Challenges Put in Perspective

By Dan Shaughnessy, Globe Columnist | October 26, 2007

Something tells me Rockies manager Clint Hurdle is a guy who can deal with a 13-1 loss in the first game of the World Series. He knows it's not the end of the world. He knows there are other things more important. He has all the perspective any baseball man will ever need.

He has his 5-year-old daughter, Madison.

Madison Hurdle has Prader-Willi Syndrome, a rare genetic disorder. It makes Madison different from other kids. Symptoms include low muscle tone, development delays, morbid obesity, cognitive disabilities, and behavioral problems. She also suffers epileptic seizures. During the playoffs, when the Rockies were in Arizona, Madison developed pneumonia and went to Children's Hospital in Denver. Hurdle's wife, Karla, kept it a secret from her husband for a few days. Madison is back home now.

Before the World Series, Hurdle was asked, "What has your daughter Madison taught you?"

"This doesn't need to be a Dr. Phil show," the manager started, "but as I said before, her purpose in life, and I think the purpose of many special-needs children in people's lives, can be a dynamic, that if you don't have one, you'll have no understanding. It's a very special fraternity or sorority to enter into. You don't raise your hand and get to the front of the list. But once it happens, you're in."
It's a big club. Every family is handed challenges, some more than others. Talk to Doug and Laurie Flutie about their autistic son, Dougie. Parents of a girl like Madison learn to lean on other parents who have kids with similar disorders. They learn from their children and they teach the rest of us. And they tend not to get hung up on things like a lopsided loss in a World Series game.

Think Clint Hurdle is going to lose sleep because of hate mail, lineup second-guessers on talk radio, or a humiliating loss in a World Series game? Think again. He knows what really matters.

It was, therefore, no surprise that Hurdle and his players said all the right things after Wednesday's beating and again before Game 2 last night at Fenway Park.
"We're playing in the World Series," said veteran Todd Helton. "We're not going to hang our heads no matter what happens in this thing."

"We know exactly where we are," said the manager. "We know exactly what happened last night. We lived it, we wore it, and we've showered it off. Short-term memory is very, very important in this game. One of the strengths of our ball club, as I mentioned, is the ability to honestly self-evaluate and move on. We didn't do that many things well last night."

He knows this is only baseball. He knows that on a daily basis, his wife is the one with the stressful, high-pressure job. The caretaker of a child with Madison's symptoms doesn't get a lot of free time to read the newspaper or go out for lunch with the other moms. It's nonstop vigilance and exhaustion. But the rewards can be great.

"It's like many things in life," said Hurdle. "You look for good, you're going to find good; you look for bad, you're going to find bad. There's a period where you need to get through the grieving, the challenges, that big picture of the unknown, and then, you know, it's kind of like, 'How do you eat an elephant?' One bite at a time. With Maddie, it's one day at a time."

One day at a time. With no promise or guarantee that it will ever get better. Just great joy in the smallest of triumphs.

"At the end of the day, Karla and I look at each other and say, 'Did Maddie have a good day?' " said Hurdle. "And when Maddie has a good day, everybody has a good day."

So maybe Maddie had a good day Wednesday. And maybe when Clint Hurdle talked to his wife after the 13-1 beating at Fenway, he heard about smiles from his little girl. And maybe that was quite a bit more important than how badly his team looked in the first game of the World Series.

Hard not to root for a guy like that.

Dan Shaughnessy is a Globe columnist. He can be reached at dshaughnessy@globe.com.

I Do Know Now

I Do Know Now
by Kim Morrell,
President, MFH2

I knew when I was carrying you that you were special.
I knew when you were born that you would have afflictions.
I knew when everyone made a fuss over you, they'd see
your differences.
I knew when I got condolences from strangers that it was
the beginning.
I knew when you went to school, you would have to learn
differently.
I knew when you were invited to parties and events that I
would have to go with you.
I knew that I had to raise you on my own to do the best job
possible.
I knew I would get flack about being a single mother by
choice.
I knew what I was doing.
I knew our family was different
I knew that I was the only person that could raise you.
I did not know that you would be my life's greatest
teacher.
I did not know that our ordinary would be everyone else's
extraordinay.
I did not know how much fun I would have raising you.
I do know now.

