Relationship Between Adolescence and High-Risk Behaviors – Part 2

Adolescence is a time of rapid change. In a span of just a few short years, teens transition dramatically in almost all realms of their lives. Physically, they grow in leaps and bounds and start to appear like mature adults.

Cognitively, their thinking becomes more sophisticated.

Socially, relationships are renegotiated, and teens develop the capacity to form deep intimate relationships with others. At the same time, the roles that they occupy in society also change.

Partly because teens start to look more mature, people surrounding them sometimes begin to treat them like adults — giving them mature responsibilities and adult expectations. While significant development occurs during the teen years, full maturity is by no means complete. Studies show that neurological development is not complete until the early 20s.

Decision-making and future-oriented thinking are not fully developed. Thus, while teens are entering into adult roles and while they may physically appear to be mature, teens might not be fully equipped to deal with these new tasks and challenges. For these various reasons, the teen years can be an especially stressful and fragile time, making adolescents more susceptible to engaging in risky behaviors and be unable to weigh their risks and benefits. At the individual level, youth who have low self-esteem, who have negative peer groups, and low school engagement or educational aspirations are more likely to engage in risky behaviors.

Family factors include poor parent-child communication, low parental monitoring (e.g., parents are unaware of youth’s whereabouts), and a lack of family support.

Not surprisingly, when parents themselves engage in risky behaviors, teens also are more likely to do so.

Finally, extra-family variables also play a role in the risk behaviors of youth.

Negative school climate, and poor (or no) relationships with non-parental adults also are at more risk for negative behaviors. For many, what actually happens during adolescence is that relationships are renegotiated rather than broken. This means that while changes occur in the relationship, most parents and teens continue to maintain a close relationship during these years.

This renegotiation and transition in the parent-child relationship is only natural as the teen is growing up and is having an increased capacity for reasoning, self-discipline and independence. As parents start to experience this ‘renegotiation,’ it is important to remember that parents continue to be the most important relationship in their teens’ lives. And while conflict and resistance might arise when parents show concern or discipline their teens, parents need to know that this is all part of the natural progression of relationships as their children grow. Here are several parenting strategies that parents might find helpful:

1. Act on teachable moments. Talking with teens does not always have to happen on planned one-on-one serious talks. Teachable moments, which are the best times during the day to talk, can emerge at various times of the day, often in the context of doing shared tasks or activities like cooking, driving home or dinner. Issues such as death, sexual behavior or substance abuse can come up anytime. Take advantage of these windows of opportunity, even when they are only 45 seconds long.

Parents who are aware and sense that youth need to talk will look toward these teachable moments.

They are more important over the long run than giving a long lecture.

2. Avoid useless arguing. This does not mean that parents have to avoid confrontation. Useless arguments are those that simply fuel hostility yet have no real purpose. It is important for parents to remember the following:

• Avoid reasoning with someone who is upset, as it is futile. It is better to wait until tempers have cooled off before sorting out disagreements.
• Do not feel obliged to judge everything their teen says. Parents and teens need to be able to agree or disagree.
• Parents need not spend time talking teens out of their feelings. Teens have the right to be angry, confused, disappointed, hurt and insecure. Parents can acknowledge their teen’s reaction without condoning it. This type of response often defuses anger.
• All this said, parents need not let disagreements dissuade them from talking to their teens. Studies show that parents who talk to their teens (and even disagree) still are closer to their children than those who avoid these types of conversations.

3. Be respectful. Parents get offended when children treat them discourteously.

Yet they need to be careful that they do not do the same to them.

Example: A parent would be very angry and offended if their teen used offensive and hurtful language. Parents also need to make sure that they are not verbally assaulting their teens.

4. Be willing to be unpopular. Parents need to accept that there will be times when adolescents will disagree with them and possibly even act as if they stop ‘liking’ them.

It is essential to remember that parenting (and not being a ‘buddy’) is a parent’s primary role. It is important to resist the urge to win their favor or spend too much time pleasing them.

5. Clearly communicate expectations. It is essential that parents pass along a strong sense of values. This is one of the fundamental tasks of being a parent. Teens cannot read their parents’ minds so it is important that parents clearly communicate what their expectations are in terms of behaviors and values. No matter how uncomfortable it may be, parents need to talk to their children about what’s right and wrong — about appropriate and inappropriate behavior. Again, look for those ‘teachable moments.’ For instance, a good time for these discussions might be while parents are driving with their teen. Not only does the parent have a captive audience, but they can also avoid the need for eye contact. This can help teens feel more comfortable.

6. Encourage participation in positive activities. One effective way of discouraging engagement in negative behaviors is to encourage participation in positive activities. Today, there are many activities that teens can be involved in which encourage the development of various competencies and are enjoyable. When teens develop a sense of competency in acceptable activities, they will feel worthy and accepted. In feeling competent, teens likely will have fun and reduce stress.

