom at various times during the warm weather thus offering an ongoing display of color. And, I like lots of color. I am not a person who spends too much time making sure my flowers color coordinate. I have purples, pinks, reds, whites, yellows and many shades of green. My flowers also come in many different textures. I actually did plan that part of it.

My yard reflects my life. I revel in diversity – many colors, shapes and textures. Ashley has taught me the joy of difference, and the rest of my children have taught me the value of nurturing those differences. I hope anytime someone passes my house and yard they will pause to consider how beautiful diversity can be.

Monday, May 14, 2007

Black Jello

Comedian George Carlin said, “You know what we need – black Jello.” Think of the fun you could have if you served black Jello for dessert one evening! Something totally unexpected can add a special brightness to a day. In fact, as human beings, even though we seem to fight change, we also seem to expect and even want difference sometimes.

Each year, fashion designers struggle to come up with new and unexpected clothing designs. The runways are full of models wearing unique outfits each season. If a particular designer sticks too much to the tried and true, he or she is bashed in the fashion press.

For people fortunate to be able to afford a new car, different designs and a selection of many options and features are expected. We want to experience the OnStar lady talking to us. We want GIS systems to guide us to our destinations. Often we measure our level of success by the differences in our vehicles (think Hummer).

Even our schools embrace difference as long as it is coupled with fun. Remember Spirit Week in School? As the end of the school year and exams approach, school principals allow students to have fun with what they wear to school. There is Twin Day when two students can dress alike, Pajama Day when students get to wear their PJs to class, and Crazy Day when different colored shoes, plaids and stripes, and underwear worn on the outside of jeans show up. The students look forward all year to their Spirit Weeks.

As adults, we take vacations each year to break up the monotony of our work lives. We need something different whether it is a trip to a ski lodge, the beach, or just a week at home doing nothing. Our sanity often depends upon our throwing out the ordinary in anticipation of the non-routine, unexpected joys to be found on vacation.

In every part of our lives we seem to relish the unexpected, the joy of difference, the new, the unusual, the diversity of change – every part, that is, except our acceptance of people who are different, unique and diverse.

Why do we avert our eyes when we see someone who has both eyes closed as they walk because they are blind? Why do we cut a wide swath around a person who has cerebral palsy and walks a little crookedly? Why do we stare at an adult in a restaurant who has to have help cutting his meat because he has very limited use of his arms and hands? Why do we refuse to have a child with significant disabilities in the same classroom as her same-age peers without disabilities? Why do we lock away people who are different and say it is for their well being? We do it because we are hypocrites.

As long as change and difference are comfortable and fun, we have no problem embracing them. Differences in people make us uncomfortable, and God forbid any of us should be uncomfortable.

I am grateful for the people who don’t mind being initially uncomfortable only to find the beauty and joy in diversity. I am grateful for those who embrace difference and find the fun in it. I am grateful for the people who would eat black Jello…

Friday, May 11, 2007

Hell = Saint You Know Who Emergency Room

August 7, 2006
Saint You Know Who Hospital Emergency Room

Ashley knew where she was the minute we tried to push her wheelchair through the emergency room doors. She was probably alerted by the hospital smells and the sense of many anxious people around her. Already in intense pain, she pushed herself back in her wheelchair as hard as she could, tensed her body and uttered “eye-ya-uh”, her deaf-speak for “What the hell?”

Ashley is 11 years old and deafblind. Born 14 weeks prematurely, she has had two brain tumors removed, many ear and eye surgeries, her gallbladder removed, and a g-tube inserted into her stomach for feeding. She has been in hospitals literally hundreds of times since she was born – and at Saint You Know Who Hospital enough times to have a wing, or at least a meeting room, named in her honor. Throughout the years, she has become accustomed to hospitals and usually tolerates them well. Today, with the intense pain she was feeling, was an exception. Two months ago, a nurse practitioner associated with the hospital and with Ashley’s gastroenterologist wanted to experiment with a differently designed G-tube for Ashley. The experiment went horribly wrong and resulted in lacerations, bruising and swelling to Ashley’s G-tube stoma (the hole into her stomach). Since that day two months ago, Ashley had many problems with the g-tube stoma including infections and continued pain. She had already been at the emergency room once before with the problems, and had also had several visits to the pediatrician’s office. But again today the pain and swelling took a turn for the worse, and another visit to the emergency room was needed.

