With All This Technology - Why Can't We End Waiting

As I was sitting her working on two posts that I plan to post later this week I can hear Billy Ray going to the dryer with his support staff and the agitation because the clothes are not dry immediately.

It occurs to me that what we need in this world is immediate dryers.  Parents have the same issues in some ways.  Waiting to find out results from lab tests or to get the dreaded diagnosis is harder than bad news.

Last night my pastor, my husband and our friend, Dave were working on software which will enable us to share video of my presentations and basically talk to you from my website.  Pastor did a sample file using video of the little girl who forgot the words from the National Anthem at the Portland Trailblazers game (you probably saw it all over the news a while ago).  Here’s the file so you can see how the little video boxes will eventually be on our parenting site http://users.gobigwest.com/prcco/richlite/UPLOAD3/player.html and share our excitement at learning all this technology.  Let me know how it comes across for you (is it clear).

As we look at this technology and I listen to Billy Ray’s difficulty with wait I am thinking.  I wonder if we will have quick drying fabric and immediate dryers in my lifetime.  Zap your clothes are dry.

Until tomorrow,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com

Monday Morning 1/30/06

I am in the midst of a project (cleaning my office – yuk) this morning but want to take time to update you on a couple of things.

First, Billy Ray’s transition to larger clothes is going fairly well. Yes there have been a couple of meltdowns but the house is still standing. Certainly it could have been much more difficult to get his ill-fitting things away from him. It is very satisfying to see that it works when efforts are made to do something in the way he needs to experience it.

The camera chip apparently needs to be replaced. We will go into Bend tomorrow to get a new one and hopefully post some pictures of Billy Ray in his new clothes later in the week. I also want to take a picture of Billy Ray and Brice Stanley, his medical provider, when we see him on Wednesday. I got a beautiful email from Brice about how much he enjoys Billy Ray and I hope to do a blog post with part of it and the picture Thursday or Friday.

Last week I was talking with my editor, Ellen Kadin, at AMACOM Books and sharing that my pastor, Richard Lighthill, had come up with some wonderful software to enable me to be more supportive of parents I can’t get to personally. I embarrassed myself by saying my pastor is a nerd. Then I corrected myself by saying a nerd like Bill Gates is a nerd. He is such a computer whiz and understands so much more than I do about computers.

I am so excited with the software Pastor Richard found. It will enable us to videotape presentations I make, record things we do with Billy Ray or even just sit at my desk and chat with website visitors. Recordings will be put on my parenting website for viewing and comments can be made here on the blog. I will keep you apprised of our progress in getting it ready to go. In the meantime, if you have suggestions or questions you would like me to address please email me.

Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

Billy Ray's Closet Cleaning and Shopping Trip

Billy Ray’s planned closet cleaning and shopping trip went very well. I am so grateful to Keddie Wanless and the folks at Corral West Ranchwear for making it successful.

As I have been sharing Billy Ray has gained so much weight because of thyroid issues, his recent diabetes diagnosis and a new medication for his bipolar. His clothes are like a security blanket – very hard to get away from him even if they don’t fit. There is no way to reason with him that they will no longer fasten.

I thought and practiced the lighthouse concept for several days about how to get the ill fitting things away from him without aggressive behavior. I thought about the way kids will do things for others when they won’t do it for their parents. I asked our consultant friend, Keddie to help.

We also know that if we take Billy Ray into a store with lots of attractive nuisances (meaning things that won’t fit or cost too much) or is unlikely to have what he wants we are asking for a meltdown or aggression in the store. Thus, my husband, Larry and I did a pre-shopping trip on Wednesday. We went to one Western store and discovered that they didn’t much selection of the part leather vests (like John Wayne in the movies) but they did have a lot of them that were fancy and far over our budget. Then we went to Corral West Ranchwear and found that they had much more of the type of things Billy Ray would be looking for.

During our pre-shopping Larry and I went to a leather outlet store in Sisters, Oregon which has all kinds of stuff for $20.00 or less. We bought a leather vest for $10.00 which he likes and a “cowboy hat” for $20.00 so we saved at least $70.00 by doing that and it also helped transition into today.

