Weekly Battles - Weekly Rewards

This week’s battles:

• My attorney and I were once again in Federal Court trying to ensure Ashley’s right to due process was ensured in a Medicaid dispute. This stems from a request that is now approaching 18 months old, and one whose cost to fund would be miniscule compared to the 18 month cost of litigation. Yesterday, for example, the Attorney General’s office had 10 people in attendance for the trial.


• A meeting I was required to attend was held at a location other than my office building. I called in advance of the meeting to ask where the handicapped parking facilities were located. I was told there were no handicapped parking facilities.


• Because of a court subpoena I received this week, I needed to reschedule an IEP meeting for one of my children. I was told by the teacher that all IEP meetings were going to be held in 3 days, the schedule for which was determined by school administration. I reminded the teacher that the state regulations require that the parent’s schedule to attend needs to be considered. I was told by the teacher ‘Sorry, that’s all I have to offer’.

This week’s rewards:

• While waiting for the morning school bus, Ashley signed ‘hear bird music’. Ashley is very significantly hearing impaired. I never thought she would be able to hear birds singing.


• I was a guest lecturer at a severe disabilities consortium class on Tuesday night. The class was composed of students from the University of Virginia, Virginia Commonwealth University, Radford University, Norfolk State University, George Mason University, and Roanoke College. The day after the class, I received an email from one of the participants asking what the process was for adopting a child with special needs. The participant is really serious about adoption of such a child.


• Thursday was Ashley’s birthday. She turned 12 years old. Her doctors had originally stated she would not live past her 2nd birthday.


• One of Jessica’s daily living goals was to learn how to leave a message on a telephone answering machine. While I was at my class on Tuesday night, she left the perfect message – “Hi, Mom. This is Jessica. Please call me back when you get a chance. Love you.”

Fortunately, the rewards almost always outweigh the battles.

Bad Day At Black Rock

It is for us to pray not for tasks equal to our powers, but for powers equal to our tasks, to go forward with a great desire forever beating at the door of our hearts as we travel toward our distant goal.
Helen Keller


So many times when I have talked to other parents of children with disabilities, I see complete and utter exhaustion in their eyes. The sparkle that indicated their willingness to do battle for their child was barely flickering anymore. There was also a sadness there, and the tendency to lower their head and look toward the ground when discussing what was going on with their child. They had been worn down and worn out. They didn’t love their children any less or stop believing in them, but they were tired, very, very tired. When I looked in the mirror this morning, really looked into my own eyes, I saw those same things.

For a parent of a child with a disability (or multiple children, in my case), every day brings battles. Carefree days of just enjoying your family, with no expectations, no learning activities, no concerns over reinforcing activities of daily living, are few and far between. Every waking minute of every day, and usually some of the so-called sleep minutes of the day are spent strategizing. The questions are many and the answers are few.

• How am I going to convince the school system that my child is not progressing and they need to do something different?
  
• How many more times am I going to have to try and explain exactly how my child’s disabilities affect their daily life?
  
• How many more insurance battles will I have to fight for just the most basic of needs?
  
• How many more times will I have to explain to a doctor’s office staff why I need a phone call from the doctor immediately?
  
• How many more times will I have to explain to strangers why my child looks differently and acts differently? How many more times will I have to smile and act like it doesn’t bother me when a stranger just stares?
  
• How many more therapists will I have to ‘educate’ on the best way to approach working with my child?
  
• Etc., Etc., Etc.
  

I’m also tired of hearing what a wonderful person I must be for wanting children with disabilities, what an ‘angel’ I am, blah, blah blah. I am NOT anything special. I am a mother who just wants to enjoy life with her children. I am a mother who wants her children to have those things that are their rights to have, and a few of those things they want to have. I want what is described by many as a ‘normal’ life. I want to play and rest and enjoy, not stress, obsess and fight. I am so tired of all the battles.

I won’t give up – ever. I will fight for my children, and for other children with disabilities, until the last breath is gone from my body. But my body, my heart, my mind and my soul are so very, very tired. My children deserve better and so do I.

