Off Topic: Our Response to Senator Kerry's Remarks

This is a blog about parenting a child/adult with special needs. We try to keep it focused on that topic. However, we are also a family. My husband is the proud father of four adult children and 12 grandchildren. Billy Ray and I are glad to have become a part of his family.

When someone demeans Billy Ray, I have been called a Mother Bear and worse. The same emotion came out in Larry and I today when we watched a news report of Senator John Kerry's remarks: "You know, education, if you make the most of it, you study hard, you do your homework and you make an effort to be smart, you can do well. And if you don't, you get stuck in Iraq," (Copied from www.foxnews.com ). He was later to say he wouldn’t apologize for what was a botched joke and criticism of the President. We didn’t see it that way. We saw him attacking Michael. We could attack Kerry with our own angry comments, instead we choose to introduce you to Captain Michael R. Morgan, Intelligence Officer, US Army National Guard.

Michael was in the U.S. Air Force for 4 years before marrying. After a divorce he remained the custodial parent of his four children and went back to college to further his education. Larry and I have often talked about his organizational skills at providing for their needs and care. Larry likes to tell of how he handled the morning routine like the military. He is a great Dad.

Michael went to Iraq but he wasn’t stuck there because he failed to get an education and work hard. He has a degree in Environmental and Biological Sciences and a management position for the Corp. of Engineers. He went to Iraq and other international assignments out of duty. He left his children and his wife to do his duty.

Michael and his wife have been there for us repeatedly. They were here when Billy Ray was on the ventilator with an uncertain future. Billy Ray loves all his stepsiblings but he knows Mike best because of their frequent visits and they have a special bond for which I will always be grateful.

We see Michael as being there for our country the way he is there for his family.

If you are the parents of a service man or woman in any country, you could probably share similar pride.

Larry and Peggy Morgan

Blogs: Amazon Author Connect and Lighthouse Parents
Websites: www.parentingyourcomplexchild.com and www.lighthouseparents.com
Club Mom
Parenting Your Complex Child Yahoo Group

Reflections on Communication by Behavior..10/22/06

I am writing this in Billy Ray’s room before sunrise Sunday morning. All of a sudden it dawns on me we have the old Billy Ray back – the easier one to figure out. You will note that I didn’t say “easy” to figure out. My groggy mind is flooded with some of the changing phases.

That horrifying and wonderful first day, March 29, 1984, when my mother and I went to the adoption agency to pick Billy Ray up he was smiley and happy until we got into the car and he screamed all the way home. Because he was still on soy formula and baby food at 15 months old we had to stop at the store. My mother tried to comfort him but he screamed the whole time I was in the store.

He ate more for his lunch than his former adoptive parents said he ate in a whole day so we decided he must have been hungry but he continued to cry and scream. I rocked him and sang to him trying to get him down for a nap He continued to scream. Mom took over and tried rocking him and giving him a bottle. He continued to scream. Both Mom and I feel dejected. She said she had always been able to comfort babies and couldn’t figure it out. I felt he just didn’t want me.

Finally we put him down in his crib to cry himself to sleep. Once we took his shoes off he stopped crying. His little feet had been crammed into shoes that were two sizes too small for him. He woke up two hours later the smiling happy baby enjoying his new crib and toys pictured here.

In the past 22 years we have spent together, Billy Ray’s changing behavior has often been his way of communicating something needed adjustment. It could be as simple as he’s got energy he needs to release or the bright lights are bothering him or as complicated as some physical problem he can’t communicate but it generally has means something.

The ever present challenge is to figure out what he is communicating. This morning he woke up before 5 a.m. very noisy and bouncing in his bed. I went through the full gamut, did he need to go to the bathroom, was he is pain, etc., etc. Alas, I realize this is the way our mornings were before the range of physical issues the past couple of years. He is feeling better. Mornings are noisy until he “gets it out” of his system. He is happy and full of energy. It is time to wake up and get on with our day whether the family is ready or not.

Until next time,
Peggy Lou Morgan
My Other Blogs: Amazon Author Connect and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom
Parenting Your Complex Child Yahoo Group

If People with Down Syndrome Ruled The World

I came across this link in my favorites. I got it from a list I belong to and I don’t believe I have ever shared it here. It is from the National Association for Down Syndrome (NADS) and a presentation called If People with Down Syndrome Ruled the World. I love it! It is too long to quote all of it but the following is one of my favorite quotes from that presentation:

“All people would be encouraged to develop and use their gifts for helping:

In our world, too often people with Down syndrome are “DONE FOR” by others, when in fact they are great givers. If they ran the world, their ability to minister to others would not be wasted.”

