Big Shoes (Paws) to Fill - New Service Dog

It is not clear to me what the various feeds pick up. I know that my Amazon blog is not picking up the video but I'm not sure about these pictures. If you can't see the pictures just click on the link to the blog it's from and it will take you to where you can see the pictures.

This is Tonka (yellow lab, named because he is the biggest and most fun of the litter), who is 9 weeks old. He is going to become Billy Ray's service dog when he is about six months old. We are going to visit him this weekend.

This time we are going to do things a little different because of Billy Ray's health and my schedule. The breeder (whose name and contact information I will reveal when she is ready for that) is going to do more of the basic training before I start working with Billy Ray and Tonka at about six months old. As I have been taking notes and talking to the breeder about what is important in terms of training, I have been thinking about what Billy Ray (and all of us) has gained from his dogs and what we have learned.

Dogs have been important to Billy Ray. His first experience with a dog was in foster care before we adopted him at 15 months old. He was a little much for my older poodle on placement so the veterinarian selected five month old Katie for him.

Together Katie and Billy Ray, then about 4 years old, went through basic dog obedience training and he learned how to handle her pretty well. He had her from the time she was 5 months old until about 14 years old. She was a pet not a service dog but she made a real difference in his life.

As Katie was aging, I began to look at a replacement. I looked into the idea of a service dog but couldn't find appropriate trainers. Somehow I found Dana PawsAbilities in northern Washington state. Her organization is primarily obedience training not a service dog trainer but she took time on the phone to give me tips for making it work. I remember the first thing she advised me to figure out was what jobs the dog would be expected to do for Billy Ray. I don't know why Dana didn't get impatient with me given it wouldn't benefit her business but she was always helpful.

Thanks to Dana's help and Carolyn Jones, 4-H leader and friend, who found us what was to become the perfect service dog for Billy Ray, we had several good years with Sheba. We took Sheba almost everywhere with Billy Ray. His support staff took her with him to his school program and other activities. The picture below is my favorite - he is shredding papers at Silver Falls School District Office and she is right there comforting him.

Unfortunately, Sheba, while perfect for Billy Ray had one flaw, she loved to chase cars along our fence when they drove onto the neighbors property. She injured her leg. We treated it for a long time and it was felt that surgery wouldn't help. Eventually she couldn't work with Billy Ray but remained a pet until there was nothing else that could be done to keep her comfortable and we put her down.

Enter Penny Lane who was in foster care with Heartland Weim Rescue and we heard about her through our friends Cliff and Shela Nielsen . Through a chain of events and the fact we had a friend's son coming home from college in Olathe, KS and could transport her Penny Lane came to be Billy Ray's next service dog. She was the dog no one wanted and was at risk of being put down because she had problems with her ears and was partially deaf. I had provided similar care to Katie when she had problems with her ears so was not frightened away from Penny Lane. However, what I didn't realize was that Katie was well trained before her ears became and issue and we needed to provide more extensive training to Penny Lane because she was a service dog whereas Katie had been a pet. Training for Penny Lane has not been very successful and she has become much more of a pet than a service dog.

However, Penny Lane has contributed to Billy Ray and to me in ways I could have never trained her to do. We got her about a year before Billy Ray had the health crisis and ventilator episode shared previously. When he began go through breathing changes which have never been thoroughly diagnosed but he appears to literally stop breathing and Penny Lane somehow senses it and comes to get me. I can sleep because I trust her to monitor it. I wrote about it here .

Below is a picture that shows the relationship between the two. He doesn't really want her to sleep on the bed because she lays on the covers and he can turn over as well. However, this one morning he was dressed and went back to bed and crawled up beside him on his other pillow. He covered her up and fortunately this was one of those Kodak momemts I didn't miss.

As a rescue dog her exact age was a guess. It was suggested that she might be 2 years old but our vets have suggested she was probably 4-5 years old when we got her nearly 5 years ago. She has had multiple health issues the entire time but she has been manageable. Her weight has been a constant struggle and it was just believed that Billy Ray gave her too many bites (which he does) but it was finally discovered that she has a thyroid problem and we have been treating that. However, recent tests performed show that she has liver issues as well. She is being treated for both and is on a special diet for the liver issues. Her vet advised that we would probably be able to maintain her another year but two years was stretching it.

Thus, it seemed time to consider a new service dog. There are now service dog agencies that we could work with but because it is used a specific way for Billy Ray and I want to work with it myself, we are going through a breeder we know. I hope to share on pictures and video blogging when we get started training.

Until next time,

Peggy Lou Morgan

for a complete list of my blogs and sites see www.peggyloumorgan.com

Our Latest News 4/6/09

Hi Everyone:


There is a lot going on right now and I have wanted to touch bases with you for a while.

