Humor is Good Medicine

As stated before, I love the humor of Lori Miller Fox. She has done it again with Toasts with a Twist. Lori also links to 10 Christmas Carols for Parents of Special Needs Children on the specialsneeds.about.com site. Both are great comic relief at a time we probably need it most.

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

Billy Ray's Birthday Party

Our day started out excited and trying to get things ready for Billy Ray's birthday party. By mid morning it was getting more difficult. I don't know if it was the excitement on his part or pain from two folicitis leisons he has in somewhat delicate areas of his body. Nevertheless, we got into a full scale behavior - the kind that exhausts me for days. Thus, the choice was to cancel the party or risk that we could work through the behavior before time for his guests to arrive. I chose the latter because he has not had a birthday party in two years (the first when we moved the day after his birthday and last year when he was too ill). He clearly wanted to do the party. We went forward clearly not able to do everything we had hoped to do especially in terms of housecleaning, etc.

Here are some pictures to share his party with you. Below is Billy Ray manning the door. He loves greeting people.

Hugs abounded. Here he is hugging Denise Lighthill one of his special people.

Below he is making the ice cream punch.

He was more social in terms of interacting with his guests than he has been of late. We were also able to get him to look at the camera and smile. Here (below) Pastor Lighthill was taking the picture and got him smiling for the camera.

His favorite part of his parties (or any one else's party is always blowing out the candles on the cake). Interestingly while he loves blowing out the candles he doesn't really like cake.

In September when we had guests for dinner, a friend brought a birthday cake for his wife (Donna referred to in many posts herein as the cookie lady because she bakes the high fiber cookies for Billy Ray). To our amazement he not only really got into blowing out the candles on Donna's cake but loved the cake. It is a chocolate raspberry that a lady in our area made. I was able to order an identical one for Billy Ray's birthday this year. Here he is blowing out the candles with Sarah looking on.

Below left, he is really getting into opening his presents:

So often we just don't know how Billy Ray will react. It is difficult to decide whether to do events like this especially when the day starts out the way it did yesterday. The alternative is isolation and loneliness. It is worth the struggle to accomplish. I can't ever remember a birthday party where he mingled as well and seemed to enjoy his party as much as he did last night.

It appeared that everyone had a good time especially Billy Ray. The picture on the right doesn't have anything to do with Billy Ray but I can't resist sharing it. This is Billy Ray's service dog Penny Lane and Sarah Henry. Even the dog seemed to enjoy the evening.

Our friend, Dave Peters, brought Billy Ray an assortment of fun things to do including silly straw. He really enjoyed spraying it towards his guests. I regret the pictures of that didn't turn out because he was having so much fun with it.

Denise and Pastor Lighthill brought Billy Ray a large soft textured pillow with sports figures on it. Jeannie also brought him a very plush and soft Koala bear. Billy Ray went to sleep cuddled with both which seemed to be an indication of how the evening went for him. Very rare for him to go to sleep so easy and peacefully.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect , Parenting A Complex Special Needs Adult and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom Articles
Parenting Your Complex Child Yahoo Group

Feelings of Isolation - Adapting Family Events

I am hearing from lots of folks who are feeling isolated right now. I so know what that feels like. I am working on an article about coming out of isolation and the need to create a community that works for your child and the whole family based on the procedures in Entertaining with Billy Ray and The Holidays with a Complex Child.

Today is Billy Ray’s birthday so we are trying to get things ready. There is still a part of me that hates the lack of perfection because I am a “perfectionist messie” but it is better to adapt to what works for us than to stay in the isolation of never entertaining. The need for coming out of isolation has superseded the need for perfection in our home.

I will try to get some pictures from Billy Ray’s party and post them tomorrow.

Merry Christmas to all.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Lighthouse Parents and Parenting A Complex Special Needs Adult
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom Articles
Parenting Your Complex Child Yahoo Group

Articles on My Website

I wanted to let you know that some of the articles I wrote for publicity for my book are being put on Parenting Your Complex Child website. They are not all there yet so check back often. I have several to add.

I also wanted you to know that I am starting a new blog relative to parenting adults with special needs to separate things out a bit. I hope to write on both a couple of times a week at least.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting An Adult with Complex Special Needs and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Parenting Your Complex Child Yahoo Group

What Empty Nest

It seems only yesterday that Billy Ray came to us as a bouncing, bubbly 15 months old. Next week he will 24 years old. The "nest" as they say is not empty by any means. He still needs as much daily care and advocating as he did as a child. He still can't be left alone.

In my blog, Parenting a Complex Special Needs Child, we talk about children and many issues apply to adults too. However, it seems important to separate them now as we transition in adulthood. You may want to check out that blog as well because there may be helpful things for your situation and you can see how we got to this point.

It is my hope that we as parents of adults with special needs can chat about our experiences and support each other in this exciting and difficult time. Please do comment and share how your experiences differ from Billy Ray's and mine. That is not only interesting to me but may help other parents at this juncture in the journey with their adult child.

Not all adults can function within existing systems for adult support. Some can function great in assisted living programs, others can live independently or in group homes and still others will not tolerate a group living situation. Whatever the situation there are challenges that we as parents must assist with. In addition, there is the giantic question about what happens when we as parents are no longer able to assist our adult child.

Let's share our journeys and be a support to each other along the way.

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

Parenting a Complex Child Continues into Adulthood

My email inbox has brought multiple reminders this past week that our commitment as parents to children who experience special needs does not stop with transition into adulthood. Whether an adult child is in some sort of out of home placement, his or her own living situation or still in the family home, we continue to have a higher degree of involvement in their lives than other parents might.