We can’t cram too much into his time between dinner and bedtime or he is up all night. Larry and I planned out dinner in advance and he put it together last night while Keddie and I went over everything in his closet with Billy Ray. I stepped back as much as I could and let Keddie work with him knowing that he might co-operate best with her. He agreed to removal of many ill-fitting or worn out items from his closet and they were carried out in boxes to be out of sight.

This morning he got up in a good mood, was delightful at breakfast enroute as we had promised him. It was wonderful.

At Corral West two sales people who were more than wonderful met us. Billy Ray really related to a young man in western attire who helped us a lot. We complicated their life a bit because we came after they have done inventory and they had to note everything but they took in stride.

The camera memory chip gave us the error message “card unreadable” so the pictures were all lost no matter what we do. I got several shots of Billy Ray looking the mirror while touching various items of clothing he was trying on. I so wanted to share that with you but it isn’t going to happen.

There have been two incidents of looking for things that were removed last night. In one instance we had a meltdown but I was able to redirect the situation after awhile. In another one, I told him what he was looking for had been taken to storage because it didn’t fit anymore why didn’t he look through his new things. He did and all was well.

What could have been a disasterous day worked because we throught, prayed and tried to understand what he needed to get the job done. Perfection NOT!! However, it was much smoother than it could have been.

Until Monday,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

A Timesaving Tool

In Parenting Your Complex Child I shared that I use "flags" and color coding to make preparing the documentation for professionals simpler and quicker. After the manuscript was submitted I walked into Staples and found the new flag pens. No I don't have any financial interest in 3M who makes the flag pen or Staples. However, I did want to share it with you as you set out to start your journal because it is such a time saver for me.

As you journal or when you review it have a color code for each item you are tracking. For example, yellow for medical issues. Highlight the note and put a little yellow flag on the side of the page. The flags on the side of the pen can be changed so that the color of the pen and the flag are the same. The flags are refillable.

Just a housekeeping note, tomorrow I will take Billy Ray shopping for bigger clothes because of his weight gain. I am going to wait to do the blog in case I can get some pictures to share with you.

Until tomorrow,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com

The Job of Parenting a Complex Special Needs Child

The other day bank teller apologized because another teller needing help interrupted her. I told her I was the mother of a complex special needs child so I understood multi-tasking. Funny how little tidbits of conversation stay on your mind for days. For days since then I have been thinking about the multi-tasking we do as parents of complex children.

This morning as I was walking through the living room there was a television interview on with a doctor about a book he wrote on marriage. In all fairness I have to say I am pulling this totally out of context because I heard very little of the interview. He was saying that you have to treat it like your job and apply the same level of effort to making marriage work.

It is the same way for parents of complex special needs children. We can’t relax and enjoy our children as much as we would like. We have to develop understanding of the education process, a variety of medical conditions, medication side effects and governmental programs. Then we have to figure how to present our child’s needs just as someone giving a presentation.

We become the lobbyist (advocate), the secretary, interpreter and caregiver not to mention breadwinner, chief cook, and bottle washer.

Applying business principles to our multi faceted job of raising our children does help get respect and results for our complex children. I will talk more about this in coming blog posts and in Parenting Your Complex Child.

Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

We Have a Few Answers to Billy Ray's Communication by Behavior

Searching for answers to Billy Ray’s communication by behavior is a challenge to say the least but it feels good when we find some answers. We thought there were three potential causes of his behavior on the weekend: 1) acid from too much orange juice, 2) dental pain or 3) his hesitancy to give him clothes that are too tight now that he has gained weight. We have ruled out at least one of those now.

Yesterday we went to see Dr. Hester for an emergency dental appointment. Billy Ray was to have some work done this summer just before his emergency surgeries (appendice and internal bleeding). That had been delayed until he had stabilized. It seemed possible it was now causing his pain. Dr. Hester is so good with Billy Ray and very thorough. He tested each spot to see if it could be causing the pain. He said there is one capped baby tooth (done years ago to keep some of his baby teeth because Billy Ray didn’t get all his adult teeth) that could be causing him pain only if he bit down on it wrong but probably not the source of much pain. We will go back for a long appointment to take care of all the problems at once but Dr. Hester didn’t believe Billy Ray would have tooth aches in the meantime.

When we got home I had an email from Brice Stanley, Billy Ray’s PA, that the lab results show Billy Ray has hypothyroid. Brice said that it could be causing the constipation, his aches, fatigue and “almost assuredly his weight gain”. That may be a big part of his communication by behavior.

