Information for parents of disabled children

Thursday, December 30, 2010

Parents of autistic students suffer anxiety disorder and depression at higher rates.

Dont PanicImage via Wikipedia A study indicates in black and white what parents raising autistic kids have known all along. It's really hard. After my own diagnosis with panic disorder, it became obvious to me that we couldn't be the only ones, so I asked around. Many of the parents we know are taking medications for anxiety or depression.

The root of the problem lies in the constant alertness a family dealing with autism has to maintain when on the severe end of the spectrum or going through a difficult "phase" of a child's development. In our case, sleep deprivation has played a significant role. Having a child who doesn't sleep means parents can't sleep.

These are actually good things to know for educators dealing with parents of students who have autism. Their problems aren't like your problems. You worry about picking up your dry cleaning. They have to restrain kids from jumping in around every puddle or lake or fountain.  In our case, once I fell asleep after 72 hours straight of no sleep or interrupted sleep. I dozed off sitting up on the couch, and when I woke up my toaster was on fire. I didn't fall asleep easily for a month. Prolonged lack of sleep affects behavior and thought in parents, as it will in anyone.

Studies have demonstrated that a lack of sleep impairs one's ability to simultaneously focus on several different related tasks, reducing the speed as well as the efficiency of one's actions.
People suffering anxiety and depression have different responses to all situations. A person with panic disorder can be triggered by a simple conversation or phone call from school. They become short tempered and can't communicate meaning effectively. Teachers dealing with parents suffering these conditions won't know the reasons for a behavior, but they could anticipate the possibility, learning to take nothing personally and slow the pace of a conversation to help a parent stay focused.

Educators have no choice but to deal with negatives in a child's behavior, but they can help by going to parents with positive suggestions fully developed and ready to implement, not just calling to report that little Johnny is biting again. Most of the time, and I speak from experience, parents have no idea what to do. Let them know you have an idea you want to try, explain it and get their approval. Problem addressed, and the teacher has given an incredible gift to a parent; the gift of solutions.

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Friday, December 17, 2010

T-shirts for education: the RISE Learning Center trade-off

What do we know?

At the beginning of the school year, RISE Learning Center in South Indy sent home free shirts to the student body. While that may sound like an awesome deal, parents didn't react well.

The 175 student school routinely has problems with service delivery, say the parents of the students there. Given the $10 million shortfall in the Perry Township school district, parents were astounded at such largess from a flailing school.  A few parents looked into the purchase made by principal, Dr. Tim Smith.

What they found was astounding; Dr. Smith had ordered the shirts from his own t-shirt company, Quality Ts. The T shirt company operates under TWS Enterprises in the Carmel area and allegedly employs a teacher and job coach from the school in their spare time. The sale generated complaints to RISE and was reported to authorities. There has been no word on a resolution of the allegations.

Parents fear this is the signal of a giant ethics problem at the school. For most of the school year, they've struggled, they say, with case conferences and obtaining services for students on the mild to severe end of the disability spectrum.
AASA's Statement of Ethics for Educational Leaders
An educational leader’s professional conduct must conform to an ethical code of behavior, and the code must set high standards for all educational leaders. The educational leader provides professional leadership across the district and also across the community. This responsibility requires the leader to maintain standards of exemplary professional conduct while recognizing that his or her actions will be viewed and appraised by the community, professional associates and students.
The educational leader acknowledges that he or she serves the schools and community by providing equal educational opportunities to each and every child. The work of the leader must emphasize accountability and results, increased student achievement, and high expectations for each and every student.
To these ends, the educational leader subscribes to the following statements of standards.
The educational leader:
  1. Makes the education and well-being of students the fundamental value of all decision making.
  2. Fulfills all professional duties with honesty and integrity and always acts in a trustworthy and responsible manner.
  3. Supports the principle of due process and protects the civil and human rights of all individuals.
  4. Implements local, state and national laws.
  5. Advises the school board and implements the board's policies and administrative rules and regulations.
  6. Pursues appropriate measures to correct those laws, policies, and regulations that are not consistent with sound educational goals or that are not in the best interest of children.
  7. Avoids using his/her position for personal gain through political, social, religious, economic or other influences.
  8. Accepts academic degrees or professional certification only from accredited institutions.
  9. Maintains the standards and seeks to improve the effectiveness of the profession through research and continuing professional development.
  10. Honors all contracts until fulfillment, release or dissolution mutually agreed upon by all parties.
  11. Accepts responsibility and accountability for one’s own actions and behaviors.
  12. Commits to serving others above self.

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Thursday, December 9, 2010

Sped news

Inclusion 'can be abuse'
Report by BBC discusses downside to full inclusion without proper accommodation.

Parents struggle with budget cuts and Article 7

soldiers and sailors monument in downtown indyImage by chris.corwin via FlickrIndianapolis' South side schools are all reporting huge shortfalls this year, thanks in part to state cuts, and parents are already experiencing cuts. In one case, the case conference committee was not reconvened to take away aids in RISE Special Services coverage area. One on one aids seem to be disappearing across the board in RISE Learning Center on Shelby Avenue.

It's important to be wary of sweeping changes to a child's program without warning. First, it's not legal to do it without convening the CCC, and second, changes require proof of some kind that they are warranted.

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Tuesday, November 30, 2010

Getting a program

A special education teacher assists one of her...Image via WikipediaA program is the key. When folks start out on the road to a special education, it's important to know what you can expect. Good programs should contain three things: data, flexibility and room to grow.

But the greatest of these is. . . Data. It should produce tangible statistics on a child's progress.
From a parent's prospective, a program without data leaves you out of the loop on your student. It's the river from which all educational decisions flow. Not knowing the results of a child's day to day activities is the same as sitting in a dark room and trying to describe the furniture from memory. You won't remember it all, and it's likely you missed something on your first look.

A program with wiggle room lets educators change the pieces without sending an autistic child into shock from too great a change at one time. Structure can help with that. Administrators can sometimes suggest programs that can be adapted to a student's changeable needs.

 Long term thinking lets parents and professionals in the field look toward the future and plan for developmental milestones. Overall goals allow parents to choose a path most likely to get them where they want to go. Whatever your goal, you should think big, maybe bigger than you can expect. That's fine. 

