Time to Call Murder What It Is

When I wrote My Outrage, Mother Gets Suspended Sentence, it was possible to see a bit of the mother’s frustration while not condoning her actions. Mrs. Markcrow had taken Patrick, her 36 year old son to the emergency room and tried to get help for his self abuse. The emergency room doctor testified that he had never seen anything like that behavior. Nevertheless, the hospital sent Patrick home for his mother to deal with. Of course, she was wrong to suffocate Patrick and I am outraged still whenever I think about the suspended sentence.


That story and the story of Katie McCarron pictured herein is a different story with the same tragic end. As Christina Chew’s post states in its’ title Katie McCarron was Beautiful, Precious and Happy Katherine McCarron.

It is time that we look at killing children and adult children with disabilities as what it is, murder not hopelessness. Parenting a child who experiences any form of special needs means a life change. We will become someone we never knew that we would be, for the good or the bad.

There is no way we will remain unchanged by parenting a disabled child. We may change into angry and frustrated people fighting the plight of our child and the whole family. That may be a natural place to start. Anger is a part of grief. Staying stuck in that is harmful for the child and parent(s).

Acceptance can be a powerful step. It is not a slam dunk. However, recognizing that there are some things that can be changed and some that must be accepted is absolutely necessary to move on into a more peaceful way of life. Acceptance brings with it a joy in every milestone and in the little things.

The choices we make about the care of our children and acceptance of the impact a disability brings to our lives will make a major difference on whether or not we murder our child. Murder is murder usually for some purpose be it greed, selfishness or thrill seekers. Parents murdering their children is not mercy killing especially in cases like Katie McCarron who was so beautiful and happy.

Have I made foolish mistakes trying to make life better for Billy Ray and me? Absolutely! However, I have want to state straight out the thought of killing him has never ever crossed my mind.

I want to share through some embarrassment that as a teen I experienced a lot of suicidal depression. I have considered it once since becoming Billy Ray’s mother(having nothing to do with him) but it was short-lived because of Billy Ray. He is unequivocally the cure of my suicidal thoughts not the cause of them. He is my symphony with the low and the high notes. It has been a different life than I might have dreamed of but I am so glad we have shared it together.

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

Trying to Find Cause of Billy Ray's Pain

Billy Ray came through the colonoscopy fine yesterday. Dr. Bochner said that everything looked normal. Biopsies were done so we will have to wait from the results but he didn't expect them to show anything.

That is, of course, good news. At the same time the frustration on not being able to explain his pain. Dr. Bochner seems to feel it has something to do with diet but none of the tests done to this point have identified anything as the culprit.

My mind is racing over the past year. The doctors said that pain for a few weeks after his appendice and exploratory surgery was normal. It has continued for over a year now. However, we have made significant changes in this diet, etc. because we have dealt with what appeared to be diabetes (but has now stabilized and may have been only because of problems with the pancreas) and the acute episode of pancreatitis.

While some swear by "diet" everything, my personal experience has been that I can't use those products because they make me ill. Of course, Billy Ray does not have my chemistry being adopted but I have been wondering if the change to products like that to deal with his blood sugar and pancreatitis issues could be having some impact on his abdominal pain.

I called Brice Stanley, his primary medical provider, this morning. I wanted to maybe test going back to his regular diet without some of the artificial sweetners. He thought that was worth a try until he sees Dr. Masterangelo (gastric surgeon) again on the 14th. So for at least a couple of weeks BR can enjoy some of his favorite foods and see how it goes.

In the back of our minds has been the Nissen Fundoplication surgery which Dr. Masterangelo has recommended doing if the acid reflex (GERD) didn't improve with medications. However, he wanted BR to be as stable physically as possible before doing it. I haven't not been anxious to do that because idea of wrapping his stomach around the base of his esophagus is scarey. However, we do seem to have come down to few options or answers to his pain. If returning him to a more normal diet (for him) doesn't improve the situation
by the appointment time we will likely look at doing the surgery.

It is my understanding that this procedure has been frequently done of complex children. If any of you have experience with it, I'd love to hear from you.

He got up about 6:15 a.m. and wanted to be rocked for a little while and is back to sleep. I assume he is tired from the events of the last two days including the "cleansing" and the need for sedation for his procedure. At nearly 9 a.m. he is still sleeping.

