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
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

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)

Club Mom Articles
Parenting Your Complex Child Yahoo Group