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Tools for Parents of Children with Disabilities and Special Needs

LIFELONG NORMALIZATION

Contents:

1. What is normalization?
2. Negative consequences of the lack of normalization for children with special needs
3. Negative consequences of the lack of normalization on parents and siblings of children with special needs
4. Common parental beliefs that prevent normalization of children with special needs
5. What parents need to help their children reach their highest level of normalization
6. A Practical Guide for a Lifelong Normalization Program

• Birth to Preschool
• Elementary
• Secondary

• Adulthood

7. Action Steps to Implement a Lifelong Normalization Program

A. What is normalization?

Parents of children with special needs are too willing to make accommodations for their children's disabilities and with the result that their children often suffer from a "hidden disability" of low self-esteem, or over-dependency or being spoiled with a sense of "entitlement." What is needed is to treat a child with special needs with normalization. Normalization of a child with special needs means:

• expecting behavior as normal as possible from birth on.
• using discipline and child management techniques as they would for any other child.
• exposing the child to other children and encouraging the child to socialize as normally as possible from infancy on.
• treating the child as any other child would be treated, allowing for the development of the child's self-esteem.
• exposing the child to life and all the activities of the world in the same way you would any other child.
• exposing the child to an inclusive school environment where the child would be challenged to develop as normal a language, behavior pattern, and personality as possible.
• discouraging handicapped behavioral patterns.
• encouraging the child to participate in typical and able-bodied community activities and programs as much as possible.
• making the child accept personal responsibility for own actions.
• encouraging the child to become as self-sufficient as possible.
• encouraging the child to reach for the highest level of functioning possible.
• helping the child to recognize personal deficiencies, but not to use them as an excuse for lack of progress.
• considering the child's mental health as important as physical and intellectual development.
• considering the child's siblings' and parents' well-being, and physical, and emotional health in planning treatment, services and programs for the child.
• keeping in mind the child's future in planning for preschool, elementary, and secondary school.
• working as a unit toward self-sufficiency and autonomy for the child's adult years.

B. Negative consequences of the lack of normalization for children with disabilities

Parents run the risk of the following consequences for their children with disabilities, if they do not consistently implement a program of normalization in their children's lives.

The negative consequences of lack of normalization are that the children with special needs then:

• become overly dependent on the parents to meet their needs.
• learn only "handicapped'' behavior patterns and begin to believe and act as handicapped.
• actually lose potential and complacency sets in when there is no challenge.
• become a behavioral management problem at home, at school, or in the community.
• refuse to ''grow up'' or to take on responsibility for themselves.
• "hook'' their parents into enabling, rescuing, and "doing for'' them.
• develop unrealistic assessment of their abilities; believing they can do less than what they are capable of doing.
• develop inappropriate and insufficient language and social skills for participation in the ''normal'' world.
• have an unrealistic understanding of their disabilities and only know that they are ''different'' from others and as such must become isolated from them.
• become dependent on parents and siblings for lifelong care.

C. Negative consequences of the lack of normalization on parents and siblings of children with special needs are:

• The parents become susceptible to being the children's enablers and rescuers and they begin to ''do for" the children with special needs and not expecting them to do for themselves.
• The parents burn themselves out in the ''doing for'' process.
• The parents fail to prod or push the children with special needs to reach their fullest potential.
• The parents become guilt ridden as their children achieve little in the way of academic or material success.
• The parents stifle any negative emotional responses, resulting in chronic anger, hostility, and resentment.
• The siblings feel ignored and take on a variety of maladaptive roles as the family ''does for" the children with the disability.
• The siblings become emotionally hooked on ''doing for" these children, while feeling guilt for being "normal.''
• The siblings are forced to grow up faster than normal, becoming compulsive, over-responsible, and high achievers while at the same time they believe they can never be ''good enough'' to make their parents or family happy.
• The siblings stifle all feelings so as not to burden the parents and family, resulting in depression or obsessive and compulsive ways to medicate their feelings.
• The siblings ''act out'' in response to the sense of being neglected or forgotten as the target children get the bulk of the parental and family attention.

D. Common parental beliefs that prevent normalization of children with special needs

Parents of children with special needs run the risk of becoming very irrational in response to these children. This becomes very important if the parents have not successfully handled and accepted the diagnosis given to their children. This also becomes very important if the parents have not successfully grieved the losses involved in having children with special needs. Lastly these parents are more prone to becoming irrational in their approach to their children with special needs if they have not bonded in a healthy way with them. Some of the irrational beliefs which keep parents from implementing a healthy normalization program with their children with special needs are:

• I must never deny my child anything because my child's disability denies my child a normal life.
• I could never push my child to do more because I feel so sorry for my child.
• My child with a disability has to learn to accept that this child will always be dependent on others to do things for this child.
• I must dedicate my entire life to this child and I must never consider my needs or feelings as important.
• Kids with disabilities or problems should be treated ''special.''
• Kids with disabilities or problems should not be pushed too hard, after all even though they have problems, they are still kids.
• Other kids can be so mean. Why place my child in such an environment, running the risk of something being said?
• Why do little kids under the age of three need to be pushed into preschools just because they have a disability?
• I could never spank my child whose has the disability. I'd feel so guilty.
• I can't discipline my child for climbing on the furniture, when my child was younger I never expected to walking let alone climbing.
• It's easy for professionals to suggest what we should do with our kids. They don't know what it feels like to be the parent of a child with a disability.
• Kids under the age of five need their mothers; mothers alone are sufficient for the kids' early development.
• Parents don't need to address their emotional needs when they have a child with special needs.
• I could never get angry over what disability my child has or what my child will face in life.
• It is cruel to put kids like mine into a ''normal'' classroom, in a regular school, or on a regular bus.
• The schools know what is best for my child and I defer all my opinions to them.
• My child's brothers and sisters will have to be the caretakers after we die.
• I will never put my child in a group home.
• I will never use respite care for babysitting for my children.
• I would rather die than let my children suffer hardships in their lives.
• I must take care of my children all of my life, no matter how it affects me physically or emotionally.

All of the above beliefs are irrational. If parents pursue their lives on these beliefs they will end up having children who are under utilizing their potential and most importantly the parents themselves will be running the risk of ruining both their physical and emotional health.

E. What parents need to help their children reach their highest level of normalization

To be successful in implementing a normalization program for their children with special needs parents need to develop the following strategies:

• Accept the reality of their children's disability and a realistic picture of the limitations of the disability.
• Learn to discipline the children as if they were ''normal.''
• Require their children to accept the natural and logical consequences for behaviors.
• Set limits and anticipations for their children which respect the rights and needs of the parents and siblings.
• Set limits as to how much information and/or suggestions will be accepted from professionals about what is best for their children.
• Encourage their children to be responsible for personal daily living activities.
• Be an advocate for their children with professionals and schools, placing the children in as ''normal'' and "inclusive" a setting as possible.
• Pay special attention to the siblings, assuring them that they are loved unconditionally for who they are.
• Ensure a balance and healthy focus to their own lives by reserving time for themselves, spouses, siblings, family and friends, along with time for their children with special needs.
• Let the target children and siblings experience failure and discouragement; encouraging them to accept this as a reality in life.
• Give family members permission to express and listen to each other's feelings.
• Encourage the target children's siblings to be open and free in communicating their feelings.

F. A Practical Guide for a Lifelong Normalization Program

• Birth to Preschool
• Elementary
• Secondary

• Adulthood

What follows is a list of 100 behavior traits of children with special needs, their siblings and parents. The behaviors are broken into four stages: (1) birth to preschool, O to 5 years; (2) elementary, 6 to 13 years; (3) secondary, 14 to 21 years; (4) adulthood, 21 years and older. For each problematic behavior the ideal normalization solution is presented.

To assist in identifying the correct course of action, it is important to consider the nine behavioral characteristic patterns of low self-esteem which come from living in a family which does not encourage lifelong normalization. The nine behavioral patterns which are unproductive and keep a lifelong normalization program from taking effect are described in Laying the Foundation by James J. Messina, Ph.D. (1997, Tampa, FL: Advanced Development Systems). They are:

• Looking good: an over-responsible pattern of high achievement and denial of family problems.

• Acting-out: an irresponsible pattern of low achievement and much trouble making that diverts attention from the troubles in the family.

