Single Moms

As single moms we think that we want someone to comfort us and help with our child and it is so easy to get into relationships that don't work for you, your child or both. I had been in that type of relationship for a long time but stayed in it because it did work for Billy Ray until recently and because I adored his grandkids and loved the family as a whole. I was thinking that I wish I had some perils of to advise young single moms who might be in this type of situation. Telling you to keep your eyes widen open doesn't work if the view is different than it will be in a year. When Billy Ray's Dad died he was determined to have a new Dad. There were some really embarrassing moments. I remember being in our little neighborhood restaurant shortly after Raymond died. We knew most of the people in there and everyone loved Billy Ray's charm. This night was no exception - the minute he opened his mouth the place grew quiet. He said "Mommy, Daddy died and I want a new Daddy." I told him that it doesn't happen that fast and told him the story about how Raymond and I had prayed for a long time to for a child before we were able to adopt him. I told him that he would have to be patient. A couple of nights later we were in the same restaurant and he loudly announced "Mommy you say be patient for a new Daddy. I waited two weeks and I want a new Daddy tomorrow." The whole place just roared it was all I could do not to laugh. My secretary put an ad in the singles column shortly thereafter. We didn't meet Larry until about a year later. It seemed good for all three of us and his extended family. It wasn't long until he stopped working and so on the story goes. The best that I can advise is get to know the person for yourself before too much interaction with your child. I do think there needs to be some introduction early on because if he or she can't handle being around your child you will be brokenhearted if you introduce your child after you are attached. Hard as it might be to understand this it is a lot better to be alone than with the wrong person. I didn't announce the divorce on any of my sites because of the internet stalker that has appeared every now and then. I wasn't sure that I wanted to advertise BR and I being alone. However, I have always shared with you, my readers, openly in an attempt to make available anything that will help in your journey with your child. If any of you have stories to share with others you can put them in the comments section. Until next time, Peggy Lou Morgan www.peggyloumorgan.com (for a list of my other sites)

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 http://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
http://www.peggyloumorgan.com/ for a complete list of sites

We're Still Here - 12/1/08

Hi All:

I feel a bit out of touch with a lot of you. It has been hetic. For those of you who have written I'm recovering pretty well and back in the groove more and more. We are learning to deal with Billy Ray's chronic pancreatitis and doing better at managing his pain so that he is able to enjoy life so more.

Hard to imagine that Parenting An Adult with Disabilities or Special Needs: Everything You Need to Know to Plan for and Protect Your Child’s Future (AMACOM Books) is finally coming out in January. It seemed as if it was never going to happen and now it is next month. I am even more excited because several of the ideas are even more important than I knew when writing it because of all the budget cuts and economic things going on everywhere.

I have wanted to start video blog conversations with you for a long time. In the process of figuring out how it would work we had a computer crash and had to replace a computer and now Larry is trying to figure out how to get the video editing software to work on Vista - the new computer. I'm bugging him because I am anxious to talk to you.

While the new book has much to do with adults and transition planning there are many things that you can start soon. For example, I wished I had started the form of Chronological History that I talked about in Parenting Your Complex Child (AMACOM Books 2006) much younger. The same applies to many of the skills I am teaching Billy Ray now to have his own home (as soon as we can get him more medically stable). I hope to video blog him learning new things when we get the video working.

Finally, I have gotten opportunities to communicate with lots more people through other communities on the internet which is thrilling. I am going to do posts introducing those to you within the next couple of days.

Until next time,
Peggy Lou Morgan
for a complete list of blogs and websites check out my primary website

Catching Up...5/09/06

I wanted to share a little of the past week with you and try to catch up. Several of you have written to me wanting to know how Billy Ray is so I wanted to update you on that too.

