Thursday, January 31, 2008

Thankful Thursday


Is it Thursday already? What a hectic week - two IEP meetings, one good and one not so good, doctor appointments, an 80 hour work week in just 4 days...Let's see if I can come up with 10 things for which I am thankful.

Today, I am thankful...

  • That Ashley is feeling good, and has had a great week at school

  • That her IEP meeting went well yesterday. I've said it before, but I feel the need to say it again, her teacher this year is wonderful! She started the meeting off by having everyone list what they felt Ashley's strengths are. Quite a change from most IEP meetings where all I hear are negative things.

  • That although my little buddy, Brooke, started the week off not doing well, she is now feeling better and her seizures are reduced.

  • That Valentine's Day candy is already on the store shelves

  • That it appears we will all be getting an economic incentive rebate from the government. This is one of those times that having lots of kids is a good thing! $600 per individual, and $300 per child = $1800!!!! Maybe I can finally get a new washer and dryer.

  • For the wonderful corn/pineapple salsa recipe I tried this week. Yummm! (see below)

  • For a trip to the library this weekend. I love getting new books to read.

  • That this coming Monday is Ashley's appointment at the UVA Kluge Epilepsy Center. I'm so looking forward to getting a second opinion about her seizure and brain tumor issues. I'm so not looking forward to dealing with our current neurologist when he finds out we went to UVA.

  • That my fat cat is so adept at catching crickets that happen to wander into our house. She is earning that expensive food the vet said she needs to eat!

  • For those sticky lint roller contraptions - an absolute must if one has cats



Broiled Chicken with Corn-Pineapple Salsa

Cook Time: 10 Minutes Ready In: 20 Minutes
Yields: 6 servings

Pineapple, cilantro, bell and jalapeno peppers, and corn add unbelievable flavor to this broiled chicken.

INGREDIENTS:
6 medium skinless, boneless (marinated in Teriyaki marinade is even better)
chicken breast halves
1 (15.25 ounce) can Whole Kernel Golden Sweet Corn, drained
1 (8 ounce) can Crushed Pineapple In Its Own Juice, drained
1/2 cup green and/or red sweet pepper, chopped
1/4 cup fresh cilantro, chopped
1 jalapeno pepper, seeded and finely chopped (optional)

DIRECTIONS:
1. Rinse chicken; pat dry. Season with pepper. Place on unheated rack of broiler pan. Broil 4 inches from heat 10 to 12 minutes or until no pink remains; turn once.
2. Meanwhile, stir together corn, pineapple, sweet pepper, cilantro and jalapeno in medium bowl. Serve with chicken. Garnish with additional cilantro and jalapeno peppers, if desired.

Wednesday, January 30, 2008

Request Denied


Last October, I wrote about a mother who wanted to have a hysterectomy performed on her 15 year old daughter who has cerebral palsy. Katie Thorpe's mother said "She's not going to get married and she's not going to have children...Katie is not going to become a normal adult." Mrs. Thorpe also said, "All we are trying to do is keep and improve Katie's quality of life. By stopping menstruation it's allowing Katie to enjoy life to the full without the problems of menstruation...the mood swings, the tears, the stomach cramps, the pain, the discomfort, the embarrassment." Fortunately, doctors sought legal counsel before doing the surgery, and the verdict is now in - the request for surgery has been denied. Maybe that's why Katie seems so happy in the photo above.

Updates to Katie's story are reported here, here, and here.

Tuesday, January 29, 2008

Getting To Know Us


WE...

• Listen for the cry of the baby we just gave birth to, only to hear a small moan

• Wonder why our baby is not rolling over, lifting his head, watching us move, or many of the other developmental milestones

• Know how an NG feeding tube and a heart monitor work

• Don’t understand why our baby feels so floppy

• Just want to see one smile from our toddler, one glance into our eyes that seems meaningful

• Have nebulizers, feeding pumps, syringes, tubing and extra peg tubes in our child’s closet, the car, and at school

• Keep an envelope on the back of the front door that lists all our child’s diagnoses, all the meds, and contact information for all the specialists who follow our child. This envelope is given to the rescue squad each time they come to our house to take our child to the emergency room. Eventually, we don’t need the envelope because all the squad members know our child. They even know where our child’s bedroom is in the house because they have been there so often.

• Greet the emergency room staff by their first name

• Know which schools in our school district offer which programs, and we know which programs to avoid because we have heard from other parents.

• Know and have had conversations with the school’s director of special ed, the compliance officer, and the superintendent. The secretaries for all those people have our names and phone numbers on speed dial

• Have a list of attorney's names and phone numbers pinned to our bulletin boards at home

• Often don’t attend church because we can’t find one that welcomes our child

• Avoid taking our child on errands because we can’t take the stares and rude comments

• Say we get used to the stares and rude comments and that they don’t really bother us. We are lying.

• Know the difference between occupational therapy and physical therapy, and we know that our child can have speech therapy even if he or she doesn’t speak.

• Know where to find the toys best suited for our child’s disabilities, but usually we can’t afford them. Instead, we know how to adapt regular toys and books.

• Have car seats and helmets for our teenagers.

• Probably haven’t slept through an entire night since our child was born – even if our child is 19 years old.

• Know the best way to remove feces from walls and clothes.

• Know how to strategically dress our sons so masturbation will be more difficult to accomplish

• Never leave the house without our child’s comfort item, and at least two backups to that comfort item.

• Long for close friendships, but usually have none. If we do have a close friend, it is usually another parent with a severely disabled child.

• Have alarms on bedroom doors so we know if our child starts to roam at night.

• Lock up medicines, foods, and sometimes even sharp objects.