Parents need to assist youth in finding these opportunities. For instance, finding volunteer opportunities and developing a supportive network of family and friends will help buffer high-risk behaviors.

7. Focus on what is important. Adolescence is a time of identity seeking and experimentation of different roles. This can be irritating and bewildering to parents.

But as painful as it may be to watch, it is one way that teens learn to function on their own without having to consult their parents about every decision.

Guiding principle: Do not make a fuss about issues that are reversible or do not directly threaten your child’s or another person’s safety.

These issues include unwashed hair, a messy room, torn jeans and so on.

Parents need to save their concern and action for safety. Safety is a non-negotiable issue. Safety rules need to be stated clearly and enforced consistently.

Example: Drinking is not acceptable. If you have a party here, no beer or hard liquor is allowed … and an adult must be present at any party you attend.

8. Help teens learn from experience. No matter how hard parents want to protect their teens from risky behaviors, they cannot watch their teens 24 hours every day or protect them from every risk. When negative consequences arise, parents need to use those situations to help teens learn from experience. Sometimes, dealing with the consequences of their own actions inspires sensible behavior more effectively than any lecture or discussion.

Example: A father went away for the weekend and without permission, his son invited a few friends for a party with no adults present. Several other teens crashed the party, drank heavily and threatened to get violent. The boy felt he had lost control in his own house. After his father calmly talks to him about what happened, the son realizes his father was right in insisting that adults be there

9. Help youth make healthy decisions. Parents cannot be there all the time to help their children make healthy choices; thus, it is important to equip teens with the skills needed to make decisions on their own. An important skill in decision-making is assessing benefits and costs. In helping youth do this, one needs to be honest in helping teens look at the benefits and the costs of various behaviors. For instance, in talking to teens about smoking, parents need to be honest about both sides. Positive consequences might be that some people find it enjoyable or even “cool.”

Negative consequences include adverse health conditions, financial cost and the fact that it can give unpleasant odors.

Similarly, in talking about engaging in sexual behaviors, teens might consider the benefits (e.g., they feel close to someone and want to take the next step), but also consider the risks (e.g., STDs, emotional consequences).

10. Listen to your teen. The most important thing parents can do for their adolescents is to listen to them. Parents must recognize and respect the value of what they say. Too often parents dismiss or underestimate the significance of the pressure their children feel and the problems they face. Listening and valuing teens’ ideas is what promotes the ability of parents to effectively communicate with them.

Listening to a teen does not mean giving advice and attempting to correct or control the situation.

Sometimes all a teen might need is for parents to listen or be there for them. It is essential that teens understand that they are being heard.

Adolescence is a unique period of the lifespan. It is full of changes and challenges, but also of growth and opportunities. Adolescents are particularly susceptible to high-risk behaviors so parents and other concerned adults need to support youth as they go through this period. The process surrounding high-risk behaviors can be complex, and often it is not enough just to tell a child to ‘say no’ to engaging in these behaviors. Risk-behavior prevention must cover a wide range of issues that adolescents face in order to be most effective. Parents and community organizations must address issues such as family violence, psychiatric illness, poor interpersonal skills, learning deficits and the dysfunctional development that might be associated with such behaviors. Parents must clearly express their expectations, and must help equip youth to assess risks, to be assertive, and to have the self-esteem and forbearance to withstand external pressures that might push them toward behaviors that lead to negative outcomes.

Does my child need a therapist?

George, age fifteen, rebellious teen, only eats white foods-macaroni, milk, rice, sugar.

Sarah, age sixteen, has cuts on her arms and bruises on her back, and says smoking pot once in a while is okay. Claudia, age thirteen, has nightmares, and has probably started being sexually active.

Barbara, age seventeen can’t seem to make or keep a friend and is losing more weight than normal.

Robin, age fourteen, loses something almost every day, like friends phone number, homework, library card, and even money. Which of these children needs professional help?

When it comes to knowing if a child (say, your child) needs therapeutic help for mood or behavioral disorders, professionals agree on one answer: “It all depends.” And there’s agreement that dealing with childhood psychological disorders is a risky business.

If you take action, you risk harm; and if you do nothing, you risk harm.

What a choice!

Keeping in mind the specific complexities of any human being, the range of possible diagnoses, the ever-increasing knowledge about interconnections between biology, chemistry and mental health, and the myriad treatment options available, the only sane thing to do is to bone up on the When-Where-What-Who-How’s of child-specific therapy, and make the best decisions you can. Herewith is some brief notes and assistance  of what to expect and do when you enter the world of children’s special needs.

• When. It’s time to seek help when you’ve engaged in everything that common sense, parenting books, and trusted friends and family recommend. Understandably, parents are loath to admit that their offspring could be anything less than perfection incarnate.

There’s an active self-protective mechanism that allows parents to chalk difficulties up to “it’s a stage (he’s) she’s going through” or “boys will be boys” or “the system needs to adjust to the kids, not the other way around.”