Billy Ray has been recovering somewhat from the pancreatitis but still complains of pain. Apparently part of it is the pain medication adds to his irregularity so he has been more constipated than normal. He also caught a cold and has been choking more with his acid reflux. I took him to see his medical provider, Brice Stanley, on Thursday. The cold seemed substantially better but his breathing was rattley and he was complaining of headache. Sure enough he has an ear infection. I was concerned about pneumonia so Brice ordered a chest x-ray based on my gut even though he couldn't hear it in his chest. When he showed me the x-ray he said "here's the bronchial stuff, you were right". This is one more example of how important it is to have the kind of relationship with your child's medical provider where he will listen to your "gut".

We have been treating him with an antibiotic and increasing the nebulizer treatments. He continues to be amazing. We know that he doesn't feel well but often wants to continue with his normal activities. Brice said that he isn't contagious so we have been able to allow him to do what he feels like doing.

On Saturday our church LaPine Grace Fellowship hosted a reception at the Fireside Room of Bend Nazarene before my book signing at Barnes and Noble in Bend. I asked the specialist, Dr. Masterangelo, who is treating the pancreatitis what to do about Billy Ray's eating at the reception. He said that Billy Ray could have some of his favorite oatmeal cookies and light other things that day even though we are trying to keep him low fat to help the pancreatitis.

Donna, who we will lovingly call the "cookie lady" made them special for Billy Ray. There was a sign posted that said "Billy Ray's favorite". She used to make them for him every week to help with his regularity because they are so good in fiber. The work better than laxatives for him. We had to stop that because of his diabetes and now they are too high in fat for his pancreatitis. You can see by the picture he is very surprised to see that he can actually have one of his favorite cookies.


















I was pleased that he was able to attend the reception because this was the first of my events that he was able to attend.

We are going to be home for a while as far as I know.

When I did the interview with Alandra Johnson, for the article that appeared in the Bend Bulletin last week, I was surprised at how long it took me to answer her question about what is the best part of being Billy Ray's Mom. I wrote about that in today's Amazon Blog if you want to read it.

Until next time,
Peggy Lou Morgan
Amazon Blog
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Yahoo Group

Update on Billy Ray and The Trip to San Francisco

Thanks to those of you who sent email wanting to know how Billy Ray handled our absence and how the trip went.

Larry and I got home from San Francisco about 9:30 Saturday night. We were both exhausted.

As is somewhat normal for Billy Ray he was better for the most part (except for giving Keddie a hard evening last night) while we were gone. He does that when we leave him (which isn't often) - he is just enough insecure about our being gone that it stimulates him to stay calmer.


In fact when he started showing symptoms of ADHD at 4-1/2 to 5 years old the stimulation of being insecure going to the developmental pediatrician calmed him down so much it took her a long time to diagnosis him. Some don't change.

Poor Keddie. He had been somewhat wild before we came and home. On top of that the service dog, Penny Lane, was experiencing separation anxiety with so much going on (Larry had been back and forth to be with him Mom just before and after his stepfather's passing a week before we left and Billy Ray had been in the hospital for four days, then a week later Larry and I were gone for 3 days). Apparently she kept poor Keddie awake from 2 a.m.


The San Francisco trip went really well. I am posting several pictures for you. The top one is Anna who I met through the Children with Special Needs Group at Yahoo Groups. She and her her husband, Brad, drove a whole hour in California traffic. I was truly honored by that and thrilled to meet her. The second picture was taken during the discussion just before the book signing at Barnes and Noble - Fisherman's Wharf. The one on the right is of Larry with his oldest son, Mark, during the reception. You can recognize Larry - he's the one feeding his face. Anna is in the right of that picture.

I haven't had time to edit or even look at the rest of the pictures. I will add more later.

It was such a treat to have four of our 12 grandchildren there for the reception and book signing. Sabrina is blocked behind Anna in the above picture and I didn't find any of her at the book signing but I will include one of her playing the guitar below.


Unfortunately Grandpa didn't get really good shots of them at the book signing but I wanted to acknowledge their presence. One the left is Alena and Hans. The one below is Oren.