Welcome to Our World

Nothing irks me more than so-called experts who espouse theories on parenting, especially when it is obvious that their own parenting experience is as stale as 10 day old bread. Trying to sell his bread to Henrico County parents and teachers this week was John Rosemond, purveyor of ‘Traditional Parenting’. According to Mr. Rosemond’s website:

John Rosemond has worked with families, children, and parents since 1971 in the field of family psychology. In 1971, John earned his masters in psychology from Western Illinois University and was elected to the Phi Kappa Phi National Honor Society. In 1999, his alma mater conferred upon John the Distinguished Alumni Award, given only once per year. Upon acceptance, he gave the commencement address.
From 1971-1979, he worked as a psychologist in Illinois and North Carolina and directed several mental-health programs for children.

From 1980-1990. John was in full-time practice as a family psychologist with Piedmont Psychological Associates in Gastonia.

Presently, his time is devoted to speaking and writing. John is syndicated in approximately 225 newspapers nationwide. He has written twelve best-selling parenting books, nine of which are published in 16 different countries. He is also one of America's busiest and most popular speakers and most certainly the busiest and most popular in his field.

Sounds to me like his real skill is selling bread…

Mr. Rosemond has stated that he doesn’t believe a diagnosis of ADD or ADHD is valid for most children diagnosed that way. He seems to believe that effective parenting rather than medication and well-researched behavior modification are the solutions for those children diagnosed with ADD or ADHD. I believe that Mr. Rosemond’s ‘Traditional Parenting’ approach has the best chance of succeeding with ‘traditional children’, and unfortunately, in my world, most children are not traditional. I would like Mr. Rosemond to spend some time with my family – just dinner every night would be enough. But, I don’t believe he would ever do that because then his techniques and advice would be put to the test. However, even though Mr. Rosemond would probably not step into my world, there are professionals who have, and the feedback I get from those professionals is that the experience has been a real eye-opener for them.

The VaLEND (Leadership Education in Neurodevelopmental Disabilities) program at the Partnership for People with Disabilities in Richmond, Virginia is an advanced level training and leadership development program which targets health professionals in 14 disciplines. According to their website, their major activities include:

• Implementing and evaluating a 12-credit competency-based curriculum for health professionals and special educators
  
• Evaluating and enhancing the family mentorship experience
  
• Recruiting advanced graduate students and professionals to be VA-LEND trainees and fellows
  
• Coordinating training activities related to childhood neurodevelopmental disabilities with the VCU School of Medicine, and the Virginia Department of Health, Title V Program
  
• Implementing and evaluating interdisciplinary clinics at a local public health center, a community-based human service agency, and a university-based clinic
  

That second bullet point above, which talks about the family mentorship component of the program, is the one that has brought professionals into my family to experience the real world of parenting a child with disabilities. We have been mentors to pediatricians, occupational therapists, physical therapists, special educators, and psychologists. The student in the program spends the school year observing ‘their’ family. They share the good, the bad, and the really bad. But when their school year is finished, these students have a wonderful understanding of life in a special needs family. Unlike Mr. Rosemond, whose website lists no current practical experience, the professionals who share a year with my family and the other mentor families are the ones whose opinions I would value.

I believe I will just tell Mr. Rosemond and my school district that I am not in the market for any bread right now.

Growing Up Easily

Ashley had her first visit to the gynecologist yesterday. Everything went so much better than I thought possible and even could have hoped for. Since Ashley is only 12 years old, and because she gets very anxious whenever she has to go to any doctor’s office, I honestly was not expecting things to go well.
We had been referred to this particular gynecologist by Ashley’s pediatrician. I trust the pediatrician, and really hoped that we would like and trust the gynecologist as much.

The first positive impression was made when I called to make Ashley’s appointment. The lady who answered the phone did not rush me through my account of Ashley’s disabilities. She listened patiently while I expressed concern about this first visit, and shared with her every detail from how nervous Ashley can be just walking into the waiting room to how difficult it is to have blood drawn. She made sure we got the soonest appointment possible, and made many notes about what the rest of the office staff should expect when Ashley arrived. Things were looking good…

I got to the doctor’s office a few minutes before Ashley and Amy so I could fill out the new patient paperwork. The office staff was very welcoming and told me to let them know when Ashley was arriving. As soon as I saw Amy and Ashley enter the office, I let the staff know and within 5 minutes, we were being taken back to the exam room. Unlike staff in some doctor’s offices who stare rudely at Ashley, the many people working in this office treated us just like every other patient. Once in the exam room, the nurse was very calm, and told us we could have Ashley sit on the exam table or remain in her wheelchair. She let me put Ash in one of her favorite new dresses rather than a paper gown, and then she said the doctor would be right in – and she was!!