Given that hesitancy, the truism, “when parents think the child needs help, then the child does need help,” is probably true. That day may come only after a teacher suggests that an evaluation is in order, the child hurts him or herself, or a doctor sees something that raises a red flag. Red flags tend to go up more readily for boys than girls, and that makes it appear as though boys have more psychological difficulties than girls. This is not necessarily so. Girls often present psychological problems in quiet ways, such as avoiding friends, falling grades and new fears.

Boys, on the other hand, tend to “act out” which gets everyone’s attention. One set of problems is no better or worse than other; both can be helped by professionals.

If you’re thinking of waiting, envision doing nothing until David enters adolescence with the same problems, newly compounded with hormones and semi-independence from home. Sooner is better.

• Where. When parents have a general idea that something isn’t right, the next step is to seek a diagnosis. Often, public institutions are the first line of defense. Any parent with any concerns can have their child screened for academic, learning disabilities, mental, physical, emotional and any other issues imaginable. The outcome might be reassurance that the child is on the appropriate trajectory, or that the child does have a problem, and can be connected to appropriate services. Babies born prematurely are particularly at risk for behavioral, learning, and emotional problems, even after the child has caught up physically. So care has to be taken from the onset to protect the fragile child

Past the preschool years, public schools are mandated to offer screenings for a variety of learning and developmental problems. These are free to the parents and will provide lots of information and a proposed plan to deal with any issues that surface. When you don’t like or trust the outcomes of such a screening, seek a second opinion. Call a clinical psychologist who specializes in children for an evaluation; this person should be able to recognize what signs and symptoms point to which kind of therapy. Especially when the issue is anxiety or depression, a clinical evaluation may be enough and treatment can begin promptly. Such an assessment might also lead to a whole battery of quantitative tests that include academic, mental and emotional health, and speech, language, sensory, and neurological testing. These are usually offered at large institutions, such as a Children’s Hospital. You may find that your child has a very high IQ but also very high distractibility and mild dyslexia, for example. Oftentimes learning difficulties go hand in hand with emotional and behavioral issues. This kind of detailed, quantitative information can save time in treatment by getting the child to the right professional’s office immediately, although it comes with a hefty price tag that insurance may or may not cover.

• What. Now that you’ve had an assessment, evaluation or battery of screening tests for Theresa, does she have attention deficit/hyperactivity disorder (ADHD)? Obsessive-compulsive disorder? Attachment disorder?

Sensory integration disorder? Something on the autism spectrum?

Dyslexia? Oppositional disorder? Perhaps a hearing deficit? A mood disorder?

Post traumatic stress?

Some of these are psychological issues, and some are learning differences or deficits. More to the point, they often come in two’s or three’s, not singly.

• Who. With overlapping diagnoses, parents may be on a long and winding road through many professionals’ offices. Don’t be surprised to end up with a team of professionals that might include a psychiatrist, a therapist for the parents, another for the child, and perhaps an occupational or speech therapist as well.  Ideally, parents are part of that team. Some say that when the child has a problem, it’s the parents who need the work. And yet, research is uncovering the biological bases of more and more disorders every year. Parents are, at the very least, almost certain to play a part in their child’s treatment. When parents are facing battles of their own with grief, mental illness, substance abuse, severe financial stress or other problems, they may not be as active as they’d like on behalf of their children. In these cases, it may fall to child care providers, teachers, or others in the family to work with and for that child. As for the lead therapist of a working team, what should a parent look for? Compassion, a broad-based view of children’s psychological needs, and someone who “clicks” with your Steven. Of those, compassion comes first.

Seek someone who is kind and understanding about the difficult path your child has been on. When the therapist approaches you as if your child is a bundle of pathologies, think twice. Instead, look for a “first, do no harm” approach, with a person who sees the excellent qualities Jeremy brings, as well as the struggles he faces. Then make sure he or she has a broad set of skills, and the flexibility to recognize that when one approach isn’t working it’s time to move to plan B, C or D.

There is no one right road, regardless of how many parenting gurus suggest otherwise. As for “clicking,” a therapist has to have a relationship with the child.

Chemistry counts, and if after a handful of sessions your child is still uncommunicative, don’t lose time before trying a new therapist.

(Consider that it is the parents’ job to get the child to the first appointment; after that, it’s the therapist’s job to create a bond.)

• How. After getting a diagnosis and choosing a therapeutic team, you’ll be offered a bushel of ways to treat childhood behavioral, emotional, and learning disorders.

Step one in almost all cases is pretty basic: consistency, diet, rest, and regulation.

In fact, some say that the best things you can do for a child with depression is give him or her a protein-rich breakfast, an hour of aerobic exercise daily and fish oil, which has a palliative effect on mood disorders. In general, though, when a child leads a chaotic life with questionable nutrition and inadequate sleep, disorders are hard to treat. And the therapy itself? Young children will play with puppets, dolls, other toys or games, and from this play the therapist learns about their world.