• Know the names of IV antibiotics and at least 7 seizure medicines

• Know all the rules of the Family Medical Leave Act

• Fear what will happen when our child can no longer see the pediatrician and we have to find another doctor

• Have a freezer full of macaroni and cheese, and a refrigerator full of chocolate pudding.

• Know which hospitals have the best food in their cafeteria

• Know the type of doctor who makes prosthetic eyes

• Are deeply in debt because of all the stuff insurance won’t pay for, like home modifications, adapted devices, special clothes, lawyer bills, and the list goes on and on

• Have nightmares about what will happen to our child should something happen to us, the parents

• Love our children more than life itself

WE...

Are the parents of a child with a significant disability, and this list is only the beginning….

Please feel free to add to it.

Sunday, January 27, 2008

Still Searching


Last week I spoke to the person in charge of disability issues for my Catholic diocese. I've written before about trying to find a church that was welcoming to my family, and about my failure to find that. So, I was encouraged when my oldest daughter's behavior counselor gave me the name and phone number for the person at the diocese.

I spoke with Nita, a mother herself of an adult son with significant disabilities. I was encouraged, sure that she would understand the struggles I had been through. And while I believe she does understand to a degree, the phone call didn't leave me with a strong belief that my struggles would end.

Nita suggested two churches near me, and she was very anxious to list all the positive points about each. But when I explained Ashley's disabilities, her need for a sign language interpreter who could do tactile sign, and that I wanted Ashley to receive religious instruction, I heard the pause in her voice.

I've found that many churches believe they are accessible by the mere fact of having ramps and an interpreter at the front of the church during services. Those accomodations are indeed commendable, but they are not enough. My daughter cannot see an interpreter at the front of the church. And, I don't believe she needs to just sit in church during the service. I want her to have religious instruction. I want her to find the peace and comfort I have found in my religion. And, after attending Chancellor's funeral last week, I was even more convinced that she needs to find a faith that will sustain her during life's most difficult times. I want Ashley to understand that when I die, I will be waiting in Heaven for her. I don't want her to just think I deserted her. At this point in time, she would not understand, and that breaks my heart.

Surely a church must exist that has figured out how to instruct people with intellectual disabilities. I want to believe that there is a church that will welcome my family as well as provide religious instruction for all my children. Am I expecting too much?

Friday, January 25, 2008

Bob's House

Love.Love.Love this commercial that is scheduled to air during the Superbowl this year:

Finding Bob's House

Helping, Not Helpless


Yesterday, residents of The Virginia Home presented a check for $11,315 to the Families of the Wounded Fund.

Last December, 40 people who live at the Virginia Home swam laps to raise money for the fund that helps families of troops wounded in combat operations in Iraq and Afghanistan.

To understand what makes this event unique, read this article from the Richmond Times Dispatch newspaper:

No Limits On Generosity

And, for additional information about the Virginia Home, here is companion article to the one listed above:

More About The Virginia Home

Thursday, January 24, 2008

Thankful Thursday


Today I am thankful....

  • That God gives you rainbows when you need them the most

  • For the chance to see two old friends this week, Sharon and Heike

  • That high school mid-term exam week is over tomorrow. My sons will have an entire weekend with no homework!

  • That my phone plan allows me to make unlimited long distance calls at no extra cost

  • That Valentine's Day is right around the corner. Chocolate...yummmmm!

  • For snow showers - beautiful but not a driving hazard

  • For toothpaste that doesn't come in a tube, but rather a little bottle. That way, there are no comments made about squeezing the tube in the middle.




  • For cardinals, the Virginia state bird, and a beautiful flash of red streaking through the trees on a cold winter day

  • For really hot showers when I first wake up on a cold morning

  • For oatmeal with fresh strawberries or fresh blueberries

Wednesday, January 23, 2008

A+ Kid


My oldest son, Chip, is the most amazing big brother there ever was, especially to his sister, Ashley. For example, yesterday I wanted to attend Chancellor’s funeral but it meant I would not be at home when it was time to administer Ashley’s nighttime medications. I had someone staying with Ashley, but it was someone who was not familiar with Ashley’s meds or using her G-tube. Because Chip has done meds through the G-tube previously, I asked him if he would do it again. He immediately said yes. He got the right mixtures of medications, some crushed and mixed with water, some liquid, and when it was time for Ashley to go to bed, he laid her down, hooked up to her G-tube, and squirted all the meds into her stomach. And that is just one small example of how he loves and takes care of his sister.

From the time we adopted Ashley, Chip has been her protector. When she is sick or having a seizure, I know he is close by monitoring what is happening. He will go into her room at night after she has gone to sleep and pull her blanket up around her. Every cold morning, he helps her zip up her jacket, a task impossible for me to do because of my painful arthritis. He tells her she has to wear her hat at least until she gets on the school bus, and when in our car, he always makes sure she is buckled up.

Chip is also Ashley’s buddy, always pushing her to try new things and hone all her abilities. He is the reason she loves riding roller coasters at the amusement parks. He will sit for ours and play video games while she watches, her face just inches from the TV. He makes sure to TIVO all the TV shows she loves to watch, and on every trip to the Goodwill Store, he buys her used video tapes he thinks she may enjoy. He loves to play race car with her while she is in her wheel chair, and her giggles can be heard for blocks as he tilts and turns her, scaring me to death in the process.

Chip is the one to remind me that not every thing in life has to be a learning experience. When I was working with Ash on her A-B-Cs using her alphabet spaghettios at lunch one day, he reminded me that eating should be a pleasurable experience not a school task. He has spent many nights sleeping in hospital waiting rooms with me as we wait for a report on Ashley’s health, and he was the one to ride in the ambulance with her the Christmas of 1998 when we almost lost her to a status seizure. And lest you are starting to think he is perfect, the science fair experiment should persuade you otherwise. When Chip was in the second grade, he wanted to use his sister for the science fair. He wanted to feed her different colored drinks by mouth to see what color they would turn when they showed up in her feeding tube. I had to gently remind him that not every child, and especially not every parent, would share his fascination with his sister’s feeding tube. He went on to do an experiment involving putting a hamburger in a jar and seeing how long it would take to rot.