• Pulling-in: the withdrawn behavioral pattern of a loner who resorts to a low profile, holding in emotions to survive in the high-stress family.

• Entertaining: a diversionary pattern of drawing attention away by clowning, amusing, hyperactivity, or ill health.

• Troubled person: an irresponsible pattern of problem behavior often the cause and focus of great stress in the family.

• Enabling: an over-responsible pattern of protecting, assisting, and cajoling the troubled person to reduce stress in the family.

• Rescuing: an over-responsible pattern of helping others in the family to reduce the tension, anxiety, hurt, and pain.

• People pleasing: an over-responsible, approval-seeking pattern characterized by highly sociable behavior and immobilized decision making.

• Nonfeeling: a none emotive, stoic pattern of denial of problems and feelings that assists an individual in surviving the high-stress family.

Children less than 5 years of age frequently do not display these patterns, but are prone to fear of pain, power struggles, over-bonding, separation anxiety, fear of strangers, manipulation, and testing limits.

When reading each of the 100 items consider these questions prior to reading the solutions given after each item:

• Which one of the nine behavioral patterns of dysfunctional families is being displayed?
• What is the reason for the behavior?
• What can be done to alter or improve this behavior pattern?

up

Birth to Preschool

1. Child cries when left alone with a babysitter or teacher.

• Over-bonding or separation anxiety of the child.

This is a normal pattern of behavior. It is best to ignore the crying. Be cheerful, brisk, and leave the child to deal with the separation on his own.

2. Child cries in doctors' offices and/or clinics.

• Fear of pain or fear of strangers of the child.

This is a normal pattern of behavior . It is best to ignore the crying and reassure the child that "this is a necessary event in the child's life.''

3. Child cries and becomes hysterical as a hospital in-patient.

• Fear of strange places, fear of pain, separation anxiety of the child.

This is a normal pattern of behavior. It is best to ignore the crying and to assure the child by ''rooming'' in the hospital and reassuring during medical treatments that "this is a necessary activity in order to restore the child to full health.''

4. Child cries all night long in bed; possibly crawls out of bed to get into parents' bed.

• Night fears, manipulation, or power struggle of the child.

It is best to ignore the crying, not to speak to the child, and to consistently place the child back into the child's own bed.

5. Child refuses to go to bed at night alone.

• Night fears, manipulation, or power struggle of the child.

It is best to ignore the crying and to inform the child prior to bedtime that you will not respond to the child's tears or requests to sleep in someone else's room. If tears or requests come, ignore them and physically place the child back into the child's own bed. Do this all night the first time and then every night until eventually it is no longer necessary. Be tough and hang in there.

6. Child refuses to go to bed with the lights off.

• Night fears, manipulation, or power struggle of the child.

It is best to ignore the crying and to phase out lighting. Once you can sleep the whole night through, you will be grateful you did this right away. During week one, use all lights. Week two, leave on major ceiling fixture. Week three, leave on table lamp near bed. Week four, leave on small night light, plugged into wall electric socket. Week five and onward, remove all night lights in room, and keep a small night light in the hall and/or bathroom near the child's room. To assist the child to accept this process have the child select the night light to be used and to choose what place in the house the light is to be put.

7. Child refuses to eat at mealtime.

• Tactile sensitivity, fear of choking, manipulation, displeasing taste, or power struggle of the child.

Ascertain if there is a physiological problem by consulting a speech, physical, or occupational therapist. If not a physical problem, ignore the refusal, the crying, and the behavior. Announce prior to meals ''this is the food you will be given at this meal. You will be given no other food at this meal or for a snack later.'' Then follow through. Give the child no food until the next meal. It may hurt you, but you need to be tough.

8. Child refuses to comply with parents' requests to stop playing with the TV, stereo, stove, etc.

• Exploration of environment, testing limits, or power struggle of the child.

Even if the behavior is cute and one you have waited for a long time to see, you need to intervene when it gets out of hand. Create a ''time-out'' chair in a corner with no distractions for your child. Use the ''time-out'' chair for ten minutes each time he does not comply with your request. Do not yell, rant, or rave when you put the child into the time-out chair; be calm but firm.

9. Child picks unmercifully on another child in the family.

• Acting-out behavior, sibling rivalry, jealousy, need for attention, or resentment of the child.

Recognize this as a call for help by the child. Determine if the child is not getting enough appropriate, healthy attention. Set up ''alone times'' for the child with the parent for positive attention giving. Do not yell or scream at child when the child is picking on the sibling. Use ''time out'' chair or physically remove the child from the sibling.

10. Child pouts and sulks when spoken to in a harsh or demanding manner.

• Pulling-in or nonfeeling behavior of the child.

Encourage the child to use ''I feel . . . '' statements as to how the child feels when the child is being reprimanded, scolded, or disciplined. Practice alternative ways to give verbal reprimands in the future to reduce the withdrawn behavior of the child.

11. Parent cries, feeling guilty when leaving child with babysitter or teacher.

• Looking-good, enabling, or rescuing behavior of parent.

Be cheerful, brisk, tough, and leave the child with the teachers or aides immediately. Only if it becomes unbearable for the teacher or aides should you use a ''phasing out'' of the parent process. In phasing out, the parent stays: day one, all day; day two, one-half day; day three, one-quarter day; day four, one-eighth day; day five, one-sixteenth day; day six, one-thirty-second day; from day seven onward, no more than two minutes to kiss, hug, and say: ''Good-bye, I'll see you later.''

12. Parent feels sorry and cuddles child who cries in doctors' offices.

• Enabling, or rescuing behavior of the parent.

Be present in examining room and reassure child that the medical procedures are necessary and beneficial to lifelong health. Be kind but firm.

13. Parent holds and cuddles child whenever child is a hospital in-patient.

• Enabling, rescuing, pulling-in behavior of the parent.

Be present in hospital room and treatment sites and ''room in,'' but be tough and inform child that hospital procedures and activities are necessary and beneficial to lifelong health.

14. Parents allow the crying child to get into bed with them.

• Enabling, rescuing, pulling-in, or people-pleasing behavior of the parent to solve problem and avoid guilt.

It is best to inform child in advance of what the consequence of this action will be, e.g., being physically placed back in own bed. If child does get into parents' bed, ignore crying. Silently put child back into own bed. You may need to do this many, many times initially. If you are consistent, however, you will reap the benefits of a full night's sleep; the child will learn independent behaviors.

15. Parents spend one to three hours each night soothing and cajoling the child to go to sleep.

• Looking-good, enabling, rescuing, or people-pleasing behavior of the parent to reassure child, solve problem, and avoid guilt.

It is best to limit the bedtime ritual to reading a short story, ten minutes in length, followed by a kiss and hug with lights out. If it is longer than ten minutes, phase out bedtime ritual by spending half of the usual time each night until you get it down to ten minutes. After the kiss, hug, and lights out, do not speak to the child again. Inform the child that you will speak for the ten minutes allotted, after that you will be silent. Be tough and stick to your guns; be consistent.

16. Parent gives in and leaves lights on for the child who cries for them to be left on.

• Enabling or rescuing behavior of the parent to avoid guilt.

Use the phasing-out process described in item 6. Be cheerful, consistent, firm, and tough as you extinguish the lights. Do not make excuses, apologize, or succumb to bribes to keep the lights on.

17. Parents let child sleep in the parental bed all night.

• Enabling, rescuing, acting-out, troubled-person, nonfeeling, or pulling-in behavior of the parent.

This is destructive to parental intimacy and the marital relationship. This can create over-bonding and dependency of the child on a parent. Troubled adults may encourage this to create a wedge between self and the spouse. This is emotionally disruptive to the parents and to the children. Use the process described in Item 7 to eliminate this behavior.

18. Parents allow the child to get away with ignoring their requests to alter unacceptable behavior.

• Enabling, rescuing, or acting-out behavior of the parents.

This discourages the development of a sense of personal responsibility on the part of the child. It tends to frustrate parents to the point of anger and acting out. Establish a natural or logical consequence for the child to experience if the child does not comply with a request. ''Time out'' as mentioned in item 8 is an easy, logical consequence for pre-schoolers to understand. It is efficient and effective if used consistently.