When difficult issues surface in play (Mom and Dad fighting, for instance) the therapist will guide the play to a resolution more satisfactory than having the child get pummeled in the process. The play becomes the conduit for offering new perspectives, coping strategies, and even concrete techniques such as deep breathing to ward off anxiety. If your Dawn won’t go alone, Mom and Dad may go along, too. If that doesn’t work, then the parents might go without Dawn, and receive coaching on how to set up a consistent household, schedule and expectations that work.

Another option: family therapy. Here, the idea is that the child who presents “problems” in the family constellation isn’t operating in a vacuum. Instead, Donald is performing his role, as are all the other family members. Perhaps a sibling has the role of “good child,” the mother has the role of the family’s emotional barometer, and the father has the role of playmate. With family therapy, all (or at least most) of the family attend sessions together, and it’s the interactions between them that are the focus, and breaking out of those roles may be the goal. Family therapy takes the pressure off Donald, a potentially huge relief.

Yet another option: group therapy. If it’s a group of 12-year-olds who tell Brian that they don’t like him because he argues all the time, grabs and interrupts, he may hear it more clearly than if a caring adult gives the same message.

And, the group provides an opportunity to practice budding social skills.

Still more: there is a surprising body of research indicating that Eye Movement Desensitization and Reprocessing (EMDR) can help, especially with children who are suffering from past traumas. In practice, this looks like the child following an object that the therapist moves rapidly before his or her eyes. Any form of activity that bounces attention quickly back and forth from the right to the left side of the brain helps “unstick” traumatic memories that are impeding daily life or growth.

• And finally, there are psychotropic medications to treat many conditions: anxiety, compulsiveness, attention deficit/hyperactivity disorder, depression or impulsiveness. Many parents are reluctant to use them for understandable reasons: they believe using psychotropic drugs may set up a pattern of medicating problems away, they fear dulling little Angelo’s personality, or they may cause metabolic changes that effect growth. Recent news about a link between antidepressants and higher rates of suicide, the abuse of ADHD drugs among older teens, and the overuse of sleeping medications for children all scare parents away. So, choosing to medicate isn’t always straightforward, and probably the child’s pediatrician isn’t the right person to make that call. Ask for a referral to a child psychiatrist. While thinking about whether to medicate or not to medicate, note that there is risk if you choose not to. If you don’t medicate, the child suffers from the presenting problem and very likely social problems that are an outgrowth, and which can become ingrained patterns that are hard to shift later.

Parent after parent says, “I wanted to do everything I could to avoid using medications, but once we finally went that route, life was bearable for Tara for the very first time. Medication has been a lifesaver.” Expect that it will take time to get the right drug and dosage, and that when the child grows, your doctor will need to reformulate the prescription again, and again. Note, too, that medication is rarely a solution all on its own; it works best in conjunction with some kind of “talk” therapy and consistent modifications to the home and school expectations and environment.

Whatever treatment is pursued, you’ll want to know when recovery has begun.

“Recovery” can be a tricky word; when parents hold on to the glowing expectations they’ve carried since Rob’s birth, recovery may be hard to achieve. If, on the other hand, recovery means that life gets easier for him, then recovery is eminently achievable. The best sign that you’re on the right track? Friendships improve.

When your child brings home friends who represent the best, not the worst, in him or herself, you’re on the road forward.

Red Flags
When you see these behaviors in your child, consider seeking help:

• attachment difficulties
• changes from your child’s usual behavior
• cruelty to animals
• difficulty making and keeping friends
• difficulty sleeping
• excessive shyness
• explosive behavior
• lack of empathy and/or remorse
• missing medication from parents or siblings
• newly developed fears
• nightmares
• repetitive behaviors such as hand washing
• self-abuse (burning, hitting, biting, hair pulling, cutting) – Self-harm consists of behaviors that people intentionally engage in that cause physical bodily harm to themselves
• substance abuse – Teen substance abuse is both a frightening and frustrating experience that affects the entire family
• unexplained behavioral problems
• unreasonable defiance
• violence against others
• withdrawal

Say “no” to stigmas

Even when parents recognize that their child is experiencing problems in school, with friends, or at home, parents may want to avoid screening and say, “I don’t want my kid labeled.”

(There may be a subtext of “I don’t want myself labeled as the parent of a problem child” underlying this viewpoint, too.)

There’s good reason to worry for the children; lots of research indicates that teachers and others treat children according to their expectations; when they’ve been told that the child has “oppositional disorder,” they may take a geared-for-struggle stance, for instance. And children tend to live up (or down) to those expectations. As for relationships with peers, you don’t have to go far to find stories of children who have been embarrassed by being labeled a “special education student,” a broad category that includes children with anything from mild dyslexia to severe developmental disabilities. Classmates do notice who goes to the office to receive medication, who gets pulled out of class for “special” help, who gets to have an extended time for test taking, all common (and appropriate) ways that children are accommodated. They notice, and they may be unkind about it. In other words, stigma is alive and well in relation to mental illness and every form of special needs. Having agreed that stigma is a persistent hindrance to seeking treatment, experts say parents simply have to face it and proceed to treatment anyway.

