Monday, December 31, 2007


Tomorrow is the last day of my long Christmas break. This year I decided to take vacation for the week between Christmas and New Year’s. I wanted to spend time with my family, and I wanted to enjoy all the special happenings of the holiday season. I believe I am ready to go back to work though. I’m not quite ready to be a lady of leisure, unless of course I could win the lottery. With a ton of money, I could probably find things to fill my days!

There are a couple of things I am sorry to see end as my work week approaches. Fuzzy, warm slippers will give way again to heels. No makeup mornings will now be spent primping and blow-drying. But the absolute worst – I will once again have to set my alarm for 4:45 am.

Unlike my oldest son, I like to wake easily. While he must set at least two alarms to rouse himself in the morning, I like a very gentle start to my day. I remember as a teenager myself, my father used to come into my room in the morning, turn on the bright overhead light, and sing at the top of his lungs. At that moment, I hated him. All it takes to wake me is a light touch or very soft music playing. In fact, when I know I have the alarm set, I always wake up 10 minutes before the music starts. During this holiday season, I woke up at that same time, but was then able to drift back into delicious sleep. There will be no more of that beginning Wednesday morning. And, of course, Wednesday is forecast to be the coldest day so far this year. So not only will I have to get out of bed, I will be shivering as I do.

So, the Christmas goodies are almost gone (thankfully) – the decorations are put away – the kids are scrambling to finish their winter break school projects – and the professional me is starting to emerge from the warm cocoon of lazy days. Now I begin to count the days until summer vacation!

Friday, December 28, 2007

Looking to the Future

I participated in a person-centered planning session yesterday with my 17 year old daughter, Jessica and several other people who are interested in Jessica’s future. Although I had read and heard about the person centered approach for many years, I had never participated in the development of a plan for anyone. I really enjoyed our session yesterday, and I feel much, much better about Jessica’s future.

“The person-centered approach relies much less on the service system by organizing truly individualized, natural, and creative supports to achieve meaningful goals based on the individual's strengths and preferences. No longer is planning based on "the services available at the present time" which has been the age-old excuse that has restricted our thinking, planning, and actions. The person-centered approach creates a team of people who know and care about the individual with a disability, who come together to develop and share a dream for the person's future, and who work together to organize and provide the supports necessary to make that dream a reality.” (Garner and Dietz, Virginia Commonwealth University, Severe Disabilities Technical Assistance Center).

We began our meeting yesterday by asking Jessica what her dreams for her future were. She did an excellent job of expressing herself, and shared with us that she wants to live in an apartment with one or two other people, and she wants to be a nurse or nurse’s aide. She shared that she would like to go on vacation to Florida, and that she would really like to have a boyfriend. Sprinkled throughout her discussion was a common theme – she wants to help people.

After Jessica shared her dreams with us, we all stepped through what would have to be accomplished for her to achieve those dreams. With Jessica’s input, we developed goals for her. She knows that she must do well in school to be able to be a nurse’s aide. She said she needs to be able to read and write well and to use a computer. She acknowledged that she has to be able to get along with people, and if she gets angry, she said she needs to “learn to use her words and not her hands” to deal with that anger. She said she needs to learn how to cook and clean and do her laundry because “Mom’s not going to come to my apartment and do it for me.” Smart girl!

The next step had Jessica listing what her positive attributes were and what her not-so positive attributes were. She feels she is smart, pretty, very sociable, well mannered, and a good eater. She knows she needs to work on dealing with difficult situations and keeping herself safe and healthy. She had some very insightful comments concerning her health given that we are smack dab in the season of overeating and other excesses. She knows she needs to learn how to handle money, and how to travel to and from her job. In short, she has a very realistic and positive view of her future, and her support team and I are poised to support her in getting there.

Our next step is to find a doctor’s office, perhaps a pediatrician’s office, that will allow Jessica to do volunteer work several afternoons each week. Jessica wants to walk with the nurses to bring people to exam rooms, help record their height and weight, and help the children not be so scared. Her charming personality will really be an asset there!

I believe person centered planning is really going to make a difference to Jessica and her future happiness. Although the process is normally targeted to people with significant disabilities, I would like to go through the same process with my two sons. In my opinion, we could all benefit from sharing our dreams and goals, and identifying support systems to help us realize those dreams.

I’m very proud of you, Jessica!

Thursday, December 27, 2007

Thankful Thursday

Today, this Thursday after Christmas, I am thankful...

  • that I live in a country where suicide bombers are uncommon, and where being a politician usually does not put a bulls-eye on one's head

  • that all the Christmas goodies are almost gone. Maybe in a few weeks my jeans will not be quite as snug as they were today

  • that Amy and I were able to see a great movie last night. Juno is the story of a young girl who becomes pregnant in high school, and who makes remarkably mature decisions.