Additionally getting Billy Ray’s Depakote level (medication used as a mood stabilizer for Bipolar) stable has been a major difficulty lately. Billy Ray’s chemistry is definitely unique. We know from observing him at various blood levels that he does best when the Depakote level is 105-106 and when it goes over 110 he is more manic, agitated and less focused. We tested it two weeks ago and it was above the desired level even though we had decreased the medication. We decreased it and tested again on Monday. According to Brice’s email it is up 11 points more. Clearly that level is having an impact on his behavior. Brice suggests the hypothyroid might be affecting this problem. Hopefully as we address the thyroid issue we will be able to stabilize the Depakote level.

As we have talked with Billy Ray about the need to get rid of clothes that are too tight and planned a “date” with Mom and our consultant friend, Keddie to go shopping Saturday, Billy Ray seems to be accepting that. Yesterday he willingly wore some bigger things we got out of storage from when he had gained weight on a former medication. The excitement of planning for a few new things has changed his attitude about the outgrown clothes.

Before I close I wanted to share our evening with you. After my husband and I took Billy Ray to the dentist we went out for dinner just the three of us. We hadn’t done much of that lately because of his diabetes. However, his blood sugars have been good and Brice told me it was okay for Billy Ray to have a treat once in a while now that we have his diabetes pretty stable. Billy Ray was so good and it was a delight to watch him enjoy it so much. His stepfather said that on the way out of the restaurant the guy at the door said goodnight and Billy Ray turned around and gave him high five. What an improvement.

Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

Being the Eyes and Ears for Your Complex Special Needs Child

A comment that always upsets me was made again last week. You know the comment because the professionals probably say it to you – your child “is lucky to have you because not all parents are as committed to them as you are.” It always angers me because I see most parents working hard for find answers for their kids.

This time I mentioned the comment to my son’s case manager. I asked him if he didn’t agree with me that most parents really try hard to meet their child’s needs even the most complicated ones. He said “not everyone is able to be the eyes and ears.” While I think most parents are able to observe their kiddos better than anyone, it was like one of those lights going off moments.

I thought about the documentation system and approaches in Parenting Your Complex Child (April 2006). That is exactly what it does – acts as the eyes and ears to help interpret our children.

It didn’t start out to be a book. I just grew frustrated with not being able to get adequate help for Billy Ray or even fully understanding him myself. Nothing was working. I felt like medications were being thrown at Billy Ray without the doctors really understanding him. He was being forced into programs that didn’t work for him instead of creating systems that did work for him.

The first turning point was in practicing the lighthouse concept that I have shared with you before. The next was taking past experience as a paralegal and a professional fiduciary, applying them to create a documentation system so that doctors, educators, and social work would see Billy Ray as he really is.

Documentation seems overwhelming when we living out the stress of taking care of our children. I hope that I have made my system simple enough that parents can use
it to be the eyes and ears to get the information to professionals of all kinds about what their child needs to thrive.


Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

Billy Ray's Law - Never Brag About How Good It Is Going

I forgot that another paragraph in Billy Ray’s Law is that when things are better I shouldn’t brag about it because the next hour it may all change.

Saturday morning was delightful. The blog post reflected the joy of that. We got a lot of things done in the morning and early afternoon – working together as we have often done.

Within a few hours we had more communication by behavior (agitation and aggression towards me). There are three potential causes. He had demanded more orange juice than we like him to drink which could have effected the gastritis/reflux problems. Possible dental pain because he was scheduled to have dental work before his health crisis this summer and ended up in the hospital. Both the dentist and medical provider wanted him to wait until he was more stable physically to have it done. It could be the clothing problems we wrote about earlier.

When we aren’t sure we do what we can to deal with all of them and continue observing. We cut his orange juice consumption on Sunday. We talked to him about the planned shopping trip for bigger clothes and that we would need to go through his closet and remove all the smaller clothes. We weren’t sure how he would tolerate that because he is so attached to his clothes. I did a lot of praying about it before I talked to him. He is very excited. Additionally, he has an emergency dental appointment tomorrow at 4 p.m.

It’s back to the idea of the serenity prayer and the lighthouse concept – change what we can and asking for guidance.