First, Billy Ray is somewhat the same as when I last posted. He still fights chronic pancreatitis but we are learning to anticipate pain and catch it as early as possible so he doesn't need the stronger medications for pain. The surgery (Nissan) done in September 2006 which sort of fixed his high degree of acid reflex was checked last week and still in place but he is getting reflux again and it is the cause of periodic choking episodes.

He has good news and bad on the service dog front. The present service dog is experiencing health problems of her own and will have to be replaced within the next year. I have ordered a Yellow Lab puppy which he will get at the end of summer and we will start training her to work with him.


Parenting an Adult with Disabilities or Special Needs seems to be getting pretty good reviews already. I am truly pleased by them. Here are two: Autism Learning Felt and Specialchildrenabout.com .

Thanks to Amazon, I am able to combine the feeds for my blogs in one. If you'd like to read all the recent posts for this blog and Parenting a Complex Adult you can go to the Amazon blog and get them in one location.

Until next time,
Peggy Lou Morgan
www.peggyloumorgan.com for a complete list of sites

Communication by Behavior (Reading the Signs) Revisited

This post is revisiting a topic I have covered several times in different ways since the beginning of this blog in 2005. It seems important to touch on it again because several parents have emailed about their frustration relative to their child’s behavior. A common line is “we are held captive to his behavior” or “it is impossible to plan anything because we never know she will respond”. Many want to know what medications Billy Ray takes or what medications will treat behavior problems with their child.

I am not anti medication but we use the very minimum necessary. I have found over the past 24 years of being Billy Ray’s Mom (he was adopted at 15 months old) that medication is a last resort for behavior issues. What works for us is reading the signs relative to his behavior. Two posts on this topic are Change is Coming – Reading Your Child’s Behavior and Reading Signs in my Complex Son. There are many others under the label Communication by Behavior.

When you allow your child to show you what he needs to feel safe and comfortable and adapt his environment, schedule, etc., etc. as close as possible to his comfort level life becomes much more comfortable for him and for the whole family.

Some have written that it is not fair for one member of the family to have things his way. I do understand that feeling. For me, it came to a point that I learned what Billy Ray can and cannot incorporate or understands. His logics are not mine. If he is confused by an aspect of the routine or environment we can get stuck and ruin a day or even longer periods of time. By doing things the way that he can understand or accept, it changes the flow of whatever we are doing. If that means we have to do things differently than another member of the family wishes but we will not get stuck it might well be worth it, depending on the situation.

Others have written that they don’t have time for the documentation, etc. suggested in Parenting Your Complex Child. My response is that being stuck with meltdowns or behavior issues takes more time than we realize. When we learn to read the signs, adapt to the child’s needs and communicate the child as he or she is to the professionals involved, it changes family life as well as the child’s. It takes time and initially a lot more energy than we might think we can muster but in the end it saves time, energy and frustration. It is really a choice of how you will spend your energy and that of your child and how much frustration you can cope with.

As aside, I am not keeping the blogs up the way I want, slower to answer email and moderate comments because I am getting more email and comments these days. I have decided that is partly my fault because many of the things I would respond is already on the blogs but hard to find because it has been archived by date. I changed the blog template today and am in the process of labeling every old post by categories. If you have any suggestions or comments please let me know.

Until next time,

Peggy Lou Morgan
For a list of my blogs and websites see www.peggyloumorgan.com

Great Article re Siblings of Children with Special Needs

The New York Times Well blogs had a piece on a report done by National Public Radio on Marissa Skillings, a 15 year old whose 11 year old brother, Andrew, has Asperger’s syndrome.

It is great to see stories like this one that bring out the struggle Marissa (and many others) experience as siblings yet clearly show that she loves her brother as he is. It is not easy to live with his noise and meltdowns but as she says if he was different he wouldn’t be the Andrew she knows and loves.

Since so many people with disabilities were housed in big institutions for decades society really doesn’t have much understanding about what life is like for the person or her family. As we share with the media or just friends what we experience, including the joy, it so enhances awareness and acceptance by the community.

Until next time,
Peggy Lou Morgan
Author of Parenting Your Complex Child (AMACOM Books 2006) and
Parenting an Adult with Disabilities or Special Needs (AMACOM Books January 2009)www.peggyloumorgan.com (for a complete list of websites and blogs)

Interview with Billy Ray on AM NW

I was looking through some things this morning and found the video of an interview I did on KATU's AMNW program in September 2007. This interview is the only one that Billy Ray has participated with me and I thought you might like to see it. We couldn't get it to upload on the blog but put it on youtube here if you want to watch it.