Thinking big and long term could get your child the next best thing to your ideal. A non-verbal child would have an ideal long term goal: communication. So verbalizing communication is the goal, but should they learn to sign to communicate you got the next best outcome. The learning disabled child with Aspberger's might want to go to college. That goal could get them the best high school GPA and result in excellent job training, even if the ultimate goal of college doesn't happen. It's easier to prioritize steps to these goals once you have them, rather than cobble together a step by step program one priority at a time. The overall goal gives you room to grow your student's program, to expand their abilities.

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Saturday, November 13, 2010

Who's predjudiced against disabled kids? Not us.

A young girl kisses a baby on the cheek.Image via Wikipedia
Autism, as any parent who has gone through diagnosis and reached a severe disability can attest, is one long chain of obstructions and missing pieces. It's usually the missing pieces that cause the obstructions. When they don't make eye contact, it becomes hard to decipher what they mean or what they want from a parent. When children don't speak, they can't tell you what they like, who they are or why they did that. We noticed the holes first, and then later we saw the problems as they grew, and we ran off to the doctor hoping to fill those holes. Really, let's be honest. Early days are where we hope that it ain't so. We want them to be able, to be strong and live a full life rich with promise.

But doctors aren't the answer with autism, at least not yet. So, parents listen while professionals tell them in broad strokes what's wrong with their child, what they won't do in all likelihood and how to find resources to help the family cope with the disability. Once parents leave a doctor's office with a dazed look on their faces, they have to choose to make peace or make war with the disorder. They will spend years looking for ways to get to the child inside, some of them with amazing success. Some will work in vain, and never get to the place where they don't have to worry what will become of them, who will take care of them.

Why is autism, why is disability, so devastating? Perhaps, because in our culture we worship ability. We deify captains of industry, Olympic athletes and prize winners.  We celebrate success and reward it. Conversely, we may devalue those without. Let's not kid ourselves, we certainly devalue those without ability.
The homeless man standing on the corner of Market Street. The uninsured single mother who didn't finish high school. The unemployed veteran who can't keep it together on the job since that last tour. There are few excuses we accept as a society for a lack of productive ability. Never mind that the single mother works two jobs and still can't make ends meet, and never mind that the homeless man was abused horribly by others in his lifetime. It's not a good reason for not trying now, right? Individuals who overcome, pull themselves up by their bootstraps, are the deserving. So what if they can't? Can't, as in, do not have the ability.

During a school board work session here in Perry Township, I listened as the allocation of special education stimulus funds were discussed. Shockingly, Gwen Freeman, a Perry school board member and candidate on the Take Back Perry Schools ticket, expressed her concerns that money in the general fund should not be used for the new REACH program aimed at the higher functioning, emotionally disabled of Perry Township. She wanted to be sure that "children who do work hard and do succeed have access to the funds they need". As a mother, it's a statement that struck fear into my heart with its implications. Children with emotional disability "choose" their behaviors, therefore it's their responsibility to meet the benchmarks. She didn't seem to get that it's our responsibility to get them there at all. Though she had the grace to look embarrassed by her remarks (when they were explained to her), it stuck with me, even though I'd encountered discrimanatory remarks about the disabled before that night. It worries me to this day that there are those like Mrs. Freeman in positions of authority over my child's education and its funding.

 Persons in power reflect the values of a society, even a corrupt one sometimes. So as Americans run through the debate over health insurance and whether it's a right or privilege, and run around on TV calling everything and everyone retarded, I wonder sadly if we aren't showing clearly that we value ability. You deserve to be respected based on level of ability. Individual health is wrapped up in the ability to pay for it. Are these the values of our society? And what happens to my son in such a society?

It's a worrisome train of thought, but the questions need to be asked. To truly effect social change, it seems likely that first we need to address social attitudes.
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Wednesday, November 10, 2010

Hair pulling moment

Sometimes I like to do a more personal post. Our family has struggled with behaviors in school for the whole school year thus far, and it finally culminated in a case conference. Personal note, I dread case conferences.

Conflict isn't an issue for me, but I get pretty wound up at injustices. One of my biggest frustrations is that I so often have to be the catalyst for change in my son's education. One would expect that to be the professionals in charge. Our boy needs a new program, and I'm usually the first one to say it. 

He needs data collection and new methods. He needs more one on one help to conquer out short term eruptions and move us past it. He needs focus. Unfortunately, it feels like so many experience the frustration of knowing individual plans, individual kids,  don't get individual focus.

Because I'm watching parents who are uninvolved and seeing their kids education continue in a rut, without results to back up the plan, I know it can happen. If parents don't become the catalyst, children slip through cracks in the system simply because it's policy not to rock the boat.

While self-advocacy is essential for families to learn, it's sad that they have to learn it. Isn't it? Shouldn't special education students have plenty of advocates to go round?

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Thursday, November 4, 2010

Case conference recordkeeping; what should you keep?

An early blog article on 15 minutes discussed keeping a notebook just for your conference, to keep and take notes and to organize anything you may be given. Another possible time saver for a family is to make your own report.

It's simple to make up your own form to document all that occurs once the case conference begins. It may sound stupid, but date everything. This gives you a frame of reference for when particular events occur.

Be sure to document each attendee and if they were excused for any amount of time. This gives a parent a sense of who was there and said what. It also helps to keep the names with the faces.
List the issues you wish to discuss. This will be particularly helpful during the conference, keeping you on track to discuss each concern and ensuring you get to them all in good time.

Parents might find it helpful to allow space for listing what was actually discussed, in case the conference gets away from the participants. It helps you track weak points in your own conferencing style as well. While we love to hear great things about our kids, there's only so much time to talk.

Leave space for the outcomes. What was decided today and how will we implement it? Later on, it will be useful to have something to refer to when you discuss your conference or decisions made there. There will be no doubt in your mind what agreements were reached and when because of your thorough dated notes.

Keeping copies of a form makes for easy prep. You can grab the form and stuff it in the file on the way out the door, and always have clean notes from your conference.