I talk a lot more about Autism because it seems to impact Billy Ray much more than Down syndrome. However, he does have the dual-diagnosis. In some ways the sweetness, albeit occasional stubbornness, he experiences with Down syndrome is a reward for dealing with the more complicated things he has to deal with.

The above quote reminds me a great deal of Billy Ray’s desire to serve others. He wants to bring coffee to guests, etc. He is not steady enough to carry a full cup of coffee to someone but I pour a little coffee in a cup and follow him with the coffee pot. After he presents guests with their coffee I add more to the cup. It thrills him to do that.

Until next time,
Peggy Lou Morgan
My Other Blogs: Amazon Author Connect and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom
Parenting Your Complex Child Yahoo Group

Upcoming Radio Interviews

I will be doing some radio interviews in various parts of the U.S. as follows:

Wednesday, October 11, 2006 1 p.m. ET WOGR - AM in Charlotte, NC. It will reach other parts of North Carolina too. You can find locate other North Carolina stations by going to Word Net Radio .

Thursday, November 2, 2006 at 9:05 a..m. ET, WBCL-FM which covers parts of Indiana, Michigan and Ohio. You can check their site for a station near you. They also put archives on their site so you will be able to listen to the interview even if you aren't in that area.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect and Lighthouse Parents
Websites: www.parentingyourcomplexchild.com and www.lighthouseparents.com
Club Mom
Yahoo Group

Billy Ray and Dr. Mike Masterangelo

We went to see "Dr. Mike" yesterday for the follow-up after surgery. Billy Ray is doing really well and can even slowly start back on general diet which pleased Billy Ray greatly.

Last night he had a chicken patty and mashed potatoes. He was absolutely delighted and a bit mad at me because I wouldn't let him have more. I was being cautious because he ate too much at lunch and it made him sick. It will take time for his stomach to be able to handle larger quantities.

While the surgery (the Nissen) is not just for Autistic children, Dr. Mike said that is necessary for many and that they do really well afterwards. Billy Ray certainly is recovering very rapidly.

Thanks Dr. Masterangelo!!

Until next time,
Peggy Lou Morgan
My Other Blogs: Amazon Author Connect and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom
Parenting Your Complex Child Yahoo Group

Finding Understanding for Your Child

After a lot of conversations lately where I needed to explain how Billy Ray perceives things, how he needs to receive information and what he is unlikely to understand or accept, I remembered an article written by Susan M. LoTempio, "Service Station" an Oxymoron for Drivers with Disabilities. The article is written for journalists on the Poynter Institute website.

I have been around people who experience various kinds of disabilities my entire life. My Aunt Bonnie is wheel chair bound and I assisted with her chair as soon as I was old enough to help. However, Aunt Bonnie never drove a car. When I read Sue’s article I was shocked at my own lack of understanding in this process. I never thought about things like not being able to reach the hose or receipt.

The same principal applies in so many ways to the lack of understanding in the community whatever disability our children experience.

In Parenting Your Complex Child, I shared:

“In trying to explain to my friend, who is so skilled at looking nice, I realized there was no way she could possibly understand. Unless you live it, you cannot know what it is like to fight with your child to get him ready for an outing, not sure you were going to make it at all. If your child finally cooperates, you can get him to church in his Sunday best while you have thrown jeans on and brushed your hair wet because there is no time left to dry and curl it. You either have to go that way or stay home.” Excerpted by permission of the publisher from Parenting Your Complex Child © 2006 Peggy Lou Morgan, AMACOM, New York, NY 10019. http://www.amacombooks.org/

That friend had been an airline attendant and was presently a musician and pastor’s wife. Her appearance was a major part of her life. They did not have children for her to draw on. It was really unfair for me to expect her to understand. As you can see by the picture with this friend they developed a very special relationship as she got the chance to know Billy Ray for who he is.

It is tiring trying to explain your child’s needs to everyone. I find myself still getting frustrated in conversations with medical personnel who still don’t get it with Billy Ray. I have had to learn to:

“**decide how important it is for someone to understand and then prioritize the energy I will put into communicating to that person. If you meet a rude person in a store or restaurant, you might decide it is not worth it and ignore that person. If the person is a medical or special-education professional, put all the energy you can into determining the best method of communicating your child to them. That way, suggestions and decisions the professional makes regarding your child’s care will be informed decisions.” Excerpted from Parenting Your Complex Child.

