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

Becoming Experts on Experts

I recently wrote an article for Club Mom about the job of parenting a special needs child. It is not up on their site yet but I will post a link to my articles when they are up. It is definitely true that parenting a complex special needs child is a career in itself.

A post on the Mote Guardian Blog about parents going online to understand their children’s disabilities reminded me of something I shared in in Parenting Your Complex Child. It was taken from an email from Billy Ray’s former doctor who allowed me to use it but without his name.

“*** I would think the strength of your book would lie in it's being honest in presenting how frustrating the struggle has been and how much experts often don't know. You could describe yourself as an expert on experts, I guess!”

“Becoming “an expert on experts” is an undesirable title. The only way a parent becomes this is to have crisis after crisis taking the parent from one professional to another.” Excerpted by permission of the publisher from "Parenting Your Complex Child" by Peggy Lou Morgan © 2006 Peggy Lou Morgan, published by AMACOM, division of American Management Association, New York, New York.

When our children experience various maladies or challenges we have to become experts in areas we were never really aware of. Our education and career seems to center around learning what they need us to learn so that we can care for and advocate for our children.

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

An Inspiration - Man with Down Syndrome Turned Exercise Coach

I was surf around on the Net tonight and found this link to a story about a man with Down Syndrome who is a fitness coach to others who experience Down Syndrome and some other disabilities. It is such an inspiration I want to share it with you.

It is so important that we look to what our children can do more than what they can't and try to help them do what they love most.

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

Setting Reasonable Boundaries

In an earlier post we discussed allowing our complex children and adults to experience life with its’ normal risks (such as a burn on the stove). Besides the risks we all experience in life there are boundaries we have to accept. Adults are not necessarily free to do everything they want to do despite being independent adults. With all that has happened with Billy Ray’s physical problems and other significant changes in his life (finishing his school eligibility, moving to a new community, hiring a new weekday support staff) we are having to think more about what is reasonable to allow Billy Ray to experience and to expect from him.

Billy Ray is testing boundaries long established in his life. There are probably several reasons for that. The structure in his life has been impacted by recurrent health problems and the significant changes noted above. It could also be that he is becoming more and more adult. As shared here, Billy Ray is demonstrating some higher functioning skills that he experienced prior to the seizures that changed his life 12 years ago.

Boundaries have to be looked at it terms of future planning as well as present living situations. There are things that will apply to both. However, if patterns are set at home it may be difficult for him to adjust if he had to be in a group setting, etc.

His present situation is that he lives with his Mom and stepfather with a support staff coming in during the weekdays to give Mom and “Dadgert” some break to do needed things. Dad and Mom alternate being his one to one support the rest of the day weekdays and all weekend. As I state in our staff manual, while this is effectively a residential treatment center for one, it is still a family home to three of us. Billy Ray doesn’t have free rein to go into our bedroom, my office, etc. and get into our things. We have a right to our boundaries too.

If he were to be in a group home or in apartment with a roommate, he would need to respect others’ boundaries too. Lately he has wanted to come out into the living room in nothing but his underwear. Part of this is because his beloved western jeans are not comfortable with his abdominal pain but we have comfortable sweats or even his bath wrap as an alternative for him during those periods. In a group home or other setting he wouldn’t be allowed to run around in his underwear. Additionally, it is inappropriate here because of visits from Larry’s granddaughters, etc. This is an example of thinking about a boundary both presently and in the future.

Present support staff has been with him just less than a year so is a bit unsure of prior boundaries. Billy Ray has been sick all of the time since he has worked here. Additionally, Billy Ray is coming out of the out of control he was demonstrating when staff was hired last August. Billy Ray was very much
The Explosive Child as in the wonderful book I am reading by Ross Greene. I think part of the reason for his explosions has been sudden onset of pain. He has never handled pain in the way many children do (crying for Mom to kiss it and make it better). He interprets pain as something that someone is doing to him and it makes him mad! Staff is understandably a little hesitant to invoke the explosiveness. We need to support staff in understanding how to enforce realistic boundaries.

Billy Ray is smart enough to play Mom v. Dad v. support staff game as I wrote about so he is going to test his limits for all they are worth. In a way, he feels more secure when limits are established because he knows how far he can go and no further. Thus, it becomes important for all parties working with a child to be on the same page and as consistent with the other as possible.

No matter where he lives there needs to be boundaries. Observing realistic ones now will help his future to be more successful.

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

Feeling a Little More Hopeful

Not a lot to share yet but since I am taking you with me on this journey to find the cause of Billy Ray's pain and seeming deteriorating health, I wanted to share that I am feeling more hopeful today.

Not only am I frustrated but the other members of the medical team are probably frustrated because we have tried so many things and nothing demonstrates why the issues continue. The team called in Dr. Rick Bochner from Bend Memorial Clinic.

Dr. Bochner saw Billy Ray in the hospital and again at his clinic yesterday. We went over the results of lab tests run while BR was in the hospital. I am relieved to find he does not have a sensitivity to glutten because that is something I feared. Billy Ray is a big bread fan and there is so much talk about glutten free diets I have asked to have him tested for it several times over years but it hasn't been done. This time Dr. Bochner honored my request and eased my mind considerably.

The thing I felt best about in the visit with Dr. Bochner, though the glutten thing was a big relief, was that Dr. Bochner said "I want to stay with it and find out what is making Billy hurt and fix it." That commitment is encouraging. That is especially true since the other two members of the team are equally committed and have gone far beyond what many providers might do.

