Tao of Stem Cells

The Tao of Stem Cells


I use this title to give reference to Aiden Crane's Dad, "Useless Tree" blog because after reading some of the entries on his blog, I found myself time traveling back to China during the 5th century b.c. Some of the details about China at this point in history are fuzzy. It has been a very long time since I time-traveled. In fact, it's been 20 something years.

"If you have a thing to shrink, you must first stretch it;
If you would have a thing weakened, you must first strengthen it;
If you would take from a thing, you must first give to it."

I remember this dream:

I see Lao Tzu (old man) is writing out his "five thousand characters" near the Pass, and I hear the comforting words below from Confucius saying we must love without discrimination even though  warring factions are brewing and warlords will be soon ascending upon this place of tranquility. 

I am weary of war. 

My body flies over the Himalayas to stop in India where Susrata is doing the first cataract operation and over in Greece where Alcmaeon of Croton is making the connection between the brain, blood vessels, and arteries.

I am carried further back to unrecorded time finding a person hovering over another person who appears to be dead. It appears this person is carving a sharp object into the dead human body. In the bushes, there is person hiding who gasps at what is happening and runs away. The person continues with the work at hand but is interrupted later by a group of people who are shouting. It looks like this person with the sharp object is trying to explain something but nobody is listening. He is engulfed by the sound.

I am weary of ignorance and fear.


I can't help thinking of  the horrible consequences  for the first person who performed an autopsy
 and how similar the situation is today for a young geneticist finding a way to reverse a mutation.

We ask where do we draw the line?

By drawing a line disconnecting the present from the future, the past from the present, or the past from the future,  we are disconnecting the flow.


"All the primitive forces of nature known to humans  appear to be flowing in one direction while forces driving the inquisitive nature of humans flow in the opposite direction. " ~ DH Saul

Where did my old blog go?

Who knows ... the old blog under http://elisabethsmom.blogspot.com still shows up in google searches and google crawls, I cannot access it so I had to create a new one until somebody finds the old URL ... I am still missing about 45 articles here and trying to rebuild the information that was zapped into cyberspace .... BTW Google has really been a great help here!

UPDATED: GOOGLE FOUND MY URL AND NOTIFIED ME ABOUT THE LOST BLOG. Unfortunately, some of the contributions made here the last 3 years are gone too.

Apples and Oranges?

Ashley's Treatment ... Finding Room to Grow Carrots under the Apple Orchard.
Ashley's Treatment; Growing Carrots under the Apple Orchard I've been reading about Ashley and her parents with great interest. Like Ashley's parents, I've been discussing with several pediatricians about finding a way to help Elisabeth bypass her some of her gender-related biological functions and finding a drug that will slow her growth. The good news is that Ashley's parents have broken through the barrier for their daughter, ad hominems and all. The bad news is why they had to resort to doing this for her.

It scares me when children like her continue to be most of the time invisible to people except when their disability becomes the focus. And most times, what people see is what we don't want them to see -- on object of pity or object to protect. Everyone wants to own her but no one wants to own the reason why her parents resorted to surgery so she could fit in. Instead of people looking at her emerging ability, the focus became what she can't do which is often times used as the basis for planning her future. People did not value her as an individual who has very different needs. She is present but she is was not included.

When we advocate for our kids, it's not based on what they can't do. Do we tell kids they can't play baseball because at 4 they can't hit a ball with a bat? No, we invent something called a T-ball to help them grow an ability. So why can't we do this for children who have global delays?

How To Treat Disability? Call Superman, Who Else?

How To Treat Disability? First, Call Superman!

How to treat disability? First we must treat the society that leaves no space for our children to fit. This is their only disability. This was Pearl Buck's mission here in America. It is through Pearl Buck's advocacy for inclusion and independence where our past meets the future. In terms of linear time, we have made progress since she found quality care for her daughter in the 50s. We have made progress since John Hockenberry's Uncle Charlie was institutionalized but we can't assume that just because we "see" them out- and- about that they are also "included." Inclusion goes beyond seeing our family and friends out in public; inclusion is an immersion of our thoughts, creative process, and actions.

