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.

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