Saturday, September 29, 2007

Why is the Word "Retard" Still OK?

Soeren Palumbo is a senior honors student at Fremd High School in Palatine, Illinois, and big brother to Olivia. During Writer's Week (in March 2007), he gave the following speech to a gymnasium full of his high school peers and faculty and received a standing ovation. It's well worth the read...

Soeren's Speech

Power to the Pies

Today provided a very nice exclamation point to the end of a hectic week. The kids, Amy and I headed to Carter Mountain Orchard to pick some apples and enjoy the great weather. We had our fill of warm apple doughnuts and apple slushees, and headed home with a half bushel of Red Delicious apples, a half bushel of Golden Delicious apples, several pumpkins, and a few gourds.

Let the apple pie making commence!

Thursday, September 27, 2007

Thankful Thursday

It's been quite a week - really high highs followed by really low lows. Let's see if I can find ten things for which I am thankful...

  • At the very top of the list - Ashley doesn't have to have brain surgery right now

  • That Ashley slept all night last night. I can't remember a night like that since the day I adopted her over 10 years ago

  • That Dancing With The Stars is back on TV

  • The really good hamburgers I made for dinner tonight

  • That the bus problem experienced yesterday was solved today

  • That this Saturday we're going apple picking

  • Dr. Ted Williams, Ashley's gastroenterologist, and the fact that he was available on very short notice yesterday

  • Henrico County Fire Fighters - they came to Ashley's rescue once again yesterday after an incident at school, transporting her to the ER, and keeping her calm and happy the whole way there

  • Shoe shops that can repair a favorite pair of shoes and not charge a fortune in the process

  • My son, Chip. Each day brings another facet to this special kid and his many talents.

Your Mission, Should You Choose to Accept It...

I decided that it might be fun to check out the mission statements of some of the larger school districts around my state. I checked Henrico County, Chesterfield County, Richmond City, Charles City County, Hanover County, Goochland County, Powhatan County, and New Kent County. I also took a stroll eastward in my state to check out Virginia Beach City Schools, and Norfolk City Schools. And finally, I searched for a mission statement from the Virginia Department of Education. Listed below are my findings. Any text in red is either a comment from me or a highlighting of a school district statement I find particularly interesting. My next research project will involve finding some sort of measure as to whether or not the school districts met their missions. And, if there is any parent who thinks their school districts have, I have a some wonderful ocean front property in Arizona I would like you to see.

Henrico County Schools
Mission Statement
In Henrico County Public Schools, we believe that:
• we can teach every child
every child can learn
• knowledge is power
• student success requires a shared responsibility by students, teachers,
parents, and community
every child deserves respect
every child is unique and has a right to be
every child can contribute to society
• children will meet our expectations
• given the knowledge and opportunity, children can shape their own futures
• the process of schooling must change to be effective in the 21st century

The mission of Henrico County Public Schools is to provide a nationally
recognized educational program and staff to develop 21st-century citizens
who can achieve full development of their potential and, as critical
thinkers and lifelong learners, exhibit through their character and values a
commitment to their community and the nation, as well as personal integrity
which will enable them to meet the challenges of change.

Chesterfield County Schools
Vision Statement:

In 2012, we envision that every Chesterfield school will be a thriving, dynamic and inspiring educational environment that produces self-directed learners and stimulates citizens of all ages to trust in, invest in, and benefit from public education.

Mission Statement:
The mission of the CCPS is to work in partnership with students, families and the community to ensure that each student acquires the knowledge, skills and core values necessary to achieve personal success and to enrich the community.

Hanover County Schools (I couldn’t find a mission statement online for this school district. That could mean one does not exist, or it is just not posted online.) The following quote is on the bottom of every one of their web pages, however.

"Hanover County Public Schools is a student-centered, community driven school district that assures a quality education for success in a changing world."

Richmond City Schools (Again, I couldn’t find a mission statement online for this school district. That could mean one does not exist, or it is just not posted online.) The following quote is on the top of every one of their web pages, however.

Richmond “The Capital Choice in Education” (As long as you are not a school board member trying to remember where your office is this week.)

Goochland County Schools (Again, I couldn’t find a mission statement online for this school district. That could mean one does not exist, or it is just not posted online.) The following quote is on the top of every one of their web pages, however.

Goochland “Working Together for a Quality Education”

Powhatan County Schools – I couldn’t find a mission statement. And, there was no catchy little quote posted on any of their web pages.

Charles City County Public Schools (Again, I couldn’t find a mission statement online for this school district. That could mean one does not exist, or it is just not posted online.)

The following quote is on the top of every one of their web pages, however. – “Demanding excellence because we care

New Kent County Public Schools - I couldn’t find a mission statement. And, there was no catchy little quote posted on any of their web pages.

Norfolk City Schools

There was nothing labeled as their mission statement, but the following is posted on every web page:

“On the journey to world class” Norfolk Public Schools offers a rich and rigourous learning environment where all children can reach their full potential as citizens and leaders. We create a safe place where students experience nurturing relationships, and want to learn.

Virginia Beach City Schools

Mission Statement
The mission of the Virginia Beach City Public Schools, in partnership with our entire community, is to ensure that each student is empowered with the knowledge and skills necessary to meet the Challenges of the future.

