Saturday, January 27, 2007

A Dog's Life

I watched a news piece the other day about a very special place called the Rolling Dog Ranch. As the Ranch’s website states “The Rolling Dog Ranch Animal Sanctuary in Montana rescues and shelters disabled animals. Every animal who arrives at the sanctuary gets another chance to have a safe and loving home. Our residents include blind dogs, blind horses, deaf dogs, blind cats, and others with medical issues like muscular dystrophy.” Very interesting…

The entire focus of the news piece was about how the animals, though disabled, are just like any other animal. Alayne Marker, one of the two ranch owners said “Although these animals may have disabilities, they do not consider themselves handicapped. They just want to get on with life and enjoy themselves.” She related how they just really want to be dogs and cats and not treated or thought of any differently than any other dog or cat. Very interesting…

According to another statement on the website, “The sanctuary’s disabled residents are remarkable animals. They are happy, energetic and loving. Many of our visitors can’t believe the animals they see romping with each other and running around are blind or cope with some other kind of handicap. There isn’t a single animal here who feels sorry for itself. Each and every one of them loves being alive. That’s really the ultimate inspiration for us. Despite their disabilities, they want nothing more than a chance to enjoy life.” Very interesting…

A couple who had adopted an animal from the ranch was also interviewed about the dog they had adopted. They, along with the ranch owners, kept stressing how wonderful their dog was and how life with the animal was no different than life with a non-disabled dog. The couple said the dog accompanied them everywhere they went and took part in all the “normal” dog activities. Very interesting…

There were some things I didn’t hear during the interview. I didn’t hear that the couple’s adopted dog wasn’t welcomed by the other dogs in their neighborhood. I didn’t hear that the couple’s friends and acquaintances were afraid or uncomfortable around the adopted dog. I didn’t hear that the dog was treated as inferior or less intelligent by other humans. I didn’t hear that there were kennels, doggie daycares, or dog obedience schools that refused to accept the adopted dog. In fact, I didn’t hear anything negative about the dog. It was obvious that the dog’s new owners loved their animal very much and that their dog’s life and abilities were constantly being celebrated and lauded. Very, very interesting…

Monday, January 22, 2007

Welcome to our Family

Ashley had surgery today – surgery to remove a cholesteatoma tumor between her ear and her brain. She’s had this same surgery three times before and it never gets easier for her or for me. But today was different. It did seem easier at least for me because I had help from a special and dear friend.

I adopted Ashley when she was two years old, just weeks after spending a week beside her bed in the hospital for the removal of a brain tumor. Since that time, I have lost count of all the other surgeries she has had. There have been ear surgeries, eye surgeries, tonsil and adenoid surgery, surgery to remove more tumors and surgery to remove her gall bladder. I have been by her side through all of this, but I have always been alone. I’ve stayed strong and tried very hard to not let Ashley see the worry in my eyes. When I was exhausted from the stress and having to balance my time at the hospital with both my full-time employment and being a good mom to my other children, I had to keep going and tell myself that I would catch up on sleep later. Unfortunately, I never did catch up on that sleep, and the toll of that lifestyle has become increasingly more difficult each year. But today it got a little easier. Amy was with me.

Amy is Ashley’s personal care assistant, a person employed by the Department of Medical Assistance Services to help Ashley. She helps Ashley with activities of daily living – bathing, tooth brushing, grooming, and learning the things she will need to master to become an independent adult. She helps Ashley with her homework, and helps her with her physical therapy, speech therapy and occupational therapy assignments. And while all those things are very important, what Amy really brings to Ashley’s life and to the life of our whole family is love. She has become such an integral part of our lives that it is hard to imagine our life without her.

Amy is like a big sister to my two teenage sons. She is not much older than they are and they can relate to her in ways they can never relate to me. She stands as an example of success, compassion, and the value of commitment and caring to them. She is the fun big sister who buys them baseball caps and takes them for pizza. She counsels them on school dramas, and helps them learn how to treat other people. She insists they show respect for me, and will call them down in a split second should they ever display negative behavior. And although both boys would never admit it, I think they really enjoy having her as a confidant and advisor.

Amy is also probably the second most important person in Ashley’s life. I like to think that I am the first most important person to Ashley, but Amy runs a close second! I know that Ashley feels Amy’s love and under her care, Ashley has progressed in ways that I sometimes find hard to imagine. Ashley’s kisses on Amy’s cheeks, her sign language “I Love You’, and her snuggles on Amy’s shoulder give testament to the fact that Ashley and Amy share a very special and close bond.

