The Cost of Education

Okay, I can’t put it off any longer. I’ve got to buy Ashley some new socks, get the boys those super giant notebooks to give the illusion of organization to their school work, and pull out the IEPs so I can gently(?) remind teachers what they are supposed to be doing this school year.

I’m really not ready. Although I long for the routine and predictability that the school year brings to our daily schedules, I’m not ready to put on my smiling, cooperative face and pretend that my school district is trying its best to educate my children.

While there are individual teachers and aides who sincerely care about my children, my school district as a whole could care less if we stay or go. My four children will again don their student numbers and become part of the mass called ‘student body’. They will have lunch line numbers, schedules with their class room numbers, and grades reflecting their performance numbers. But will they have names?

How many battles will I have to fight this year? Will Jessica get her laptop computer that the school district promises every student? Will Corey be challenged in his classes or just written off as a not-too-bright kid, a kid who is easier to ignore than to put forth effort to figure out? Will Ashley receive the communication support she needs or will the same struggles I have faced since she started school at age three continue to surface?

I think this year I will keep a running list of all the battles – those that are small and those that aren’t. I’ll record how much time I spend fighting for an appropriate education for my children with disabilities. Then maybe at the end of the school year, I will present my school district with a bill for my services as their ‘watchdog’. Surely they would want to pay it, don’t you think?

My Mind Wanders

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

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

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

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

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

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

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

Heating Up Autism

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

Elevated Temperature Can Restore Cell Communication in Brain

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

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

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

Getting The Truth Out

Dear School District,

You’ve been in the news a lot this past week, and for once the spin is not too bad. Seems there is a little girl in one of your elementary schools, an elementary school in perhaps the most affluent part of the county, who has a rare muscular disorder. Exposure to UV rays of the sun can make her disease worse. According to this little girl’s mother who asked for your help, you decided to build a canopy over the school’s playground so the little girl could join her classmates outside. In the mother’s words, you, school district, said “We would do this for any child. Our public school systems are here to accommodate the needs of all children.” Really? Did you say that?

I’ll come back to your purported statement in a minute, but right now, let’s talk about this playground canopy a little more. Seems it cost $24,000. Sounds like a lot of money for just a canopy, but considering where the school is located and the cost of housing in that area ($500K and up), $24,000 doesn’t sound so bad. Of course, some of the families living in that area would disagree with me, but so far I haven’t seen anything reported about other ways those families feel the $24,000 should have been spent. Some of those dissenting families have expressed concern over the looks of the canopy. Seems they don’t think it fits in well with their expensive bricks and brass. But I’m sure as the trees grow around the playground, the canopy will seem less an eyesore to them. And, according to on poll taken on a local radio station today, over 80% of listeners supported the building of the canopy. It's been quite a while since you've seen spin as good as that, I imagine.

Now, back to your statement about accommodating the needs of all children. I am very happy to hear that, and truly hope it will extend to all areas of your educational mission. In fact, your mission statement, published on your website, does indeed support your accommodation philosophy:

Mission Statement
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

Our mission 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.

So, just for the record, can I now expect you to accommodate my daughter’s needs? You know, the one who’s educational plan calls for a sign language assistant for the ENTIRE SCHOOL DAY and for whom you are only providing such support for part of the school day, and the one who was left ALONE in the classroom yesterday while everyone else went to the pep rally – ALONE as in no one, not staff, teacher, or even another student was with her – you know, my daughter who is deafblind and epileptic. Should I expect this new accommodating philosophy for ALL CHILDREN to begin today? Just wondering…..

What's Your Definition?

Deb*or*ah [deb-er-uh, deb-ruh]
-noun
1. mother of four children, three of whom have disabilities
2. tireless advocate for her children and others with disabilities
3. advisory board member
4. trainer
5. blogger
6. ex-police officer, current computer engineer, avid reader, gardener, hiker, beach lover, and basically normal person with typical dreams and desires

---

In the dictionary entry for my life, I wonder if I am defined totally by my children. For the past 17 years my name has changed from “Deborah” to “Chip’s Mom”, “Ashley’s Mom”, “Jessica’s Mom”, or “Corey’s Mom”. When people describe me to others, phrases such as “single mom”, “that mom with disabled kids”, “disability advocate”, “disability organization board member”, “trainer in disability issues”, and “disability blogger” are almost always used. Articles have appeared in many publications about me, but they are always written in the context of my family. My immediate circle of friends are people like me – people with a commitment to the rights of the disabled and those who have children with disabilities themselves, and most of the publications I receive in the mail have something to do with disability issues. For the majority of my life, excluding the past 17 years, was I just a work in progress, an incomplete dictionary entry?