19. Parent punishes the child for consistently picking on a sibling.

• Looking-good, acting-out, enabling, or rescuing behavior of the parent.

The offending child gets the message that the parent is the''defender''of the sibling and possibly holds the "picked on'' sibling in higher esteem than the ''offending'' child. It is sound judgement to look at the child's behavior to determine what the ''goal'' of the behavior is, and implement a remedial program to address the actual goal. In many cases the goal is attention, personal reinforcement, and understanding from the parents and siblings. Investigate before you act.

20. Parent feels guilty when the child pouts or sulks after having been reprimanded for inappropriate behavior.

• People-pleasing, looking-good, pulling-in, or troubled-person behavior of the parent.

The child is usually in control of the situation and knows what ''buttons'' to push to get own way, to get the parent in a ''weakened'' posture. It is imperative that the parent work through guilt feelings about being tough; be consistent with the child's accepting personal responsibility for his own behavior. If the child has a disability, it is essential that the parent work out acceptance of the child's developmental disability and the need to discipline the child as normally as possible in order to ensure the child will become a self-sufficient adult.

21. Parent ignores a child who does not fulfill a fantasy anticipation.

• Acting-out, pulling-in, nonfeeling, or troubled-person behavior of the parent.

This is rejection, lack of approval, and denial of a child because the child has not met a certain standard of behavior or quality of performance. The parent needs to resolve the sorrow over the loss of such anticipations and come to accept the child as the child is. To rectify this problem, parents need to work out their feelings of grief and anger; to let go of perfectionism. Many parents have a problem adjusting to the notion that their children are not ''perfect.'' This is irrational; parents need to accept their children the way they are.

22. Parent resorts to increased use of alcohol, drugs, food, or extramarital affairs to handle the emotional aftermath of having a child with a disability.

• Troubled-person, acting-out or pulling-in behavior of the parent.

Rather than face the pressures head on, the parent uses alcohol, food, drugs or extramarital affairs to medicate the stress. This is an unhealthy pattern that needs remediation, possibly with professional treatment if it becomes habitual.

23. Parent refuses or is incapable of expressing feelings about the problems resulting from the child's disability.

• Pulling-in or nonfeeling behavior of the parent.

The parent is either incapable of expressing self, or fears that feelings once let out will become uncontrollable. This parent is in need of support from spouse, family, and friends to gain the security to tap into the parent's emotional responses. If the feelings are kept bottled up, chronic depression and low grade anxiety may result.

24. Parent finds it impossible to overcome depression, despair, and fear over the reality of the child's lifelong problem.

• Looking-good, acting-out, people-pleasing, or troubled-person behavior of the parent.

Pressure is imposed on the parent, either externally or internally, to be ''strong" and to accept the situation bravely. This directive is inhuman and unnatural. It is better that a parent not contain the emotional grief response over the news of the disability. Once the major portion of the emotional release is spent, acceptance of the reality and ''going on from here'' can occur.

25. Parent thrashes out in anger at spouse, doctors, professionals, in-laws, relatives, other children, the target child, and God over the reality of the child's lifelong disability.

• Acting-out or troubled-person behavior of the parent.

There has been a lack of healthy resolution to the parent's emotional response to grief. This parent, caught up in unresolved grief over the news and reality needs to be given a chance to have a complete emotional catharsis. A release over this reality might make it possible to contain the anger and hostility. Underlying feelings behind this anger include feeling ignored, not cared for, and being misunderstood.

26. Parent blames self for the target child's problem.

• Looking-good, people-pleasing , and troubled-person behavior of the parent.

This parent is already an ''over-responsible'' individual who seeks to please others and do the best for others. The parent is prone to overwhelming guilt over the child's problems. The guilt is almost always unfounded, unrealistic, and irrational. This person needs assistance to rethink, re-frame, and look anew at the reality of the causation for the developmental disability.

27. Parent focuses an inordinate amount of time, attention, and energy on target child to the exclusion of the siblings.

• Looking-good, rescuing, and enabling behavior of the parent.

Parents can get caught up in guilt, over-responsibility, and fear, being unable to ''let go'' of the need to single-handedly provide everything necessary to give the child an optimal head start. This is unrealistic and irrational. It sets up the target child as the family's problem. It sets up an uneven and unhealthy relationship between the target child and siblings. There is probably resentment, hostility, and anger experienced not only by the siblings but by the spouse. This pattern needs to be changed quickly.

28. Parent refuses to admit or accept that the child has problems needing immediate attention and intervention; refuses to utilize available services for the child.

• Looking-good, acting-out, pulling-in, or troubled-person behavior of the parent.

This is a ''classic denial'' pattern in which the parent is caught up in a blocked or unresolved grief process. The parent needs honest, open feedback, information, and support. The parent needs assistance to work through the blocked grief response and get needed services for the child. The parent needs to be reminded that it is the child who has the disability; the child deserves the best care and help he can get. The parent needs to be reminded that the problem is the child's and that the child is too young to seek help on the child's own. The parent does not have the disability, and it is important that parent not become possessive of the child's problem. This perspective helps the parent open up to getting the help that the child deserves and needs. If necessary a grandparent, relative, friend, or babysitter can be enlisted to insure the child is getting to the appropriate programs and services.

29. Parent intercedes for the child and performs tasks for the child which the child was struggling to perform on his own.

• Enabling, rescuing, people-pleasing, or looking-good behavior of the parent.

Due to guilt, irrational fears, or impatience parents often become so busy ''doing for'' the kids that the children learn a lesson early: ''If I act weak, incompetent, sickly, or incapable someone else will always do for me.'' This is a poor message to give children with disabilities. They need to become as self-sufficient as possible.

30. Parent is not conscientious in getting child to appropriate programs or therapy sessions.

• Acting-out or troubled-person behavior of the parent.

This is often due to pressure put on the parents' personal time, energy, and resources. Parents can become resentful, angry, and resistant to the demands placed on them to give their child an early start. They are unable to accept or comprehend the benefits of early intervention. They ignore the fact that it is the child who has the problem, that the child neither asked to be brought into this world nor asked for the specific disability. It is important for these parents to be given honest, open, and appropriate information and confrontation concerning the ''lifelong'' nature of a developmental disability and the need for parental support and sacrifice--not only when the child is a pre-schooler, but for the child's entire life. It is important for the parent to recognize that the parent is the ''expert on the child'' and is a necessary member of the child's intervention team.

up

Elementary

31. Child clings to parent.

• People-pleasing and looking good behavior of the child.

The elementary-age child who clings to a parent has been given a message since birth that ''it is OK to hold on to your parent who will do for you'' This creates over-dependency and over-bonding between the child and the parent, smothering the growth of self-sufficiency, autonomy, and independence in the child. This is especially unproductive for disabled children who need to be ''toughened up'' and face a lifelong effort to be self-sufficient. Parents of clinging school-age children need to modify this behavior rapidly by tapering what they do for the children and by letting the children know that more is going to be expected of them. Beginning at 7 to 10 years of age, children are able to identify right from wrong, can understand the notion of negative consequences, and are capable of taking on large amounts of personal responsibility.

32. Child acts out and creates trouble in classroom or at home.

• Acting-out behavior of the child.

The child probably is calling out for attention, even if it is negative attention. This cry for help must not be ignored. Analyze the message in the behavior. Ignore the bad behavior and reinforce the good behavior. Set up ''alone'' times with a positive focus for the child each day. Begin the process of ''catching the child being good,'' to reinforce and promote a reformed and healthy pattern of behavior on the part of the child. If necessary, seek professional help. This problem should not go unresolved for a prolonged period time. It is an unhealthy behavior pattern.

33. Child does not do schoolwork, homework on own.

• Acting-out behavior of the child.

Have the child evaluated to determine his ability to do the work on the child's own. If it is determined that the child is unable, get remedial assistance for the child. If the child is capable of doing the work, however, treat the problem as described in item 32.

34. Child keeps to self and stays in room.

• Pulling-in or nonfeeling behavior of the child.

The child may desire to lessen the emotional pressure on the family by keeping to self. It is important for the parents to set up a structured weekly family meeting to draw the child out. This will encourage the child to know that the child's feelings, input, and problems are welcome topics for discussion and family support. Do not, however, analyze, lecture, or blame the child for keeping her feelings in. This may make the child regress deeper into self, and withdraw more.