That begins with accepting for themselves and their children that mental disorders are no different than diabetes or any other disorder: unpleasant and long-term, but treatable. Then parents (and children as they grow older) may find themselves becoming advocates for people with mental or emotional disorders, spreading the word that stigma is perhaps the most treatable part of a child’s special needs.

“Just Say No to Stigma” could be the rallying cry.

Here are some tips that will help you become your child’s best advocate!

Remember:

1. Believe and trust in your own insight and intuition
2. Believe in your child.
3. Believing in your child is essential. No doctor, therapist, teacher, or anyone knows your child better than you do. You have lived with your child with a disability longer and more intimately than anyone else. Only you have the long perspective. The big picture. Trust that knowledge.
4. Believing in your intuition is being able to trust yourself and those feelings you have. A hunch is usually a sign, follow your hunches.
5. Information is power.
6. The squeaky wheel gets greased.
7. You are the change agent. You can do it

Educating yourself is critical. It is very important to learn what your child’s rights are before you can fight for them.

There are many sources of education and support in each state. There are advocates in your state. You can find them here:

1. Yellow Pages for Kids with Disabilities
2. Education.com
3. Parents Helping Parents
4. The Council of Parent Attorneys and Advocates, Inc. (COPAA)

They are your allies and will prepare and support you. The more skills and information you learn the better you can advocate.

Other Tips:

1. Documentation — Keep a notebook

You must write down all the facts and keep ‘a paper trail.’ There are two different kinds of facts. One is objective and the other is subjective. Objective facts are the name, telephone number and title or position of the person you talk to. Don’t be afraid to ask.

Say “Just a minute, please, I need your name and title. I’m writing this down.” Facts are listing the questions you ask and writing down the given answers.

Put quotes around answers. Ask the person to repeat themselves or say “I heard you say that you do not think Ken can be in your day care center because he has a wheelchair.

Is that what you said?” Write it down. It is okay to say that you are writing the response into a notebook. If you get an answer you don’t agree with, don’t understand or you know is wrong, say so.

Always ask for the statement to be sent to you in writing.

Say, “Please send me a copy of that in writing.” You make this request when you are talking with educators, insurance companies, Medicaid, a community agency, hospitals, landlords, restaurant owners and others. Keep a file folder or box or drawer for the written replies and paperwork you will receive. When you have time, organize it either chronologically or by subject. Subjective facts are your thoughts about either a person or an event that occurred. Did the person act friendly? Ignorant? Were they willing to talk with you?

Were they evasive? Just jot down a couple of words or sentences to remind you what kind of conversation you had. Remember, keep your notes on facts and opinions in one place, either on a computer or in an organized notebook. This is a quick and easy way to make sure that your notes are not here and there, but easy to find. Over the years, you’ll see why having your notes together is a time-saver. Date your notes and thoughts.

2. Letter Writing

After the phone call, sit down and write a short letter which states that you just talked and this is what transpired on the phone. Keep it as objective as possible by stating the facts.

At the top of the letter reference the subject, e.g., “Re: Occupational Therapist Still Not Hired,” or “Re: Second Request For Payment of Physical Therapy Sessions.” To give your letter real muscle though, there’s a simple technique called “cc” or “carbon copy.” This is at the end of the letter and it’s to let the recipient know that you mean business. You “cc” your letter to their boss, or the agency head that administers the program.

Using two or more cc’s can be useful: you can “cc” an advocacy organization such as the national UCP office or the affiliate, or the parent training center, and your state legislators or U.S. Senator or Representative. Don’t worry about whether or not your Congressperson cares or not.

They do. This is one “cc” that will do more good in the long run than any other. The people who amend, authorize the funding or change the laws of the land need information from you. When there is no law or regulation, they can make new ones.

Your voice is very important. They need you to keep them informed.

3. Legal Representation Or Alternate Dispute Resolution

You can hire a lawyer later if you need to or if you opt to utilize a formal Alternate Dispute Resolution process when it’s available or offered. Your state has a Protection & Advocacy agency and your county has a legal services office. With your documentation and knowledge of the facts and a feeling about what is going on you will save time and attorney’s fees, and personal aggravation, by having your records straight. You will also know a great deal and be able to figure out if the mediator or lawyer is competent and knowledgeable about disability issues.

You cannot assume that the Domestic Relations lawyer, that you used for your divorce, for instance, also understands how Special Education law works or that an appointed mediator, for instance, knows what a Personal Assistance Services caregiver is. Like all professionals you will be involved with, they are paid for their expertise and services and it is you who hires or consults them.

Always get several referrals first and then “interview” the professional when possible, to see if you can work with them. Again, trust your intuition and observations.