Directed to Dependence

Be careful of what you ask for. I reached a point in my life where I felt totally lost and was searching for direction. I feared that I would miss God's instructions so I asked for great, big, neon signs. What I did not expect was to have these signs fall and hit me squarely on the head! I knew that some changes needed to be made in my life but I did not fully grasp the level of change I would be facing.

My life had not turned out the way I planned in any way. My college education remained unused as career paths disappeared during the years I spent at home caring for two children with special needs. I believed, however; that I had everything under control. I tackled each new diagnosis, plan and task with sheer will and determination. This worked for years but as I handled more and more things on my own, my dependence on God became ceased to exist.

My way of life came to an abrupt stop on a Tuesday evening in September of 2006. My youngest son, Riley, was seven years old and during this short lifetime, he had already faced the challenges of Autism, Type I Diabetes, and a Seizure Disorder. Riley had recently become an escape artist and this prompted me to install locks that required a key to enter and exit outdoors. My relief over my son's safety lasted only one night.

Appointments, therapy, and school were finished for the day and my oldest son, Zachary,headed outside to care for our two dogs. It only took a minute or two for me to realize that I did not hear Riley in the house. A yell from me brought Zachary and my husband, Brady, into the search for Riley. Brady headed down to the highway while I searched through the house, but Riley was nowhere in sight. Zachary mentioned a neighbor's pool and Riley's extreme love of the water. You can not see the pool from our house and I was at a loss as to how Riley would even know the pool was there. However, Brady and I headed next door.

As we rounded a curve in the driveway, I spotted a small pile of clothes on the ground. Brady sped past me as my heart and mind grappled with the unthinkable. The next sound I heard was Brady yelling for someone to call 911! I then turned and passed the message on to my mother who was standing in the doorway of my house. With a heavy heart, I made my way to my son's side.

I will never forget the sight of my baby on the cement beside the pool. He was blue. Aneducation, that I thought had been wasted, gave me the skills to perform CPR and God gave me the strength. I cried, prayed, and executed chest compressions as thoughts concerning Riley's survival raced through my mind. Pool water continued to pour out of my son's lungs and hopelessness descended upon my spirit. I cried out for God's help and Riley's heart began to beat faintly. He was trying to breathe on his own when rescue teams arrived minutes later to provide transportation to the hospital. I thanked God for each flashing light that appeared in my yard that day.

Riley was admitted into the pediatric intensive care ward and I entered wait and see territory. The next 24 hours would tell if my child would require a ventilator to keep him alive. X-rays and tests progressively worsened and defeat pounded on the hospital room door. I sat beside Riley's bed and thought of all the love and care I had poured into my baby boy.

God chose this moment to remind me of a few things. Memories of Riley's dedication to Godflooded my mind. I also recalled promises that God had made to me indicating that each of my sons would be an awesome display of glory. The only thing that was lacking was my willingness to totally trust and depend on my Heavenly Father.

I prayed and earnestly expressed my proper awareness of God's love, power, and provisions. As this prayer passed through my lips, a scene unfolded in my mind:

I saw a great, roaring force eliminating darkness, pain and death. .I thought it must be the angels I had asked God for, but then, I realized this huge mass of power was not made up of angels. I heard God say, "I'll take care of this myself!" After the wake passed, it was very peaceful and quiet. Jesus walked behind God's power with Riley in his arms. Jesus said to me, "Don't worry about his strength, he can have mine."

Peace became my close companion. I knew my son would be fine. Doctors and nurses watched in awe as Riley's condition turned around. Plans for a ventilator became a distant memory. Within the first "wait and see" 24 hours, my son: got out of bed and walked to the bathroom; made requests for pizza and spaghetti; and told his mom that he loves her a whole bunch. Riley was back in school on Monday.

Several smaller miracles took place in the midst of Riley's awesome recovery. Each individual, who had a part to play, was in exactly the right place in order to supply the help my son needed:

*Brady was at home and awake in order to get Riley out of the pool. My husband worked third shift and was usually sleeping in the afternoon.

