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KidsPeace believes that it is helpful to our readers to reprint some Healing Magazine articles that are as relevant today as when they were published in our Magazine. This article discusses how parents of special needs students should strive to interact well with their children's teachers and is written by author and Autisim advocate Ellen Notbohm. It was published in the Spring/Summer 2007 issue.

The View from the Other Side of the Desk: Are you a ‘challenging parent?’

What special education teachers want you to know

by Ellen Notbohm

As transitions go, my son’s transition to middle school had been smoother than any parent with an Individualized Education Plan (IEP) in hand could hope for. It had been a very good year with very good teachers. But, as the year wound down with alarming speed, the scheduling of the annual IEP meeting just wasn’t happening. Repeated requests – at increasing decibel level – to resource teachers went unresolved amid scheduling problems, administrative issues, illnesses and other roadblocks. When we finally did meet, five days before the end of the school year, I told the excellent resource teacher only half-jokingly, “You’re almost there. Only five more days and then you are done with me.”

And this excellent teacher stopped in his tracks and looked at me with surprise. “Oh no,” he said.  “No. I have had some challenging parents this year, and you are not one of them.”

At that, it was my turn to stop in my tracks. What, I wanted very much to know, constitutes a “challenging” parent?  It was too intriguing a thought to leave on the table so, a few months later, we came back to it. His very thoughtfully painted portrait of a “challenging” parent led me to ask other special educators, teachers of students aged toddler to high school across several different school districts, the same question. And, while each came from his/her own unique situation, the common threads in their thoughts were striking. A number of these common threads formed the basis for my book Ten Things Your Student with Autism Wishes You Knew. Here then is the view from the other side of the desk, the voice of your special education teacher:

Be team-oriented

A combative attitude does not enhance our ability to make progress with your child. Our relationship should be an alliance, not an adversarial face off. We are all here because of the child; he or she is our common interest, and it is important not to lose sight of that. It is not about me or you, or whether we like each other. 

Give me the courtesy of a clean slate. You may have had bad experiences with previous teachers or schools, but putting past conflicts or issues onto me, coming in with guns blazing before you even have a chance to get to know me or my program is counterproductive. “This is what has happened in the past, and I expect the same from you” is looking for trouble where it is possible that none exists. 

There is a difference between being assertive and being aggressive – and there is a cost. Teachers appreciate parents who are knowledgeable, effective advocates for their children. Knowing your rights and knowing the facts of your situation, and requesting services and accommodations firmly but respectfully are light years removed from being a fist-pounder.

We are not here for the money or the recognition. We are here because we love these kids. In an ideal world, I want to share with the parent any inside perspective I have about ‘the system’ and how it affects decisions made about their child. But, if I sense in any way that the parent will use the information in a way that comes back on me or threatens my job, it is only natural that I will not share.

Undermining me undermines your child’s learning.  Communicating to your child that everything that is going wrong is the school’s fault undermines your child’s ability to trust me, to comply with necessary classroom boundaries and, ultimately, to learn.

All children, even special needs children, need to assume some level of responsibility for their behavior and its consequences. We are sometimes faced with parents who say, “I cannot believe my child would do such a thing. It must be somebody else’s fault. If you had been doing this, he wouldn’t have been doing that.” Sometimes that’s the case. However, when a parent insists it is always the case, I need to gently suggest that a closer look be taken at what is actually going on.

Step back and listen as open-mindedly as possible when faced with information that makes your blood pressure rise. It’s very common for children to exhibit a different set of behaviors at school than they do at home. 

Having to be both teacher and case manager can put me in a very difficult position. Especially in early childhood education, it often falls on the teacher/case manager to identify the fact that my particular classroom or program isn’t the best fit for your child.

Please know that, when I tell you we need to transition your child to a different setting, it isn’t because I ‘don’t like him.’ Hear me as objectively as possible when I tell you that he is struggling too hard in the current placement and would benefit from a different setting, that we need to modify the Individualized Family Service Plan (IFSP) or IEP and find a better environment.

Don’t assume I know everything about your child. I may only have the prior year’s academic information, and perhaps no personal information at all. Tell me anything you think is important for me to know about your “whole child.” Be a resource for us, a bridge between programs.  Share with us what has worked or not worked with your child in the past.