35. Child refuses to participate in therapy.

• Acting-out behavior of the child.

This reflects an irresponsible attitude on the part of the child. It also is reflective of the child's denial of the lifelong nature of the disability and the ongoing need for such intervention. A contingency program with logical or natural consequences can be developed. It is important for the parents to reflect supportive understanding of the need for such therapy. Blaming, punishing, or threatening children to participate in therapy only increases negative reaction.

36. Child refuses to take required medications.

• Acting-out behavior of the child.

This is irresponsible and ill-informed behavior. Threats, punishment, and blaming divert the attention from the real problem, giving negative attention and turning the child even more against the medication. This behavior also reflects the child's denial and lack of acceptance of the child's lifelong problem. The child may have never been made to carry the burden of his problem up to this point, so it seems natural to place the burden of the medications on the shoulders of the child's ''do for'' parents. The parents need to educate the child about health risks, lifelong disability, and the negative consequences of avoiding preventive measures, such as taking medicine. The child needs to see that the parent means business and cannot be guilt-led into further manipulation by the child. If the parent says: "You will get sick if you do not take your medications,'' and the child says ''I don't care,'' Is the parent ready to take the risk of not forcing the child to take the medicine, but forcing the child to experience the natural consequence? The child will learn the lesson that the child is responsible for the child's own health, now and in the future.

37. Child refuses appropriate toileting behavior, including changing diapers, wiping self, using toilet, catheterizing self, or cleaning hands and face.

• Acting-out behavior of the child.

This is irresponsible behavior and reflective of the denial of the lifelong disability. The actions in item 36 can be followed. If the grooming and toileting behavior is inadequately done, the child is a health risk. It is imperative to assist the child in accepting personal responsibility for this at an early age, allowing the child to see one's self as ultimately responsible for one's own life. Items 35, 36, and 37 describe behavior in which a child is calling out for help and attention to the fact that the child has not accepted the child's own disability and is in need of more listening and support as the child sorts out emotional responses to the grief of not being a ''normal'' person. This behavior tells parents that the child does not own the problem of the disability because the ''over-responsible'' parents are doing a good job of carrying the problem on their shoulders for the child. This behavior indicates that it is time for the parents to hand over the reality of the lifelong nature of the disability to the child.

38. Child refuses to dress self, feed self, or groom self; seeks parental assistance by crying, pouting, or moving slowly.

• Entertaining, people-pleasing or acting-out behavior of the child.

Children in the school-age years often are perceptive to the "unwritten message'' of ''do for'' parents who have a vested interest in infantilizing the child, in keeping the child a baby for a longer time. This usually gives the parent a purpose or focus, which results in a meaning, sense, and order to his life. The child pleases the parent by acting baby-like, even though the parent seems to disapprove with comments about how disabled, handicapped, immature, or irresponsible the child is. This is a parent-child game that needs to be changed immediately. Expect ''normal'' behavior from all children, no matter what their level of disability. You will be surprised at how they will rise to the occasion.

39. Child refuses to communicate feelings and reactions to problems.

• Pulling-in or nonfeeling behavior of the child.

The child is perceptive to the unwritten message of the parent: ''I have so many problems, worries, and concerns, please do not burden me with any more.'' This may be the case even if the parent is complaining openly that the child doesn't communicate. The parents must recognize that their verbalization, complaining, depressed, or troubled personalities could be the very barriers forcing the child deeper and deeper into his emotional self. It is important for the parent to admit that this is a problem before the child is encouraged to risk emotional self-revelation.

40. Child entertains, jokes around, or provides comic relief for family and/or peers.

• Entertaining or people-pleasing behavior of the child.

Because of the stress and emotional tension in the family, the child chooses to help relieve this tension and stress by such behavior. However, when this behavior is enacted in school, the community and at work it can become maladaptive. It can also divert the child from the life tasks required for future development. Parents need to recognize the goal of such behavior, assisting the child to tune into feelings and recognize that it is acceptable and appropriate to be serious, using problem-solving behavior when the need arises.

41. Child struggles to please parents by achievements in therapy and/or in school.

• Looking-good and people-pleasing behavior of the child.

Because the child has received the unspoken message that: "you are only worth something if you make progress in therapy or get good grades in school,'' the child becomes obsessed with achieving. This may have resulted from a behavioral approach of the parents in which rewards were used to elicit appropriate or good behavior from the child. The child then does everything for a reward. This message also implies to the child that love is given on a conditional basis, and the condition is visible progress or achievement. Obsessively seeking to achieve just to please others can lead the child to an over-responsible, compulsively driven way of life. This can lead to internal distress or burnout. It is important for the parents to assist the child in refocusing and re-setting priorities, to learn to relax, have fun, and enjoy playing. It is important to give the child the sense of unconditional love.

42. Child takes on a parenting role with the siblings in the family.

• Looking-good and people-pleasing behavior of the child.

To assist the parents, who the child perceives to be under a great deal of stress, the child takes on a leadership and parenting role with the other children in the family. There is the possibility (as in item 41) that the child can suffer in this over-responsible role. The child runs a risk of never being able to accept the authority of other adults. The child runs the risk of being burned-out on parenting for the future. Parents need to recognize the goal behind such behavior and encourage the child to reduce the ''little adult'' or ''little parent'' role so that the child can experience a complete childhood first. Parents need to be sure not to dump too much responsibility for other family members on any one child.

43. Child comforts and reassures parents when they are down or blue.

• Looking-good, people-pleasing, enabling, or rescuing behavior of the child.

The child takes on a "parenting role'' with the parents. The child becomes the advisor, counselor, and support system for the parent. This is unhealthy not only for the child but also for the parent. This is an over-responsible role that, like in Steps 41 and 42, can lead to burnout and distress for the child. Parents should maintain the natural boundary between the parent hierarchy and the child level in the family. If parents are isolated they should seek out a support group, social network, or adult family member to provide the proper level of support.

44. Child denies the existence of problems in the family.

• Looking-good behavior of the child. This is a classic denial role.

The child may sense that problems, stress, and tension, experienced in the family are family secrets not to be shared with anyone including the parents. Conducting weekly family meetings in which the problems, stress and tension is openly discussed and problem solved can change this perception. Giving the child a chance to ventilate feelings about family problems and having parent role models of healthy ventilation is another good way to rectify this behavior.

45. Siblings feel compassion, sympathy, ''sorry for'' the child with a disability and begin to ''do for'' the sibling who struggles to accomplish normal developmental tasks.

• Rescuing and enabling behavior of the siblings.

The siblings of children with developmental disabilities need to be given appropriate developmental training to understand the need to assist the target child in becoming self-sufficient. The solution in item 29 applies here as well. Siblings need to allow the target child to do things independently, no matter how slowly or inefficiently they are done.

46. Parents hand over all responsibility for child's education to the schools; medical needs to the doctors; therapy to the therapists; disciplining of the child to the child.

• Troubled-person behavior of the parents.

This is the total giving up and shirking of responsibility for the well-being of the child. Parents are the developmental experts, advocates, teachers, health-care providers, and role models for a child. If parents give up their rights, duties, and responsibility to discipline, direct, and educate the child, the child is at risk for a weakened, misdirected, and ill-informed upbringing. This will not prepare the child for self-sufficient, independent living, or self-responsible, self-direction into adulthood.

47. Parent becomes overly involved in work, career, higher education, or volunteer work.

• Troubled-person behavior of the parent.

This is the escaping, avoiding, denial, and ignoring of problems and responsibilities on the home front. There is a need for a healthy balance between meeting the needs of: the family, habilitation of the target child, marriage, personal growth, self-education, work, obligations, and responsibilities. The highlighting or over-emphasis of one of these aspects over another can be damaging and harmful to the others. This parent needs behavior intervention to see the damage being done by the imbalance of focus on areas outside of the home environment.

48. Parent steps in to mediate whenever a child has problems with peers or siblings.

• Rescuing behavior of the parent.

