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

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

Billy Ray and His Clothes Hangers

Billy Ray loves hangers. They seem to have taken on a whole new facet for him in the last few years.

When he was little his Dad used to buy him toy guns. It was not my preference but I felt Raymond should be able to make decisions regarding our son too and it wasn't a big deal at the time.

After Raymond's death and meeting Larry, Billy Ray began watching Larry's John Wayne movie collection. I became increasingly concerned about how realistically he played with guns. He didn't have toys that could be mistaken for real guns but living in a hunting and farming area, I was afraid he would come upon a real gun sometime and not understand it was not a toy. Larry and I talked to him about it and eventually traded him something (I can't remember what now) for his toy gun collection.

Billy Ray was amazingly accepting of giving up his guns but soon thereafter he started playing the "action scenes" from John Wayne movies using plastic clothes hangers as substitute guns. He began taking over the heavier hangers I kept for Larry's jeans if they were left in the laundry room. Soon we had to color code them in order to have any for Larry and my clothes. Billy Ray's were the white ones and we bought him the heavier ones.

Hangers not only serve as toy guns, they are a blaton that he conducts music with when he watches Mr. Holland's Opus and many other activities. They are with him much of the day. Fortunately he accepts that he can't take them out of the house but he wants to lay the one he is carrying by the front door as he leaves the house. As you can see they have a way of sneakng into family pictures such as the above taken last Thanksgiving with four of his "neecees and nefews" (nieces and nephews).


If all of our blogger friends ever got together, I'll bet we could laugh at the various treasures our kids enjoy.

Sorry I have been so delinquent in posting. A lot going on. It seems we have been sick all winter and dealing with my parents' situation. There may be some more medical news for Billy Ray but I will wait to confirm that until we know for sure.

There is some other news about Parenting Your Complex Child. My publisher, AMACOM Books, entered it in the 2007 Nautilus Book Awards Contest and we have made it to finalist. The winners will be announced at the Book Expo America in early June. I am very honored to even be a finalist.

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

The Sandwich Generation with a Special Needs Child

I have heard a lot in the past few years about “the sandwich generation” where parents are caring for their children and their own parents. Only recently, have I begun hearing about sandwich generation parents where one or more of the children experiences special needs. Maybe I am just paying closer attention to it because that is where we are right now.

When my brother and I talked about my parents needing to be with one of us it was a major consideration for me. There were many things for me to look at in deciding whether we could handle incorporating my parents into our home.

The folks need a single story house which we have but the only bedroom for them was next door to Billy Ray’s room and his noise would keep them awake and stirred up. Additionally, Billy Ray has been in and out of the hospital 5 (or is it 6 – I have lost count) during the past two years. I am not able to leave the hospital when he is there. We have actually rented a motel room a mile from the hospital a couple of times and I have not even been able to get there except maybe long enough to shower. During those times, it would be impossible to care for my folks.

I also had to look at how well my mother and I would get along. I am not going to go into it fully herein but suffice it to say my relationship with Mom has been a challenge my whole life. We are very different people. I am more like my maternal grandma (a people person and a messie) and my mom is a cleanie. Mom is not the animal person that I am. I feared she wouldn’t accept Billy Ray’s service dog (although she has accepted my brother’s dog well).

My brother and I decided that he would bring my parents to his house. One of those chair elevators was put in his stairwell but Dad’s health deteriorated quickly and now he is in a hospital bed in my brother and sister-in-law’s living room until arrangements can be made for a nursing home for him.

We visited my brother’s home in a neighboring state last month. I see how it has taken over the lives of my brother and sister-in-law. I see how exhausted my brother seems. I feel badly that I can’t help more than we are able to do.

As you can see by Billy Ray gently leaning over to hug Papa with Grandma’s assistance in the picture above, he handled the visit as well or better than we could expect. However, when we tried to stay with the folks for a few hours so my brother and his wife could get it, the conflict between the care of my son and my parents became clear. Mom and I did work together on feeding Dad and Billy Ray but it was a struggle that probably would have worsened with time. It was difficult to watch Billy Ray and attend to Dad. I feared he would somehow ruin my sister-in-law’s beautiful décor or be too rough with their little dog (as you can see in this picture with my sister-in-law and "Coda" he loved him but Coda is not as sturdy as the service dog at home).

Billy Ray requires one on one care at home. We have to constant monitor. It didn’t take long to see that it wouldn’t have worked here on a day to day basis.

