Doctor-Patient Relationships and Documentation

I felt really affirmed by Billy Ray's medical provider, Brice Stanley, recently.

Yesterday he came in just before seeing Billy Ray to get a business card to give to another parent. It made me feel good to think he values the documentation methods so much he would suggest them to other parents.

Additionally, in a recent email he made comments about my documents which I think support the benefit of doing them. I also think they say a lot about Brice as a person and as a medical provider. I am sharing them here with his permission.

"I am excited to see** your son. Why? Because... despite the enormous challenge he presents each and every visit I find a unequalled satisfaction in seeing him trust me. I feel content to see your well-done behavioral logs that make my job so much easier. I also have a strange satisfaction in knowing that we have made some difference in his perception of daily quality of life when he smiles in the exam room."

"Each day that I see Billy I learn something new. A better way to communicate, or a more intuitive way to observe his behavior, or how important it is to read reports you bring. Each of these things presents a new challenge and satisfaction in my career. I look forward to seeing him because I get to partake in his well-being and LEARN at the same time."

In prior posts we have discussed the importance of the relationship with your child's medical provider. See Trusting Your Gut and Doctor-Parent Relationships and Developing the Right Doctor.

Until tomorrow,

Peggy Lou Morgan

www.parentingyourcomplexchild.com

www.lighthouseparents.com

Why Journal

In the imagined perfect world, you could walk into the office of a professional with your special needs child and they would have all the answers you need to your help your child. In the real world, that you and your child live in that is probably not the case.

I love the theme of this years Arc of Oregon conference “Get Real”. When I started writing my book I thought about calling it The Real World Your Child Lives In. Expectations of help and services can be very different from reality. Just because there are laws that grant services to your child doesn’t mean your child will get those services.

The U.S. Congress created the Americans with Disabilities Act (“ADA”) and the Individuals with Disabilities Education Act (“IDEA”). They did not necessarily fund the programs sufficiently to provide the services they mandate. A child must be proven eligible for specific services as well as able to benefit from a service.

In Doing Your Own Clinical Trials we quoted Kate Crow, Genetic Counselor from foreword to Parenting Your Complex Child (April 2006) that medical researchers don’t do many studies on “complex children”. We also shared that when asking several medical schools how much training on special needs patients medical students received the phrase “touched on lightly” was a frequent answer.

How do we wade through the frustration of getting help for our children. I will share my struggle and the approaches I created in detail in Parenting Your Complex Child. For now I want to share you with you the foundation of my system so that you can get a head start.

The foundation is the journal. It will include the quick notes – sometimes only one of two words to jog your memory because you are too busy to write much when your child is in a meltdown or you are involved in something else with him. Other times you will note observations in more detail when you are able to write.

It is like your study notes for a class in school. Your child is your professional and you are taking notes from his presentation. Because it is for your eyes only you can do it however you need to. The data gleaned from your journal can be used to demonstrate your child’s needs in documents for medical, educational, and governmental professionals. It can also be used for transitional planning and estate planning documents.

I like to say the journal is the detail. Presenting the journal itself to the busy professional does not work because it is too long for them to read in a short appointment. I create documents from Billy Ray’s journal that are in a format a busy doctor, for example, can absorb in short visits. I take the journal along so that if he or she has more specific questions than given in the summaries I provide we can refer to the journal for more detail.

The journal can be in any format that works for you. Billy Ray has a computer in his room and it is the one thing he doesn’t throw. He enjoys the screensaver pictures of his activities, family members and friends, etc. thus he is protective of “my puter”. I am able to keep the journal minimized on his computer at all times. When I am in his room while he is going to sleep, while he is dressing or other activities in his room, I am can make quick notes.

What to put in your journal depends on your child’s needs. If sleep is an issue track the naps and night sleep. If he suffers from constipation, etc. you could track bowel movements. Note any issues that a professional is likely to ask you about later.