In regard to accessibility and mobility, I have heard over and over and over from people with disabilities they are only an "after thought in planning" even with the current ADA standards in place. I've read the silliest excuses and legal exemptions for leaving things inaccessible. For example, a national historical building was seeking funding for installing push buttons to open doors. The historians and newspapers went bananas because it interfered with the integrity of the building. It became an internal political battle like most things. Innuendos about secret motives, ADA allowances, and love affairs were among some of the reasons why it shouldn't be done until somebody mentioned it was the right thing to do.

Recently, a mother informed me that the "everybody counts" program was dropped from her school system because it wasn't needed anymore. I laughed like always do when I hear irony in action. It was considered outdated by the PTA and some of the exercises made people feel uncomfortable because two of the students had "handicaps.

Inclusion is learning process. It's about including one person at a time which is something we cannot fathom when we have the attention span of a few minutes. Making something the height and depth for a wheelchair and slapping a sticker on it while leaving other areas inaccessible is not inclusion.

I can't help but think about the hilarious slapstick of Charlie Chaplin in "Modern Times" when he get caught in the gears of that giant machine. I can't think of a better way to describe what happened to Pearl Buck's vision of inclusion. Somewhere it got stuck and jammed the system. The challenge is identifying what caused the clog so it doesn't happen again or at least hire a new quality control team so if it does clog, it won't shut down the entire operation.

I propose we stop the machine, rescue Charlie, and start it up again. And the first thing I'd like to do is have a national "Superman" day where EVERYONE spends the entire day either  navigating or assisting a person using a wheelchair for mobility.

Bachelor of Brilliance and Bravery

For Alex



One of my nephews when he was at the age of three amused himself by taking appliances apart and putting it back together. At four, he moved on to cars and tractors. At five, my sister let him go with this father during hunting season and she would later learn to the bars when it was not.

At six, he was labeled learning disabled at school because he was not like the other kids in class. He took extra time to do his work in school when it came to reading, solving math problems, and writing. He needed medication to help him focus. He also had behavior issues according to people where he lived. He was banned from one of three stores in town and he had a reputation for being a "hot head."

Fortunately, one of his teachers recognized a brilliance and bravery in him not present in any other kid in town. While still in elementary school he would go on to learn the things of his father's trade of falling trees, more hunting, and more drinking. While under my sister's roof, he learned how to share responsibilities within his family and how to communicate his feelings rather than keeping them inside. In high school, his class had enough kids to play football so they did. He was pretty good.

Deciding what college to attend was difficult because he would still need help with the reading, writing, and solving problems although he no longer needed the medication. He had considered a trade school in Arizona that offered car mechanics so he could become specialized, but he learned abut homesickeness after volunteering with the fire service in the summer of his junior year. So he settled on a small colleges about 3 hours north where his brother was in his second year studying to be a teacher.

When he graduated from high school, he did it with special peer and teacher recognition and honors. Right afterward, he was hired by the fire service which would take him to California, Utah, Arizona, and Washington so he could save for college or trade school. He met people from all over the United States. My sister tells me now he is struggling again and considering to leave the college. He had met a girl who lives three hours south my sister's town. He told her he had fallen in love and may move to her town. He told her he will find a job working on cars, attend a trade school there, and continue fighting fires when he is called for duty. I couldn't be more happy for him.

Check out this discussion about Autism

Found this discussion about autism online ...
http://www.autism-dd.net/testdump/test397.htm


I cannot vouch for the Institute of Human Potential; I've heard about it and talked about it with Dr. Sonya Oppenheimer at CCDD years ago. She gave us advice which I would be happy to share through e-mail correspondance.

Autism & IEP

http://www.autism-pdd.net/iep.html


.