As some of you experience with your children, sometimes you just never know how he feels about things. KATU is the station we used to watch when we lived in the Portland area so he was familiar with most of the news anchors. One of the hosts for AM NW used to be the anchor of the early morning news and he called her "Red" because of her red hair. He was so spellbound that he didn't say a word in the interview and wouldn't talk to anyone else the whole time we were waiting.

He called my first book that "damn book" I guess because when I was working on it I couldn't do everything he wanted me to do. One day we were in the bank drive up window and he wanted to know where we were going I told him what he was going to do with Dad and that I was going to go work on my new book. He said "tv" so I asked if he wanted to be on tv again. His response was "tv- go puter, work" and he repeated it daily until the new book was finished. Apparently he liked it.

Until next time,

Peggy Lou Morgan

http://www.peggyloumorgan.com/

Wellsphere - a Valuable Resource on the Net

I am so pleased to invited to participate in the Wellsphere internet community. There is so much for everyone on this site. I urge you to take the time to review the various communities and resources available there. Resources include blogs on many different topics as well as communities on more topics than imaginable.

This blog will now be carried on the Autism Spectrum community. There also communities for Down syndrome, Adhd, bipolar and many more.

Many types of experts are available for you to inquire from depending on your particular interest. You can set goals for you or for your child and they will send you tips and encouraging reminders if you wish.

Wellsphere has a new Health Maven program where you can ask questions re your various interests for you or your child. They describe Health Mavens as: “Health Maven is the term we use to describe the carefully-selected, knowledgeable, health and healthy living experts who volunteer their time to help support community members by answering their health questions and concerns. Health Mavens include doctors, nurses, psychologists, personal trainers and nutritionists, as well as patient experts and opinion leaders. Health Mavens are wonderful, caring people who are committed to helping others live healthier, happier lives.” I was very pleased to be asked to be a Health Maven for the Autism – Autism Spectrum Community. You can read more about this program here .

I'm so humbled by Wellsphere's award to me of the Top Health Blogger Badge (displayed on the sidebar).

Take a look at their site for yourself - there is truly something for everyone there.

Until next time,
Peggy Lou Morgan
For a complete list of my sites go to peggyloumorgan.com

We're Still Here - 12/1/08

Hi All:

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

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

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

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

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

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

Who Needs Training Children or Adults with Special Needs or the Community

Most parents who have children with special needs understand all too well what happens when there is confusion over “what we doing” or “where are we going”. Many of us spend hours preparing schedules or visuals to help prepare our kids for understanding what is expected. Changes can create such confusion for our child that he or can have a meltdown, sometimes in a public place, or in refusal to go or to do what is necessary. Some parents have said it feels like being held captive to our child’s reaction.

It seems there is a misunderstanding between everyone involved at times. A child may seem to be unreasonable about his need for consistency. To the outside world a minor change in schedule is a part of life. Flexibility to go with the flow of life is a good trait to survive in this hurried up world but it is not something that is natural to many of our children. A pediatric neurologist once explained to me that when you change the routine of a small child they will get hyper but if you change Billy Ray’s routine it is like taking him to a foreign country where he doesn’t understand the language. The confusion is overwhelming to him so he might flop on the floor unsure what to do next. He can literally get stuck.

Inconsistency from all parties involved impacts the situation greatly. If parents don’t adapt the plan to what will work for our child as an individual and prepare them for an event or task, it is less likely to work. I have been more aware of the fact that Billy Ray lives in a world of people who are less regimented than he needs to be and have their own lives full of demands and details. If he is waiting 30 minutes because someone is late they may have little concept of how confusing that is to him.

I wrote about the temperamental mismatch that Billy Ray and I experienced relative to organization here. Having worked through that with him substantially it has become obvious that he has somewhat of a mismatch with other significant people in his life and the community as a whole.

Maybe it is just me but it seems that the lack of understanding and actual intolerance is growing rather than the community awareness we advocate for. We have a Catholic Church getting a restraining order to keep a 13 year old boy with Autism away from their services. I have written about that on my other blog here. If even churches fail to adapt to the needs of members who have special needs how can we expect family, friends and the community to.

To compound it we have radio talk show host, Michael Savage describing Autism as "A fraud, a racket. ... In 99 percent of the cases, it's a brat who hasn't been told to cut the act out". See here for more details on his comments.

Thus, the question of the post title who needs the training, the child or adult who experiences special needs or those who don’t experience special needs. The sad thing to me is that it is sometimes easier to adapt and teach people with special needs than to teach tolerance and acceptance to some who don’t have that experience.

Until next time,

Peggy Lou Morgan
www.peggyloumorgan.com
www.lighthouseparents.com
www.parentingyourcomplexchild.com

and blogs at:
http://parentingacomplexchild.blogspot.com
http://parentingacomplexadult.blogspot.com

Fireworks and Autism

Hi Everyone:

Happy 4th.