I remember when the nurses first wheeled Chip to me the morning after he was born. He was in one of those little clear crib things that hospitals use, and on the head of the crib was a card with a big A+ one it. I was sure it meant he was the best baby in the nursery. The nurses informed me that it was really his blood type, but I know otherwise. He WAS the best baby, and he still IS the best son and big brother there ever was!

Art From The Heart


Driving to the church for Chancellor's funeral yesterday afternoon, The weather was gray and cloudy and a cold rain was falling. That weather fit the mood of everyone entering the church. However, when we came out of church after the service, the sky was clearing a bit to the West. Drawing upon the Teutonic wisdom of my grandmother, if enough blue sky was showing to make a pair of cat's pajamas, the weather would be clearing. She was right yesterday. However, even more amazing than my grandmother's weather prediction skills was the stunning rainbow making a perfect arch over the church.

Seems the Chan-Man has already found God's stash of felt tip markers!

Saturday, January 19, 2008

Chan-Man


Every year, usually in the summer, the Virginia statewide support group for families who have children with deafblindness comes together for a family retreat. It was during one of those retreats that I first met Chancellor.

Only two years old, Chancellor was a dervish of unbridled energy wrapped in a luminous smile. I remember thinking how good it was that he had young, lively parents who would be capable of keeping up with him. Chancellor never let his Usher's Syndrome slow him down. Usher's Syndrome is an inherited condition that results in deafness and a gradual loss of vision. But I knew from the first time I laid eyes on Chancellor, or Chan-Man as he was called, that even the Usher's would not keep him from experiencing all life had to offer.

As I watched Chancellor grow through the years, he gave me hope. As a new parent of a child with deafblindness, I was often overwhelmed with the impact of Ashley's disability. But Chancellor showed me that there really were no limits on anyone's life, even for a child with deafblindness. Each year at our family retreats, he seemed to grow more vibrant, more alive. I saw him advance from using an adaptive cane device to a regular white cane. I saw him adapt to his cochlear implant, and I saw his sign language skills improve drastically. I saw him grow from a small child who had feeding problems to a young boy who anticipated meal times. He loved school and each year he tackled harder and harder challenges. Little did we all know that his most difficult challenge was yet to come.

About a year ago, Chancellor started having seizures - significant seizures that exhausted him and took their toll on the skills he had fought so hard to master. His parents sought out the best doctors, the doctors who would help them help the Chan-Man. That search took them to a speciality hospital in Pennsylvania. The doctors at that speciality hospital recommended a radical surgical approach. Chancellor's parents had very little choice - his seizures were becoming much worse. So the decision was made. Chancellor would have surgery to separate the two hemispheres of his brain.

The many months after the surgery were filled with helping Chancellor re-learn everything - walking, talking, eating - everything. It was the most difficult challenge of his life, but he did it. By early November of 2007, Chancellor had regained all the skills he would need to go home, and he was not having seizures. He was scheduled to go home in time for Thanksgiving. But then the unimaginable happened.

Just two weeks before his trip home, two weeks before Thanksgiving, Chancellor started to regress again. He was losing skills, and didn't seem himself. Doctors discovered that a granuloma, a type of tumor, had grown on his brain stem. There were no options available for removing it. Chancellor was sent home, but certainly not to the homecoming that everyone had dreamed of for the past year.

On Friday, January 18th, the Chan-Man left his cochlear implant, his white cane, and all his pain behind. The angels escorted him to Heaven. He was only 10 years old. As his obituary states, "Chancellor held a flame that lit the lives of everyone he touched. Though brief in years, he had a greater impact on this world than most might hope to achieve in a full lifetime."

We're going to miss you, Chan-Man. We will never forget you, and we will always love you.

Chancellor's Obituary

Friday, January 18, 2008

Closure For Joseph


Two years ago, at the annual retreat for the Virginia deafblind family support group, everyone in attendance fell in love with a child named Joseph. This retreat was the first one Joseph and his family had attended, and our retreat was made so much richer by their presence. Joseph and his family made history this week in Virginia, and their story needs to be shared.

Joseph is now 4 and needs care and monitoring 24 hours a day. He has cerebral palsy, has no coordinated use of his limbs and can't speak. He has major neurological deficits. This week, his parents came to Virginia’s capitol city to finally realize a sort of closure to the events which set in motion Joseph’s disabilities. In the words of Lee Ann, Joseph’s mother:

“I finally have some sense of closure to what happened to Joseph when he was born.

We went to Richmond this past Friday to listen to an informal hearing with the Department of Health Professions in regards to Dr. Evelyn Anna Ruelaz and allegations that she violated laws governing the practice of medicine associated with my pregnancy with Joseph and my labor and his delivery.

The special committee put together questioned Dr. Ruelaz's actions that day, and we had to relive every minute of that day he was born. I was given the opportunity to read a statement I prepared about the event of that day per my recollection, and then told them all the things Joseph is not able to do now and how Dr. Ruelaz's actions (or lack thereof) have affected our lives forever.“


This article in the Richmond Times Dispatch goes into more detail about the doctor’s actions at the time of Joseph’s birth.

Joseph’s mother goes on to say:

“After a brief 30 minute closed door session, the committee found Dr. Ruelaz guilty of all allegations and issued a reprimand on her record. This will all be public knowledge and the final order will be available to anyone who would like to know about it. I do believe this sets a precedent [in Virginia] as this is the first doctor that has been reprimanded in one of these cases.