  • that Corey's grandparents decided to spend the day with him today (during their week long visit to Richmond from Florida)

  • that my washing machine was fixed today. I spent yesterday morning at the laundromat - not one of my favorite places

  • that I have this entire week off from work

  • that Ashley really likes the spinning top toy I gave her for Christmas

  • for all of Jessica's smile over the holidays. She's faced a lot of difficult transitions in the last few months, but she has never lost her cheerful spirit

  • for my health insurance. Without it, I don't know how I would afford the 9 medications Ashley is on, the 5 medications Jessica is on, the 2 that Corey must take, and the 3 that I have.

  • for naps shared with Ashley on a lazy afternoon - there is nothing sweeter

Wednesday, December 26, 2007

The Illusion of Inclusion

Esbee at the Life in Forsyth blog sent me this link, and asked what I thought about it. The story is about parents of children with autism who decided to start a charter autism school because they did not feel the public schools were meeting their childrens' needs, especially as their children entered their teens. Like a lot of parents, in fact probably most parents, of children with disabilities, the school time clock seems to move in double speed. Before we know it, our children are in high school and fears for their futures loom. Even if parents begin fighting school battles early in their child's educational journey, those battles take a long time to resolve. Valuable years can easily be lost - and skills fall further and further behind. But is the answer to pull our children with disabilities out of public school and start a new school which serves just one disability?

The story Esbee sent me was from Minneapolis, but the story is not unique. I believe in communities across the country, parents continue to struggle with a similar decision. Several years ago in my city, parents did the same thing the parents in Minneapolis are trying to do. Faison School was established to serve children with autism, children whose parents believed the public school system had failed them. There is now a waiting list for students to attend Faison, and several of the parents who have children at this school feel the change made a successful difference in their child's life. My concern is that such schools promote segregation, and I'm not sure that segregation is a good thing for our children with disabilities.

My children go to the same shops and stores that everyone else does. They go to the same church. They go to the same YMCA and the same childcare facility. They go on the same vacations and to the same restaurants as the rest of my family. They live in the same house and check books out of the same library. So what is so unique about schools that those same children must be segregrated from their peers? Yes, they need to be educated in different ways sometimes, but those different educational techniques do not, in my opinion, require them to be physcially kept apart from others.

The parents in the article that Esbee sent me spoke of the "illusion of inclusion", and I agree with them that inclusion has failed in most places. School districts say it is because of low funding, but to me it seems low commitment to the concept is the bigger problem. Also, I'm not sure that our university teacher preparation programs do a good enough job of showing that inclusion can work and instructing new teachers how to make it work.

With that said, I do understand why the parents in Minneapolis and other cities across the county are looking outside their public school systems for a better choice for their children. As parents, we always strive to do what is in the best interest of our children - especially looking to their future. And, if a school existed in my area that specialized in children with deafblindness, I probably would look into it as an option for Ashley.

I do believe, however, that as parents we must consider the whole of our childrens' futures, not just their educational needs. While those needs are extremely important, so too is the ability to live and function in a society that is composed of many different people and places. If we want our children to be fully included as adults, we must strive to have them fully included as children. Segregation in any form frightens me...

Monday, December 24, 2007

Christmas Peace

At the moment, all is right in my world. I am surrounded by my family and friends. I am setting aside the worries over Ashley's health, the battles that are ongoing with my school district, and all my everyday stresses. We are going to concentrate on all the blessings in our lives, and we will give thanks for the many good things that have happened to us all this past year. We will watch The Christmas Story and the parades. We will eat way too much food, loosen our belts, and then eat just one more cookie! And, we will go to bed Christmas night with the comforting knowledge that we are each a part of a whole.

Dave's Animals

I wanted to write a moving Christmas Eve post today, but after reading Dave Hingsburger's Animals post, I realized that not only could I not write anything more moving that that, I also knew that his piece needed a bigger audience. Something about the setup of Dave's blog makes it impossible for me to link to a specific entry, so I will repost it in it's entirety here. Thank you Dave, and Merry Christmas!!


It became the first of many. The pastor at our church once referred to me, not kindly, as 'endlessly creative'. The Sunday School had come to me to ask if I'd consider writing a play for their Christmas pagent. I didn't hesitate for a second. This began a tradition of the Sunday School having an original play for four or five years running. As a result the congregatin watched as the pulpit was turned into a space ship and they watched as aliens from Mars came and asked the children questions about Christmas and how the Children tried to make the Martians understand that Christmas was about the baby Jesus. It was fun being given this opportunity. But how do you top Martians and space ships?

The next years I borrowed from myth. Somewhere along my journey of growing up, I was struck by the myth that animals can talk - once a year - on Christmas eve. As a child I tried to imagine what the animals at the stable would say. Now here I was an adult getting the opportunity to write the words. I finished the play, gave it to the Sunday School teacher, and waited. She called me a day or two before the performance and said, "The kids are really into this play this year. They loved the spaceship and aliens one but this one is very special. They even have asked the minister if they could bring a real dog to add to the atmosphere. I think you are going to be pleased she said.

