Thursday, December 20, 2012

Unwrapping My Present Today

I've decided that my Christmas gift to myself this year will be time - more time with my children, more time with a book and not a computer, more time experiencing instead of writing about experiences.

My children and I are so very blessed, and I feel the need to just concentrate on those blessings for a while. I don't want interruptions from the email call, 'You've Got Mail.' I don't want to read Facebook posts that threaten the peace I feel during this glorious holiday time. I don't want work stressors to invade my mind.

I want to hug more friends, fill my family with hot cocoa and cookies, and watch cheesy holiday movies. I want to snuggle on the couch, smell wood smoke in the air, and wear new Christmas pajamas.

To make these things, and all my other holiday wishes front and center, I need to take a break from blogging. For the next few weeks, I am going to step away from the computer and step toward my blessings. I've included one more video for you of another of my favorite songs in ASL. I hope you all have a wonderful holiday season and that all your dreams come true! See you in January!

Wednesday, December 19, 2012

Special Exposure Wednesday

I'm not sure this is exactly what Apple had in mind when they created their FaceTime software...

Tuesday, December 18, 2012

In Their Memory

I've wanted to write something about the Newtown tragedy ever since it happened, but I just can't find the words.

From the first moment I heard about the shootings, and with each news report since then, I get a tight knot in my stomach. I can't separate what happened to the children and adults in Newtown from what *could* happen to my children.

I had the same feeling about the 9/11 attacks. From a rational point of view, I could accept that on that September day it was unlikely that my children would be targets in their elementary school. But it didn't matter - I had to leave work, I had to pick them up from school, and I had to hold them tight.

Such tragedies can't be in my mind and my heart something that happened to other people, other children. The very fact that it happened to them means it could happen to my children, and such a thought leaves my no words to express my feelings.

I'm on edge now just like I was after 9/11, just like I was after the movie theatre shootings, just like I was after the Virginia Tech killings, and just like I was after the mall shootings. In fact, I have trouble going into a mall or a movie theater, or any public place for that matter, without scoping out escape routes, playing out 'what ifs' in my head. And there's one thing I know, I absolutely do not like living like that.

I don't have any answers, and don't even want to start debating things like 'more gun control' or 'less gun control'. I hate that we have to consider increasing the security in our schools. I hate that we are taking away the innocence of our children, and the peace they should be feeling as they grow. And I hate that some people will be saying that the Newtown killer had Autism and that is why he did what he did.

I want to find a way to tell my children that evil does exist in the world, but that they can't live their lives dwelling on that. And then I need to learn to take my own advice.

I am so sorry for each and every one of the parents, husbands, sisters, other relatives and friends of the people murdered in Connecticut. I hope you can find some peace in the fact that as a nation our outrage will drive us to positive change for the future. We will do it in your loved one's memories.

Monday, December 17, 2012

I Hope My Child Has Scurvy

What? Does that sound strange to you? Strange that I really hope that Ashley has scurvy? Well, it's true.

About 6 weeks ago, Ashley started having problems with her foot and ankle swelling. The doctors have ruled out a blood clot - the scariest thing that could be causing the swelling. But, we are still waiting on a cat scan under anesthesia to get scheduled to see if that gives any clues about the swelling.

Then last week, Ashley came home with a strange rash-like coloration on her right forearm and hand. The school staff and I couldn't come up with anything that might have caused it, so off to the doctor we went again. The doctor called it petechiae, and immediately began scouring her medical resources to try to figure out what strange disease or condition might present with both a swollen ankle and foot and a rash on one arm.

We spent three hours in the doctor's office that evening last week. The cleaning crew was in, but the doctor and three nurses refuse to leave until they could figure something out. After 8 tubes of blood and instructions for obtaining a urine sample, we went home to wait the test results.

All the scary things have been ruled out. Ashley's glucose and electrolytes were fine. Her kidney function and liver function were fine. Test for autoimmune diseases came back negative. And finally, the urinalysis revealed nothing out of the ordinary. But the doctor kept researching, researching until she found a likely culprit - or at least a culprit that is easy to treat while we wait for other tests and the cat scan.

That likely culprit is scurvy. Yes, the disease of 17th and 18th century sailors making their way across the oceans without proper nutrition, specifically foods rich in vitamin C.

Ashley does have a very limited diet. She was tube fed for quite a while, but after a couple of years in the feeding clinic at our local children's hospital, Ashley has been eating by mouth - but not eating a wide variety of foods. As the doctor and I went over in detail what Ashley does eat, on the surface, it's not too bad. Raw spinach, peas, apple sauce, mac and cheese, hummus, yogurt, potatoes, and lots of cheese. What is missing from that list is any food to provide vitamin C.

So the doctor has started Ashley on a daily multivitamin and twice daily vitamin C, both liquids given through her G-tube. And already, Ashley's arm has improved. Her swelling is still there, but the doctor thinks that may take up to a month before we see improvement if the culprit is scurvy.

So now you understand why I say I hope Ashley has scurvy. It's very easy to treat - nothing invasive, nothing too difficult.

Here's hoping scurvy is truly the culprit!!!

Friday, December 14, 2012

I Need You, Dr. House

Recently, Ashley has had so many different and unusual symptoms of things gone awry that I feel we are living in an episode of House. I'll report more next week after some more blood test results are in, but for today, I thought you might enjoy this litte House montage. I needed a little uplifting today, and this did the trick!

Thursday, December 13, 2012

Letter to Santa

Dear Santa,

Ashley asked me to write her letter to you this year. She really only wants one thing for Christmas - a break!

Between the (still) swollen leg and foot, the too-many-to-count ear infections, the physical abuse inflicted by a school employee, and now, the unexplained scary rash on her right arm, she says she has had enough.

She really isn't greedy. She understands that people have to deal with illnesses and injuries, and she is indeed willing to endure her fair share. It what comes above that fair share that she doesn't want.

So, she said you could forget the toys, the clothes, the makeup, and the other wonderful things you have brought her in the past. She really only wants a break. Do you think you can find one of those in your magic bag?

I really hope so!

Cordially yours,
Ashley's Mom

Wednesday, December 12, 2012

Special Exposure Wednesday

There's nothing better than playing blocks with your big brother on a rainy Sunday afternoon!

Tuesday, December 11, 2012

That Scary Man in the Red Suit

I must admit that the worst part of the Christmas holidays has always been trying to get my children's pictures taken with Santa. The picture to the right was my last attempt at getting a picture of Ashley with Santa. I cajoled her personal care aide into attempting the meeting, hoping that if Ashley was with someone other than me, she might behave differently. (I was wrong...)

I have a whole slew of pictures and even a couple of videos of my oldest son taken with Santa. But I only have a couple of pictures with Ashley, taken when she was an infant. I've tried over the years with her, but after three annual pictures of her screaming as she was being led up to Santa, I gave up.

Had something like this, A Caring Santa, been around, I might have been a little more successful. According to the Caring Santa website, "Children with special needs and their families are invited to a special photo session with Caring Santa in an environment set up to support the sensory, physical and other developmental needs of kids with all abilities." You may want to check the website to see if the Caring Santa is going to be at a mall near you.

What about you? Do you have any special techniques or strategies for getting a picture with Santa for you child with sensory or other developmental needs?

