Caring for a Child with Behavioral Problems

My child recently has begun exhibiting aggressive behaviors that I find extremely upsetting. What can I do?
Some people have found that the aggressive behaviors exhibited by kids with FXS are often a cry for help -- a way to get out of a situation in which they feel overwhelmed. Kids know that by exhibiting that behavior, they'll be given a time out or separated from other people. So it is important to keep a written record of exactly what was happening when each aggressive behavior ensued. Then you can look at see if there are any patterns in the situations that led to that behavior and avoid them in the future.

Some emotional states that have been found to lead to aggression are:

• Anxiety
• Fear
• Agitation
• Confusion.

Once the triggers are identified, then attempting to intervene before the behavior occurs -- by teaching coping skills -- can often reduce the aggressive episodes. Intervening soon enough to prevent a repetition of the behavior is important, as you don't want the aggressive behavior to become routine. In addition to intervening to prevent a problem, medication can also help to reduce aggression.

What kinds of interventions have helped to reduce aggressive behavior in kids with FXS?

The following interventions have helped to reduce aggressive behavior:

• Seating the child near an exit
• Encouraging frequent breaks and building in down or calming time
• Scheduling activities that release stress and energy
• Acting out consequences to certain behaviors
• Reducing noise and sounds
• Limiting classroom size
• Structuring the environment with a predictable sequence of events
• Using signals and visual cues to warn of transitions
• Avoiding crowds
• Using natural lighting and avoiding florescent lights

I don't know how to handle my son's behavioral problems. While he can be sweet and friendly, he can also be impulsive, distractable and hyperactive. Do you have any suggestions?

Those are typical FXS characteristics. In fact, 80 to 90 percent of boys with FXS also have ADHD. Many have low frustration levels. Here are some suggestions:

• Come up with a behavioral plan that includes calming techniques and a modification of your child's environment to remove triggers.
• Create very concrete plans that have relevant cues and rewards.
• Use time-outs to punish unacceptable behavior. Time-outs should be short -- while one minute per year of age works for other kids, for kids with FXS whose attention span is often shorter, a shorter time-out would be recommended.
• When a child does something wrong, such as bite another child, a helpful response is to be very brief, and say: "No biting; time out." Then, wherever you are with the child, implement the time-out immediately, turning the child away from others and blocking the child's exit. Don't pay attention to the child during this time, as your lack of attention is the main punishment. If your child tries to get away, just repeat the phrase: "No biting, time out."

How can I facilitate my child's transition to public school, since he doesn't handle transitions well?

Transitions have to be planned carefully for those kids with FSX who don't like changes. 

• One helpful option is to place pictures of the schedule for the day on a board, or on a card.
• Changes, such as an assembly, can be written out or pictured and inserted in the proper sequence. 
• If you know that one of the activities will be disturbing to your child, see if it can be followed up with a calming activity. An example would be a loud assembly, which would disturb your child, followed by time on a beanbag chair, or another activity that your child finds soothing.

When my child goes to school, are there things that can be done to foster success?

Interventions that work for children with ADHD can also help those with FXS. These include:

• Seating the child near the teacher and far from distractions
• Allowing the child to use a private work area at times
• Giving your child brief tasks
• Offering visual cues for sequences of events
• Implementing active interactive lessons, in which your child doesn't need to just sit still and listen. 

I would like to take my child to do something outside of our home -- whether church, a restaurant or a film. But he has been so disruptive in the past that I am hesitant to try again. Do you have any suggestions?

Many children with FXS benefit from medication for ADHD, anxiety, depression, or aggressive behaviors. In addition, one solution is to help your child to anticipate the situation:

• Go over the sequence of what will happen, how many people will be there, what the room will look like, how long he will have to sit still, what will happen if he needs to get up.
• If you will be going to a restaurant, bring home a menu so you child can anticipate the options and what he would want to order.
• If you will be going to church or a film, try sitting in front to see if it helps your child pay attention. If that doesn't work, try sitting in the back to enable an easier escape if your child can't sit still.

What kinds of behavioral challenges should we expect?

It is complicated to figure out what is causing symptoms that seem like behavioral problems.

• Sometimes kids with Down syndrome have trouble hearing or comprehending. When they fail to follow directions, it may be due to this rather than intentional disobedience.
• Frustration over an inability to comprehend something may cause a child to become disruptive. Try to identify the trigger so that you can decide how best to intervene.
• When assessing whether behavior is appropriate, try to figure out a child's developmental age. Chronologically older kids may have temper tantrums that are actually appropriate for their developmental age.

Behavior that looks like ADD and an inability to concentrate might instead be the result of:

• Hearing problems
• Vision problems
• Thyroid problems
• Sleep disorders
• Gastrointestinal problems
• Anxiety over inability to keep up
• Frustration over inability to comprehend material that is being taught either at too high a level or in a style that your child cannot process
• Frustration over inability to make oneself understood due to communication limitations.

How should I respond to inappropriate behavior?

Here are two starting points:

• Have your child's hearing checked first to rule that out.
• Have the doctor check for other medical issues, such as sleep problems, which can then cause behavioral ones.

Since we learned my son had epilepsy, his behavior has changed and he has become angry and uncooperative. Do you have any suggestions?

A significant percentage of boys who have epilepsy also develop behavior problems. It is possible that the problems are a result of anger and frustration over the epilepsy, but whatever the cause, the inappropriate behavior must be dealt with.

• Try to reward your child for doing positive things and see if that helps minimize the negative behaviors.
• Don't let your child get away with unacceptable behavior just because he has epilepsy.

My child resists taking his epilepsy medication and trying to get him to take it is a daily trauma. What can I do?