Pagent day and we had a big crowd. I wrote for the local paper, a monthly column on faith issues, and I'd mentioned this play in my column ... several had come to check it out. It began with the animals slowly coming to speach and usng that speach to complain, cow telling horse "For all these years you've been crowding me here' pig telling dog, "You've gotta do something about that breath of yours." Then the horse saying, "We're talking and all we are doing is complaining, shouldn't we really talk to each other." At that point the animals are asked if it would be OK for a couple to spend the night. She is pregnant.

Then they all go on about why they don't want to help humans. Humans use them, disrespect them, why should they do anything for the humans. "I'm going to be bacon in a few weeks and they want my bed!" "They ride on my back all day and they expect me to give up what moments of peace I do have." Oh the animals weren't all that fond of the idea. Mary and Joseph and their trusty dog (they'd have had a dog) are making their way down the aisle of the church towards the stable as the animals protest and complain.

Something happened then. The complaints started to become adlibbed. I hadn't written enough dialogue, Mary and Joseph (and trusty dog) we only halfway down the aisle. So the kids filled in. The tenor changed. parents sat in the audience as their children said lines like, "They don't hug me enough ... They make me feel like I'm always in the way ... I get frightened when I have to wait alone at home after school ... These children weren't acting now. They had been given voices and were using them. Parents sat rivitted, I saw no anger on any face, I saw love and concern, but mostly I saw realization. Their kids had been given the power of speach.

Finally Mary and Joseph arrived at the stable and the words became mine again. Many asked gently if the animals could spare a bit of room. They all backed up and the holy family huddled around and the animals surrounded them with and offered them warmth and protection. By morning they'd lost their speech again.

It had gone very very well. At coffee everyone was talking about the play, no one was talking about the moment that children got speech. Everyone acted like I'd written the words. I called the Sunday School teacher a day or two later and she told me that all the parents said that they had heard their kids and every one of the families had thanked her for that moment.

For me, it was a moment of enlightenment too. Understanding that having speach isn't the same as being heard. That they call it the 'power of language' for a reason. That those who are powerless have voices too.

As one of the children ad libbed, "And you know the baby Jesus is going to need you to pay attention every now and then."

Amen to that.

Friday, December 21, 2007

Christmas List

  • Christmas tree and decorations up - CHECK

  • Christmas cookies made - CHECK

  • Gifts bought and wrapped - CHECK

  • Christmas menu planned - CHECK

  • Take Ashley to see Santa BECAUSE SHE SAID SHE WANTED TO GO - CHECK

  • Pay to repair Santa's bells which were hurled across the mall and the stitches for the child whose head 'found' the hurled bells - CHECK

Merry Christmas, everyone!
(click on the picture for a larger view of the Christmas spirit on Ashley's face)

Happy Anniversary

Happy Anniversary to Pipecleaner Dreams!! One year ago today this blog was born. What started with dancing in gym class, moved through stories about my children (Chip, Corey, and Jessica), stories about educational challenges(here, here, here, here, and here), and medical challenges and stories about friends and special people in my life. I’ve blogged about disability issues which stir my heart and mind, faced some bleak days along the way, and decided to at least once a week focus on the things for which I am thankful.

Ashley’s story, the reason for the birth of this blog, was included in a book by Jonathan Mooney. Our family’s story about adoption was included in Richmond Magazine. And, one of my Thankful Thursday blogs is being published and distributed by Carilion Labs.

I’ve ‘met’ other bloggers like Dave Hingsburger, Casdok, Penny Richards, Candice, Ballastexistenz, Katrina, Mommy Dearest, and Attila the Mom whose intelligence, compassion, and commitment to tell the stories of people with disabilities amaze me each and every day. People who I have never met in person and who may live miles or continents away offer support and words of encouragement when I need them. And I hope that along the way this past year, my words have also touched others and perhaps have changed views regarding disability issues and adoption issues.

I’ve never found writing this blog to be a chore or a challenge. It’s my record of thoughts for my children. It’s my voice to the world, or at least the part of the world which chooses to read it. And it is ultimately, in the words of Attila the Mom, Cheaper Than Therapy!

Here's to 2008!

Thursday, December 20, 2007

Where Do You Stand?

I searched You-Tube to see if I could find anything about where the 2008 Presidential candidates stand on the issues of disability. I couldn't find much, but here are three items posted by the National Autistic Society of America. I'll keep looking and post more as I find them.

Barack Obama

Mitt Romney

Hillary Rodham Clinton

Thankful Thursday

Today I am thankful...

  • For my glove mittens – gloves and mittens all in one. They keep my fingers toasty but still allow for some fine motor control for things like throwing quarters in the toll collector.

  • That there is a small chance, according to our TV meteorologist, of snow for Christmas day.

  • For the buckeye candy that my boss shares with us each year. They are small balls of peanut butter flavored candy covered in chocolate. Yummm!

  • That not everyone ignores the scruffy man standing by the side of the road holding a sign that says simply "Hungry". I asked him what he would like from McDonalds for breakfast tomorrow. We will be having bacon/egg/cheese biscuits.

  • That my Christmas shopping is complete!