Monday, December 10, 2012

Move To The Back...Of The Restaurant

This might just be my imagination, but it seems that often a restaurant receptionist will seat my family in a far corner, away from the other diners.

It happened again this past weekend.

I can understand that we are seated wherever there is a table (instead of a booth) since Ashley and Ronnie use wheelchairs. But in the restaurant we went to for lunch on Saturday, we passed several open tables in the main area and were taken to the back. The only other diners there had a small child who was obviously not having a good day.

I've noticed this in nicer restaurants as well as the more family-oriented ones.

Do they think my children may make a scene? Are they uncomfortable with obvious disability and don't want to disturb the other diners? Is it uncomfortable to eat beside a person that is blind or a person with spina bifida?

Like I said, I hope it is just my imagination, but it really has happened enough times to make me think it's not. Have you experienced anything similar?

Since we eat out a lot as a family, I think I will start paying closer attention to try to figure this out!

Friday, December 7, 2012

So Tired of This &^%$*#

Dear St. Mary's Hospital Administrator:

My daughter, Ashley, is 17 years old and has many special needs. Unfortunately, she also requires a lot of medical interventions. In the past, we have always found the medical help she needed at your hospital. Sure, there have been some bumpy spots along the way and that one time that was beyond words bad, but overall things have gone well. Until yesterday...

Ashley has had a severely swollen ankle and foot for 6 weeks now. When it started, her doctor had us immediately go to a hospital that was not yours (because you weren't available on a Saturday morning for an emergency) for an ultrasound and blood test to rule out a blood clot, a life threatening condition. Fortunately, there are no blood clots. But Ashley's ankle and foot are still swollen.

Ashley's doctor then decided to order a cat scan under anesthesia at your hospital. When I didn't here anything from your staff for two weeks, I called to find out when the procedure would happen. Your staff couldn't tell me because they had lost the doctor's order. So, we began the process again.

The doctor resent his order - your staff called me four (!) days later and we scheduled the cat scan under anesthesia to happen a week and a half later - which was supposed to be today. All the while Ashley's ankle and foot are getting worse, worse to the point that she must now use a wheelchair all the time.

Your staff person responsible for obtaining insurance authorization for Ashley's procedure waited until 3pm yesterday, the day before the procedure was supposed to happen, to contact both insurance companies, companies whose normal business hours end at 5pm. Needless to say, that was not enough time to obtain the authorization, and your staff person called to tell me we would have to cancel the procedure or I would have to pay out of pocket. Given the exorbitant fees your hospital charges, paying out of pocket is not an option, and so the procedure was cancelled.

I have no idea when it will be rescheduled. Your staff person couldn't tell me. What I would like to know from you is what I should tell Ashley.

When she asks why she can't participate in the basketball game at school, what should I say? When she asks why she always has to use her wheelchair, what should my answer be? When she complains about not being able to wear a shoe on her swollen foot, what do you suggest my response should be? And if and when we do get the procedure scheduled, and hopefully find out what is going on with her ankle and foot, what should I say if the answer is not good and the problem should have been addressed sooner?

Your hospital's tag line is "Good help for those in need." Well, we are in need, and there has been no good help. So what now??

Angrily yours,
Ashley's mom

Just Following Instructions

Happy Friday! Have a great weekend!

Thursday, December 6, 2012

Trying Again

Remember about 5 weeks ago, I wrote about Ashley's swollen left ankle and foot? Well, it's still there. The doctor seems to be a little out of his league on this one, but he did schedule a cat scan for tomorrow.

Like all hospital procedures for Ashley, the scan will be done under anesthesia. We are scheduled to arrive at the hospital at 7am, and hopefully all will go smoothly and we will not be there long. I've never been through a cat scan with Ash before, but I really hope they tell me something before we leave the hospital.

When I have to take any of my children to the pediatrician's office for a sick visit, it's anybody's guess which of the 8 doctors we will see. I, of course, have my favorites, but can't always see those doctors. When I took Ashley in back on November 1st, we didn't get paired with one of my favorite doctors. But, until now, we have stuck with the doctor we saw even though, as I mentioned before, he seems a little out of his league with this ailment.

But, during a visit for an ear infection earlier this week when we did see one of the doctors that is most comfortable with Ashley's many and complex special needs, I brought up the subject of her swollen foot. I think the doctor could sense I needed her on this case, and she stepped up to the plate!

She told me to call her if I didn't hear anything while we were still at the hospital. She said she would then call and have an answer for me before the end of the day.

We may not figure all this out with the cat scan, but I am way more comfortable now knowing that doctor #2 is aware of the issue and is willing to step in.

Please keep Ashley in your thoughts and prayers on Friday.

Wednesday, December 5, 2012

Special Exposure Wednesday

Christmas is Ashley's most favorite holiday because of all the lights!

Tuesday, December 4, 2012

Two of My Favorites

Ok, I'm starting to get in the Christmas spirit now! Perhaps it was getting my house decorated - or maybe it was the shopping for presents - or even pouring over cookie recipes - but I'm there now!

Here are two of my favorite Christmas songs that I wanted to share with you. One is more professionally done than the other, but I love them both, especially the way the person in the second video starts to warm up as the song goes on!

Tell me what gets you in the Christmas spirit...

Monday, December 3, 2012

A Grown Up Tree

For so many years, 21 to be exact, our Christmas tree has been decorated with kid-made ornaments, ornaments in bright shades of red and green, and ornaments with faces of Sesame Street characters.

But children are all grown up and it is time for a grown up tree! A tree decorated 'my' way! We haven't finished decorating yet, but it is turning out really great - lots of seashells to coordinate with my beach-themed house, shiny balls of gold and silver, and strings of pearls to represent pirate booty (that was Chip's idea!).

We will still have Santas and reindeer, and cute pictures with Santa from years past. But, for once, the tree is my creation!

Friday, November 30, 2012

The Water of Life

Today is the last day of National Adoption Month. I hope my posts this month have been helpful and informative, but more importantly, I hope they may have led someone to consider adoption.

I want to close the month with my all-time favorite quote about adoption. It is from the Jewish Talmud:

"A mother is likened unto a mountain spring that nourishes the tree at its root;
But one who mothers another’s child is likened unto a water that rises into a cloud and goes a long distance to nourish a lone tree in the desert."

Will you consider providing nourishment for that lone tree????

Thursday, November 29, 2012

Stacey's Story

As National Adoption Month draws to a close, I want to devote one post to a very difficult subject - disruption. Disruption is the word used to describe an adoption failure. Actually, I don't like the word failure, but it usually goes hand in hand with disruption.

I truly don't believe anyone goes into an adoption thinking that if things don't work out, the child can be given back. It's like a marriage. Ask the bride as she is walking down the aisle to meet her groom if she ever thinks she will divorce her beloved, and the answer will be a resounding NO. The same is true for adoption. But sometimes, things just don't work. Fortunately in adoptions, unlike marriages, the not working out is very rare.

Having never lived through or even considered adoption disruption, it's very difficult for me to describe what I think the adoptive parents may feel. But, I know someone who can describe those feelings, and describe them in heartbreaking detail.