Dr. Ruelaz admitted at least 3 times during the hearing that she should have delivered Joseph at least 3 hours earlier, and once she even admitted she should have delivered him at least a week earlier.

Dr. Ruelaz was found guilty of:

  • failing to recognize sings of pre-eclampsia and failure to take appropriate action to properly assess the condition of the fetus,

  • failing to properly assess fetal monitoring strips and the condition of the fetus,

  • inappropriately increasing Pitocin despite non-reassuring fetal heart tracing,

  • failing to perform a timely amniotomy and failing to timely deliver the fetus despite recurrent late decelerations and thick meconium."



While nothing can now undo the challenges little Joseph will face for the rest of his life, at least SOMETHING was done. I’m proud of Joseph’s family for pursuing this, even though I am sure it was very difficult to relive in detail the horrors of the day Joseph was born. And I’m proud of the Virginia Department of Health Professions for not trying to sweep this under the carpet.

Let this case serve as a warning to everyone to research the past of any doctor you are considering or are currently seeing, and when something goes wrong that you feel could have been prevented, speak up and speak loudly.

Thursday, January 17, 2008

Thankful Thursday


This has been a very difficult week, and I am going to forego my usual Thankful Thursday post. I am still very thankful for all the beautiful, wonderful and special things in my life. But, given some negative and heartbreaking things that have occurred in my life this week - one I blogged about and several I have not yet been able to share - I feel if I list ten things for which I am thankful, the list may seemed forced and false.

This week, I ask that each of you find the things in your life for which you are thankful. Tell the special people in your life how important they are to you, and how much you love them. Take nothing for granted, and enjoy every moment to its fullest. And especially, treasure your children for the gifts they truly are.

Wednesday, January 16, 2008

Wrong As Wrong Can Be


I have sometimes wondered why parents continue to place their children with disabilities in facilities. I’ll use the word ‘facilities’ because it’s slightly less offensive to me than institution. I believed with the many horrors of institutionlization being revealed that no parent would choose such a placement for their child. But, I was being na├»ve and had incorrectly assumed that parents had made a conscious choice for a facility placement. What I now know is that sometimes parents are forced into such a decision. I have recently been informed of several examples, and one of those is listed below.

One of my friends is a single mom of a young daughter who is medically fragile. The daughter didn’t start life quite as fragile as she is now, but her medical conditions have deteriorated, and she now needs full-time nursing care. The Mom was trained by hospital personnel to deal with her daughter’s medical issues and equipment. And, the Virginia Medicaid Waiver program, specifically the Technology Waiver, is supposed to provide nursing care for the child when Mom is at work and when the child attends school. Without either the nurse or Mom, the child cannot attend school. Sounds pretty straightforward, doesn’t it? The Mom, with the assistance of the agency that administers the Technology Waiver, arranges for a nurse and a backup nurse, and the child’s life moves forward. The problem is finding a nurse and a backup.

The Virginia Medicaid Waiver program has set rates that it will pay a nurse. That rate is significantly lower than the hourly rate a nurse can get in private duty nursing. It soon becomes obvious that the pool of nurses willing to work for the reduced rate becomes quite small. And, in my more cynical moments, it could also mean that the quality of Medicaid nursing services are less than those of a private duty nurse. None of that matters however. The Mom is locked in to using a Medicaid nurse. Even if she could find someone else, Medicaid would not pay.

Those are all very real problems, but the most significant problem is that nurses get sick themselves. This child’s nurse is currently sick. There is no backup nurse because the pool is so small. The only solution is for Mom to stay home from work and accompany her daughter to school. Mom doesn’t get paid when she doesn’t go to work. It doesn’t take too many of these nurse absences to have a profound financial affect on Mom – a Mom already stretched to her financial limits because of the care her daughter needs. This child’s nurse has been out four days in the last week – a mortgage payment, as Mom describes the impact. Mom doesn’t know when the nurse will be back, and when this situation will be repeated. Her daughter has only been home from the hospital for three months, and already nursing services are crippling the family financially.

Mom has only two options – potentially lose her home and her security because of the financial impact, or place her daughter in a facility which provides round-the-clock nursing care. The current state of our Medicaid system has left this mom with two equally reprehensible choices. This is why children and other family members are still being placed in facilities in this state and around the country. The move to community-based supports is failing families like this, and will continue unless changes are made.

Unfortunately, change will not come quick enough for this particular family. Mom has said she will not, under any circumstances, place her daughter in a facility. I support her in that and will do everything in my power to keep that from happening also. The warning which should be very clear in this post is that such a situation is often only a few steps away for any family with a family member who has a disability. Our current Medicaid system is making a travesty of the move to community supports.

When that move to community if found to be failing, will someone – anyone – look to Medicaid for answers? They will if you and I let our voices and our stories be heard.

Tuesday, January 15, 2008

Sanctuary


I believe we all need an oasis, a place that is ours and ours alone, a place to escape, to rest, to recharge, and to consider the day’s challenges and accomplishments. That place for me is my bedroom.

My day starts early, 4:30 a.m. to be exact, and it is filled with punctuation marks. There are many !!!!!, and some ????? My kids bring me lots of xoxoxo’s, and my school district fills me with X*$*%*^&. By the time the evening rolls around, I need some ----- and some ~~~~~~~. I find those calming, even moments in my bedroom where I am surrounded by so many of the things that have deep meaning to me.

On my wall hang pictures of my mother when she was a young woman, a beauty with her blonde wavy hair, her dimpled chin, and her serene look. Next to that hangs two pictures of my oldest son, one at 3 months of age – the first really good picture taken of him – and one at 6 years old, his grandmother’s dimpled chin passed to him. And, there is a picture of my sweet Ashley, just two years old, on her knees with her hands folded in prayer.