Waiting is one of the hardest things for Ashley to do. Waiting in a doctor’s exam room is the worst. But, that didn’t happen here. The doctor came in within 5 minutes, and like her nurse, was very quiet and calm and welcoming. She did a quick exam, and patiently stayed to answer any and all questions we had. Ashley was very happy and fairly relaxed the whole time.

I was so impressed with this particular doctor’s practice especially the way they treated Ashley, Amy and me. Often doctors who primarily treat adults with no special needs are uncomfortable around patients with needs as complex as Ashley’s. I saw absolutely no evidence of that with this doctor or the rest of the staff. I would wholeheartedly recommend this practice to anyone, but especially to people with special needs.

Thank you, Dr. Rindos and Commonwealth Physicians for Women!

Dinner on the Veranda

Ashley had a good day at school today UNTIL her vision teacher showed up just 15 minutes before the end of the school day. Ashley may not be able to tell you exactly what time it is, but she knows her daily schedule down to every last minute. School is over at 3:15 pm, and beginning around 2:45 pm, Ashley is winding down, looking for her coat and backpack, and happily anticipating her bus ride home. So, the arrival of the vision teacher at such an odd time (at least in Ashley's mind), was enough to turn a happy time into a time of frustration.

This particular teacher makes a habit of never arriving on any given schedule. It baffles me that someone specifically trained to teach and work with students who are blind does not understand that consistency and scheduling is extremely important. I honestly believe that one of the primary reasons Ashley is still not working well with this particular teacher is the lack of routine. It was no surprise that today this unexpected arrival resulted in a less than positive teaching session with Ashley.

Ashley was still frustrated and a little distressed once she arrived home. Like most people will do from time to time, she took out her frustration on those closest to her. I had to come up with a plan that could turn her looming bad night into a more pleasant evening for her and the rest of the family. I did that by letting her eat dinner on the front porch.

Ashley had not eaten outside since our family vacation last summer. Today was very warm and perfect for dinner outside. As Amy and I helped her walk out to the porch, she had the funniest expression on her face, sort of like she was thinking "What in the world are these two up to now?" She was barefoot and that also confused her. Here I was letting her walk outside without any shoes on. That too had not happened since last summer. We assisted her to the table on the porch and set her dinner in front of her. She smiled, giggled, and began to eat her dinner. She had a very leisurely meal while Amy and I caught up on the events of the day. She was relaxed and the frustration that had been so strong just moments before seemed to have completely evaporated. The plan worked!

I've learned over the years with my children that sometimes distraction is the best approach to solving behavior issues. Sometimes that distraction has to be as 'big' as the frustration is, and dinner on the porch was exactly that tonight. Although the actions of the vision teacher were somewhat similar - a surprise change in routine - they didn't work because the timing was way off. I've also learned that a distraction and the right timing go hand in hand. It's a fine balance and one that I have not always been successful with. Tonight it worked for us but this afternoon it did not work for the vision teacher. If the vision teacher took a little more time to get to know and understand Ashley - if she really listened to Ashley's aide, Amy - If she really thought about what approach would work best for Ashley and her unique disabilities, the teaching session would have gone much more smoothly. Here's hoping that the teacher in this situation was Ashley and the learner was the vision teacher.

Protect Your Children Well

I’ve finally calmed down enough to write about what happened to Jessica about a week and a half ago. For a while now, I have wanted to write something about protecting our family members with disabilities from abuse, but the thoughts just weren’t coming together in my mind. Instead, they were tossing about like the numbered balls in a lotto machine. Little did I know that something would happen to cause all those thoughts to crash together right into my heart.