Some children strongly dislike taking any medication. Plus, some kids feel that if they don't take the medication, then that means they don't have a problem -- a form of denial.

• Try reasoning with your child. Most kids are very motivated to not have seizures at school, and will take their medication as a way to prevent that.
• Try to incorporate taking the medication into normal family routines so that it becomes an integral part of the day.
• Find out what to do if your child misses a dose of the medication due to a change in routine. Is it okay to take it several hours later, or should he wait till the next scheduled time?
• Be aware of possible side effects so that you will be able to alert the doctor as soon as possible. And keep a written record of any side effects that do occur, the time of day and under what circumstances.
• Discuss with your child's doctor what to do in case your child has a fever, which for some children can trigger seizures.
• Ask your child's doctor what to do if your child has a stomach virus and can't keep anything down.

We thought my child had an irritable personality and difficulty concentrating, but now that he has been on the gluten-free diet for six months, those characteristics have all disappeared. Is it possible that they were symptoms of celiac disease?

Yes, it is possible, and many other parents report the same pattern of symptoms and changes. Behavioral changes, such as irritability and inability to concentrate, are frequently noticed in undiagnosed children. Undiagnosed adults often report problems with short-term memory and concentration. For many adults, however, these problems persist, despite strictly adhering to the gluten free-diet over a long period of time.

How can I handle behavior problems in my child who has autism?

• Creating a daily schedule that your child can count on will be helpful. Have regular times for therapy, school, meals and bedtime. If you must change the schedule, alert your child to this change in advance, so that he or she will be able to adjust.
• Motivation is powerful. Rewarding good behavior can reinforce it. In order to effectively use motivation to change behavior, the appropriate reward has to be constantly varied, analyzed, and adjusted.  Praise every new skill, no matter how small it may be.
• Carve out a safe space in which your child can relax, and feel secure. Visual cues that your child can identify will help, such as colored tape marking areas that are off limits. If your child has tantrums or injures himself, be sure to safety proof your house.
• Find respite care. Everyone needs a break and you deserve one. Families who have children with autism and utilize respite care report less stress than those who don't. Due to the additional care needed by children with autism, respite care is considered a basic need and will help preserve family stability. You can search for a special needs caregiver on Care.com.

How can I handle being out in public with my child who has autism?

Parents of children who have autism learn quickly that public outings need to be planned for and that the child has to be prepared for what to expect, step by step. Preparing your child can turn a hellish experience into a manageable one. Nevertheless, parents need to be prepared for disapproval from members of the public who don't understand.

 

Why do children with severe autism exhibit odd, repetitive behavior?

Some people believe that children who bang their heads repeatedly or continually move their body around do not have a sense of their body and that these movements are an attempt to experience their body. Those who constantly cry or scream may do so because they are unable to integrate the sensory input around them and are trying to screen it out with those noises. Some believe that it is because of difficulty processing stimuli from outside themselves that they try to close themselves to the outside world. Many of the treatments for autism are attempts to counteract this difficulty and to connect them with the outside world. It is crucial to deal with these behaviors as a young age and it is very possible to reduce or eliminate them.  This reduction can have a major impact on family life.

 

How will I know how to find the best treatment for my child?

Each person on the autism spectrum will require a somewhat different intervention. A particular program or combination of programs may work for one person and not another. A particular program may work for one period of time and not another. Often, the effectiveness of the treatment depends on the skill of the therapist, as well as her/his experience and style. You will have to objectively evaluate each intervention and switch to another if one isn't achieving the desired goals.

Autism Speaks recommends that you:

• Observe the therapy in action
• Talk to experienced parents
• Make sure you thoroughly understand all that is involved before beginning a therapy
• Ask your pediatrician, developmental pediatrician and/or social worker who specializes in autism treatment for advice and help prioritizing therapies based on your child's comprehensive evaluation
• Check to see if multiple therapies can be incorporated into the same learning format, as many children with autism have related problems and can benefit from receiving therapies for several issues.

The National Institute of Mental Health (NIMH) recommends that you find treatment that:

• Offers a predictable schedule
• Builds on your child's strengths
• Teaches things as a series of simple steps
• Engages your child's attention through highly structured activities
• Reinforces good behavior
• Involves the parents.

NIMH also recommends that in developing a treatment plan parents:

• Consult with trusted advisors who are specialists in the area.
• Target the child's main weaknesses
• Take advantage of the child's strengths
• Incorporate things the child enjoys
• Address the most important skills your child lacks
• Work to reduce the behaviors that cause the most problems

NIMH further suggests that you ask:

• Has the program been successful with other children? What percent of children who tried it found that it helped?
• How many children who tried this treatment then went on to regular school? How have they done?
• Are staff members trained and experienced at working with children and adolescents with autism?
• Is there a predictable daily schedule and routine?
• Will my child receive individual attention? If so, how much?
• How will progress be measured? Will any one observe and record my child's behavior?
• Has the environment been designed to reduce distractions?
• Will I be taught how to continue the therapy at home?
• How much will the treatment cost, where will it be located, and how much time will it take?
• What is the rationale for how activities are planned and organized?

The Autism Society of America recommends remembering that your child will need a functional curriculum, vocational life, and social skills, and that you ask yourself:

• Will the treatment cause harm to my child?
• If the treatment fails, how will it affect my child and family?
• Has the program been scientifically validated?
• Are there ways to assess progress?
• Can the treatment be integrated into my child's current  program?

What are some treatments for autism?

Treatments for autism include Applied Behavior Analysis ABA, Floortime, Gluten Free, Casein Free Diet, occupational therapy, PECS, Relationship Development Intervention, SCERTS, Sensory Integration Therapy, Speech therapy, TEACCH, and verbal behavior intervention.