We cannot do everything for your child. Your child is entitled by law to a free and appropriate education in the least restrictive setting. That is not equivalent to the best possible education. Think of it this way: You get the Chevy; you don’t get the Cadillac. You get safe, reliable transportation, but you don’t get the CD player and the leather seats. It’s a distinction many parents don’t understand that special education is intended to provide for adequate growth, not maximum possible growth.

Federal law mandates that we make sure that kids who have a disability are making adequate progress, as defined and measured yearly in their IEPs. The idea behind it is that, without accommodation, they wouldn’t make adequate progress in general education, and therefore would not be getting a free and appropriate public education.

Let’s say you have a fifth grader who is reading at a 2nd grade level. It happens; teachers commonly look at their classes and see a developmental range, so there are kids who end up in 4th or 5th grade reading several grade levels behind. So we set a goal, in a calendar year, for the child to make a year’s growth, which is what his peers would make.  But he is still behind; he is not catching up. In order for him to catch up, he would have to outpace his peers. Some kids do that, but it’s very difficult and not realistic.

We have many commitments to multiple content areas. If we were to spend half the day on reading alone – sure, we could catch the kid up. But that’s not appropriate because we give up everything else. And so we always have that discussion every year in an IEP meeting. We have a certain amount of time. How do we set goals? How much time do we need to meet each goal? How much are we going to be able to accomplish given math, science, social studies, all of these other content areas required and from which kids benefit?

Your child is not my only student. When I am meeting with you, when we are in a discussion and problem-solving mode – in that moment, your student is the only one I am concerned about. But back in my classroom, I have anywhere from a few to a few dozen other students in my caseload, and I have the scheduling restrictions that naturally come with that caseload. It simply is not possible for the needs of one child to dictate my entire day. Asking that of me is painful for both of us.

Early intervention works

Here is an extension of a universal truth:  The earlier the better – and the better the earlier the better. Catch things early, intervene well and include your family, not just the school. No one was ever sorry they intervened early, but legions of families regret “waiting to see if he outgrows it.”

See the positive in your child

Have an honest understanding of what the range of your child’s disability means, but also recognize his strengths. Too often, the most difficult parents to work with are the ones who cannot see the positive qualities of their kid. Their focus is stuck on what the child can’t do. Perhaps they do not want to have a child with a disability. Perhaps they are stuck in the grieving process. But, for the teacher, it is very hard to deal with. 

Promote independence. Help your child learn to do things for himself, rather than doing them for him. Many teachers are parents themselves and understand the time stress families are under. But, whether it’s homework or personal organization, expedience in the moment will impede his learning to be independent in the long run. If you pack and unpack his backpack for him every day, how will he learn the importance of being organized, knowing where things are when they are needed, how to find items or information? The parents who are most effective are the ones who teach as well as parent. The two are synonymous.

© 2006 Ellen Notbohm. This article is based on the book Ten Things Your Student With Autism Wishes You Knew, a 2006 iParenting Media Award winner.

Ellen Notbohm is author of Ten Things Every Child with Autism Wishes You Knew, a ForeWord 2005 Book of the Year Honorable Mention winner, and co-author of the award-winning 1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders. For article reprint permission, book excerpts, to learn more or to contact Ellen, please visit www.ellennotbohm.com.

KidsPeace believes that it is helpful to our readers to reprint some Healing Magazine articles that are as relevant today as when they were published in our Magazine. This article discusses how communication is so important when doctors prescribe psychotropic medications to children. This article was published in the Spring/Summer 2006 issue.

Children’s Psychotropic Medications: Communication is key

By Pat Sullivan

Millions of children take prescription psychotropic medications to treat a wide range of conditions that can destroy their quality of life. According to Dr. Adnan B. Zawawi, Psychiatrist at KidsPeace Psychiatric Hospital, it is imperative that parents and physicians establish open communication early in a child’s treatment. “At KidsPeace, we provide parents with written information on any medications we might prescribe in the admissions packet so that parents can make informed decisions regarding their children’s treatment. They must give us written consent before we start any medication,” Zawawi says. He also wants to dispel a common myth: “These are not drugs; they are medications. Just as we prescribe medications for hypertension, diabetes or infections, we prescribe medications for illnesses of the mind.”