I was thinking that probably many of us have loved fireworks and had to forego the tradition if our child experiences Autism.

As a child, it was great fun to go to my Grandma's in Weiser, ID because we could sit outside in her yard and watch the fireworks. It was a family tradition both for me and for Billy Ray's Dad. However, after we adopted Billy Ray we found he couldn't tolerate them at all. We thought it scared him. Since he didn't get the Autism label until later in his childhood than most we didn't understand that the noise is intolerable for many who experience Autism.

One year Billy Ray and I went to spend the day with my secretary and her family who were camping on the Oregon coast. They begged us to stay and see the fireworks from a ship on the ocean. I said that Billy Ray couldn't handle it. They told me that the noise was muffled by the water so I decided to try. We loved it. If you ever get a chance to try it for your child who can't handle the noise, it's worth the effort.

Until Next Time,
Peggy Lou Morgan
www.peggyloumorgan.com

Comments - So Embarrassing

I just came on Blogger to write a post on fireworks and found I had 14 unapproved comments. I don't know why I haven't received notices on on them and some of them are really old. I am so sorry about that. I have been recovering from my little episode on New Year's Eve (see past posts) and finishing my book so I have gotten behind on blogging but normally Blogger sends me a notice when I have comments to approve.

When I was checking them off I came as approved and came to one I wanted to reject and when I clicked to reject just one it apparently rejected the ones checked. They have changed the system on me. If I rejected your comment accidentially I am sooooo sorry please comment again and I will watch Blogger better.

Until next time,
Peggy Lou Morgan
www.peggyloumorgan.com

World Autism Day

This morning I turned CNN on and discovered a program in process titled We Have Autism. We do have a tivo but I was not able to rewind to the beginning. Additionally, our satelite feed for CNN was not working well so I missed a lot with the fuzz. However, I loved what I saw and it struck me that it was very positive in terms of showing treatment and hope. There were none of the desperate feelings expressed in video such as Autism Speaks. This presentation gave real hope for meaningful lives for children and adults who experiene Autism.

A comment made by one of the mothers that once you become the parent of a child who experiences Autism you become a parent of all children who experience Autism really struck a chord with me. That has been my experience to a substantial degree. Once I became Billy Ray's Mom I found a deep concern for the acceptance and oppportunities for all children who experience special needs. We become one in so many ways.

I am thrilled that we have a World Autism Day. I hope that somehow we can spread that not just to Autism but to all who experience disabilities.

I am sorry I have been so delinquent in writing. I am physically improving from my New Year's Eve episode and getting stronger. My blood pressure is responding to medications. I am getting anxious to get out there speaking and meeting all of you again.

I will do an update on Billy Ray in the next day or so. Also on my writing and my new book.

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

Update 1/07/08

Some of you have written wondering what is going on with us.

Billy Ray is doing pretty well and I have been trying to finish my new book on transition planning. However, that all changed on New Year's Eve when I started having breathing problems.

After a terrifying ambulance ride I spent the rest of New Year's Eve and most of New Year's Day in the hospital. The doctors think I had a small heart attack and may have some blockage. I have a stress test scheduled for today at noon and another test for tomorrow. If they find blockage I will have to have surgery.

In the meantime, if you want to keep track of how we are doing you can go to Lighthouse Parents Blog . I will try to keep that one up. If I do end up having surgery my pastor is going to put notes on that blog to keep people up to date.

Until next time,
Peggy Lou Morgan
For a complete list of my sites go to www.peggyloumorgan.com

Politics and Parenting a Special Needs Child

This post is not intended to endorse one Presidential candidate or another. Perhaps more than any other election since I first voted I am torn about what stance to take. I would like to hear from my fellow bloggers and readers what you consider in deciding who you will vote for.

There are so many issues. Each of us has reasons as to why certain ones will take priority for us individually. For example, as a Christian woman who has experienced infertility issues abortion is high on my list. However, I am very concerned about terrorism this time too.

In our little berg, which has just become a City, I worry about forest fires but felt safer from terror threats. That is until recently someone attempted to sabotage a train carrying hazardous material very close to our home. Fortunately, protection measures had been set in place. A rail car was ahead of the train carrying the hazardous material and caught it. The train was able to stop before derailing. The same type of thing was tried a couple of weeks later at another nearby town.

This past weekend the news reported that Hillary Clinton is planning to seek additional funding for Autism research if elected President. I have been trying to explore what the other candidates have to say or their records relative to programs relative to disabilities. I have not been able to find much information. On the other hand, is that a reason to support a candidate that we might have other concerns about?

There is so much to consider in this election.