My two dressers are the dressers my parents bought used for me when I was 16 years old. They are solid and imposing, real furniture in a time of pressboard and MDF. I have whitewashed them and replaced the drawer pulls with ceramic knobs hand-painted with multicolored wild flowers. The periwinkle blue on the knob is a perfect match for the periwinkle paint on the walls of my bedroom. The woodwork in the room is snowy white, and the large picture window is draped in white and pale yellow scarves. I love that window. From my bed I can see the huge maple climbing tree in the front yard or the stars dotting the sky on a clear night.

In front of the window is a small drop leaf table, again a treasure from my mother. Flanking the table are two old dining chairs she owned, their backs featuring an elaborately carved rose. I have whitewashed them also and replaced the seat covers with a cheery blue and yellow plaid, the same fabric I used on the bulletin board that my oldest son helped me make. Next to my bed is a small table whose back resembles a picket fence, and whose front supports are bird houses. That small table holds my stack of library books, my favorite magazines, my IPod and alarm clock, and my scent diffuser – a glass bottle filled with a scent called “Ocean” to remind me of my favorite place in the entire world.

Then there is my bed – one of the only real splurges for myself. About two years ago, I replaced the mattress that I had owned for 20 years with a super soft, pillow top, high-end mattress. I figured that even though I didn’t ever get to sleep enough, I would at least enjoy the times that I did sleep! Combine that wonderful mattress with silky 600 thread count sheets, a lovely Pine Cone Hill quilt that my son won for me in an essay contest last year (he wrote about me ‘living beautifully’!), and a light down comforter that my brother gave me for Christmas one year, and I am in heaven.

Yes, my bedroom is my sanctuary. It’s where ideas for this blog are born, where strategy for school battles and insurance battles is planned, where my mind takes flight to the future and reminisces about the past. It’s sometimes the place where a sick or scared child will snuggle in bed with me, and it’s a place where my dreams can seem achievable.

It’s my special place in my very special life. Where is your special place?

Monday, January 14, 2008

Just Doing It


MMC from the blog Free Falling made the comment to me last week about parenting multiple children with disabilities, “Quite frankly, I don't know how you do it. Although I do think I know your likely response. You just do it. Because you don't have any choice.

She’s right – as parents, especially parents of children with disabilities, we have no choice. We take care of our children – period – no matter what the cost to ourselves. My choice came when I decided to adopt children with significant disabilities. At that point in time, I accepted the fact that my life was no longer my own – it belonged to my children. There are many rewards to parenting children with disabilities, rewards I am so thankful that I have known. But, there are also some very difficult times.

While most days present challenges, the absolute worst times for me happen when I get sick. As some of you know, I have Lupus and Rheumatoid Arthritis. So when I get sick, I don’t get just a little bit sick. I get rip roaring, feel like you want to die sick. It’s the kind of sick that would send most people to their beds, the kind of sick where someone takes you to the doctor because you feel you shouldn’t drive, the kind of sick where friends bring you soup because you are unable to even cook for yourself, the kind of sick that makes you wonder if you really will recover. The problem for me is even when I am that sick, I must continue with my responsibilities. I don’t have the luxury of going to bed or not driving or not cooking. My children must still eat and must still make their doctor and therapy appointments. While I usually can find one or two people to help with the children for some portion of the day, the evenings, nights and weekends are almost exclusively mine. And like MMC said, I just do it.

I do my best to not get sick in the first place. The folks I work with call me a germaphobe. I keep a bottle of hand sanitizer on my desk at all times, and if I am away from my desk, I have a little tube of the same stuff with me. If anyone in my office has the sniffles, I close my office door and have them send messages under the door to me. I take vitamins every day, and am religious about following my other medication schedules. I try to get adequate rest, but that’s kind of a joke in my family. I eat right, and get a little bit of exercise (my arthritis prevents too much exercise). Even with all that prevention, I do still get sick sometimes. But I just have to keep going.

No matter how sick I feel, or even if I hold a nice little pity party for myself, I would be sick every day of my life if it meant my children never had to be sick. I said earlier that the absolute worst times for me happen when I get sick. I lied – the absolute worst times are when my children get sick.

Friday, January 11, 2008

R.I.P. Brent Martin


Brent Martin was 23 years old when his body was found next to a parked car. Mr. Martin had been beaten to death by three men – one 21 years old, one 17 years old, and one 16 years old. On the surface this seems like just another story of violence reported by a newspaper in any large city. But there is a difference in this story.

Brent was a person with an intellectual disability. He was out for a walk in the community. He was spotted by the three young men, and the 17 year old bet the 16 year old money that he couldn't take Brent down with a single punch. Both boys were trained as boxers, and their victim was repeatedly punched, kicked, stomped on and head butted. The 21 year old and the 16 year old have already admitted to Brent’s murder, and the trial for the 17 year old began this week and that 17 year old is quoted as saying “I am not going down for a muppet."

Although the autopsy showed that Brent never lifted a finger or fought back against his assailants, it did reveal that he died from a massive head injury and had suffered at least 18 separate blows to the head and neck.

This makes me sick to my stomach, even more so because this crime happened last August. Why didn’t we hear about it? Why wasn’t it reported on the news programs like the death of Matthew Shephard, the young man who was killed because he was gay? Did Brent’s disability make him so unimportant that his brutal death did not even deserve a mention? Prejudice against disability is every bit as unacceptable as racism, sexism and homophobia. Ignoring Brent’s death is even more unacceptable.

Click here for a media story on the trial.

Thursday, January 10, 2008

Thankful Thursday


Today I am thankful...

  • that people are not afraid to share and talk about the atrocities of institutionalization (see post below)

  • that Mother Nature gave us Virginians a special gift of balmy, spring-like weather the last few days. Next week, it is back to scarves, mittens, and heavy jackets.

