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

That Nagging Question Reappears

I have been working on my new book about transition planning. One of the chapters is titled That Nagging Question (what happens to my adult child after I'm gone?)

On New's Year Eve I started having breathing problems and had a horrifying ambulance ride. Needless to say no matter how prepared I thought I was that nagging question haunted me all night. They think I had a small heart attack and may have some blockage. As a result, I have been thinking more things through and making notes which I will share with you here as I can and in my new book.

At noon today I have a stress test and another test tomorrow. I will try to post how we are doing on my Lighthouse Parents Blog. If I end up having surgery my pastor is going to post on that blog to keep folks updated on how we are doing.

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

We're Still Here 11/09/07

While it may not seem obvious, because I haven't posted for a while, I am working on support for parents of adults with special needs. AMACOM Books has given me the go-ahead on a new book, tentatively titled The Never Empty Nest, which deals with adults. More to come on that later.

In my last post I talked about the importance of having someone to "hold the story". I mentioned one of my step-granddaughters who seems to have a close relationship to Billy Ray. Again, I want to say that he has good relationships with others in the family but this one just seems a natural. Elora is also older.

Elora was here for a long weekend so I got a chance to talk with her about my thinking that she would hold Billy Ray's story and what that would mean. She loved the idea and I thought showed great understanding of it. I noted that she involved Billy Ray in activities even more than usual. He is very responsive to her and it works well. Above are two pictures of them making ice cream punch together.

I am working on an article about teaching younger kids and adults to simplify housekeeping tasks using products like Swiffer. I will post a link here when it is on my website.

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

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

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
Parenting Your Complex Child Yahoo Group

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