Jessica spent the first nine years of her life in the foster care system, a system where, unfortunately, physical and sexual abuse is more commonplace than anyone would like to admit. Jessica was born to a very young, non-English speaking mother. At four months of age, Jessica was diagnosed with brain cancer. After the removal of a brain tumor and two years of chemo and radiation, Jessica was left hemiplegic (limited use of the left side of her body – much like a stroke survivor) and significantly mentally retarded. Beginning in infancy, Jessica’s birthmother was overwhelmed with her care and relinquished her to Social Services. Thus began Jessica’s journey through foster care hell.

I adopted Jessica at age nine. She was confined to a wheelchair, was not toilet trained, could not speak such that anyone could understand her, and she was alternately aggressive and seductive (both results of her abuse). The first few years after the adoption were very, very rough. Jessica was not used to living in a strong supportive family, and probably believed it wouldn’t last. So before we could hurt her (in her mind), she decided to hurt us and do everything she could to disrupt the adoption. But, with lots of medical and psychological/psychiatric interventions, I believe she has finally decided to accept our family and perhaps even to love us.

For the last few years, Jessica has lived in a group home for children with mental retardation. The group home is very close to our home, less than 3 miles, and that means we still have daily contact with her. She is, however, moving towards adulthood, and the group home setting is helping to prepare her for life as an adult. For the most part, the group home has been a good environment for her. While there are some things I would change, I admit that my obsessive/compulsive and perfectionist tendencies are not always what are needed. Jessica has maintained the things I worked so hard to teach her and has also learned a lot about getting along with other people. Perhaps because things had been going so well, I was lulled into an almost apathetic attitude. But that all changed the night Jessica was assaulted by another of the group home’s residents.

It was a Sunday night. I had just spoken on the phone to Jessica and all was well. Twenty minutes later, the group home staff called me and said Jessica had been attacked by the home’s newest resident, a young man diagnosed with autism and extreme aggressiveness. The boy had tackled Jessica to the floor, hit her with closed fists, and bitten her twice on the face. I told the staff to take her to the emergency room immediately.

At the emergency room, Jessica was x-rayed, given a tetanus shot, and told to ice, wrap and stay off her left leg for several days. She had to resort to using a wheelchair, and spent most of the rest of her days last week in bed with an icepack on her leg. By Friday, her knee was getting more swollen by the minute, and she had trouble putting any weight on it at all. Another trip to the emergency room ensued, and once again she was x-rayed. No fractures were found, but she was referred to an orthopedic specialist for follow-up.

Through all of this, I tried to stay calm for Jessica, but inside I was seething. The group home staff and management KNEW this boy was aggressive and dangerous. The other parents and I had been complaining for weeks and asking that the boy be moved to a more appropriate, safer setting. But we were ignored – until Jessica got hurt, that is. After calls to Child Protective Services, Licensing, an attorney, and a consultation with the police, the group home did decide to discharge the boy last weekend. Immediately the mood in the house improved. The staff and the residents were calmer and happier. The crying had stopped and the kids who had been like prisoners locked in their bedrooms, were once again in the common areas and enjoying each other’s company.

While it is certainly better now, I just don’t know why this had to happen at all. As parents, we trust the caregivers into whose hands we place our family members. Those caregivers say they understand what is needed, say they have the proper training, say their hearts belong to their charges…yet harm still occurs on a regular basis to our most fragile family members. What can parents do? What should society do? How long will we continue to accept substandard treatment for the people in our society that have little or no voice in their destiny? I am embarrassed that as a parent I let this happen to my daughter. I am embarrassed that as human beings we aren’t doing more.

Shorts, Hot Dogs and Tomatoes

Although it wasn't the first day of Spring yesterday, it felt like it was. The temperature was close to 70 degrees and the sun was shining all day. As soon as I stepped outside, I felt the corners of my mouth start to turn up into a smile and the dreary mood of winter began to lift. The birds seemed to be singing louder than usual, and I felt the urge to till my garden.

My boys wore shorts, and wanted to stay outside most of the day. Chip powerwashed the front porch, and I didn't want to remind him that soon the pollen of Spring would turn our red porch yellow. He seemed to want to help Spring and Summer along as much as I did.

We cooked burgers and hot dogs on the grill last night and added a tomato to our salad. While not as good as our summer garden tomatoes, the flash of red in the salad was a nice contrast to the hearty brown stews of Winter's menu.