Next week, hopefully, we will have pictures on the blog of Billy Ray and his bigger clothes.

Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

Our Saturday Morning 1/21/06

Once in a while you have the kind of Saturday you hope for.  Billy Ray slept to 8 a.m. this morning.  Maybe he was tired from the night before.  Whatever the reason I’ll take it.

He came to our room to get us.  Apparently Larry had been up earlier and made coffee.  It was special to be able to drink a little coffee while Billy Ray was focused enough to feed his dogs with his stepfather.  That is a treat I don’t get everyday.

It is very satisfying to see Billy Ray proceed with his schedule that we have worked with him on for weeks.  He marched into the bathroom.  When he was done he washed his hands without cuing.  Then to the breakfast bar to sit down while I gathered the equipment for his blood sugar test.

Blood sugar was great – 106.  When we see our efforts to get his diet in order it is escalation because it can be difficult to keep him on his diet.  I have been making diabetic biscuits and things to replace his favorite foods and he is eating them pretty well.

Presently he is doing his pacing routine with his walkman.  After reading that Sue Rubin paces when she first gets up we just put it into his schedule instead of fighting him to sit down.  It seems to help him to get it out.  Larry is making his breakfast while I check email and greet my fellow bloggers.

The beauty of adapting procedures, schedules and environment to what works for your child is that sometimes you can have a morning like this.  It is nice to say “yes this will work.”

I hope your weekend is going well.

Until Monday,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com

Feeling Misunderstood

I was thinking more about the lack of understanding we experience as parents of complex special needs children, sometimes even from other parents of special needs children because of the uniqueness of each child. I still feel that in some cases it is Unrealistic Expectations to hope for understanding. At the same time, there are times it feels so lonely to feel like no one understands.

Billy Ray had another one of those nights last night. He woke up at 1 a.m. and didn’t get back to sleep until 5:10 a.m. At 4 a.m. in the morning when he was yelling, giggling, and asking the same questions over and over again. At times like that it is hard just to stay awake and you just want to scream “go to sleep” but that would only agitate the situation more.

At this moment, we are experiencing a power struggle with Billy Ray because his “bulldoggey jeans” will no longer fit. Someone said “why don’t you just throw them away”. It is not that simple. We threw some pants in the dumpster once after we had taken him shopping to replace them with two pair. Weeks later he was remembering them and going into a meltdown because we wouldn’t take him to the dumpster to retrieve them.

How do you explain what happens on a day to day basis with incidents such as the two examples. Unfortunately you can’t always. Billy Ray can’t always be logical in his thinking and others can’t understand from their logical way of thinking.

We are back to the serenity prayer in a sense. We can change what we can in terms of finding understanding from those who can’t put themselves into Billy Ray’s illogical way of thinking. At the same time we have to accept that some will never be able to understand.

I know this is a repeat of sorts but it is where I am AGAIN today and I share openly with you.

Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

Lab Technicians and Other Para Professionals Make a Big Difference

This morning I read reports on a couple of different list servs that I belong to about parents having trouble with their children pariticipating in lab tests. I thought of how fortunate we are to have had Jeff to get us started on the right attitude about lab work because it has been so necessary for Billy Ray.

When Billy Ray came to us at 15 months old he had chronic ear infections and malnutrition. It took his developmental pediatirican a long time to get the infections stable enough to have tubes put in his ears. Then he grew and developed so fast they kept falling out. Each time he had to have surgery he had to have blood work.

Jeff was one of the lab techs at Kaiser Permanente. He was always so gentle and made it fun for Billy Ray even when he still sat on my lap with a bottle in his mouth.

Later Billy Ray had to have medication that was blood level for his bipolar so we had to do frequent blood tests. We worked them around Jeff's days off because it made such a difference in how it went for us.

We are in a different area now. However, the lab technician at LaPine Clinic, Dan (BR pronounces it "Damn" but Dan is a good sport about it) and Billy Ray have become buds like Jeff and BR were. It helps so much when he is comfortable. He is the only kid I know who wants to go to the lab.

Until tomorrow,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com

Not Well But Sure Are Better

I have been doing the summary document (with data from the daily journal) that I do when we are going to see Billy Ray's psychiatrist. The document is prepared to inform the doctor of changes and/or progress. It seems that it is just as beneficial for me to prepare it because of the encouragement it brings to see that things are improving.