To me, Amy is a friend unlike any I have ever had. Though decades apart in age, we have grown very close as we have discovered how many philosophies we share. I would be so proud to have a daughter like Amy, and I am very proud of the person she is and the decisions she makes for her life. I look forward to the times we share whether those times include Ashley or not. I am very grateful that Ashley brought Amy and me together, and I feel so blessed to have her as a friend and a part of our family.

Thursday, January 18, 2007

Ashley's Future

I was recently asked a question by a remarkable young man named Jonathan Mooney. The tag line on Jonathan’s website is “Author, Public Speaker, Different”. The publisher of his two books describes him on their web page:

A young man, once called unteachable, journeys across America to investigate the lives of those, like himself, who are forced to create new ways of living in order to survive.

Labeled “dyslexic and profoundly learning disabled with attention and behavior problems,” Jonathan Mooney was a short bus rider—a derogatory term used for kids in special education and a distinction that told the world he wasn’t “normal.” Along with other kids with special challenges, he grew up hearing himself denigrated daily. Ultimately, Mooney surprised skeptics by graduating with honors from Brown University. But he could never escape his past, so he hit the road. To free himself and to learn how others had moved beyond labels, he created an epic journey. He would buy his own short bus and set out cross-country, looking for kids who had dreamed up magical, beautiful ways to overcome the obstacles that separated them from the so-called normal world.

In The Short Bus, his humorous, irreverent, and poignant record of this odyssey, Mooney describes his four-month, 35,000-mile journey across borders that most people never see. He meets thirteen people in thirteen states, including an eight-year-old deafblind girl who likes to curse out her teachers in sign language. Then there’s Butch Anthony, who grew up severely learning disabled but who is now the proud owner of the Museum of Wonder. These people teach Mooney that there’s no such thing as normal and that to really live, every person must find their own special ways of keeping on. The Short Bus is a unique gem, propelled by Mooney’s heart, humor, and outrageous rebellions.

See that statement in the third paragraph of that description that says “including an eight year old deafblind girl who likes to curse out her teachers in sign language”? That’s my Ashley!!

Now back to the question Jonathan asked me. During Jonathan’s research for his book, he traveled to our home and spent a long time getting to know our family. After meeting Ashley, he asked “What are your hopes for Ashley”? This was my answer:

I think my hopes for Ashley are very similar to what she wants for herself. I hope for a life for her full of love and fun. I want her to feel safe. I want her to be as independent as possible, and as she is comfortable with. I want her to continue to feel the security of a family and friends. I want very much for her to be accepted into society and appreciated for her unique gifts. I want her to find a job she enjoys and one in which she feels she is making a difference. I want her to continue to enjoy all the sensory things life has to offer, and to never lose her spirit of exploration and joy.

I hope to help her hone her self-advocacy skills, and to know what she wants and how to go about getting it. I want to instill in her the skills to cope with disappointment and pain, and how to go forward when it seems easier to stand still.

I hope she can find that special person who will be with her for the rest of her life and who can travel life’s wonderful journey by her side.

In short, I want what every parent wants for their child.

Jonathan understood this answer perfectly. I wish the rest of society did as well.

Make sure to look for Jonathan’s book starting in June 2007. Here is a link to his publisher’s website – Do a search on author last name (Mooney), and you will find his book. Trust me, it will change your life.

Wednesday, January 17, 2007

Homework with Vanna

Most responsible parents (a group to which I like to think I belong) discourage their children from doing their homework in front of the television. I’ve lightened up a bit since my children have moved to middle and high school and will let them listen to their I-Pods while doing their homework. But, if their grades start to falter, the I-Pods are history. Those rules apply to everyone but Ashley.

Several years ago, during Ashley’s early elementary school years, she loved to watch Wheel of Fortune each evening. I don’t think the producers of that show realized that they were designing a TV show that was almost perfect for a child with visual and hearing impairments. At first, Ashley would just follow the ‘little Vanna’ on the screen, back and forth as the letters were turned. In the world of visual impairments, that skill is called ‘tracking’ and it is something vision teachers work on all the time with their students in school. Ashley moved from there to pointing out Vanna’s shoes and sparkly dresses and learning sign language for ‘pretty’, ‘dress’, and ‘shoes’. Soon we were adding ‘walk’ and ‘smile’. Vanna even got her own sign, a ‘V’ made with the fingers, like the victory sign or the bunny in the fingerplay, Little Bunny Foo Foo. So now, Ashley’s homework involved tracking and practicing her sign language skills. Learning letters of the alphabet became the next logical step in the Wheel of Fortune Curriculum!