I finally came to realize that being stuck in the guilt I was experiencing was impacting our lives including Billy Ray’s. Sometimes you just have to get back into the idea of the Serenity Prayer again. Change the things you can and accept what you can’t change. There are just some things we can’t do but it is hard to accept that in times like these.

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

Our Adoption Anniversary

Today is the 23rd anniversary of becoming a family. I read that you should tell the story of a child's adoption just as any other bedtime story and frequently told him the story rocking him to sleep at night. Eventually I just started telling him the every year on his adoption day. When I started doing visuals I created one for his story. It's on my website here.

Another suggestion from my reading about adoption was to have an adoption birthday just as any other birthday. We have always done that but now we call it our adoption anniversary because it gets confusing as a birthday and because it was really a special day for me too. Throughout the day each year I tell him what I was doing or we were doing at various times of the day. For example, Raymond (my late husband) couldn't get the day off to pick him up so my mother went with me to the adoption agency. We call my mom every year at approximately the time (10:30 a.m.) that we picked him up. That way we sort of share the anniversary with her. They both love it.

Today my thoughts seem to be running to how far we have come and how many expected turns we have taken. Also how much different I am because I have had the joy of being Billy Ray's Mom. Hopefully we have made a difference in his life too.

Earl, my stepson, told me at the time of Raymond's death that Billy Ray was the best thing had ever happened to his Dad. It did change him a lot.

When Billy Ray was little saying "Earl" would come out "girl" so Earl taught him to call him "Bubba" for brother. When we went to California to meet Larry's family, Billy Ray immediately started calling Michael "Bubba". It was like he just recognized him as a brother from the start. Michael is Billy Ray's champion. He talks about him everyday many times a day. The above picture was taken with Michael and his wife, Rebecca, at Thanksgiving.

There is so much more that I could say about our life together but Billy Ray is ready to have his story read to him and we have an adoption anniversary to celebrate today.

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 (under construction)
Club Mom Articles
Parenting Your Complex Child Yahoo Group

Comment Moderation and Word Verification

When I first started this blog somehow spammers were able to get a ping or notice of some kind whenever I posted. Almost immediately I would get comments that appeared computer posted on everything from male enhancement to general spam products. I finally activated word verification because it was supposed to stop the computer generated spam comments. A live person would have to type in the word to post a comment.

That worked for the most part for quite a while. In the past few months it is not stopping almost daily inappropriate comments. For example, someone (appears to be the same person but with multiple addresses) has been leaving a comment on my October 2005 post on behavior medication. This comment was trying to sell pain and other meds of the type you would need a prescription for. I have deleted it over and over again.

Tonight the computer is beeping me with new mail for a comment on several posts. I logged into Blogger and had just deleted one when my email software beeped me for the same comment on a different post.

I am not a big fan of comment verification mostly because I am afraid I won't get to them quick enough to approve them. However, it is time to take that step. I hope my readers will bear with me.

Until next time,
Peggy Lou Morgan

Awareness That Brings Acceptance of the Individual

As we near Autism Awareness in April, I have been thinking about the conflict I wrote about in Acceptance – Not a One-Sided Issue on my Amazon Blog last year. The comments made by Cal Montgomery in her review of Autism is a World and partially quoted in the referenced post have continued to haunt me. I was bothered by the following comments made by Ms. Montgomery:

“Once they're aware of the sorts of people we are they have basically two options: they can react to us in some special way (special ed, special workshops, special segregation, etc.) that takes our fundamental difference from them into account, or they can lose interest altogether and wander off to do other things. ***”

“I tend not to cooperate in awareness efforts. I am tired of being what Jim Sinclair calls “ a self-narrating zoo exhibit”, tired of being told by the neurotypical parents and teachers and professionals who deal with autistic people that my only value is as a sort of reference work they can use to help ensure that a couple of generations from now there is nobody like me on the planet.”

I thought about it again after watching CNN’s interview with Amanda Baggs and reading Dr. Gupta’s blog about the interview.

The problem with awareness may be that it is too much geared to stereotypes and the idea of a cure and not enough on an individual. Society tends to forget that Autism is a spectrum and not every person will experience it the same way. As Bonnie Sayers points out there is a variety of things to be learn about. Not every person experiences the same things.