Mary Ortega of the Arc of San Francisco was wonderful and put on a great reception - including wonderful goodies enjoyed by all. Earlier she also took me on a tour of the Arc which I enjoyed very much. I met a lot of wonderful folks associated with The Arc both at reception and at the tour of the Arc. Oscar de la Rosa of Barnes and Noble, Fisherman's Wharf did an outstanding job of making sure we had everything we needed and the set up was great.

We started out the day with an interview at NBC Channel 11. I enjoyed it very much. Laura had clearly read the book as evidenced by her questions. I loved that and felt like it gave me a chance to get some of the things out that I wanted to say. Immediately after that interview we went to KOIT radio to tape a segement that will air sometime the end of May on their Positive Parenting Program. It is on Sunday mornings. If I find out the specific time I will let those of you in the area know.


Our long-time developmental pediatrician taught me to take time to enjoy the grandkids even if Billy Ray couldn't be always involved. That has been hard to me to learn. This time we were able to take two hours and go to Mark's house as we were leaving the area. His wife, Zaida had made a wonderful brunch and we enjoyed spending time with Andon (seen to the right with Mark and Larry and me) who is 2 years old and Sabrina who will be 11 years.

We loved watching Andon drive his little Gator like the one we use to have on our farm and listening to Sabrina play the guitar.


















It was exhausting but a wonderful trip. We are hope until Thursday when we leave for The Arc of Oregon Convention in Hood River.

Until next time,
Peggy Lou Morgan
Amazon Blog
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Yahoo Group

Coming to San Francisco

We are coming to San Francisco on Friday, April 21, 2006.

If you are in the NBC Channel 11 (KNTV-TV) you can watch my interview on The Bay Area Today. The program runs 10 a.m. to 11 a.m. but I am not sure exactly what time I will be on.

Reception at Barnes and Noble - Fisherman's Wharf 2560 Taylor Street, sponsored by the Arc of San Francisco at 6:30 p.m. followed by a book signing and discussion at 7:30 p.m.

Hope to meet as many of you as possible from that area.

I will try to do the blog from the road to keep you posted on my trip.

Billy Ray is a little better today. I will keep you posted on his recovery as well.

Until next time,
Peggy Lou Morgan
Amazon Blog
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Yahoo Group

Update on Billy Ray 4/12/06

We anticipate that Billy Ray will go home from the hospital today. He is eating a little bit and the lab tests indicate he is improving. I was hesitant about taking him home yesterday until we could get him eating solid foods. Dr. Masterangelo agreed.

Yesterday he had whole wheat toast with diabetic jelly instead of butter and seemed to enjoy. For his dinner we ordered as close to a low fat version of his "everynight dinner" (chicken patty, brown rice, garlic toast). St. Charles Medical Center had a boneless, skinless chicken breast and rice pilaf available and more whole wheat toast. He probably ate as much of that as he sometimes does at home (not much) but at least he tolerated some of it.

In my life, I have consumed far more hospital coffee than anyone would ever choose. I have to say that this hospital has the best hospital coffee I ever had. Thanks to St. Charles.

I am going to write about working with inpatient experiences in a separate blog post but tonight I want to thank a couple of people who made a difference in our stay.

Graveyard CNA Tom related to Billy Ray so well and constantly checked into see if I needed something. I felt comfort to go for a 10 minute stretch off the unit - especially the night Billy Ray was difficult most of the night, because of Tom.

Graveyard supervisor Dave made a special effort to work around his limited staffing to make Tom available for breaks to the degree possible. It helped so much.

There were others who were considerate and helpful. Thanks even if you aren't named. I will write more about what helped when I get Billy Ray home and can get on my own computer.

Until next time,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Yahoo Group

Time to Practice What I Preach

First a chuckle of comic relief - for any authors reading this post beware of giving your medical provider a copy of your book because he may quote you back to you (smile) and how can you fight your own authority.