  • That in just 5 days my brother and niece will be joining us for Christmas

  • For the new book I got – Chicken Soup for the Soul, Children with Special Needs. I can’t wait to start reading it.

  • For all the Christmas treats Amy made for school but also shared with me.

  • For my favorite Christmas song – “Mary, Did You Know” – written by Rufus Greene and Mark Lowry

  • For my pyracantha bush, beautifully loaded with lots of red berries

Wednesday, December 19, 2007

Holiday Month - Christmas Day

Next year I want to do Christmas differently. While the commercialism associated with the spiritual celebration has always bothered me a bit, it is indeed very easy to get caught up in the over-the-top decorations, the store sales, the TV shows and ads, and the overall hype of the holiday season. I have tried to shift my family’s focus to the spiritual celebrations, but I have usually been unsuccessful. But now that my children are all old enough to have set their Santa beliefs aside, I think the time might be right for a change.

Next year we will be celebrating Holiday Month for the entire month of December. On December 25th we will celebrate Christmas Day, a day for our spiritual celebrations. We will shift our gift giving away from that day, and we will open up Holiday Month for gifts. The rules are simple. Each family member can present a gift to another family member anytime they choose during the month, with the exception of Christmas Day. They will still be encouraged to make the gift giving a surprise, something to be anticipated and awaited. When someone is ready to present a gift, we will all sit together so we can oooh and aaah over it, and the receiver doesn’t have to wait until Christmas Day to play with/wear/enjoy their gift.

We always put our Christmas decorations up Thanksgiving Weekend, so those will be at the ready for Holiday Month. We can still enjoy traveling around town to see the tacky lights, watching special movies and tv shows, getting caught up in the shopping crowds if someone wants to do that, and we will make our holiday cookies and snacks early so they are available all month. But when Christmas Day arrives, our eyes and hearts will lift to the spiritual. We will continue the tradition I started when my oldest child was born of having a birthday cake for Jesus. We will visit church and sing our thanks for both the Holiday Month and for Christmas Day. Our Christmas Day will be joyous but with a joyousness that doesn’t reflect the more commercial aspects of the holiday.

I have discussed this new plan with my children, and while I believe the thought of receiving gifts all month was the main selling point, they all agree we should try it. So, check back with me in a year, and I will give you an update. In the meantime, if anyone has other ideas to separate the commercial and the spiritual aspects of Christmas, I would love to hear about them.

Tuesday, December 18, 2007

My Toes Hurt

I have to keep reminding myself that Ashley will soon be a teenager. It should be easy for me to remember since she has been displaying typical teenager behavior for about the last year and a half. Officially though, she won’t turn 13 until next March.

Even though she is approaching my height and can no longer fit into children’s sizes of clothes, I find myself still thinking of her as my baby. I want to be able to explain her actions and her behaviors the same way I did when she was an unruly toddler or a mischievous elementary school child. I keep thinking the same techniques I used to parent her at those times should still work now – but they don’t.

She has always been strong-willed, but now that strong will can become a tad annoying at times. She is now in charge of when she doles out hugs and kisses, and if the time is not right, she will push me away. She has very definite opinions on what she wants to wear, and she will stomp her foot and walk away if I try to push something that I want her to wear. She has no qualms about punching one of her brothers if they invade her space or don’t acquiesce to her demands quickly enough. She knows exactly what she wants to eat and the feeding therapy techniques from her younger days are useless now. Like my other teenagers, she can bring out the worst in me as a parent, but at the same time, she can also bring out the best.

She keeps me on my toes. She challenges me and teaches me. She refuses to let me think I’ve got all the answers because, as we all know, teenagers really have all the answers. She is a handful during the day but an armful at night when I tuck her into bed and she finally agrees to snuggle like she did as a toddler. She is beautiful and special and I am very proud to be the mother of this cantankerous, rebellious, and moody teenager!

Monday, December 17, 2007

No Soup But a Talking Bus

Many gains have been made in my community around physical accessibility. Even my neighborhood, probably because it has an elementary school planted in the middle of it, has curb cuts on all the sidewalks. Most government buildings are now physically accessible, and most shopping centers and malls have been built with or modified with accessibility in mind. A few of the older standalone or strip mall stores have missed the mark by not having handicapped parking and curb cuts close to the store, but overall things aren’t too bad – that is, until you go into one of the stores or buildings.

I wanted to do some Christmas shopping with Ashley this past weekend. Although Ashley can walk, if we have to walk long distances, we usually use her wheelchair. Maneuvering the wheelchair at the grocery store was no problem. The aisles were wide, and store clerks were always around to help should we need it. Target wasn’t too bad either. Most of the Target stores in my area have recently been remodeled, and it appears that accessibility was considered for the remodeling. Again, the aisles are wide and usually unobstructed. The restroom facilities were very accessible and clean, and even the Starbucks in the front of the Target store had lots of open space for a wheelchair to travel. But as we left Target and traveled to smaller stores, we discovered major difficulty with Ash’s wheelchair.