I think you have to ask yourself if it is logical for them to understand your child without education from you and whether it is that important in the grand scheme of life.

If you want to read more on this topic, AMACOM has put the chapter quoted from as the sample chapter on their website.

Until next time,
Peggy Lou Morgan
My Other Blogs: Amazon Author Connect and Lighthouse Parents
Parenting Your Complex Child Yahoo Group
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Club Mom

Update on Billy Ray 9/30/06

Thanks for all your well wishes and inquiries about Billy Ray's recovery.

He is doing better than we dreamed he would do based on all the side effects and complications in the last year. He, of course, is not happy with the restricted diet which means soft foods. He wants hamburgers, popcorn, etc.

He is definitely getting tired of milkshakes. He will eat some baby food but throws his nose up at lasanga and other things in baby food that he loves adult food. I am getting as creative as I can with the food processor. I pureed lasanga for his lunch and he ate that well. Tonight I baked a terriyaki chicken patty then cut it up and put in the food processor with a little extra sauce so it would be smoother and softer. Both worked really well.

He will see Dr. Masterangelo for a followup on Monday and hopefully he will add some things. I know that bread is going to be the last to add and BR will hate that.

He is keeping himself busy mornings until he runs out of energy and then rests. I worried that he might be doing too much so soon after surgery but Dr. Masterangelo said it was good for him to be moving around as much as he can. I have been worried that he would hurt himself throwing himself on the floor like he does sometimes playing but he hasn't been doing that as much. He is playing with Penny Lane a lot this week.

The above picture was in our old house in Scotts Mills. I am running out of pictures that you haven't seen. Time to take some more!!

Until next time,
Peggy Lou Morgan
My Other Blogs: Amazon Author Connect and Lighthouse Parents
Websites: www.parentingyourcomplexchild.com and www.lighthouseparents.com
Club Mom, Yahoo Group

Buyer Beware - Freestats Site Checker

Frustration in dealing with businesses is difficult for all of us. However, it seems even more so as parents of children with special needs. I don't like badmouthing businesses but it seems important to share with my fellow bloggers and fellow parents the frustration in dealing with Freestats.

Stat checker services come with my websites and are very helpful information to me and to my publisher. I love knowing how many readers look at my sites and where they come from. It is exciting to see that someone from half way around the world looked at my sites while I was sleeping. Thus, when I started this blog I wanted to track the statistics on it as well.

A search engine found Freestats which seemed to have enough information and was supposed to be "free" as the name implies. Not long into it I realized that it wasn't free for adequate information so I paid for a year of a more advanced level of stats. Overall the service was okay except that it there were multiple entries for the same visitor in the "last 100" which was frustrating.

According to the information I was supposed to be able to add another site to it. Thus, when I started my Lighthouse Parents Blog, I spent a lot of time on the Freestats website trying to add it to my account. In frustration I clicked on "help" and got the message that this page didn't exist (this was months ago and it still says the same thing yesterday). I emailed customer support and got no response.

We have been doing a test on another stat checker for comparison. We thought we had some time because I subscribed to Freestats October 27, 2005. On September 26th, I got an email from a "no-reply" at Freestats that they were about to renew my membership and wanted me to update my account information. Larry and I book spent time on the links they gave trying to find out how much time we had. The email contained links to update my information but not how to unsubscribe. It also gave an 800 phone number which I called. They could not find me in their records at all and finally said that is because they are no longer involved with Freestats. They gave me a general number which turned out to be Google and none of the extensive voicemail choices had anything to do with site checkers.

The final straw was when Larry finally found a place on the Freestats site to unsubscribe and gave me the phone number. I called and again it took a long time for them to find my account. She said they would unsubscribe me as of September 30th. I said no that I had subscribed on October 27th and paid for a year. She acknowledged that and said that the next billing date was October 6th - still early. However, she said in order to avoid having it automatically bill my card she would have to unsubscribe me as of September 30th. I pointed out to her that this was ripping me off of nearly a month of prepaid services. She acknowledged that it was but said that if she didn't stop it on the 30th it would automatically charge my card for another year on the 6th. There was nothing see could do about it.