Next on the agenda the wonderful colonoscopy on the 27th. I am so relieved that Dr. Bochner had his assistant work to schedule the colonoscopy when both he and Dr. Raudy will be available.

As shared before it is frightening when we have to call in an anesthesiologist because of his history on not being able to come off the ventilator. We met and immediately respected Dr. Todd Raudy when he sedated Billy Ray for a scope of the upper abdomen in April. I have met with many anaesthesiologist over the years not only for Billy Ray but for prior disabled clients. It is clear they understand their field well but none have communicated so much understanding of the specialized needs of disabled children and adults as Dr. Raudy did.

It is still onward and forward. Billy Ray is up and down but able to participate in his Meals on Wheels yesterday before his visit with Dr. Bockner and is now on his Thursday activities.

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

Reading the Signs AGAIN...7/3/06

The weekend has been a bit up and down. Billy Ray has continued to have pain some of which may be caused by the medication for the yeast in his esophagus. Two of his medical providers have said that it could cause irritation and even stinging.

As in the past he has had severe pain sometimes with communication by behavior. Once the pain is treated with his meds, he is anxious to be busy at least for a short time. This weekend he went for short periods with his stepfather to our storage unit to help organize and remove what we can. It is just around the corner from us so when he is tired he can come home and go back later if he wants to.

The revised picture schedule for the week is now in draft. He seems to have more irritation during the week than on the weekend. At this point, I am trying to easedrop a bit to ascertain if he is having more pain, additional staff training would be helpful or the schedule needs more honing. It is a constant need to Read the Signs.

When there doesn’t seem to be any easy answers I tend to pull away as much as possible and try to seek guidance spiritually. That part of the journey is an important one but not necessarily what you expect to hear about when you come to this blog. I have created another blog that will specifically discuss the spiritual part of our journey. It is Lighthouse Parents Blog if you would care to visit.

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

Keeping on, Keeping On..7/1/06

Billy Ray was discharged from the hospital about 3:30 p.m. on Thursday. I apologize for not writing that on here sooner because I got some wonderful notes from fellow bloggers worrying. It has been hetic. Billy Ray went into the local clinic Friday morning and the case manager came to the house soon thereafter to do a in-home support budget plan for the new year that had been rescheduled until it couldn’t be rescheduled any longer.

I started to write last night but was at a loss to know what to say. It seems like I complain about my frustration too much and that dispels the joy of being Billy Ray’s Mom that I want to convey because it is real. Do I tell you about a nurse who caused problems? Probably not, since there is only one hospital in our area. We might have to go back someday.

I would like to tell you that all is well and we fixed the problem. That is what you want to hear and what I want to believe. My gut says that’s not true. As shared previously Billy Ray was almost sent home from the emergency room in July 2005 with increased psychiatric medications because the ER doc said there was no medical reason for his pain. If advocacy had not convinced the doctor to order a cat scan he would probably have died because his appendix was already leaking bacteria into his abdomen in addition to other issues the surgeon found. My “gut” says we are in the same situation but it is not as simple this time. Billy Ray has a strong relationship with his primary provider and the surgeon and I know that they are doing everything they can to find whatever it is.

They did find that he has yeast in the esophagus but since that is believed to be caused from recent antibiotic treatments for his sinus infection I don’t think that is the answer to his months of pain

I lost my cool at the hospital. I haven’t done that much since I learned to advocate better but when I am afraid for Billy Ray and frustrated that no one is understanding his needs it is a real struggle. I was embarrassed for myself and others on the team who were probably effected.

I feel bad for the team, especially Brice Stanley, PA-C, who is surely as frustrated as I am at trying to find the answer. He has done everything that he could do and more than many would. I am so thankful that he is our family primary provider. It just seems that all the things going on with Billy Ray makes finding answers harder. One thing masks another.

A routine thing happened when he was admitted. I was asked to do a code status. While there was nothing terminal in his present situation, they had to have information about how to handle such things as his heart stopping. I did feel very good about discussing it with Brice and Dr. Masterangelo who have been involved in the team since the ventilator episode last year and felt that we came up with a reasonable plan for that event if it should occur in the future.

Basically we are going to continue to do everything we can to help Billy Ray to have the most quality life he can: the best medical care we can provide and the best activities and care we can provide at home and in the community. Hopefully helping him to have as many smiles like this as possible. However, we are not going the ventilator route again.

Having made that decision it felt peaceful that we were in agreement. However, that night when I couldn’t sleep at the hospital my mind raced to something I had read in Breakthrough Parenting for Children with Special Needs by Judy Winter. In the foreword to that book, Gail Williamson wrote about Judy Winter’s loss of her son: “I am sure the pain of losing a child is just as strong no matter what the child’s needs are. The difference, I believe, is that the void can be cavernous when a parent loses a child with special needs. All those daily activities immediately cease, and you are left alone with time – and time can become your enemy.”

Thinking about that I realize more fully as I have said so often that he is the music and the notes of my symphony, he is the music of my life. It makes me question whether I fear for him or for both of us. Without doubt, I fear his suffering and that is something I will fight with everyone ounce of strength I have. However, I have to admit since I believe that there are multiple types of healing: becoming well through great medical care or divine healing here on earth or in Heaven, the fear of losing him is more selfish. It terrifies me.

He has had a pain pill which helped and now is enjoying time with his stepfather. He gets relief and then wants to do things. We are going to do what we can to give him quality in each day and pray that somehow what seems to be hidden from the doctors will become clear and be fixable.

It has been a struggle to know how transparent to be with you here but seemed important to do so.

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