We are having a bit of rough time with Billy Ray. He was admitted to the hospital on Sunday. Now we know that he has pancreatitus which is something that we have explored thoroughly but could never verify until now. This brings up many concerns in my mind:

1) Will be able to reduce the fat in his diet enough to deal with it without a) reducing the quality of his life (since eating is his primary joy in life) and b) he might become to aggressive to handle at home if refused certain foods.

2) It is believed the antibiotics he needs for his skin infections is a major contributor to the present situation. I said to his wonderful surgeon that if we didn't treat the infections they could be fatal (as I have been taught for years) but he informed me that so can pancreatitius. A Catch 22.

3) The behavior medication that has worked more consistently and for longer periods of time than any other has to be removed because it is known to cause pancreatitius. I believe it needs to be done and am advocting for it but worry that we will find something else to work as well.

Brice called me at the hospital and pointed out several of my own methods in the past that are documented in the book. He is absolutely right. We can worry a bit but hopelessness is not where we can get stuck. We look where we are and what can we do. We review the documentation and pick ourselves up to keeping adapting and doing what we have to do.

For tonight I am weary but when we take him home tomorrow or the next day. We keep going and adapting until we work through it. We can do this.

Until next time,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Yahoo Group

Billy Ray's Home from his Procedure

We are home from Billy Ray’s procedure today. It went well with no complications with the sedation. The surgeon did find several areas of that he biopsied. Biopsy report should be back mid next week.

He needs to see an Ear, Nose and Throat specialist to check on nodules in his throat for possible surgery. He found significant scar tissue in several other areas and biopsied probably 4-5 areas. He found what thinks is bacteria so is testing to see what that is.Bottom line is he found several reasons for the pain BR is experiencing (causing the "communication by behavior"). They have tried numerous tests such as MRI's and Catscans and couldn't find it but it has continued. Hopefully they will be able to isolate and treat it now.

Thanks for the comments and email. We are home. I am off to take a nap while we still have support staff and will write more tomorrow.

Until next time,
Peggy Lou Morgan

What We're Doing

Billy Ray's favorite question is "what ya doing". I am going to answer that question for you, my blogger buddies, incase I miss a few days posts.

Billy Ray is having a medical procedure tomorrow. They are going to put a scope down his throat to see why he is having increased choking. It is planned for day surgery. Billy Ray does have a history of problems with sedation so there is always risk but we have a great surgeon.

He could have a sore throat and need a little extra care so I may not write for a day or two after his procedure.

Additionally, we are very busy preparing for some traveling and speaking. I am finding it a hard to keep up everyday with the blogs. When I don’t write my blogger buddies email me worried that something is wrong with Billy Ray. I will write most days but please don’t assume if I miss a day something is wrong.

The other thing that we are doing is getting forms put on the website that didn’t fit in the book or blank ones for you to download. It is taking more time that we anticipated. I will let you know when they are up.

Until next time,
Peggy Lou Morgan

Parenting Your Complex Child (the Book) is Finally Available

We have talked about it and dreamed about it for some long (or so it seems) but today Amazon and Barnes and Noble both say they ship in 24 hours. It feels a lot like having a new baby.

I just met with Alandra Johnson of The Bend Bulletin for an interview. She asked me why I decided to write a book. The truth is it was never my intention to write a book.

Nothing was working for Billy Ray. We had tried a residential treatment program to re-establish meds. School didn't work . The story is told more fully in the book but basically I just needed to go to a very specialized school (where Billy Ray was the head teacher and I was the only pupil in the beginning).

I remember saying to Billy Ray as though he could understand fully "it seems like no understands but we are going to figure this out if you help me." After much experimentation and frustration for both Billy Ray and me we began to discover things that made day to day life better for the whole family especially Billy Ray.

Then we had to learn how to regroup in terms of advocating so that we could demonstrate what we had learned about Billy Ray to those in a position to help educationally and the medical professionals. It was another phase of trial and error.