By this behavior the parent never allows the child to experience the natural consequences and natural working out of conflicts or problems on the child's own. The child for whom most intercessions are made becomes dependent on the parents and others to ''fight my battles for me.'' This does not assist the child to analyze self-behavior to determine which behavior patterns are maladaptive and unproductive in interactions with others. The child can become a social misfit or outcast because of such intervention. Encourage the child to handle these problems on the child's own and to learn more socially acceptable behavior for interacting with others.

49. Parent works hard at having the perfect child who excels in school, therapy, and other activities.

• Looking-good behavior of the parent.

The parent who forces the child to meet extremely unrealistic, overly ambitious, extraordinary anticipations, will not channel the child in a direction which is best for the child. Rather, the child will be directed to do only what is best for the parent. This can create such severe stress for the child that the child may only receive the message of ''not being good enough,'' leading to frustrations, anxiety, and failure. It can result in the child giving up, being unwilling to reach high goals. Parents examine the motives behind their prodding. Are the goals for the parent or are they honestly for the child's well-being? Goals realistically obtainable by the child that result in the child's reaching the child's own potential are best.

50. Parent rewards only major accomplishments of child in school, clubs, or outside activities.

• Looking-good behavior of the parent.

The parent is sending the unwritten message that the child's worth, esteem and self-concept are dependent on the child's level of performance. This conditional reinforcement, reward system, and model of love limits the child's belief in the child's own goodness, value, and worth as a person. Parents need to value their children beyond the mere accomplishments. Reward children just for being who they are.

51. Parent ignores the feelings of the child.

• Troubled-person, nonfeeling, or pulling-in behavior of the parent.

If the parent is not tuned into the emotional vocabulary or experience of the child, the child will learn the ''unspoken message'' that feelings are to be kept in and not expressed. This can lead to frustration for the child, which can erupt into anger, outbursts, resentment, and hostility. It can also result in the child becoming withdrawn, depressed, and pulled in. Parents need to encourage open, free expression and discussion of feelings by role modeling, the use of ''I feel'' statements, and the use of ''open-ended'' questions.

52. Parent feels responsible for the lifelong needs of the child with the disability.

• Looking-good, rescuing, enabling, or troubled-person behavior of the parent.

This parent has never allowed the child to own the problem of the disability. The parent owns the problem and feels over-responsible. The parent may have rescued or enabled the child to the extent that the parent has robbed the child of a sense of self-mastery, self-sufficiency, or self-confidence. The more responsibility, normal anticipations, and normal demands a parent places on a child with a disability the more the child will rise to the occasion resulting in a higher level of functioning. It takes ''tough love'' on the part of the parent to encourage self-mastery, self-confidence, and self-sufficiency in a child with a disability.

53. Parents seek the sympathy, compassion, and pity of others for their plight in life due to the lifelong nature of their target child's needs.

• Enabling and troubled-person behavior of the parents.

This reflects the unresolved grief and lack of acceptance on the part of the parents for the child's disability. These parents seem to get some reinforcement and satisfaction out of being ''martyrs'' for their children. They have not recognized that the problem of the disability is not theirs, but that of their child. They have not allowed the child to accept personal responsibility for the child's own life. They may have established their life's identity as "being the parent of a child with a disability.'' They need to let go of this identity and to promote the growth and development of the child. The child should be encouraged to be as self-reliant as possible. The parents are caught up in a depressive cycle and need help to become more positive about their own lives and that of their child.

54. Parent pesters, nags at, complains about, or needles the child's teachers, therapists, doctors, and other helpers.

• Acting-out or troubled-person behavior of the parent.

A parent with unresolved grief over the child's disability can get stuck in chronic anger and hostility, showering this behavior on the child's professional care takers. This is not healthy child advocacy. This is harassment, bitching, and complaining. It is often offensive, belittling, and undermining of the professionals' efforts. It does not reflect a parental desire to be on the ''treatment team.'' Because the professionals frequently treat such behavior defensively, antagonistically, or simply ignore the parent, the child becomes the loser. The parent needs help to overcome the grief response and work out the anger to become an appropriately assertive advocate for the child.

55. Parent misses conferences, IEP staffing, other habilitation service planning sessions, or refuses to visit classroom to view methods of the teachers and the child's reactions to these methods.

• Troubled-person or acting-out behavior of the parent.

This is irresponsible behavior on the part of the parent. It is the worst type of child advocacy. The parent has not fully accepted the roles of ''expert'' and ''advocate'' for the target child. Neither has the parent fully accepted the ''lifelong" need to monitor the child's services to ensure optimal care and functioning. A parent who ignores professional input neglects the child as much as a parent who doesn't feed or dress a child. The parent needs to be confronted with behavioral intervention to change this pattern of behavior.

56. A parent is consistently and obsessively fretting, planning, and arranging options, finances, housing, and medical arrangements for the child for when the parent is either retired or dead.

• Looking-good behavior of the parent.

If a parent begins to make lifelong financial plans for the child by setting up a trust fund within the first five years of the child's life, the parent will feel less pressure to develop such plans when the child reaches his teens. With the decrease in federal and state aid, it is imperative that parents establish self-perpetuating funded programming for the child. This takes early acceptance and planning by the parent. Obsessive work on these plans, however, is a sign of over-responsibility. The parent needs to take steps to prevent the setting in of over-stress and burnout.

57. Parent has problems with having fun, relaxing, or enjoying the other children and/or spouse.

• Looking-good or troubled-person behavior of the parent.

Parents who are over-responsible, stressed out, or burned out are running the risk of major physical illness slowing them down or stopping them. Stress management, burn-out prevention, and handing responsibility to the children is needed to allow the parent to relax and enjoy life.

58. Parent intercedes to get child out of trouble with teachers, therapists, and other authority figures.

• Enabling or rescuing behavior of the parent.

This pattern keeps the child from experiencing the negative consequences of bad behavior and helps the child to become more irresponsible. It is imperative that the parent allow the child to experience negative natural consequences as a vehicle to learn to accept personal responsibility and to function more appropriately and adaptively in the future.

59. Parents refuse to look objectively at or to change any of their behavior patterns that could have a detrimental impact on the child's future.

• Acting-out or troubled-person behavior of the parents.

The parents who deny or refuse to accept responsibility for their own actions, which keep the target child or other children from reaching healthy maturity, are guilty of ''parental malpractice.'' Parents can't be extreme in either tolerance or demanding; in either ''doing for'' or ''ignoring'' the child's development. An inconsistent behavioral approach will confuse children, making them unable to define their limits. Parents need to watch for extremes and inconsistencies in their reactions to their children to avoid adverse effects.

60. Parent strives to be a model parent, on the run 365 days a year from morning to midnight with no break.

• Looking-good, people-pleasing, or troubled-person behavior of the parent.

This parent is on a collision course with burnout and/or physical or mental breakdown. The parent needs to develop a healthy perspective and objectivity concerning the children. The parent needs to take care of her own physical and mental health if she is to be a healthy role model. Parents with children who are disabled need to function as advocates over the educational and vocational preparation period of their children's lives. If parents are burned out, they become ineffective, inefficient advocates. The children become the long-term losers.

up

Secondary

61. Child works hard and is an academic over-achiever.

• Looking-good behavior of the child.

It is likely that this child has received the unwritten messages of (1) achievement will result in your being loved, or ( 2) only if you excel are you worth anything. The pressure the child places on himself to excel can lead to burnout and/or physical or mental problems. It is important to let the child know that the child is loved for who the child is rather than for what the child does. The child also needs to be taught how to have fun and enjoy life.

62. Child begins to experiment with drugs, alcohol, smoking.

• Acting-out behavior of the child.

The child may be looking for thrills or a diversion from responsibility and stress. The child may also be looking to medicate problems the child is experiencing as a result of lack of confidence, feelings of insecurity, low self-esteem/low self-worth. The child needs understanding, a listening ear, and supportive nurturing from his parents. The child also needs appropriate education concerning the possible negative consequences of self-destructive, compulsive, or addictive habits. The child needs assistance in identifying healthy alternatives to negative behavior.

63. Child becomes sexually inappropriate or promiscuous.

• Acting-out behavior of the child.

