What We Don't Know - Can it Hurt Our Children

I have been haunted lately by the reality of what we don’t know that might make a real difference in the lives of our children and adult children.

As most of my regular readers know, Billy Ray has chronic pancreatitis, which comes with severe pain and other issues such as pancreatic insufficiency, which has similarities to diabetes. When he was originally diagnosed, I was told that it was caused by Depakote, which he had taken for a number of years for his bipolar. Early last summer he was referred to the chronic pain management clinic at OHSU. There I learned that they see many patients with Down syndrome and pancreatitis.

During research for my first book I spoke to several doctors and medical schools about how much training medical providers are actually given regarding children and adults with special needs. The phrase “touched on lightly” seemed to come up in many conversations as an example of how little actual training in special needs was provided to medical students.

According to the National Association for the Dually Diagnosed (an association for people with both developmental disabilities and mental illness diagnoses), a survey of doctors in the state of Illinois found that, out of 312 respondents (a 24 percent response rate), 95 percent acknowledged that they treat patients with developmental disabilities and 70 percent acknowledged that they had no formal training in the area.

In the foreword to Parenting Your Complex Child, genetic counselor Kate Crowe alluded to the problem as well:

“Medical researchers don't study many complex children. As health care providers, we depend on the published research to inform us so we may provide advice and guidance to families. If a patient is "complex", and doesn't fit the description of a single condition described in the research literature, we are left with little to share. Teaching parents to observe and problem-solve empowers them to fill in the information gaps for themselves.”

In Billy Ray’s case the enlarged pancreas, which may have been the beginning of the pancreatitis was not found easily. He had been sick for a couple of months and nothing definite enough to be causing his rapid deterioration could be found. I have written about that experience here.

As shared in the post linked above, when I took Billy Ray to the emergency room in July 2005 the emergency room doctor wanted to send him home on increased pysch meds. The cause of his severe pain was only dealt with after I advocated strongly (read that blew up) and further testing was done.

The more we know about his medical needs the more we are able to deal with his behavior issues. It has certainly made a difference in his life. I can’t help but wonder with doctors not being given enough information about things that might be common in certain disabilities and parents having no way of knowing, how many behavior problems are being treated with pysch meds (which don't really work anyway) when they are really medical issues.

Until next time,

Peggy Lou Morgan
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Parenting Your Complex Child
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Parenting A Complex Special Needs Child
Parenting An Adult with Complex Special Needs
Peggy Lou Morgan
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Technical Glitches

I have been trying to follow the publicist assistant’s advice to combine the blogs for both of my books into one blog. However, I have been having great difficulty figuring out how to get the feeds to various places switched. For example, Wellsphere feeds one blog to their Autism community and the other to the Down syndrome community and they can’t feed the combined blog to both communities. I thought I had it fixed for Amazon Kindle readers but apparently not.
For now I am going to post on the two blogs and post both of them on the combined blog as well. Hopefully, I will get things switched at some point be down to one blog.

Thanks for your patience with me.

Peggy Lou

Changing Blogs

Hi Everyone:


I have sort of built myself into a box with having multiple blogs particularly for my two books. Somethings seem appropriate to share with parents of younger children and parents of older children as well. I have decided to come both Parenting A Complex Special Needs Child and Parenting an Adult with Complex Special Needs into a blog just by my name and not dedicated to just one book that link is Peggy Lou Morgan .

Additionally, some of you have been following my blogs on Amazon because they were all being fed there. I wanted to let you know that Amazon is changing their Amazon Author Connect Blogs and they will no longer be in the separate blog and on the detail pages for both my books. They will have Author Central which is presently under construction and hard to find. You can still get my blogs on Amazon at this link. Amazon picks up most pictures but does not pick up any video I put on the blog. If you can't get referenced video just click at the bottom of the post of the link to the blog it was fed from and you will get to the original post with video and pictures.

Until next time,
Peggy Lou Morgan

Blogs: Peggy Lou Morgan and Lighthouse Parents
Websites: Parenting Your Complex Child , Lighthouse Parents and Peggy Lou Morgan
Amazon Author Central
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Wellsphere
Tangle (formerly GodTube)

Building Relationships that Bring Joy and Protection for Your Child

I have been posting stories of abuse and literal torture on my other blog here and here. While this post goes along with the idea of protecting children and adults from that kind of abuse I decided to put it on this blog where more parents of young children would see it.