As Billy Ray made progress, I began to get encouragement from many of the professionals involved to write a book or speak to parents. I was initially hesitant because of the time involvement in just taking care of Billy Ray day to day. However, I started writing on his old computer at night when I had to be in his bedroom so that he would stay in there until he hopefully went to sleep.

I knew that with my time constraints I would have to have an agent. We subscribed to Writer's Market online to figure out how to do that. I read that it is harder to find an agent than to find a publisher. It took six months and a lot of polite (or not so polite rejections) to find my agent, William Brown.

William helped me hone a book proposal which he editor shopped for over a year. He found me a wonderful publisher in AMACOM Books. They have been so patient and shared my goal of sharing with other parents.

It started out to be only for parents but amazingly there is interest from some professionals as well. I was honored by comments from Billy Ray's medical provider in an email the other night: "I read two more chapters...very informative. Many things I really never thought about. I think the strength of your book is the perspective it delivers. It is truly impossible for people to consider the challenges you face."

The most rewarding comment so far was from Kate Crow, a genetic counselor, who wrote the foreword. She told me that she read the manuscript through twice because it helped her to understand the families she worked with better.

The most important thing for me in writing it was that I not tell other parents exactly what to do for their child. Books that told me exactly what to do seldom worked for Billy Ray. Each child is unique. I wanted to share methods for adapting and customizing a life for your child.

Until next time,
Peggy Lou Morgan
Amazon Blog
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Yahoo Group

Feeling Sorry for Myself...Snow, Snow Go Away

I try to keep the focus of this blog on parenting a special needs child. I know that this is why you came. Today I am too busy feeling sorry for myself to have much to share about parenting.

Yesterday when Larry and I went to Bend for a Costco trip to pick up all the things Billy Ray was out of, it was nearly 60 degrees according to his truck. Most of the snow was gone from our yard and driveway. It was spring and I even wore sandals for the first time.

It is March 25th. You are not supposed to see this view from your front door. Yes these pictures were shot this morning.

My parents moved to Portland, Oregon from Weiser, Idaho when I was seven years old. We had experienced snow in Idaho so I didn't get all excited about not having it in Portland like the natives did. Portland was not as experienced at dealing with it when it did show up and it would freeze more easily. It became more of anonyance to me than the fun from childhood.

Larry loves the country and the mountains and Billy Ray and I love Larry so guess where we have lived since being with him. Billy Ray loves the outdoors and animals but hasn't been very impressed with snow. Larry has turned Billy Ray into a country bumpkin. This city girl has come along kicking and screaming.

Billy Ray loves the country but is not impressed with the snow. It doesn't bother him but it is not something he wants to go out and play in.

I love the people of Central Oregon so much. You couldn't ask for a better place to live from that perspective but I hate the snow!!

Until next time,
Peggy Lou Morgan
Amazon Blog
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Yahoo Group

Back Online

If you came to the blog yesterday you may have wondered what was going on. There may have been a message that said “access denied” or “under construction”. Apparently something called a “filer” went out and Blogger had to transfer all the files that were stored on the “bad filer” to the new one.

Before the filer went out I discovered that several of my past posts had somehow disappeared. I went to the blog to get the link to quote in current posts and the link was there but the post has somehow disappeared. I am going to have to take a look now and see if everything is still there.

I wanted to tell you that if that happens again to try reading the Blog on my website. There is a feed to there. Sometimes it will work when Blogger is down.

I wanted to also give you the link to a calendar page I created on the website so you will know where I’ll be.

My Amazon Blog is now up on the book detail page. I will be writing on there every week or so until I see how much interest there is. I am still learning about how it is supposed to work.

Until next time,
Peggy Lou Morgan
Parenting Your Complex Child Yahoo Group
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Amazon Blog

That Face - Billy Ray's Bowling Expressions

Yesterday while I was taking care of myself in an afternoon with my husband, our consultant friend, Keddie Wanless, went with Billy Ray and support staff, Ron, to the LaPine Bowling Alley. Ron said that Keddie has caught my camera bug. She has been helping me update Billy Ray's visuals and snapping lots of pictures.