Wednesday, October 20, 2010

Involuntary suspensions and Autism

An icon illustrating a parent and childImage via Wikipedia
A little known fact is that any time you are called to your child's school because of behaviors and asked to take them home. It's a suspension. What this means is that it's inappropriate to keep a parent on speed dial waiting for the next blow up. Oh, it happens.

What are the choices for parents? It's tricky. You could refuse to pick them up, but this leaves your child in a situation that is obviously not working. You could go get them. In this case, a parent can ask for documentation that they were asked to get their child. That's key to the next step; fixing the problem.

Warning Signs

When a parent is called for a fever, it's a sign that a kid is ill and needs rest, maybe some soup. When you get a call saying, "we can't handle this kid". That's a sign too. It's a clue in to a bad placement or a need for modification.

The first thing to look at is the data. Behavior charting can offer big clues for parents. If there's a pattern, you can see it. Remember that patterns can be found in the staff present or absent, as well. Behavior charting should already be done each day and ready for the parent at any time. It should be easy to read and understand, and it should be complete.

Looking at our child's environment is important. If they are already in the most restrictive environment, what changes can we make that will get them back in the classroom and learning again?
Look at staffing, are there enough? Too many? Are they trained in your child's disability?

Take Action

Time is precious in the classroom. When we see a pattern of classroom removals (in school suspensions) or involuntary suspensions, it's already time to take some action. It is important to determine the least restrictive solution. In some cases, a new placement is in order. Others would require a one to one staff member, until documentation proved no more need for it.

Missed class time is a tragedy for any child, however, in the world of special education it's a warning sign. When a child isn't fitting into a classroom anymore, something must be done quickly to get them back on the road to success.

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Thursday, October 14, 2010

Transition Fair at Rise Learning Center.

This event is a great resource for all parents, but a must for those of us approaching the teenage years. It's run by a dear friend, Joni Atkinson. She's been doing this for 23 years and taught me almost everything I know about transition. Her Facebook explains:
The transition fair has a variety of different booths for parents of students both young and old to gather vital information for their student to be successful when transitioning out of school. There are people from Vocational Rehab, BDDS, SSI, Medicaid, Stress Centers, Supported living, Supported employment and the list goes on and on. This information is so vital to get out to all parents of students with special needs. Anyone that you know that could benefit from additional services should partake in this event. Everyone has a chance to meet people and develop a bridge of communication. Please spread the word to let everyone know that this event can be very beneficial. We will also have a spaghetti dinner that is $5.00 for adults and $3.00 for kids. Please rsvp asap!!!!
The Fair happens Tuesday October  26th at 5 pm.
5391 shelby here in Indy.
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Wednesday, October 13, 2010

Schools are crunching the numbers in Perry Township.

Crane Paper Company in Dalton produces the pap...Image via Wikipedia

Here in Perry the outlook is bleak. With the money crunch, there is a temptation to use money as a factor in case conferences. They cannot give in to this temptation though, because it would be wrong. Further, it violates a law. You know the one I mean.

Things to remember in a money crunch:
  • Cost is never a factor-Never.
  • Removing services should require as much data as assigning them.
  • Documentation is king!
  • Determine strategic goals, then discuss staffing.
October is the beginning of the most wonderful time of the year.  Fighting a recession is not a good reason to cause a regression. Write your goals before you write your checks.
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Immunization mandates versus exemptions- no clear winner.

Woman receiving rubella vaccination, School of...Image via Wikipedia
Most of us grew up with the needle and those periodic torture sessions at the local doctor's office. Since the controversy surrounding immunizations grew heated, no one has been unable to escape the hostility surrounding the subject. This year's addition of new vaccine requirements have heated it all up again, particularly in the special ed. community.

Indiana's Exemptions

Indiana has two kinds of exemptions- religious or medical. Parents have to update these exemption letters yearly with their child's school. A medical exemption requires a doctor to sign off on it. That's pretty rare. Even when contraindications are clear on packaging and manufacturers paperwork, a doctor is typically loathe to sign off on an exemption. Of course, there are doctor's who will, occasionally. Religious exemptions do not require proof, however, they do require the parent list each vaccine exempted, state a firmly held belief, and update them yearly with the school.

Herd Immunity
Herein lies the debate. Vaccine-injured families say the risk outweighs the benefit. No one denies the probablity of vaccine injury, even the vaccine creators, but many experts worry about the public risk if many more opt out of the vaccine schedule. Herd immunity is when diseases don't strike individuals who are not immune to them because most in a society are immune, usually through vaccination. Experts frequently worry that an outbreak of any given "eradicated" disease is one international flight away.

Vaccine Injury
Vaccine mandate opponents are not one simple group, but rather a large coalescence of different types of groups who believe, or know, that vaccine played a part in the injury of someone they loved. The most notable of these involved the Mumps, Measles, Rubella shot, commonly called MMR. It contained a mercury-based preservative called thimerasol that many believed unnecessary. The makers of vaccines did finally give in to the public outcry and remove the ingredient from most vaccines, leaving only influenza containing thimerasol. Recently, the Center for Disease Control sponsored a study finding thimerasol was not the cause of autism in children. Autism isn't the only potential injury, parents say.

Severe fevers, seizures, and rash, among many other possible symptoms, can result from vaccines. While immunizations are tested like any other drug, there are many reports of injury reported each year. This is done through the Vaccine Adverse Event Reporting System or VAERS.