Advocating & Writing the IEP

Advocating for a Child with Special Needs

Submitted by Elise Fessler

Please note that this is a guide written by a PTA parent who has been through the process and there are many sources for information. "Special needs" challenges that impact a child can be as mild as attention issues or as extreme as full physical and cognitive involvement. Each case is individual but the laws and regulations that define a school district’s responsibilities are the same. This is also a very emotional topic. Usually the earlier the intervention and help for the child the larger the benefit. Stay focused and know that you are the best advocate your child has!

Intervention help for a child birth to age 3 must be obtained through the county MR/DD agency (check the internet or phone book for applicable county). Your school district is responsible from age 3-21. Most school districts have a Pupil Services or Special Needs Director which is who you need to contact for ages 3-5. Usually the principal is the place to start for school age children.

First Step: Identification of the Need for Intervention
Sometimes physicians or teachers will identify the need for special assistance but many times it is the parent(s) that see that their child is struggling in an area. It actually is "easier" to receive services when the child’s challenges are more extreme (i.e. severe hearing or vision impairment, down syndrome, cerebral palsy, severe autism or mental impairment). It is the child that appears "typical" but is struggling that can be harder to obtain services for. Again, don’t give up!

A Multifactored Evaluation (MFE) is performed by the school district to determine eligibility for services. A school can choose to create an "intervention plan" first to determine if sufficient progress is made, eliminating the need for an MFE. A teacher or parent can request the evaluation process. The MFE consists of background information provided by you, the parent. It also includes information from teachers about how your child is progressing in his/her program. Standardized tests may also be administered to assess levels of cognitive functioning, adaptive behavior skills, social/emotional behavioral functioning, communication skills and academic performance. A standard score that is two standard deviations below the mean in one area of functioning or standard deviations of 1.5 in two areas of functioning would qualify a child for preschool disability services. The school age disability categories have specific qualifications as well.

Note that especially for borderline situations this can be a big hurdle. Many times the child doesn’t qualify for services until he/she falls far enough behind which usually happens around fourth grade. Outside private evaluations can be pursued for identification purposes but those can be costly and take a great deal of time. Check with your pediatrician or children’s hospital for suggestions. There is also something called a "504 Plan" that could be implemented with the agreement of the school. Medical documentation of a "disabilility" or "condition" is needed to write a 504 plan. This indicates what is happening with the child that would allow the accommodations to be made to "level the playing field".

The 504 Plan can define accommodations for the child that do not involve services such as therapies. Some examples of accommodations could be extra time on tests, reading of tests by an adult, or smaller assignments. Be aware of the possible self-esteem issues that accompany a child that knows he/she is struggling more than their peers.

Your Child Qualifies, Now What?
With a qualifying MFE now comes the Individualized Education Program (IEP). Get used to acronyms, too. The IEP team is made up of the parent, teachers, and a school district representative (usually the building principal or director of pupil services). Related services personnel can also be members of the IEP team, depending on the child’s needs (e.g., speech/language pathologist (SLP), occupational therapist (OT), physical therapist (PT)).

An IEP is a written plan for a child with a disability that is developed and implemented according to federal and state regulations. This plan includes:
A discussion of future planning (vision statement)
Present levels of academic and functional performance
Identification of your child’s specialized educational needs
Identification of measurable goals and objectives with measurement of success
defined (e.g., the child will perform the task 4 out of 5 times in a week)
Identification of needed services, who will provide them and where will they be
provided (e.g., regular education classroom, special education classroom,
separate facility)

A few things to keep in mind about the IEP and the meeting itself:
o A parent can help set the goals, but the school is responsible for how they are met. We can ask for a set amount of time for therapy, but that is really up to the school.
o Try to keep the measurement as "measurable" as possible (i.e. successes per attempt rather than "improve from baseline"). It is easier to measure progress with hard data. If goals are not met the child may qualify for summer services (if available). Note that summer (extended school year) services are not provided just because goals are not met there also needs to be an issue with skill retention due to interruption in the school year (winter break, spring break, summer break). This would mean that the student doesn’t typically regain those skills within a reasonable amount of time (usually by the end of first quarter). Keep track of that as well.
o Bring somebody with you to the IEP. Even if all of the school personnel are "friendly" it is an overwhelming experience especially at first. It is especially helpful if a friend with IEP experience is available.