Until next time,
Peggy Lou Morgan
My Other Blogs: Amazon Author Connect and Lighthouse Parents
Websites: www.parentingyourcomplexchild.com and www.lighthouseparents.com
Club Mom
Parenting Your Complex Child Yahoo Group

My Son, My Teacher

A review of my book said there are books by professionals and books by parents but I tried to do both and proved why they don’t mix. That stung a bit because it missed the whole point of the book. I was thinking about it again in the past few weeks as well meaning comments have come in from various sources about how well we adapt to what Billy Ray needs.

There are many wonderful books by professionals and parents that give recommendations on how to take care of your child based on a variety of special needs. The problem is that most of our kids are unique and don’t fit into the mold of every other child with a specific diagnosis especially in they experience combination diagnoses. The reality is that none of the recommendations from professionals or materials I have read worked 100% for Billy Ray.

Billy Ray is my professor. The biggest success we have had is in learning what he teaches about what works for him. The journal and documentation system I created was a lot like taking notes in a classroom. I couldn’t possibly retain everything when he was tutoring me by his reactions to different things but when I looked back at my notes I did see the recurring reactions and change my approach to make it work for him better.

It took a lot to free myself from the need to do everything that professionals either personally or in writing recommended. In the end he has been the real expert in what he needs.

You probably have a great professor in your house too or you wouldn’t be reading this blog or other of my writing. He or she can teach more than anyone else if you will trust yourself to interpret the teaching.

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

Applying Creating a Community Methods to a Hospital Setting

I just wanted to let you know that I ended up getting up with Billy Ray at 4:30 a.m. to give him pain meds. I didn't go back to bed because I wanted to be sure he was okay. Since I was up I wrote a blog post on my Amazon blog about adapting and communicating in a hospital setting. I wanted to give you the link in case anyone is interested.

Billy Ray is a bit noisy but seems to have more energy. He is sorting toys and his closet which is his favorite form of play. He has also been marching with his walkman. While he seems to have some pain which is normal following surgery, he also seems to be doing better than I expected.

Until next time,
Peggy Lou Morgan
My other blogs: Amazon Author Connect and Lighthouse Parents
Websites: www.parentingyourcomplexchild.com and www.lighthouseparents.com
Club Mom
Yahoo Group

Energized Though Exhausted

I know the subject doesn't make sense but it is where I am tonight. We haven't slept more than 2 or 3 hours at time the past 48 hours so forgive me if this is rambling.

Billy Ray is home from the hospital already thanks to Dr. Masterangelo, Brice Stanley, PA-C, Dr. Raudy and a lot of answered prayers. Dr. Masterangelo was thrilled with how well he did in the surgery. He is having some pain which is to be expected but the whole process went better than we dreamed possible.

Of course, now it is time for me to adapt and communicate to this situation because we have an angry guy who wants popcorn, hamburgers, potatoes, and any kind of bread - all of which are no-nos for a while.

I tried several different things in terms of preparing Billy Ray and me for dealing with the hospital setting. I will share those either here or on my Amazon Blog as soon as I catch up on some sleep. However, I wanted to let my blogger buddies know Billy Ray is home in his own bed breathing just noisily enough that I know he is okay though covered up with his favorite quilt over head but not nearly as uncomfortable as before surgery waiting up with acid reflex and/or snoring loudly.

Until next time,
Peggy Lou Morgan
My Other Blogs Amazon Connect and Lighthouse Parents Blog
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom
Parenting Your Complex Child Yahoo Group

Billy Ray's Upcoming Surgery

I am not sure whether having advance notice of Billy Ray’s surgery this time is a blessing or a curse (smile). He has been in the hospital three times since July 2005 and all have been basically emergencies. You grab what you can and try to explain to my husband what he needs to bring to the hospital.

This time we have over a month’s notice. I am trying to be really organized about it getting his things ready and getting things done at home that end up being abandoned when we have the short notice things. However, it actually seems almost more stressful having this month to worry about the risks, plan for the post-operative care.

Billy Ray is having the Nissen procedure for his advanced GERD (acid reflex). It sounds so scary to me that they wrap part of his stomach around his esophagus to strength it. There are risks for everyone but Billy Ray’s general issues complicate them. I am probably most concerned about getting him off the ventilator after what happened last time. The risks worry me but we cannot just do nothing either. He aspirates food and chokes even when he isn’t eating because the GERD washes things back up when he is sleeping or just going on with his activities. He has tried multiple meds such as the purple pill (Nexum) and others for over a year and nothing has stopped his pain or choking.