You can say “I’m shopping for an (attorney) (doctor) (dentist) who understands disability. I’ll get back to you when I decide what to do.”

4. Meetings

When a meeting is scheduled at a time you can’t attend, ask for it to be postponed. Propose an alternative time. When you know you are going to be late, call and let them know. Be sure you know the purpose of the meeting. This will establish what your role is and will help you focus on what your child needs to have happen. Be prepared.

If you are going to change the IEP, have your suggestions in writing, preferably typed, with extra copies. Take a moment at the start of the meeting to write the name of everyone in the room and their title.

Don’t hesitate to ask “Just a minute, how do you spell your name?” Bring a tape recorder if you want to. Bring a friend or advocate for support. Introduce the person. If you don’t understand something that is happening in the meeting, or emotions flare, ask for a break. Say “I think I need a break. I’m going into the hall for ten minutes.” Use the time to collect your thoughts.

Avoid being in a position where you swear or will regret later words you used. Take notes during the meeting when you can. When the meeting is “going nowhere” say so. Propose another meeting.

When substantial gain is made during the meeting, write a follow-up letter clarifying what you think was decided or happened. “CC” all the attendees or others who are interested in the outcome.

5. Phone calls

Write the date, time, name and title, and telephone number of the person you are talking with in the notebook. Write ahead of time the questions you will ask leaving space for the answers you get.

Realize that a phone call can be forgotten — or denied. Talk to the ‘power’ person or the person who has the critical information you want. It may take a while to get to the person who has the authority to state policy so persist in trying to reach a person of authority.

Call an agency and say, “Who is the person responsible for putting together the IEP team?” “May I speak with the policy expert on the Medicaid state plan?” “Who is it who determines the transportation schedule for school buses?” “Who is the expert on assistive technology funding in our school district?” If you don’t know what an IEP is or if you don’t know if your child is eligible for Medicaid, that is the call you need to make tomorrow.

When you make a call, leave pleading and begging behind. Simply say, “Hello. This is Matt All calling for Mrs. Andersen.” Period.

You can say, “My son can’t see very well and has cerebral palsy.

What are the steps I must take to get him enrolled in an extended school year program?” or “How and where do I apply for Social Security for my disabled son?” Be as direct as you can with your initial request. You do not need to explain your story or request in detail to everyone. You don’t have to give the medical terminology for your child’s disability. Just keep it simple and straightforward.

And keep it to the facts. It is easy to begin to explain the ins and outs of what you’ve been through: however, save that for your friends, family and support groups. Deal with administrators and service delivery people in a businesslike manner.

When the person is not available, simply say, “Please ask Mr. Apple, Supervisor to return my call. My number is –.”

When a message is requested, and you may volunteer to leave one as well, make it strong and to the point. “I am calling about the bus picking the kids up an hour early each day” or “I’m calling about the teacher who called my daughter ‘retarded’,” or “I’m calling about my son’s application into the summer recreation program.” Ask when you can expect a return call. Write that down.

When you don’t get a return call when you should have, call back.

Call back if you don’t succeed in reaching the right person the first time. Ask, “Who should I be talking to, then?” When they seem unhelpful or to be avoiding you, write it down. Keep a record of these referrals and if they are passing the buck, say so: “Look, I’m getting annoyed. Mrs. Barnes referred me to Mr. Bath who referred me to you and now you’re referring me to Mrs. Barnes!”

When you are given approval over the phone, be sure to say thank you and ask for written confirmation to be sent to you the next day.

File this with your other documentation.

6. Use of Anecdotes

Anecdotes are stories to make a point. They are used to give examples. This is a particularly useful tool if you meet face-to-face with an elected representative or are asked to testify at a public hearing or public meeting or are writing a Letter To The Editor of a newspaper. People remember anecdotes. For example, if you want to complain about unresponsiveness or insensitivity of the school system to your child, you could talk about your child’s IEP goals and explain how they are not being implemented. OR, you could say:

“My son Michael is in regular kindergarten. He can’t talk. He uses sign language and a machine which talks for him when he pushes buttons. The teacher asked the children to bring in a favorite stuffed animal at story sharing time. Michael brought in his Snoopy, who he carries with him all the time. When it was his turn, the teacher wouldn’t let him use his voice machine. She said it was disruptive and distracting to the other children. She has not learned his signs, so no one understood what he was doing with his hands. Michael stood in front of the class, silent. The teacher and children stared at him for a while and then she instructed him to sit down. He threw himself to the floor and had a temper tantrum. The teacher told the aide to take him out of the room for “time out.” She then reported that Michael was becoming a problem child in her class and asked the principal to work out a behavior modification program.”

A story in short declarative sentences is easier to understand than going into a lot of detail and opinion.

Find a powerful story to make your point, and use it. Advocacy is its own reward and there will always be something to advocate for in this imperfect world. Accept that you cannot win all the time and that many goals may take months or years to reach. Give yourself a break now and again! Pick your battles!