*Zachary knew just where to find Riley. This saved valuable minutes!

*Mom was standing in the doorway so I did not have to travel all the way back to my house in order to call 911. CPR could be started right away!*

The landlord of the house in front of us was present to flag the rescue teams down.

*The first rescue team that arrived on the scene had been only two blocks away. It took them 1 minute and 45 seconds to travel the distance after receiving the call from dispatch.

*Not one of the Pediatric Intensive Care nursing team, who took care of Riley during the crucial first 24 hours, was scheduled to be present. Everyone on the schedule had called in sick.

*Riley was the talk of the hospital. Complete strangers stopped us to let us know that another church would be added to our prayer team as soon as a phone was within reach.

I know for certain that God vigilantly maintains his close, loving, presence with each one of us. My total and joyful dependence on God has been restored. Hearts and attitudes have been forever changed. But, most importantly, God's glory has been displayed, once again, for all of heaven and earth to witness.

Advocacy Tips - Meeting with School or District Officials

The parent of a student with a disability will be asked to attend lots of different types of meetings. And, meeting with the school's principal or the IEP team can be stressful for any parent. If the student is having trouble in school or the parent disagrees with the services or placement that the school district is proposing, the level of stress increases.

A parent should receive reasonable notice for any meeting and when possible the meeting should be held at a time that is convenient for the parent. This fact sheet offers parents advocacy tips to help prepare for the meeting, tips to use during the meeting, and tips for after the meeting has ended.

Advocacy Tips for preparing for the meeting:

#1---Know the purpose of the meeting. If the student's IEP team or Section 504 committee is meeting, you should receive a "Letter of Invitation" or written notice that tells you the reason the meeting is being held. If it is a meeting with the school's principal you will most likely receive written notice only if it is to discuss a
disciplinary issue. (See P&A's "Discipline of Students with Disabilities" fact sheet)

#2---Know who will be present at the meeting. If it is an IEP meeting, the invitation should list the names and positions of the people invited. If the Section 504 committee is meeting then the notice may also list this information. Make sure that the necessary people are invited to the meeting. Example: if school bus matters
will be discussed, ask that district transportation staff be present.

#3---Know what issues you want to discuss at the meeting. The invitation may tell you only what the school or district wants to discuss with you, but the meeting is also an opportunity for you to discuss your concerns with them. It is often helpful to make a list of your issues and carry this list with you to the meeting. This way you won't forget to talk about what is important to you.

#4---Consult with the student's health care provider or mental health counselor. If needed, invite them to participate in the meeting or ask them to write a note about the student's diagnosis, symptoms, or needs at school. (See P&A's "Health Needs of Students Attending Public Schools" fact sheet)

#5---Bring your copies to the meeting. This includes copies of the student's current IEP, most recent evaluation, grades, doctor's notes and whatever else you would like to have the team or committee review and consider. You can refer to these copies during your meeting. It is also a good idea to bring along your invitation to the meeting.

#6---Review your student handbook or guide to special education services. It is important that you know what rules or procedures the school will be following and what your rights are if you disagree with the meeting's outcome.

#7---Bring along another person. Whenever possible, it is a good idea for both parents to attend IEP or Section 504 meetings. If that is not possible, then you should feel free to bring along anyone who is knowledgeable about the student or special education process and (most importantly) whom you trust. This person can help you take notes, etc.

Advocacy Tips for during the meeting:

#1---Make sure accurate notes are taken. If it is an IEP or Section 504 meeting, ask that someone from the district or school take notes of the meeting. Make sure that you know who is responsible for this task. But, it's also important that you take notes as well. The Individuals with Disabilities Education Improvement Act (IDEA 2004)
guarantees parents the right to participate fully in the IEP meetings. However, IDEA 2004 does not say anything about the right to tape record meetings.

The US Department of Education guidance states that schools have the right to refuse or limit the parents' ability to record IEP meetings. However, at least one court has specifically said that parents have a right to record the meeting if it helps those parents to participate. So, if you feel that it would help you fully represent your child at the meeting because you won't have to talk and take notes, or because one parent cannot attend, then tell the district you want to tape record the meeting.

