Showing posts with label Back to School. Show all posts
Showing posts with label Back to School. Show all posts

Wednesday, September 14, 2011

Some Things are Harder than the Birds and the Bees: Talking About My Child's Medical Condition with Schoolmates

I have to admit I was a little worried about how the talk at school would go. Even though I am well-trained in communicating with kids, I am still a mom first. And moms worry! It’s part of our DNA.

My kids had just started a new school and the teachers requested that I talk to their classmates about their medical issues. Both of our children have cystic fibrosis. They need to take medication (pancreatic enzymes) to help their food digest properly. Of course their classmates have noticed Jacob and Kasey chucking down a handful of pills at lunchtime and have barraged my children- and their teachers- with questions.  


I spent a couple of hours preparing for the talk. I wanted it to be fun and informative- sort of like a health education class. Kids need visuals so I found a diagram of the digestive system that could be colored. Jacob and Kasey helped me gather some show-and-tell items: A nebulizer cup, an Albuteral puffer, and opened up pancreatic enzymes placed in a baggie (kids always want to know “what’s inside”). We also made a plate of brownies and grapes (to eat) to help teach about how kids with CF have different nutritional needs than most of the population.
 
We decided together what to talk about and I gave them lots of choices: Do you want to talk or have me do it? Will you be with me or at your desk? Kasey (in first grade) decided to have me do all the talking but she would be my helper. Jacob (third grade) decided to do the talking about pancreatic enzymes and have me teach about the rest. We were prepared and the kids were excited. Kasey’s little girlfriends were buzzing with anticipation. They were all so curious about CF.
 
I was nervous. I do plenty of public speaking but I was more nervous about speaking in front of twenty first and third graders than 200 adults! These are my babies! And this is “life-and-death” stuff in front of their classmates. What if I blew it?

One of my biggest fears was that a child would innocently ask, “Will Jacob (or Kasey) die from cystic fibrosis?” The honest “grown up” answer is, “It’s possible unless there is a cure since the median life expectancy is 37 at this time.” But that’s not something a class full of seven and nine-year-olds needs to know. I wasn’t exactly sure how I would answer this question and I wasn’t sure if my kids really understood this reality even though we had discussed it before when they asked the very same question years earlier. So, taking my cues from Dr. Foster Cline, I decided to ask them.  

Preparing for the worst, I casually (but with heart pounding) asked my son, “So Jacob. What would you say if someone at school asks you if you can die from CF?” He thought for a moment. Then he said, “Well, I would say people do die from CF. But we are more likely to live longer when we take good care of our bodies.” Wow!! The answer of my dreams! He knows the reality of the situation but also understands the role he plays in taking responsibility for his healthcare. Plus he understands the long-term impact of his healthcare decisions. 

That massively encouraged me. Later on, I asked Kasey the same thing. She said, “Well, you can but if you eat healthy and take all your medicine then maybe not.” Bingo! Two for two. Both kids have an understanding of the reality of cystic fibrosis and are hopeful about positive outcomes based on their personal choices about self-care. I have to say I was a little surprised. I didn’t think that children this young could have such a mature attitude and understanding of such a heavy situation.
 
The talks went well that day. All of the children were curious, open, and delightful. We had a lot of fun together and they loved eating the brownies and grapes for snack. Kasey even demonstrated how she could chuck down four pills in one swallow. The kids couldn’t have been more amazed if it were a flaming sword!

And no one even asked the dreaded question. Go figure.

                                         *********
Click here to listen to the audio recording of Lisa teaching her daughter's class about CF.
Lisa C. Greene is the mother of two children with cystic fibrosis, a certified parent coach, parenting educator, and public speaker. She is also the co-author with Foster Cline, MD of the award-winning Love and Logic® book “Parenting Children with Health Issues.”   For more information, visit www.ParentingChildrenWithHealthIssues.com




Wednesday, September 7, 2011

Back to School Days with Special Medical Needs: Tips for Good Communication with Teachers and School Staff


Communicating well is a critical skill that many of us simply weren't born with. The good news is that communication skills can be easily learned.

When a child has special medical needs, effective communication skills are especially important. Here are some tips for starting the school year out right for your child and teachers alike.

1. Communicate upfront about your child's needs. In the first two blogs in our "Back to SchoolDays" series, we discussed how to initiate health care plans, 504 Plans and IEPs.
Before school starts, initiate a discussion about your child's needs with school staff. Be sure to document everything in writing, especially agreements that are made.

2. Request, don't demand. Some people go into a meeting with school staff with a long list of demands and an attitude that says, "Do it or else." We call this the Drill Sergeant approach. The approach you take will set the tone for both the current meeting and perhaps your relationship with the school for several years.

There is an art to being an effective advocate for your child; it takes a bit of finesse. You want to come through as firm but not demanding; friendly and cooperative but not a pushover; and as a team player. It can be a fine line at times.

It helps me to remember to "be assertive but not aggressive" and there's a big difference. Being aggressive is telling others what they have to do and is seldom effective. Being assertive is telling others what we need.