The child may be looking for physical affection and affirmation which the child feels is missing in the child's family life. The child may be using this behavior as a defiant ''cry for help'' to get the family to recognize the scope and depth of the child's personal problems. The child may also be ignorant of human sexuality due to lack of healthy sex instruction in the child's own family. The child needs appropriate sex education. The child needs help to recognize the possible negative consequences of personal behavior. The parents need to provide positive attention, not punishment, to counteract this child's needy behavior.

64. Child isolates self and avoids interpersonal relationships with peers of the same and/or opposite sex.

• Pulling-in or nonfeeling behavior of the child.

The child may be afraid or insecure in interactions with child's peer group. The child may be lacking in social skills because the child has always been isolated within the family. The child's goal may have been just to ''not make waves.'' The child may fear rejection or disapproval in peer interaction with no personal resources to call upon to cope with this stress. The child needs to be encouraged to open up and to express feelings. The child needs help to recognize appropriate behavior for handling such interactions. Social skills, training, and reinforcement is necessary.

65. Child becomes depressed about his status and his future prospects in life.

• Pulling-in, nonfeeling, or troubled-person behavior of the child.

The child may never have been allowed to grieve or was unable to grieve openly about his condition. The unwritten family rule may have been to never talk about problems or "the condition.'' As the child grows older, being inhibited to express feelings makes the acceptance and grieving go unresolved; The stuffing of anger or feelings of hurt and pain can lead to maladaptive depression. It is important to encourage the child to openly admit, grieve, and accept the child's personal status in life. Open communication is necessary to address the depression.

66. Child refuses to work at or participate in making plans for the future.

• Pulling-in or nonfeeling behavior of the child.

This is indicative of the child's desire to remain dependent; being unwilling or incapable of accepting personal responsibility. It also may reflect lack of acceptance of the child's condition or status in life. The child needs to have a realistic picture of the benefits of future planning. Help the child develop an independent posture for future planning. Helping the child to accept personal responsibility is necessary to rectify this problem.

67. Child consistently and obsessively frets about the future.

• Looking-good or people-pleasing behavior of the child.

This is indicative of a lack of security, a sense of over-responsibility, and lack of self-confidence on the part of the child, This is also indicative of the child's desire to please the parents and to not be a burden on them or others. As the opposite extreme of the behavior in item 66, it is equally unhealthy for the child. Help the child recognize personal worth and value for who the child is rather than for what the child does. The child needs help in believing that the child is ''good enough" and will be a "winner'' in life no matter what the child chooses to do. The child needs to learn to fit relaxation, play, and fun into personal life.

68. Child is evasive in discussing the child's perceived losses in life including death, loss of the possibility of holding down a meaningful job, or loss of opportunity for career-oriented education or training.

• Nonfeeling or pulling-in behavior of the child.

The child has unresolved grief over previous losses in life. The child has not been encouraged or has been unable to reveal negative feelings or emotions. This child needs to be encouraged to believe that it is healthy to grieve a loss openly. It is OK and normal to cry, mourn, and despair a loss in order to reach a healthy level of acceptance of the loss. The parents need to role model such emotional release and be understanding and supportive of the child when such grieving occurs.

69. Child shuts out parents from the child's personal emotional life and denies all problems when prodded, cajoled, or nagged.

• Nonfeeling or pulling-in behavior of the child.

This may be the result of the child's perception of the parents' unresolved guilt, unresolved grief, and inability to accept the child's condition, status, or future. The child may be keeping in feelings to spare the parents. The child may not believe it is acceptable to express negative feelings to parents who are already overwhelmed with depression and sadness. It is imperative that the parents reassess their own mental health status and take care of their problems first. Only when parents are strong enough to be objective, supportive, and understanding without falling apart and personalizing what is said, can they help a child deal openly with his emotions and feelings.

70. Child becomes defiant; refuses to cooperate with teachers, therapists, professionals, or authorities.

• Acting-out or troubled-person behavior of the child.

The child may be rebelling against all of the attention, pressure, and emotional tension surrounding the child's disability. The child may resent being the emotional ''scapegoat" or focus of the family. In a subconscious way the child may be calling out for ''help'' for self and the family. It is important not to punish such behavior, but rather to determine the goal of the behavior. Are the parents pushing rehabilitation in hopes of making the child "normal''? It is important for the parents to examine their motives in this regard. Are the professionals pushing programs for the sake of the child or just to please the parents or the bureaucratic system? Are people really considering what the child wants in life? It is important that everyone involved with the child maintain open, honest, feelings- oriented communication with the child. It is also important to respect the wishes of the child and to give the child free-will choices and the responsibility for determining the course of action for the child's own life and future.

71. Child becomes defiant and resorts to running away, stealing, or other delinquent behavior.

• Acting-out or troubled-person behavior of the child.

The child may be rebelling against a perceived unjust, unfair, restrictive, abusive, neglectful, authoritarian, oppressive, or un-accepting home environment. The child needs to be listened to, not punished. To determine the goal of such behavior, parents and other authorities need to be open, understanding, and ready to help the child address the perceived troubles in the home. Such behavior is frequently a ''cry for help'' by the child. It is important to use this perspective in dealing with such behavior. Professional mental health services are often needed for both child and family.

72. Child resorts to over-eating, binging and/or compulsive eating.

• Pulling-in or nonfeeling behavior of the child.

Food is a sign of nurturing, love, and support. A child who chooses not to reveal personal feelings and emotions begins to feel others in the child's life pulling away, distancing themselves from the child. Actually it is the child keeping others at a distance. As the child feels more isolated, the child may turn to food for the sense of warmth, caring, comfort, and support the child feels is lacking in life. The anger and resentment the child feels about personal life, weight, and body image is also repressed into the eating. It is important to be open, understanding, and not pushy in the desire to open the child up to personal emotional life. Patience, non-personalization and non-abandoning of the child are needed to provide the climate for opening up and reducing the use of ''food'' as the emotional ''safety net,'' "teddy bear," or "nurse maid." Parents and other caretakers should never use food as a reward.

73. Child resorts to compulsive or addictive behavior.

• Pulling-in, nonfeeling, or acting-out behavior of the child.

The child who lacks an adequate outlet with which to ventilate feelings or emotions may consciously choose to avoid the emotional aspects of the child's life. The child may resort to obsessive or compulsive self-stimulation, use of drugs and alcohol, or irritating personal hygiene habits in order to ''medicate'' the feelings. The goal of such behavior must be dealt with before the behavior can be extinguished. It is imperative that parents and authorities be open and caring as they support and encourage the child to open up to feelings about life and self.

74. Child becomes overly active in all sorts of achievement-oriented activities, competitions, or events.

• Looking-good or people-pleasing behavior of the child.

In a desire to please self and others, and in an attempt to prove that personal self is ''good enough'' to be loved, accepted, and admired the child may become overly active. Let the child know that the child is loved unconditionally for who the child is and not for what the child does. Teach and assist the child to love self and to accept self for who the child really is. Role model and encourage rest, play, fun, and relaxation as useful human behavior for a balanced lifestyle.

75. Child is blamed for the problems in the family.

• Acting-out or troubled-person behavior of the child.

This child has become a scapegoat; the ready excuse to explain away the family's unhappiness and confusion. In a healing home environment no one family member is blamed for the trouble, sadness, or hardships experienced in the past or present. Forgetting and forgiving are tools used to create such an environment. In a healing environment all family members are encouraged to accept personal responsibility for themselves and to work together to help each other become healthy and strong. A healing home environment is a ''wellness'' oriented life space.

76. Parents ignore the need for vocational, career-oriented education and training for their children.

• Troubled-person behavior of the parents.

The parents may be so caught up in self-pity, self-importance or self-achievement that they ignore the future needs of the children. This is another example of parental malpractice. Parents of children with disabilities enrolled in public schools have the IDEA, PL 94-142, and Section 504 of the Anti-discrimination Act which are the federal law that protect education for the handicapped. Parents also have use of the annual Individual Education Plan (IEP) as a resource to advocate for their children's lifelong planning and development. Parents must advocate for their children's future since they are the experts on the children; no one can be as productive an advocate as the parent.

77. Parent bails child out of trouble with school, legal, or community authorities.

• Enabling and rescuing behavior of the parents.