Ashley’s anxiety level began to rise significantly and her desire and ability to communicate via sign language diminished. Her communication was now visible primarily in her behavior. As we moved to the registration desk, Ashley began fighting me and her aide, hitting us, trying to bite us, and kicking us. She threw her comfort object (a ball of her favorite pipe cleaners and beads) hard against the glass window of the registration booth. A hospital volunteer leaned in and whispered “Maybe you should take it away from HIM.” I stared in amazement at this person who had no knowledge whatsoever of my daughter with exceptional special needs trying to tell me how to handle her anxiety. Ashley’s aide looked at the volunteer with suppressed anger in her eyes and said “I think we can handle it.”

The woman at the registration desk was sympathetic to Ashley and our problems in trying to contain her aggressiveness. She moved as quickly as she could to get us registered, and then moved us just as quickly to triage, the place where a nurse evaluates the patient before moving back to the actual emergency room and treatment. Unfortunately, there was no nurse in triage, and again Ashley panicked, began flailing her arms, hitting me and her aide, biting herself, trying to bite us, hitting her head over and over again, and trying desperately not to allow her chair into the very, very small triage area. Another parent holding a toddler and waiting for admission to the emergency room was sitting behind Ashley’s wheelchair. When Ashley threw herself back in the chair yet again, she was inches away from hurting the mother and her child. Still, the triage nurse had not arrived. When she finally did arrive, Amy, Ashley’s aide, and I were doing our best to physically hold Ashley in her chair, all the while trying to avoid being bitten and kicked. Amy has a broken wrist and I have rheumatoid arthritis which means my joints are painful and swollen most of the time. I believe it should have been obvious, especially to medically trained people, that we were having an extremely difficult time.

When the triage nurse finally arrived back at her station, I immediately asked for assistance with Ashley’s aggressive behavior. She told me she would get to that but had to get some information first. So, while Amy and I physically immobilized Ashley as best we could, sustaining injuries during the process, I went over yet again the extent of Ashley’s disabilities. I also again asked for assistance and the triage nurse told me she was working on that. Ashley was working on hurting herself and biting me.

Finally, the triage nurse had called enough people, three I believe, to get someone to meet us at the main emergency room door and escort us back to a room. Still, Amy and I were physically trying to restrain Ashley and keep her from hurting herself even more. As we walked past the nurse and doctor station in the pediatric emergency room, three people behind the station (all nurses, I assumed) stared without stopping. Had any of my three children stared like that, I would have disciplined them. No one smiled. No one greeted us. No one said anything – but the staring continued. We were ushered into a room, the same room where several years ago Ashley had almost died. She remembered the room.

At the door to the room that Ashley remembered from the time when she had been intubated and finally medically paralyzed to stop a seizure, she again threw herself back in her wheelchair, again injuring me. When she realized that she would be able to lie down, she did settle down. Her pain subsided somewhat when she was lying down. So, she was agreeable when it came time to transfer her to the hospital bed.

The nurse that had escorted us to the room said nothing. She left the room, but returned a few minutes later with a much older nurse, and said she needed to get vital signs on Ashley. I was worried that if Ashley became aggressive again, the older nurse would be injured. It was obvious that she would not be a physical match for Ashley. Amy and I were communicating with Ashley via sign language, which was a good thing because the two nurses made no attempt to communicate with her at all. Ashley cooperated through the blood pressure and temperature check because her pain had subsided somewhat since she was lying down. She was however very cold. As the nurse left the room, I asked if we could get Ashley a blanket.

Ashley was shivering and her teeth were chattering because she was so cold. I could see the goose bumps on her arms. Since we had no blanket, and couldn’t see if anyone was bringing one, Amy started looking through the cabinets in the room. She found a thin sheet, and we wrapped Ashley in that.

A nurse-practitioner came into the room. She did not introduce herself but she did have a badge on. She looked at Ashley, made no attempt to touch or communicate with her, but asked me what the problem was. I explained the whole story about the g-tube problems, and told her that the problems had surfaced again today, resulting in extreme pain for Ashley. The nurse-practitioner asked me what I thought the problem was with the G-tube. Sarcastically, I admit, I said that if I knew what the problem was, we probably wouldn’t have come to the emergency room. The nurse-practitioner asked me what I thought needed to be done. I’m sure the sarcasm was apparent in my eyes when I said “Perhaps we need to call Dr. W., Ashley’s gastroenterologist, and see what he recommends.” She said “Okay”, but said first we would get an X-ray to see if the tube was placed correctly and functional. She didn’t actually say functional but used a term I had never heard before. I had to ask what the term meant. She told me and then turned and left the room.