Until next time,
Peggy Lou Morgan
For a complete list of my other blogs and websites go to www.peggyloumorgan.com

Jean Baton Swindells Resource Center

Several months ago I got an email from the Swindells Center in Portland, Oregon asking me if I would consider speaking at one of their educational series events. What was followed was an exciting sense of finding a kindred spirit in this organization. We share a desire to enable the parent(s) to become the leader of their child's team not them into systems that may not work for their child as an individual.

Swindells Center was created because of a gift from Bill and Ann Swindells, whose daughter Jean experienced Downs syndrome. They supported the creation of the Center because they didn't wish other parents to experience the difficulty in finding resources that they had experienced. When I heard that I could so identify with that purpose because that's why I wrote Parenting Your Complex Child - not wanting other parents to go through the struggle we have.

Swindells' Director, Anne Saraceno, is bubbly and obviously full of energy. During dinner before my presentation last Tuesday, I could hear her total understanding of what parents experience and commitment to supporting a better life for the whole family who experiences special needs. I saw the same commitment and understanding in Mary Halvorson, Education Co-ordinator.


Swindells Center is housed in Providence Child Care Center which is a part of Providence Hospital . They also have centers in Medford, Oregon and Hood River, Oregon. To my delight, I learned that they will be opening a new center in Bend, Oregon near me sometime before the end of this year. I will post more details for those in this area as I learn opening date, etc.






One very helpful thing Swindells offer is a Life Care Notebook and Organizer free to Oregon parents and available to out of state parents for $20.

The loose leaf notebook contains a place to list your child's care needs, medical history, etc. It comes with dividers and a place for business cards. It is easy to modify according to what works for your child's information. If your child is older or has more intensive medical history it would be easy to insert a document similar to the Abbreviated Chronological History I do.

Mary shared with me that a Mom had been in training and completed the care notebook for her child. On the way home from the training she became very ill and had to be rushed to the hospital. She was able to hand the notebook to her husband, who had to work, so it could be used to care for her child. Without the notebook the child would probably have had to go to a medical foster home during the mother's hospitalization. With her care listed he or she was abled to be cared for at home with much less stress.

If you'd like to order this valuable tool you can call Swindells at 503-215-2429 or email Swindells@providence.org . You can also download it by clicking here for free. The advantage of ordering from Swindells rather than downloading is that they will send it in a wonderful binder/organizer and will be able to help you individualize pages to your needs. Additionally, they will register you to receive updated pages when available.

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

Memory Video - Comic Relief

I haven't been able to post video since I wrote last because I have an ugly infection just below my eye. I can't use makeup for probably a week. I have notes written ready to post several as soon as I can. In the meantime, here is a funny video that we can all identify with especially if we have been in survival mode with our kids for a while. It was forwarded to me by a friend and there is no copyright information or information about who it is.

8/18/07: As you can see someone has left a comment that this is Tom Rush. The song, The Remember Song, is performed by Tom Rush and written by Steven Walters. This video is also on his website . I wrote to Tom's website and they have given me permission to leave the video up. According to their email it is on YouTube and has been viewed over 3 million times. I think that is because we can all identify with the sentiments of it.

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

News from Our Homefront

Most important news is that Billy Ray seems to be doing better physically. His gastric surgeon started him on some medication that seems to be helping his intestinal issues a lot. Additionally, his primary has been treating his sinus and yeast infections with a variety of things and we finally seem to have turned the corner there.

AMACOM Books has just agreed to publish my second book. They do not like my title so I will not mention it until the Title Committee gets to play with it for a while. The book is about adults with special needs. It will include transition planning, creating an adult life that works for the individual, and some on estate planning. More news to follow, as we know it.

My stepson once said of his now deceased Dad and me “it’s 1992 and my parents just got a VCR”. I have been behind the times with computers and other technology forever.

Fortunately, I seem to be surrounded by people who know more than I do and are patient teachers. My husband, Larry, is a bit self taught as I am but seems to get this technical stuff so much better than I do. Both of his sons have helped in many ways. Michael has helped me to figure out Power Point and Mark helped to use my favorite planner (Franklin Planner) with a Palm Pilot. My literary agent and even my pastor have lots of computer, internet knowledge and are great helpers. That being the case one has to wonder why I go into the computer age kicking and screaming as I do (smile).

We have been looking at uploading video to my websites for a long time but it was complicated because the website host didn’t store it. You had to have separate entities involved. Recently I noticed an upgrade from my website host that makes uploading of video to my websites as easy as uploading pictures which I have finally mastered. Thus we have been doing some practice video blogs and have created a page on my newest website to put them on. On that page there will be links to video posted on other sites as I do them.