I wanted to go into World Market to pick up a soup mix that I can’t find anywhere else. Unfortunately, just trying to get in the front door of the store meant having to move in and around displays of furniture. I had to move one chair out of the way just to get Ashley’s wheelchair into the front door. After stepping through the door, I immediately realized we couldn’t go any farther with the wheelchair. There were no aisles, only displays placed helter skelter, and packed in so tightly that even walkers had a tough time getting through. The World Market clerks saw my dismay, and everyone one of them turned away. Needless to say, I’ll be changing soup mixes.

After World Market, we tried Pier One. Again, although it is one of my favorite stores for unique Christmas gifts, it was arranged very similar to World Market, and we couldn’t get past the front door. Then it was on to Borders Book Store. They had close parking and curb cuts but aisles so narrow that it was impossible to get the wheelchair through them. At that point, I gave up.

It truly is time, in my opinion, for retailers to make necessary accommodations for physical accessibility. Just having parking spaces and curb cuts is not enough. While many stores are worrying about making their holiday sales predictions, they are effectively excluding a large market of buyers. But then again, maybe that is one of the reasons online shopping is flourishing…

One a more positive note – I heard a bus talking today. As I was crossing a downtown street, a bus pulled to the curb and announced where it was headed. Maybe larger cities have had these talking busses for a while, but it’s a first for my city. What an incredible idea for bus riders who are blind.

Friday, December 14, 2007

Open Your Eyes by Rapper Sean Delaney

Sean Delaney is musician as well as a Direct Support Professional with the Special Needs Program in upstate New York. After spending several years working with adults with autism and other developmental disabilities, he felt compelled to speak to his generation. This song is a plea to his peers to open their eyes and encourage them to become more aware and involved with this rapidly growing population. Please visit Sean's myspace site for more information about him and his music - Sean's MySpace Page

My Mind Wanders

I’m not sure why, but I am seeing so many pregnant women these days. I know that often nine months after a major weather event – e.g. a snow storm that keeps people indoors for days or weeks – more babies will be born. But, I can’t think of anything like that which occurred in the last 6 or so months. Some of the pregnant women I know are employees of a school district, and most of their babies are due in the summer. That makes sense to me – they can spend their maternity leave at home during the summer and then return to teach again in September. But an obvious explanation doesn’t seem to exist for the rest of the pregnant women I know. Maybe it was just a real fun spring and summer for some folks!

While thinking about all the women that are pregnant, I pondered what their reactions would be if they could find out before their baby’s birth whether or not the baby had significant disabilities. Women over the age of 35 are routinely tested for things which could be affecting their babies, but if a woman is under the age of 35, I believe more often than not, doctors assume everything is fine unless there is some extreme indication otherwise. But what if all pregnant women could find out definitively the health and disability status of their babies before birth?

What would you do if you were pregnant and your doctor told you that your child would have cerebral palsy – or deafness – or blindness – or Tay Sachs Disease – or Down Syndrome – or Autism - or maybe several of those things? I don’t want this to be a discussion of whether abortion is right or wrong, but rather, what would your first reaction be? And, once you had made a decision about your pregnancy– regardless of what it was – what thoughts would be going through your mind?

If your decision was to continue with your pregnancy, would your joy be lessened? Would you stay up nights worrying and planning, or would you delay those things until after the birth? Would you hold out hope that the doctor was wrong? Would you pray to your God to heal your unborn child? Would you start to research what services and aides you would need, and would you look for doctors who would welcome your child after birth? Do you think you would love your child even a little tiny bit less knowing that he or she would have health issues or disabilities, or might you love them more because of those things? And what would you share with your families and friends?

Would it make a difference in your thoughts and actions if the disabilities revealed by your doctor were very significant? Or would the type of disability make a difference? When I attended adoption classes prior to adopting my girls, one of the questions I had to answer was what type of disabling condition would I accept in a child. A page listing everything from learning disabilities to AIDS was given to me to check off which I would accept. If you had a list like that given to you about the child you were carrying, how would you answer it? I had a really tough time answering the one provided by my adoption agency. I can’t imagine what I would do if I had to consider those same questions about a child I was carrying inside me.

I believe that one day in the not-too-distant future, all pregnant women may be presented with these questions. Medical science is advancing constantly, and one day as soon-to-be mothers, our jobs, our responsibilities may become even more immense than they are now. How will we as a society handle this? Will we completely eradicate certain disabling conditions because we have the ability to identify them in our fetuses? Is that a good thing or a bad thing?

Just wondering, just pondering, just admiring the strength of women, especially those who are or will be struggling with the decisions and issues of motherhood.

Thursday, December 13, 2007

Thankful Thursday

Today I am thankful...

  • for butter - the staple of Ashley's life

  • for the fresh strawberries my elderly neighbor shared with me this week. Strawberries in the winter can taste so sweet, especially when shared!

  • for the Governor of Virginia who believes everyone should have access to health insurance

  • for the wife of Virginia's Governor who believes all children deserve a permanent home

  • that I only have one more Christmas gift to buy and then I am finished shopping!

  • that Ashley's wonderful teacher is pregnant with twins!