So what's more important? Doctors typically answer, "the greater good", while parents have another more personal answer. They want to protect their child. Society's difficulty isn't deciding who's right or wrong in the debate. What we have to determine is who is most right? Even when that's done, someone may still lose.
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Medical systems, education and juvenile courts; filling the doughnut hole

school friendsImage by woodleywonderworks via Flickr
A common occurance in Indianapolis, perhaps around the country, for special needs kids is slipping through the cracks. Usually when we hear that phrase, we think of kids in schools getting failed forward, moved on to the next grade without the performance to back it up. However, there is a much bigger crack in the pathway special needs kids are walking these days, and it begins with behavior.
As any parent can attest, behavior is a challenging aspect of developmental disorder. Quirky, jerky movements are the commonplace assumption for those outside the circle of a family dealing with disability, but this is the mildest kind of behavior. Aggressive behaviors happen in households all the time; hitting, pinching, biting, kicking. These behaviors can start a kid climbing the ladder of more and more restrictive educational environments. What happens when the ladder ends?
Professionals call it the doughnut hole. Just like Alice, a kid can disappear in that hole.
Let's Suppose . . .
A kid has severely aggressive behaviors. He's moved from general education to a special education inclusion classroom. He can't make it there, so he's off to a separate facility like RISE Learning Center or Damar, a live-in facility on the southwest side. He eventually lands in a six week program to work on his behaviors and tweak the medication. Medicaid or Insurance pays for it because a doctor sent him.
This child returns to the classroom after some improvement where he gets into a fight, and there have been a lot of fights because he has an emotional disability. Here's the trap; remember that medicaid or insurance already paid for a six week program that didn't work, so the school is left to make the call. However, if they do, the school district pays. This makes schools hesitate to make the call.
What will inevitably happen is a round of suspensions and placement changes while parents and teachers alike pull their hair out by the roots. This will go on until someone pulls the plug. That someone is usually a juvenile court judge. The child will then be placed in an extended treatment program using department of correction funds.
What's the solution?
Easy answers are hard to come by. Our medical system could change the way they do business and pay for unlimited hospitalizations, but that isn't likely, nor is it guaranteed to work. Our juvenile justice system actually has no choice by the time they are involved. Some action is required. That leaves the school, and funding just doesn't grow on trees.
We have to find the solutions and methods that work if we hope to close the doughnut hole. General education inclusion has to become far more successful than it generally is by utilizing peer training and behavior interventions that work in practice, not just in theory. Schools systems will have to become more aggressive in their inclusion programming, perhaps even better staffed.
Schools will have to recognize the importance of social training, especially for children on the autism spectrum. Right now, in Indiana schools the typical IEP reads that social skills training happens twice a week for fifteen minutes. It's important to realize that social skills training can happen all through the day wherever the opportunity presents itself, and educators have to take those opportunities.
It is inevitable that tax dollars will be spent on the children who slip through the cracks, but schools can intervene early in a child's education to stop that spiral into the justice system through comprehensive intervention. Until society finds a cure for every developmental and neurological disorder, there has to be a plan. Education is the best shot at early identification of need and delivery of service. The money Americans save by early investment in special education is unlimited. Diagnosis isn't a get-out-of-jail-free card, and adults with disabilities who commit crimes or pose a danger to others will be housed somewhere in our system. Educational intervention may be the only chance they have to avoid the revolving door of the justice system.
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Wednesday, October 6, 2010

A word on inclusion from Wisconsin

Mudd Hall, Johns Hopkins University, Baltimore...Image via Wikipedia

There are no comparative data available on special education students' academic gains, graduation rates, preparation for post-secondary schooling, work, or involvement in community living based on their placement in inclusive vs. non-inclusive settings. Therefore, an accurate comparison between separate programming and inclusive programming cannot be done.
The following is a brief review of a number of studies of various inclusive strategies. There are a number of reviews and meta-analyses that consistently report little or no benefit for students when they are placed in special education settings (Kavale, K.A., Glass, G.V., 1982; Madden and Slavin, 1983). However, in 50 studies comparing the academic performance of mainstreamed and segregated students with mild handicapping conditions, the mean academic performance of the integrated group was in the 80th percentile, while the segregated students score was in the 50th percentile (Weiner R., 1985).
Using this evidence, inclusion proponents claim that segregated programs are detrimental to students and do not meet the original goals for special education. Recent meta-analyses confirm a small to moderate beneficial effect of inclusion education on the academic and social outcome of special needs students. (Carlberg, C. and Kavale, K. 1980; Baker, E.T., and Wang, M.C., and Walberg, H.J., 1994-95).
Another study assessing the effectiveness of inclusion was done at Johns Hopkins University. In a school-wide restructuring program called Success For All, student achievement was measured. The program itself is a comprehensive effort that involves family support teams, professional development for teachers, reading, tutoring, special reading programs, eight-week reading assessments, and expanded opportunities for pre-school and kindergarten children.
In assessing effectiveness, a control group was compared with the students in Success For All programs. Comparative measures included:
  • Woodcock Language Proficiency Battery (1984)
  • Durrell Analysis of Reading Difficulty (1980)
  • Student retention and attendance.
Comparisons were made at first, second, and third grades. Students identified with exceptional education needs were included in all comparisons. While assessments showed improved reading performance for all students, the most dramatic improvements occurred among the lowest achievers. In spite of the fact that these inner city schools have normally high retention problems, only 4% of the fourth graders in the experimental group had ever been held back one or more grades, while the five control schools had 31% who had failed at least one year.
There was a similar finding in the comparison of attendance rates. The research also found the best results occurred in schools with the highest level of funding. They concluded that when resources are available to provide supplementary aids, all children do better.
The primary importance of research on Success For All is that it demonstrates that with early and continuing intervention nearly all children can be successful in reading. Common practice in compensatory and special education is to identify children who have already fallen behind and provide remediation services that last for years (Allington and McGill-Frazen, 1990). Research on Success For All and other intensive early intervention programs such as Reading Recovery (Pinnell, 1991) and Prevention of Learning Disabilities (Silver and Hagen, 1989) suggests that there are effective alternatives to remedial approaches.
While researchers are cautious in their conclusions, there are some positive signs. In particular, students in special education and regular education showed several positive changes, including:
  • A reduced fear of human differences accompanied by increased comfort and awareness (Peck et al., 1992);
  • Growth in social cognition (Murray-Seegert,1989);
  • Improvement in self-concept of non-disabled students (Peck et. al., 1992);
  • Development of personal principles and ability to assume an advocacy role toward their peers and friends with disabilities;
  • Warm and caring friendships (Bogdan and Taylor, 1989).
The final issue shared by proponents of inclusion relates to cost-effectiveness. A 1989 study found that over a fifteen year period, the employment rate for high school graduates with special needs who had been in segregated programs was 53%. But for special needs graduates from integrated programs the employment rate was 73%. Furthermore, the cost of educating students in segregated programs was double that for educating them in integrated programs (Piuma, 1989).
A similar study by Affleck, Madge, Adams, and Lowenbraun (1988) demonstrated that the integrated classroom for students with special needs was more cost-effective than the resource program, even though achievement in reading, math and language remained basically the same in the two service delivery models.
It is normally not my practice to cut and paste, but this information is hard to come by for parents. It's especially hard to find unbiased resources like the Wisconsin Educational Association Council who report just what is. 
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Finding the evidence in evidence-based instruction for Indy natives - Indianapolis special education |