Wanted to drop you a quick note early this morning since we have a busy day of appointments and I won't get to do a full scale blog. The picture is just one I like of Penny Lane listening intently to her "boy".

Yesterday Billy Ray saw Brice Stanley, his PA-C for a medical appointment. Brice told me that Dan, the lab technician showed him a picture and said he would buy lunch if Brice knew who it was. The picture was printed from the recent post Billy Ray and his clothes obsession. It was the one of Billy Ray sitting on the front step in a little suit when he was three years old (twenty years ago). Brice recognized him. I loved that story.

Until tomorrow,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com

If Mom Says No Ask Dad or Support Staff

You know the old adage “if Mom says no ask Dad”. Billy Ray uses the same adage on support staff. If Mom says no ask staff.

In Billy Ray and His Clothes Obsession I shared how difficult it is to get Billy Ray to switch from ill fitting clothes to new ones. He wants the new ones at the store and wants them in his closet but is unwilling to trade them for ones that are worn out or don’t fit anymore. This weekend when I was with Billy Ray, he wanted the “bulldoggey” jeans, which have popped two buttons off the waist (there is no point to sew another one on since they no longer meet) and the zipper, will not close all the way. They are plain too small for him.

This weekend I took a few punches from Billy Ray over his frustration and confusion that the jeans no longer fits and finally was able to help him see that he needed the bigger jeans because he is a big man now. You can imagine my reaction yesterday when Billy Ray came out of his room stuffed into his “bulldoggey” jeans. Staff said “that’s what he wanted”. That means we will have to deal with it all over again.

I told staff yesterday morning when he came in that I had worked through the jean situation with BR and it was written in the journal from the weekend. Apparently I needed to say don’t let Billy Ray put those jeans on.

It is very important to assure that all parties working with your complex child stay consistent with whatever you are trying to accomplish. Discuss your plans or methods with everyone involved with your child and assure consistency will be there.

Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

Unexpected Relationships for Your Child

When we were looking for a new church following moving, we visited several churches. It seemed they either didn't have the music which Billy Ray needs to calm him enough for him to stay reasonably quiet during the rest of the service or they were not able to accept his occasional speaking out.

Finally, I started calling pastors and inquiring before we visited because the process was difficult for Billy Ray and his Mom. When I called Pastor Ray Jones, then pastor at Soul's Harbor Church of the Nazarene, to inquire how receptive his congregation would be to Billy Ray he asked if I had considered attending without Billy Ray. I said an emphatic "no". In all fairness to Pastor Ray I have to tell you that this church was his first pastorate and he was new out of Bible College.

We visited Soul's Harbor. Billy Ray was always treated okay but it took a while for him to be totally accepted. The thing that seemed to bloom immediately was his relationship with Pastor Ray and his wife Christine. It seemed Pastor Ray was working Billy Ray into his sermons on a regular basis. One time he said "we want more of the Billy Ray's in our church." Another time he was preaching on relationships and he eluded to his relationship with Billy Ray as something very special and it truly was.

The relationship with Christine was very special to Billy Ray. I remember the first time he tried to take her hand unexpectedly she sort of cringed. I was not shocked by that because putting myself in her position I could see that it was a bit strattled for basically a strange man to run up grabbing at her. His love for Christine was so clear to her and others. She called him her biggest fan because he would become agitated when we had special music preferring Christine to sing. He had to know she was at least there even if someone else was singing.

During the six years we are at that church Billy Ray was quite ill. He was too sick to be in church. I told Pastor that Billy Ray was saying "I want Christy-deen to sing to me". They had a CD that Christene had made several years before and Pastor made a copy for Billy Ray. He loved it so much it wore out and Pastor had to make him a new copy.

You can see the awe in his eye contact (which he doesn't often have for others) in the above picture taken at that church the last Sunday before we moved to LaPine. Billy Ray loved to give Christine flowers on her birthday or following a muscial presentation. Here is he is giving her one last bouquet.

It is amazing the beauty that can occur when you put forth the effort to help your complex child establish relationships. Sometimes it can feel awkward but it is well worth it.

Until tomorrow,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com

Billy Ray's Law

We all know about Murphy’s law. In our house we live by Billy Ray’s law which does have some points that are similar to Murphy’s law.