Goal Areas
The School Board has established a framework for the future of our schools. There are seven goal areas:
1. Expanded Instructional Opportunities Through Data Driven Curriculum
2. Safe Schools and Effective, Well-Disciplined Environment
3. Effective, Efficient Use of Resources to Create Quality Educational Opportunities
4. Technology Integrated into Our Curriculum and Instruction
5. Recognition of Our Diversity - Respect for All People
6. Quality Work Force: Trained and Accountable for Performance
7. Meaningful Involvement of Community, Parents, and Partners

Virginia Department of Education

The mission of the Department of Education is to lead and facilitate the development and implementation of a quality public education system that meets the needs of students and assists them in becoming educated, productive, and responsible citizens. (At least they don't say "meet the needs of ALL students".)

The vision of the Department of Education, in cooperation with the Board of Education, local school boards, and other partners, is to create an excellent statewide system of public education that equips all students with the knowledge and skills to excel in postsecondary education and careers and to become capable, responsible, and self-reliant citizens. (Oops, they slipped up and said ALL STUDENTS here!)

Wednesday, September 26, 2007

School Bus Drivers Gone Wild

No, they didn’t pull up their uniform shirts to reveal their bare breasts or display their beer chugging skills. But what they have done is every bit as bizarre. Each of the three incidents listed below happened in my school district over the course of 32 hours.

Yesterday, a middle school bus driver rammed into the back of a car stopped at an intersection. This happened in broad daylight on the morning bus run. Several people in the car were hurt and were transported to the hospital. Fortunately, none of the children on the bus were hurt. The bus driver was charged by the police with reckless driving, so while we don’t know the whole story, it’s probably a safe bet that the bus driver was at fault.

Also yesterday morning, a bus delivering a child to my daughter’s middle school, pulled into the bus lane at the school, told the student to get off the bus, and then pulled away. Doesn’t sound too unusual until you find out that the bus was a ‘special’ transportation bus, and the student is diagnosed with autism – not mild autism either. This is not a student who speaks and one who seems to ‘hold it together’ best when life is safe and predictable. Needless to say, this student did not ‘hold it together’ yesterday morning. Now in this particular case, I do have to wonder where the teacher and aide who are supposed to meet the bus each morning were. So, while the blame for creating a bad situation for a student with special needs can be spread around, the bus driver absolutely should not have driven off and left the child standing alone.

And then this afternoon, I got to experience one of these rogue bus events first hand. My daughter’s aide was not available to meet her school bus this afternoon. I left work early so I could be home to meet the bus. Right on time, the bus (a short bus, by the way) came roaring up my subdivision street, and then with its brakes squealing, it came to a stop in front of my driveway. As some of my readers may know, my first career was as a police officer. Were I still in law enforcement, that bus driver would have gotten a summons for speeding.

The driver opened the bus doors, and both the driver and the aide stayed in their seats and said nothing. Since I have been chastised in the past for being a parent and getting on the school bus, I just stood at the door, also not saying anything. I guess the aide got uncomfortable with the silence, or else the spirits of bus aides past told her to get her lazy posterior in gear, because she stood up and handed me my daughter’s backpack and white cane. I stood there holding both things and waited for the aide to assist my daughter off the bus. Silly me….

Again the aide and driver did nothing. Finally the aide was again moved by the spirits and stood up, went to stand next to my daughter and…well, that was it. She just stood there. Since my daughter is deafblind, she probably didn’t even realize the aide was there. Finally the aide reached down and started pulling on my daughter’s arms, which caused my daughter to just resist. Finally, I suggested the aide speak loudly and tell my daughter that ‘Mom’ was waiting for her. The aide ignored my suggestion and instead reached to my daughter’s leg and tried to get her to turn out toward the bus aisle. I couldn’t stand it any longer. I got on the bus, signed to my daughter that it was time to go in our home, and immediately she started to stand.

I did notice that my daughter had a bit of a glazed look in her eye, and that she was a little unsteady. I asked ‘Did she have a seizure?’ The aide answered with “She ain’t had no seizure.” In a less than polite tone of voice, I asked if the aide knew what my daughter’s seizures looked like (seizures can look very, very different from person to person). Again the aide said “She ain’t had no seizure on the bus!” Okey dokey then. I took that as my cue to just leave.

Did someone put a crazy chemical in the bus exhaust system? Did the bus drivers and aides meet for a little spiked coffee before the morning bus runs? Is my school district so desperate for bus drivers that one need only be breathing to qualify for this job of ensuring the safety of thousands of students each school day? I don’t know the answer, but I just hope that the drivers and aides don’t start ripping their shirts off tomorrow morning.

Tuesday, September 25, 2007

All My Children

A major network soap opera has decided to include a storyline about a deaf toddler. Although I am not a viewer of All My Children, I applaud their writers and producers for undertaking this educational and inclusive approach. Read what inspired this story:

Major Soap Opera Includes Storyline on Deafness

A Very Good Day

Today is a very good day. Today Ashley saw her neurosurgeon, and he has decided to not do brain surgery right now.

Ashley was diagnosed with two brain tumors this past June. Her seizures, which had been controlled for years with medication, began coming at an alarming rate. The neurologist prescribed higher doses of medication and added in additional meds, but still the seizures didn’t stop. He then ordered an MRI, and that is how the tumors were identified.