Ashley was still shivering. She signed “cold” and “hurt” and then started hitting her head.

I walked out to the nurse’s station, waited approximately 3 minutes for anyone to look up from what they were doing, and even though no one asked what I needed, I said again that a blanket was needed for Ashley. The nurse that had escorted us to our room turned and went to get a blanket. She then brought it into the room, handed it to me and left without saying anything. Soon after that, a person I had not previously seen, walked in and said she was taking Ashley to X-ray. As with every other person we had seen or interacted with that day, she did not smile; she did not greet Ashley; she said nothing.

Ashley was cooperative as she was being wheeled on her bed to X-ray. She had Amy and me beside her and she had her battery toothbrush, an object that she often uses to comfort and calm herself. She was even cooperative as two people in X-ray slid her from her bed to the X-ray table.

The X-ray technician was preparing the dye to be inserted into Ashley’s G-tube to get a picture of what was happening internally with the tube. The technician approached Ashley with a 60 ml syringe but then looked puzzled trying to figure out how she was going to get it into the tube. I asked if she had one of the required G-tube connectors, and she said she did not. I told her that was the only way to get the dye into the tube. I then offered that I had a connector back in Ashley’s ER room which I had brought just for a situation like this. The technician said nothing, but I opened the door and asked Amy to get the connector for me.

Once I had the connector, I accepted the syringe of dye from the technician and inserted the dye into Ashley’s tube. As the technician was preparing the slide for the X-ray, I asked if I needed to put on one of the protective aprons. She said “Oh yea, you do.” I’m glad I asked. The X-ray was taken, and Ashley was returned to her ER room.

A long time went by before anyone came back into Ashley’s room. Fortunately, Ashley’s battery toothbrush was doing the trick for keeping her calm, but it was obvious that she was getting tired of being in the bed and in the room. Finally, the nurse-practitioner returned to the room and said everything looked fine on the X-ray. When she said nothing else, I asked why Ashley was in pain and what was going to be done for her. The nurse-practitioner said that we were to go and see Dr. W. in his hospital office.

As Amy and I were attempting to get Ashley to move from the bed back into her wheelchair, the nurse who had shown us to our room arrived with discharge papers for me. She stood by, not saying a word, as Amy and I continued to struggle with Ashley. When I saw that Ashley was again becoming agitated and aggressive, and I was worried that she might be about to hurt Amy, I lunged forward to restrain her. I caught my foot on Ashley’s wheelchair and fell, bruising and cutting my left shin. I pulled my pants leg up and saw blood dripping and the bruise already starting to form. The nurse turned and left the room, never asking if I was ok, if I needed anything. Amy and I got Ashley into her wheelchair and started out of the room. With blood dripping from my shin, the nurse handed me the discharge papers to sign.

Since Ashley was once again in her wheelchair in the position that caused her the most pain, her aggressive behaviors again increased. She struck herself in the head more times than we could count, and both Amy and I were doing our best to restrain her and push her wheelchair at the same time. We had about a 25 minute wait in the doctor’s waiting room, enough time for Ashley to throw almost every toy in the room and totally tear apart a silk flower arrangement. When the nurse finally called us back, she took us first into a room where Ashley would be weighed and have her height checked. Since Ashley’s behavior was increasing and because I could share with the nurse the height and weight taken at the pediatrician’s office less than a week prior, I didn’t understand why this step couldn’t have been skipped. But, it could not according to the nurse.

After the height and weight struggle, we were ushered into an examination room, where we spent the next 45 minutes trying to keep Ashley from hurting herself or us anymore than she already had. During that 45 minutes, Amy walked to the nurse’s desk and tried to explain the seriousness of the aggression and why waiting was not working. But still we waited. I then walked to the nurse’s desk and was told the doctor would be in very soon. Very soon meant another 15 minutes.