  • that most of the food from last week's Holiday Open House is almost gone. I never thought I could ever have enough spinach dip. I was wrong.

  • that Amy is moving to a new apartment, and it is less than a mile from our house

  • for Christmas gift bags. I really don't enjoy wrapping presents, and it shows

  • that I saw Ashley's sweet smile several times yesterday. Because she has been feeling poorly, her smiles have been few and far between

Wednesday, December 12, 2007

NEEDED - A Different Perspective

I’ve never been a person who is afraid of taking medicine. Whether for me or for one of my children, I believe that if a medicine will help it should be considered. I’ve had friends who absolutely refuse to medicate their children for diagnosed conditions such as ADHD. They prefer to rely on behavior modification. I agree that behavior modification can certainly help, but sometimes it works better when combined with an appropriate medication. My mother was not good about taking medicine. Whenever she had a bad infection (sinus infection, bronchitis, etc.), she would get her prescription filled but at the first side effect, such as an upset stomach, she would abandon the drug. That practice made her body very resistant to antibiotics at times when she really needed them. All this is not meant to imply that I just blindly accept whatever medication a doctor recommends. I do ask questions about the side effects. I often do research on the Internet. But if the information that I find isn’t too negative, I will usually trust that my doctor is prescribing the right medication for me and my children. However, I am currently questioning that trust with some of Ashley’s doctors.

Ashley, as I have written about many times before, has epilepsy. As an infant, getting control of her seizures was very difficult. But, the pediatric neurologist I found right before bringing her home, did a good job of finding the right medication for her to control the seizures. That medication worked for about 9 years. But as puberty came knocking, the seizures increased drastically and the medications stopped working. She is still being followed by the same neurologist, and his response to the increased seizures is to prescribe additional medicines. Ashley is still taking the medication that worked for a long time but then stopped working, and she is taking 2 other anti-seizure medications. The side effects from those new medications are significant and negative, and the seizures, though fewer in number, are still occurring.

Last summer I had to convince the neurologist to do an MRI. He relented, and that was how we found out Ashley had three brain tumors. The neurosurgeon who saw Ashley for those tumors still doesn’t believe the tumors are the source of the increased seizures. But, neither the neurosurgeon nor the neurologist can tell me what the source is. My next question to the neurologist concerned the effect of hormones on the seizures. Did he think Ashley’s entry into puberty could be causing the increase in seizures? He said he did not believe so. Still, though, I wondered, and scheduled an appointment with an ob/gyn. The ob/gyn conceded that there might be a connection, and decided to prescribe Depo Provera, a birth control shot given once every three months. Ashley started that at the end of this past October. Unfortunately, the side effects of that shot have been quite negative, and yesterday, the ob/gyn prescribed low-dose estrogen to try to counteract those side-effects. After all these new medications, I wonder if Ashley’s little body is turning into a toxic waste dump. And, she still is no better. Actually, she is worse because of all the medication side effects.

So what am I to do? My next step, unless someone can convince me otherwise, is to seek out a second opinion. I would like to take Ashley to a large medical center, someplace like Johns Hopkins, and get a complete medical workup. I would like new eyes to review everything that has and is still going on with her and then give me recommendations. I want an answer about the seizures. I want the fog that has been plaguing her to lift. I want my sweet, loving child, the child with an unparalleled zest for life to come back to me. Is that too much to want?

If anyone has any suggestions about a good medical center or epilepsy center, I would love to hear about it.

Tuesday, December 11, 2007

East End Back-of-the-Bus Riders

I live in a county whose land boundaries are shaped almost like a school bus. When residents refer to anyplace in the county, the reference is always to either the West End of the county or the East End of the county. I have always lived in the West End, however recently my oldest daughter, Jessica, was moved to a high school in the East End. The East End high school could not be any different than the school she used to attend in the West End. The differences take me back to a time when riding the back of the bus was reserved for those people deemed inferior than front-of-the-bus riders. The East Enders are back-of-the-bus riders, and the West Enders get the reserved front-of-the-bus seats.

The West End schools, elementary, middle and high, are primarily shiny and new. Classrooms are large and bright – computers are everywhere, including in the hands of every student – landscaping is colorful and well-planned – and most of the schools are accessible. The East End schools are old and born of an architecture style that reminds one of fallout shelters and fabulous fifties furniture. Classrooms are small and dark – the only computers I saw were in the office – landscaping is raked dirt – and accessibility was obviously an afterthought, a retrofitting that has failed. I had hoped that the major differences were these visible things, and that the education, especially of students with disabilities, would be consistent between both ends of the county. Unfortunately, that was not the case.