You’ll have ample opportunity over the years to fight many, so choose them and space out your energy. And be creative — there is no limit on the tactics parents can choose as they advocate for what it is right for their child with a disability.

One parent may leaflet all the teachers’ mailboxes to argue for inclusion of their child with Down Syndrome into a regular education classroom and win; another parent may launch a full-scale litigation effort to win.

Different circumstances require different actions and strategy on your part. With each achievement, no matter how small, take a moment to congratulate yourself for a job well done. Have a party with your family or friends when you finally get Medicaid to pay for the specially adapted toilet seat, when you secure SSI for your child, or you get the “okay for payment” for extended school year over the summer.

Share the gladness of the moment when your child gets on the bus with his sister to go to the neighborhood school, or your young adult daughter with disability gets a job after a year of searching.

You’ll know you are an advocate when you feel like you have had to decide between being popular or being respected. In the long run, being respected will do more for your child than trying to keep everyone pleased. This might sound like I am suggesting you have to fight for everything and be combative. I am not saying exactly that.

I am saying, however, that as you work to make sure your child’s legal and social rights are won — because, unfortunately, they are not automatically provided or extended to your child — you will feel and act differently.

And it will be worth it!

It is your right, your responsibility and your duty to speak up and out!

Disclaimer:  This article is designed to increase public awareness. Its content is presented for informational and educational purposes only, and is not to be construed as professional advice on medical, legal, technical or therapeutic matters.  By accessing and using the information, you agree to waive any rights to hold the Horizon Family Solutions, or any individual and/or group associated with this site, liable for any damage that may result from the use of the information presented.

Teen autism is a spectrum disorder that has a variety of severities

At the low-end of the autism disorder spectrum is a disorder called Asperger syndrome. Teen asperger syndrome gets its name from an Austrian pediatrician who first noticed that this particular form of autism was mild, but capable of stymieing academic and social progress. Teenagers with Asperger syndrome disorder do not demonstrate the same language delay skills that others with more severe forms of autism develop. However, there are some definite limitations associated with teenage Asperger syndrome.

Defining characteristics of teen Asperger syndrome disorder

Teenagers with Asperger syndrome disorder are mainly identified by their obsessive interest in one subject or another. While the subject varies from teen to teen, the connecting thread is that the teenager wants to know everything about one subject or object when affected by teenage Asperger syndrome disorder. The desired topic is discussed almost exclusively by teens affected by Asperger syndrome disorder.

In conversations with others, and in pursuit of knowledge, one topic is almost entirely all an Apserger teen might know about. This can lead to neglecting schoolwork that is not related to the topic of interest, and can make for difficulty in carrying on social interaction. However, regarding the topic of interest, Asperger teens are remarkably knowledgeable and have a high level of expertise and good vocabulary (including formal language patterns), making them similar to encyclopedias about the topic.

Other characteristics of teen Asperger syndrome disorder

• Difficulty with gross motor skills
• Eccentric behavior
• Non-verbal communication problems
• Rituals and routines that become repetitive

Teen Asperger syndrome disorder and intelligence

Most teens with Asperger syndrome are actually quite intelligent. They have average to above-average IQs, and many of them perform well on standardized tests. However, their homework skills are often lacking, leading them to perform poorly in subjects that do not fall within the scope of topics of interest.

Asperger syndrome teens often need help remembering to do and hand in their homework and they need help learning appropriate communication skills.

While there is no cure for Asperger syndrome, teens can learn to cope with the symptoms by practicing gross motor skills to overcome clumsiness, learn how to better read non-verbal cues and by working to expand areas of interest.

Teen Asperger syndrome disorder and social interaction

Because Asperger syndrome is on the milder end of the autism spectrum, teenagers affected by Asperger syndrome disorder are not as shy as others with more severe forms of autism. Many teens with Asperger syndrome attempt to approach other people. However, because they may have problems recognizing social and emotional cues, and may be fixated on a particular subject, actual interaction is often unsuccessful. So, while they may not wish to be isolated and may seek social interaction, teens with Asperger syndrome disorder become isolated by others because of their lack of social skills and because of their especially narrow interests.

Even though Asperger teens will probably need some measure of help throughout high school, it is often possible to help them equip themselves to prepare for college, and college can be used as a training ground to further prepare teenagers with Asperger syndrome disorder for successful careers.

Asperger Syndrome Source:

• “NINDS Asperger Syndrome Information Page,” National Institute of Neurological Disorders and Stroke, National Institutes of Health.

Dore E. Frances, Ph.D.

Families can at times face special and unique circumstances.

Horizon Family Solutions, LLC

How to Build Up Your Self-Confidence and Get IEP Services for Your Child

Dore E. Frances, Ph.D. will be offering Parent Training and Information Seminars starting in March 2012.

These seminars are mainly for parents, especially those that are “beginners” in the IEP process, however, anyone wanting to learn more information is welcome to attend or schedule a seminar in your area or at your program or school.