This time of year, I think a lot about Billy Ray’s future. It is time to update files, etc. that I do near his birthday. He will be 24 next week. My mind wonders how we got here so fast. My baby is now an adult.

On Sunday Pastor Lighthill included, in his sermon, an inspirational story of a father doing the Iron Man Triathlon with his disabled son. Dick Hoyt has some kind of raft that he puts his son on for the swimming part of the triathlon and swims pulling son Rick on the raft, Rick is then put on the bike which his Dad pedals for the second part of the race and is pushed in an adult stroller for the final phase of the race.

According to this story Dick Hoyt, at 66 years old, has decided he needs to change to a less demanding race.

Mr. Hoyt is a great example of many parents who help their children to live out their dreams instead of focusing on their own dreams. As parents our focus and commitment changes from what it might have been. We travel a road different than we might have traveled. Who can say, it might end up being more fulfilling than we imagined.

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

We're Still Here..12/8/06

Sometimes it is hard to be open about what we have been experiencing. We fear others will think we’re crazy. We think we are the only one experiencing it so we don’t share. Maybe we don’t all experience the same things but I hope that by sharing, some of you may not feel so alone if you go through what I have been experiencing.

We all deal with periods of what I call the “funk” at some point and in our own way. Some might call it depression. Some call it grief or disappointment. The funk, as I experience it, is often exhaustion for long periods of sleep deprivation. Everything seems more difficult than it normally does.

It is probably not entirely connected to parenting a special needs child. It could be worse if our kids experience special needs in the same way that everyday things of life seem to feel more overwhelming. It does seem harder to pull yourself out of it because it is more difficult to do some of the things that would help (like time for yourself and extra sleep, etc.)

There are seasons of our lives when change seems to be unavoidable. Fortunately when Billy Ray goes through a period of change it is not usually the same time I do. This time we are both going a time of change. I have been dealing with seemingly overwhelming paperwork that has been let go during Billy Ray’s multiple health crises, still unpacking boxes from moving almost two years ago and facing some physical things of my own, mostly normal aging stuff.

Even things unrelated to our kids can seem more overwhelming than they might be. For example, my elderly parents have reached the point they can no longer take care of themselves. It has been difficult to accept the fact that we couldn’t bring them to live with our family. This is not entirely because of Billy Ray. Fortunately my brother has been able to move them to his home. He is bearing the brunt of the situation but it is still emotionally charged.

At the same time Billy Ray was hospitalized with pancreatitis, my father-in-law passed away (these events were less than two weeks before the publicity was to begin on Parenting Your Complex Child. My mother-in-law is incredible despite low vision. Larry goes to visit and raves about how well she is doing.

Billy Ray’s physical health is better than it has been in a while except for recurrent sinus, ear and skin infections. His surgery in September has made a major impact on his health. It does; however, complicate things because it has so strongly affected his appetite. He wants to eat but can’t eat as much as he used to so we do a lot of small meals. . It seems we are cooking a lot more and sometimes for the garbage disposal. On the other hand, he has more energy and wants to do things again. It is a good thing to regroup for him and generally uplifting. However, if you are going through other things in life it can be more overwhelming.

At some point we have to pull ourselves out of the funk. I know that I am ready to do something about it when I want to do certain things like curl my hair or clean house. While those things may not make the major changes in life that is needed, they energize me to do other things.

When exhausted or stressed it is hard to make yourself do even important things. Sandra Felton founder of Messies Anonymous and author of many books, suggests baby steps and using a timer. I use a timer for projects for me and for Billy Ray. It helps a lot because you can make yourself do something for 15 minutes at a time much easier than trying to deal with a total project at once.

The other things that help a lot are the Serenity Prayer and the lighthouse concept which I have written about here and here.

The funk seems to be on growth and regrouping in ways nothing else can. I hate the funk when it starts but it brings on valuable regrouping and growth.

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

Adjusting to Seasonal Time Changes

Time changes to and from daylight savings time is something we deal with every year. It effects Billy Ray and even his service dog, Penny Lane, every time. Both are very routine oriented. Going to bed is the internal time clock not the one on the wall.

If this is an issue for your child, you can try adjusting little things such as dinner time, chores, etc. in tiny increments leading up to the actual time change. It helps to get modification of routine started rather than immediate change.

We got caught offguard this year and didn’t begin modifying his schedule like I normally would. Billy Ray is going through some life changes relative to changes in his chemistry from medications he took for Acid Relfex but doesn’t need since surgery to repair the Acid Reflex, substantially reduced appetite (so we are doing lots of tiny meals) and difference in energy level.

Before our recent time change he was already wanting to go to sleep much earlier than normal. I think that it is because he is eating less since surgery and he runs out of energy earlier in the day. If he does that, he will be up for the day by 2-4 a.m. besides the usual short periods of waking up during his sleep. It takes longer to adjust since we didn’t prepare for it this time.

As in everything the need to anticipate, adapt and communicate applies to time changes.

I don’t remember if I posted this picture before or not. It was snapped about a year ago when Billy Ray had gotten up and dressed, done his daily marching routine and was tired. He crawled back in bed and Penny Lane joined him. He then covered her up for a nap together.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
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

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: http://www.parentingyourcomplexchild.com/ and http://www.lighthouseparents.com/
Club Mom, 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: http://www.parentingyourcomplexchild.com/ and http://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. http://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

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

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
http://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
http://www.parentingyourcomplexchild.com/
http://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
http://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