Billy Ray is Billy Ray. He is not Amanda Baggs or Sue Rubin. He is not just an Autistic adult or an adult who experiences Down syndrome or bipolar. He is unique. He can’t be pushed into systems for the group, he needs systems that work for him individually. When that is done, he is able to enjoy his world and has much to contribute to it. It is probably the same with your child.

It was devastating for me to realize that Billy Ray didn’t really benefit from programs that others swear by. For example, a program that is often used by therapists and frequently praised by fellow bloggers was tried for long periods with Billy Ray on three separate occasions. That doesn’t make it a bad program. It has clearly helped thousands of children and parents.

I told a new therapist that we had tried that program twice and it didn’t work. He actually yelled “what do you want from me”. What I wanted was time to be taken to get to know Billy Ray and find what worked for him. I finally started documenting and trying to know my own son better, adapting his world to what worked for him as an individual and to communicate him as he is to others.

If awareness is to make a real difference it must see the individual not just the group. We are asked to allow for diversify in many types of peoples in our society. It is time to recognize diversity and VALUE in children and adults who experience special needs too. We need to advocate for flexibility in community and in services so that everyone can benefit.

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

Reasons for Actions

Billy Ray has been busy lately. As I wrote here he is changing. I am not sure whether it is his improved medical health or maybe the exit from puberty but in some ways we have the Billy Ray we knew before his seizures at 14 years old.

As stated before my son is my best teacher. As I have been working with him more because of his recovery and our lack of support staff, I see even more clearly how focused he is and that almost everything he does has a purpose.

Presently, he has lots of energy and a desire to be busy. He loves to do housekeeping things, probably from doing things together since he was a toddler. His intolerance of clutter these days is actually increasing since I wrote Temperamental Mismatch. Sometimes he can’t even stand to have things in drawers in dressers or the coffee table (except his own I might add). He seems to be taking over the house when we allow it.

We have created a to do list for us to work on together but it includes movie breaks for him. We put a small tv-vcr-dvd combo in my office so that I can work while he is taking a movie break. I have been working on a long overdue project. He can’t stand for me to leave it laying on my work table when we go back to working on projects together. At first, I thought it was the clutter then I realized he had a method to his madness. My worktable is a computer table that also holds the printer-fax and a monitor hooked to his old computer (which I am transferring files from). The screensaver for his old computer is his picture file. The monitor that is hooked up to it is one of those high resolution flat screen ones my husband recently inherited from his stepfather. The other day after he was agitated until I put my project away from that worktable, I looked over and saw that he was pulling the chair up to it and intently watching the pictures on the screensaver. That project would have been in his way because he had elbows on the table.

Another example of his focus or communication was his intolerance of towels placed in the dresser in the guestroom. We don’t have a linen closet in this house and very little drawer space in the bathroom. I was putting towels for the bathroom in the guestroom dresser. That dresser was one I purchased for Billy Ray several years ago because it was supposed to have drawers that he couldn’t pull out. It didn’t work well for him and he had taken to knocking furniture over at that point. I was afraid he would get hurt so we removed it to the guestroom and found some plastic bins two to a rack and bought three racks as a substitute dresser. They adapted well to him for quite a while. However, after multiple rewashing of the towels he pulled out of the now guestroom dresser and either threw on the floor or put in the hamper, we realized he wants that dresser in his bedroom again. Sometimes I think I am the slow learner. He clearly focused on the goal.

Obviously we can’t allow him to take over the house which he clearly would do. We have to set limits such as what’s in the master bedroom belongs to Mom and Dad and he may not go in there or remove anything without our permission. He is a visitor in my office and may not rearrange my papers. However, I have noticed that when my desk top gets more piles all of a sudden my garbage gets fuller. I am inspecting the garbage before it goes out and working on reducing my desktop piles. The irony of it is he’s right. He and I are both less stressed when my desk is clear. Again, he is my teacher.

Apparently Billy Ray is not the only one who has a reason for what he does. I loved the interview on CNN’s Anderson Cooper 360 with Amanda Baggs who experiences Autism. She had reasons for many of the things she does. Dr. Sanjay Gupta wrote of her in his blog:

“She taught me a lot over the day that I spent with her. She told me that looking into someone's eyes felt threatening, which is why she looked at me through the corner of her eye. Amanda also told me that, like many people with autism, she wanted to interact with the entire world around her. While she could read Homer, she also wanted to rub the papers across her face and smell the ink. If she saw a flag blowing in the wind, she might start to wave her hand like a flag. She rides in a wheelchair, she says, because balancing herself while walking takes up too much energy for her to also type and communicate. To an outside observer, the behaviors would seem eccentric, even bizarre. Because Amanda was able to explain them, they all of a sudden made sense. In case you were curious, there is no possible way that I was being fooled. Amanda, herself, was communicating with me through this voice-synthesis technology.”