In the meantime, Pastor Richard, has been playing with video on his own blog and uploaded last Sunday’s message this week. Following his lead, I practiced on my Lighthouse Parents Blog with some footage we had shot of Billy Ray’s enthusiastic greeting of folks during Friendship and Worship time at church. You can see it here. Thus, we will be able to do video blogs right on my regular blogs. I hope to begin doing that this week.

One of my colleague blogger/authors took some flack for having things unrelated to special needs on her blog. I understood her desire to be known as she is and also the frustration someone might feel if they were searching for help on special needs and found personal things about the writer. Thus, I have decided to do a personal video blog on my new website, which will include some things that are not directly related to Billy Ray or special needs. No video has been posted there but will be very soon. I am excited to be able to just turn on the camcorder and chat with all of you.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting a Complex Special Needs Adult and Lighthouse Parents
Websites: Parenting Your Complex Child, Lighthouse Parents and Peggy Lou Morgan.com

Club Mom Articles
Parenting Your Complex Child Yahoo Group

Billy Ray and His "Girls"

I hear from other parents about their sons noticing girls but it hasn't been much of a factor with Billy Ray until recently. He did have a little girlfriend (we'll call her Debbie) in kindergarten until 7 th grade when we moved away but I think that was more her thing and her parents' thing than Billy Ray's.

The school program that they were in was a three year program. Debbie was a year older so she would move on a year before the end of each section. He didn't really talk about her during the years they were apart unless someone asked him if he had a girlfriend. He called her his "girl" but didn't seem to have any concept of what that meant . By the time he got to sixth grade, she was ready to get married and talked about it a lot. He didn't seem to understand and I let it slide.

After his Dad died I did take Billy Ray and Debbie for outings such as movies or the beach on the weekends.

I realized that she might be getting some encouragement when her parents dropped her off for his birthday party and wanted to tour the house. Debbie's mother asked if they would get to keep the house when they were married. My jaw dropped. Billy Ray was not even 12 yet.

He has always liked ladies but generally paid more attention to plus sized ones like his mom. He gets very attached like a child would to a favorite aunt or grandmother. However, I have noticed lately that he is noticing young girls closer to his age (24 years). He is smiling and looking.

He used to get a kick out of hugging Michelle, wife of his primary care provider, Brice Stanley. Then he would giggle when Brice would tease him about hugging his wife.

Yesterday, we were walking out of Brice's office and I heard Brice say "do you want to say goodbye to her?" I wasn't paying attention, I had his elbow and we were walking out. I looked around and he was grinning at a pretty young assistant behind the nurse's station. I told Brice I had noticed him noticing pretty girls lately. Brice reminded me that he is a 24 year old man. Dah! I get so busy taking care of all his needs I sometimes forget he is a young man after all.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting a Complex Special Needs Adult and Lighthouse Parents
Websites: Parenting Your Complex Child, Lighthouse Parents and Peggy Lou Morgan.com
Club Mom Articles
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Differently Abled

Today is one of those reflective days where I am mostly contemplating random thoughts while trying to catch up on household things that have been neglected while finishing some other projects.

My friend sent me the link to Monica Moshenko’s radio program Disability News Radio. During a break from cleaning I listened to some of Monica’s interviews. I loved how she started the program with a discussion of the word disability. She said that we should focus on abilities not disabilities.

Going back to my work I remembered my November 2005 post The R Word – Retardation. In that post, I shared how we told Billy Ray that retarded just means slowed and we are all retarded in some ways. My friend countered that post with showing me a picture of her client pushing her stalled car with his electric wheelchair, which I put in Who's Tarded.

Since writing those posts I heard (or read) someone say “differently able”. Sorry, I don’t remember where that came from but I love it and totally agree with it. We all have abilities and disabilities.

In a building where Billy Ray and I went to see his doctor, we frequently rode the elevator with a man in an electric wheelchair. Attached to the back of his wheelchair was what looked like a cooler and contained bags with coffee or sweet roles labeled with the customer’s name. He didn’t talk but appeared to understand well. It appeared that his only movement was his right hand which could run his electric wheelchair and use a baton to push the open door or elevator buttons.

Apparently a coffee shop near several buildings had a service where clients could call in and this man would deliver the coffee. Customers would reach into the cooler to get their order. You would see some of his customers meet him at the elevator or holding open the doors to their offices so he could come in. He would squeal with a joyful greeting with each one and the customers seemed to thoroughly enjoy seeing him. Many times in the winter his plastic raincoat would be dripping from our Oregon rain. It never seemed to dampen his joyful mood. Clearly he loved his job.

Unless someone saw this man actually doing this job they might assume he had no abilities and they would be very wrong.