Behavior issues are helped a lot by the journal. It will enable you to catch “triggers”. Note what was happened before a behavior, what the behavior actually looked like and how it was resolved. When you review the journal later you are able to see that if something was happening (for example, noise or unexpected visitors) it routinely triggers a behavioral. It will help you to avoid triggers to the degree possible and reduce some of the negative behaviors that result.

In a very real way you become the eyes and ears to help professionals understand and treat your child. In a recent email from Billy Ray’s medical provider he mentioned the importance of the documents I bring. I will share those with you tomorrow and hopefully get of a picture of Billy Ray and “my Dr. Brice” when he sees him this afternoon.

Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

With All This Technology - Why Can't We End Waiting

As I was sitting her working on two posts that I plan to post later this week I can hear Billy Ray going to the dryer with his support staff and the agitation because the clothes are not dry immediately.

It occurs to me that what we need in this world is immediate dryers. Parents have the same issues in some ways. Waiting to find out results from lab tests or to get the dreaded diagnosis is harder than bad news.

Last night my pastor, my husband and our friend, Dave were working on software which will enable us to share video of my presentations and basically talk to you from my website. Pastor did a sample file using video of the little girl who forgot the words from the National Anthem at the Portland Trailblazers game (you probably saw it all over the news a while ago). Here’s the file so you can see how the little video boxes will eventually be on our parenting site http://users.gobigwest.com/prcco/richlite/UPLOAD3/player.html and share our excitement at learning all this technology. Let me know how it comes across for you (is it clear).

As we look at this technology and I listen to Billy Ray’s difficulty with wait I am thinking. I wonder if we will have quick drying fabric and immediate dryers in my lifetime. Zap your clothes are dry.

Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

Monday Morning 1/30/06

I am in the midst of a project (cleaning my office – yuk) this morning but want to take time to update you on a couple of things.

First, Billy Ray’s transition to larger clothes is going fairly well. Yes there have been a couple of meltdowns but the house is still standing. Certainly it could have been much more difficult to get his ill-fitting things away from him. It is very satisfying to see that it works when efforts are made to do something in the way he needs to experience it.

The camera chip apparently needs to be replaced. We will go into Bend tomorrow to get a new one and hopefully post some pictures of Billy Ray in his new clothes later in the week. I also want to take a picture of Billy Ray and Brice Stanley, his medical provider, when we see him on Wednesday. I got a beautiful email from Brice about how much he enjoys Billy Ray and I hope to do a blog post with part of it and the picture Thursday or Friday.

Last week I was talking with my editor, Ellen Kadin, at AMACOM Books and sharing that my pastor, Richard Lighthill, had come up with some wonderful software to enable me to be more supportive of parents I can’t get to personally. I embarrassed myself by saying my pastor is a nerd. Then I corrected myself by saying a nerd like Bill Gates is a nerd. He is such a computer whiz and understands so much more than I do about computers.

I am so excited with the software Pastor Richard found. It will enable us to videotape presentations I make, record things we do with Billy Ray or even just sit at my desk and chat with website visitors. Recordings will be put on my parenting website for viewing and comments can be made here on the blog. I will keep you apprised of our progress in getting it ready to go. In the meantime, if you have suggestions or questions you would like me to address please email me.

Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

Billy Ray's Closet Cleaning and Shopping Trip

Billy Ray’s planned closet cleaning and shopping trip went very well. I am so grateful to Keddie Wanless and the folks at Corral West Ranchwear for making it successful.

As I have been sharing Billy Ray has gained so much weight because of thyroid issues, his recent diabetes diagnosis and a new medication for his bipolar. His clothes are like a security blanket – very hard to get away from him even if they don’t fit. There is no way to reason with him that they will no longer fasten.

I thought and practiced the lighthouse concept for several days about how to get the ill fitting things away from him without aggressive behavior. I thought about the way kids will do things for others when they won’t do it for their parents. I asked our consultant friend, Keddie to help.

