How to Tell the Symptom Story

Presented by: Wendy Lowe BesmannOctober 19, 2013NAMI Maryland Conference

My name is Wendy Besmann. Im the mother of a son with autism and bipolar disorder. The Road Map training well discuss today is based on my workbook Team Up for Your Child and is the first of two ROAD MAP presentations. In longer workshops ROAD MAP uses excerpts from Team Up for Your Child as a textbook. This training is all about finding simple, practical ways to get the services a child needs WITHOUT getting overwhelmed by a complicated health and education systems. 1ROAD MAP training is based on the workbook Team Up for Your Child: A Step-By-Step Guide to Working Smarter with Doctors, Schools, Insurers, and Agencies (by Wendy Lowe Besmann, Melton Hill Media, 2008,2012) Available in Spanish as Colaboracin: Lo mejor para su hijo (2013).

2ROAD MAP can help you.Find your way through confusing systems to get the help your family member needs.

Get the respect, attention, and efficiency your family deserves.

ROAD MAP is all about helpingothers to help you and your family

Whats the ROAD MAP? Its a navigation device that tells you how to find your way to better services for your child. Suddenly weve landed in this strange, scary new world of dealing with a mental health or developmental disorder. How do we, as parents and other family members, settle in for the long haul of solving problems and helping things get better? The systems we have to deal withfrom mental health centers to schools to insurance plans and social agencies--can have really confusing rules and processes. To keep from getting lost, you need a plan for making sure the people you meet in this strange new world understand The Big Picture of your childs strengths and needs. You need them to and work like an effective team of service providers--and the plain fact is YOU, as the parent, are the only one who can make that happen.

The ROAD MAP gives you five simple, practical Routes to working smarter with these professionals so they can do their best for your child. 3

Finding the New NormalWhen a Family member has Problems Parents/caregivers can feel stressed out, angry, confused, scaredand sometimes we feel absolutely OVERWHELMED.

Finding the New Normal for your family is all about mobilizing the STRENGTH and SUPPORT you need to get help WITHOUT getting overwhelmed. YOU CAN DO IT!

4When a child has serious behavioral issues, the parents world is turned upside down. in this new world, most of the ordinary rules for raising kids dont seem to work. Somethings wrong, but you dont know why or what to do. Youre stressed out, angry, confused, and scared.

At first, you might hope the problem will just go away. You think:Maybe theres not enough discipline in this house. Maybe its a phase. Maybe its because we moved...got divorced...had a big change in our lives. Maybe its the teacher. Or those kids down the block. Maybe everything will be okay if . . . ( fill in the blank).Still, the tension is always there. Who knows what will set off the next crisis? You worry about what will happen in the future. You worry about all the simple, fun things your child is missing. As time goes on, you start to feel cut off from that other world of normal families whose kids seem to act in ways that other people understand. At age three our son was diagnosed with autism and bipolar disorder. For the next dozen years, life in our house was tough. Day after day, we coped with a child who would suddenly explode in a fit of scratching, kicking, and biting. He couldnt hold a real conversation, couldnt have friends. He spent a week in a psychiatric hospital. We jumped every time the phone rang on a school day, because it usually meant bad news. And like most such families, we grieved for the normal life we couldnt have.Little by little, something changed. We learned to reach out for help. With good treatment, our sons behavior improved. We learned ways to enjoy ourselves, and to make the hard parts a lot easier. Like so many families who share this struggle, we learned that our job was to build a new kind of normal that makes sense for the life we live. Finding the New Normal means mobilizing all the strength and support you are going to need. It takes work, but it doesnt have to be overwhelming, I promise!

Finding the New Normal

Can mean learning to work with a team of professionals and systems that may not see The Big Picture of your family members strengths and needs.I only see your family member during a short appointment at my officemaybe during a crisis. Pretty limited view from here!

5A huge part of Finding the New Normal is coping with a childs need for behavioral health services. Behavioral healthalso called mental health-- is a way to describe a persons emotions, actions, and ability to manage everyday activities. A behavioral health problemwhich may also relate to a developmental disorder such as autism--can of course affect your child at home, in school, or in many other parts of life. Thats why your childs team may have a lot of members. These may include doctors and therapists, teachers, health workers, or a case manager. Other members of the team may work for government agencies, the school system, or an insurance program. You might deal with some of these people only a few times and deal with others for many yearsbut the main point is, each one only sees part of your childs life and behavior.

That is why--No matter what titles these professionals wear, the real manager of this team is YOU, the parent. Our health and educational system can be so disconnected that the other members need YOU to make sure they work together and understand The Big Picture of your childs strengths and needs. Each professional helps with different parts of your childs situation. Quite often they arent able to talk with each other very easily. YOU are the only one who takes care of the whole child. That doesnt mean you have to run everything or know everything. You cant be an expert on every part of your childs treatment or education. Your job is to keep track of The Big Picture and make sure everybody else sees it, too.