Usually an IEP must be reviewed annually. A review can be requested at any time by a team member including the parents. The most recent Individuals with Disabilities Education Act (IDEA) reauthorization does allow for up to a three year IEP WITH parental consent from federal legislation. Currently Ohio regulations do not allow for the three year IEP, but that may change.

If you are not happy with your child’s IEP, the school district must have an opportunity to fully address the issue before legal action can be taken (Due Process). This is not a usual event, but be aware that you have rights.

Also be aware of all of your placement options especially if your child has significant issues. The IDEA law is written stating that the child is to be in a "least restrictive environment". Most of the time this is interpreted as being in an "inclusionary setting" (with typical peers). That may not always be the best placement for your child. Other options such as self contained classrooms or MR/DD schools if either is available could better serve your child. Be sure that you are aware of all of the education possibilities.

Resources
Remember that you are the expert and best advocate for your child. There are a lot of resources available on the topic of special needs. Below is a list of a few. Try to keep a balance between keeping yourself informed and being driven by guilt that you are not doing enough. There are many aspects that parents deal with when they have a child with special needs. There is a strain on time, money and emotions. One of the best things you can do for yourself and your child is to find a support or resource group. Most of the knowledge that I have gained about this education process and just dealing with life in general came from other parents and not "experts". Start with a group that correlates with your child’s diagnosis (i.e. Down syndrome society, autism society, cerebral palsy group, etc.). Most of the resources that would be local to your community should be able to be found from the internet or the local children’s hospital.


o Societies or groups for your child’s specific diagnosis
o County MR/DD office
o County ARC (advocacy and family resource information)
o IDEA government website (http://www.ed.gov/policy/speced/guid/idea/idea2004.html )
o Government IEP guide website (http://www.ed.gov/parents/needs/speced/iepguide/index.html)
o Wright’s Law (e-mail Subscribe: www.wrightslaw.com/subscribe.htm; website http://www.wrightslaw.com/idea/index.htm)
o LD Online website (http://www.ldonline.org/)
o Local Children’s Hospital (usually have a resource library)

Buckeye Bill and Assistive Technologies

Buckeye Bill's Web site
http://coralandopal.blogspot.com/


Locally ...For parents and caregivers who need switch communication aides, Children's Hospital has them available for rent through the authorization of the speech department. Since they are expensive, they ask for a small deposit beforehand. Elisabeth has been training on using one when she was 3 years old when she was at Redwood.

It's been 9 years now and she is finally making the connection that if she pushes the button with a picture of milk, she will get a glass of milk. Very recently we've been offering choices using 2 of these gizmos at one time. We estimate that her success rate is 60%. The hard part is finding something that she doesn't like since this is the only way we can figure if she's progressed from "cause and effect" to the next level.

One night at dinner she was consistent choosing the chili button over water and after a few spoonfuls she switched to water. What's really amazing is that when we start talking about something not paying attention, she continued hitting the button until she got our attention. We decided to take it one step further by removing the pictures and relying on what was recorded on the switch. So when she hit the red button, she heard "chili" and the yellow "water." We were 60% accurate here.

Today, she was hitting the milk button over and over and pushing the cup away when we presented it to her. My guess is that she wanted something else to drink like chocolate milk or water. This is a milestone even though she is not consistent in her choices. It is a major milestone.

Ohio MR/dd Former Students Who Lost School/Resources through MR/dd

If your son or daughter attending an MR/dd therapy school closed down and you were not notified beforehand but told "services" would not go away ...

If your son or daughter attending an Mr/dd therapy school was transferred to the district school because "services" would be offered through the school district ...

If your son or daughter attending an Mr/dd therapy school was removed without written notification even though you were told services would be the same ...

If your son or daughter is not getting the individualized education according to their individual ability ... please send me an e-mail.

Continuum of Alternative Services

Question: Once a determination is made that a disabled student cannot be educated satisfactorily in the regular educational environment, even with the provision of supplementary aids and services, what considerations govern placement?