Finding the evidence in evidence-based instruction for Indy natives - Indianapolis special education |

Rise Special Services moves toward interlocal amid teacher and parent concerns - Indianapolis special education |

Rise Special Services moves toward interlocal amid teacher and parent concerns - Indianapolis special education |

One of my articles on

Thursday, September 30, 2010

Workin' for a livin'

Image representing Examiner as depicted in Cru...Image via CrunchBaseThis week starts a new writing endeavor. I have become the Indianapolis Special Education Examiner for It isn't simply another blog.

So stop by and see me at my newest web home.
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Wednesday, September 29, 2010

Athletics For Everyone?

Sports icon for PortalsImage via WikipediaWeeeelll . . . Maybe. Perhaps. Kinda.
Schools have a lot of obligations when it comes to special ed. students, but is an inclusive extra-curricular one of them. Obviously, a student who is able must be allowed to participate, or the school faces the music. Schools don't necessarily have to consider after school sports as part of a Free and Equal Public Education.
However, there are perhaps situations that could require a child's IEP to include such activities according to the professional website, an online resource for school leadership. The wisdom presented in their article, Boosting Inclusion for Students with Disabilites, suggests appropriate moments exist for schools to take on the responsibility.
"In some circumstances, however, participation in athletics and extracurricular activities may be necessary for the child to benefit from the child’s educational program. For instance, a student with an emotional disability may require participating in athletics to develop a positive self-image and acquire social and emotional skills."
This, they suggest, would be an appropriate moment to include sports participation in an IEP. As a parent sitting down for a case conference, this may be a hard sell situation, meaning there could be some resistance. Bring plenty of evidence to the discussion, if this is your goal. Teachers, coaches and administrators may need some convincing. More than that, you have to be certain yourself that it's something your child really needs.

Do schools have to provide this? Not necessarily, but there could be circumstances where they would. Behavior Plans and social skills training need to be firmly married to any after school activity to truly justify its inclusion in an education plan.
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Monday, September 27, 2010

Fighting Frustrations; When the System Seems to Be Fighting You

Long jumpImage via WikipediaWhen working toward a negotiable goal with your child's school, it's possible to become frustrated, and irritated, and. . . you get the picture. Some resistance can become lots of resistance, and your sunny disposition goes right out the window because this is your kid we're talking about here. There are ways to break through that resistance and come out on the other side with relationships intact, as well as an acceptable IEP. It starts with you.

Know Your Stuff

Research your positions, so that you can communicate that position clearly and without snarkiness. We seldom snark when we have facts and figures to quote. Unfortunately, this means we get homework. Pull out the old IEP binder and get to work. The safest way to start, in my opinion, is to decide on your deal-breakers.  What issue will force you up and away from the table? Once those are prioritized, you'll know where to start researching.

Know Your Enemy

Let me reassure you that it's usually not an enemy, more like an obstruction. It's not a good idea to assume an administrator is not "on your side". Admins are very often worker bees in the hive. They have job descriptions and requirements. Seldom are these people your enemy, but neither are they your friend. These are professionals. Once you really grasp that, it's not a long jump to the next logical conclusion. So are you!

As a mother or father, you have the most diverse job description known to man. You are the resident expert on your child. The data you have on this particular student is invaluable to the school's staff. They need your input.

Treat this like a business meeting. Wear a suit if you have to! If you come at this from a professional frame of mind, it will help you be the advocate you need to be. If you are losing your temper, stop the meeting. Ask for a break or a reschedule. The law gives you the right to do this. 

Know Thyself

Maybe this makes me the cockeyed optimist in the room, but I really believe most parents can do this on their own. It takes time and work and gumption. It's hard, still is it really harder than what we do already? Any one of us can do this

Degrees and doctorates are not required to get a diagnosis in the family. All it takes is breathing to get that news. Most diseases and disorders are no respecters of persons. As a parent, our limitations are what we say they are. How often do we tell our child with special needs 'they can do it'? Take a moment to look in the mirror and say it to yourself. After all, you've gotten this far, right?
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Tuesday, September 21, 2010

Squeaky Wheels

The complaints process.
Forms here

When you've tried the usual avenues, it sometimes comes down to the complaint process which is simpler than you'd think. Fill out the forms available above. Gather your evidence and fax or mail it in. That's the process, but what about the other stuff?

You know, the making people mad and the seeing them again after. It's the equivalent of a nightmare date where you hope you'll never see the guy again, but you have to go to work tomorrow. In this post, you'll find a sheet to offer you some tips.

The bottom line is; this is all just business. You are seeing to the business of raising your child, and that makes nothing personal unless you want it personal. It's about them. If it comes to complaints or due process, then so be it. As long as parents have exhausted all other routes to resolution, this is a totally appropriate and sometimes needed step.

Monday, September 20, 2010

As I See It: Advocating From a Parent's Perspective

It's been a couple months, and school is once again in full swing. My topic has to inevitably turn to social skills. Every parent I've consulted with over the last few months has needed help with determining social goals or getting the school to acknowledge the need for training for their kiddos. How much should we get? It should be the question, yes, but, more often, the question becomes; how much can we get?

 Most IEPs contain the same language and nearly the same amount of SST, 15 minutes twice a week. Of course, that's not sufficient. A recent study determined autistic children need a minimum of 30 hours a week. That's just not going to happen, right? So, parents, get ready to work the partnerships.

It's imperative to get your teachers on board with on the job training for your child. During the day, the social opportunities are endless; standing in line in the cafeteria, going to lockers, or working with the teacher on spelling. These are all social interactions that could be capitalized upon. The trick is convincing others to use these teachable moments. 