#2---Make sure that introductions are made before you get down to business. Ask everyone to state his or her name and position. This is usually a good "ice breaker". But more importantly, this helps you to know whether the necessary people are participating in the meeting. If someone attends that you object to participating in the
meeting, make your objection known to the group. However, if the district does not agree, you may not be able to force that person to leave the meeting.

#3---Remain calm and be courteous. This can be very difficult to do when you disagree with what is being said.

#4---Stay focused. Once again this can be very difficult during a tension-filled meeting. Use your list of issues to help keep yourself focused and keep the meeting on track.

#5---Make sure that there is a discussion of the student's strengths and abilities. This is true whether it is a meeting with the school principal, IEP team, or Section 504 committee. This is often a good topic to start the meeting.

#6---Ask for Prior Written Notice. This tip is only for use at IEP meetings. If the school or district wants to make changes to the student's special education program or will not agree with what you want for the student, then you can request a written explanation. This written explanation is called Prior Written Notice. (See P&A "Prior Written Notice" fact sheet)

#7---Ask that your notes be reviewed by others present and included in the official record of the meeting (such as the meeting minutes or conference summary). These notes should reflect your understanding of what was said at the meeting.

#8---Always read everything that you are asked to sign. This includes Attendance or Sign-in Sheets.

#9---If you don't agree, don't sign. If you don't agree with the information stated on the paper, then don't sign it. This is especially important when attending an IEP or Section 504 meeting.

#10---Ask for copies of the meeting notes and anything else that you were asked to sign at the meeting. Keep these. They may come in handy in the future if you and the school or district cannot agree about what was said at the meeting.

#11---Know what happens next. At the end of the meeting, make sure you know what is supposed to happen next. If you are not sure who is supposed to do what, then ask before the meeting comes to a close and everyone leaves.

Advocacy Tips for after the meeting (or phone call):

#1---Write a follow-up letter. This is a very good way to confirm what was said during phone conversations. This letter is very important and should be written soon after the meeting or phone call ends. It should state what was said, who is supposed to do what, and when that task is supposed to be completed.

#2---Keep a copy of everything that you give to the school or district or that is given to you at the meeting. It is usually a good idea to make a file of these documents and keep them for at least three years. For example, you may want to organize your file
by year or by topic, like medical records or discipline records.

#3---Send all of your letters by certified mail or get a signed receipt if you deliver them yourself. If you take your letters to a school or district office, then ask the person in the office to write "Received" on your copy along with the date and that person's signature.

#4---Get help. If you do not agree with the decisions made at the meeting or if you have questions that are not answered, then you should contact an attorney or contact the advocacy organizations listed in your guide to special education services.

Sources for the information in this fact sheet:
20 U.S.C § 1401 (et seq.)
34 C.F.R. § 300, Appendix A

Vulnerability at School

by Cate in IL

I think we all need to come to grips with a genuinely ugly truth. There are people who like hurting children in our world. Such people will be drawn to work in school
systems. Some of them hurt children through sex. At least that is recognized and illegal. Still difficult to reveal and prosecute, however.at least it is illegal.

Just as ugly are those who have lost all patience and will not assume responsibility for their choices to hurt children. They blame the child for their actions the way a pedophile claims the child was the seducer. There are also sick individuals who just like watching a child's pain. There are all kinds of twists in the world,but those who hurt children want access to them.

There are also what I call bureaucrat-sadists . They love to find ways to follow the rules to actually torture people (especially children) while completely ignoring the intent of the rules to protect anyone. Our children are more susceptible to these last than most because there are so many rules to protect the square pegs (typical children) that were never intended to hurt our round peg-children but hold that possibility. It is supposed to be "unimaginable" for a pedophile to work in a school. Well, sometimes they are there. There are notbackground checks for the rest of the twisted folk who want to hurt children in other ways. They are clearly there too.

It is hard to get the public to move past that inherent trust our parents had and we want when we send our children to school. Some of our parents' trust was misplaced. However, our children did not join the public school systems en masse until 1975. That was when the door opened a couple of inches, and we have (and continue) to shove a few more inches at that door in all its forms every year since.