I certainly don’t mean to imply by the statements and questions above that I am unhappy with my life as it now exists. Although the battles have been many and still continue each and every day, I am happier and more at peace with myself than at any past moment. I do feel overwhelmed at times with the insurance fights, the school battles, the medical visits and hospital stays, all of which accompany a significant lack of sleep. I wonder what it would be like to be *just* a parent of four teenagers and facing the traditional issues that come with parenting emotionally immature, know-it-all, hormone-ravaged children. I imagine a life without concerns surrounding IEP meetings – a life without extreme debt due to fighting for the legal rights of my children – a life where physical accessibility wasn’t foremost in my mind whenever I planned an outing or a vacation. I imagine a life where I might occasionally date, might meet a man that didn’t run as fast and as far as he could after meeting my children. And I imagine a life where I didn’t fear my own death – not because I am afraid of dying, but because I am afraid of dying and not being able to care for my children with disabilities. I am afraid what will become of them at that point.

But even with all those worries and battles, I see the difference I am making for both my children and for others with disabilities. All I have ever really wanted from my life was to make a difference – to repay the debt of being allowed to exist and flourish in this crazy wonderful world in which I live. I truly believe I am making a difference, and that is why I am happier than I have ever been – no matter how I am defined.

The Doctor Will See You Now

We live in a city that has many very good hospitals. One of those hospitals is a teaching hospital, and many of the doctors that my children visit were graduated from there. It’s an inner city hospital which means should you have to visit the emergency room, you may find yourself sitting next to someone who has been shot or stabbed, and you will most assuredly hear very colorful language floating through the waiting room. One statement I have heard many times is that if someone is hurt very badly or is really ill, this particular hospital is the place to go. I agree with that assessment. But being in this hospital does present at least one challenging decision making opportunity.

The very nature of a teaching hospital is that you have a lot of medical students that want to experience and learn from the patients. If you happen to be a patient that has an unusual or rare condition, one that doctors, let alone medical students, may have few chances to view, you will be swamped with visitors in white jackets during your hospital stay. Such has been my experience with Ashley’s visits.

Besides being deafblind, which in itself is a very low incidence disability, Ashley is diagnosed with juvenile xanthogranulomas. This condition presents with multiple tumors, and very, very few people in the world have been diagnosed with this. For Ashley, it meant she had tumors on her skin, under her skin, on her brain, ears, and eyes, and on other vital organs. She has had two brain tumors removed in the past, and currently has three more. She has also had her gallbladder removed due to tumors. The normal (seems an odd word to use) course of the condition is that tumors stop forming around age 3. Ashley, at age 12, still has tumors forming. She is the oldest documented person with this condition. You can imagine the number of visitors she gets when she goes to this particular hospital.

The challenge for me is weighing the value of the ‘teaching’ with the issue of privacy and Ashley’s need for recuperation. My experience has been that the doctors doing the teaching get a little miffed if I request visits be limited. During one particularly long stay at the hospital, I finally had to ask that the student visits be limited to once in the morning for 10 minutes and once in the afternoon for 10 minutes. The senior doctors did not appreciate that at all, and I think my actions ultimately had a slightly negative effect on the care that Ashley received during that hospital stay.

I wonder if there are any classes for the medical students on sensitivity training and respecting a patient’s right to privacy?

The Sounds of Silence

Ann Coulter, a right wing political commentator, has once again moved into the media spotlight. In her recent remarks on Donny Deutsch's "Big Idea" CNBC show, she said essentially Jews should become Christians so they can become "perfected." The outrage of many Americans is being voiced across news outlets even as I write. I have seen Ms. Coulter on TV several times in the past month, and each time she annoys me more. Her views are NEVER my views, and I often believe she is spouting off just for the sake of getting her face on TV. She seems to really enjoy the media spotlight, and it certainly gives her ample opportunity to show off her very short skirts and spiked heels. But today, I decided to do some searching and see if she had ever lambasted people with disabilities. I didn’t uncover much, and what I did uncover was very subtle. But, I think it gives a very clear window into her level of disability awareness.