There are several classes of psychotropic medications that are typically prescribed for youth:

Antidepressants

• Tricyclics – Older drugs. These medications (some brand names include Adapin, Elavil, Pamelor and Tofranil) are typically only used when SSRIs (see below) are ineffective.

• SSRIs (Selective Serotonin Reuptake Inhibitors) – Newer antidepressants (some brand names include Prozac, Zoloft, Paxil and Lexapro) used more commonly because they restore deficits in certain neurotransmitters that facilitate communication between brain cells (neurons) and return the brain to normal functioning with few side effects.

Dr. Zawawi emphasizes that depression is a serious medical problem that causes the brain to function differently from those of individuals who are not depressed. The benefits of taking antidepressants far outweigh the risks associated with them. Dr. Zawawi also notes that NIH studies have shown that patients treated with a combination of SSRIs and therapy had higher success rates than those taking SSRIs alone or those undergoing therapy alone.

Typically, antidepressants are used for a year or two, with cessation being gradual and closely supervised by a physician. One should never abruptly stop antidepressants. Dr. Zawawi emphasizes that starting a child on an antidepressant or other psychotropic medication is a major decision that is based on improving the child’s quality of life, happiness and productivity.

Mood Stabilizers

• Lithium – A salt that has been used since the 1970s to treat bipolar disorder, particularly manic episodes; depression while on Lithium may indicate that a higher dosage is needed. It is important to monitor levels of Lithium (some brand names include: Cibalith-S, Eskalith, Lithane, Lithobid, Lithonate and Lithotabs) in the blood stream and to consult with prescribing doctors before taking any medications, including, but not limited to, ibuprofen, antihypertensives, muscle relaxers and diuretics.

• Anticonvulsants – Helpful in controlling mood swings, although their main use is to prevent seizures (some brand names include Depakote, Topamax, Tegetrol, Lamictal and Clonazepam).

• Atypical Antipsychotics – Used alone or in combination with mood stabilizers can be quite effective, although it is very important to use as directed (brands include Abilify, Navene, Risperdal, Seroquel).

Bipolar disorders in adults are marked by wide-ranging mood swings from deep depression to unbridled mania, but, according to Dr. Zawawi, children experience fewer “top of the world” highs and deep troughs. Instead, bipolar children are typically irritable, cranky and miserable, with sometimes explosive mood swings that can result in unhappiness, difficulty in school and trouble with the law. “Mood disorders require medication,” Zawawi says. “Lithium is the standard and has been used for a long time, but the atypicals are gaining popularity. All mood stabilizers must be used as directed.”

Antipsychotics

• Antipsychotics – Older medications that effectively reduce symptoms of psychosis but can have severe side effects and do not control mood swings (some brands include: Thorazin, Mellaril, Haldol and Prolixin.)

• Atypical Antipsychotics – Very effective in controlling psychosis and mood swings (brands include: Abilify, Zyprexa, Theraciule, Geodan and Clozoril).

Psychosis and schizophrenia are serious conditions that cause people to experience visual and auditory hallucinations and delusions. The side effects of some antipyschotics can be very serious, but schizophrenic patients need to take them long term in order to function within society. The two most serious types of side effects, although rare, include: (1) extraperonial symptoms such as rigidity, stiffness, tremors and tardive dyskinesia, which is uncontrollable movement of the mouth, arms and other body parts, and (2) metabolic disorders such as diabetes, high cholesterol and weight gain. Therefore, Dr. Zawawi warns that anyone taking antipsychotics have regular blood sugar, lipid and liver function tests, as well as family history screening and close supervision. Zawawi stresses that doctors are very careful about putting children on these medications and try to use antipsychotics for as short a time period as possible.

Psychostimulants

Psychostimulants are used in the treatment of Attention Deficit Disorder (ADD) and Attention Deficit Hyperactivity Disorder (ADHD) and have been the standard for many years. Zawawi explains that these medications are not addictive and can be used into adulthood to help patients focus and control impulsivity. Although classified as stimulants, these medications (including Ritalin, Concerta and Adderal) have a calming effect on patients who suffer from ADD/ADHD. Side effects may include sleep problems and weight loss, but psychostimulants help children perform better in school, engage in less impulsive behavior, focus on tasks, have more positive social experiences and generally stay out of trouble. Zawawi says that dosage and symptoms should be closely monitored and appropriately adjusted.