Last week, three months after the first MRI, Ashley had another one. This new MRI revealed three tumors, not two, but also showed that the two identified in June had not grown at all. The neurosurgeon feels the third tumor was just missed on the June MRI. As he stated in June, he does not feel the seizures are a result of the tumors. The neurologist disagreed initially, and I haven’t spoken with him since the latest MRI.

So, based on the information from the latest MRI, the neurosurgeon does not want to do surgery right now. He would like to wait six months and then do another MRI. He did say, of course, that if we had any concerns in the meantime, to call him. I really like this doctor, and I trust him with my child’s life. So, if he thinks it is safe to wait, we will wait. But still we are left with few answers.

Ashley is on three seizure medications now, and yet she still has 3-5 seizures a week. That is, of course, better than the 5-7 she was having each day. The neurosurgeon has suggested to the neurologist that an EEG be done. I haven’t heard if we will do that or not, but if it will help, I’m all for it. And still, even though none of the doctors agree with me, I think hormones may be playing a role in the seizure increase also.

So, while we still have some answers to find, I can finally breathe normally again knowing that brain surgery is not imminent. Heck, I might even be able to sleep tonight!

Monday, September 24, 2007

Hug or Takedown?

Recently, I’ve witnessed children being put into restraint holds by the adults whose task it is to teach/assist/supervise them. The first time I saw any child in a restraint, I found it incredibly disturbing. The principal of my daughter’s elementary school was lying on his back on the floor in the school’s common area. On top of the principal, also on his back, was a child who appeared to be maybe 7 or 8 years old. The principal had his legs wrapped around the child’s legs in such a fashion that the child could not move his legs at all. The principal also had his arms pulling the child’s arms back and held them immobile just as he did the child’s legs. I don’t know what precipitated the principal feeling he needed to restrain the child in such a way, and I don’t know why they were in the school’s common area. But, just as I walked upon the scene, the school’s bell rang, and students poured out of their classrooms.

The majority of the students moving through the hallway and common area were exhibiting one of two behaviors. One set of the children released by the bell just stopped and stared. Not a one of them said anything, but I do believe their eyes held worry, apprehension, and even fear. The second set of children moved around the principal and child in the restraint almost as if they weren’t there. This second set didn’t act surprised and didn’t seem bothered at all. The reactions of the second set of children were the ones that upset me the most.

Joel at NTs are Weird wrote a blog the other day about restraints, and I really liked his explanations. The comments that folks left for that blog entry are also very good. As I read what he wrote, I thought about my youngest daughter’s classroom. I know that restraints have been used, but I know also that they are very infrequently used. I attribute that to my daughter’s instructional assistant.

Besides providing superior support to my daughter, this aide has come to know each child in the classroom better than any other adult. She can spot when one child is heading for a meltdown. She understands the environmental triggers for each child, and she moves to make changes before things get out of control. And, as a result of that forward thinking approach, the children who previously would be put into a restraint hold, almost never go there now. Like one of the commentor’s on Joel’s blog, this aide knows when a child needs deep pressure for calming versus a restraint which could actually make the situation worse. She has even gotten one of the children to ask for a ‘squeeeeeze’ when she feels the need for one.

And because of the wonderful work this particular aide does, the other children in the school don’t have to witness things similar to what the elementary school children I wrote about above witnessed. The children in this school witness respect, dignity, and support not unnecessary restraints.

Sunday, September 23, 2007

Don't Fence Me In

Three times in the past week three different people have asked me if Ashley goes to school. I’ve heard that same question in the past also – a lot. And always I am dumbfounded for a moment, not knowing exactly how to reply.

Of course Ashley goes to school. Why wouldn’t she? I don’t understand what those people who ask that question are thinking? Do they think that because she has medical issues she must stay home from school every day? Do they think that her disabilities mean she shouldn’t be welcomed at school or that she is incapable of learning?

The question especially surprises me because every time I have been asked, Ashley is just being a kid. People see her walking and communicating. They see her eating and watching television. They see her move around our house and community with relative ease. Yes, she needs a sighted guide and often carries a white cane. Yes, she communicates with sign language instead of using her voice. Yes, she takes a lot of medicine. But other than that, she is pretty much a normal kid.

Once I answer the question with a “Yes”, the next question is usually, “Oh, a regular school?” And again, I try not to appear rude and show how I feel about that question, and I answer “Yes, our neighborhood school.” And, the people who ask both questions are usually professionals – seemingly intelligent, caring people.

I really believed that as a society we had moved past (for the most part) the idea of locking away people who are different and people who have disabilities. Have I been naïve?

Friday, September 21, 2007

Go Figure

A new study suggests that studying can actually help raise grades. Go figure.

This study is being published by the National Bureau of Economic Research. Do any of our tax dollars fund this agency (directly or indirectly)? If so, I and probably every other parent in the world, could have saved them a whole lot of money.

What's The Point?

Ashley is attending school today without a qualified one-to-one aide by her side. Although her IEP calls for the services of an aide who is “sufficiently proficient in sign and speech so as to provide a language role model”, today she is doing without that person. As my school district tells me, there are three other adults in the classroom – the teacher, who has no formal training in sign language, the classroom assistant, who has attended a two hour sign language training, and the instructional assistant assigned to another child in the room. That other instructional assistant does know some sign language, and might be able to meet the standard set forth in Ashley’s IEP. But how can she provide services to the child to whom she is assigned as well as to Ashley? Both Ashley and the other child have IEPs which call for a full school day of instructional assistant services.