Yesterday she got lots of shots of priceless expressions from Billy Ray that I can't resist sharing with you today. He seems to intense about his bowling.

He is very proud of his accomplishments too. He is actually doing very well - an amazing number of strikes and spares.

Keddie and I have been trying to instruct Ron on enthusiastic praise. The week before I modeled it for Ron. As you can see he appears to have gotten the idea now.

I am in the process of preparing a slide show to use with my projector and run when I am at booksignings, etc. to show examples of adapting. Let me know which one of these you think makes my point best.

Okay, Blogger you have me whipped for today. I have four times "fixed" it so that it didn't break up my signature - half beside the picture and half below. If it does it again I'm going to leave it that way and hope my blogger friends will understand.

Until next time,
Peggy Lou Morgan
Parenting Your Complex Child Yahoo Group
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

Seeing The Light at the End of the Tunnel

The past year has been a confusing one read Billy Ray’s “communication by behavior” because there were so many things to untangle. Parts of these events have been shared partially in prior posts. It will be easier to follow the chronology and share our joy at making progress to be a bit redundant.

Larry and I made the decision in 2003 to sell our house and move to a cheaper property in a cheaper community so that I could be at home with Billy Ray. We knew that moving Billy Ray would create some issues for him so the decision was not an easy one. We have support staff weekdays but Billy Ray’s medical issues frequently require my constant involvement. Additionally it is hard to maintain staff – a problem experienced by many families with complex children even if funding is available.

In November of 2004 we accepted an offer on our house. Just a few days later, I got the call that Parenting Your Complex Child was accepted for publication. We were elated and stressed by both of these happening at once. There was a house to find, move in only 40 days and a manuscript to finish.

Just as the manuscript was finished and sent to the publisher for their magic late last Spring, Billy Ray’s behavior was deteriorating rapidly. Of course, I questioned everything – was this a delayed reaction to the move, was their a mismatch with support staff, had I been too busy to adequately train staff, were there medical issues we weren’t seeing, etc., etc. We redoubled our attempts at staff training at the same time we looked at medical and dental issues. Behavior issues continued to become more difficult and no answers became immediately obvious.

Billy Ray was being treated for one of his skin infections and taking oral antibiotics. As his behavior became more difficult Brice Stanley, PA-C, did a very thorough workup to try to eliminate any and all medical issues. Eventually he sent us to the hospital where they found no reason for his behavior and were suggesting sending him home on increased psychiatric meds. By that time I knew something medical was going on.

After the strongest advocacy I could muster, the emergency room doctor ordered a catscan. Billy Ray had leaking appendice, enlarged pancreas, gastritis and a beginning ulcer. He was rushed to emergency surgery. The reason they couldn’t find it was because the antibiotics for his skin infections were masking the lab test results. Just 47 hours after the first surgery he was rushed back to emergency surgery with internal bleeding. This time he didn’t resume breathing adequately after surgery and had to be on the ventilator for nine days.

In many ways his recovery from that episode could be described as nothing short of a miracle. I have often said it is what happens when you combine good medical care with prayer.

His behavior since that time and the up and down medical issues has been pretty well documented herein. See the most recent update for more on what we learned.

This week we realized that we substantially have our old Billy Ray (active, noisy, easily confused, etc.) back. The out of control behaviors or physical aggression have not occurred in 10 days. Now that the medical team has done it’s part we can start again to do things that work for Billy Ray in terms of adapting his environment and schedule to reduce confusion and behavior difficulties.

Is he easy now? Of course not. It is a constant need to stay on top of things. When he is going to sleep at night, I often observe his journal that happens to be on his computer. I am able to see patterns of behavior that occur after similar circumstances. We can then modify the circumstances that seem to trigger the problems and avoid. In the alternative we can track things that working and continue them.