At the IEP meeting I was attending last week at the East End high school, the school staff seemed surprised that I was requesting actual academic instruction for my daughter with significant disabilities. Jessica had been doing reading, math, science and civics at her West End school. The East End school fills her day with laundry, bowling trips, cooking, and stuffing shredded money into little plastic bags to be sold. I said I liked that Jessica had been doing PowerPoint presentations and sending email at her West End school. The staff at the East End school seemed surprised that I wanted her to have a computer. The daily schedule posted on the blackboard (West End schools have dry erase boards) at the East End school showed 45 minutes each school day of ‘functional academics’ – 45 minutes out of a 6.75 hour day. When I asked how many other students in Jessica’s classroom were verbal, I was told only a couple, and was then offered speech therapy for Jessica. I was told she could not go to the ‘higher functioning’ (their words, not mine) classroom at the East End school because the children in that class had major behavior problems. So, setting aside for a moment that we were there to discuss Jessica’s needs not the school’s poorly planned program, I could easily understand the behavior problems. There are approximately 20 teenagers stuffed into a classroom made for 10, and the teacher seemed to have better things to do than teach. The students in that higher functioning classroom were discussing who was sleeping with whom. Educational perhaps – but not the type of education any of the children at the school needed.

If the meeting I was attending, with the attitudes and comments of the school staff being made, were in the West End, things would be totally different. Parents of students in the West End would not tolerate such a meeting. If a West End high school meeting contained discussion on children doing laundry and not having a computer, a West End parent would have lawyered up in the time it took to pull her Blackberry out of her Gucci bag and press speed dial.

East End parents may not even have a phone at home. A lot of them don’t have the knowledge of their children’s rights, or how to effectively advocate for their children’s needs. According to the East End staff, it’s a good day if some of their students show up at all for school. The East End students are the back of the bus students, and I am appalled that my school district allows such discriminatory and inequitable practices to continue.

Sunday, December 9, 2007

Tracy Latimer - A Life Cut Short

Tracy Latimer was a 12 year old girl with cerebral palsy. She went to school, seemed to enjoy it based on comments from her teachers, and most people considered her to be a happy child. She was known to laugh a lot, and she had many friends.

But her father saw things differently. Robert Latimer decided one day to take Tracy for a ride in his truck and then leave her with the car running and a cloth stuffed into the tailpipe. Tracy died.

Robert Latimer tried claiming it was a mercy killing - a compassionate homicide. He claimed that his daughter suffered greatly, and that he did not want her to suffer anymore. No one else ever said that saw that suffering though.

Robert Latimer was arrested and tried for and convicted of second degree murder. After a lengthy legal appeal, all the way to the Canadian Supreme Court, Mr. Latimer received a sentence of life in prison with no parole for at least 10 years.

Mr. Latimer has served 7 years and last week, tried to get parole - day leave so he could go to work. The parole board refused to grant his request – thankfully. The 3 board members at William Head Institution, a minimum security facility on Vancouver Island said they were left with the feeling Robert “Latimer has not developed sufficient insight and understanding of his actions.” The board recommended that Mr. Latimer participate in some counseling and he won’t have another chance to apply for day parole for two years.

Parole Board's Latimer Ruling

Yesterday, Brooke and her mother came to my house for a Holiday party. Like Tracy, Brooke has cerebral palsy. She is also deafblind, tube fed, and has a trach. The one thing Brooke has that Tracy did not is a parent who loves her and respects her.

Brooke’s life, though different than some children her age, is full and rich. Like Tracy, Brooke is happy and laughs a lot – big belly laughs that make everyone around her laugh also. She has friends, goes to school, and has a crush on the host of Blues Clues. She is a vibrant and engaging little girl who has made this world a brighter place. Tracy, unfortunately did not have that chance.

If only the parole board could add years to a person’s sentence, not just reduce a sentence….

Thursday, December 6, 2007

Thankful Thursday

Today I am thankful...

  • For quiet mornings spent having breakfast with Ashley.

  • For my early Christmas gift of the softest, warmest slippers ever. Thank you, Amy!

  • That I live in Virginia. It’s a beautiful state, and with a two hour drive I can be sitting on the beach gazing at the ocean or skiing down a snowy mountain.

  • For the Starbuck’s Apple Caramel Spice drink – yuuuummmm!

  • That my son, Corey, only failed one class on his most recent report card. The rest of his grades were A’s and B’s. This is actually progress over earlier report cards.

  • For the brief snow showers we had yesterday morning.

  • For tacky, gaudy Christmas lights on houses. We love driving around town to see them!

  • That the jack hammering that has been going on right outside my office window for the last few weeks has been silent for two days now. Is it too cold for jack hammering, or might the work be finished (she asked with a hopeful lilt to her voice)?

  • That there are still some people who find time to send Christmas cards by regular mail.

  • For flannel pajamas and a down comforter on the coldest night of the season

Wednesday, December 5, 2007

Make It Stop, Please

Your day started off rough, didn’t it my sweet Ashley? Just like so many other days recently. Although you wake up with a smile on your face, it’s not long before a seizure steals the morning joy from you. I know you don’t understand the funny feelings in your head just before the seizure erupts. I see the confusion on your face as you get very still, your eyes moving rapidly back and forth, trying to make sense of the buzzing, the lights, the dizziness, or whatever the feelings are that course through your brain. You hit your head trying to clear the fog, trying to make the strange sensations stop. But it doesn’t work.