Stacey is one of the bravest and smartest people I know. She is completely devoted to her family, and she shares her stories of that devotion as an artist shares her craft. Read this post, and I believe you will understand completely the effect adoption disruption has on everyone involved.

Thank you, Stacey, for having the strength to share your story.

Wednesday, November 28, 2012

Special Exposure Wednesday

What? This isn't how you use your computer?

Tuesday, November 27, 2012

Still a Lot of Firsts

I wrote yesterday that prospective adoptive parents don't have to give up on the 'firsts' of their child's life when adopting a teenager. While they may not be there for the first words, first steps or the first day of kindergarten, adopting a teen provides just as many 'firsts'! Here are some pictures to illustrate my point!

Ronnie's first go-cart!

And his first shave!

And his first girlfriend!

And his first time participating on a sports team!

And yes, even his first steps!

I urge you all to consider sharing the 'firsts' with a teenager in need of a forever family!

Monday, November 26, 2012

What Happens Next?

So far this month, this month I have dedicated to the subject of adoption, I have written primarily about special needs adoption. I know many families are reluctant to consider the adoption of an older child, and specifically teenagers. That’s why there are so many teenagers that wait, and so many that eventually ‘age out’ of the foster care system.

There was a wonderful article in our local newspaper a while back that addressed that very point. The article was tough to read. There were statistics like:

  • Once children in foster care reach age 9, they are less likely to be adopted. Research shows that many of them will face significant obstacles in the future, including homelessness, incarceration, unemployment, depression, substance abuse, and the lack of educational attainment. These outcomes impact all of society, which bears the costs at the local, state, and national level.
  • While their circumstances and backgrounds vary, the demographics of foster care children awaiting adoption have been changing. As of September, 27.8 percent of the children in foster care were between the ages of 16 and 18. Another 16.8 percent were between the ages of 13 and15. Forty percent are African-American, and more than half are male.
  • Every day that a waiting child remains in foster care, his or her chances of being adopted grow dimmer.

These are the facts that break my heart. I imagine a young man, say 17 years old, who has been working really hard to improve himself. He has the support of a group home and probably several organizations to help him along that path to improvement. But he knows his time is running out. Where will he go on his 18th birthday? Will he have to call the streets his home? Who will help keep him safe?

And my mother’s heart has even more questions. Who will tell him Happy Birthday? Who will ask him what he wants for Christmas? How can he look forward to holidays when in his life, holidays are just the same as all the other days?

Parenting a teenager is not for the weak of heart. But parenting a teenager from the foster care system can make your heart grow stronger. Often I hear parents say, “But if I adopt a teenager, I will have missed all the ‘firsts’ in their life – first steps, first words, first day of school.” Check back with me tomorrow and we will talk about ‘firsts’, and how you can still celebrate them with your adopted teenager.

(The young man pictured above is 17 years old and is available for adoption. If you are interested in finding out more about him (his name is Gidd), contact your local social service agency.)

Friday, November 23, 2012


Leftovers – lots of leftovers – turkey, gravy, yams, stuffing, green beans, rolls. One of the best things about Thanksgiving dinner is having leftovers for the next few days. One of my favorites is a hot turkey sandwich – leftover turkey piled high on leftover yeast rolls and then covered in leftover gravy. After a few days, we are driven to get creative with the leftovers, but to me, they are still just as good.

Did you know that a lot of the children in foster care, children waiting for a family to call their own, feel like leftovers? They have watched their friends and sometimes their family members get adopted, but they still wait. The feel like the leftovers that everyone has grown tired of.

But just as we get creative with our Thanksgiving leftovers, we can get creative with the children who wait for a forever family. It’s certainly not going to be easy to bring a teenager into your family, a teenager who has been rejected so many times that he will try to reject you. It’s not easy to bring the group of three siblings home to your quiet, clean house, but trust me, they won’t have much to bring with them to mess up your house. Or the child with significant disabilities that is spending her life in an institutional setting – all she wants, even if she can’t verbalize it, is to wake each morning with the knowledge that she is loved and wanted.

As National Adoption Awareness Month draws to a close, I implore you to examine your lives closely and see if there is any way possible that you can bring home a child who believes he is a leftover that no one wants.

Thursday, November 22, 2012

Thanksgiving Gift

My gift to you all this Thanksgiving is the following short film.

At the height of the Great Depression, the showman of a renowned circus discovers a man without limbs being exploited at a carnival sideshow, but after an intriguing encounter with the showman he becomes driven to hope against everything he has ever believed.

It is family friendly, and a story of belief, hope and inclusion. I hope you all enjoy your day!

Wednesday, November 21, 2012

Special Exposure Wednesday

I am thankful this Thanksgiving Eve that our friendly hawk is back in the neighborhood. Besides being beautiful to observe, he does a very, very good job of culling the squirrel hood. Squirrels are one of my least favorite animals - they eat my spring bulbs, they chew on my fall pumpkins, the sharpen their teeth on my chain link fence, and they even chew the coating off electrical wires. Anything Mr. Hawk can do to lessen the squirrel population is ok by me!

(Thanks to Chip for the beautiful pictures!)

Tuesday, November 20, 2012

Gift Quandry

One of the more difficult things for me during the holidays, and apparently for other families I have heard from who have children with significant disabilities, is deciding on gifts for those children. The yearly debate seems to focus on whether gifts should be chronologically age appropriate or developmentally age appropriate. I’m sorry to say that I don’t have a good answer and debate this issue constantly myself.

Here’s a scenario presented by one family – the family has a 21year old son, I’ll call him Michael, who has Down Syndrome. Michael lives at home with his family, is in his last year of high school, and doesn’t have much of a social life outside his family members and their friends. Michael adores Mickey Mouse cartoons. His family knows he would be very happy to receive Mickey Mouse DVDs as a Christmas gift, but they are reluctant to buy him something that is so chronologically age inappropriate. In past years, they have bought him clothes, DVDs the whole family enjoys, and music CDs to which the whole family would listen. Michael is happy to receive those things, but it wasn’t really what he wanted.

I have the same dilemma with my oldest daughter. Jessica is 21 years old, but cognitively and developmentally is more like 6-7 years old. She loves baby dolls and Barbie dolls. She also likes getting girly clothes as gifts, and she would also like Disney DVD’s. Like Michael’s family, I don’t want to stigmatize her with things her friends and peers would ridicule, but I also would feel bad not giving her a gift that she truly wants.

How have other families handled this issue? What recommendations would you have for families like mine and Michael’s?

Monday, November 19, 2012

Reactive Attachment Disorder

In celebration of National Adoption Month, I will write many things about the joys of adopting, especially adopting from the foster care system. However, adoption from the system does not come without its share of problems. Today I want to address one of the more common problems - Reactive Attachment Disorder.

The Mayo Clinic describes Reactive Attachment Disorder (RAD)as:

Reactive attachment disorder is a rare but serious condition in which infants and young children don't establish healthy bonds with parents or caregivers.

A child with reactive attachment disorder is typically neglected, abused, or moved multiple times from one caregiver to another. Because the child's basic needs for comfort, affection and nurturing aren't met, he or she never establishes loving and caring attachments with others. This may permanently alter the child's growing brain and hurt their ability to establish future relationships.