I believe the best protection for children and adults from abuse is to have relationships with people who will stay involved and aware of what is going on in the life of your adult child. As stated in those posts some have said they do not have time to establish those relationships. It does take time but adds immeasurable value.

Billy Ray’s best friends, Donna and Max, are an important part of his life. I know that if something happened to me they would be calling him, visiting him, and checking on him just as they do now. The relationship he has with them is not just for his benefit. I know that he touches their lives too. In fact while they are on vacations, etc. they send him cards that say how much better their lives are because he is in it and gifts that have so much thought in them that I know he is always on their minds.

Donna makes the high fiber cookies that Billy Ray needs for regularity. They are the same recipe that I make (off the oatmeal box) but he will eat them better if Donna makes them.

These pictures of Billy Ray blowing out the candles on their birthday cakes show the affection they have for him.

They are always on his mind too. He has a picture of Donna and himself on the refrigerator. He looks at it several times a day and talks about her each time (see picture below).

Recently I was having a conversation with another friend about Billy Ray’s relationship with Donna and Max. She commented that Donna and Max see Billy Ray as a person not just a “special kid” as others might. This is the kind of relationship you want for your child.

Thinking back over the developing friendship there seems to be some key aspects that have made it work:

Donna and Max do care about Billy Ray. They are also willing to deal with a bit of discomfort at times. (For example, when they were here for dinner once and I started his bath before they left. He started removing his shower wrap in front of Donna which was something she wasn’t prepared for.)

It seemed important for Billy Ray to be understood for who he is so as I do things with him and for him in their presence I would explain why he needs things a certain way.

As they began to know him better, Donna felt comfortable asking questions that helped her to understand him even better.

This relationship impacts Billy Ray and provides a sort of protection; however, it also contributes a lot to community acceptance. People are always telling me that Donna talks about Billy Ray constantly. Billy Ray, as seen through his friend’s eyes, is even more accepted as a person. Others are willing to take the time to get to know him because of the stories she tells of fun things he has said or done.

While there is not time to form a lot of relationships for your child is good to have more than one. Donna and Max are closer to my age than to Billy Ray’s age. I know that they will always be there for him if they can but someone closer to his age would be a great back up.

Until next time,
Peggy Lou Morgan

Blogs: Parenting A Complex Special Needs Adult and Lighthouse Parents

Amazon Author Blog

Websites:
Parenting Your Complex Child, Lighthouse Parents and Peggy Lou Morgan.com

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My Wellsphere Page
Lighthouse Parents on Tangle

Parenting Your Complex Child Yahoo Group

Billy Ray Meets Tonka (future service dog)

We stopped on to meet Tonka on the way to a Mother's Day weekend trip. I couldn't wait to share some pictures with all of you.

The sun was bright and it made it hard for Larry to see the pictures he was shooting. He shot over 50 shots. There were smiles and expressions that he couldn't catch with even that many tries. Billy Ray was elated.

More to come when Tonka gets old enough to come home to Billy Ray.

Until next time,

Peggy Lou Morgan

http://www.peggyloumorgan.com/ for a complete list of my websites and blogs

Big Shoes (Paws) to Fill - New Service Dog

It is not clear to me what the various feeds pick up. I know that my Amazon blog is not picking up the video but I'm not sure about these pictures. If you can't see the pictures just click on the link to the blog it's from and it will take you to where you can see the pictures.

This is Tonka (yellow lab, named because he is the biggest and most fun of the litter), who is 9 weeks old. He is going to become Billy Ray's service dog when he is about six months old. We are going to visit him this weekend.

This time we are going to do things a little different because of Billy Ray's health and my schedule. The breeder (whose name and contact information I will reveal when she is ready for that) is going to do more of the basic training before I start working with Billy Ray and Tonka at about six months old. As I have been taking notes and talking to the breeder about what is important in terms of training, I have been thinking about what Billy Ray (and all of us) has gained from his dogs and what we have learned.