Parents will learn valuable assertive communication techniques so that they are able to ask and answer questions in an unthreatening manner during an IEP meeting and while communicating with the IEP team, of which they are a part.

This is a very understandable and down to earth seminar, with step-by-step instructions that each parent can take with them and use.

Parents will be delighted with these seminars because they are spoken to from a parent perspective – which is very hard to find. If you would like to privately schedule a seminar for a group, this also works out very well. These seminars are a powerful way to learn how to be an effective advocate for your child.

~ Each public school child who receives special education and related services must have an Individualized Education Program (IEP). Each IEP must be designed for one student and must be a truly individualized document.

The IEP creates an opportunity for teachers, parents, school administrators, related services personnel, and students (when appropriate) to work together to improve educational results for children with disabilities. The IEP is the cornerstone of a quality education for each child with a disability.

Session One. Assertive vs. Non-Assertive – Which Are You?

“Being Assertive Is Not My Style”

Assertiveness is … Assertiveness is Not …

Assertive and Unassertive Statements

~ To create an effective IEP, parents, teachers, other school staff–and often the student–must come together to look closely at the student’s unique needs.

~ These individuals pool knowledge, experience and commitment to design an educational program that will help the student be involved in, and progress in, the general curriculum. The IEP guides the delivery of special education supports and services for the student with a disability. Without a doubt, writing–and implementing–an effective IEP requires teamwork.

Session Two. Developing Your Positives – Eliminating Your Negatives

How to Build Up Your Self-Confidence and Develop a Positive Attitude About Yourself

Let Your Body Say Positive Things About You

How to Get Off the Guilt Trip

How to Get Out of the Intimidation Trap

How to Put Down the Put-Down

How to Get Around the Runaround

When They Call You Aggressive

Can You Really Listen?

Building the Parent-Professional Communication Gap

How a Parent Group Can Help You Be Assertive

Are you a Leader – or Just a Parent?

Laugh Your Way to Assertiveness

~ The IEP team gathers to talk about the child’s needs and write the student’s IEP.

Parents and the student (when appropriate) are part of the team. If the child’s placement is decided by a different group, the parents must be part of that group as well.

Session Three. Assertiveness at Special Education Meetings

When You Know It – Flaunt It

How to Assert Yourself at Your Child’s IEP Meeting

Gaining Access to All of Your Child’s Records

How to Prepare for a Successful Due Process Hearing

Is a Lawyer Necessary?

~ If the parents do not agree with the IEP and placement, they may discuss their concerns with other members of the IEP team and try to work out an agreement.

~ If they still disagree, parents can ask for mediation, or the school may offer mediation. Parents may file a complaint with the state education agency and may request a due process hearing, at which time mediation must be available.

Session Four. Assertiveness Exercise for Parents

Assertive Responses for Those Old Excuses

Repeat! Repeat! Repeat!

How to Shovel Your Way Out of those Bureaucratic Snow-jobs

How to Escalate Your Way to Services

Using the Negative to Build Your Positives

The “No You Can’t But I Can” Technique

~ The school makes sure that the child’s IEP is being carried out as it was written.

Parents are given a copy of the IEP.

~ Each of the child’s teachers and service providers has access to the IEP and knows his or her specific responsibilities for carrying out the IEP. This includes the accommodations, modifications, and supports that must be provided to the child, in keeping with the IEP.

Session Five. Assertiveness with Bureaucrats and Public Officials

Put It in Writing

How to Influence People Instead of Just Making Friends

How to Negotiate with Bureaucracies

How to Assert Yourself with Politicians

How to Stack Public Hearings to Win Your Battles

How the Press Can Help You Get Services

Others Who Are Winning by being Assertive

What if I Fail?

~ The child’s IEP is reviewed by the IEP team at least once a year, or more often if the parents or school ask for a review. If necessary, the IEP is revised. Parents, as team members, must be invited to attend these meetings.

~ Parents can make suggestions for changes, can agree or disagree with the IEP goals, and agree or disagree with the placement.

Session Six. Assertiveness Success Stories

Assertiveness – My Legacy to My Daughter

How My Daughter Changed My Personality and Taught Me to Be an Assertive Parent

My Path to Assertiveness – It Changed How I Serve Families

Sometimes Assertive, Sometimes Supportive

Time’s Up for Time Out – Legislative Assertiveness

~ By law, the IEP must include certain information about the child and the educational program designed to meet his or her unique needs.

Session Seven. Resources

Council of Parent Attorneys and Advocates

Family Resource Centers

A Parent’s Guide to Special Education Rights

Parent Training and Information Centers

Federal Agencies

Wright’s Law

~ Sample IEP forms will be presented

Dore E. Frances, Ph.D.

Founder

Horizon Family Solutions, LLC

6525 Gunpark Drive / Suite 370-335

Boulder, Colorado   80301

740-446-0188

Dore@Dorefrances.com