This prevents the child from learning the negative consequences of acting irresponsibly. The parent misses the point of the need to let the child suffer the natural consequences for personal actions. This can enable the child to become even more irresponsible, resulting in intensifying the behavior pattern. Let a child suffer the minor inconveniences of getting into trouble. Hopefully this will teach the child to avoid such negative behavior in the future. It is important, however, for parents to be fully informed ahead of time of the punishments as they may do physical or emotional harm to the child. This is a judgement call for the parent. We all are aware of the brutal treatment children have received in jail-like environments. Ideally, parents can guide children with positive reinforcement to avoid these problems, or at least keep them to a minimum. Parents need to be aware of the professional help available to their children. Try not to let things get out of control, by staying alert and tuned into reality regarding your child's behavior. Don't fall into the trap of thinking ''It could never happen to me.''

78. Parent avoids, shuns, or discourages feelings-oriented discussions with children or spouse.

• Nonfeeling, pulling-in, or troubled-person behavior of the parent.

This behavior is inhibiting to the emotional growth of both the children and the family. The parent needs help in recognizing the value of open discussions of feelings to help both the children and the spouse become better problem solvers. If this negative parental behavior continues, anger, resentment, hostility, repression, and depression in the family members will result.

79. Parent resorts to humor, joking, and entertaining when faced with either problems or the negative realities of life.

• Entertaining or people-pleasing behavior of the parent.

This distracts the family, children, and self from facing emotions and feelings, preventing appropriate problem solving, inhibiting remedial actions from taking place. The parent needs help in learning appropriate role model behavior in the healthy confrontation of negative emotions and realities. The children can only learn to handle them by parental guidance and role modeling.

80. Parents blame agencies, schools, doctors, therapists, and other professionals for the lack of planning and advocacy for their children as they ultimately graduate into unemployability.

• Acting-out or troubled-person behavior of the parents.

Parents who have failed in their lifelong advocacy role with their children look desperately for "scapegoats'' upon whom they can heap the blame. This is counter-productive for the child, since it turns off and antagonizes those very people who could help the child. It also shifts the blame and keeps the parents from accepting personal responsibility for their negligence. To prevent this from occurring, parents need to take an active, highly visible role in advocating for their children from the beginning. A career or vocational perspective must always be part of the parents' assessment and planning for the education and therapy for their children.

81. Parents become confused as to how they have come to the point of their child's adulthood with no planned strategies for lifelong training, employment, housing, medical, and physical care.

• Pulling-in or nonfeeling behavior of the parents.

Because these parents have not fully explored the emotional dimensions of grief, loss, and acceptance of their child's disability, the parents have become isolated, insulated, and distant from the realities brought with the child with special needs. Thus they are caught short and surprised when the child graduates from a public school's exceptional program at 18 or 21 years of age. Parents need assistance to deal openly with their emotional response to their child and the disability. Realistic lifelong planning for the child must be done. If necessary, call on mental health professionals for assistance.

82. Parents feel embittered, resentful, and hostile for their plight in life and their perceived lack of support, understanding, and compassion from family, community, and society.

• Pulling-in, nonfeeling, or acting-out behavior of the parents.

This emotional response is often the result of projection, transference of blame, or scapegoating by the parents as a defense against exploring their own emotional response to the child and the disability. Parents need help to sort out the irrational and rational components of these feelings and to move on to a healthier perspective of their plight in life. Open admission of guilt, rejection, resentment, anger, and frustration over their plight can lead to a more healthy adaptation and ability to cope in the future.

83. Parents feel guilt when they realize that they are happy, relieved, and joyful over their children's imminent departure for college, work, or a group home.

• Looking-good or people-pleasing behavior of the parents.

They have adopted an ''over-responsible,'' often guilt-led model of dealing with their children. They probably have striven hard to be ''good'' parents but never felt ''good enough.'' Instead of helping the children become responsible for themselves, they may have over-worked themselves ''doing for'' the children to the point of exhaustion or burnout. It is normal for children to leave home as adults. It is normal for parents to be happy over their children's entering this new era in their lives. These parents need help in accepting this reality of life.

84. Parents refuse to accept the idea and even resent the implication of the need for a group home for their moderately or severely handicapped child. They insist on providing lifelong care at home.

• Looking-good, rescuing, or troubled-person behavior of the parent.

This behavior could be the result of over-bonding between the parents and child, resulting from unresolved grief, anger, guilt, resentment, a sense of over responsibility, and an unrealistic resolution of acceptance of the child and his disabilities. The parents often ignore the impact of this decision on their own physical and emotional health. They ignore their own mortality. They also ignore the social needs of their child, who needs the companionship of others at a similar level of functioning and development. Parents' rights need to be respected as they are gently assisted in looking at rational perspectives of the reality of the situation.

85. Parents continuously seek out alternatives and other directions to take in assisting their children handle adult responsibilities and there is no resolution to the search.

• Pulling-in or nonfeeling behavior of the parents.

Unable to address the emotional response to the alternatives, the parents problem-solving ability breaks down, resulting in confusion and indecision. The parents need assistance to address their emotional response and get the problem-solving process back on track so a resolution can be found. A continuing search for programs that promise a ''cure'' is a sign of unresolved acceptance of the lifelong nature of the child's disability.

up

Adulthood

86. Child, who has physical and intellectual capabilities, chooses to continue to be dependent on the parents for ongoing physical care, financial support, housing, food, clothing, etc.

• Acting-out, pulling-in, nonfeeling, or troubled-person behavior of the adult child.

This child has fulfilled a dependent role in the family and has not succeeded in accepting personal responsibility for self. The child needs help to recognize the need to go out personally one's own. The parents need help in learning to ''let go'' of the child, helping their child to become independent.

87. Children continue to burden parents with problems from their own jobs, marriages, the rearing of their own children, etc.

• Acting-out or troubled-person behavior of the adult children.

These children are not capable of functioning independently. They have never accepted personal responsibility for their own lives. They need help to turn this around. The easiest way is for their parents to lovingly and supportively stop rescuing and enabling the children's continuous unburdening of their problems. With the parents no longer available as a ''quick fix,'' the children may need professional help before they can begin to function independently.

88. Child develops alcoholism, drug addiction, an eating disorder, mental illness, compulsive shopping, or some other form of problem behavior, including becoming abusive, neglectful, or a sexual deviate.

• Acting-out or troubled-person behavior of the adult child.

The adult child needs professional help. The parents may need to participate in a behavioral intervention to get to professional help for their adult child.

89. Child becomes depressed, suicidal, and loses all hope for the future.

• Troubled-person behavior of the adult child.

This often comes from a lifelong pulling-in and keeping-in of feelings and emotions. The adult child needs professional help and the parents may need to assist in a behavioral intervention to get professional help for this adult child.

90. Child resorts to child-like behavior in order to ''hook'' others into caring for her.

• Troubled-person behavior of the adult child.

This adult child has developed an over-active dependency on others and is not ready to face adulthood with its incumbent responsibilities. This adult child needs professional help. The parents may need to participate in a behavioral intervention to get professional assistance for the adult child to take on an adult role.

91. Child has problems holding onto a job, maintaining a position in a sheltered workshop, or maintaining residence in a group home due to impulsive, explosive, inappropriate and maladaptive behaviors.

• Troubled-person behavior of the adult child.

The adult may have never been taught to control impulsive behavior and is incapable of controlling himself in the ''real world.'' This adult child needs professional assistance to become more compliant in a demand situation. The parents can help the child learn compliant behavior by refraining from rescuing the child and by cooperating with the professionals involved.

92. Child continues to deny the existence of any emotional feelings; keeps all feelings inside, hidden from others.

• Pulling-in and nonfeeling behavior of the adult child.

The behavior may be related to the lack of emotional expression in the family. The behavior may be based on the fear that if people knew how the child really felt, they wouldn't like or accept the child. This adult child needs help to recognize that all feelings are OK; there is no such thing as a "bad feeling." The adult child needs a caring, supportive, and understanding environment in which to experiment and exercise open expression of emotions and feelings.

93. Child continues to have problems, financial setbacks, gets into trouble with the law, and/or other authority figures.

• Trouble-person behavior of the adult child.

The adult child has failed to take personal responsibility for own life. The child is in need of professional help. The parents may need to participate in a behavioral intervention to help the adult child to recognize the need for such help. If a behavioral change is to take place, parents must not rescue this adult child.