Today I am reminded that we all have more ability in some things than others. New technology is not our thing around here. If software or equipment works, I have no desire to upgrade and learn all over again. Case in point, probably a year ago Larry’s cell phone and the one we keep for Billy Ray’s support person to use when they take him out had to be replaced. My cell phone was more than four years old but it was comfortable and still working. In April it stopped holding a charge and had to be replaced. The new one came with an ability to shoot videos and photos. No desire to learn to use that when I could stay with digital camera I know how to use. That is until yesterday!!

Yesterday, Billy Ray bented his new eye glasses and so we made an unexpected trip to Bend to get them fixed. We were in Bend at lunch time and he needed to eat so he could take his pills.

We took him to Red Robin. There is a Red Robin in Clackamas near the Kaiser Permanente where he often went for lab tests or medical appointments. He loves their hamburgers, onion rings and cheese sticks. However, he developed both pancreatitis and diabetes soon after our move to LaPine and we were supposed to keep him low fat. We never told him that there is a Red Robin in Bend for that reason. His pancreatitis is stable at the moment and blood sugar good for the past several weeks. His wonderful primary care provider has given me permission to give him a treat once in a while so we did Red Robin yesterday.

He looks so cute in his new glasses (Dr. Carl Ryan managed to make them smaller, though a stronger prescription, than before) and I also wanted to share his excitement at being at Red Robin after not being to one in nearly three years. No problem we have a camera on this gadget or so I thought. It took quite a while to figure out the camera even though my husband had just figured it out on his phone but, of course, they are all different. Then today I could not figure out how to email them to myself. My husband finally managed to email them from my phone to my computer so I am posting here.

As if to support my feeling of inadequacy technically, Blogger will not let me enter a title to this post no matter what I do and I forgot to upload the pictures before publishing this so had to do it again. At least I discovered that Blogger was having the problem with the title line not me and I was able to add it after a lot of frustration.

If we could all look at a person’s abilities instead of disabilities we might realize how much we ALL have to bring to the world we live in.

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

Adapting and Re-Adapting

In my book, I talked about my struggle to communicate with Billy Ray. I was doing everything recommended by the various professionals and nothing was working. Here is a brief excerpt from that chapter:

“I was taking pictures of each step in an activity and writing text about each step. Some activities took more than one page. The consultant assisting us at the time would say, “You will lose his interest if they are too long.” So I shortened them and tried to “do it right,” but discovered he only responded to my detailed visuals that contained real pictures. Again, you must adapt to your child’s needs and responses, not someone else’s ideas.

“Eventually we got a scanner and Larry scanned everything, even old Polaroid pictures. We wrote stories about various events in Billy Ray's life such as the story of his adoption. These were called Billy Ray’s Stories. He loved having his stories read to him and seeing pictures of himself doing the activities. You have to do what works for your child, period.” Excerpt from Chapter 9, Two Essential Words: Communicate and Adapt, 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/

Billy Ray may be more complicated than some of your children because he experiences medical issues combined with multiple special needs issues. However, I think the principle of today’s post applies to most children and adults who experience special needs. We, as parents, generally don’t have the luxury of continuing to do things for our children because it is the way we have always done things or because of some established program.

It has been necessary to write addendums to the Long Term Vision and Care Plan through our county case manager for the coming year’s funding for in-home supports. As I wrote it, it occurred to me that I am the one changing more than Billy Ray here. Adapting is not a once and for all times thing, at least for my son. Here is a cut and paste to the addendum for the care plan:

“If his mother, and primary caregiver, remains very aware of potential pain, intestinal issues (bowel regularity), changes in blood sugar, assuring that conditions in his environment are not such as to agitate him, etc., etc. Billy Ray is able to function with less of the extreme agitation (physical aggression and property damage) that he was experiencing in the last writing (11/6/06). However, it should be noted that his tolerance for pain, routine and environmental concerns has actually decreased. Mom must be on guard at ALL times to assure that these matters are addressed BEFORE they go into severe agitation or a meltdown. This balancing act requires constant vigilance on the part of the family.

“Community activities are more of a challenge presently. On the one hand, Billy Ray wants to go. On the other hand, he is experiencing a substantial reduction in energy level so major flexibility must be allowed so that he can go out when he is able. This makes scheduling regular activities much more difficult. The only vocational activity he continues to participate in is his Meals on Wheels delivery. He is able to maintain that route which he loves because his stepfather does it alone when Billy Ray is not able to participate. Billy Ray still participates probably 3 out of 4 weeks but it exhausts him sometimes for several days. He continues to do restaurant meals and trips in the car as he is able because these can be done without as much scheduling.”

Whether it is because of physical changes, development or other issues a child is experiencing the need to adapt and readapt is a sure thing.

