A Letter From Parents of Special Needs Children

Dear School Personnel, Community Members, Teachers, Parents and Neighbors

Posted by Marianne, Life Unexpected: Raising a Special Needs Child BLOG

To Whom it May Concern,

I am the parent of a special needs child. I was overwhelmed, confused, heart broken and struggling to unravel the complexities before me.

Please do not pass judgement of me without knowing why I did not attend the school PTA breakfasts or community picnics. Please take a few minutes to understand why I did not take you up on your offer to have lunch or grab a cup of coffee. Although we see each other in the supermarket or at school functions, I don’t think you really ever knew me, actually, I can guarantee that you did not know me because just as my child was different, so was I.

I was in survival mode to keep my family in tact and to give my child the best quality of life possible.
I was presented with parental decisions that have torn me apart and kept me up more nights than I can possibly remember.

I had spent most days of the week at therapy and doctors appointments and most nights up researching treatments and medication options.

I was forced into isolation at times due to the stigma and misconceptions that are epidemic in our society.

I became proficient at prioritizing my life and learning to let the little things go, to look at others with compassion instead of tabloid material and to turn a blind eye to the stares or ignorant comments.

I did the best I could.

I survived.

I am one of the lucky ones, my child has blossomed and has exceeded all our expectations.

I have now become strong, I have become confident and I have become a fierce advocate for parents of special needs children. The growth did not come without much pain and many tears but it came.

So I ask you, please




The next time you see a parent struggling with a raging child, a child terrified to go into school, a child making odd movements or sounds, a child that seems to be in a world of their own…

.Be kind. Give a smile of recognition for what that parent is going through. Ask if there is anything you can do to help, give them a pat on the hand or offer for them to go ahead of you on line.

The next time you have a birthday party for your child remember that their child has a hard time with a lot of sensory issues and social situations. Please send their child that invitation and know that more times than not they will not be able to attend but appreciate being included. Understand that in order for their child to go to the party they may need to stay for a little while and please make them feel welcome. When they let you know that their child cannot make the party consider inviting that child for a one on one playdate or an outing at the park.

The next time you are grading homework papers please understand that their child struggles, some with learning disabilities others with the exhaustion of their disorders or the obsession with perfectionism. The Perfectionism is not necessarily to have the answers right but to have it “feel” right for them. They have spent hours doing what most can do in ten minutes. A paper returned with red circles and comments only hurts a child’s self esteem and causes school anxiety. Please understand that when they see the school come up on their caller ID their hearts sink, remember to tell them about all the gains their children are making as well as their deficits. Take a minute before that call and know that they appreciate all you do and want a collaborative relationship in their child’s education.
The next time you are in the teachers lounge, please do not discuss their child. Please do not make negative comments about their parenting or their child’s behavior, it gets back to them and it gets back to other parents in their community.

The next time you pass the cafeteria and see their child sitting alone please consider inviting that child to eat lunch in your classroom and be your helper that period. Consider working with a guidance counselor to set up a lunch buddy group in a different area.

The next time they are at the CSE meeting planning their chid’s IEP know that they are educated, informed and confident knowing special education law. Know that they have found the courage to stand up to conformity and will explore every option to give their child the differentiated educated that will show their gifts and not just their disabilities. Understand that educating a child with special needs is one of the most difficult tasks a parent can face, know that the last thing they want is an adversarial relationship. Please show them the same respect they show you.

The next time you are creating an educational plan please take into consideration that their child may have specific interests or obsessions. Foster those interests, instead of taking away that art class for a resource class consider adding an art class instead. Think outside the box, these parents do.

The next time you see that child in a wheelchair unable to speak or control their movements, don’t stare, don’t look away, say hello. Do not assume that because this child is nonverbal that they are not intelligent or do not understand the awkwardness that you feel. Take a moment out of your day to show kindness, support a parent enduring incredible pain and just give them a smile.

The next time your child comes home telling you how Johnny or Susie is so weird, take the time to teach about differences. Take the time to talk about compassion, acceptance and special needs. Please remember that your child learns from you. Be a role model, mirror respect and discourage gossip.
The next time you hear a comment about how out of style these kids are, educate about tactile sensitivities and the fact that these kids cannot tolerate many textures and fits. Imagine what it would feel like to have sandpaper in your stilettos or tight elastic holding on your tie.

The next time you see an out of control child do not assume it is bad parenting. Understand that many of these disorders have an organic basis, are biological and are real illnesses. When you hear the words mental illness, take out the “mental” and remember ”illness”.

Know that it is this generation that can stomp the stigma and create a world of acceptance.
The next time other parents are talking about “Those Kids” be our heroes, stand up for us.
The next time you see a special needs child know they are not just special in their needs but in their brilliance as well.