Aggressive: You need to move my kid away from that other kid who is coughing.
Assertive: I would appreciate it if you could move my son away from the kid who is coughing so he doesn’t get sick. 

Human nature says that when one demands, the other resists so aggression and demands don’t usually get us very far. However, sharing what we need and phrasing it politely will generally result in cooperation. Note that this is true with our kids and spouses, too.

Most teachers are eager to do what's right for your child within reason when asked nicely. Ask, discuss, negotiate and problem-solve.

3. Be aware of how your parenting style will affect your child at school. The  relationship between children, parents, teachers and school administrators is a very dynamic one. If you are hovering over your child like a turbo charged helicopter at school, it will affect your reputation and relationships with staff. This may also "trickle down" to your child in the classroom both with teachers and the other kids.

As unfair as it seems, teachers do form opinions about their students and, like all human beings, prefer some over others. Parents are definitely a part of this equation. It's human nature to go the extra mile for someone that you like. So, be likable. 

4. Be a problem-solver, not a finger pointer. When things go wrong, it's easy to get upset and blame teachers and classmates instead of looking at the role our child might have played in causing the problem. Remember, there are always two sides to every story.

When there is a problem at school, parents are best advised to use the very same collaborative problem solving skills they use with their kids as a Consultant Parent. Foster Cline, MD gives us the attitudes for Consultant Parents:


  • Use Choices, not Demands
  • Are Sad for, Not Mad at
  • Are Curious, not Blaming
  • Are Empathetic, not Excusing
  • Are Consequential, not Punitive
  • Are Caring, but not Rescuing
Read more about parenting styles in our booklet called "Parenting Children with Health Issues and Other Special Needs: Love and Logic Essentials for Raising Happy, Healthier Kids" by Foster W. Cline and Lisa C. Greene.

With a handful of effective communication skills, parents and teachers can be excellent partners in doing what is best for our children. This goes for the parent/doctor relationship as well.
 
*********
Lisa C. Greene is the mother of two children with cystic fibrosis, a certified parent coach, parenting educator, and public speaker. She is also the co-author with FosterCline, MD of the award-winning Love and Logic® book “Parenting Children with Health Issues.”   For more information, visit www.ParentingChildrenWithHealthIssues.com

Wednesday, August 31, 2011

Back to School Days with Special Medical Needs: Getting Your Child's Special Needs Met with IEP and 504 Plans

Getting Your Child's Educational Needs Met with IEP and 504 Plans

This blog is the second in our "Back to SchoolDaze" series and is a continuation of our discussion about effective communication with teachers and school staff. This week we'll look at IEP and 504 Plans which are federal regulations put in place to guarantee an education for children with special needs (which includes medical issues).

IEP and 504 Plans are two separate plans with distinct requirements although there can be some overlap between the two. Each plan creates a legal document which outlines your child's specific needs and accommodations while at school. Parents and schools generally work together to create the plan for the child.  

Although the subject is complex and confusing, it's important for you to be aware of the basics. Taking medication at school, meeting dietary requirements, attendance, schoolwork, the ability to perform at grade level, exceptions to grading policies, and perhaps even safety issues (like accommodations for allergies), may all be affected by your awareness of your child's rights.

Busy, budget-strapped school systems and administrators may not always have your child's best interests as a priority. It's not that they don't care- of course they do. It's just a matter of competing priorities, special interests, and needs. Parents need to be proactive advocates for their children and it starts with learning about these important issues. Your child's best interests are in your hands. And as you set a good example of standing up for your child's needs, you'll be teaching your child how to look out for him or herself as well.

Schools may or may not initiate the process of putting a plan in place. Some schools may even discourage you  for various reasons. With 1000's of schools across America, there is a wide range of good, bad and ugly. Unfortunately, there are plenty of lawsuits against schools that refuse to (or simply can't) meet the requirements of these federal regulations. Having a basic understanding of these plans will help give you the power and tools to ensure that your child's physical and educational needs are met at school.

Federal regulations have been set up to prevent discrimination against individuals with disabilities. As a part of these regulations, both IEP and 504 Plans ensure that all children are granted an opportunity to receive an education regardless of disability or physical limitation. There are subtle but very important differences between the two types of plans. Deciding which one is right for your child is essential and should be discussed with experts if you are unsure. A primary criteria is whether or not your child needs specialized education. If this is the case, it is most likely that you would need an Individualized Educational Plan (IEP).

IEP Basics: IEPs speak specifically to the rights of a "Free Appropriate Public Education (FAPE)" and are derived from the Individuals with Disabilities Education Act (IDEA).  The Individualized Educational Plan (IEP) was developed to ensure that a child who has a disability identified under the law and is attending an elementary or secondary educational institution receives specialized instruction and related services.

"Special education" under IDEA does not mean placement into a special education classroom. It means the child has been identified as having unique educational needs related to his or her disability and is entitled to an IEP to meet these needs. To be eligible for special education services, it is necessary to prove that the child has a disability that interferes with his or her education and performance. Children who receive special education services under the IDEA are automatically protected under Section 504.