Here again, the show’s producers made the letters of the TV screen large, colorful and bright – a perfect combination for a child with visual impairments. And, the contestants who called out the letters, usually did so in a loud scream – a perfect foil for Ashley’s hearing impairment. While the contestants worked on solving the puzzles, Ashley worked on identifying letters and numbers.

Although Ashley has now moved on to more traditional academic methods, I know “little Vanna’ holds a special place in her heart. Most little girls love the Disney princesses. But Ashley would choose Vanna any day over the princesses. The princesses glide around, their feet almost never showing, talking in sweet, quiet voices. Their movements are restrained and lady-like. Vanna, on the other hand, walks – no, strides – across the stage. Her arms move up and around to display the letters. Her big movements, even on the little screen, mean Ashley can see them. Ashley never could see the tiny hand movements of the Disney princesses or the tail flicks of Ariel the mermaid. Wheel of Fortune, and specifically Vanna White, are custom made to entertain AND educate a child with visual and hearing impairments. So, Ashley, go in the family room right now and do your homework with Vanna!

Saturday, January 13, 2007

A Tale of Two Ashleys

My Ashley and the Ashley in Seattle are both young girls around the same age. Both have smiles that light up a room. Both have gorgeous eyes and thick dark hair. Both have significant disabilities. That is pretty much where the similarities end.

Ashley in Seattle had decisions made for her that will forever alter the course of her life. She had no say in whether or not she wanted her uterus removed, her breast buds and milk glands removed and massive doses of hormones injected into her. She had no say as to whether she wanted to remain a child for the rest of her life or wanted to grow and mature like every other young girl. As her siblings grow, she will forever remain a young child. She will watch her parents grow old and will perhaps wonder why everyone around her changes but she does not. All of these decisions were made for her by her parents, parents who decided these things were in her best interest.

I read about the reasons for their decision – she will never be bothered by menstrual cramps; her breasts will not grow so large as to be uncomfortable for her; her mature body will not invite abuse at the hands of a caregiver; she will be easier to handle, move and bathe because she will remain the size of a child. But I don’t understand these reasons.

Menstrual cramps can be controlled by medication, warm compresses or birth control medication. Overly large and uncomfortable breasts can be reduced surgically. Abuse can be prevented by the presence of a loving, vigilant caregiver. And, entire industries exist to provide specialized equipment for the disabled. Assistance is available through Federal, state, and private insurance and disability programs. Her parents may have had to fight, maybe even litigate to get that assistance, but it can happen. I know – I’ve done it for my Ashley in a state ranked 47th in services to people with disabilities.

Is calling her a ‘pillow angel’ her family’s way of making their decision appear to be divinely guided? Was brutality the easy way to solve the issues? An even easier way would have been to let another family deal with the issues – a family that believes in the dignity of each and every life. I would have gladly raised Seattle Ashley and helped her become the beautiful, mature woman I believe she was meant to be. I would have maintained close contact with her birth family so that they didn’t feel like they were giving up on her. I would have solved each and every one of the issues they said were the reasons for surgically altering her. I would have loved her for the person she is and is meant to become. I still would.

I am very, very angry over what has happened to Seattle Ashley. I don’t understand why child protective services played no role in this tableau. I don’t understand the doctors who went along with this extreme decision. I don’t know what to do but I know I want to do something. What I want to do most though is to look in Seattle Ashley’s eyes and tell her how very, very sorry I am.

Friday, January 12, 2007

Hello Mom

Your birthmother and I shared emails again today. She is worried about you and your upcoming surgery and wishes she could be there for you. I know without a doubt that you will be in her thoughts and prayers that day as you are every day.

I know she misses you and wishes her life could have played out differently with you. Sometimes things are beyond our control regardless of what the doctors or counselors say. Sometimes our families don’t understand the demons we hide from or our reasons for deciding to battle those demons. We can’t always explain our choices to others because we don’t even understand them ourselves. We wish harder than we have ever wished for anything that we could go back and make better choices, and the fact that we can’t makes us even sadder. However, I believe all mothers, any mother, has the strength to battle that sadness. But we sometimes have to dig to our very core to find that strength.