When I asked this morning if a substitute was coming in to provide sign language services for Ashley today, I was told no. Ashley’s aide normally works with her from the start of the school day until 1.5 hours until school ends. Already that 1.5 hours concerned me. But today, Ashley will go the entire school day – 6.75 hours – without the support she needs and which is required by her IEP.

Ummm, so Ashley will be in the classroom, will not be able to hear anything that is being said, will not have anyone who can sign to her the lessons that are being taught, and will not have anyone who can understand what she is trying to say. I wonder what will happen if Ashley signs that she is sick or hurt? Who will understand that and offer assistance? How will Ashley benefit educationally from the day when no one is helping teach her? Will Ashley understand the point of even being in the classroom today? I’m not sure I do.

You can bet these issues will be discussed next week in the meeting which has finally been scheduled, the meeting I started asking for last August.

Thursday, September 20, 2007

Thankful Thursday

Today's Thankful Thursday entry is all about Ashley's trip to the hospital for an MRI under anesthesia. The MRI is a prelude to her appointment next week with the neurosurgeon who will decide the course of treatment for the two brain tumors he found this past summer. Today I am thankful...

  • that Ashley slept late this morning. Her MRI wasn't scheduled until 10am and I really worried how I was going to keep her from wanting breakfast. But amazingly, she stayed in bed and/or slept until time to get dressed to go to the hospital.

  • for the MRI staff who once again were very understanding of Ashley's anxiety and stress relating to being in the hospital, and therefore, moved through their paperwork as quickly as possible.

  • that the anesthesia doctor believed me when I said that Ashley would do much better if she were given some medicine to relax her before going back for the 'mask' anesthesia.

  • for Amy and her willingness to go back to the MRI room with Ashley. I am unable to go back because I have metal in one of my ears. It was very traumatic for Amy to go with Ashley for the June MRI and watch her eyes roll back as she fell asleep. Still, though, she was willing to go again today.

  • that the MRI staff let Amy 'run the show' until Ashley went to sleep. Amy signed everything that was happening and let Ashley hold the mask before it was actually hooked up to the medicine.

  • for 'people watching' while we waited for Ashley to be moved to the recovery room. It's funny, but I never go to this particular hospital without running into someone, and sometimes more than one person, that I know. That seems strange to me since Richmond is not a small town.

  • for the really, really good turkey burger I got in the hospital cafe. And it was cheap too!

  • for the recovery room nurse assigned to Ashley. She was wonderful - very caring, very skilled, and extremely helpful

  • that Ashley came out of her anesthesia much better this time than times in the past. She awoke easily and was even able to get herself into the car to go home.

  • that Ashley was able to walk (with assistance) into the house when we got home. After the last MRI, she was still so groggy that Amy and I had a really difficult time getting her into the house. We came very close to calling 911 to ask for assistance. Although Ashley has a wheelchair for times such as this, we do not have a ramp into our home.

All in all, a good day and the start of our journey to treatment for Ashley's two tumors.

Wednesday, September 19, 2007

Happy Dancing

Ballastexistenz has a great post today about "happy dances". Many of us have children who dance happily, each in their own unique way. Like Ballast, I have had doctors and school folks tell me that this behavior is something that needs to be extinquished or at least controlled. I disagree, and choose to celebrate the times when Ashley is happy and expressing herself, regardless of the form it may take.

Please take a moment to read the post on Ballastexistenz as well as the comments that her readers have left. Both things are celebrations of unique spirits, spirits I am grateful to know.

Tuesday, September 18, 2007

Speaking in Tongues

A 10-year-old boy has woken up with a posh English accent after undergoing life-saving brain surgery. Check it out!

Maybe Ashley will wake up after her upcoming brain surgery signing in Spanish!

Needing Answers - Sooner Rather Than Later

Ashley’s seizures are becoming more frequent and more severe. She is also experiencing some weakness in her right arm and hand. I’m thinking that since her two brain tumors are on the left side of her brain, they may be the cause of that right side weakness.

Her next MRI is scheduled for Thursday of this week, just two days from now. Then we follow-up with the neurosurgeon the next Tuesday. I really hope and pray that he has some answers for us because the three seizures medicines that Ashley is taking are not controlling the seizures and their side effects are not pleasant.

Ashley has been through so much in her 12 years of life, and I wish I could take her current health issues from her body and put them into mine. She really deserves to just be a kid for a while. Please keep her in your thoughts and prayers…

Monday, September 17, 2007

Bad Ballerina

Even though this mouse had on a pink tutu, this story definitely was NOT about Princess Pink and Glam Girl. We would never scare children like this:

The ballet that left children cowering in terror

Oh No, Here She Comes Again

I read a post yesterday about labels on a blog titled Mother of Shrek. As the author pointed out, our children have lots and lots of labels. But, as a parent of children with disabilities, I know I have lots and lots of labels also.

There are the ones we parents expect – Mom, Mommy, Momma – as well as other family-related labels – Sister, Aunt, Single Parent and Ex-Wife.

Then there are my work-related labels – State Employee, Computer Engineer, and Information Security Officer.