  • that Amy, Ashley's aide, didn't really break the Internet. It was just my router that conked out :)

  • for the young woman who approached me in WalMart last weekend

  • that even though I can no longer find Ben and Jerry's Chubby Hubby ice cream, I can find Edy's Peanut Butter Cup

  • for the new medication my rheumatologist prescribed for my rheumatoid arthritis. One pill at night and I wake up with much less pain and stiffness.

  • for the beautiful paintings that Amy gave Jessica for her freshly painted bedroom wall

  • that Brooke is recovering from her yucky illness

  • that the TVs in my house are ready for the switch to DTV

  • for people who smile a lot

When The Moon Come Up

I blogged previously about the human atrocities chronicled in the report "Christmas In Purgatory." Casdok at the Mother of Shrek blog shared this video on that same subject. It was authored by disability advocate Norm Kunc, and I believe needs widespread distribution.

Wednesday, January 9, 2008

Love This Mom!!


Read about the self-proclaimed meanest mom in the world

Brother, Can You Spare The Time?


One of my greatest worries as a parent of multiple children is whether I spend enough quality time and give enough attention to each of them. As a parent of children with disabilities, this worry is greater than average, I believe.

Ashley is my child that needs the most hands-on assistance. She cannot be left alone in the bath or shower. Feeding therapy requires my presence at each meal of the day. Many hours are spent at home trying to fill in what is lacking in her school program. And, I am always working with her with an eye on her future – what skills will she need to live as independently as possible when I am no longer around to care for her?

My other children do not require that intense level of assistance, but I do feel like they need their Mom just as much as Ashley needs me. I wonder if I am filling that need for them?

Jessica and I chat for a while every night during the week, and we have lots more time spent at least in the same room, doing the same activities sometimes on the weekends. . Corey is a bit of a loner, and will spend many hours in his room alone. I’m working on pulling him into the family room more often, but it is slow going. He does run errands with Chip and me on the weekends – giving me time with just the boys in the family.
Corey and Jessica go to bed earlier than Chip each night, and the time when they and Ashley are all tucked in bed is my time to spend with Chip. That’s when we watch movies that would be inappropriate for his siblings, or we chat about things that are important to him and him alone, not just chats about our family unit. He seems to really enjoy that time we spend together each evening, but I still wonder if it is enough.

I’ve never seen even the slightest annoyance on any of my children’s faces when my time is more dedicated to one than the other. I would like to think that all my children are learning patience and compassion from each other, especially because their lives are fairly different than the lives of many of their friends. One thing I have insisted upon for my family, and I strongly believe this has made a huge difference in my children’s lives, is that we all sit down to dinner together at least 5 nights a week. Actually, we usually have dinner together 7 nights a week because my children do seem to enjoy being home. Maybe that is the indicator that things are ok, and that I shouldn’t worry so much.

Tuesday, January 8, 2008

Wishes


When Ashley was 9 years old, she was granted a wish by the Make A Wish Foundation. Make A Wish, a national organization with local chapters that has, according to their website, “given hope, strength and joy to children with life-threatening medical conditions since 1980. From [their] humble beginnings with one boy’s wish to be a police officer, [they’ve] evolved into an organization that grants a child’s wish in the United States and its territories every 40 minutes. In the fiscal year 2007, [they] granted the heartfelt wishes of 13,006 children, [their] most ever in a single year”. Ashley’s wish was to meet Mickey Mouse. So off to Disney World in Orlando, Florida we went.

Every detail, and I really mean EVERY DETAIL, was taken care of by the Make A Wish organization. My family had never been on a vacation, so this was a dream for all of us. Ashley had her first airplane ride, and along with that, she rode first class. We stayed at a wonderful resort in the Orlando area called Give Kids The World, also a wish supporting organization. Our family was provided a two bedroom bungalow, fully stocked with snacks and drinks, and much to Ashley’s delight, it also had a Jacuzzi tub. The resort provided all meals for the families and even had an ice cream parlor that was open 24 hours a day. We had banana splits for breakfast one morning – just because we could. There were pools, and game rooms, and libraries, and train stations, and even a carousel. The resort in itself was the best vacation imaginable. But, our family was also provided with tickets to Disney World, Epcot, Animal Kingdom, Universal Studios, and Sea World. Our days were spent exploring all the wonderful theme parks, and we would return home each evening to find a special gift for Ashley. Once it was a Minnie Mouse doll. Another time it was an exquisite painting provided by Disney. Other gifts included videos and DVDs and special candy treats. To say this was the vacation dream of a lifetime seems almost an understatement. I would, however, just add one small facet to the Make A Wish program.

I think we parents of children with disabilities need our very own Make A Wish program. Perhaps we could call it Make A Parent’s Wish Come True. These wishes don’t need to be on the same grand scale that the children’s wishes are, because as most of us parents already know, even tiny little treats in our difficult days can make us very, very happy. I decided to poll a few parents to see what their wishes might be.

Lynnette wants to swim in a giant margarita-filled glass. Angela would like to be able to go shopping one afternoon without any children tagging along. Melissa would like to be able to buy an article of clothing that needed to be dry-cleaned. Robert would like to be able to eat a meal without having to wipe someone else’s mouth, and I would love to be able to soak in the bathtub for more than 5 minutes one day. See – not big wishes, just the little things that would make for a very special day for a parent whose life is normally consumed with loving and caring for a child or children with disabilities.

What do you think? What wish would you like granted?

Monday, January 7, 2008

Blowing Kisses



Fellow blogger, Esbee from Life In Forsyth was writing about an upcoming concert, and went to the artist's MySpace page to have a listen. Please go hear "The Man Who Blew Kisses", the fourth song on the player. I agree with Esbee that it's absolutely lovely, and reminds me of my Jessica, also a kiss-blower.