As some of you may know, Ms. Coulter had a lot to say about the United States Supreme Court decision in the PGA Tour v. Casey Martin case involving Mr. Martin’s desire to use a riding cart during PGA events. Mr. Martin has a disability. The Supreme Court found that Mr. Martin was within his rights to use a riding cart. (A very good analysis of the case can be found here). Ms. Coulter, however, feels the Supreme Court’s “arrogance knows no bounds. The Supreme Court has now presumed to tell the PGA, Jack Nicklaus and Arnold Palmer what is "essential" to the game of golf.” But her most telling comment, at least to me, was what she said about the American’s With Disabilities Act – “Justice Anthony Kennedy has described the ADA as "a milestone on the path to a more decent, tolerant, progressive society" -- which tells you about all you need to know. Also a milestone on the path to a less free society.” It’s the last part of her statement that tells me all I need to know – she believes the ADA is a milestone on the path to a less free society.

If Ms. Coulter believes Jews need ‘perfecting’, one can only imagine what she thinks about people with disabilities. I think it is well past time for the news media to stop giving air time to her. As George Duncan commented on a Diversity.Inc blog, “You should understand that Ann Coulter is a professional performer ... one-trick pony who entertains at conservative events by making deliberately obnoxious statements. The more space you give her, the more you validate her act. The best response to her is silence.”

It’s time for silence.

Mother Gone Mad

I'm very disturbed by the number of stories like the one linked below that are popping up almost every day in the news. And what about the ones that don't make the news.

Mother Seeks Girl's Hysterectomy

Did this mother take her cue from the Ashley Treatment, or has she just gone mad? In the story, Katie's mother says "She's not going to get married and she's not going to have children...Katie is not going to become a normal adult."

Excuse me, I am not one to often use off-color language, but how the H*LL does this mother even begin to know what is normal?

Mrs Thorpe, the mother, also said her daughter would not be able to ask for help or even let people know what she was feeling. If that is true could it be because NO ONE HAS EVER ASSISTED HER IN DEVELOPING A COMMUNICATION SYSTEM!

This child has cerebral palsy and her mother wants to rip out her uterus! What if she had migraine headaches - would mumsy be wanting brain surgery?

I agree with Simone Aspis, of the UK's Disabled People's Council, "As far as we're concerned that is totally and utterly unacceptable."

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

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.)

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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”

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

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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”

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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.

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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.

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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

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Virginia Department of Education
MISSION:
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".)

VISION:
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!)

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?

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.

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?

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?

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..

School Supply List

I found the following post on a Special Ed Law blog and loved it! It is definitely worth reprinting. I just wonder if the things on the list would qualify for Virginia's tax-free school supply weekend?

School Supply Lists For Kids With Special Needs
by Lori Miller Fox

It’s that time of year again. Back to school. When parents all over the country, list in hand, ambush the stores in search of the perfect school supplies. Red, plastic, 8x12 pronged folder with pockets, green wide-ruled five-subject spiral notebook. Every subject has a specific pencil, every class a unique pen. But somehow those itemized lists never seem to apply to my son. Just seeing the word “Elmers” used to get me unglued, the word “ball point” would start me balling, and the word “scissors” would cut me to my very core. The only thing that seemed remotely useful was the mandatory box of Kleenex tissues to wipe away the tears, so I always bought an extra for my own supply closet.

After years of suffering in silence, I’ve put together my own, more functional list for kids with special needs, their families and the staff who “just don’t get them”.

• Downward spiral notebook - a handy place for teachers and therapists to record a student’s regression and lack of progress.


• Nap sack - a book bag which conveniently doubles as a cushion to be used by staff as a pillow when they’ve fallen asleep on the job.


• Miscalculator - a battery-operated problem-solving device for staff with very low expectations.


• Number twenty-two pencil - a writing tool used by special needs children who are not the school’s number one priority.


• Moral compass - an instrument that should be used by school staff to measure their degree of guilt and irresponsibility when they are not doing what’s best for their students with special needs.


• Organ-izer - a place to put a heart after the school system has ripped it out of a parent's chest.


• Three-ring circus notebook - a binder used to display a student’s laughable work product.


• Right-out - a bottle of liquid paper used to cover up a child’s legal rights.


• Bull point pen - a writing tool used by staff to keep parents apprised of how “well” their child is supposedly doing at school.


• Destruction paper - colorful paper used to pass off art projects made by an aid as a child’s own.


• Eleven-inch ruler - a straight-edged instrument used with students that staff think don’t measure up.