I believe your birthmother has that strength. I believe she wants the very best for you while wishing you could still be with her. I believe she believes that you are meant to be with me and that I am making a wonderful life for you. I believe she knows I love you more than life itself and that I will always do whatever I can to keep you happy and healthy.

Although she gave birth to you, I feel as if you came from my body. I know you came from my heart. I know we were meant to be and always will be. I feel your love and I know you feel mine. Because of that, I have no fear of bringing you back together with your birth mother. I wish all adoptive families could feel that way.

Tuesday, January 9, 2007

Burps, Rasberries, and Cheetos

About a year ago, my son, Chip, said he wanted to be a special education teacher when he got out of school. That sure warmed my heart to think that someone with his special breed of compassion and intelligence would want to teach children like his sister, Ashley. Of course, since the whims of teenagers are fleeting, he now says he wants to work with a satellite radio company. Personally, I think his primary motivation is that he thinks he could score some free radios that way. But he really would make a great teacher.

He taught Ashley to do all the fun kid things that moms just can't bring themselves to do - things like how to burp really loudly and at the most inappropriate time and how to 'moon' someone, or at least make them think you are going to do that. When she was refusing to eat anything but a brown goo-like substance suggested by her feeding therapist and prepared by me in a blender with potatoes, beans and deviled ham, he taught her to eat Cheetos. Now, 6843 bags of Cheetos later, I wish he would teach her to eat something a little healthier!

He has taught her to say 'uh oh', 'Chip' and 'yuk', and this is a major accomplishment since she is deaf. He has taught her how to squirt people with the garden hose and how to throw a ball really far. He has taught her to blow rasberries on his belly and how to look really cool wearing a cap sideways. He has taught her to wrestle and how to share, to find edible leaves and how to wrap up in a blanket until she looks like a burrito.

He has, in short, been a wonderful and perfect big brother, and Ashley loves him the best!

Sunday, January 7, 2007

No Boys Allowed

My day starts really early - 4:30 am to be exact. With four children, three of them with significant special needs, there is always a lot to get accomplished each day. And, the only way I can do that is to get up early, stay up late, and drink a lot of caffeine. So, if I ever get a few quiet moments, I treasure them. One of those treasured times is having breakfast with my sweet daughter, Ashley.

Ashley is very calm in the mornings. Maybe it is because she is still a little bit sleepy - I would be if I had been up partying half the night. Maybe it is because her ADHD meds are working really well, or maybe she just likes quiet mornings as much as I do. After I am up and ready for the day, I prepare all Ashley's meds. I then slowly wake her, administer her meds through her G-tube, and then help her get dressed. As she explores her toys or books and watches the Disney Channel, I get our breakfast ready. When we sit down together to eat, I don't have to work on her feeding issues, behavior issues, or school work - we just enjoy the time together and have a leisurely breakfast, making this one of my favorite times of the day. Because of that, I really get cranky if one of my boys decides to get up early and interrupt this morning routine.

Boys can't be quiet in the morning. They make lots of noise both opening and closing the cabinets. Their cereal bowl clanks into their plate. They slam the toaster controls into place, and the silverware rattles as they pull a spoon and a knife out. Then the real noise starts when they sit at the same peaceful table oasis where Ashley and I are sitting.

Boys slurp their cereal, gulp their juice, and crunch their barely toasted toast. Nothing about their meal is quiet and peaceful. The TV, of course, must be on to show all the latest scores, and comments must be made regarding those scores. They have to yell at the cat for cleaning out the last bit of yogurt from the container that I put on the counter for that specific purpose. They have to use their feet under the table to roughhouse with the dog until the dog starts barking playfully. And then when they are finished breakfast, they run the water like a powerplant to rinse their dishes. I guess I should be grateful they are at least rinsing their dishes. But couldn't they be just a tad bit quieter?

In my house, mornings are made for introverts but my boys are extra-extroverts. And even though Ashley will become just like them later in the day, at least in the early morning, she is a quiet, pensive introvert like her mother....

Thursday, January 4, 2007

This is your brain - this is your brain on pipecleaners

I think it is time for me to explain the title of this blog - Pipecleaner Dreams.