ANSWER: IDEA does not require that every student with a disability be placed in the regular classroom regardless of individual abilities and needs.This recognition that regular class placement may not be appropriate for every disabled student is reflected in the requirement that school districts make available a range of placement options, known as a continuum of alternative placements, to meet the unique educational needs of students with disabilities. This requirement for the continuum reinforces the importance of the individualized inquiry, not a "one size fits all" approach, in determining what placement is the LRE for each student with a disability. The options on this continuum must include "the alternative placements listed in the definition of special education under § 300.17 (instruction in regular classes, special classes, special schools, home instruction, and instruction in hospitals and institutions). "

34 CFR §300.551 (b) (1).These options must be available to the extent necessary to implement the IEP of each disabled student. The placement team must select the option on the continuum in which it determines that the student's IEP can be implemented. Any alternative placement selected for the student outside of the regular educational environment must maximize opportunities for the student to interact with nondisabled peers, to the extent appropriate to the needs of the student.

It also should be noted that under IDEA, parents must be given written prior notice that meets the requirements of §300.505 a reasonable time before a public agency implements a proposal or refusal to initiate or change the identification, evaluation, or educational placement of the child, or the provision of FAPE to the child. Consistent with this notice requirement, parents of disabled students must be informed that the public agency is required to have a full continuum of placement options, as well as about the placement options that were actually considered and the reasons why those options were rejected. 34 CFR §§300.504-300.505; Notice of Policy Guidance on Deaf Students Education

Posted by Labeled Disabled at 6:29 PM 0 comments

Searching for the X Factor

Most of the time, I admit, I operate on an emotional level when I should be using logic. Through clear deductive reasoning, for example, I should have figured out those sudden outbursts made by Elisabeth were years of frustration building up maybe from not using the potty for the first 13 years of her life.


Yes, I am exaggerating a bit about the potty training because we did try in earnest every year unsuccessfully. The point is that it's never easy figuring out their pace of personal development when all we have to work with is what other children are expected to do. For some it may take an entire lifetime to reach a milestone and for others it takes only a year.

For example, when most children are completely potty trained by 4 or 5 years old, Elisabeth was at  a different level of development. According to the pediatricians and specialists, Elisabeth continued to function as a 5 or 6 month old infant in all areas of communication, fine motor, gross motor, and neurological development. So naturally as parents, we responded emotionally to her needs the way most parents would respond to a 5 or 6 month old infant.


Like most parents, we used this emotional connection to form the basis for her own personal development.  It made everyone around her feel good meeting her needs because it resulted in favorable responses. We saw a personality emerge. We saw progress in other areas of development. Small and incremental at times. But we found a pathway to connect to her. We found her "happy" state."  When she fluctuated between responsive and unresponsive, we were relieved to discover the things that made her really happy.

The flip side is that keeping her in that perpetual "happy state" does not prepare her for the world outside of our home because the world simply does not function at this ongoing "happy state" level. An architect or engineer, for example, is not functioning at our "happy state" level while designing spaces and access  exceeding ADA expectations. Politicians  are not functioning in Elisabeth's "happy state" while debating, defining, and funding her quality of life and quality of care.

Are you following me here?


The point I'm trying to make is that all children are unique in their emerging abilities and different areas of development. And for most parents, it's a game of trial and error. We're all searching for that X factor. You know, that X factor. The factor that reveals itself after following the prescribed pathways created by what we see other children doing with similar abilities.

For parents and caregivers with children who are born with disability labels or who develop a label after birth finding that particular child matching up to their own child in ability and development is impossible.  The milestones, the charts, and the sequence in development is not there for our children.  All we really have have to go on is our own X factor. The factor we discovered in hindsight creating that emotional bond defining for us a fleeting but tangible smile to mean a "yes" or a flinch in eyebrows to mean a "no."

"We can't go out tonight there because..."
"We can't vacation there because ..."
"We can't ... because..."