Dr. W. walked into the room, donned gloves, and while Amy and I were lying across Ashley to try to keep her still and not hurting anyone, Dr. W. examined her G-tube area. He said there was scar tissue that had grown and that it needed to be chemically treated with silver nitrate. The only time anyone had to use silver nitrate on Ashley before was right after the tube was inserted when she was two years old. This fact only served to confirm my thoughts that the brutal attempt at a different model of G-tube was the original cause of all Ashley’s current problems.

In less than 5 minutes, Dr. W. was in the office, used the silver nitrate, and exited the office. Finally, it was time for Amy, Ashley and me to go home. It was impossible to tell which of us was the happiest at that point.

The day all this transpired, Monday, August 7th, began as a pretty normal day. But, by the time Ashley arrived at school, she was bleeding from her G-tube and complaining of intense pain. Little did Amy and I know at that time that a 5 minute procedure would address the problem Ashley was having. Little did we know that we would spend four and a half hours getting to those 5 minutes.

Ashley was so happy to be home. Even though the silver nitrate was stinging a little, the comfort of her home, surrounded by people who love her, respect her, and treat her with dignity was enough to help her settle down and return to the loving, happy child she normally is. After dinner, she fell easily asleep, but I worried if she would dream of the trauma, the disrespect, and the inhumanity she had endured during the day.

The Epilepsy Shake, Rattle and Roll

Ashley started on a new seizure medicine yesterday – her third, which means she now takes three medicines to try to control her seizures. This is pretty new territory for both Ashley and me because for about seven years, one medicine controlled her seizures very, very well. However, over the last six months, her seizures have re-appeared at the alarming rate of 3-5 a day, and some days even more. It may take 2-3 weeks for the new medicine to reach a level that will hopefully be effective in controlling the seizures. Unfortunately, the side effects of the new medicine have the potential for being worse than the seizures.

I know I shouldn’t complain because one of my friends has a daughter who is on seven seizure medicines and still has seizures. The son of another friend had a Vagus Nerve Stimulator surgically implanted to help with his seizures. And, another friend has a young child having 200-300 seizures a day. No matter how many seizures your child has, it is always very scary and very difficult for both the child and the rest of the family.

Ashley’s neurologist has scheduled an MRI of her brain to see if a brain tumor exists. Ashley has had two brain tumors removed in the past, so having another one is a very real possibility. Fortunately both the tumors she had in the past were benign and that information leads the doctor to believe that any new tumors would also be benign. It will be about a month before the MRI will occur which makes me feel a little better. The fact that the doctor doesn’t feel an immediate need for the MRI has helped allay some of my fears. Still, those of you who know me well, know I will be worried sick until we get some answers.

Through all of this, Ashley is still the vibrant, happy, exuberant person she has always been. She is strong and will face this new challenge head on (no pun intended). She is setting an example for me to follow. She is my precious child, and I just want to make everything okay for her….

Monday, May 7, 2007

Time To Clean The Toilet, Sweetie

Disciplining a teenager is difficult for me, especially when the teenager needs lots of discipline. I don’t believe in corporal punishment so hitting them is not an option (that and the fact that they are bigger than me). Confining me to my room was a technique used by my parents, but in this day of I-Pods, computers and such, being stuck in your room is not such a bad thing (that and the fact that at least one of my teenagers would be sitting in his room plotting his next moves). I have tried the removal of privileges, such as taking the I-Pod, the video games and the TV, but eventually, I ran out of things to take away. So, my current strategy is finding extra chores for the offending teenager.

My car could always use a good washing. The house windows could always sparkle more. A bathroom can never be too clean and neither can the dog. Pulling weeds helps develop fine motor muscles. Having to launder your siblings’ clothes definitely gives a teenager time to think. And, I don’t believe I will run out of extra chores anytime soon.

My neighbors always comment on how nice my yard looks – so well manicured, flowers planted, no weeds, etc – and ask how I do it as a single, working mom. I just smile and say “I have lots of help…”!!

Wednesday, May 2, 2007

Father Charged in Death of Disabled Daughter

The father of a 10 year old girl with disabilities has been charged with her death. Quiniece Lockett was blind, partially paralyzed and had cerebral palsy, and her father was her ‘paid caregiver’, according to the article linked below. He had no other employment.

I was sickened by reading the article. Some days I just don’t want to be part of this so-called human race….