However, our children are the most vulnerable in any school. They will draw abusers. We cannot afford to pretend otherwise. We have to be vigilant as parents more than any other group of parents affiliated with the school systems. Some of our teachers are wonderful. But we cannot afford to trust anyone without building that trust as individuals.

Due Process Rules Lock Out Remedies for Kids with Disabilities

by Cate in Illinois,
Mother From Hell 2

I have come to a difficult conclusion as of late. It is not enough for us to know what the laws are when we have no access to the court to see them enforced. It can cost $5,000 to $10,000 before you even get to Due Process. If you settle, or if they capitulate before Due Process, the family is left to eat all the legal costs at this time. (Based on a horrible decision from the Supreme Court in 2001 about fair housing, Buckhannon.)

About two thirds of the hearing officers in Illinois find in favor of the schools regardless of the evidence. So to obtain an appropriate education for your child (to which Federal law entitles them), you have to be prepared to begin a new contract with your lawyer (for what will cost as much or probably more than the Due Process) in the state or federal court.

Federal legislators have left us to police the schools ourselves without offering training. Fine, we are finally getting ourselves organized to be trained. That is important, but it is not enough. It is as though we have been marked to be the police cars on this Special Education Highway that is filled with tanks of school administrators. It is not enough that Congress has created rules and signs to ensure our children receive an appropriate education.

Most districts treat our children's differences from the "average" child as something to be tolerated at best. The administrator's job it to serve the entire school system. Our children are only a small part of the system, so they warrant no protection or service. School boards are elected mostly by those whose children whose needs are not so different. School boards employee the administrators. That relationship will not change. The rest of the community has a religious-like faith in the schools. We are the oddballs in town because we cannot share that faith. Those things will not change.

Even knowing the laws and pulling the tanks over with a warning about a ticket means nothing unless we can access the courts. It is like asking a state highway patrol officer to do his job without any access to the courts. How many people would tear up the warning ticket or a regular ticket if it meant no more than paper? How many people would voluntarily respect a ticket that is unrelated to the court process? How many people would pull over voluntarily? How many people would pay any attention to the highway patrol at all? It is untenable as a functioning process without access to the courts.

We cannot afford to access Due Process as needed under these circumstances. We need to change the system and change ourselves. It is absolutely true that we need to know the laws, because we cannot expect school administrators to abide by them with any consistency. Clearly there are far too many who have no respect for American Law of its own accord.

It is we, the middle and lower economic classes, who fill the public schools with our children. As long as we don't commit a crime, we are not expected to have legal needs of any remarkable cost. The rich and the businesses are those typically found in our civil courts. Thus, we are the classes barred from the court's protection by the costs. Of course, most of those in our economic demographic are unaware of the fact that families of children with special needs have a myriad of costs that add up to staggering amounts of time and money per month. We are a weird subculture within the larger demographic who has less disposable income than anyone suspects. We need to get our neighbors, school boards, legislators, law schools and state bars to understand we need their help and can pay them something for it.

However, we cannot cough up $10,000 on a regular basis. Most of us cannot scrounge up $10,000 as needed either. However, we have to access the courts to protect our children. This is a democracy. Therefore, we can create change.

Proposal for change

First, we need to organize to require state bars to require knowledge of the basics of Special Education Laws on state bar exams. It needs to be required to maintain a license. We need more lawyers who can handle this in as cost effective a manner as a will. Currently, there are very, very few lawyers who understand it at all.

Second, there is a pilot program being run out of the State of Maryland. They have such a backlog of domestic cases that they are allowing students from two law schools to assist regular people to come before the courts "Pro Se". Pro Se is pretty frightening when you find out what is means. The courts have become a game of strategy with all their own rules regardless of the content.

Going before the courts without a lawyer, Pro Se, is a ridiculous idea for most of us. It is like being a really talented ball player who can throw a basket from almost anywhere on the court. However, if that player does not know the rules of the game (different rules for different courts like local, high school, college and professional basketball), he is going to lose every game very badly. You have to know the rules and the strategies to have any hope of winning. We need programs like the one in Maryland for Special Education in every state.