The support in our church community is amazing. For example, Bruce (pictured here with Billy Ray) is taking a day off work to be there for Billy Ray during surgery. I am so touched by that. Also the “cookie lady” (Donna who makes the high fiber cookies for Billy Ray because he will eat them better when someone else makes them) and her husband plan to be there. Person after person has let me know that if there is anything at all we just have to ask. Maybe knowing in advance is a good thing after all. I think it also shows the benefit of becoming a part of a community no matter how difficult it is.

I am making him a new album to take with him with lots of his friends and activities in it. I have been reading him Curious George Goes to the Hospital and writing a personalized picture story to co-orindate with that so he will be clear on what to expect.

I probably will actually have more time to blog when he is in the hospital than I have had lately. I have some things from the conference with Dr. David Pitonyak I have been wanting to share with you but haven’t had a chance. I can access the computer in the family room at the hospital if he is sleeping. I will try to stay in touch.

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

Who Says Children with Autism Don't Make Eye Contact

I am preparing an album for Billy Ray with some of his special people so that he can take it to the hospital with him. He is having surgery on the 21st for his GERD. Here are two of the pictures I took Sunday at church. He isn't feeling well so they aren't the best pictures of him but they clearly show eye contact and I wanted to share.

This first one is with Denise, our pastor's wife. Denise is very special to Billy Ray and very insightful at supporting our family. When Billy Ray was in the hospital a year ago she even brought him a wonderful large stuffed dog knowing he couldn't have his service dog there. It was used mightily to comfort him and even to support his IV's.


This is Billy Ray with Dave who is a great friend and support both to our family and my work. Dave kept telling Billy Ray to look at me while I took the picture but Billy Ray just wanted to look at Dave. By the way we all call him Dave but for some reason BR refuses and insists on calling him David.

Until next time,
Peggy Lou Morgan
Blogs: Amazon and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom Articles
Yahoo Group

Hanging with Billy Ray

I have been working on another post but haven't had time to finish it. In the meantime, I want to share a pleasant experience with you.

After Billy Ray's Dad passed away we were alone for a year and a half. We used to have "dates with Mom" where we would just go out for dinner or some place. It was generally fun for us.

The past couple of months Billy Ray started refusing to do some of his activities first with support staff and there has even been some reluctance with us. He had meals on wheels which Larry, his stepfather assisted with today. He was a bit hesitant to go for some reason. I finally asked him if he wanted to have a date with Mom when he came back and he was eager. He quickly decided to change clothes and go with Dad for his meals on wheels. Larry said he hugged several of the older ladies on the route and was quick to show Dad which house to turn to. Larry made a big deal of him needing to show him where to go and BR loved it.

When they came back I gave him his Nexum and stalled so he'd have it 30 minutes before eating and then we went to the Mexican restaurant here in LaPine. They are good to him and he loves the food. I don't know when I have seen him eat so well. He was calm the whole time and you could tell he was really enjoying himself. The old charm was definitely present in him. He even engaged in a bit of lunchtime chit chat which is rare for him.

On the way back, I was remembering something one of my granddaughters said and told Billy Ray this little story. One of our daughters-in-law, Rebecca and granddaughters, Eldora and Alena and I were at the mall shopping and eating. Alena said "I like hanging with your Grandma". I told Billy Ray that our pleasant lunch today made me think of that because I like hanging with him. He got the biggest grin and laughed out loud.

We had so much fun we decided to go to the LaPine Inn tomorrow for lunch. Maybe we will let Dad join us if he is lucky (smile).

Until next time,
Peggy Lou Morgan
My Other Blogs: Amazon Connect and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Yahoo Group

Anticipating Reactions

I was trying to catch up on some of the blogs I read last night. I can really identify with Tina’s post that everytime someone asks her to go somewhere she has to first think of how K.C. will react. It takes planning for every activity that we have to do with our kids to avoid triggers that cause difficult behavior or meltdowns.

I was thinking about how much I have learned over the years to just anticipate Billy Ray’s reaction to different stimuli and situations. Sometimes it is second nature now and I don’t always think to share it with family and staff.

That’s why we started creating our own little community so others would get to know Billy Ray as a person and understand what he needs to be comfortable. We also became aware rather quickly of the places that we could avoid. As in Tina’s post they had problems in the MacDonald’s drive through. We discovered that there are lots of MacDonald’s and service is not uniform. Sometimes it is better to drive past the closest one if another one has better service – can be easier on everyone’s nerves.