And ones relating to other people in our world – Friend, Mentor, Advocate, Ally, and Colleague.

And the ones relating to my many jobs around my home – Chef, Maid, Laundress, Gardener, Chauffer, Tutor, Nurse, and Teacher.

But perhaps my most special labels are the ones given me by my school district – Difficult Parent, Parent Who Thinks She Knows How Her Child Should Be Educated, Pain in the A**, B*tch, and my all time favorite – “Oh No Here She Comes Again”!

What labels do you have?

Friday, September 14, 2007

Space Bugs From Hell

I am usually a very strong person. I was going to write fearless, but that’s not exactly accurate. I may appear fearless, but really I am just good at appearing. But, there is one thing about which I cannot hide my fear – camel crickets. They are the Devil’s spawn, and I wish they all would die a hideous death equal to the terror I experience when I spot one.

I have a friend who is a ‘bug man’. I believe he would prefer to be called an entomologist, but nonetheless, he likes all those creatures I hate. He tells me every insect plays a role in nature, but all I could find on the Internet about camel crickets is that they can’t sing and they like to eat fine fabrics. Based on that information, I think we could do without them.

This is the time of year the nasty little arthropods start to invade my home. They are looking for warmth and moisture. I’ll give them warmth and moisture – hot insecticide! My cats view them as toys, loving the way they jump helter skelter in any direction imaginable. That jumping is what frightens me the most, and it seems they always decide to jump right into me to elicit the loudest squeal possible.

And take a look at them. They look prehistoric. One of the reasons I had to keep closing my eyes during the Men In Black movies is that several of the aliens looked very much like camel crickets. I’m still not convinced that the crickets are merely insects and not aliens come to invade my home.

Devil’s spawn, I tell you…..

Thursday, September 13, 2007

Thankful Thursday

Today, I am thankful for...

  • Having a day off yesterday from work. Yes, I was sick, but it was still wonderful to just lie in bed and do nothing all day. I needed it desperately.

  • Cooler evenings and early mornings

  • My down comforter that my brother gave me for Christmas a couple of years ago

  • Online shopping

  • Lasagna, salad and garlic bread

  • That I am having lunch tomorrow with Jane and Debbie - always a fun time!

  • Ashley's sweet kiss when she first wakes up in the morning

  • Japanese Cherry Blossom body lotion from Bath and Body Works

  • That there is nothing on CNN.COM today about Britney Spears

  • That I get to meet my new VaLend trainee this weekend

And On It Goes...

August 14, 2007:

Me: I would like to schedule a meeting during the first two weeks of school to discuss instructional assistant support by a qualified signer for my daughter. Here are the dates and times I am available.
Them: That’s a great idea.

September 4, 2007:

Me: As I mentioned in August, I would like to schedule a meeting to discuss instructional assistant support by a qualified signer for my daughter. Here are the dates and times I am available.
Them: We will ask your daughter’s new teacher to schedule this.

September 13, 2007

Me: As I mentioned in August and again on September 4th, , I would like to schedule a meeting to discuss instructional assistant support by a qualified signer for my daughter. Please consider this my formal request for an IEP meeting, and here are the dates and times I am available.
Them: I’ve asked the teacher to schedule this. I apologize for the delay, we’ve been trying to coordinate schedules.

To be continued…..

Wednesday, September 12, 2007


Every man had his own quirks and twists" (Harriet Beecher Stowe).

When Corey, my soon-to-be 15 year old, moved in with my family almost two years ago, he brought his clothes, a few books and movies, a zillion little ‘toys’, a list of different diagnoses, and a bag full of medicine to help with those diagnoses. To me, Corey seemed a little quirky indeed, but I struggled to come to terms with the fact that he needed 5 different medicines to address that quirkiness. Because I also have two daughters – Ashley and Jessica – who have significant medical issues and who do require a lot of different medicines to help maintain their healthiness, I had a difficult time seeing a relatively ‘normal’ child who almost never got sick needing so much medicine. So, I made appointments with the types of doctors he had been seeing before joining our family - a neurologist, a psychiatrist, and a pediatrician - to have him evaluated.

The results of the visits, the testing and the evaluations revealed that Corey was quirky and perhaps a little ADHD. So, the meds were dumped and Corey began his life with a lot less fogginess and fewer labels. As with my other children and myself (I’d hate to see what meds I would be prescribed if I were to visit the doctors that Corey saw before joining my family), we accept and even celebrate our quirks, and that makes all our lives much less stressful and a lot more interesting.

Loraine Ali, a mom who also celebrates her child’s quirkiness has written an article which appears on It’s a great read and I suggest all parents of quirky kids take a look…

Tuesday, September 11, 2007

Ready or Not?

On this sixth anniversary of the World Trade Center attacks, I started thinking yet again about disaster planning. I know that the Office of Homeland Security, most businesses, and other government organizations have said that security and disaster planning is a priority, but I wonder if anything really has changed since September 11, 2001. We (the U.S.) even had another event to put into practice all that had supposedly been learned and developed – the hurricane Katrina disaster. Obviously that event was also a failure from the viewpoint of preparedness and disaster recovery. But the thing that occupies my mind most today is more personal – what would the impact be on my family should a disaster (natural or man-made) occur right now, right where we live?