Reactive attachment disorder is a lifelong condition, but with treatment children can develop more stable and healthy relationships with caregivers and others. Safe and proven treatments for reactive attachment disorder include psychological counseling and parent or caregiver education.

Here is a link to a post I wrote in 2007 about how RAD had personally affected my family.

I know when reading about RAD, many people would ask, "Why in the world would I want to adopt a child like that?" And my answer would be "Because these are the children that most need a loving, secure family in which to heal."

As the Mayo Clinic notes indicate, there is hope for healing for a child with RAD. I know it can happen - I have witnessed it first hand.

Just read my post from May of 2010, and you will understand.

And please, if you are considering adoption of an older child from the foster care system, don't shy away from the children who need you the most. There are resources to help you all become a healthy, loving family, and who doesn't want that?!

Friday, November 16, 2012

Butterfly Heaven

What do you think heaven looks like? My Catholic school upbringing had me believing it was a wondrous place beyond the clouds, its entrance blocked by shiny, huge white gates, a place of wonder and peace, a place I definitely wanted to one day go.

To Dr. Eben Alexander, a Harvard trained neurosurgeon who practices in my area, Heaven is a place filled with beautiful butterflies and a river of colors more vivid than a rainbow. Dr. Alexander reports visiting heaven and remarkably, he has the science to back up that claim.

Check out this link and video, and then let me know your thoughts on what the doctor has to say about Heaven:

Neurosurgeon Claims to have Visited Heaven

Thursday, November 15, 2012

A Teacher Who Inspires

In 1988, Mrs. and Mrs. Bunzl of Richmond, Virginia established the R.E.B. Awards for Teaching Excellence. The awards are designed to recognize public school teachers who have distinguished themselves by their inspiring classroom performance. The program has been developed by The Community Foundation and is funded by the R.E.B. Foundation.

The R.E.B. Foundation believes that a child's educational experience at the elementary, middle, and high school levels should develop basic skills and form positive life-long habits towards learning and discipline. The R.E.B. Foundation is committed to improving public education so as to benefit a broad segment of the community.

The awards are designed to identify, recognize, and support teaching excellence in the metropolitan Richmond public school systems. Grants ranging from $2,000 to $10,000 are given to approximately fifteen teachers to support professional development activities. Recipients are required to share educational ideas and experiences with fellow teachers.

I could think of no better person to receive an award than Ashley's teacher. And the great news - Ashley's teacher, Mrs. Marsh won an award! But, awards or not, Ashley and I are very blessed to have the remarkable Mrs. Marsh in our lives!

Part of the nomination I submitted for her is listed below. And don't forget to check out the link at the bottom of the page to a newspaper story about the awards. That story shows some of the exciting things the winning teachers plan to do with their grants!

"Many people, including some teachers and other school staff, see my daughter, Ashley and assume because of her severe disabilities that she cannot learn. Mrs. Selene Marsh has seen through the disabilities and found a bright, enthusiastic learner, and isn't that what being a great teacher is all about?

Ashley is deafblind, and she doesn't learn like other students. She must experience the world around her with her other senses, and then learn to process those experiences. She must be taught with innovative, think-outside-the-box techniques, and still her learning can be a slow process. Mrs. Marsh understands that and has been the first educator to truly help Ashley reach her full learning potential.

When Ashley moved from middle school to high school and was slated for Mrs. Marsh's class, Mrs. Marsh immediately began her studies into deafblindness to determine the best way to teach and support Ashley. She sought assistance from the Virgnia Deafblind Project, the Department for the Blind and Vision Impaired, and from the one person who knew Ashley better than anyone else - her mother! Mrs. Marsh organized her classroom into a safe environment for a student with deafblindness, and began to accumulate the materials she would need to educate Ashley. And that process continues today even after Ashley has been in her classroom for three years.

But Mrs. Marsh's commitment to teaching excellence didn't stop with learning a few new skills and making her classroom accommodating. She took that commitment even farther by completing a two year program offered by Utah State University titled, "Professional Training Program in Deafblindness." She completed all the classes in that program and demonstrated all of the competencies during her coaching sessions. She also participated in two, full-day trainings with Linda Alsop, the director of Ski*Hi institute, that were follow-ups to the Utah State University coursework. And, because when Selene Marsh commits to something, she REALLY commits to it, she also attended a two-day workshop titled, "Assessment, Communication, & Routines: Building Blocks for Calendar Systems for Children w/ Deaf-Blindness and Multiple Disabilities led by Robbie Blaha from the Texas School for the Blind.

Selene Marsh's greatest asset is that she believes ALL children can learn. She never gives up and she inspires that spirit of fortitude in each and every one of her students. She is the type of teacher that students remember fondly for the rest of their lives, knowing that their successes were fueled in large part by a teacher who cares, who believes and who never, ever gives up. There truly is nothing greater in a student's life than a teacher who inspires, and that teacher is Mrs. Marsh."

16 Teachers Win REB Awards for Excellence - from the Richmond Times Dispatch

Wednesday, November 14, 2012

Special Exposure Wednesday

Someone is really enjoying the cooler weather!!

Monday, November 12, 2012

Naturally Speaking

Aretha Franklin sang “You make me feel like a natural woman…”. Robert Redford revealed his baseball talents in the movie The Natural in 1984. The word natural conjures a picture of innate, special abilities – something that arises easily or spontaneously. One definition in the dictionary states that natural means having or showing feelings, as affection, gratitude, or kindness, considered part of basic human nature. The word natural is a warm, fuzzy word, a word most people would never believe could be harmful or hold hurtful memories. But it can.

In September, at the start of every school year, I must fill out information forms for each of my children. I’ve never understood why the information can’t be stored in a database somewhere and just printed out for verification each year – but that’s a topic for another blog. The thing I find most offensive about the information forms I fill out is the way I must designate my relationship to my children.

After entering my name, I must choose my relationship. The choices are ‘natural mother’, ‘foster mother’, ‘legal guardian’, or other. What happened to just ‘mother’. What I normally do is check ‘natural mother’ for all my children, whether they are birth children or children who joined my family through adoption, and then put a little asterisk that points the reader to the bottom of the page for another note. In that other note at the bottom of the page, I write “Yes, I am a natural mother – knew from the time I was a child myself that I would be a natural mother”.

So, since this is National Adoption Month, and since I really, really don’t like some of the terms I hear used in reference to adoption, today I am sharing positive adoption language. Please take a moment to consider how just a simple change in language can have a major positive effect on a child. Words not only convey facts, they also evoke feelings. When a TV movie talks about a "custody battle" between "real parents" and "other parents," society gets the wrong impression that only birthparents are real parents and that adoptive parents aren’t real parents. Members of society may also wrongly conclude that all adoptions are "battles."

Positive adoption language can stop the spread of misconceptions such as these. By using positive adoption language, we educate others about adoption. We choose emotionally "correct" words over emotionally-laden words. We should speak and write in positive adoption language with the hopes of impacting others so that this language will someday become the norm.