• Hanging files - a place where biased evaluations are kept until they can be compiled and used to hang a child out to dry.


• Mask-on tape - a roll of adhesive strips used to cover the smirks on school staff members’ faces when professing their committment to your child’s education.


• Pest-it notes - yellow sticky-back slips of paper that can be attached to notebooks and letters of detention on which can be written what a pest your child is at school.


• Subjective dividers - Deep-seated misconceptions and beliefs housed inside the minds of ignorant school staff and administrators that separate children with special needs from their neurotypical peers.


• Scruple remover - a device not needed by many school employees, as most of their scruples have already been removed.


• Make-up-their-own-ruled paper - sheets on which school staff explain why they can’t accomodate your child, usually starting with ”that’s the way we’ve always done it.”


• Lead balloon pencil - tool used to write things about a child that don’t go over real well with the parents.


• Low lighters - transparent markers used to emphasize the low points in your child’s academic career.


• Never let ‘em see you sweatshirt - Mandatory parent dress code at all IEP meetings !

Lost Opportunity

I attended a three day conference on deafblindness last week. Experts had been brought in from across the United States, and several sessions ran concurrently each day. The majority of the attendees were teachers, social workers, and case managers. A handful of parents also attended, and for those parents, childcare was provided during the day.

The person in charge of childcare for the conference was incredible. She had recruited a very experienced staff of workers, and she had set up the perfect room for children with dual sensory impairments. She covered every base, and although I have attended many conferences like this in the past where childcare was also provided, this year was the best ever.

Something surprised me though. Not one of the professionals ever stopped by our childcare room. Not one of them asked to meet or interact with the children. Not one of them even asked any of the childcare workers how things were going. The childcare room was not tucked away out of sight. It was in clear view of the attendees, and during lunch breaks, everyone ate together – parents, children, childcare workers, and professionals. But the parents, children, and childcare workers sat at separate tables. Even during this relaxed break time, no professional asked to meet or interact with the children.

Does that seem strange to anyone other than me? Here were professionals attending a conference on deafblindness. They were being trained in many issues relating to the education of children with deafblindness. There were learning about the value of communication and inclusion. Yet these professionals were neither communicating nor including. Here was the perfect opportunity to learn more from a parent’s perspective – to observe the children and ask questions about real life situations – to put into practice what had just been discussed in the conference sessions. Yet the opportunity was passed by.

I was very disappointed, very disappointed indeed.

Same Difference

The world of education is filled with labels. There’s gifted education, special education, and one of my all time favorites, exceptional education. Looking only at the words themselves, there would appear to be little difference among those three. In fact, I decided to look up those three words in the dictionary. Here’s what I found:

spe•cial–adjective

1. of a distinct or particular kind or character: a special kind of key.


2. being a particular one; particular, individual, or certain: You'd better call the special number.


3. pertaining or peculiar to a particular person, thing, instance, etc.; distinctive; unique: the special features of a plan.


4. having a specific or particular function, purpose, etc.: a special messenger.


5. distinguished or different from what is ordinary or usual: a special occasion; to fix something special.


6. extraordinary; exceptional, as in amount or degree; especial: special importance.


7. being such in an exceptional degree; particularly valued: a special friend.

ex•cep•tion•al–adjective

1. forming an exception or rare instance; unusual; extraordinary: The warm weather was exceptional for January.


2. unusually excellent; superior: an exceptional violinist.


3. Education. (of a child)
   a. being intellectually gifted.
   b. being physically or esp. mentally handicapped to an extent that special schooling is required.

gift•ed–adjective

1. having great special talent or ability: the debut of a gifted artist.


2. having exceptionally high intelligence: gifted children.

So, being special means being exceptional. And gifted means having a special talent. And exceptional means being gifted. Umm, if the terms are pretty much interchangeable, then why is there such a disparity in how the terms are used as labels in our school systems?

In my school system, having a gifted label means the student is extra smart. Those students are taught in challenging classrooms and exposed to many different teaching techniques. They go on different field trips – more intellectually stimulating ones. They are strongly encouraged to take part in intellectually-slanted extracurricular activities – things like the Chess Club, Destination Imagination, and Knowledge Master competitions. Having a label of special or exceptional, however, means the student is one of the lost.