I examined this question from several angles. First, if the disastrous event occurred while my children were in school, how would the schools handle things, and how would I get reunited with my children? I remember on September 11th, six years ago, that I felt compelled to leave work, and rush to the sides of my children. I knew I would just feel better if they were all with me, not spread around three different school buildings. That condition still exists today – my four children are in three different schools. How, and in what order would I go to get them, if I even could get to them? How would they all handle the waiting for me, or worse, how would the handle being injured? Could I depend on the school staff to comfort my children and make sure they were as safe as possible? Unfortunately, I think the answer to that question, at least for my three children with disabilities, is NO. In two of the three schools attended by my children, the teachers of children labeled with severe disabilities are advised not to take their kids outside for fire drills. So, how will the teachers and the students know when the loud buzzer is signaling a drill or an actual event? The cynical me thinks the disaster plan for children with disabilities is to sacrifice them in favor of getting the non-disabled to a safe place.

The second scenario I envisioned was being at home with my children when a disaster struck. I asked myself do I have a disaster plan in place, and especially one that addresses the significant needs of my children with disabilities? The answer is no, unless you count the jumbled list of thoughts in my head a disaster plan. So, while I am questioning and suggesting and demanding that my school system develop a comprehensive disaster plan, I need to do the same thing myself at home. After googling a bit, I found some good resources to help me down that path. They are listed below and I suggest everyone, especially families who have family members with special needs, take the time to review them.

Monday, September 10, 2007

Eugenics Lives

I can't even come up with any words to describe the atrocity discussed in the article below.

Italy Investigates Botched Abortion of Healthy Twin, Disabled Brother Lives
by Steven Ertelt Editor

August 27, 2007

Rome, Italy -- Officials in Italy are investigating a botched abortion done on twin brothers where the healthy brother became the victim of the abortion and the twin, who has Down syndrome, lived. The disabled brother was the target of the abortion procedure and the case is raising the ugly specter of abortions done to kill disabled people.

The abortion was done on a 38-year-old woman in June at a hospital in Milan, but news of the mistake only recently came to the public's attention.

Doctors at the San Paolo hospital told Italian media that the babies moved during the abortion procedure and changed position compared to their locations during a pre-abortion examination.

According to the London Guardian, hospital officials have given the proper paperwork and information to authorities.

After doctors realized their mistake, they notified the woman in question. She returned to the hospital to have the disabled baby aborted as well and then reported the doctors to the police. The case has caused some in the political scene to call for a review of the nation's abortion laws.

Leftist Senator Paola Binetti wrote in the Corriere della Sera newspaper that, "The time has come to re-examine the abortion law’ that dates back to 1978."
"What happened in this hospital was not a medical abortion but an abortion done for the purposes of eugenics," she said. "They wanted to kill the sick fetus and save the healthy one and what didn't work properly in this business was the selection."

Christian Democrat politician Luca Volonte also denounced the failed abortion as "infanticide arising from a contempt for human life." But pro-abortion Health Minister Livia Turco defended the pro-abortion laws as "very wise" and said they should not be changed.

This is the second time that an abortion planned for a disabled baby has gone wrong. In March, a baby boy died who became the victim of an abortion after doctors failed a disability test on him. Physicians advised his mother to have an abortion after they had misdiagnosed a physical deformity but the boy survived the procedure. Doctors at the teaching hospital Careggi performed two ultrasounds on the boy and his mother and they said he had a defective esophagus. That's a disorder that surgery could have corrected after birth in some cases.

However, when they went to abort the baby boy, they discovered he was healthy and desperately tried to resuscitate him. The boy was born healthy and lived for six days following the failed abortion, which was done at 22 weeks into the pregnancy. Italy's abortion law allows abortions up to 24 weeks of pregnancy in certain cases but it also requires doctors to do all they can to save the life of a baby who survives a botched abortion attempt.

There are about 138,000 abortions that take place annually in the European nation.

Saturday, September 8, 2007

No Sense

Brooke is ready to leave the hospital – but she can’t. Brooke had a tracheotomy approximately six weeks ago, and her recovery has progressed very well. She’s now back to her happy, smiling self and is very anxious to get back to school and home. But, because of an insurance requirement, she is unable to do that.

Brooke, because she is adopted, has Medicaid insurance. Medicaid is usually a very good insurance, covering almost everything children like Ashley and Brooke (children with special needs) require. But sometimes the rules surrounding Medicaid insurance seem to get in the way – seem to do the opposite of what most insurance companies want to do – save money.

Brooke cannot leave the hospital until a nurse is found to stay with her during the school day and for a few hours after school. Even though the hospital would prefer that Brooke’s mom have 24 hour nursing care, Lynnette, like me, finds such a service intrusive and knows that she is more than capable of caring for Brooke for most of the time. Medicaid will only deal with three nursing agencies to find a nurse for Brooke, and those agencies have nursing shortages (more than likely because the Medicaid reimbursement rate is lower than the average nursing pay). So, Brooke, like many other children in hospitals who could go home if they found nursing care, stay in the hospital.

Even if a nurse could be found outside those three agencies, Medicaid will not cover the costs. Rather, by insisting on dealing with only the three agencies, Medicaid continues to pay high hospital costs – very high daily costs which could stretch into weeks and months because of the shortage of nurses at the three agencies. And families, like Lynnette and Brooke, end up suffering.