Most children dont improve very much unless their families take an active role. in fact, the best way to get through this strange new world is by learning how to work with your team. All you really need to start are the right pathways and the will to keep going.

Sharing The Big Picture

I may know why a behavior happens, how my own system works and how our system can help.

But IM the one who sees THE BIG PICTURE--what happens everydaywhat other providers are doingand what I want for my familys future.Families can also gather and share information from their Circle of Support!

System providerswhether they are doctors or case managers or teachers or just a voice on the customer service linetake home their paychecks because they are trained to do a job and be experts about something. They may know a lot about their systems, their services, and how they can help your child. You really want that help! However, only YOU, the parent, sees that child in different places, on different occasions, and at different time periods in that childs life.

At one point, I used to take my son to the psychiatrist every few weeks in the late afternoon. As soon as he sunk down into the doctors big soft leather couch, he would go right to sleep. The doctor might well have thought This kid is highly overmedicatedwe need to cut way back. However, the doctor and I had developed a good working relationship, and so he took my word for it that thirty seconds after we got back in the car, my child would be bouncing off the walls and demanding a snack. I really helped that I could share The Big Picture. I could tell that doctor, or the teacher, or some other professional what my son was like as a baby, how he tended to act under heavy stress or at a birthday party or with a sitter, what made him melt down and what motivated him to do his best. Doctors, therapists, and teachers really rely on this information in order to make decisions that affect your child!

As my son got older, we developed a Big Picture for his young adult life. This included an independent apartment in a safe neighborhood where he could walk to shopping and take the bus to a part-time job. Time and again, I had to remind people on the team, How does this (therapy, or plan, or goal or whatever) help my son get to The Big Picture? This helped us focus on the skills and supports he needed to make that picture of young adult life a reality.

6Whos on the treatment team?The professionals on this team are often called Service Providers or System Providers.

A childs treatment team can include anyonefrom the primary care doctor to the cafeteria lady--who plays a role in helping your child recover or begin to function well at school, at home, or in the community. It helps to start thinking of them as team members who all need to move toward a goal (The Big Pictureor even this years Big Picture)-- instead of just a disconnected bunch of service providers and assorted paper-pushers who pop in and out of your life. And when we start thinking of it as a team, we can keep in mind that we are also team memberswith rights and responsibilities for getting things done. YOU and your child are also part of the teambecause not much will get done if the child isnt willing! The older children get, the more they have to be directly involved in planning and implementing that Big Picture. Watching their parents act as equal partners with professionals is the way our children learn an essential skill they will need for the lifelong maintenance of a chronic mental health condition. For them, it is also the New Normaland we can model how to handle it!

(Refer to Medical, behavioral, and developmental health specialists, pp. 13-14.; Choosing Someone to Evaluate Your Child, pp. 27-28.)

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Five Routes of the ROAD MAP

Keep good recordsbut use shortcuts. Learn key words that open doors, and tell a clear symptom story. Ask questions that are likely to produce the most useful answers.Stay alert for common mistakes made by people and systems.Help all professionals who serve your family stay informed about treatment progress and life changes.

8OKAYwe are hunkering down to life in The New Normal, and we know our job is the share The Big Picture. How do we cut this job down to size? Thats where the Five Routes of the Road Map come in. These are five simple, practical skillsmore like habits, reallythat do wonders for Getting It All Together without getting totallyheres that word againoverwhelmed! Lets look at the Five Routes [READ LIST]. You may have noticed that none of this is rocket science. Its just common sense. Thats what makes it work.

1. Keep Good Recordsbut use shortcuts.

I keep paperwork organized and available for appointments, meetings, and phone calls. At the end of the year, stick me on the shelfIm a convenient annual record of treatment!

9When you get services, you get paperwork. LOTS of paperwork. A 2-inch, 3-ring binder is the best way to keep it all together and available when you go to appointments or make phone calls to providers. Consider putting a cheap, three-hole- punched calendar (often available at supermarkets and pharmacies) in the front to record appointments and keep track of medication doses when they are being titrated (slowly built up to an effective dose for your child.) Maybe youd like a zipper pouch to keep appointment cards, pens, change for the parking meter. Heres my system: I label the binder with the month and year it was started. Then I add five tabbed dividers labeled personal data, doctor visits, medications, evaluations, school, and insurance and social agencies. In the personal data section, I have a copy of my childs insurance card and Social Security card, plus a standard Health History that includes all the basic information for those forms they make you fill out every time the child goes to a new provider. Add a few sheets of filler paper to each section in case you need to make notes. Some parents like to put the childs photo on the inside front cover. I always tell parents to use a happy photobecause service providers may not always see your child with that face. It can help them--and YOU remember The Big Picture when times get tough!