Special education or exceptional education students often are not included in field trips. It is rare to see a student with one of those two labels even participate in extracurricular activities, much less have the opportunity to participate in intellectually stimulating after school activities. Often these students are further classified by such terms as learning disabled, educable mentally retarded, trainable mentally retarded, emotionally disturbed, and severely and profoundly retarded. The majority of students with any of these labels are often not taught with any approved curriculum, but rather spend their days working on functional skills such as toileting and handwashing or going on community based instruction trips to the mall or bowling.

Gifted education students are encouraged to explore and learn in many different ways. Exceptional education students, most often without encouragement, explore and learn in many different ways. Wait a minute, does that mean both these types of students might actually be learning the same way? Does it mean that the same supports and encouragements will make the learning experience successful for both these groups?

My goodness, I believe it does….

Take This Job and Shove It

Do you remember career days from elementary and middle school? I believe in high school similar events are called career fairs. People with all different types of jobs are brought in to share their experiences with the students with the hope of exposing those students to the many options for their employment futures. I think it is a great idea to encourage the students to explore career choices and hopefully find the one(s) that interest them the most. That’s what most adults want for children – happy, fulfilling careers. Unless the child has significant disabilities.

My children with significant disabilities are not included in career days or career fairs. Sure, they have “transition” meetings when they reach their late teens – meetings at which a group of adults discuss what the future holds for the child with disabilities. But even at those meetings, the children are not asked what they would like to do as adults. (Yes, yes, I know IDEA 2004 requires that children participate in their transition meetings and that they be asked what their interests are – but let’s get real. How often does that really happen?).

During the elementary school years, children with significant disabilities begin learning functional skills – that translates into hand washing, toileting, and eating. Along comes middle and high school, and those functional skills begin to include things designed to prepare the child for employment. The problem is the children are not asked along the way what type of employment interests them. They are not exposed to options as are children without disabilities. They are merely taught to sort, collate and assemble things like toothbrush holders. I don’t know about you, but if I had had to spend my entire adult life putting the two ends of toothbrush holders together, “going postal” would take on new meaning.

Would it be so difficult to discuss with the child that has significant disabilities what really interests them? If the child’s communication system is lacking (and yes, I am assuming that the children have some sort of formal communication system BECAUSE IF THE SCHOOL SYSTEM IS DOING THEIR JOB, the children will), how about observing what activities make them the happiest, and then translating that into possible employment opportunities? For example, my Ashley loves plants and flowers. Why not turn that love into a career option by teaching her to care for plants? She could then work in a greenhouse or florist.

Yes, I think the next soapbox onto which I step will involve career choices for people with significant disabilities. I need to work on this before Ashley enters the job force. Otherwise, she will rip up and burn all those papers you had her collate for stuffing into envelopes, or she will tell you just where to stick all those toothbrush holders you have had her assembling.

Move To The Back Of The Bus

Ashley was reluctant to get on the school bus this morning. She has very definite preferences for the type of people she likes, and the current set of bus driver/bus aide does not fall into the ‘like’ category. But like most of us, she needs to learn how to deal with people she may not like. It’s a fact a life.

After an insistent nudge from me, she decided to step up to the bus and move to her seat. As is my usual custom, as soon as she stepped up, I told everyone to have a good day and turned to go back into the house. I was in the house for a few minutes gathering my work paraphernalia and saying goodbye to my oldest son. When I left the house to go to my car, I noticed the bus was still at the end of our driveway, and that the driver and aide were both standing over Ashley as she sat half in – half out of her seat.

I went to the bus, waiting for the driver to open the doors (parents are usually as welcome on a school bus as the norovirus in a daycare center), and then walked up to Ashley. The aide was softly saying over and over again “Ashley, you need to slide over in your seat.” The purpose of this blog entry is not to discuss how thickheaded the aide was being – I did that earlier this week. The purpose is to share an observation about how the students were seated on the bus.

Keep in mind this is “special transportation”, meaning the only kids on the bus are the ones who will be segregated into their “special classrooms” as they arrive at school. Approximately 15 children were on the bus. The thing I immediately noticed is that each one of them had their own row of seats – no child sat next to another child. What the hell is up with that?

First the school district keeps my child in segregated “special” classrooms. Then they make her eat lunch, not with whom she chooses, but still with the other students in her “special” classroom. That is followed by adapted physical education, another way of saying continued segregation. And forget ever taking part in performance programs with the children who aren’t special. So, when I saw that on the bus of “special” children, segregation is taken one step further, my blood started to boil.

Can’t I even go one day without seeing a blatant display of disability prejudice? Apparently not…