The key to adapting seems to be finding the reason for the action. It is hard work sometimes to find it but it makes all the difference for all of us in the family environment.

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

Intolerance Abounds

The television was on this morning as I walked by to get Billy Ray’s pills. Diane Sawyer, Good Morning America was talking about a story they had done yesterday and the poll they took from viewers.

Apparently, a three year old started crying boarding an airplane. Neither of her parents were able to get her to stop. You can read the article here. Nothing was said about the little girl doing anything but crying or having special needs of any kind. The parents were instructed to make her stop and were eventually kicked off the plane because they couldn’t.

What is more shocking to me than the airlines behavior (deplorable as I find it) was the poll taken by GMA. Of 26,586 votes approximately 62% said they agreed that the family should be kicked off the plane if they couldn’t make the child quit. With this kind of intolerance is it is any wonder people with disabilities have to fight such discrimination and intolerance. What have we become as a community?

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

Maybe a Better Question re the Pillow Angel

Friday night’s Larry King Live discussion centered around a family who had surgical and hormonal treatment for their daughter, Ashley, now 9 years old, to basically keep her as a child. She has been referred to as the “pillow angel”. Basically, if I understand it, she was given hormones to stunt her growth. Her parents will be able to lift her longer because of this procedure. Additionally she was given a hysterectomy so that she will not experience bleeding or painful cramps from menses and had her breasts removed so that they will not grow normally. Apparently, the parents believed that she would be more comfortable without experiencing menstruation and developing breasts.

A search on Google displayed over a million sites that comment on this controversy. Here are two for Times articles: Part 1 and Part 2.

I have read many of them and also had a discussion on our Yahoo group. The more I thought about it, the more I thought maybe instead of taking sides on the controversy we should be asking the question about why parents have to make such difficult decisions.

I do want to be clear that I am not advocating for this radical treatment or necessarily agreeing with it. Joni Eareckson Tada made the comment on the King show that it was alarming that this kind of treatment could set precedents. That alarms me greatly. Our history demonstrates that treatment can be universal. In the past all people with special needs be sterilized to reduce the incidence of mental retardation. Also many people were locked up in large institutions that could have functioned successfully in the community.

We have to ask ourselves if there was adequate resources and support for parents of complex children and adults would the parents have felt they needed this treatment to assure they could keep Ashley in their care for as long as possible.

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

January IEP's Are Here Again

January-February IEP meetings can be among the hardest for teachers and parents alike. While some IEP meetings are regularly scheduled for January or February, many occur because the program is not working and a parent has requested a special meeting.

Chances are you have experienced what I call the “dumb parent treatment” in dealing with some professional relative to your child. Here’s my description of it:

“The “dumb-parent treatment” is an unspoken attitude that seems to imply parents do not understand their children or that parents’ opinions are unimportant. If the parent sees the child as functioning at a higher level than the school or the physician does, then the parent is not viewing the child objectively. It can be conveyed subtly or not so subtly, but the attitude says you are only a dumb parent who does not know anything. How dare you question the opinions of professionals? It is something most parents will deal with at some point in their children’s lives. It is not necessarily about the parent’s intelligence or sophistication. I have spoken with professionals in various fields who were treated similarly when they attended meetings regarding their own children. Excerpt used by permission of the publisher from "Parenting Your Complex Child" by Peggy Lou Morgan © 2006 Peggy Lou Morgan, published by AMACOM, division of American Management Association, New York, New York. http://www.amacombooks.org/”

The stress of these meetings are has been memorialized on a coffee mug which reads "I survived an IEP". I love it.

I have put a new article on my website called Team Building Advocacy which you might find helpful in preparing for your next IEP.

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

Humor is Good Medicine

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

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

Billy Ray's Birthday Party

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

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

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

Below he is making the ice cream punch.

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

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

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

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

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

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

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

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

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

Feelings of Isolation - Adapting Family Events

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

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

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

Merry Christmas to all.

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

Articles on My Website

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

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

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

Parenting a Complex Child Continues into Adulthood

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Adjusting to Seasonal Time Changes

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

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

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

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

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

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

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