We are adapting in another way too. We have frequently talked about Billy Ray’s skin issues. (See here on this blog and here on my website for more details on our skin care regime. ) Until recently they were not on his face. He has a heavy beard and shaving is at times a struggle. We talked with the pediatricians years ago about whether growing a beard might be a good answer. That recommendation was that we not do that for sanitary reasons. However, Billy Ray is now getting lesions on his chin and while he doesn’t get lesions under his chin, his neck is gets irritated very easily from the shaving. After discussion with his present PCP, Brice Stanley, we decided to grow a beard because shaving may be causing more problems than it cures.

However, following the advice of our then pediatrician we taught started shaving pretty early. She suggested that we make it fun by having family who would normally give Christmas and birthday presents (his birthday is near Christmas) give him various types of after-shave and supplies for shaving. That way we could find his preference. It worked. He loves Brut and uses it for after-shave and deordorant. Shaving is a part of his bath routine. Thus, we are doing a gotee and he is fine with that as long as he gets to shave and wear Brut. Here is a picture of our start:

I will post another one when he has grown it longer.

Keep Adapting and Re-adapting,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting a Complex Special Needs Adult and Lighthouse Parents

Websites: Parenting Your Complex Child, Lighthouse Parents and Peggy Lou Morgan.com (under construction)

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Parenting Your Complex Child Yahoo Group

Here We Go Again - Update on Billy Ray

I haven’t posted for a while because my readers know me so well and take some of my worries about Billy Ray too seriously for their own kids. I like to be sure about my facts before sharing our struggles. Apparently, I am not going to have that luxury. We are in a struggle to verify Billy Ray’s situation in order to get him appropriate medical care.

Some kids seem to get every potentially bad reaction from medications or their genes. If there is even a .2 percent chance that you will get one condition if you have another one, you might as well plan for it with some children and adults. My son is apparently one of those. Trying to be positive about my infertility, I remember thinking that at least my adopted child would not have to inherit genes from our families that included epilepsy, diabetes, high blood pressure, migraines, and even mental illness. Apparently that was a misplaced hope given all the genetic things we are finding about Billy Ray.

As stated here sometimes Moms (and Dads) just know that there is something wrong even before it is confirmed. I have email to medical providers going back a long time where I said he is better but I still fear there is something we have not found yet. We have dealt with pancreatitis, diabetes that didn’t seem to be effected by diet one way or the other, repeated sinus and ear infections, etc., etc.

In September, he had surgery (the Nissen procedure) for severe acid reflex and seemed to be getting his strength back pretty well. The choking and the breathing issues seemed to improve right after surgery. He started gaining weight, which, at first, seemed like a good thing.

Then all winter it was one sinus infection after another and major bowel issues. Somewhere along the line, I realized he had more thick mucus in his nose and throat even when he didn’t have an infection. He would walk around the room and gag or cough similar to how he did with acid reflex while he was eating but this time no eating or drinking was involved.

I noticed that he was starting to sweat a little, which he had never done even though he tends to wear far too many clothes in hot weather. His energy level dropped rapidly at times. Whereas he used to never stop unless he was extremely ill, he seems to have sprints of energy on occasion but lots of times he seems to have no energy.

We truly have the most thorough and caring medical provider you could hope for but I think he was as baffled by this change as I was.

One day, I called Kate Crowe, genetic counselor, who wrote the foreword to Parenting Your Complex Child. I had called only to tell her that my book was finalist in the 2007 Nautilus Book Awards. She is such a busy lady I usually expect to leave a message. She was there and had a couple of minutes between patients. At the end of our conversation, she asked about Billy Ray and I shared a bit of what was happening. All of a sudden, she told me to hold on and she looked on Kaiser’s computer (Billy Ray had been seen at Kaiser since adoptive placement at 14 months old until we moved here when he was 22 years old). When she came on the phone she said that they had never been screened him for Cystic Fibrosis. Many of the symptoms he is now experiencing didn’t occur until after our move so didn’t trigger Kaiser to screen.

There is more being learned about a possible connection with Down syndrome and Cystic Fibrosis than in the past. I had never heard of that connection before but when I did a Google search for Down syndrome and CF it came back with over a million results. There was an article documenting the connection in the sixties. I don’t think it is that common but apparently it is not new.

So here we go again. His energy level has changed so we have to redo his schedule for things are flexible in terms of time frame and in terms of energy requirement. The one exception is he still goes for his Meals on Wheels delivery most weeks. He is exhausted afterwards but it is important to him to do it.

I will try to keep up more with this blog as we kind of get caught up with his schedule.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting a Complex Special Needs Adult and Lighthouse Parents
Websites: Parenting Your Complex Child, Lighthouse Parents and Peggy Lou Morgan.com (underconstruction)

Club Mom Articles
Parenting Your Complex Child Yahoo Group