Positive Language (Negative Language):

Birthparent (Real Parent)
Biological Parent (Natural Parent)
Birth child (Own child)
My child (Adopted child)
Born to unmarried parents (Illegitimate)
Terminate parental rights (Give up)
Make an adoption plan (Give away)
To parent (To keep)
Waiting child (Adoptable child; available child)
Biological or birthfather (Real father)
Making contact with (Reunion)
Parent (Adoptive parent)
Intercountry adoption (Foreign adoption)
Adoption triad (Adoption triangle)
Permission to sign a release (Disclosure)
Search (Track down parents)
Child placed for adoption (An unwanted child)
Court termination (Child taken away)
Child with special needs (Handicapped child)
Child from abroad (Foreign child)
Was adopted (Is adopted)

Friday, November 9, 2012

Well, What Do You Know??

I'm sure most parents with children in public schools are familiar with the PTA Reflections contest. The Reflections program encourages students to explore the arts and express themselves by giving positive recognition for their artistic efforts. Since it was founded in 1969 by Mary Lou Anderson, millions of students have benefited from this program.

Up until this year, students with disabilities were required to compete at grade level with their non-disabled peers. So for instance, a child with a significant disability who was listed with the school at a grade level of 9 but who functionally was not at the same level as non-disabled 9th graders, still would have his/her work compared to and graded against those non-disabled peers. Not suprisingly, seldom did a student with disabilities receive the highest recognition. But this year is different.

This year the National PTA has established another artist category call the Special Artist. So, if a student qualifies for special education, that student may enter the Reflections contest with his non-disabled peers or under the Special Artist division. I believe this will open the Reflections contest to a lot more students.

Ashley is one of those students! This year's Reflections theme is "The Magic of a Moment." Ashley entered in the literary category with a poem about her first trip to the beach. It was a very simple poem and included on the page a picture of her experiencing the beach for the first time. Here's that picture which was taken by my brother, Carl of Hampton Roads Photography and what she wrote for her submission:


No See

No Hear

Feel Wind

Feel Water

Taste Salt


Lo and behold, she won the award at her school for Outstanding Interpretation! Her work is now forwarded on to the county level for additional judging, and then to the state, and so on, until she hopefully reaches the National Level.

Regardless of where her art journey ends, I am so very proud of her!!

Thursday, November 8, 2012

Still Swollen

About two and a half weeks ago, I noticed Ashley's right ankle and foot were very swollen. There was no bruising that might indicate an injury, and she didn't seem bothered by it.

Then on November 1st, I told you about our adventures during Hurricane Sandy - our visits to the doctor and ultimately, an ultrasound of Ashley's leg and foot under anesthesia. During that visit, the doctor had also ordered some blood work that would also indicate if any blood clots were present. The blood work was negative.

So, the good news is that we haven't discovered any potentially life-threatening blood clots. The bad news is her ankle and foot are still very swollen.

After discussions again this week with the doctor, Ashley is now going to have an MRI under anesthesia to see if anything else looks strange on her leg. I sort of feel like everyone is just grasping at straws and doesn't really have any good ideas as to what is causing the swelling. Perhaps the testing is the prudent course, but I am worried that it is something sinister and something that needs to be dealt with asap. Of course, that is more than likely my normal mother-worrying.

We don't have a date for the MRI yet. I am still waiting to hear from the hospital, but hopefully it won't take too long.

Have any of you experienced any similar swelling? If so, what was the cause? I am avoiding Dr. Google completely because I am afraid I will read something that scares me even more than I already am.

(The picture above is not Ashley's foot, but her foot looks just like that.)

Wednesday, November 7, 2012

Jenny Hatch

I am not posting a Special Exposure Wednesday shot today because there is a very important issue that I want to tell you about. But since I don't feel I can do it justice, I would like you to visit this post by Rachel Cohen-Rottenberg.

What you read should frighten you as much as it does me, especially if you have a family member like Jenny. This is happening in my state, with organizations I also deal with. The power that some people have scares me more than I can put into words.

After you read the story, please consider signing the petition referenced in the post.

Tuesday, November 6, 2012

You Don't Have To Be Perfect

As I mentioned last week, November is National Adoption Month. One of the things I hear from a lot of people is that they don't think they have what it takes to be an adoptive parent. I always say, "Trust me, you do not have to be perfect to be the perfect parent!"

I got that response from the following videos. Please take a moment to look at them. They are very short and very funny!

Monday, November 5, 2012

Any News?

For a week now, I have been watching how Hurricane Sandy devastated New York and New Jersey. In some areas, a lot of areas actually, the scenes look right out of a war zone. People's lives are have been changed forever. They've lost everything - homes, personal belongings, and in one mother's case, her two young sons.

I wish I could completely understand the depth of their pain, but I know I can't. We've faced some weather disasters here also, but nothing to even compare to what happened in the Northeast.

But I have had another thought, one for which I have heard no news reports, no newspaper stories, nothing. What about the people with disabilities?

Surely in the large area that was severely impacted by the storm there would be people with disabilities, some even with severe disabilities, living there. What has happened to them?

Were they all prepared? Did they get out of town before the storm hit? If not, how are they coping with no electricity, no food, no gas, no heat? And why hasn't anyone asked these questions publicly?

What about the parents of children with Autism? Or the parents of a child or children in wheelchairs, dependent on feeding tubes and/or trachs? How are they surviving if they are stranded in the worst hit areas? How are they explaining to their children what is happening?

All these thoughts have reinforced in my mind the need to be prepared. But I want to know what happened to the people with disabilities in New York and New Jersey. Has anyone heard anything?

Friday, November 2, 2012

National Adoption Month

"A mother is likened unto a mountain spring that nourishes the tree at its root. But one who mothers another's child is likened unto a water that rises into a cloud and goes a long distance to nourish a lone tree in the desert."
The Talmud

Any of you who have been long time readers of this blog know beyond a shadow of a doubt how wonderfully adoption has touched my life. Although in my early twenties I had absolutely no vision of a house full of children, now I can't imagine my life without them, and maybe more.

November is National Adoption Month, and many of my posts this month will explore that subject. I'll take a look at the good, the not so good, the easy and the difficult. I'll explore the many facets of adoption, and I will share some amazing stories.

Even if you are not starting this month with any thought that adoption will one day touch your life, I ask that you still read my posts. Perhaps if not you, a family member, a co-worker or a close friend will consider adoption, and you will be able to understand and maybe even help them as they progress through their journey of finding a new addition to their family.

18 years ago, I was led down a path about which I had no understanding. I just knew that I needed to follow that leading. Again this month I feel led to dedicate this month to adoption. The first leading changed my life in glorious ways. Maybe, just maybe my posts this month will reveal a leading and a glorious change for your life!

Thursday, November 1, 2012

Wind and Rain but No Blood Clot

Although the warnings about Hurricane Sandy were dire for Virginia, we dodged a bullet. We had rain and wind, but nothing more than you would expect out of a good, old-fashioned storm. This one just lasted a while longer.

Monday had been forecast to be the worst of the storm days, and of course, that would be the day that Ashley and I had to do the most traveling around in it.

For a week now, Ashley's right ankle and foot have been very swollen. There's no bruising, and it doesn't appear to bother her, so I don't think it is an injury. But because I didn't know what it was, we visited her pediatrician Monday morning. He was a little baffled also, but suspected it could be a blood clot. If that were the case, it would instantly be an emergency situation. He sent us to the imaging facility next to his office with a script to get a venous ultrasound done.