• The earliest day of the week that Billy Ray gets up is the only day of the week that Mom can sleep in and he will be raring to go.


• If he keeps Mom up most of the night he is most likely to take a nap when Mom can’t take one.


• He is quiet until the phone rings.


• He is the most noisy during the most important telephone calls.


• Clothes never wear out no matter how many times he walks on the too long legs (because he won’t let Mom cut off and hem).


• No matter how much weight he gains his clothes will always fit.


• Everyone is put on this earth to meet his needs and no one has needs of their own.


• Support staff don’t need a day.


• The world waits for him. Stores never close.


• Stores will always have the same style he wants in his size everytime he goes into the store and wants them.


• We will never run out of his favorite foods no matter how much he eats.

This seemed like a good idea to laugh a bit with you and I had lots more to write until, of course, I was finally able to sit down at the computer (we don’t have a Saturday support staff right now). You get the idea. Probably there is law according to your child too. Share them with all of us even if it is only for comic relief.

Off today's topic but I just have to share my excitement with you. Remember how excited I was because we discovered Walmart has Parenting Your Complex Child available for reorder. This week my husband discovered that Powell’s Books in Portland, Oregon (my hometown) has it for preorder. I have spent hours in that bookstore. To know that they are carrying it is like going home.

Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

Reflections of An Adoptive Mom

The idea that adoptive parents are somehow better than birth parents because they voluntarily take on the responsibility bothers me. Biological parents of a special needs child have the choice to place their child with the state or give them up for adoption. They are not forced to stay committed to a child who will require more than they are willing to give. Commitment is a choice is either situation.

Sometimes people say “you are a saint” because of adopting Billy Ray. The truth is he was my answer to prayer and my dream come true. Growing up I dreamed of having as many children as my grandparents (13). Infertility was devastating. I longed for a baby to hold and love. At the same time, I recognized in myself that I was more patient with special needs children than my two stepchildren – both teenagers. I adored the personality of many Down Syndrome people I had worked with. It was perhaps a selfish choice.

As the saying goes “be careful what you pray for.” It has been a different road than I would have expected just as if a biological child had been born with special needs. The cute and cuddly experience was short lived. There was no way to anticipate ADHD, bipolar and Autism would become part of our life.

The idea that adoptive parents give up their children more than biological parents is unfair. It is about commitment not blood. If the bond to your child is there you do what you have to do however the child became your child. It was never a consideration for us.

Reading Lora’s blog on emotions I was reminded that when Billy Ray was little the bond became very strong. If I was having a bad day at work invariably the phone would ring from Headstart that Billy Ray wanted to talk to me. He just seemed to know and it could always perk me up. If he was having problems at preschool I just knew and called to check on him. The bond that occurred in those early years is what has carried us through his difficult times.

A different life than expected yes but I wouldn’t have missed it. Sometimes I look at him and say “I’m glad you’re my son”. The struggles we have faced haven’t changed that.

Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

Billy Ray and His Clothes Obsession

I have to admit it - I created a clothes monster. Billy Ray loves clothes.

At the time of the adoption I was working in a large office. Several of the attorneys gave us cash instead of coming to the office shower. There were two other baby showers besides the one at the office. I used the cash to buy all kinds of little outfits. There were baseball jerseys with jackets that said "little sluggers", sweats and little suits for Sunday.

Pictured to the right is one of his little suits that he loved. This is scanned from an old Polaroid picture but hopefully you can see the expression. It is one of my favorite pictures. He was about two and a half or three years old.

In the first few years he was not too impressed by clothes. He had little suits that he wore to church on Sundays and would dress appropriately for school and play. However, when met my attorney and friend, Doug Harrison he wanted to be exactly like him. Doug wore suits everyday to work so Billy Ray wanted to wear suits.

His obsession with clothes has continued to be linked to people he admires. I have mentioned before that he names his western slacks and white "cowboy" shirts "Koger" slacks and shirts. Here he is with Mr. Koger, his principal at Silverton High School. He is proudly showing Mr. Koger his high school ring.