94. Child becomes a workaholic, an over-achiever, compulsively driven to success.

• Looking-good or troubled-person behavior of the adult child.

This adult has retained the belief that in order to be accepted, loved, approved of, and considered ''good,'' a high level of achievement is necessary. This adult child may have felt not ''good enough'' and is struggling to prove personal worth and goodness. This adult might also feel guilt over the hardships experienced by the child's family of origin, and the child may be working out that guilt through work and over-achievement. At this point the adult child needs professional help to let go of the driven, over-responsible role. The parents may need to participate in a behavioral intervention to assist the adult child in recognizing the need for help.

95. Child has a problem facing life seriously an with being unable to solve problems in a healthy manner.

• Entertaining or troubled-person behavior of the adult child.

This adult child has become used to being a distractor in the face of problems and cannot break the habit. This causes problems at home, at work, at school, and with family and friends. The adult child needs help to recognize that it is ''OK'' to be serious and to face problems head on. This person may need professional help to do this. Parents may need to participate in a behavioral intervention to assist this person in recognizing the need for help.

96. Parent fears imminent death of spouse and self; fears that the adult children will be left with no one to care for them.

• Rescuing, enabling, or troubled-person behavior of the parent.

The parent has not released the children from being children. The parent does not relate to the adult children as adults. This may be out of a need to feel "wanted" or "useful," or out of guilt. This parent needs help in "letting go" of the children, in accepting the fact of eventual personal death, and in dealing with all of the emotions involved in the "letting go" process.

97. Parents continue to feel embittered over the unfair and rough road their lives have taken.

• Troubled-person behavior of the parents.

Their unresolved grief, anger, guilt, resentment, hostility, and depression over their misfortunes and the child's disabilities results in a "self pitying," pessimistic perspective. These parents need help to accept the reality of their lives and to "let go" of their unresolved feelings; a renewed spiritual life and the acceptance of God's role in their lives might provide some solace and comfort to them.

98. Parent refuses to admit to any problems or negative consequences of having a child with special needs.

• Nonfeeling or pulling-in behavior of the parent.

These final acts of emotional denial complete a lifelong habit of denial. They reflect an irrational perspective that at this late date in the parent's life cannot be altered. A parent who finds self in chronic denial of the emotional effects of having a child with a disability has never accepted the reality of the disability. By keeping in or denying the feelings, a parent runs the risk of developing physical illnesses such as hypertension, ulcers, gastrointestinal disease, heart problems, or cancer. It is physically healthier to face one's problems honestly and to deal with the emotions involved. No parent of a disabled child needs to be a quiet, suffering hero who shortens personal life span in the process.

99. Parents struggle to overcome ill health and critical illness in order to stay alive and be well enough to care for their adult children with special needs.

• Enabling, rescuing, and troubled-person behavior of the parents.

The parent is so over-responsible, over-invested and over-dependent on the children needing the parent that the parent becomes irresponsible in taking care of personal health. The parent ultimately becomes a victim of over-responsible, guilt-led and irrational behavior. The parent needs help to "let go" and take care of self. The parent needs assistance to recognize that the adult children will be better off by caring for themselves. After all, the adult children will have to survive without their parent eventually. It is better to let the children begin the adjustment process now, not after the shock of their parent's death, when adjustments are harder to make.

100. Parents refuse to take a vacation, resist retirement or moving to smaller quarters, and continue financial support for the adult children. The adult children are allowed to move back home without contributing financially.

• Enabling and rescuing behavior of the parents.

The over-responsible, guilt-ridden parents are dependent on the children. This model of parenting encourages adult children to become helpless, to be incompetent and to remain dependent as adults. The parents need help in learning to take care of themselves and to ''let go'' of the children, allowing them to fend for themselves. The children with disabilities who cannot care for themselves need to be provided for in their early teens and twenties when the parents are in their forties and fifties. As parents enter their sixties and seventies they should not have to panic about what to do. The children should be in either a group home or a supervised living arrangement.

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G. Action Steps to Implement a Lifelong Normalization Program

After reading this chapter you are convinced that you want to take the steps to encourage lifelong normalization for your target child, your child's siblings, and yourselves. Here are some steps you can take now:

Step 1: Before you address lifelong normalization, clarify your feelings about such a process. Answer the following questions in your journal:

• What is my definition of normalization? How does it differ from my definition of perfection?
• What does lifelong normalization for my target child mean?
• What does lifelong normalization for my other children mean?
• What does lifelong normalization for me as a parent mean?
• How do I feel about my answers to first four questions?
• What would be the negative consequences of not pursuing normalization for (1) my target child, (2) my other children, (3) my spouse and (4) me?
• What are some beliefs I hold that prevent me from pursuing normalization for my target child? For our family?
• What replacement beliefs do I need in order to pursue normalization more enthusiastically?
• What new behavior patterns do I need to develop in order to pursue normalization more enthusiastically?
• What are my motives in taking the initiative to ensure lifelong normalization of my target child?
• How are my efforts more for my child than for me? How does my attitude toward my child affect my efforts at normalization?
• What are the current high-stress family behavior characteristics that are blocking movement toward normalization in (1) my target child, (2) my other children, (3) my spouse and (4) me?

Step 2: After you have assessed your feelings about normalization, look at some of the barriers that block your family's pursuit of normalization. Answer the following questions in your journal:

• What is the quality and level of acceptance of my target child's disability on the part of: (1) my target child, (2) my other children, (3) my spouse and (4) me?
• What is the level of unresolved anger, guilt, resentment and grief present in: (1) my target child, (2) my other children, (3) my spouse and (4) me?
• How open are my spouse, my children and I to suggestions from professionals on how to raise our family?

• How open am I to my feelings about my family life? How open is my spouse or my children to their feelings? How well do we express our feelings?
• How threatening is it to consider treating my target child normally?
• How threatening is it to consider placing the responsibility for the children's behaviors on their shoulders after age 7, no matter how disabled they are?
• How comfortable am I with a ''tough love,'' "being consistent,'' and "being firm" approach with my children? How willing am I to learn this approach?
• How effective a team are my spouse and I in implementing a program of normalization? What obstacles do we need to overcome first?
• How well have we planned for our lifelong family development? What beliefs do I need to overcome in order to plan for the future?
• How active an advocate am I willing to be? How does being an advocate differ from being a rescuer or enablers for my children? How will being an advocate of normalization benefit my family? Me?

Step 3: Consider the 100 items on lifelong normalization in this section and then consider these next questions, and respond to them in your journal:

• What are the constant themes involved in the normalization process as presented in this section?
• What role does child management or discipline have in normalization?
• How comfortable were you in considering the suggestions given in this section?
• With which suggestions among the 100 items did you strongly disagree? What in the suggestions bothered you?
• How realistic were the suggestions given in these 100 items? What would have made them more realistic?

What did this reading and activity tell you about your:

• acceptance of your child's disability?
• resolution of grief, anger, resentment, hostility, and depression over your child's disability?
• willingness to treat your target child as normally as possible?

• treatment of your spouse and the other children in your family?
• ability to allow your children to accept the natural or logical consequences for their actions?
• ability to allow your children to accept personal responsibility for their lives?
• ability to take a ''tough love'' stance with your children?
• ability to refrain from being a ''do for'' parent?
• ability to take steps to prevent burnout and/or physical or mental illness in your own life?
• ability to be a useful role model, an advocate for your children?

How useful is it to consider future problems as you deal with the current issues facing your family, children, and self?

• How much have you learned about normalization from this activity? What have you learned? What are you going to do differently as a result of this learning?

• How useful was this activity in helping you analyze your current plan of action with (1) your target child, (2) your other children, (3) your spouse, (4) yourself?

• What new behavior patterns and beliefs will you put into action as a result of this exercise?

Step 4: If you still have difficulty in understanding or implementing a program of normalization in your family, return to Step 1 and begin again.

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Coping.org is a Public Service of James J. Messina, Ph.D. & Constance M. Messina, Ph.D.,  Email: jjmess@tampabay.rr.com  ©1999-2007 James J. Messina, Ph.D. & Constance Messina, Ph.D.  Note: Original materials on this site may be reproduced for your personal, educational, or noncommercial use as long as you credit the authors and website.