The Queen and The Princess

On May 3, Richmond, Virginia will be the first American city to officially welcome Her Majesty Queen Elizabeth, II in sixteen years. Public excitement is high, but I’m surprised the people of Virginia – ok, well at least the people of Richmond – don’t realize that they already have a Princess in their midst. My sweet Ashley was officially designated a Princess 4 years ago by Mickey Mouse.

Four summers ago, Ashley was granted a wish by the Make A Wish Foundation. Her wish was to meet Mickey Mouse. So, we traveled to Orlando (Ashley’s first airplane flight), set up house at the Give Kids The World Resort, and hurried to meet the Head Mouse. As we walked through the gates to the Mouse House, Ashley was handed a tiara and a scepter, and as she received a kiss from Mickey Mouse, was told she was officially now a Princess! She has adapted to her role quite well.

Like Queen Elizabeth, Ashley enjoys frequent walkabouts in the neighborhood. Befitting her role in society, she chooses to wear dresses most of the time – even to bed each night. She doesn’t share the same fondness for gloves as the Queen, but she does carry herself regally through life bestowing smiles upon her subjects. The Queen prefers hats with flowers for her many public appearances. Ashley prefers to eat flowers. As protocol dictates, one never tells the Queen that they are ‘pleased to meet you.’ Likewise with Ashley. She and the Queen are secure in their knowledge that EVERYONE is pleased to meet them. Anyone dining with the Queen should know that when the Queen stops eating, everyone else must stop eating. That wouldn’t be an issue when dining with Ashley – she never stops eating.

As shown in the picture above, the Queen (age 2, 1928) wore jewels even as a youngster. Jewels have always been one of Ashley’s favorite things, and she spends a great deal of time each day assembling her jewelry works of art. Like Queen Elizabeth, Ashley will be wearing her tiara tomorrow, and I’m sure both of them will be secure in their birthright, their impact on history, and the all-encompassing devotion of their subjects. Long live the Queen and the Princess!

Tuesday, May 1, 2007

I've Got My Hands in What????

Of the many things I want my children to experience and learn, planting and growing a garden is near the top of the list. For Ashley especially, a vegetable and herb garden represents a world of sensory experiences. The vibration of the tiller makes her whole body shake, and the ‘ah-ah-ah-ah-ah’ she voices makes her giggle uncontrollably. The application of manure to the dirt causes both Ashley and my other children to turn up their noses in disgust and then whisper behind their hands other more crude words for manure. But, I see their sense of pride as they rake the dirt into neat rows.

The trip to the garden center for plants is a much anticipated rite of spring. Although I choose the more common ‘salad’ vegetables (tomato, cucumber, peppers, squash), the kids love to find the more uncommon plants – things like okra, spaghetti squash, and asparagus. More often then not, our uncommon plants don’t do well, but they are still fun for experiments. We throw in a few herbs, including catnip for our two cats, and head home to plant our ‘babies’.

Ashley and my other kids love to plant and get their hands dirty. I guess they have forgotten that they are also getting manure on their hands! They have contests to see who can find the first worm, and then of course, they yammer about how long it has been since we have gone fishing. Sometimes I wonder how the baby plants will survive the less than gentle planting, especially from Ashley, but somehow they almost always do survive. We then spend the rest of the summer watching (and feeling, in Ashley’s case) our babies grow and produce the food we all love so much.

So, here’s to marinated cucumbers, tomato sandwiches, and zucchini corn fritters. And, here’s to kids, no matter their age or ability, learning that they can play a part in bringing dinner to the table!

2 cups all-purpose flour
1 tablespoon baking powder
1/2 teaspoon cumin
1/2 cup sugar
1/2 teaspoon salt
fresh ground black pepper
2 eggs, beaten
1 cup milk
1/4 cup butter, melted
2 cups grated zucchini
1 1/2 cups fresh corn, kernels cut from cob
1 cup finely shredded Cheddar cheese
oil for frying

In a large bowl, stir together flour, baking powder, cumin, sugar, salt, and pepper.
In a small bowl, whisk together eggs, milk, and butter. Whisk wet ingredients into dry ingredients. Stir in zucchini, corn, and cheese; mix well.

Warm oil in a cast iron skillet over medium-high heat. Drop batter by the tablespoonful into hot oil. Fry until crisp and brown, turning once with tongs. Remove to paper towels.