Lynnette’s job is secure for 12 weeks because of the Family Medical Leave Act. She does not get paid during those 12 weeks, but she is assured of keeping her job. After 12 weeks, all bets are off. So, Medicaid, in addition to incurring high daily hospital costs will very likely contribute to a parent losing his/her job and increasing the public assistance rolls.

Can someone tell me how any of this makes sense?

Friday, September 7, 2007

Apple Season

The start of school reminds me that Fall is just around the corner. Even though the temperatures here in Virginia are still sitting around 90 degrees, school busses, new lunchboxes, cool weather clothes in the stores, and the first falling leaves get me in the mood for sweaters and crock pot cooking. One of my favorite things about Fall is that with it comes apple picking time.

Just 70 miles from us is a wonderful apple orchard named Carter Mountain Orchard. After a steep, winding ride up a mountain, we are greeted with acres and acres of apple trees, a barn store, and many activities for children. Everything other than the actual apple orchards is handicapped accessible, which garners them many kudos from me. When we drive into the parking area, the aroma of baking apples and spices fills the air. And, they have absolutely the most wonderful apple donuts in the world!

The kids and I take a picnic lunch, spread a blanket on the hillside, and enjoy the country atmosphere. We don’t actually pick apples (that accessibility thing), but we do buy some that have already been picked, along with apple cider and extras of the apple donuts. Since pumpkins are also available at the same time, we pick out our Halloween pumpkins along with the apples, and have the same discussion we do every Fall about whether the pumpkins will have scary faces or happy faces. After a few hours, we pack everything into the van and head back down the mountain – tired, more than a little dirty, but happy and looking forward to more apple dishes.

Many years ago, my apple pie recipe won a blue ribbon at the state fair. I can’t share that recipe with you because it has a secret ingredient, and if I shared it, well, then it wouldn’t be secret anymore, now would it? But, here is another of my family’s favorites:

Apple Cobbler


1/2 c. sugar
1 teaspoon baking powder
1/2 tsp. cinnamon
1/4 tsp. salt
4 c. thinly-sliced pared apples
1 well beaten egg
1/2 c. evaporated milk
1 c. sifted all-purpose flour
1/3 c. melted butter


Place apples in bottom of a greased 8 1/4" x 1 3/4" inch round baking dish. Sprinkle with a mixture of the sugar and cinnamon. Mix dry ingredients together. Combine egg, milk and butter. Add dry ingredients all at once, and mix until smooth. Pour over apples. Bake at 325 degrees for about 1 hour, or until a toothpick inserted in the middle comes out clean. Serve warm. Makes 8 servings. The addition of a handful of black walnuts to the apples makes for mighty good eating!

Thursday, September 6, 2007

Thankful Thursday

Instead of doing a list of 10 things for which I am thankful, today I am going to focus on only one thing. I’m doing that because that one thing was so positive and so unexpected that I think it deserves single billing.

Today I am thankful for…

Carilion Labs and the wonderful folks who did blood work for Ashley yesterday afternoon. Until recently, there was only one lab in town for blood work. Even our local hospitals would use that one lab for most of their hospital lab tests. The problem with having only one company was that if that one company wasn’t exactly what a patient wanted, it was just too bad.

Ashley is a very tough kid for a blood draw. Because of all the medical procedures she has endured in the past, a great many of her veins are scarred or ‘blown’. Even the best of the lab techs would have a tough time finding a vein and then keeping it open long enough to get the amount of blood needed. When Ashley was in intensive care a few years ago, the doctors finally had to open a “direct line” in her groin area just to be assured of always having access to blood. The worst for me was when they also had to go into a “direct line’ in her neck.

So, when Ashley’s neurologist suggested we might want to try a new lab company that had recently opened in our area, I was all for it. The lab hours were convenient, and the location was even more convenient. When we arrived yesterday afternoon, we were greeted warmly, and all our paperwork was handled very quickly. Then the moment arrived to put them to the test – to see how they would handle getting blood out of Ashley.

They called us back into a small cubicle and suggested Ashley just stay in her wheelchair. That was the first good thing they did. Trying to get Ashley to move to the blood stick station would have not gone over well at all, and probably would have required physical force from multiple people.

As they prepared the syringes and other supplies, the two techs in the room with us were talking very loudly – good thing #2, understanding Ashley’s significant hearing impairment.

They talked to Ashley, not through me – good thing #3, recognizing Ashley as her own person.

As they prepared Ashley for the procedure (alcohol wipe, tourniquet, etc.) they were also talking in a soothing tone and stroking her arm at the same time – good thing #4 to realize that touch is very important to someone who is blind and scared.

They continued to talk to her, telling her how beautiful she was and how brave she was – good thing #5, continuing to calm her when she was in a strange place with strange people.

The tech that had planned to do the needle stick asked me where the best place would be – good thing #6, listening to Mom.

Because in Ashley the best place right now happens to be the top of her wrist, the first tech said she was not the best at sticks there and suggested the other tech might want to take a look. That second tech was comfortable with wrist sticks and said she would be glad to do it – good thing #7, understanding one’s weakness and calling for reinforcements.