It makes sense to prioritize the skills most needed and work on those. Is your child not understanding others' verbal or visual cues? Well, imagine how that translates into a child's academic performance!

Teachers, especially in general education, may not get it. They may not understand that it isn't willful disobedience, so much as misunderstanding. Talk to them about the medical side of your child's disorder.  Once everyone is on the same page, it's so much easier to suss out solutions.

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Thursday, July 1, 2010

I'm thinking now.

The floor of the New York Stock Exchange.Image via Wikipedia
This has been a sore subject for me lately because special education is a discouraging business, and I don't know how much energy and time to put into it. It is what it is. It's local politics wrapped up in egos where, as in any business out there, some people love their job and the ones they serve and some just don't. It's a lot of work to come to the end and see only a lot of compromise.

That's what we have here; a lot of compromise. And a whole lot of excuses for poor education.

We don't have the money to do what we want. It's all about funding. Okay, then why didn't we do it when we had the money? It's not the job of public education. Okay, then who's job is it? I need to talk to that guy. Teachers don't have the training they need. Okay, how do we fix that? On and on it goes.

And that's the crux of my problem, this is too big for one person, and it's not a problem the majority of American's care about at all. We care about other things, and I understand this isn't the most pressing problem we face, but when does a Mom say "enough"?  When is it too much to deal with administrators who don't give a damn and school boards who want to forget your child exists? When are the rights of your child too costly to fight for anymore?  I'm thinking now. I'm thinking Monday.

There's only so much fight in anyone, and I'm reaching a limit. That impending school start date is looming ahead of me, and it's anyone's guess whether I'll be able to go another round this year.
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Friday, June 11, 2010

Makin' WAVES at the Y

(caption from original) Lifeguards at work on ...Image via Wikipedia
Waves started at the Baxter Y yesterday. Swimming lessons for the disabled are not just fun, but essential. There isn't much available for our kids in the Summer, but this program always has a waiting list. Now, I know why.

It was amazing. A one-on-one lifeguard for each participant, participants of every age group and disability, and the incredible Y facilities are the recipe for the perfect Summer activity for autism. Non-member cost for the program is approximately 150.00. It runs for 8 weeks.

This Y also offers sensory motor sessions, but, sadly, there are never enough takers for the class to be held.
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Thursday, June 10, 2010

Decatur Township Keeps Superintendent

Alabame state welcome signImage via Wikipedia
There are somewhat conflicting reports tonight that Don Stinson has turned down a job offer in Alabama to stay in Decatur Township. The Indystar reported that he "felt his mission was here".  The conflict appears to be in the email to the Alabama school district who offered the position in which he cites personal reasons for staying in Indiana.

So, at the moment, the Governing Board remains the same.
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Monday, June 7, 2010

A Study for Everything!

New Study on Juvenile Justice and Special Education


A must read for Indiana Residents

RISE Interlocal

This is copied from the report published on RISE Special Services website:


Mr. David Day, Esq., Church, Church, Hittle & Antrim, offers the following information
dealing with the basic legal standards for providing services through a Joint Agreement
or an Interlocal Agreement.



DATE:  JULY 1, 2009


RISE currently operates under a joint services and supply agreement that was last
updated a couple of years ago.  The statute authorizing joint service and supply
agreements essentially allows schools to exercise jointly any power that they could
exercise individually.  

IC 36-1-7 provides an alternative means for more than one political subdivision to
exercise jointly a power that they could exercise individually.  This statute authorizes
Indiana political subdivisions (this term includes school corporations) to enter into what
are called “interlocal agreements” to accomplish this goal. The interlocal agreement, like
the joint service and supply agreement, contains terms concerning the duration and
purpose of the enterprise, the manner of financing and staffing and the methods to be
employed in terminating the agreement.  In addition, the statute provides for a variety of
ways to administer the agreement including the creation of a separate legal entity.

Unlike a joint services and supply agreement, however, which must designate one of its
participating school corporations to administer and supervise the joint program, the
interlocal agreement can either (1) delegate funding authority to the treasurer of one of
its participants; or (2) create its own funding authority.  If the latter option is chosen, then
the agreement must be approved by the attorney general.  Also, because this interlocal
would carry out the authority that is subject to control by the state, the State Board of
Education would also have to approve the interlocal here.  Neither of these approvals
should present significant obstacles.

This poses some interesting questions because we could do this differently than we do now, but will we? Our current JS&S names Perry Township as the legal representative (and I understand why they'd run the other way from that), but it's possible to continue as we have begun. While it seems to be the intention of RISE administration to move to it's own legal entity, it isn't strictly necessary or necessarily the wish of all the townships to do so. 

My understanding was that we would have to become our own entity. That isn't exactly true. SO it makes me wonder who's leaning to what and when it will all be revealed. The politics of the Interlocal boggle the mind.

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Don Stinson, looking for love?

Rainbow over Southside WorksImage by lemonad via Flickr
The local blog Had Enough Indy? reports that Dr. Don Stinson of Decatur Township is in the process of changing jobs. I'm pretty familiar with his attitude toward the special ed. students in the townships. We're back at square one when it comes to political jockeying and local interests because the likelihood is that a school board may want to find someone who will follow their own vision. Vision these days seems to be limited to cutting corners.

Special education in the townships is already highly political and contentious. With the interlocal storm brewing, it's a whole new Governing Board on the horizon for families in Perry, Beech Grove, Decatur and Franklin Townships. This is especially true if the school boards wash their hands of the interlocal and allow it to self-govern.

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Sunday, May 30, 2010

Documentation? Of What?

Oh, how often do parents feel this is how schools are responding to them when they ask for daily record keeping! Truth is that we're running into a lack of professional standards in Southern Indianapolis. I don't know about the rest of the state, but documentation here is overall dismal.