Dogs have been important to Billy Ray. His first experience with a dog was in foster care before we adopted him at 15 months old. He was a little much for my older poodle on placement so the veterinarian selected five month old Katie for him.

Together Katie and Billy Ray, then about 4 years old, went through basic dog obedience training and he learned how to handle her pretty well. He had her from the time she was 5 months old until about 14 years old. She was a pet not a service dog but she made a real difference in his life.

As Katie was aging, I began to look at a replacement. I looked into the idea of a service dog but couldn't find appropriate trainers. Somehow I found Dana PawsAbilities in northern Washington state. Her organization is primarily obedience training not a service dog trainer but she took time on the phone to give me tips for making it work. I remember the first thing she advised me to figure out was what jobs the dog would be expected to do for Billy Ray. I don't know why Dana didn't get impatient with me given it wouldn't benefit her business but she was always helpful.

Thanks to Dana's help and Carolyn Jones, 4-H leader and friend, who found us what was to become the perfect service dog for Billy Ray, we had several good years with Sheba. We took Sheba almost everywhere with Billy Ray. His support staff took her with him to his school program and other activities. The picture below is my favorite - he is shredding papers at Silver Falls School District Office and she is right there comforting him.

Unfortunately, Sheba, while perfect for Billy Ray had one flaw, she loved to chase cars along our fence when they drove onto the neighbors property. She injured her leg. We treated it for a long time and it was felt that surgery wouldn't help. Eventually she couldn't work with Billy Ray but remained a pet until there was nothing else that could be done to keep her comfortable and we put her down.

Enter Penny Lane who was in foster care with Heartland Weim Rescue and we heard about her through our friends Cliff and Shela Nielsen . Through a chain of events and the fact we had a friend's son coming home from college in Olathe, KS and could transport her Penny Lane came to be Billy Ray's next service dog. She was the dog no one wanted and was at risk of being put down because she had problems with her ears and was partially deaf. I had provided similar care to Katie when she had problems with her ears so was not frightened away from Penny Lane. However, what I didn't realize was that Katie was well trained before her ears became and issue and we needed to provide more extensive training to Penny Lane because she was a service dog whereas Katie had been a pet. Training for Penny Lane has not been very successful and she has become much more of a pet than a service dog.

However, Penny Lane has contributed to Billy Ray and to me in ways I could have never trained her to do. We got her about a year before Billy Ray had the health crisis and ventilator episode shared previously. When he began go through breathing changes which have never been thoroughly diagnosed but he appears to literally stop breathing and Penny Lane somehow senses it and comes to get me. I can sleep because I trust her to monitor it. I wrote about it here .

Below is a picture that shows the relationship between the two. He doesn't really want her to sleep on the bed because she lays on the covers and he can turn over as well. However, this one morning he was dressed and went back to bed and crawled up beside him on his other pillow. He covered her up and fortunately this was one of those Kodak momemts I didn't miss.

As a rescue dog her exact age was a guess. It was suggested that she might be 2 years old but our vets have suggested she was probably 4-5 years old when we got her nearly 5 years ago. She has had multiple health issues the entire time but she has been manageable. Her weight has been a constant struggle and it was just believed that Billy Ray gave her too many bites (which he does) but it was finally discovered that she has a thyroid problem and we have been treating that. However, recent tests performed show that she has liver issues as well. She is being treated for both and is on a special diet for the liver issues. Her vet advised that we would probably be able to maintain her another year but two years was stretching it.

Thus, it seemed time to consider a new service dog. There are now service dog agencies that we could work with but because it is used a specific way for Billy Ray and I want to work with it myself, we are going through a breeder we know. I hope to share on pictures and video blogging when we get started training.

Until next time,

Peggy Lou Morgan

for a complete list of my blogs and sites see www.peggyloumorgan.com

Our Latest News 4/6/09

Hi Everyone:


There is a lot going on right now and I have wanted to touch bases with you for a while.