Take the time to meet our children. Take the time to know us.

AFTER POST: Thank you for the tremendous response to this writing and requests to post or share on your blogs, websites or educator sites. Feel free to copy in its exact form and use author credits to comply with copyright.

Mistakes Independent Experts Make

From Wrightslaw Website:
http://www.wrightslaw.com/info/mistakes.ie.htm

Mistakes Independent Experts Make
by Pete Wright, Esq.

It is good to have an expert in your corner during the IEP process. Experts provide valuable assistance. But sometimes experts make mistakes that can turn a positive situation into a negative.

A psychologist wrote that she had advocated for a family for over a year. During that year she developed a positive working relationship and worked well with school staff. Now, she is at odds with the school. The principal has limited her ability to visit the school to observe students.

The principal informed the mother that in the future I would need to provide TWO WEEKS notice of my plans to conduct any classroom observations.

The principal took this action after the psychologist filed two complaints against the school with the state Department of Education.

Why? The psychologist wonders. She doesn't seem to understand the impact her actions had on school personnel. School staff felt betrayed by her when she filed two complaints.

Betrayal and Retaliation

The response from the principal is normal human behavior. It should not come as a surprise.

The psychologist explained, "Historically . . . the teachers and I have regularly worked together to address problems as they arise." However, she filed a complaint on behalf of a parent last year. She filed another complaint this year.

How did the principal and other school personnel view these complaints? In a word, betrayal.

The cooperative relationship she had with the school in the past survived one complaint. When the psychologist filed a second complaint, the positive relationship ended.

When people feel betrayed, they usually look for a way to retaliate.

Who Should File Complaints - Parent or Expert?

It is doubtful this problem would have happened if the parent, rather than the psychologist, filed the complaint.

In most situations, school personnel do not typically feel betrayed when a parent files a complaint. They feel anger.

When the school works cooperatively with an independent expert, or has an extremely cooperative relationship with a parent, a complaint coming in out of the blue catches them by surprise.

When people feel betrayed they seek vengeance and think retaliatory thoughts.

Pete Wright describes how he feels when someone wrongs him and he feels betrayed.

Do I think through how to retaliate an eye for an eye? Never.

Do I think through how to turn the other cheek? Nope.

I try to settle the score with one eye for an eye. Then a second eye to serve as

• an additional punishment and
• a deterrent for future behavior.

Special Education Disputes

The principal's initial reaction could have been closing the door absolutely. He chose to permit observations, but with advance notice.

Special education disputes, and special education dispute resolution procedures are akin to messy divorce / custody domestic relations struggles. Both sides experience feelings of betrayal and anger. They seek vengeance.

Typically, aggrieved wronged spouses, just as special ed parents, use the word "justice" in lieu of vengeance. But the emotional feelings and motivators are the same.

Parent as Complainant

Parents should take complaints, not someone on their behalf.

Parents need to be taught and must learn the skills for effective advocacy. Their struggles will not just end when the youngster ages out of special education. The struggles will repeat themselves with other individuals, other agencies, and other issues.



Mistakes People Make - School Districts

From Wrightslaw website:

http://fetaweb.com/02/mistakes.school.crabtree.htm

Mistakes People Make - School Districts by Robert K. Crabtree, Esq.

Anything a school system does that undermines parents' trust creates a climate that is costly in dollars, time, peace of mind, and the quality and success of services given to the child.
Here are the most significant school system mistakes, according to persons at every level of the system:

1. Refusing to let parents or parents' experts see programs, either within or outside of the school system. When school systems tightly restrict the parents' access to their own programs, the parents wonder what they are hiding and assume the worst; when they refuse to clear the way for parents to see an outside program, the parents will assume that the grass is greener over there;

2. Failing or refusing to communicate and actively coordinate with outside experts working with the child, such as the child's therapist or a tutor;

3. Ignoring reports from independent evaluators; failing to speak to those evaluators to clarify ambiguous information or recommendations; failing to add the evaluator's recommendations to the IEP when reasonable;

4. Failing to respond to parents in writing or at a meeting when a problem arises;

5. Taking a patronizing and/or antagonistic and/or insulting attitude toward parents; personalizing issues between school and parents; attempting to blame parents for their children's educational failures rather than looking for solutions (school system professionals need to treat parents with respect even if those parents are insulting and belligerent themselves);

6. Sweating the small stuff (e.g., spending twenty minutes at a team meeting arguing about whether the meeting can be tape-recorded);