We also know that if we take Billy Ray into a store with lots of attractive nuisances (meaning things that won’t fit or cost too much) or is unlikely to have what he wants we are asking for a meltdown or aggression in the store. Thus, my husband, Larry and I did a pre-shopping trip on Wednesday. We went to one Western store and discovered that they didn’t much selection of the part leather vests (like John Wayne in the movies) but they did have a lot of them that were fancy and far over our budget. Then we went to Corral West Ranchwear and found that they had much more of the type of things Billy Ray would be looking for.

During our pre-shopping Larry and I went to a leather outlet store in Sisters, Oregon which has all kinds of stuff for $20.00 or less. We bought a leather vest for $10.00 which he likes and a “cowboy hat” for $20.00 so we saved at least $70.00 by doing that and it also helped transition into today.

We can’t cram too much into his time between dinner and bedtime or he is up all night. Larry and I planned out dinner in advance and he put it together last night while Keddie and I went over everything in his closet with Billy Ray. I stepped back as much as I could and let Keddie work with him knowing that he might co-operate best with her. He agreed to removal of many ill-fitting or worn out items from his closet and they were carried out in boxes to be out of sight.

This morning he got up in a good mood, was delightful at breakfast enroute as we had promised him. It was wonderful.

At Corral West two sales people who were more than wonderful met us. Billy Ray really related to a young man in western attire who helped us a lot. We complicated their life a bit because we came after they have done inventory and they had to note everything but they took in stride.

The camera memory chip gave us the error message “card unreadable” so the pictures were all lost no matter what we do. I got several shots of Billy Ray looking the mirror while touching various items of clothing he was trying on. I so wanted to share that with you but it isn’t going to happen.

There have been two incidents of looking for things that were removed last night. In one instance we had a meltdown but I was able to redirect the situation after awhile. In another one, I told him what he was looking for had been taken to storage because it didn’t fit anymore why didn’t he look through his new things. He did and all was well.

What could have been a disasterous day worked because we throught, prayed and tried to understand what he needed to get the job done. Perfection NOT!! However, it was much smoother than it could have been.

Until Monday,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

A Timesaving Tool

In Parenting Your Complex Child I shared that I use "flags" and color coding to make preparing the documentation for professionals simpler and quicker. After the manuscript was submitted I walked into Staples and found the new flag pens. No I don't have any financial interest in 3M who makes the flag pen or Staples. However, I did want to share it with you as you set out to start your journal because it is such a time saver for me.

As you journal or when you review it have a color code for each item you are tracking. For example, yellow for medical issues. Highlight the note and put a little yellow flag on the side of the page. The flags on the side of the pen can be changed so that the color of the pen and the flag are the same. The flags are refillable.

Just a housekeeping note, tomorrow I will take Billy Ray shopping for bigger clothes because of his weight gain. I am going to wait to do the blog in case I can get some pictures to share with you.

Until tomorrow,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com

The Job of Parenting a Complex Special Needs Child

The other day bank teller apologized because another teller needing help interrupted her. I told her I was the mother of a complex special needs child so I understood multi-tasking. Funny how little tidbits of conversation stay on your mind for days. For days since then I have been thinking about the multi-tasking we do as parents of complex children.

This morning as I was walking through the living room there was a television interview on with a doctor about a book he wrote on marriage. In all fairness I have to say I am pulling this totally out of context because I heard very little of the interview. He was saying that you have to treat it like your job and apply the same level of effort to making marriage work.

It is the same way for parents of complex special needs children. We can’t relax and enjoy our children as much as we would like. We have to develop understanding of the education process, a variety of medical conditions, medication side effects and governmental programs. Then we have to figure how to present our child’s needs just as someone giving a presentation.

We become the lobbyist (advocate), the secretary, interpreter and caregiver not to mention breadwinner, chief cook, and bottle washer.

Applying business principles to our multi faceted job of raising our children does help get respect and results for our complex children. I will talk more about this in coming blog posts and in Parenting Your Complex Child.

Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/