That's where Billy Ray is today. I will keep you posted.

Until next time,
Peggy Lou Morgan
Club Mom Special Needs Children Expert
Amazon Blog
Websites: www.parentingyourcomplexchild.com and www.lighthouseparents.com
Lighthouse Parents Blog
Yahoo Group

Billy Ray Multi-Tasking

I could resist snapping this picture of Billy Ray. He doesn't really use the computer except for occasional games but he loves the screensaver. It is made up of family pictures and activity pictures. It is sort of his nightlight as well. Tonight right after his support staff left he went into his room and I went to get something before following him. When I came in this is what I saw. He is doodling, listening to the walkman and watching the screensaver all at the same time.

The interview with a Hobart, Tassamania, Australia radio station yesterday was great fun. I hope to chat with them again at some point.

Billy Ray's day of preparing for his colonoscopy went pretty well all things considered. I probably would have been as grouchy as he was if I had to go through it. We are off bright and early for the procedure and then promised to take him out for breakfast.

Until next time,
Peggy Lou Morgan
Amazon Blog
Lighthouse Parents Blog
Websites: www.parentingyourcomplexchild.com and www.lighthouseparents.com
Yahoo Group

Update on Us 7/25/06

To give you a quick update on us. This is another busy week.

Billy Ray switched his regular Meals on Wheels route from Wednesday to today. I am really good at making sure we don’t schedule appointments on Wednesdays to interfere with his beloved Meals activity but I didn’t realize we would have to start the bowel cleansing so soon. We decided it might not be a good day for him to do his route. The Senior Center graciously helped him switch days.

I am excited with two interviews that will occur in the next 24 hours. The first is with a radio station in Hobart, Australia. I am not clear if it will be live or taped and what the call letters are. I wrote to the Australian publicist to clarify and if I find out before the interview (4 p.m. my time today – Tuesday and 9 a.m. Wednesday in Hobart) I will add a post right away for my Australian readers.

The second interview is a “pre-interview” at 7 a.m. tomorrow with a Christian radio program that I so much want to do. I will give you more details when I know for sure it will make it to the air and when.

Immediately after that interview we will have to start the wonderful bowel cleansing protocol for Billy Ray. He will need to stay on clear liquid the rest of the day which may be a major challenge. It could be an interesting day.

On Thursday we have to be at the hospital in Bend (27 miles from home) for his colonoscopy. As I wrote before I am pleased with the anesthesiologist that will be handling the sedation so I am not as anxious as before.

I will try to check in tomorrow but it may be Friday before I am able to post again.

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

Being Mom or Dad First

During the recent conference sessions by David Pitonyak, Ph.D., he talked a lot about difficult behaviors being “messages” and usually about some unmet need. That does fit with what I have been calling “communication by behavior”. I must admit I tend to think of Billy Ray’s communication as being more physical issues because that has often been the case.

On the trip home from the conference, I thought a lot about Billy Ray’s behaviors and if there were needs we might be missing. On Saturday, I downloaded several of Dr. Pitonyak’s handouts from his website. One of them was called a Note to Parents. It was another of those Ah Ha moments.

The point of A Note to Parents is that we should be Mom or Dad before the other multiple roles we must assume in our children’s life. It is so easy to become so involved with doing things for our kids that we lose being the Mom or Dad.

As my regular readers are well aware Billy Ray’s behavior deteriorated shortly after I had submitted the manuscript during some major health issues. We nearly lost him last summer. A year ago tomorrow he had the second surgery in 47 hours and wasn’t able to breathe on his own for nine days. During the past year we have been working with a team of professionals to find out why the pain continues after the known issues have been addressed.

The Ah Ha moment was that I realized I have been so busy trying to work with the team of doctors, train support staff besides my work related to my book. I have been here and caring for Billy Ray but have become more the caregiver and less the Mom.

Dr. Pitonyak told the story of a young boy who into self injurious behavior when he had ear infections. After that had been address the child repeated the behavior. Dr. Pitonyak, the wise storyteller and almost comedian that he is, said that the child had learned that “Mothers are liars” they say they will only be on the phone for 5 minutes and then are gone for 30 minutes, etc. The self injurious behavior had become learned behavior because he learned that if he did that he would get his mother’s attention immediately.