Now we can do what works for Billy Ray. We don’t have to be stuck on doing what works for every person with a similar diagnosis because Billy Ray is a beautiful snowflake.

It will be tiring for a while to start again but the sense of satisfaction at seeing progress is what keeps me going.

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

Sample Chapter is Online

Today is a two fer blog. I had already written today's blog when I learned that my publisher, AMACOM Books has the information for the book on their website. You can click here to go to AMACOM's listing for the Parenting Your Complex Child. On the right it there is a place to click for the table of contents and to read a sample chapter.

The "Look Inside" feature is now activated on Amazon so that you can read a sample chapter there (different from the one on AMACOM) and click on the "surprise me" button which brings to you to various parts of the book. I checked it out and was amazed at how much you can see doing that.

I am really glad to have that much online because I know that not every book works for everyone. I once told my editor that I wish I had a dime for every book I spent big bucks on that didn't help. I hope people will like my book but that they have an idea what they are getting. I made every effort to help parents decide what to do for their own child based on their knowledge and experimentation instead of telling them what to do.

Until next time,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com

Fighting Government Red Tape

The old Billy Ray (before all the medical issues) is reemerging rapidly. Last night was a case in point. He woke up at 4 a.m. content to stay in his bed as long as I was in the room. Believe it or not, a lot of Parenting Your Complex Child was written from his computer in those nights.

I started a new book proposal last night about creating a life for lower functioning children and adults. As I worked the gnawing question was how will government red tape frustrate parents in trying to use my suggestions. The proposal was set aside and a letter drafted for a Congressman I think might be interested in trying to overcome some of that red tape.

If you have examples of how policies prevented your child or adult child from being able to do vocational or other things for fear of losing the medical care or other supports and would like to share with me for that letter to the Congressman please email me.

If we could work together to alleviate some of the red tape it would be better for taxpayers as well as people with disabilities. Maybe people with disabilities could contribute more to their own care if they were allowed to receive certain things without losing urgent medical care, etc.

Perhaps it is naïve to expect Congress to cut through red tape. On the other hand, they cared enough to create Americans with Disabilities (ADA) and the IDEA educational bill. Maybe they care enough to clean up some of the well intentioned but tangled in red tape government policies, which effect our children. It seems worth trying AGAIN.

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

The Dream is Reality/Update on Us

We might as well be honest, I am just too emotional to write much today. My wonderful editor, Ellen Kadin, sent me an advanced copy of my book so I’d get it faster than the author’s copies which are coming slow route. It has been so long in the making that it has seemed a bit unreal. It seemed a dream. Holding it in my hand makes it real.

I feel as if I have a whole new family at AMACOM Books who have been so patient and kind with me. Based on the experience shared with me by a couple of authors I’ve become acquainted with I realize how blessed I was to have AMACOM as my publisher.

Billy Ray is unimpressed. I showed him his picture in the book and he said "damn book". I think he may have been told too many times that I had to write the book when he wanted to go somewhere (smile).

Parenting Your Complex Child will come to stores in April and but can be preordered now on Amazon in the U.S. and U.K and Barnes and Noble .

As a bit of an update on us, Billy Ray has been more back to normal (for him) in the past few days. To the people from AMACOM who heard Billy Ray’s noise in the background this morning, it might seem strange to that we are back to normal.

Noise and mania are a part of Billy Ray that we have learned to accept over the years. The extreme “communication by behavior” is not normal for him. He might throw things or punch on when something is not working but if we adapt his environment and schedule it doesn’t happen much. The aggression and out of control is really rare. When his behavior became so aggressive this summer it was clear we had something medical going on.

Dr. Hester finding the dental problem that didn’t show in the x-ray may have been the change. He was also fighting skin infections that were not responding to the prior antibiotics. Brice Stanley, his medical provider, lanced one and changed the antibiotic. Either or all of this could be responsible for his improved behavior.

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/