Sunny, warm late Winter days are the best....

A Three Toothbrush Night

It was a three toothbrush night last night. That’s a good thing. Considering I’m only in bed for about 6-7 hours each night, if I have to get up more than three times to throw another toothbrush to Ashley, sleep is an elusive guest. What, you ask, does Ashley do with toothbrushes during the night? Well, let me explain.

Ashley likes things that vibrate. Her lack of vision and hearing means she takes in very little environmental stimulation. She doesn’t see the neighbor’s porch light shining through her window. She doesn’t hear the furnace kick in with its unique rumble. She doesn’t hear Chip get up to go to the bathroom in the middle of the night or Corey get up to get a drink of water. Most of us seem to be comforted by the little sights or sounds that pass through our night. But, Ashley doesn’t have that comfort. So, she seeks it with a vibrating, battery operated toothbrush.

She was very young when I first noticed that vibrating things would soothe and comfort her. Her occupational therapist gave her a ‘vibrating snake’, a long, flexible tube-like item, covered in neoprene and with a battery compartment on each end. Ashley loved holding it to her throat. She would immediately calm down whenever she had it. So, I purchased a couple of those ‘snakes’. Unfortunately, they were expensive ($40), used expensive ‘D’ batteries, and didn’t hold up well to kid use. I went in search of a substitute and found the battery operated toothbrushes.

If I can find them on sale, I can get a toothbrush for about $4. It uses one ‘AA’ battery, much cheaper than the ‘D’ batteries. Ashley was just as happy with the toothbrush as she was with the ‘snake’. So, I stocked up on toothbrushes, and for the last 8 years have made sure my supply didn’t dwindle to dangerously low levels.

About the only time Ashley will want the toothbrush is when she is in her room relaxing or when she is in bed for the night. She will roll her head from side to side, her Stevie Wonder move as I call it, with the vibrating toothbrush in her mouth, deeper in her throat than looks comfortable to me. The vibration will help her get to sleep, and if she wakes during the night, will help her get back to sleep. Unfortunately, some nights she wakes up a lot.

When Ashley falls asleep with the toothbrush running, the batteries will eventually die. If she rolls over or knocks it off her bed, when she wakes up, she will not be able to find it. Thus, that’s the reason I have to give her more toothbrushes during the night.

I keep a supply of about 15 toothbrushes in a small basket on my bedroom dresser. If I hear Ashley hitting her bed (her signal to me that she needs a toothbrush), I pull myself out of my warm, very comfortable bed, stumble in the dark to the basket of toothbrushes, grab one, walk down the hall to Ashley’s room, and then gently toss the new toothbrush in her vicinity on the bed. She can find it by feeling the vibration. All is then well – until the next time she wakes up and needs a toothbrush.

That is the reason the quality of my sleep is measured in toothbrushes. The worse nights are 8-10 toothbrush nights. If you do that math, that’s waking up more than once an hour. A good night is 2-3 toothbrushes. Ashley and I basically nap during the night. I don’t believe either of us really sleeps as most people would define sleep.

One of Ashley’s doctor’s described our sleep life as the ‘intern sleep cycle’, meaning doctor interns who are on call a lot and really only grab naps for the several years they are in medical training. Ashley’s doctor said that a person’s body adjusts to the sleep/wake cycle, but that it is not a good thing for the long term. I wonder if that doctor would consider 10 years and counting long term?

Please and Thank You

I’ve always felt it was important for my children to learn how to behave in polite society and to use their manners. To me that means saying “please”, “thank you” and “excuse me”, not interrupting when others are talking, chewing food with their mouths closed, using good table manners, and other such niceties that make one more pleasant to be around. Those rules apply to my children without disabilities and equally to those with disabilities. I want my children to be respectful, polite people, people not defined primarily by their disability. One of the ways I can help ensure that they do not get defined totally by their disability is to make sure they follow the same rules and conventions of society that everyone else does. And in the South, very well-defined mores define that behavior.