Third, we need a means to learn enough about the rules and strategies to couple with our knowledge of IDEA law to play the game ourselves if need be. We need internet training programs from places like Concordia University etc; to allow us to learn with financing plans and/or scholarships etc; to teach us enough of the basics to survive in court with any hope of getting what Congress promised our children. (Nice thing about an internet course is that most are available regardless of what shift you work.) We need local courses to do this from Community Colleges and Universities. Some of us may be able to afford a few thousand to protect our children ourselves in the courts.

Why we need change

As things stand now, a school can punish a family with a child who has special needs and dares to stand up to their power by failing to do anything but capitulate before Due Process. (If you know enough about law and bureaucracy to get that far.) They can wipe us out financially and return to practices that we recognize hurt our children and deny what Congress provided for them. Who can go back to Due Process the way it is set up now?

I pray that the Supreme Court is hearing the New York case to protect our children. It is a case that will determine if the school has the right to prove that its program is appropriate by taking the time to implement it and risk huge damage to our children.

Administrators will implement whatever they please regardless of the potential damage for the same reason they stall in providing any services: stalling is a cost savings. I wonder if the Supreme Court members even know parents who have sat through IEP meetings where the teachers all follow the administrator's lead for fear of later retaliation that includes losing their jobs.

A lot of "teams" out here are teams in name only. Our children are already starting with some inherent "damage" to some ability relating to their academic prowess. If the Supreme Court thinks all school administrators will ensure our children's rights to an appropriate education over their budgets and school boards' expectations, they have become utterly removed from our realities. There would have been no need for IDEA in the first place if this faith in local educators/administrators were true in any consistent sense for our children.

The world comes to us as individuals, but the need for IDEA exists because some of the individuals who are supposed to meet our children's educational needs so thoroughly fail in their duty to do so. Our faith in the educational system must be earned because most of us have seen our children failed by the school and been burned trying to make changes. When there are individuals who work to serve our children along with the rest of the school population, we applaud and appreciate them. However, for some, their sense of individual morality evaporates when part of the larger group of administration. It is as though they were masked and no longer responsible for their choices when they are part of a larger group.

The same is true of some teachers on an IEP team. We see this as parents over and over again. There are studies about group and corporate behavior and how it totally differs from what individuals who participate in it would do if the choices were tied to individual morality. Sadly, there are many administrators who could be studied the same way to verify the same behavior that we see with a sad frequency. They bear no personal sense of responsibility toward our children. Only we do.

I am worried because the Supreme Court has already decided that when we pay for an expert to testify as to the inappropriateness of the school's plan and/or the appropriateness of our proposal for our child's education, they have already stuck our families with the expenses of those experts we need. That is not something the school district is obligated to pay even if we win the case now. To pay all the experts who will be needed to scope out the damage done to each child in each case could raise the cost of the individual case even far higher than its current expenses. Most Due Process cases in Illinois do not obligate the district to pay the family's legal expenses when we win.

My latest lesson (learned the hard way), is that you should always write on the supplement that it is a "Supplement to the IEP" and have anyone who participated in its making sign it as such with the date. I thought I was standing on two legs and am now looking for crutches since the content of the document is accurate, but it was filed as something else.

What is clear is that my husband and I are the only people who will stand up for my son, and the district administration assumes no responsibility for past harm or harm they are about to create. I will have to show it is part of a pattern of lies. Of course, there have been so many lies that there are plenty of those upon which to rebuild the case.

The first time you read and grasp this epistle, the task may seem daunting. However, there is no demographic better trained for tenacity than the parents of children with special needs. After all, our children have trained us for tenacity. Their needs are constant. So let's keep moving and include a viable means of access to the courts on our list of things to do in this area.

I may have to bite the next person who tells me to "just bite the bullet" whenever my child's rights need the protection of a lawyer with all the costs it entails. Maybe I'll see if he'll pay all the extra expenses in our family first, and then check my "disposable" income to see if I can afford a bullet to bite.

PS. If anyone from this group is going to the Empowerment for Parents thing in Virginia, please take this with you. Knowledge of Special Education law is not enough. It is a valuable part of the beginning, but not enough to create a system of checks and balances in power that precludes abuse.