So, we moved out into the storm and walked across the parking lot as my umbrella decided to flip itself inside out. The winds were just too high for an umbrella, but I didn't want either Ash or myself to get totally drenched. Too late...

We registered at the imaging facility and had just shaken the water off our coats when the receptionist walked over to tell me that they could not do the procedure - it had to be done at the hospital. She kindly gave me the number to the hospital and showed me to a phone I could use. Because everyone involved was assuming this was an emergency, we were told to drive immediately to the hospital cardiovascular lab.

So we left the imaging facility with a broken umbrella and clothes that were still damp, and headed out into the pouring rain again. I walked briskly across the parking lot as I pushed Ashley in her wheelchair. I got her into the car, and then wrestled her wheelchair into the trunk. Now we were more than damp.

We drove to the hospital, unloaded the wheelchair, and dashed into the hospital and headed to registration. At this point, I was feeling bad for the person who might sit in the chair that I had used because it was now soaking wet.

We headed back to the cardiovascular lab, and instantly I knew things were not going to go smoothly. One thing to keep in mind is that this was one of the few hospitals in our area that we had NEVER been to.

Ashley looked into the room where the ultrasound would be done, immediately locked her legs, dug her heels into the floor, and stiffened in her chair. She was NOT going into that room. The tech, an attractive young man, seemed to not notice her behavior, and told me to bring her in, get her on the stretcher and remove her pants. I laughed - perhaps just a bit hysterically.

I went through my whole speech - the speech I would not have had to give had we been at the hospital we normally frequent. I could tell he just wasn't grasping the situation because he kept talking on the phone to someone and saying, "Her mother won't do it."

Finally, I think I began to make him understand when I told him that for all other procedures in a hospital, they were done under anesthesia. If he required a child to be still, not fight, and not require at least three burly men to hold her down, we were going to have to do the test under anesthesia. Somehow, he and person to whom he was talking on the phone, decided they could probably make that happen. I was to go to the OR and see the anesthesia doctor.

But, here's where we had another little problem. Ashley was already an hour past the time of her noon seizure med dose, and she had eaten breakfast that morning.

So we moved to plan B. We were to go home, take the seizure med, and not have anything else to eat or drink until 3pm at which time we were to come back for the procedure under anesthesia.

It was out into the storm again. I drove home, administered Ash's seizure meds, and tried to keep her occupied and not asking for lunch.

We left home at 2:30 - back into the wind and rain - and arrived at the hospital at 3pm. They were ready for us. We went through the whole fill out the necessary forms thing again, all the while trying to keep Ashley calm because WE WERE IN THE OPERATING ROOM. It was a battle I was losing.

Fortunately, the staff and the doctor listened to me, and with the help of two large men and three small nurses, the anesthesioligist placed the mask over Ashley's face while she was still in her wheelchair, and she drifted off to sleep. Then they moved her to the stretcher and started her IV.

The test was over in about 20 minutes. They moved her back to her chair while she was still asleep, and slowly helped her wake up. All in all, I think a great deal of fighting was reduced by that maneuver.

Ashley woke up soon after with no issues, and we left to go back into the rain and wind, but this time to go home and stay home.

The pediatrician called a couple of hours later to tell me that the test did not show a clot. He was going to have to research and call me back. I haven't heard back from him yet.

Ash's ankle and foot are still swollen. She still doesn't seem bothered by it, and our clothes from Monday are almost dry.

Wednesday, October 31, 2012

Special Exposure Wednesday

Last week, the basketball team from Benedictine High School came to the Sportable Spokes wheelchair basketball practice. It was such fun to see the tall, long-legged Benedictine boys try to fold themselves into the wheelchairs. It was also great to see the Spokes players show off a bit!

Monday, October 29, 2012


We've spent the last couple of days battening down the hatches and stocking up on water. Hurricane Sandy is on its way. We're already getting some rain and high winds (65+ mph) are expected in just a few hours. Hopefully before that arrives, I can get Ashley to the doctor's office..

Everyone on the East coast stay safe, and everyone else, please keep us in your prayers!

I'll be back to regular blogging soon!

Friday, October 26, 2012

The List That Shouldn't Exist

The IEP meeting that I requested to discuss accommodations which could be made to ensure Ashley no longer gets injured at school was held this week. I am not quite ready to write about the entire meeting, but I did want to show you something that I shared at the meeting.

I wanted to make sure that the IEP team members understood that the most current injury to Ashley's arm was ANOTHER example of the injuries that Ash has sustained at school - not the ONLY injury. I felt it was important to put into perspective the sum of injuries at school and then contrast that to the sum of injuries outside of school. So I presented this list of all the significant injuries Ashley has had since starting school at age 3. I did not include the fingertip bruises that have become commonplace from adults trying to move or reposition Ashley. Here is the list:

Significant injuries sustained by Ashley Nickerson during her school years from Preschool to Eleventh grade
Prepared October 24, 2012

While walking the school hallway with the principal, Ashley fell up a flight of steps. It was believed she broke her nose. The rescue squad was called and she was transported to the hospital emergency room. Fortunately her nose was not broken, but badly bruised. She had two black eyes for several weeks.


Ashley tripped in the classroom on the edge of a rug which had been placed over the classroom carpet. She fell into the edge of a table. Again she was transported to the ER. The doctor suspected she might have broken her eye socket bone (good eye) and immediately ordered a cat scan. Again thankfully, the bone was not broken, but she was badly bruised and again had a black eye.

First grade:

Ashley tripped while walking in the school hallway with her aide. She required two stitches in her upper lip as a result of the fall.

Second grade:

Ashley broke her two front teeth while riding the bus to school. She had to have both teeth capped as a result. Although I requested a copy of the video tape from the bus, my request was denied.

Three months after Ashley initially broke her two front teeth on the bus, she broke one of them again, also on the bus. Again, I was refused access to the videotape.

Third grade:

Ashley arrived home from school without her G-tube. I was told by the teacher and school administration that it absolutely could not have happened at school. Ashley had to be taken to the ER to have a new tube inserted. The next day, the original G-tube was found on the school playground.

Seventh grade:

I received a call from school that Ashley’s G-tube was found in her shirt (pulled out of her stoma). Again she was transported from school to the ER in an ambulance. The tube had been out all day and as a result the stoma had begun to close. The doctor was required to perform outpatient surgery to get it re-inserted.

2012 ESY Services:

Ashley arrived home with an abrasion about the size of an egg on the inside upper part of her right arm. It was bleeding slightly and blood had stained the shirt she was wearing. No note or phone call was received from school telling me what had happened. I purposely did not send a note the next day asking what had happened, but I did receive a phone call later that morning telling me that Ashley had just scraped her arm on the slide. I responded that the injury was present the prior day, and the only response was ‘oh’.

Eleventh grade:

Ashley’s arm was injured. The injury required two visits to the pediatrician, one to an orthopedist, one set of xrays, and a second attempt at xrays. According to school, “The investigators were unable to ascertain how the injury was sustained or what caused it. “

Thursday, October 25, 2012

"Dance Is Like Thought"

My brother shared this remarkable article with me. It's the story, told both in words and pictures, of Helen Keller visiting Martha Graham's dance studio in 1954.

I could so easily pluck Ashley into those pictures along side Ms. Keller. I really wish that there were dance teachers today who would provide a similar opportunity for our deafblind children.