We have learned to adapt in multiple ways. Here is something I shared in Parenting Your Complex Child about grocery store struggles:

“An important part of preparation is your choice of store. For example, if your child is really into a specific item and you know that one store will have that item prominently displayed in so many locations you can’t possibly avoid it, choose a store that has fewer problem areas. A moderate-size store may have fewer problem areas for your child. It might be more expensive, but if your child is less likely to go into a behavior and you are less likely to compromise with him to get him out of the store, it might be cost effective. If your child is small enough, you can pick him up to leave, this might be less of an issue than a teenager who throws himself on the floor because he can’t understand why you won’t buy him everything he wants."

“There may be other arrangements you can make for minimizing problems with shopping. For example, Billy Ray loves to buy fresh french bread that comes in paper bags. Our favorite grocery store has a bakery and will have the bread fresh at 5 P.M. each weekday. A bakery clerk wheels a cart all over the store trying to sell loaves, and there are numerous racks around the store at that time of day. If I take Billy Ray into the store, he is going to grab a loaf off each rack we walk by and from the bakery clerk as well. By the time I try to get it away from him he has handled it too much or it has been damaged so we have to buy it. It does not keep well, and he eats very little of it once it is home. We really do not need five loaves of french bread. Instead of changing stores, I talked to the manager about what time of day the racks are out and modified our shopping times accordingly.” Excerpt used 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. www.amacombooks.org

Little by little adapting to avoid triggers and stresses in the community does get easier but it takes time.

Until next time,
Peggy Lou Morgan
My Other Blogs: Amazon Connect and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom
Yahoo Group

Our Day..8/16/06

Billy Ray is gradually get back to normal after his sinus and ear problems and adjustment to his support staff leaving. Today he went with his stepfather and our consultant friend, Keddie Wanless, who trained Larry for the meals on wheels route. They are going to do it together. Dad and Billy Ray both seemed to enjoy it.

Recently Brice Stanley, his PA-C, said that Billy Ray could pretty go back on a general diet with a very low dose of his diabetes medication. I think that must be helping his stomach pain because he is needing less and less pain medication.

Overall, it was a good day. We are adjusting pretty well to working around Billy Ray’s schedule and having him do some of the things we have to do too. We are doing extra laundry, which Billy Ray especially enjoys because I am getting things ready for a garage sale at the church. We have not any episodes of agitation for days so he must be comfortable with the changes.

In looking at his journal tonight, I noticed that even though he hasn’t needed extra medication for agitation, his tolerance is increasing. For example, yesterday the television in the living room acted up and it took Larry a while to figure out the problem and fix it. Billy Ray just went with the flow and no agitation. That probably would have been very different even a few weeks ago.

We seem to be getting smoke from the forest fires here in Oregon even though we are quite a ways from it. Billy Ray and I are both sneezing. Apparently, many people are getting sick from the air.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Blog and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom
Parenting Your Complex Child Yahoo Group

Catching Up..8/15/06

I feel a bit out of touch with all of you. We haven’t shared much lately nor had a chance to read many of your blogs. It is definitely time to catch up.

As you know our support staff quit almost two weeks ago. Whether it is the end of an extraordinary great relationship for Billy Ray or one that didn’t work well there is always an adjustment period when you lose a staff. You wonder if it is worth going through it again because of the loss for Billy Ray, time involved in training, the inconsistency that always occurs at least at first which adds to BR’s agitation, various employee-employer issues, etc., etc.

In Parenting Your Complex Child, I wrote:

“With all this to consider, you may wonder whether it is worth it. I have been there many times. The reality is that if your child requires one-on-one supervision, sometimes on a twenty-four-hour basis, and her care is exhausting, you need help. You can only live sleep deprived for so long. Your marriage could be damaged by an inability to communicate with each other. If you have other children, you may not be able to meet their needs without help with your complex child. It is difficult to take care of your own medical and dental needs let alone get a haircut occasionally without help. You can work through the difficulty of having in-home staff if you stay on top of the major issues, preventing as many problems as possible before they occur. Be clear about expectations from the initial interview.” (1)

Situations have changed a bit since I wrote that. With the difficulty finding in-home staff, many times you work around their availability. For example, a prior staff had her daughter in a private school and could not start her day here until she transported her daughter. She also needed to be off right on time. It seemed a reasonable request so we accommodated the schedule but it had impact on the Billy Ray’s schedule as well as family appointments, etc.