I promised my daughter I would never use her global delays as a label or a reason not to do something. She was my daughter first. It never dawned on me that I would have to use her label of "disability" for getting something done. When her rights to an individualized education were being manipulated by a whole host of people who didn't know her or fully understand her needs or the needs of others, I was forced to point out the things that made her different from other children. I had to parade her disabilities to get people to understand why we needed to keep her county operated therapy school open.

Today, I can say that at least one of the local politicians responsible for closing the school by interfering and manipulating her rights to a free public education was brought to justice somewhat. This man through his cronies who undermined the media and a tax levy review committee was not re-elected.

He was voted out because he never responded to calls and e-mails about the bogus Maximus statistics or infringement of civil rights. He never addressed the concerns about his connections to the other groups who were also in on the closings. He ignored us and miscalculated the number of people whose live will be permanently altered because of his apathy, greed, and vanity. People that were affected by the outcome of other "rigged" tax levies. He was voted out because he made parents like me beg for something to which she was entitled and parade our child's disability like it was something bad while he laughed behind my back and the backs of other people "like her."

It is because of her disability "label" he will no longer have a job come next year. This was not fair to have this weight on her shoulders. She is only 12 years old. When we allow politicians to cross over into our personal life or the lives of others, how can we think there won't be long term consequences for everyone

The Cookie Monster ...

I lifted this note from "advocate" on Cincinnati Beacon's blog where I on occasion make guest appearances as the wordwis guys and host of other psuedonyms ...

submitted by advocate:you are right about the mr/dd - maximus was fired by the county while operating the out of state child support cases because they did such a lousy job. what’s the old saying, those who can do, those who can’t teach? ( not meant against teachers just overseers) maximus couldn’t make any of their own practices work within the financial constraints so they switched their foucs to telling everyone else how to do it. and they are failures at both—there must be some big campaign cotributions going onthere. heimlich ( yes heimlich - not maximus) heilich and finney the fink told the mr/dd to go after elderly parents of clients receiving services and collect child support fromthem (under a ubscure law, parents of disabled children are required to support them until their death) heimlich not only dumped the services back onto the over burdened schools - but on the backs of parents of disabled clients who, themselves, are o fixed icomes.this isn’t portune’s baby in ay way shape or form—this was heimlich and finey and dewine doing.just so you know—under the drake deal—the alliance ( defunk) can take allthe levy money we voted for and use that same money to “buy” drake fromthe public control ending the services for those experiencing catastrophic health care incidents.how does finey the fink refer to these groups? social service cabals??? that’s a pretty clear indication that finey the fink andheimlich are only for survival of the richest and bear no mroal responsiblity for their fellow man. hell - they won’t even let the public decide for themselves if they wantto help these families.

Learning Disabled and Learning Disorders, Learning Diseases

I found three interesting research pieces online about "labeling children." Keep in mind that the articles are specifical to "learning disorder" labels and issues of the learning environment impeding progress.

http://www.naturalchild.com/jan_hunt/learning.html
http://www.ldonline.org/mminds/levine_paper.html
http://www.pbs.org/wgbh/misunderstoodminds/intro.html

More on Dr. Elliott Sherr and his collaborators at UCSF...

More on Elliot Sherr, leading the research on ACC at UCSF:


"Dr. Elliott Sherr and his collaborators at UCSF are studying the genetic causes of disorders of cognition and epilepsy, as well as the brain malformations associated with these disorders. Our focus is on polymicrogyria (PMG), Dandy-Walker malformation (DWM), and disorders of brain development that affect the corpus callosum (ACC/DCC). We are studying the clinical features of these disorders to better understand the problems faced by individuals with these disorders. The goal of our research is to use a better understanding of the underlying genetic causes as a foundation to develop better treatments for these groups of patients."

When LRE isn't clear ...

TO HELP YOU DEFINE WHAT IS BEST FOR YOUR CHILD IF THEY HAVE SERIOUS MEDICAL PROBLEMS, SERIOUS DELAYED DEVELOPMENTAL ISSUES, AND CANNOT BE MAINSTREAMED INTO YOUR DISTRICT SCHOOL.