7. Failing to observe procedural timelines and notice requirements (e.g., scheduling timely meetings, getting evaluations to the parents before the team meeting, notifying the parents who will attend the meeting, providing clear written explanations of parent rights);

8. Writing careless and sloppy IEPs. Parents, evaluators, and hearing officers all look first at the extent to which the written IEP reflects a thorough and logically coherent view of the child, the goals and objectives for that child's program, and a clear and understandable description of what will be provided, how, by whom, and when; and how the child's program will be evaluated;

9. Failing to implement an IEP and, worse, trying to cover up that failure;

10. Failing to modify an IEP that is not working and waiting, instead, for the program - and the child - to collapse;

11. Failing to provide additional or different services as a way to avoid having to make more restrictive (and expensive) outside placements;

12. Failing to call in expert consultants from outside the school system with good reputations among both school and parent communities who can help develop or monitor a program for a child with unusual needs;

13. Losing contact with families who have placed their child unilaterally. Some school systems forget or ignore their continuing responsibility to evaluate, review, and propose IEPs for children when they are attending outside placements at their parents' expense;

14. Botching the required procedures around suspension or expulsion of students with identified or suspected special education needs (e.g., failing to convene the team, failing to make a manifestation determination, failing to re-examine the IEP to see if services are appropriate and have actually been provided, failure to provide FAPE to suspended or expelled students with special education needs;

15. Failing to ensure that non-special education administrators - particularly building principals - are fully informed about and are following the required special education policies and procedures.

Hope for schools!

School superintendent gives up $800k in pay

By TRACIE CONE
Associated Press

Read more: http://www.sacbee.com/2011/08/28/3867516/school-superintendent-gives-up.html#ixzz1We9wdBfo

Published: Sunday, Aug. 28, 2011 - 8:08 am

Last Modified: Sunday, Aug. 28, 2011 - 9:18 am

FRESNO, Calif. -- Some people give back to their community. Then there's Fresno County School Superintendent Larry Powell, who's really giving back. As in $800,000 - what would have been his compensation for the next three years.
Until his term expires in 2015, Powell will run 325 schools and 35 school districts with 195,000 students, all for less than a starting California teacher earns.
"How much do we need to keep accumulating?" asks Powell, 63. "There's no reason for me to keep stockpiling money."
Powell's generosity is more than just a gesture in a region with some of the nation's highest rates of unemployment. As he prepares for retirement, he wants to ensure that his pet projects survive California budget cuts. And the man who started his career as a high school civics teacher, who has made anti-bullying his mission, hopes his act of generosity will help restore faith in the government he once taught students to respect.
"A part of me has chaffed at what they did in Bell," Powell said, recalling the corrupt Southern California city officials who secretly boosted their salaries by hundreds of thousands of dollars. "It's hard to believe that someone in the public trust would do that to the public. My wife and I asked ourselves 'What can we do that might restore confidence in government?'"
Powell's answer? Ask his board to allow him to return $288,241 in salary and benefits for the next three and a half years of his term. He technically retired, then agreed to be hired back to work for $31,000 a year - $10,000 less than a first-year teacher - and with no benefits.
"I thought it was so very generous on his part," said school board member Sally Tannenbaum. "We get to keep him, but at a much lower rate."
His move was so low-key, his manner so unassuming, that it took four days after the school board meeting for word of his act to get out to the community. There were no press releases or self-congratulatory pats on the back.
"Things like this are what America is all about," said friend Alan Autry, Fresno's former celebrity mayor who played Capt. Bubba Skinner on the TV series "In the Heat of The Night."
"America is as much about overcoming obstacles in difficult times as it is opulence," Autry said. "This reminds me of the great sacrifices made throughout our history, especially the Great Depression."
No one has been more surprised about the positive reaction than Powell, a lifelong educator who didn't realize that what he did was newsworthy. He chuckles at his desk when yet another e-mail arrives from a colleague blown away by his generosity. Two days after word got out he had received 200 messages on his Facebook page.
"When you make good choices, good things happen to you," said Powell, who tends to talk in the kind of uplifting phrases that also make him a sought-after motivational speaker.
He even sees as an asset his childhood contraction of polio, which left him with a limp and a brace, and now a lingering post-polio syndrome.
"It's the most spectacular thing that has happened to me in all my life," he said. "People stepped up to help me be successful."
Powell might credit others, but others say Powell's drive always has come from within. Despite the right leg brace and experimental operations to stop the growth of his healthy leg, he became a champion high school wrestler in Fresno and set a record for one of the most dreaded of all gym class drills - the 20-foot rope climb, which he completed in 1.8 seconds. Today he carries a six handicap in golf.
After moving into school administration he became deputy superintendent, and was appointed to his current job before running for the office in 2006.
The ordained Baptist minister, who serves on the board of a national anti-bullying group that sprang from the Columbine shootings, is so popular he even counts among his friends his contract bargaining nemesis, the former head of the employees' union.
"For a leader to step up to help the budget is phenomenal," said Mike Lepore. "It gives you hope. It gives you the feeling that everything is being done to try to make education work. It's Larry. It really is."
Powell will still earn a six-figure retirement, especially hefty by the standards of California's farming heartland. But because his salary comes out of the district's discretionary budget, for the next three years he'll be able to steer the money he is giving up where he wants: to programs for kindergarten and preschool, the arts and a pet project that steers B and C students into college by teaching them how to take notes and develop strategy skills.
"Our goal has never been to have things," Powell said of himself and his wife, Dot. "We want to give back."