You may think of other categories and different ways to organize your binder. DO IT YOUR WAY and youll be more likely to keep using it. Its best to use this binder for a year, file it away on the shelf, and then start a new notebook. That way, youll have a convenient record of what occurred during that year. After 20 years of ever-changing medications and therapiesI was pretty glad to have a record.

(Refer to Health History Form pp. 22-25, Important Professional Contacts, p.41. Your Childs Medication Log, page 51.)

2. Learn key words that open doors--and tell a clear Symptom Story.

Insurance pays for behavioral health care that is considered medically necessary to treat symptoms.

Amazing But True: Busy providers pay more attention when you pull out a WRITTEN list! A Symptom Story is a list of the top 1-5 things that concern you about your family members health, behavior or development. It can help you and the provider decide where to focus first!

In some way, adjusting to The New Normal is like moving to a foreign country. You can navigate a lot better if you know the language. Each system has important key words that describe the process of gathering information about a problem, making a plan, and providing services. Key words also matter in determining who pays for services. For example, insurers pay for behavioral health services that are determined to medically necessary to treat symptoms of a disorder. So when it comes to insurance issues, those key words really open doors. When you use the correct terms in speaking with providers, you tend to get more respect and attention.

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3. Ask questions that are likely to produce the most useful answers.

Remember to ask about NEXT STEPS!Who..WhatWhenWhereWhyCan you please explain?Better write it down!

Most parents begin this journey with a very big question: Whats wrong with our child? What do we CALL it? We feel as if putting a label on this strange behavior will give us some power to find the magic cure. Unfortunately, its rarely that simple. Mental health centers often have a series of steps for evaluating and treating mental health problems (We have already talked about the typical first step, called the intake interview.) In many cases, youll see a number of different professionals and may not see the same people at your next appointment. Its easy to get lost in this system. Sometimes providers are so familiar with their own systems that they use abbreviations without thinking about it, or forget to mention some of the routine steps in the process.

11 4. Stay alert for common mistakes made by people and systems.Make life easier by CHECKING parts of the system where stuff often gets stuck!

Do you need me to sign a release form for that?

Every member of your team can make mistakes (including all the unseen people who process your paperwork and make decisions about things such as eligibility for insurance coverage and social agency benefits). In complicated service systems, the little mistakes made by people (including parents) really cause headaches. The referral for a service goes astray, so you have to wait extra long for an appointmentlab results dont show up on time, so important decisions are put off until the next appointmenttwo numbers are reversed on an insurance code and your claim is rejectedyou dont quite understand the instructions for titrating (phasing in) a new medication and your child gets too much or too little

ASK for copies of all labs and reports. You have a right to get them.CHECK (by phone before the appointment) that referrals and labs were received. READ all evaluations and reports carefully and ask to have any errors corrected. Errors become part of the record and are used in future evaluations. KEEP all evaluations in that years binder. You may need the evaluation done at age 5 to apply for the benefits your child needs at age 18! HAND-CARRY copies of labs and reports to appointments whenever possible. Keep your own copy in your binder.INCLUDE and up-to-date contact list in your binder so reports can be sent to other team members. If somebody has to look it up, it will end up on their to do pile and may be forgotten. By checking up you help your whole team become more efficient in serving your child.

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5. Help all professionals who serve your family stay informed about treatment progress and life changes. How should I contact you if..Something happened at school last week.The primary doctor prescribed.the youth group leader said.

As a parent, you serve as the eyes and ears of the treatment team. For a medication management visit, your child may spend as little as 15 minutes once every few weeks with a psychiatrist or nurse. A therapy session will usually be less than an hour once or twice a week. These professionals have a lot of knowledge about why children behave the way they do and how certain behaviors can change. You are the one who can tell what your child is doing most of the time. You are the best one to gather this information from other care- givers, such as your childs teacher, other relatives, youth-group leader, or childcare staff. Your job as the teams parent professional is to:

Give medications in a safe, organized way.Observe how the treatment affects your childs behaviorin everyday life.Watch for any danger signs and take prompt action to get help.Report facts clearly to the treatment team.

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Road Map 1: ReviewTHE FIVE ROUTES TO BETTER SERVICESKeep good recordsbut use shortcuts.Learn key words and tell a clear Symptom Story.Ask questions that produce the most useful answers.Stay alert for mistakes made by people and systems.Help everyone stay informed about progress and life changes.

YOU CAN DO IT!!

14Families can learn a lot from other families!

Contact Wendy Besmann at wendy@meltonhillmedia.comLearn more at http://teamupforyourchild.com

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