When he met our former pastor in Woodburn, "Pastor Ray" he wanted to be like him. So he wants suit jackets which he calls "Pastor Ray coat" and he wears it with "Koger slacks". Here is a picture taken with Pastor Ray, his wife Christine and "my choir" on our last Sunday at Soul's Harbor in Woodburn. Note he can't take his eyes off Pastor Ray even to get his picture taken.



He also loves his "cowboy" outfits since we moved to a rural area where that was pretty common attire.

He prefers one type of clothes for a while and then switches to what he wants. New clothes are fun but often are only worn once and put in the closet. He is difficult to fit especially with his desire for things that may be out of style or discontinued. An example of this is jeans that had a design of a bulldog embrodered on the pocket. The jean manufacturer quit making that style and nothing else will do. Eventually we found some other jeans with the same blue thread with a different design. He still thinks they are "bulldoggy" jeans but accepts them. They are now worn out and way too tight.


Presently we are in a real dilemna because he gained a lot of weight with his diabetes and nothing really fits. We have several things saved from when he gained weight from a medication he used to take but he is not having them.

He does like flags because of his "Bubba Mike's" recent service in Iraq. He will wear some "Army" looking outfits or things with flags for a day or two but then still wants to go back to his own favorites.

Basically we need to remove all of his old things because they are too small and start again. Figuring out how to get him to accept new things even if we could find exact duplicates is challenge. He does know the difference somehow. Given the difficulty in finding things he likes the problem is multiplied.

Welcome to our world (smile). When we figure this one out I will share our progress.

Until tomorrow,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com








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Supporting Other Special Needs Parents

I have read several blogs lately where one or more parent disagree with the handling of care of someone else’s child or other parents’ beliefs about causes and treatment of Autism. The fact that there is no definite theory for the cause and treatment of Autism has added controversy among parents and professionals alike.

As caring people when we see something that works our own child and someone else is not doing that for their special needs child we want to help them. The problem is that in our enthusiasm we sometimes forget that what works for one child doesn’t work for all children.

When packing to move it was obvious how many books I bought trying to find help for Billy Ray. Many of these books gave specific approaches for every child with a certain diagnosis. Most of those approaches did not work for Billy Ray as specifically suggested. It became frustrating. Eventually we gleaned what we could and adapted our own approaches. Thus I tried very hard in Parenting Your Complex Child (AMACOM Books April 2006) to share what worked for us and to give methods for finding out what works as opposed to telling other what to do for their child.

One commenter on Susan Senator’s recent blog post mentioned that she is uncomfortable being around those who use “the diet” because she doesn’t have her child on the diet. That is a sad but true commentary on how parents are made to feel that we must use everyone’s methods for our unique child. Since reading that I keep thinking of Rodney King’s words “why can’t we all get along”.

True support for each other will recognize that a parent must do what works for their child as an individual.

Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

Update on Billy Ray 1/10/06

Billy Ray is communicating again.  It seemed important to share more of this because of email from some of you asking what I mean by communication by behavior.

He has been experiencing some agitation the past few days that could be from several causes. He is still on antibiotics trying to recover from his ear infection.  That can affect his behavior at times.   In addition, he does not understand why his clothes are not fitting with his weight gain.  Despite the fact that we bought him some large ones for birthday and Christmas and brought some others out of storage, he still wants to wear his favorites, which are too tight.  There is nothing that can bring on agitation faster than confusion over his clothes.

During the past few days I have noticed something different in what he seems to be communicating to me by his behavior.  Here are a couple of examples.  When agitated he might literally throw the breakfast bar stool or coasters or the tv remotes, etc., etc., etc.  Saturday he looked at me as he substantially laid the bar stool down instead of throwing it.  He caught my eye several times in the past few days and looked at something as if to say: “help me not to throw that”.  He kept his gaze at objects until I had time to move them out of his reach.

It appears that Billy Ray is trying to deal with his impulse control issues and asking for our help.  It is a refreshing change from broken things.

The combination of the new medication and the approaches we are adjusting at home seem to be helping.

Until tomorrow,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com

Preparing Myself for Billy Ray's Transition to Adult Living

Health issues including a medication reaction that changed him permanently at 14 and his health crisis this summer have delayed the transition plan for Billy Ray.  We continue to work with him on skills he needs for his transition from our home and to stabilize his health.