First, Billy Ray is somewhat the same as when I last posted. He still fights chronic pancreatitis but we are learning to anticipate pain and catch it as early as possible so he doesn't need the stronger medications for pain. The surgery (Nissan) done in September 2006 which sort of fixed his high degree of acid reflex was checked last week and still in place but he is getting reflux again and it is the cause of periodic choking episodes.

He has good news and bad on the service dog front. The present service dog is experiencing health problems of her own and will have to be replaced within the next year. I have ordered a Yellow Lab puppy which he will get at the end of summer and we will start training her to work with him.


Parenting an Adult with Disabilities or Special Needs seems to be getting pretty good reviews already. I am truly pleased by them. Here are two: Autism Learning Felt and Specialchildrenabout.com .

Thanks to Amazon, I am able to combine the feeds for my blogs in one. If you'd like to read all the recent posts for this blog and Parenting a Complex Adult you can go to the Amazon blog and get them in one location.

Until next time,
Peggy Lou Morgan
www.peggyloumorgan.com for a complete list of sites

Communication by Behavior (Reading the Signs) Revisited

This post is revisiting a topic I have covered several times in different ways since the beginning of this blog in 2005. It seems important to touch on it again because several parents have emailed about their frustration relative to their child’s behavior. A common line is “we are held captive to his behavior” or “it is impossible to plan anything because we never know she will respond”. Many want to know what medications Billy Ray takes or what medications will treat behavior problems with their child.

I am not anti medication but we use the very minimum necessary. I have found over the past 24 years of being Billy Ray’s Mom (he was adopted at 15 months old) that medication is a last resort for behavior issues. What works for us is reading the signs relative to his behavior. Two posts on this topic are Change is Coming – Reading Your Child’s Behavior and Reading Signs in my Complex Son. There are many others under the label Communication by Behavior.

When you allow your child to show you what he needs to feel safe and comfortable and adapt his environment, schedule, etc., etc. as close as possible to his comfort level life becomes much more comfortable for him and for the whole family.

Some have written that it is not fair for one member of the family to have things his way. I do understand that feeling. For me, it came to a point that I learned what Billy Ray can and cannot incorporate or understands. His logics are not mine. If he is confused by an aspect of the routine or environment we can get stuck and ruin a day or even longer periods of time. By doing things the way that he can understand or accept, it changes the flow of whatever we are doing. If that means we have to do things differently than another member of the family wishes but we will not get stuck it might well be worth it, depending on the situation.

Others have written that they don’t have time for the documentation, etc. suggested in Parenting Your Complex Child. My response is that being stuck with meltdowns or behavior issues takes more time than we realize. When we learn to read the signs, adapt to the child’s needs and communicate the child as he or she is to the professionals involved, it changes family life as well as the child’s. It takes time and initially a lot more energy than we might think we can muster but in the end it saves time, energy and frustration. It is really a choice of how you will spend your energy and that of your child and how much frustration you can cope with.

As aside, I am not keeping the blogs up the way I want, slower to answer email and moderate comments because I am getting more email and comments these days. I have decided that is partly my fault because many of the things I would respond is already on the blogs but hard to find because it has been archived by date. I changed the blog template today and am in the process of labeling every old post by categories. If you have any suggestions or comments please let me know.

Until next time,

Peggy Lou Morgan
For a list of my blogs and websites see www.peggyloumorgan.com

Great Article re Siblings of Children with Special Needs

The New York Times Well blogs had a piece on a report done by National Public Radio on Marissa Skillings, a 15 year old whose 11 year old brother, Andrew, has Asperger’s syndrome.

It is great to see stories like this one that bring out the struggle Marissa (and many others) experience as siblings yet clearly show that she loves her brother as he is. It is not easy to live with his noise and meltdowns but as she says if he was different he wouldn’t be the Andrew she knows and loves.

Since so many people with disabilities were housed in big institutions for decades society really doesn’t have much understanding about what life is like for the person or her family. As we share with the media or just friends what we experience, including the joy, it so enhances awareness and acceptance by the community.

Until next time,
Peggy Lou Morgan
Author of Parenting Your Complex Child (AMACOM Books 2006) and
Parenting an Adult with Disabilities or Special Needs (AMACOM Books January 2009)www.peggyloumorgan.com (for a complete list of websites and blogs)