The Man Who Blew Kisses

The man who blew kisses stood out in the crowd
He wasn't so tall & he wasn't loud
I couldn't tell you how he was dressed
But of everyone there I remember him best

The man who blew kisses was simple & free
He never considered how people might see him
He walked on the water & swam through the air
No trepidation & without a care

The man who blew kisses lives in a home
He isn't allowed to go out on his own
Wherever they take him he's happy to go
He loves everybody & lets them all know

The man who blew kisses, blew them at me
It tickled my heart & it buckled my knee
It made my voice crack & it righted all wrongs
I blew kisses back at the end of the songs

The man who blew kisses in front of the stage
Knew nothing of jealousy, nothing of rage
Nothing of prejudice, nothing of shame
He'd never been broken, never been tamed

The man who blew kisses, he misses some things
But he was catching my drift, he had air in his wings
His head was a' rocking, he was clapping his hands
He was stomping his feet, he was doing a dance

The man who blew kisses eats tulips for lunch
And probably rainbows but that's just a hunch
Sunshine & pixie dust mixed in his punch
Daisies for breakfast he eats by the bunch

The man who blew kisses will blow them at you
He blows them at anyone, no matter who
And I thought to myself in the middle of all this
That the song I was singing was but a kiss

The Good, The Bad, and The Very, Very Ugly



This past weekend, Ashley and I had three very different encounters with teenagers/young adults. The contrast between each encounter was so great that I decided to share them all.

The Good

Ashley and I were waiting to pick up a prescription from the pharmacy at WalMart. Just as we had paid and were leaving, a young woman – I would estimate about 18 years old – lightly touched my arm and said “Your daughter is so beautiful.”

As I mentioned in my recent blog post about staring, Ashley has some facial differences which most people would not label as beautiful. Her left eye is very small and a cloudy green color. She has some of the classic features of a child diagnosed with Fetal Alcohol Syndrome, and her smile is a little crooked and quirky. I have always felt she was beautiful, but for others, finding Ashley’s beauty means getting to know the goodness in her heart. For a stranger to say Ashley is beautiful, and I truly think she meant what she said, warmed my heart and almost brought me to tears.

The Bad

Just a few moments after our encounter with the young woman at the pharmacy counter, Ashley and I were leaving WalMart to return to our van. A teenaged boy, probably about 14 or 15, spotted Ashley and could not take his eyes off her. It was the classic stare that drives me bonkers. He was with his family, and kept staring as they all walked away from us. Although he was headed in one direction, his head kept turning and staring in our direction. There was a look of both fear and disgust in his eyes, and honestly, I just wanted to smack him. But I didn’t have to – since he was not looking where he was walking, he walked right into a large column at the front of the store. Ouch!! If only he were insightful enough to know that his rude staring resulted in his injury.

The Very, Very Ugly

Yesterday was an unusually warm day in Richmond. By late afternoon, the outside temperature had reached 65 degrees and the sun was shining brightly. Ashley and I decided to go for a walk through our neighborhood – Ashley in her wheelchair and me pushing her.

We live in an older, middle-class neighborhood. Many of our neighbors are elderly, and everyone is friendly. As some of the elderly neighbors move into assisted-living homes, younger families are starting to move in. It’s a neighborhood where we feel safe and where we know almost everyone. However, one of the main roads through the subdivision is a cut-through, meaning people who do not live in the neighborhood use the road to avoid stoplights and take shortcuts to their destinations. Police intervention is often needed to slow down speeders but that has really been the extent of problems in the neighborhood.

As Ashley and I walked around the block, a car carrying 4 teenagers – probably in their late teens – approached us. I wasn’t paying much attention to the car other than to make sure Ashley’s wheelchair was far enough off to the side of the road as to not present a hazard. As the car approached, the driver slowed, and the teenager in the front passenger seat threw a partially-filled fast food cup at us. The cup contained a milkshake, and it hit the top part of Ashley’s wheelchair wheel, splattering milk shake over both of us. As soon as the cup was thrown, the driver sped quickly away and turned at the next street.

12-18 inches higher and the cup would have struck Ashley in the side of her head.

I wondered about the mothers of those boys – wondered if they would care that their sons acted in such a manner – wondered where the boys learned to disrespect and harm others.

It was quite an eventful weekend, and I think I will choose to remember the comments of the young woman at the pharmacy counter. Teenagers like her give me hope for the future. Maybe I can just send Clint Eastwood after the others.

Friday, January 4, 2008

Classified Ad


I watched the Celebrity Apprentice show last night. In past Apprentice seasons, Donald Trump was looking for someone to hire into his company. He would take a group of 12 or so people, and hand out what was supposed to be meaningful tasks so that he could judge their suitability for a position in one of his mega-millions corporations. Each week, one of the apprentices, the one whom he deemed to do the worst job on the task, would be sent packing with his signature “You’re fired” statement. However, in Celebrity Apprentice, the B-list celebrities are not jockeying for a job, rather, they are seeing who can raise the most money for a particular charity they have chosen to represent. The person sent packing last night was singled out for not asking for help – help in the form of a donation from a rich contact. Although it is a pretty mind-numbing show and I should have been reading a book instead, that dismissal did make me think about the concept of asking for help.

I’m really bad at asking for help. I’m not sure why but I laid in bed dissecting that thought for a while. Am I afraid of being refused help? Do I worry about burdening someone else with my problems and issues? Have I been programmed as a woman that I should be strong and self-reliant and therefore not need help? Or, am I afraid that I will be seen as weak if I ask for assistance? I never arrived at a conclusion, but I do believe that I have become even more reluctant to ask for help since adopting my children with significant disabilities. And, the thing is, those adoptions have put me in a position to need help more often.