Anxiolytics

Many children suffer from extreme anxiety and school phobia, which can incapacitate them socially and academically. Medications that treat anxiety are used short term for acute panic attacks because they can be addictive. Anxiety disorders are more frequently treated with SSRIs and therapy, but anxiolytics such as Xanax, Librium, Atavan and Valium can help children through especially difficult periods. Zawawi warns that use of these medications must be closely monitored and carefully tapered off in terms of dosage to prevent withdrawal symptoms.

Communication

Dr. Zawawi stresses that parents must communicate with all of the physicians who treat their children regarding prescription and over-the-counter (OTC) medications. “Parents think that they are bothering their doctor with calls to see if it is safe to give decongestants or cough syrup or even pain and fever relievers to their children, but, believe me, we would rather answer your question beforehand than have to treat serious side effects after the fact,” he says. Combining psychotropic medications with others medicines can cause serious and even life-threatening reactions. “Be sure to tell your family physician about any psychotropic medications your child is taking and encourage them to contact the psychiatrist if there are any questions,” Zawawi says. Many psychiatrists monitor a child’s psychotropic medications for a few months and then turn administration over to the family physician, who is more familiar with the child’s history.

In general, antibiotics and asthma medications are safe when taken in conjunction with psychotropics, Zawawi explains, but it is still important to report all new prescriptions to all of your child’s doctors. Steroids and birth control pills can cause serious medication interactions with some psychotropics, as can fever reducers and decongestants.

Many parents do not realize that herbal and natural supplements can cause severe interactions with psychotropics as well. Dr. Zawawi tells parents that he respects their decisions if they want to try the natural route to treat their children, but herbals should not be taken in combination with any of the psychotropics. Also, parents should not administer larger doses than suggested by the manufacturer of natural or herbal remedies to their children. The adage, “if a little’s good, a lot’s much better” does not apply to natural or herbal supplements.

When it comes to alcohol and street drugs, Zawawi is very clear with his patients. He tells them if they combine alcohol and street drugs with their prescribed medications, they can suffer extreme sedation, excessive irritability, seizures or comas. It can truly be a lethal combination.

School

It can be difficult to make a decision to inform teachers, counselors and school nurses that a child is taking psychotropic medications. There are several points to keep in mind:

• Most schools do not allow children to carry and take medications of any kind in school. If your child needs mid-day administration, this has to be done by the school nurse, and the medications must be kept under lock and key in the nurse’s office.

• Teachers often spend more waking hours with your child than you do. If they know what your child is taking and the possible side effects or reactions, they can watch for anything out of the ordinary and report to you and the school nurse.

• Investigate confidentiality issues in your school system to increase your comfort level. Having an illness does not mean that your child will be “labeled” or suffer discrimination of any kind. There are laws that protect against this.

• Teachers can make adaptations to accommodate your child’s condition, including reduced homework, tutoring, modified tests, frequent visits to the nurse or rest room, the need to eat more frequently, rest periods in the nurse’s office if overly tired, reduced physical activity, not going outside, etc.

• Often, teachers or school counselors were the first to pick up on your child’s condition and referred him or her for an evaluation in the first place. They are trained to recognize possible problems.

• Teachers can arrange for your child to have a quiet place to go during over-stimulating activities, gym or even lunchtime.

• Your child may be more comfortable knowing that the teacher, nurse or counselor understands what he or she is going through and is approachable if the child does not feel well.

• Teachers can “run interference” if your child is struggling with a social or academic issue and make the situation less stressful.

• Your child may be eligible for placement in a smaller class that better meets his or her needs on a short- or long-term basis.

Involvement

Dr. Zawawi stresses the importance of parents being as involved as possible in their children’s treatment, medication, school life and healing. Acknowledging that parents are very busy and often do not have a great deal of time to spend with their children, he says that, at the very least, parents must:

• Monitor and administer their children’s medications

• Communicate regularly with all professionals involved in their children’s treatment

• Spend time with their children to observe and discuss how they are feeling, progressing, regressing, reacting to medication and getting along in school and socially