Many people who do this type of work make very little money so time off is problematic for them. If they are not able to go with you because of their own family needs, it is a financial problem for them if we wanted go to visit family for a few days or we wanted to take Billy Ray to one of my events. We took Billy Ray to one of my conferences early last summer. The then employee was a single mother who struggled to provide a private education for her daughter. She missed a day and a half of work because of it and I felt guilty the whole time we were away.

In my book, I suggested “If your family can endure it, I recommend you work on getting your child more focused and at least started on a comfortable schedule before getting more help. If you bring in outside help who are unfamiliar with your child, they may not maintain the routine you are trying to get your child you used to. That can disrupt the process for a while.” (1)

In a sense, I didn’t follow my own advice. Last summer Billy Ray had just gotten out of the hospital from the crisis summarized here and referenced various other places, still very sick when we hired our last staff. The entire family had come through a very traumatic experience. It has been necessary to make changes in routines and procedures periodically because of Billy Ray’s experience. That is difficult for Billy Ray and for staff as well as family at times.

I still feel Support Staff are a Valuable Resource. However, hindsight is 20-20, it might have been better to regroup with Billy Ray than to start a new staff right away. Thus, we are going to take our time and think things through before starting that.

Additionally, Billy Ray is going to have surgery for his GERD (acid reflex) next month. He is finally physically stable enough that we can go forward with that. This should reduce his abdominal pain considerably.

Once he has recovered from that we can get him on schedule before we decide how much help would work for our family. Sequence is important to Billy Ray as discussed here. It will be easier to get him established in his sequence and then train staff instead of having to retrain them when he is more physically ready to restart his schedule.

(1) 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. www.amacombooks.org

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

We're Still Here...8/8/06

It is a little crazy around our house. We no longer have an in-home support person since last Thursday. I'm not going to elaborate except to say there is always an adjustment when there is a change. Actually we are doing pretty well at readjusting.

I put a new visual up today on my main website Going to the Clinic if you are interested. It is the update since we moved from Portland to LaPine. It is just took me a while to get it posted.

I just finished an article for the PTA magazine, not sure when it will come out. Club Mom has more of my articles up. I am doing more articles while I am in with Billy Ray while he goes to sleep at night. That's how I got my book written so I'm used to working around his schedule.

I will try to get more regular with my blog again but I will probably be doing it at night after Billy Ray goes to sleep instead of first thing in the morning when support staff used to arrive.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Connect and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom
Yahoo Group

Entertaining with Billy Ray

I thrive from entertaining. It does not need to be glamorous parties. It can be a couple of friends over for a simple dinner. Billy Ray shares that love of entertaining and we have done it together since he was little. I wrote about it regarding the holidays here but it is the same principal of adapting and communicating.

Last Wednesday night we were honored by having Billy Ray’s primary medical provider Brice Stanley and his wife Michelle, Angie Enos who is the Physician’s Assistant who backs up Brice for Billy Ray when he is away, and a medical student who is thinking of doing a study on Billy Ray for his thesis as our guests. I thought it would be good for all to see Billy Ray in his own environment. BR loved it.

Billy Ray and I made the punch together. When we saw Brice and Michelle pull up I supported Billy Ray in opening the door and saying welcome. He bloomed with joy. Then we cued him to use contact to ask each if they wanted punch. Instead of repeating the cue he said “yes” but they got the idea. Together we filled punch glasses half full so that he could carry them and he delivered each with pride. Billy Ray was proud to show his room to his “Dr. Brice” and clearly enjoyed sitting next to him at the table (I was on the other side, cutting meat, etc.).

I wish that I had taken pictures. The thought occurred to me but I thought that maybe Brice might not want to advertise his visit since he clearly can’t go to every patient’s house. Later he said it was fine to share and that he had enjoyed it a lot too.

There is no time that Billy Ray and I work together as well as when we have the common goal of preparing for company. He has that social bug just as much as I do. During the time between the death of Billy Ray’s Dad and our remarriage to Larry, Billy Ray and I entertained frequently. There is something about it that energizes both of us to go on with our day to day routine.

There is so much that he can do. It is motivating to him to control his habits (such as putting his fingers in his mouth while putting clean dishes on the table). We actually only have to stop and rewash his hands only a few times when cooking and setting the table.

We have not entertained much in the past couple of years because of Billy Ray’s illness, moving, my book, etc., etc. but it was so revitalizing to do it this week, we are motivating to try again soon.

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

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