With that illustration in my mind I took time to watch one of Billy Ray’s favorite movies (Sound of Music) with him this weekend. There is a line in there where the children are telling their governess about all the tricks they have pulled on past governesses. She says “you are such nice children, why would you do those things.” They respond “how else am I going to get Father’s attention.” Ah Ha!!

Major parts of his difficult behaviors are probably physical and I am working on additional training for Billy Ray’s support staff but it seems likely that some of his “messages” are about the reduced closeness during all that we have gone through in the past year.

Yesterday, I read him the visual I created about his adoption and we talked about how glad I am that he is my son. We spent time just having fun together.

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

Home from Direct Supports Conference 2006

We are back from the conference on Direct Supports at Oregon State University. Billy Ray did fine while we were away but seemed really glad to see us and we him. He is very much back to normal (active and a bit noisy) this morning.

The conference was wonderful. I enjoyed it very much and learned a lot. My own presentation was a little disappointing. I got lost with my power point slides and it threw me after that. My audience was gracious and we had some good interchange. I was talking with my pastor about my presentation later that day. He laughed that after all these years of speaking he had the same experience last Sunday in the first service. I expected it to happen when I started speaking a couple of years ago but it has gone well for the most part. It was surprising to sort of freeze up after I’d had some practice. It might be learning to use our Power Point projector. For whatever reason, we just need to get past it because there is still information to share.

I wish that all of you could have been there to hear Dr. David Pitonyak, one of the keynote speakers. I also had the opportunity to attend several of his other sessions during the conference. He is absolutely wonderful. His humor is a powerful tool in making his points. He definitely catches your attention. I got an opportunity to chat with him at the hotel when we were both getting coffee one morning. I asked his permission to share some of the things he said with you. I will be sharing some of it with you here and on my Amazon blog soon. I don’t want to get too much into it on a Saturday blog since I write under the influence of Billy Ray (smile).

The other keynote was Nancy Ward who has been actively involved in People First. Hearing her talk about her experiences and those of several of her friends who experience disabilities was very enlightening. I had the opportunity to chat with her over dinner the first night as well. I enjoyed meeting her very much.

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

You Get What You Expect from Your Child

In my Amazon blog post Those Ah-Ha Moments I wrote about the things we hear or read that is sort of like a light bulb flashing in our head helping us to understand why our kids do something. One of those moments came to me reading The Explosive Child by Ross Greene, PhD

Dr. Greene states: "**your interpretation of a child's explosive behavior will be closely linked to how you try to change this behavior. In other words, your explanation guides your intervention."

Dr. Greene says that we must assume an explosive child would do well if he or she could. It is natural to assume that the child is manipulating us or misbehaving. I have been there with Billy Ray and still struggle at times to change my approach. What we say and how we respond does make such a difference in how our child will respond.

In the old days when I was trying to figure out why Billy Ray yelled so much, I thought or even said “would you just shut up”. One time Billy Ray even said “I can’t” and he was right. I needed to learn to change approaches and adapt to him. He couldn’t adapt to us.

I loved Dr. Greene’s comments about the normal approach to talk to a child about why he or she acts the way they do. He says the child is the worse person to ask. I heartily agree. Billy Ray has proved that over and over again. I need to listen to him through his reactions to activities or situations not expect him to be able to put the problem in words.

I am off to Corvallis, Oregon to Oregon State University for the Direct Supports Conference on Wednesday and Thursday. I am really excited because the keynote speaker is Dr. David Pitonyak who I wrote about previously.

Dr. Pitonyak writes: “My practice is based upon a simple idea: difficult behaviors result from unmet needs. In a sense, difficult behaviors are messages which can tell us important things about a person and the quality of his or her life.”

My presentation is the first time slot following the keynote on Wednesday so I am hoping to get to attend lots of other sessions including as many of Dr. Pitonyak’s sessions as I can after that.

Until next time,
Peggy Lou Morgan
Amazon Blog
Lighthouse Parents Blog
Parenting Your Complex Child Yahoo Group
Websites: www.parentingyourcomplexchild.com and www.lighthouseparents.com