Be sure not to miss the video at the end of the article.

Wednesday, October 24, 2012

Special Exposure Wednesday

I really, really don't like squirrels. Now they are eating the gourds that I have on my front porch. They're just rats with fluffy tails and they need to go live on their own island far, far away.

Tuesday, October 23, 2012

Transition For Us Both

I mentioned a while back that Ashley had after a 10 year wait finally gotten a 'slot' on our state's Medicaid developmental disability waiver. That slot means she has access to more services, one of which is day support. While day support is not a necessity right now while Ashley is in school, it will be a great addition to her life when school ends. At least I hope that is true.

Day support is a place where adults with developmental disabilities spend their days. While it really irks me that such programs are a return to segregation, until we begin to see some real systems change in the US, day support programs do mean that the adults will not just sit home all day and all night. What I really hope is that I can find a good day support program and Ashley will not just trade sitting at home for sitting in a facility during the day.

So that I can begin to figure out how day support might be a service Ashley can use, I visited several of the programs in our area. Unfortunately, there are not a lot of such programs, and most of them are not good. But I was able to find one that I was happy with.

Unlike most of the facilities used by day support programs, A Grace Place was bright and cheery. The staff was friendly and seemed genuinely interested in their clients (I hate that term....). It seemed as if a lot of thought had gone into structuring the program to meet the needs of people with varying degrees of need. And, there appeared to be a real committment to integrating the 'clients' into the community in one way or another.

So, I could live with a place like A Grace Place, and I believe Ashley would enjoy spending some portion of her day there. But, there was one thing that bothered me, and it had nothing to do with the actual program, facilities or staff.

Every 'client' at A Grace Place is an adult. No one under the age of 18 is accepted into the program. I understand that and realize that the need for such programs exists for adults as well as children. My problem was personal - accepting that my sweet Ashley was soon to be an adult...

Her peers will no longer be the students at her school. Her peers will be people in their 20's, 30's, 40's, 50's and above. I'm not living in denial about Ashley growing up, but that doesn't mean I am happy to see the childhood years end. I want her to grow into the beautiful woman I know she will be, but a part of my heart longs for the sweet child that has graced my life for the past almost 16 years.

Perhaps the most difficult transition in all this will not be Ashley moving from school to adulthood, but rather mine for saying goodbye to the child and hello to the young adult.

Monday, October 22, 2012

Failing Our Moral Test

When the United States Senate dedicated a building to former U.S. Senator Hubert Humphrey he remarked:

"...the moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; those who are in the shadows of life; the sick, the needy and the handicapped. "

Last Speech of Hubert H. Humphrey
November 1, 1977
Washington, D.C.

If government includes our school systems, then we are flunking our moral test miserably.

Besides the issue with Ashley's arm injury (and she has had a LOT more injuries on school property that I will detail in a later post), this weekend I read two more stories from less than 100 miles from my home about children injured significantly at school.

The first was a 10 year old girl from Chesapeake, Va who had her hand forcefully removed from her desk. The child's hand caught on a notebook and was cut. At least in this case, the teacher was charged with assault.

The second, and even scarier, event occurred in Hampton, Va. A young teen girl with special needs arrived home with her leg broken in two places. Surgery, recovery and an infection kept the girl in the hospital for three weeks. The girl's mother is convinced the injury happened on the school bus, but the girl is unable to talk due to her disabilities. The school district's response? There is no evidence on the bus videotape of the girl being injured. Sounds suspiciously like Ashley's mysterious injury...

Friday, October 19, 2012

The "Investigation" is Complete

The investigation (and I use that term loosely) is complete and my school district has provided me with their results concerning Ashley's injury at school.

I'm sure you will be just as impressed as I was....

From the school principal:

"Human Resources has concluded their investigation. After a very thorough investigation where numerous teachers, aides, and staff members were interviewed, no conclusive evidence was found linking the injury sustained by your daughter to the Aide that was working with her. The investigators were unable to ascertain how the injury was sustained or what caused it. I sincerely wish that there was more information available as to what caused your daughter’s injury, as I understand your need to know how this happened. A report was filed with Child Protective Services, but they have not shared any results or whether they conducted an investigation with the school.

The aide that was working with your daughter has not been on the Tucker campus since the incident was reported to the administration.

If I can be of further assistance, please do not hesitate to contact me."

I immediately responded with a request for an IEP meeting (scheduled for next Wednesday), and have put in a call to my attorney.

The fat lady has not yet finished singing....

Thursday, October 18, 2012

Tomorrow's The Day - maybe

Do you remember me writing about Ashley being injured at school by a school employee? Yea, it was a while ago - September 17th to be exact. A full month ago.

I also provided a few updates along the way, but still have not gotten much information from the school district. Whenever I would email or call, the answer was the same, "We're conducting a thorough investigation", and "We can't share anything because it is a personnel matter."

I've continued to push for answers and finally this week was told by the school principal that the 'investigation' would be finished by Friday of this week. The principal assured me that he would contact me by the end of the day Friday.

We'll see...but trust me, you all will be some of the first to hear the results!

Today is Thursday - come back late tomorrow and we'll see if the 'results of the investigation' are an adequate explanation.

Wednesday, October 17, 2012

Special Exposure Wednesday

Ronnie spent last weekend at a wheelchair basket ball camp run by the coach of the paralympic wheelchair basketball team. He got some great pointers for improving his game!

Tuesday, October 16, 2012

Homecoming King

This is a nice story, but wouldn't it be even nicer if inclusion was such a common fact of life that a story like this didn't make the national news?

Visit for breaking news, world news, and news about the economy

Doctors Who Understand

I've been so pleased recently to find doctors who understand the challenges of getting a child with significant special needs to an appointment.

They are the doctors whose staff asks if you would like the first appointment of the morning or the first appointment after lunch break for your child who doesn't handle waiting very well.

They are the doctor's whose offices have automatic opening doors for the parents who are pushing a large wheelchair, carrying things, and sometimes holding the hand of another child.

They are the doctor's staff who offer to hold something, to help push a wheelchair.

They are the doctors who speak to your child even if your child doesn't see, hear or speak.

They are the doctors with a light touch, a soft word, an encouragement. Doctors who don't lie about something hurting, but who comfort after the hurt.

They are the doctors who let you mail in your co-payment rather than digging through a bag while holding a chair, another child, and maybe even suctioning a child. They are also the doctors whose staff will offer to fill out forms for you instead of handing you a clipboard and a pen.

They are the nurses who don't mind putting pressure over a bleed no matter how long it takes rather than insisting on a bandage that your child will pull off in under 10 seconds.

They are the doctors who will accept your typed list of medications, prior surgeries, and medical history and not forcing you to enter the same information on their forms.

They are the doctors whose offices have a quiet room for your child that gets upset if there is too much stimulation in the regular waiting area.

They are the doctors who will electronically send a prescription to your pharmacy or at the very least, call it in so you don't have to keep up with the paper script and so the medication will be ready when you arrive at the pharmacy.

They are the doctor's receptionists that remember your child's name and say hello everytime you walk in, not just demand to see your insurance card.

They are doctors, nurses, and staff who "get it", and I am so grateful when I find people like that.