While trying to make sense of all this, I remembered a comment that Brooke’s Mom made on my blog post about isolation. She said “I never want to admit [I feel isolated] because I feel people who don't really understand will "blame" Brooke; I can not live with that thought so I just keep my mouth shut.” Somewhere in that comment is the reason why I am so uncomfortable asking for help. People who don’t understand why I freely chose to adopt children with significant physical, mental and emotional disabilities (which is at least 85% of the people I know), might feel the need to say “I told you so” if I admitted I needed and asked for help. They might blame my children for putting me in a position of needing help. And like Brooke’s Mom, I couldn’t live with that. But, by worrying about what people will think, am I doing a disservice to myself and my children?

If I truly need help, I shouldn’t be afraid to ask for it. At the same time, if my request is refused, I need to learn to accept that gracefully and not take it personally. My life would just be so much easier if people would figure out for themselves the type of help I needed and offered before I could ask! (Please know that the last statement was made sarcastically, and I don’t expect people to read my mind or figure out my needs.) .

I need some help now – help to figure out how to ask for help. Any ideas?

Thursday, January 3, 2008

Thankful Thursday


Today I am thankful…

  • That the sun is shining brightly and the wind is calm. That makes the 19 degree temperature much more bearable.

  • That this is only a three day work week.

  • For rich chocolate brownies, preferably with pecans.

  • For Puffs Plus Tissues with Lotion

  • That I finally have an appointment for Ashley with the University of Virginia Pediatric Epilepsy Clinic (February 4th)

  • That Corey was able to visit with his grandparents and his cousins over the Christmas holiday

  • For liquid hand sanitizer

  • That I don’t need to come up with anymore recipes for using leftover Christmas turkey

  • For the snuggly scarf I received as a Christmas gift. I really, really needed it this morning

  • For my overstuffed, oversized chair – perfect for sharing with a child!

Wednesday, January 2, 2008

Isolating


Being a parent of a child, or children, with a disability can be an isolating experience. Friends who used to invite you out for a movie or dinner no longer call. New friends are few and far between, and those people who do join your circle of acquaintances usually have a child with a disability also. If you are a single parent of a child with a disability, dating is even more difficult. My personal experience has been that once a potential suitor meets my four children, three of whom have disabilities, they become busier at work and have no time to date, or they are unexpectedly called out of town, promising to call when they return. Those calls never come.

At first, you don’t notice the isolation, the infrequent calls, and the lost invitations. But once a parent’s life moves to a more predictable routine, the loss of friends can begin to ache like an overworked muscle. When this happens, some parents become even more involved, perhaps even obsessed, with their child’s disability. Those parents can turn into wonderful advocates who make significant differences for their child and other children with disabilities. But often in the process, they lose the essence of themselves.

I don’t mean to imply that the lives of parents of children with disabilities are bad. I feel my life is very rich and rewarding, and I am happy most of the time. I think we parents find ways to cope with the disappointments and lost social lives, but it doesn’t mean we wouldn’t like some changes. I am first and foremost Ashley’s mom, Chip’s mom, Jessica’s mom, and Corey’s mom. But I do long to just be Deborah sometimes. I would like for people to know more about me than just the ‘parent’ things. I would like for them to find it interesting that I used to be a police officer, that I am now a web designer and computer engineer, that I love to cook and garden, that one place I want to visit before I die is the Grand Canyon, that I love fresh flowers in the winter, and that blue is my favorite color. I would like for someone to look in my eyes and see the intelligence and depth not just the exhaustion. I would like to argue politics and religion with someone who is brilliant and opinionated. I would like to take a class in furniture upholstery, and I would like to get dressed up and go out to dinner at a restaurant that doesn’t have ‘Family’ in its name.

My life, like the lives of most parents of children with disabilities, is dedicated to my children and helping them realize their hopes and dreams. I just want to make sure that I don’t stop hoping and dreaming myself.

Tuesday, January 1, 2008

The Eyes


By now I should be immune to the stares when Ashley and I are out in public. Ashley's left eye is very, very small and is a strange, cloudy green color. When I first adopted her, I would get upset when people stared at her. Sometimes people would even ask what was wrong with her, and that would make me even angrier. But, over the last 11 years, I have learned to make the best of those situations by explaining how Ashley was just like everyone else except for a few vision and hearing problems. I tried to view each question as an educational opportunity, a way to help people accept Ashley. I wasn't always successful, but there were times I was. But the staring still bothers me, especially the staring without any questions asked.

Yesterday, all the kids, Amy and I had lunch at a local restaurant. Ashley loves to go out to eat, and since our winter vacation was drawing to a close, we decided to celebrate. As we entered the restaurant, we were ushered to a large booth that was connected to another large booth. There was a short panel between the two booths, but it didn't afford much privacy. From the moment we arrived at the booth, an older woman in the adjoining booth stared unabashedly at Ashley. This older woman was having lunch with an equally-aged friend and two children who appeared to be someone's grandchildren. I could almost read the thought bubble over the women's heads - "I'm so glad my grandchildren aren't like that."

Sometimes I will force the issue and ask the staring person if they have any questions I can answer. That will usually stop the staring or open a positive dialogue. But I decided not to do that this time. I wanted our lunch to be a family affair without the intrusion of others. But I don'tknow if that was the right decision because I was uncomfortable during the entire lunch.

I tried my best to make the lunch a positive experience for my family. The wait staff person helped tremendously by assisting with all the special food requests for Ashley. And, it was so noisy in the restaurant that Ashley's happy noises didn't bother anyone. However, I hardly remember what I ate because I was so obsessed with the staring woman.

Why do I still let people's staring get to me? Shouldn't I have been able to move past all that by now? Does anyone have any strategies for dealing with the staring and comments? I haven't made any New Year's resolutions yet, but if I do, I would like to resolve to handle situations like yesterday's lunch in a more positive way.