Kasting Connections Perspective:

Ahhhh....music to my ears!  I have long touted that any one in educational administration should have at least 10-15 years of teaching experience before becoming an administrator.  Usually when an administrator comes from classroom experience, s/he can remember the most important thin in education:  What's best for the students?  His quote speaks volumes:  "How much do we need to keep accumulating?" asks Powell, 63. "There's no reason for me to keep stockpiling money." 

Now the programs that were to be cut under the budget constraints can be funded: programs for kindergarten and preschool, the arts and a pet project that steers B and C students into college by teaching them how to take notes and develop strategy skills.

There IS hope for the future!  Maybe Superintendent Larry Powell will start a standard that money belongs in the classroom, not in the boardroom!

Loans, Scholarships, and Financial Aid for Students

Wrights Law, one of my favorite sites for up to date information on Special Education Law has posted information on loans, scholarships, and financial aid for students, particularly students receiving special education.  Click on the link below, there is an abundance of information/links contained in the article!

http://www.wrightslaw.com/info/fin.aid.index.htm

Let's make the connection!

This my first blog ever...I'm not sure I have even read a blog before, but I've learned I have a lot to say...and sometimes people listen...in fact, people have encouraged me to begin a blog and share my knowledge.  After reading this, you may or may not be one of those people, but thanks for taking the chance...

I've been on a journey of learning for the last 25 years of life...a journey rich with experience and learning curves which has led me to achieve myriad of accomplishments.  I spent 18 years as a special education teacher in the public school system in three different states, Illinois, Missouri, and California.  I began my career teaching in a residential facility for adjudicated youth, males removed from their homes by the court system due to poor choices.  I set up the first self-contained classroom in that facility and was very proud of the students' progress.  In those 18 years of public school teaching, I worked with severely behavior disordered youth, schizophrenics, oppositional defiant, conduct disordered, learning disabled, dyslexics, aspergers...I think you get the idea, the population was varied and usually the most extreme of children.  I was never afraid to work with what most teachers considered the more difficult students; in fact, I enjoyed the challenge of it all.  I loved to help those students navigate their world and to understand what was special about them.  It was rare that I wasn't able to make a personal connection with the students; it was that connection that set up our ability to learn from each other.

I spent my last four years of public school teaching in a Northern California high school as a resource teacher of mostly seniors.  It was this experience that motivated me to seek other answers to public education (actually the answer fell into my lap, but more on that later).  Most of the seniors in high school had been in special education for eight or more years, yet their skills were almost the same as when they entered special education.  If they entered reading at a 4th grade level, that's usually where they ended up.  If they entered special education with written expression difficulties, they still had the same issues at the end of high school.  Special Education studentsare leaving the public schools with the sense that they can't achieve anything like the "normal" kids; they leave thinking they are stupid and losers.  It was very difficult, sometimes almost impossible, to change that belief system because students had been believing it for so long.

My philosophy has always been, "All students can learn, but all students do not learn in the same way."  Schools around the nation spout that they believe all students can learn, but it is rare that a school  can demonstrate the committment to make that happen.  Resources are being cut and teachers aren't getting the support and training that is needed for the everchanging needs of students.  I believe in teachers, and I believe the system needs some revamping...so I left the public school system to begin a journey to try to create the change I want to see in education.

I was lucky enough to meet people that opened the world of sensory intergration to me.  Since 2004, I have been able to put my efforts into understanding the neuro-biological foundations of sensory integration and how it impacts students' learning.  I'm so excited for the opportunity to share that knowledge! 

During the past seven years, I  had been practicing in private learning clinics; now I'm providing services from a home based business.  I've been able to consult on individual cases and do workshops for teachers, but that's just the beginning.  Stick around, read some more, start a conversation, make a connection that could change a child's life!

You can also check out my website: http://www.kastingconnections.com/