READ ON:http://www.kidstogether.org/right-ed.htm

Schools with Good Report Cards ...

Forest Hills - autism program through 4th grade - bad transisition into upper levels - retrograde reaction, St. James (White Oak) St. Williams (autism), Wyoming (multiple disabilities, cp), Conductive Learning Center (this would be great for all our kids who have severe global delays), MR/dd schools Margaret Rost (west side) and Bobby Fairfax (east side). I am hearing good reports about Kings Mills school district who have children with mobility and medical challenges.

When Lifetimes Pass Before Our Eyes ...

Dedicated to Teddy and Joel ..

I received a call from a mom who was worried sick upon hearing her child's bus ride will be one hour and a half to school. I try consoling her by saying Elisabeth's ride had been this way for six years and she appears to be adjusting to it. Although I have no way to detect her feeling about it or what actually goes on while in the bus drivers care one way or the other, I can tell she is in good hands by the smile and giggle she gives to him in the morning sharing a "high five " moment.

I explain to Worried Mom, I get the full report if she was happy, sad, sleepy, unusually quiet, or pale. When she gets off the bus into our home, I do the usual inspection of her arms, legs, and body in general while changing her diaper just to be safe. The only thing I notice is her fingers are shrivelled from her stroking her tongue and sucking on her tongue. She does this when she is left alone for long periods of time out of boredom but also out of pleasure after eating or before she goes to sleep. For this fixation I am selfishly grateful she cannot explore other parts of her body for now.

From my experience, these people, the bus people, are compassionate, engaging, and respectful to her needs. They are the first ones to recognize when our children are sick or in trouble. They were the first people who informed me that my daughter's other school was scheduled to close followed by a "I'm really sorry this is happening." The mother paused. There was silence. She begins iin one breath:

"No, you don't understand, he is too figidy after a few minutes and sometimes he can be perceived as having a tantrum and out of control. And to be left on the bus for this long? He does strange things that might not be understood by someone who is not trained to work with kids like him. He might take his clothes off or become fixated by his seatbelt and remove if he is unsupervised. He's fast. She continues with the question we all ask from time to time about services in general, is this humane knowing how tantrums and freakouts are initiated and then putting kids in an environment that causes it? How safe is it for the bus if the bus driver who has to stop the bus to investigate a situation he or she is not fully trained to understand or respond?"

I was silent. Very silent. I suggested asking the bus company to have somebody sit with him. "Can you call your pediatrician to write a note with an explanation?" This is practical and having a doctor's note will provide justification and she will pay extra for someone to sit next to her son. Her little boy, she explains presents as "autistic" but still has no prognosis or diagnosis to explain his neurological impairment. She jokes "I'll call the bus company, I'm sure they have a neurologist or expert on hand that can advise me."

Many of our children are helpless in this situation. Their typical developing peers can communicate if something is wrong. Our's cannot. It takes a long time to get used to being on bus for an hour and half. Shoes, baseball caps and clothes that get tossed out are just the "tip of the iceberg." Sometime, they become aggressive biting themselves or others. Maybe even putting the other kids at risk everytime the bus driver has to stop. The bus driver and monitor called me one time about one of the kids swinging at Elisabeth who showed no signs of distress.

We are frozen in a time zone trying to figure how we can provide and protect our children who have developmental patterns frozen in a different time zone of infancy. Their cognition impairment and neurological disorders cause their behavior to change as quickly as a second hand on the clock prompted by who knows what. When we are not there, it is natural for us to we worry. We feel guilty because we know things can happen but we don't know what or when or where or why or how. There are certain triggers we as parents, therapists, and special education teachers can recognize and respond. There are some we cannot and a lot can happen in an hour and half.

A whole lifetime can pass in one second.

FAPE PAGE

Here is a gold mine of information about FAPE

This is a resource that is so extensive, it should be handed out to every parent in America who has a child with special needs. Thank you, Sandy.http://fapepage.blogspot.com/