Not all students who have disabilities require specialized instruction. For students with disabilities who do not require specialized instruction but need the assurance that they will receive equal access to public education and services, a document called a 504 Plan is created to outline their specific requirements.

504 Plan Basics: 504 Plans are derived from Section 504 of the Rehabilitation Act and the Americans with Disabilities Act (ADA). Section 504 is a civil rights law that applies to all institutions receiving public funds including public schools, libraries, etc. and is designed to guarantee that people with disabilities will not be discriminated against.

Under Section 504, the child with a disability may receive accommodations and modifications that are not available to children who are not disabled. Examples of common 504 Plan accommodations include preferential seating, modified homework and testing schedules, and assistive technology (like recording devices for note-taking, special keyboards for physical disabilities, etc.).

Some state laws require a health care plan to be in place for all students who require medication and/or treatment while in school attendance. This could be a 504 Plan, IEP, or another document called an Individualized Health Care Plan (IHCP or IHP). IHCP's give detailed information about the medical services your child will require at school. See last week's blog for more information on IHCP's.

IEP or 504 Plan or IHCP: Which One? Very generally speaking, the question of whether you need an IEP or 504 Plan is that of special accommodation. Does your child need something different than what is already available at the school? If there are already systems in place to meet your child's healthcare needs, then an IHCP might be all you need. Most schools have systems in place to deal with taking pills, food allergies, asthma and other more common health issues. But if your child needs special accommodations, then an IEP or 504 Plan is probably needed. And the primary distinction between these two plans is the need for specialized instruction. If your child needs specialized instruction, then the IEP provides for this.

Of course there are exceptions and caveats to all of this and here's an important one: If your child is experiencing learning difficulties due to excessive absences from illness, he or she might qualify for an IEP under the "Other Health Impairments" section of the Individuals with Disabilities Education Act (IDEA).

"Other Health Impairment" is one of the 14 categories of disability listed in the IDEA. Under this section, a child who has an “other health impairment” is likely to be eligible for special services to help the child address his or her special educational needs resulting from the disability. Children with cystic fibrosis, cancer, or other medical conditions that require extended hospital stays or periods of disability may fall under this category and be eligible for private tutoring.

There is often confusion when it comes to private schools and their ability to serve children’s needs in this area. It is important to remember that IEP and 504 Plans are only guaranteed for children at schools that receive government funds and/or services. It would be vital to speak in depth to administration of any private school you are interested in your child attending to see whether or not this is the case for them and how, exactly, these matters are handled.

Where to Start? If your child has a disability or chronic health condition and may have need of accommodations during the school year, the place to start is to request a meeting in writing with the teacher, copied to anyone else you feel is appropriate (e.g. the nurse, principal.) This needs to be formally written, not a quick ‘note’ sent in your child’s folder or email. This starts a ‘clock’ on a timeline the school must work within to ensure the child’s needs are handled in a timely manner.

Outline your main concerns in the letter and state you are requesting a team meeting to discuss the need for an IEP or 504 plan for your child. They are required to respond to you and schedule a meeting within a short time. Your child’s medical provider can also help a great deal by providing a letter stipulating what your child’s needs are. If your child’s care team or hospital has access to one, medical social workers are wonderful resources as well.

I did not need a 504 Plan for my own two children with cystic fibrosis until this year. My children's needs have always been met by providing the school with a letter that served as a health care plan (the subject of last week's blog). But as my oldest goes into middle school, it's time to take the steps to ensure that we have a plan in place to deal with the complexities his illness might bring especially as he moves into high school.

So, now that you have a basic understanding of IEP and 504 Plans, I hope you'll join me next week for a blog on how to present and discuss these plans with your school administrators in ways that create a positive, collaborative relationship rather than an adversarial one.

There are no absolute guarantees that what you put in your plan will be met. Designing a well-written plan that is likely to be accepted by the school and will meet your child's needs now and into the future is an art form that requires patience, knowledge, and good communication skills. Take the time learn about this now rather than waiting until there's a problem at school. Your child's future is at stake.

*********
Lisa C. Greene is the mother of two children with cystic fibrosis, a certified parent coach, parenting educator, and public speaker. She is also the co-author with Foster Cline, MD of the award-winning Love and Logic® book “ParentingChildren with Health Issues.”   For more information, visit www.ParentingChildrenWithHealthIssues.com

This information is not meant to replace professional medical, legal, or mental health care. 

References:
Conners, S., M. Ed (2002), Section 504, the Americans with Disabilities Act (ADA)
vs. The Individuals with Disabilities Education Act (IDEA): What is the Difference,
Online at: http://www.nldline.com/iep_vs_504.htm

Holly, Tips for Completing a 504 Plan, www.TipsForCFParents.com

Logsdon, A. (20XX), Top 5 Comparative Points Between Section 504 and IDEA,
Online at:
http://learningdisabilities.about.com/od/disabilitylaws/tp/504IDEAdifferen.htm

 

University of WA (2002), What is the difference between an IEP and a 504 Plan?,
Online at:
http://www.washington.edu/doit/Stem/articles?52


US Dept of Education, Office for Civil Rights,
http://www2.ed.gov/about/offices/list/ocr/504faq.html