Ashley is an artist. With a few pipecleaners, some wire, and some beads, she creates sculptures. These sculptures are always very colorful and unique, and in fact, change from day to day - sometimes hour to hour. They can get very large, and they must always go everywhere she goes. One never knows when another interesting object might appear and be destined for the sculpture! Because she has to take it everywhere she goes, people assume it is a comfort object - like a 'blankie' maybe. But I think it is more than that.

Ashley is and always has been a child with an active mind. Yes, she is diagnosed with ADHD and active is an understatement, but you can always see the 'wheels' moving just behind her eyes. It seems as if she is always thinking something, and thinking very quickly. You can tell when she communicates through sign language sometimes - she will get ahead of herself and it is difficult to follow what she is trying to say. The only time her mind seems at rest is when she is sleeping, but is it really at rest. I wonder if she is dreaming about pipecleaners even then!

So, this blog is dedicated to my mind-active child. Her strong will and creative problem solving skills are the forces that are propelling her through life, and she is having so much fun along the way. The pipecleaner sculptures are evidence of that. Everyone just looks at them and smiles! In fact, when Ashley presented her pediatrician with a framed sculpture of his own in honor of his retirement, he was touched beyond words. Ashley and her creations continue to touch lives in very profound ways.

Tuesday, January 2, 2007

Funeral Thoughts

Do you think when living presidents attend the funeral of another president that they are imagining how their funerals might be different, how they might be remembered by the American people? I've watched President Ford's funeral on TV all morning. His family looks just like any other family mourning the passing of a loved one. They don't look 'presidential' or more important than anyone else. Mrs. Ford is being so stoic, but if you look into her eyes, you can see her heart is broken and that she is probably wondering if she even wants to go on living. His children are devastated - openly crying and not caring that dozens of cameras are focused on them. The children and grandchildren keep touching, hugging, moving nearer to Mrs. Ford - trying to comfort her just as I comforted my father at my mother's funeral. I can relate to that family. I could not relate to President Reagan's family. I'm not sure why. They just didn't seem as 'real' to me as the Ford family. I cried during the funeral, not because I knew President Ford, or even knew very much about him. I cried because his family brought back memories of my family - my mother's long term illness and final passing; my father's giving up on life after her death and his ultimate death from having lost the will to live; the deaths of my favorite aunts, ladies whose lives I emulate even today. And, morbid or not, thoughts of what I would do should one of my children die.

I almost lost my dear Ashley on Christmas Eve, 1998. She had been sick with a bad cold and ear infection, and started to run a high fever. Ashley has epilepsy, and high fevers can trigger seizures. As her fever climbed higher and higher, I knew that we had to go to the emergency room before the seizure started. Through some divine guidance, I decided to call for an ambulance rather than take her in my car, and that was probably the reason she is alive today.

The ambulance arrived just as Ashley started to seize. They rushed her to the ambulance and then took off with lights and siren going in the direction of the hospital. I followed in my car. Once we arrived at the emergency room entrance and Ashley was being brought out of the ambulance on a stretcher, she was STILL seizing, and had one of those blue bag things helping her breathe. The rescue squad staff rushed her into the hospital while I stood helplessly by.
Finally, one of the emergency room nurses came to me and took me to a private room in the ER, something I realized even at that moment was not a good thing. The nurse assured me someone would be in soon to talk to me and let me know what was happening.
I paced, crying, in that small room and then heard a knock on the door. The hospital chaplain came in, and that was the second thing that I knew did not portend good news. The chaplain told me that the doctors had to paralyze Ashley to get the seizure stopped. But that meant they also had to intubate her - put her on a machine to breathe for her. I was told the just be patient and that soon one of the doctors would come and talk to me.
Once the doctor appeared, he told me she was hanging on and was being moved to intensive care. I was allowed to walk beside her stretcher as they moved her. She was still paralyzed and the respitory technician was squeezing her blue breathing bag as we walked through the hospital halls. Once we arrived at intensive care, I had to wait outside the room while they hooked my sweet child up to all the machines that would do their best to keep her alive.
Ashley is and always has been a fighter. I believe she has plans for her life and that she will refuse to leave this world until she is darn good and ready. Fortunately, she was not ready that night. She recovered slowly but surely over the next three months that she spent in the hospital, touching the lives of everyone who came to know her during that time. Her seizures are pretty much controlled for the time being, but everytime she has one, or everytime she gets sick and runs a fever, I go on high alert.
She is my heart, my life and I will never stop worrying. But isn't that what all mothers do...