Parents can more effectively ask for documentation if they know exactly what they want. Today, I intend to walk you through a fictional scatter plot. It's written for little Johnny Smith:
We want to figure out why Johnny is getting all hitty with his teachers. The plot simply defines the activities of the days with corresponding boxes to be checked quickly. They are marked x for severe aggression, / for mild aggression, and blacked out for no aggression in that time period. You can quantify this, if you like going from 0 to 5 instances, 5 to 10, etc. At the top, you fill in blanks with student information. The respondent is the chart keeper or keeper's identity. When defining the behaviors, be concise and specific. In this case, aggression is further defined as hitting, biting and kicking.

What do we determine about little Johnny's day from the data before us? Well, he does NOT like lunchtime, and recess is no picnic. He had two days of near angelic goodness in the middle of the week. We have a pattern.

The teacher takes this data, or should, and can collaborate with others to determine why Johnny can't eat in peace. Did I mention Johnny's sensory issues? We should look at those. How are his relationships with staff? When the teacher really scrutinized Johnny's day, here's what she noticed.

The noise in the cafeteria really wound him up. He grew more agitated, until Sally, the T.A. working with him, got flustered and out of sorts. When really watching, she noticed more, like Sally really didn't seem to like Johnny and couldn't handle him with any sensitivity to his condition. Further, Sally had a cold for two days and missed school mid-week. Hmm. Did we just find two correctable problems?

Data helps parents track their child's condition, and it makes for excellent professional review. Parents may have to push like the dickens to get this in place and make schools adhere to it. But say you have a non-verbal student, how valuable would this chart be? These are standard tools, so if you meet resistance in the classroom, an explanation would easily be in order from administrators as to why this is too hard to implement. Honestly, how hard is it to check a box?
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Friday, May 28, 2010

All The Time In The World

Lonely Beach BallImage by JasonTromm via Flickr
Summer should be a fun break for everyone, right? Here it is nearly June. The kids are home, and I'm already tired. After three days of end-of-school meltdowns, I'm pooped emotionally.

The park was fun for the fifteen minutes we were there. The house looks more like a hurricane blew through than before. Hurricane Darrel is destructive. At least, a 4. The worst part is that I know he's losing time. I'm no professional. I mimic the professionals as much as I can, but I know the expertise I need is not at my fingertips. For three months, we're on our own.

Speech therapy is easy, at least I think it is. It's all the rest; challenging behaviors, sensory issues, and loss of all that precious knowledge we put in his head all year. That is the frustration I have as a parent when lawmakers and schools in one breath push professional intervention, and express in the next that the family has undefined and undetermined responsibilities to fix their kids. My favorite is the phrase used so often that "school isn't a cure".

Newsflash. For most of us, there is no improvement bordering on "cure". Nobody gets a cure with autism. Education is, however, the only viable treatment for autism we have which is available for most regardless of cost. It is our best bet for reducing the cost effect of so many disabled entering society at one time. It's the difference between a child completely dependent on one-on-one aids for personal care into adulthood and a child only partially dependent and able to perform basic self-care. School may not be a cure, but, when you have a child with autism, you sure miss it when it's gone.

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Tuesday, May 18, 2010

A Good Day for Change!

Teacher's DeskImage by Pikaluk via Flickr

Obama set to take on Teacher's unions

Jonathon Martin writes on this morning that teacher's unions may not hold the sway they have in past years. There is no question that the unions back Dems at 90 percentile range almost across the board. It's also true they are party faithful working the campaigns across the nation, however, in a fit of principle, it appears the president may be going a different direction in calling for teacher accountability and year round school years.

From a special education standpoint, this could be big news. Students with disabilities at this moment have an option that is rarely used for extended school year services should they regress on a regular basis and at much faster rates than their typical peers, which most of them do. It is, of course, expensive. Moving away from the agrarian calendar we now use would change all of that for a great many students. Of course, this change would mean longer breaks in the middle of the year and would require adjustments on the part of parents. Some Sped students would still need ESY during long breaks, but I suspect a large number would retain better and progress farther should the change be implemented. Our family relies on school as childcare to keep us both working which means, for three months out of the year, I'm on the bench. Many families with special needs would be on board right out of the gate. Single income families on the spectrum are so often not that way by choice.

The calls for accountability could change things for the better as well. Having an incredible teacher is like getting hit by lightening; when it happens, you feel it. It's also about that rare. Great teachers are talented and lucky is the family that finds one, but good teachers just aren't the standard these days, in part because the standard pay doesn't meet the cost of education for teachers and in part because of the protection of the unions.

Many teachers stop school with a degree in mild disability, leaving the mild to severe range of students working with an extremely small pool. Professional development costs money and is often the first thing to go. Training is cut short. So calls for accountability must also address the concerns of the unions while not allowing them to dominate the conversation.

It's a surprising turn taking on the unions pet issues this way. Critics of unions cite the big money the lobby throws into the pot at election time, likening their opposition of reforms to the behavior of big oil or the coal industry. One such website aimed at "exposing" the unions is

They state on their site, "There is no disputing that America’s teachers unions -- in particular, the National Education Association and the American Federation of Teachers -- are the most organized and powerful voices in education politics." As an involved parent, I find I can't dispute it. Our difficulties with Indiana special education find me often stumbling over the interests of the Indiana State Teacher's Association. I've even been warned not to take them on in a meeting because I "had no idea how powerful ISTA could be."

On the other hand, why do we have unions in the first place? The short answer is because education is steeped in local politics. Cronyism and closed door deals have dominated the entire institution, and unions were supposed to fight that. My observations suggest, however, that a union can become too locally politicized. This makes the union a prize to be sought in local elections which can be ugly and corrupt. Unions have a very specific function that may not be compatible with the goals of education. They may work well for individuals, but many, including myself, question whether they are good for society if education gets compromised along the way. Our president speaks the truth when he says we aren't competitive on the global stage.

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Thursday, May 6, 2010


It's a blessing....and a curse....100 yearsImage by Coal and Ice via Flickr
For some time now, I've dialed back my resistance of our school's administration. I've rooted for the inter-local and wished for its success. That inter-local isn't even here yet, and the disappointment seems inevitable. A wise woman once said to me in a training that your child's education doesn't have to be a Lexus, but the state has to give you a Ford at least. Well, Darrel is kicking the tires on a jalopy and wondering where it all went wrong.