What about you? What makes your doctor visits better for both you and your child?

Monday, October 15, 2012

Never Ever Doubt

This post is dedicated to my dear friend, Lynnette, and her beautiful daughter, Brooke.

If you think I am going to go away quietly, you are so wrong. If you think you can wait me out, again you are wrong.

By now you should realize that I will do absolutely anything to ensure my daughter's rights are not ignored. You may think you know her, and maybe you do a tiny little bit. But you have no idea of the true and complete person my daughter is.

You've never held her as she struggled for breath or was burning with fever. You've never seen the fear in her eyes as the doctor takes her away for surgery. You've never experienced the love in her eyes at a trusting touch. You've never heard her laugh, her deep belly laugh, when the dog licks her face. You've never seen her flutter her eyelids when a cute boy walks by, or seen the distress brought on by seizure after seizure. You've never really experienced how her whole face lights up when she finally understands a concept she was being taught.

You are her teacher in title but not in action.

If my daughter learns anything from you, it would be the following:
  • Adults lie
  • Adults drink alcohol and then tell their students that they are the reason
  • Teachers don't always like teaching nor do they always like their students
  • Teachers can be rude and sneaky

What you may not understand or choose to accept is that I am a teacher also. I teach children just like my daughter all the time. I take my job very seriously, and I want all my students to know they are respected and loved and that I have high expectations for them. I will try hundreds of different approaches to find the one best way to teach a particular student.

Why? Because I believe in them. I want to see their faces light up. I want them to know they matter.

My daughter deserves no less. If you refuse to be the type of teacher she needs, just step aside.

I will win this battle. I have right on my side. Never, ever doubt that.

Friday, October 12, 2012

Happy Friday, Everyone!

Ashley made a model of our state (Virginia) out of her lego blocks! She's so talented!

Thursday, October 11, 2012


I decided I needed some ASL music today. Here is a great video, although ASL purists may disagree with the artistic license taken by the group.

Wednesday, October 10, 2012

Special Exposure Wednesday

Take that, you mean old witch! You hurt my arm - I'll hurt your nose!

Tuesday, October 9, 2012

Damage Done

I was finally able to get Ashley's blood work done this morning - just in time for the neurologist's visit this afternoon. Ever since the school staff person injured her Ashley's arm, Ashley would freak out if anyone touched her. And of course to get blood drawn, someone has to hold her arm, put the blue tourniquet on her, and then stick her with a needle.

Before the arm injury, she was very good about getting blood work done. She would hold her arm out, point to the back of her hand indicating that's where she wanted to be stuck, and would then point out the color of her veins and the blood that was coming out. When the draw was finished, she would always sign to the technician, "good work."

Though today wasn't as bad as the previous two times I had tried to get it done post-injury, she was still hesitant. And that indicates to me that her sense of trust has really been damaged.

This is one of the things that drives me crazy about having to have so many people in the lives of our children with special needs. As parents, we rely on and truly hope that all the adults that move in and out of our childrens' lives are worthy of our trust, and more important, our child's trust. For the most part in Ashley's life, that has been the case. But often it hasn't.

And this injury inflicted by a staff person - a person who has been by Ashley's side for several years - a person she trusted completely - has really hurt her, and I don't mean just physically. I'm really not sure if the emotional damage can be fully repaired. I hope with time, and with a lot of trustworthy, caring adults in her life, that it can. But I just don't know...

And equally as distressing as Ashley's loss of trust is my realization that I cannot always keep her safe. No matter how close I stay near her - no matter how involved I am in her education - no matter how OCD I get about her care, there will always be those times when I cannot be there.

I told her when I adopted her that I would keep her safe always. I lied, though I didn't realize or fully accept that it was a lie at that point. I can't always keep her safe. I can't always be there. And that breaks my heart...

Monday, October 8, 2012

Deadline Missed

I had it all planned. Friday was the start of a three day weekend for me, and the contractor had told me that Ashley's and Ronnie's room would be finished, and back to pre-water leak condition. I would have three days to get furniture moved back into the rooms, furniture moved back into place in the rest of the house, and the mountain of supplies that kept coming regardless of the fact that I had no where to store them finally put away.

But no - that was not meant to be.

The painter was here until 6:30pm Friday night. When he called it a day, none of the molding had been painted, and the closet shelves and bar had not been installed. The next day, in the bright sunlight, I also noticed that another coat of paint will be needed in Ashley's room, and something that still amazes me, the painter had not removed any nails or outlet covers - just painted right over them! I'm no painter but even I know better than that.

So, I've left two emails for the contractor, and I'll see what he has to say.

To say that I am extremely disappointed is an understatement. And, I will have to wait another week to get the house back the way that I want it. Ashley is never going to want to leave my room, and Ronnie has enjoyed having a TV and game system in the guest room in which he has had to stay, and will probably try to convince me not to move him back.

I'm just really tired of this whole situation, and want our normal, crazy life back.

Thursday, October 4, 2012

Quiz Time

How would you react/handle this situation? You are in a meeting with your boss and most of your coworkers. Your boss keeps saying things like, "That's so ______." Fill in the blank with the denigrating word of your choice - a word that is used to characterize a group of individuals, a word that would be taken as derogatory, a word that is construed as politically incorrect by many, a word that often takes root in teenager slang.

I can think of several words to fit, and you probably can also. So just pick one and then tell me what, if anything, you would do in that particular situation.

Wednesday, October 3, 2012

Special Exposure Wednesday

Ashley is checking out the work on her room - work required because our AC unit in the attic had a water leak that destroyed walls, ceilings and closets. We're getting close to getting things back together - THANK GOD!!

Tuesday, October 2, 2012


Do you monitor your child's texting and computer use? If so, and if you have ever found anything objectionable, what was your reaction?

One of the conditions for my children (now all teenagers) of having a smart phone and a Facebook account was that everything would be subject to my scrutiny. I can at any time review Facebook posts and friend lists, and can check out any text message or pictures taken/received on the phone.

When I listed the rules for Ronnie, he didn't seem overly concerned with any of them. But perhaps with the passage of time, he has forgotten that unannounced searches could happen because this morning I found something very objectionable on his phone.

He had sent a text to a girl in his class, and the text included language that is unacceptable and a request for a picture, a picture that would also be unacceptable. Sadly, the girl would more than likely comply with his request.

Ronnie and I discussed why the message was inappropriate (although I think he already knew why), and I told him that he would not be able to use his phone for three days. And, if I ever find anything similar on his phone or computer again, I told him he would lose the device permanently.

Ronnie is a champion pouter, so I am sure that is the face that will greet me each day until he gets the phone back. He's not a bad kid, and he is probably just testing the waters of life. But, he's got to learn what is acceptable and what isn't. And better to learn that at home than to have the school discover the messages, or worse.

Have any of you had to address the issue of sexting or inappropriate emailing and sharing of pictures? If so, what has your response been?

Monday, October 1, 2012

Sports Weekend

Ronnie spent the weekend trying out two new sports - wheelchair fencing and wheelchair rugby. He liked fencing but rugby won his heart. And why wouldn't it - it involved chasing a ball and ramming wheelchairs into other wheelchairs! Make sure not to miss the videos at the end of this post. (And a big thanks to Chip for the pictures and the video!)