In just moments, your body stiffens and the fear is in your eyes. For a short time the essence of you is gone, and the shell of the seizure is all I see in your face. It’s so scary for me, but I know it’s much worse for you. If only you could make it stop, if only I could make it stop for you.

As the seizure retreats, the light returns to your eyes. Still the questions remain, still you are upset and hate that you have no control. You are tired and upset, and the tears soon follow. I help you to your room so you can lie down and attempt to organize the sensations surrounding you. You return to the comforting actions you so love – the turning from side to side, the vibration of your battery toothbrush in your mouth, the warmth and pressure of your heavy quilt.

I know you hate the seizures – hate the aggressive behaviors that sometimes follow. I hate that people will think you have an aggressive nature when the complete opposite is true. The seizures turn you into someone you aren’t. They take over the compassion, the love, the gentleness and the warmth that define you, and cause you to become something you don’t like.

Just know, my sweet child, that even though I haven’t been able to stop them yet, I will never stop trying, never stop looking for answers, never give up trying to make your life better.

Tuesday, December 4, 2007

Heating Up Autism

Hitting the airwaves yesterday was a story on most major news outlets about how a fever can temporarily unlock Autism's grip on children. Here is a link to the story on MSNBC:

Elevated Temperature Can Restore Cell Communication in Brain

I really hope as parents and others whose lives are touched by a person with Autism hear and read these stories, that they see the information as offering a clue for treatment and not a cure. The fact that many people want to 'cure' autism bothers me, but I'm not sure I can do a good job of explaining why.

I am one of those people, one of those parents, who sees a child first and the disability second. In fact, I believe the world is a richer place because everyone is different. Diversity is, in my opinion, beautiful. If we, as a society, could 'cure' every disability, should we even want to?

I strongly suggest that before you answer that question, you view the following slideshow. It's not easy to watch, but its message is profound.

Getting The Truth Out

Journey Back Into Time

A dear friend of mine sent me two pictures from my past yesterday. The first thought in my head was “Great way to start a Monday morning – with a picture that makes me feel old and fat.” But, after the initial shock of seeing the much younger me, the pictures caused me to reflect on my past. Between the time that the pictures were taken and my here and now, my life has taken many twists and turns. I wondered if I went back to that earlier time, would I change anything, any decisions I have made along the way. And, I believe I would only change one thing.

The pictures my friend sent me were ones taken my first day as a police officer. I was 19 years old, quite na├»ve and inexperienced, but hell bent on proving myself to my friends and family. What better way to do that than to become one of the first 5 women police officers for a city force that didn’t want women officers. The work was exciting and dangerous, depressing and life-affirming. I learned a great deal in the 5 years I worked for the police department, but knew early on that such a career was not in the cards for me. Being a police officer changed my fundamental outlook on life, a change I did not like, and as such, I had to move on or lose myself.

Through the years, I have built a career in computers for myself, a career which flourished because my timing was good. I’m raising 4 wonderful children, and they are my proudest accomplishment. I’ve found great friends along my life’s path, and I have enjoyed life in the ways I wanted to enjoy it. I’m satisfied, and I believe not everyone can make that statement.

So, what’s the one thing I would have changed? Most people who know me would expect the answer to be that I would not have spent 14 years in a marriage to an abusive alcoholic. While those 14 years were indeed the lowest point in my life, one incredible thing came of that pain – my now 17 year old son, Chip – and that is one thing I wouldn’t change, no matter what.

I've decided not to share with the world the one thing I would have changed. The other person involved in that decision knows what it is. Let's leave it with I made a decision that I regret even today - 30 years later. But hey, one regret is not too bad in a person's entire life time, right?

I am who I am today because of all I have faced since the pictures of that 19 year old police officer were taken. I like who I am, and I like what I am accomplishing. How about you – if you could travel back to your youth, would you change anything?

Monday, December 3, 2007

Birthday Girl

My daughter, Jessica, is 17 years old today. It’s so hard to believe that the tiny 9 year old I brought home 8 years ago, the child who couldn’t walk or talk so that she could be understood, the child who was not toilet trained and couldn’t do any of her own self-care tasks, is today a fine young woman. Though still battling the demons that erupt as aggressive behavior from time-to-time, Jessica has learned most of the skills she will need to lead a semi-independent adult life.

Today, she can make her bed, do her own laundry, help with cooking and clean up, shop for life’s necessities, and attend to all her own personal grooming tasks. She reads simple books and can do basic math. She can use a computer, and loves to send email to her friends and family. She knows how to use a phone and leave a voice mail message if the person she called is not available.

One thing that hasn’t changed is her happy, vibrant personality. She is even more of a social butterfly now than she was 8 years ago, and she has very definite ideas about what she wants to do with her life. Other than the times when the demons turn her vibrancy into aggressions, everyone says she is a joy to be around.

With the proper supports in place, Jessica has a very real chance at a rewarding, fulfilling future. I am proud of her and all she has become and what she is yet to become.

Happy birthday, Jessica!