There were big plans for ABA training. It never happened. Neither did TEAACH or anything else for that matter. We got a parent on the Autism Team for the township, and I was so excited. Oh, what we could do! Nothing. That's what we could do. Nothing happened.

 We have so much technology, so many programs, and so much we could use to make our kids functional. It wasn't a matter of cost. I know that will be the excuse given, but it's just that, an excuse. Implementing policy in the classroom usually doesn't cost a dime. The price is will-power. Orientation training for teacher's assistants who do the lion's share of the work, that takes time, but it's worth it. Autism training which is mandated isn't even happening consistently.  What does it all come down to? I have an answer, but it's not PC.

How the heck will we include the most severe students if we don't even give them comprehensive tools like sign language, PECS and behavioral training? The answer: we'll pretend we did. We put them out in a self-contained classroom or a general education setting and pray for divine intervention. One day, we'll be right back in that CCC discussing suspensions and change of placement. It's not good enough. Sorry, Indiana, but you are flunking out in special education.

Then to hear things from so many professionals and even advocates like "it's happening everywhere!" as if that excuses our failure to make it stop happening. Again and again, I've seen what true intervention can do for a child. I'm sick of being told it takes money! No, it really doesn't. It takes effort! If I can do it at home, you can do it at school for free.

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Wednesday, May 5, 2010

Best of Intentions

We seldom think of school administration as a high-flying career. One could easily imagine it as a thankless job with little reward other than the love and devotion of the families served by one's efforts. One could, but I don't. I've seen the hubris sometimes involved in the choice. There's a micro-chasm of power there, and sometimes, every now and again, individuals are attracted to that power.

In all my training as an advocate for special needs families and as a parent and employee of the school, I've been told again and again that the key to communication is knowing everyone in the room has the well-being of your child at heart. Employees of the schools, after all, went into this profession to help others. They love children. They want to help you.

How I long to believe! It just hasn't been our experience here in Perry Township. I have yet to figure out what the benefits are of being stingy with services and occasionally ignoring the law completely; however, there must be some kind of payoff. It happens far too frequently. Perhaps, it's prejudice.

I know Rain Man seemed cute and cuddly, but all too often disability is hard to understand and downright repulsive.  Put down the pitchforks. Wait till you see the reality of the "playing in feces" stage and tell me how you like it. I loved him through it because I'm his mother. Others aren't so motivated. There's some slobbering that can be encountered on the spectrum and lots of potty trouble. Students who vomit intentionally can and do happen. These things don't bother me because they are our kids. They belong to each and every one of us, and so do the hangups. It's our problem to solve, not theirs. It gets to some people.

The disabled also remind us of our own frailty. The fragility of the human body is a fearsome thing to behold. Perhaps, the negative experiences I've had with administration can be traced back to their own fear of mortality. Maybe it's all this complicated and this simple. I can't be sure, but my faith in the law and humankind is failing.

As a mom, I've seen too much to believe in the innate goodness of man. Fiscal conservatism often seems to translate differently to different people. To me, it would include not wasting money, directing it to services that are appropriate and valuable (like Special Education) instead of to the things that get us elected and do little good. To others, and if I'm honest, most others I've met who claimed that label, it is simply not having to pay for something that isn't your responsibility. That's where every man's conscience comes in and where I get nervous. My kid is no picnic and one day he'll be a very large, severely disabled man with two-fisted impulsivity issues. How will these people receive him? When his autism has drained me, where will he turn for care? And will those people be as unreceptive as his school has been? I'm not optimistic.

Inclusion in Perry Township is not done well or with much effort. Children out in the general ed. setting find very little compassion or understanding when they are inappropriately placed with typical populations, and I wish it was only the kids I worry about. I've encountered principals and teachers who just disliked a child for their autism, saying it's "an excuse". That principal couldn't understand that it was a reason, not an excuse.

RISE Special Services has one separate facility for the severely disabled student who can't go to their home schools, and I'm seeing the push. The end of that safety net for all involved nears by the day. Parents don't know it's there because they aren't told. When something goes horribly wrong in the home school, they may find out by word of mouth, and then it's a fight to get them in there. Parents who need this facility and ask for it are told they are "warehousing" their kid. However, that same kid may have just arrived from an environment where he was strapped down all day as my son was, and then they tell me I'm ruining his socialization. Please.

Instead of comprehensive intervention, preschoolers are directed to satellite programs with little training for the teachers trying to run them. Are there good teachers? Absolutely. They came that way. The township had nothing to do with it, and those teachers do not get the support or supervision they need from trained and competent administration. Often, the administrator has less clue than the teacher! Students in that separate facility are frequently farmed out only to return again when it was too dangerous to keep them out with typical peers. Many continue through their home school and age out of inappropriate programs. Thus, the population of that school diminishes each year, and the law suits abound.

What does it all mean? It means that we will shortly have blanket inclusion in the townships, and the choices for parents who have children who get violent during melt-downs or self-injure will get limited to keeping them home for school which limits them further to five hours of very expensive schooling per child each day. There will be incidents. Someone will get hurt. Where is the difference there with institutionalizing the mentally ill? Where is the fiscal conservatism in pushing the severely disabled out of the schools altogether to educate them at home? 

Currently, Perry Township has three environments for special education; general ed. classrooms, satellite classes located at home school locations, and Rise Learning Center, a separate facility focused on comprehensive intervention. If all those fail, you have the option of home-bound instruction.

Someone, recently said to me proudly of Indianapolis Public Schools where inclusion is the only option, " The disabled kids are there, and everyone just had to deal with it." That about sums it up. Yet, IPS doesn't have a spotless record or a good reputation. Could it be that they are using inclusion badly just as we are? Throwing autistic students into the population and saying, "Go!"is not inclusion. Inclusion involves peer education and social supports. It involves intervention and accommodation. Further, sometimes those things aren't enough, and we end up warehousing the child in an inclusion classroom.

Perry Township has got to get a hold of itself. Nothing changes, unless we change it. Parents have to organize and get involved. Learn about real inclusion and the options available to your child. On the other hand, I hear Johnson County is nice. Plenty of my acquaintances have taken that option, just move.

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