I have been surprised at the number of adults who do not expect pleasant behavior from children, especially children with disabilities. When Chip was entering kindergarten, I met with his teacher and explained to her how I felt it was important to say “Yes Maam” and “No Maam” when he was speaking to her. The teacher chuckled and said that would not be happening in her class – it was a “Southern thing” in her words. I pointed out that besides the fact that we do live in the South, I felt it was a “respectful thing” also. My words fell to deaf ears – “Maaming” would not be happening in her classroom.

When Ashley first started learning to sign, besides the basic survival signs (eat, drink, bathroom), I insisted she learn the signs for “please”, “thank you”, and “excuse me”. She is today one of the most polite children I know even though her polite words come in the form of sign language.

Jessica also learned quickly that polite behavior would come with rewards. In her case, the recognition for using that behavior and being noticed as ‘special’ was enough to keep her on the path to those “Southern things” that I find so important. Corey is still struggling but is doing a lot better than when he first joined our family. He’s got the “please” and “thank you” down, but needs to work on the “huh?” when being called from another room.

I strongly believe that my childrens’ manners will help them greatly as they grow into adults. They will receive respect from others because they will be giving that respect. They will be able to eat at a “fancy’ restaurant as easily as at a fast food place. Ashley will be labeled as “that very polite young deafblind girl” instead of just “that young deafblind girl”. I know it is a small distinction. But it is to me a very important distinction.

I Learned My Lesson

Last Friday was a beautiful day – warm though breezy – a spring type of day for the first of March. I had been working from home all day when Amy called and asked if I wanted to take the kids and go to the SPCA with her. She wanted a kitten!! Kittens, puppies and babies are the source of much delight in my house, so I knew the kids would love to go. The only catch was that Chip was the last one to get out of school and if we were going to make it to the SPCA before they closed, I would have to pick him up before school ended for the day. I decided it would be a fun treat for him, and so I headed to the school.

Once at school, I went to the attendance office and said I needed to pick Chip up early. On the form I had to fill out, I checked OTHER as the reason, and no one asked me what that meant. A call was placed to Chip’s teacher and Chip was told to meet me in front of the office. As I started walking from the attendance office back to the car, I realized I probably had just scared Chip to death.

I’ve never picked Chip up early from school without him knowing about it in the morning. He also knew that Ashley had been having several seizures each day, seizures which previously had been controlled by medication. The sick feeling in my gut told me that Chip was going to think something was terribly wrong with Ashley, and that was why I was picking him up. And that is exactly what happened.

As Chip approached the car, I could see the concern written all over his face. I smiled and waved, and he later told me that he knew then that everything was ok. He said he didn’t think I would be smiling if Ashley was hurt, sick or in danger. But, boy, did I feel bad for putting him through those moments of worry.

I’ve learned my lesson. If I ever do something like that again, I will have the office staff relay to Chip that all is well at the same time they tell him I am there to pick him up early.

Staring Contest

I discovered a British disability rights website (sponsored suprisingly by the BBC television network) that had a ton of funny stuff on it. I especially liked their Top 10 lists. So, for anyone of you who have been stared out or had family members stared at, here is one of my favorite Top 10s:

Ten Responses to being Stared At

1. Stare back until they look away or blink, then loudly announce: "I win again! Champion of the staring contests!"

2. Nudge somebody nearby, whisper "Is that person staring at me?" and point surreptitiously. Repeat until target is thoroughly discomforted, Just as YOU usually are when people point and whisper and stare.

3. Say "I know! Isn't is fa-bulous?" and toss your hair, smooth your shirt, or modesly admire your manicure. "I know that people can't help staring at my marvelous wardrobe/hair color/manicure. It's a good thing I don't mind attention."

4. Flutter your eyelashes, giggle, and say "Do you fancy me, then?" in a carrying voice. "You're staring so much, I think you must be in LOVE. Tee hee."

5. "Keep staring. I might do a trick."

6. (Especially after number 5 above) Fake a seizure, sudden pain, or death rattle, followed by yelling "Ha! Fooled you!"

7. Ask them if they've found Jesus in their lives.

8. Make disgusting faces until they look away. If called on your rudeness, apologize and explain that your doctor has prescribed these therapeutic face exercises, and offer to demonstrate.

9. Attempt to engage them in friendly, normal conversation about the weather. If this doesn't work, start to drool mid-sentence.

10. Ask them if they can spare some change.