They were quick with the blood tube switches, and gently pulled the needle out of Ashley’s wrist. Still keeping their hands on her to calm her, they held pressure on Ashley’s wrist until she stopped bleeding. I had told them that Ashley hates bandaids and would not leave one on. They listened and opted for direct pressure instead – good thing #8, admitting they don’t always know best.

In less than 15 minutes, we were in, registered, had blood drawn, and were heading home. We have had so many blood draw nightmares in the past, that this one was almost a dream come true. I am so thankful that this new company has moved to Richmond, and so glad that we have found them.

Thank you, Carilion Labs!!

Wednesday, September 5, 2007

One of THOSE and Proud of It!

I get so angry when people assume that because someone looks differently, acts differently, communicates differently, walks differently, etc. etc. that they are inferior in every way. As expected, the start of this new school year brings this very issue to light once again.

The teacher in Ashley’s classroom is new. Two of the three instructional assistants are new. These people are told how the classroom of children is labeled – children with severe and profound disabilities – and immediately assume the children have significant limitations. Rather than embrace each child as a unique human being with individual gifts, the label sets a standard on how the children will be taught, how they will be treated, and how they will compare to other less or non-disabled peers.

I must begin the same battles I fight each year to convince the school staff that my daughter is capable of learning, is a unique and special person, and is worthy of being treated just like any other human being. Her abilities must be defended over and over again. She must prove herself over and over again. The assumption is made that she cannot and will not act or be treated like the general education students, and further, that it would do a disservice to those general education students to even interact with Ashley.

Reactions to Ashley run the gamut from pity to unrealistic compliance and behavior expectations to almost no academic expectations. Why can’t people see her the way I saw her this summer – a fun-loving child who plays jokes on her brothers, delights in riding on a jet boat, has to be dragged out of the swimming pool each day, and laughs at my goofy attempts at humor? Why don’t they see her outgoing, strong-willed personality and her willingness to try anything once? If she only spoke Spanish, would they refuse to speak in any language but English? They are doing the same thing when they refuse to communicate with her in Sign Language. Why do they get angry or frustrated with her when she gets angry or frustrated when she is treated as a sub-human? Would these people treat any of their own family members the way they treat Ashley? I really understand now those parents who celebrated when their children with disabilities exited the school system.

I must admit that with each new school year my patience wears thinner and thinner. Collaboration was always my mantra when trying to work through issues relating to Ashley’s educational program, but I am growing weary of that approach also. I may have been one of those parents before, but starting this year, I am one of THOSE parents. Everyone has been warned...

Tuesday, September 4, 2007

In Hiding?

Of all the essays I read on yesterday's blogswarm against telethons, one stood out. I suggest everyone take a few moments and read what Ballastexistenz had to say. She talks not only about the effects of pity, but how people with disabilities avoid others and situations in which pity might occur. Is this what parents of children with disabilities also do at times? Have I done this? I hope the answer is NO, but I would bet it is YES.

Monday, September 3, 2007

Please, Not Another Pity Party

I hate pity telethons and I hate Jerry Lewis. Seems I'm not alone in this. Check out this website, and read the wisdom of many others. I'm not feeling very wise myself today, only angry, especially knowing the Jerry Lewis Telethon is once again pandering pity.

Sunday, September 2, 2007

Another year - more battles?

School will be back in session in just a day and a half, and for three of my four children, the new year will start off on a positive note. However, for Ashley, I’m not sure that will be the case.

Even though Ashley’s IEP (individualized education program) calls for a one-on-one instructional assistant for the entire school day, an instructional assistant who is “sufficiently proficient in sign and speech so as to provide a language role model” for Ashley, last year was the first time that service was provided, and it was only for a portion of the school day. By mid-year last year, I had battled hard enough with the school team to have the IEP reflect that such a service would be provided for the entire school day. But having it written in the IEP and actually having the service provided are two different things.

Ashley had a wonderful instructional assistant, one who was fluent in sign language, for six hours of each school day. Because the school district did not provide the service for the remaining 45 minutes of each school day, they did agree to compensatory services over the summer to make up for the missed time. Such an arrangement is not, however, acceptable to me this school year.

Ashley MUST have someone who speaks her language – sign language – for the entire school day. If she does not, she becomes quite frustrated, can begin to exhibit self-injurious behaviors, and gets no educational benefit from the school lessons. The wonderful assistant from last year has agreed to work with Ashley but only part time. She will be with Ashley from the start of the school day and will stay until 2pm. School does not dismiss until 3:15pm. So, who will provide the services Ashley requires for the last hour and 15 minutes each day? That is the question that worries me about the start of school.

I understand that the first week of school is hectic for teachers and students. But it is unacceptable to me that even during that first week that Ashley will not have the language support she needs to be successful. So, my attorney and I are closely monitoring the situation, and will not hesitate to take action.

I really wish the start of each school year could be a positive experience for Ashley – a time to look forward to making new friends, seeing old friends again, learning exciting new things, and anticipating happy times – times like my other three children will have the opportunity to experience.

People who have not experienced the battles I have faced over the last 10 years of Ashley's education would probably tell me to just wait and see, assume the school district will do what it is supposed to do. Parents like me, those who have endured the battles over and over again, just can't wait and see. The history of inadequate education for our children, especially those with severe disabilities, has been written and rewritten many, many times. We are way past the wait and see stage. It just might be time for my mad face..