With a complex special needs child, even when they become adults, the empty nest is not quite the same as it might be for parents of whose offspring can fly away to total independence.  Parents will usually be involved in some form for support their complex special needs child even when they are no longer in their home.

If our plan goes according to our hopes, we will still need to arrange for and train inhome support staff , assure his medical and psychiatric care is continued, etc., etc., etc.

This weekend I was remembering the nine months Billy Ray spent in a residential treatment program to re-establish his medication regime and how I reacted to his absence.  I did not know what to do with myself.  Whether it was depression or just trying to catch up from years of sleep deprivation and stress, all I wanted to do was sleep for several weeks.

I was thinking about it this weekend.  While I have no immediate plan to transition Billy Ray, I know that it is coming.  It is time to preparing me while we are preparing Billy Ray.  Preparation while he is still at home is not something I can actively work at but my thinking needs to be in that direction to avoid the sudden shock that occurred during his temporary placement.

Until tomorrow,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com

Would Love to Meet You

My publisher has asked me to gather a list of email addresses so that when I am going to be in your area for a book signing I can let you know. I would love to meet some of my blogger friends. If you want to be notified if I'm in your area please email me.

The aside photo was taken by Laura at Linden Photography My editor, at AMACOM and I picked this picture of the proofs (none of which had me smiling very well) but Laura suggested a different one that she had modified. I sent both to the publisher. It will be interesting to see which one they put on the jacket for my book.

Until tomorrow,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com

Helping Our Complex Children to Experience "Normal" Life

Yesterday I was talking with Ron, my son’s support staff, about Billy Ray’s responses to his schedule. I was recalling something that Dan Hobbs says at the beginning of his video Gentle Teaching . Dan says that the first thing he always asks himself is could he live the life his client is expected to live. If he can’t then there needs to be some adjustment.

I think of that often in planning for Billy Ray. There are parts of his schedule that I could easily live with such as the full body massage he gets daily with Baby Oil Gel shown in the picture. See Skin Care on my website for details about why gets this royal treatment. This is something that we must do for him.

It is a question that we are parents need to think about in our expectations of our children. Of course, there are things that must be done for their health and safety. For example, now that he is diabetic we can’t allow him to have everything that he wants. If we would allow it he would have 6 milkshakes in a day. We limit it to two made with skim milk, no sugar ice cream and sugar free strawberry jelly since we can’t find sugar free syrup like the regular syrup we used to use.

To the degree possible we have to allow them to have choices. Some Autistic or complex special needs children can make choices from two or three things. Some cannot. Billy Ray can sometimes and sometimes not. We do free choice visuals or use his picture symbols which aid in his choices but sometimes he is not able to do it that way either.

At the same time there are things about life that we all have to experience. It seems important to allow our kids to experience many of the things that are just part of life as possible. For example, when we eat we have to wash dishes. The floors have to be vacuumed and our bed made. Some special needs kids may not be able to do all of the normal things of life but I think we have to involve them in whatever they are able to do. It is definitely easier to just do dishes than involve Billy Ray in the task but it doesn't allow him to experience normal life if I do. It is just part of life and it helps them to feel better about themselves. In the picture he is unloading the dishwasher with consultant and friend, Keddie Wanless who was assisting with staff training.

Some may not agree but I think we have to allow our children to live with the consequences of their choices when possible. Billy Ray sometimes detours from his plan for the day by wanting something else just as it is time to go out for his community activity. Yesterday he wanted Ron to make him a hamburger. We had to tell him if he made that choice he would not be able to do lunch at a certain restaurant he does every Thursday. Of course, he wanted both.

I was thinking about the difference in the consequences we as parents experience and those we allow our complex children to experience. Yesterday I dropped a coffee cup and broke it. I had to clean it up and feel the disappointment of losing a favorite cup. Billy Ray recently threw his milk and started a chain of events that ended up with lots of broken glass and food all over the floor. We are cautious not to make a big deal of it for Billy Ray because he feels so guilty about his behavior that he can actually escalate more from the guilt. We don’t need to guilt trip him about behaviors that come out of impulse control issues, confusion or frustration. At the same time just as the rest of us experience in our lives there are consequences. We drop something, it breaks, we clean it up. It doesn’t need to be punishment just normal consequences of things that happen or our choices. To the degree possible, we can allow our children to experience natural consequences of life that we all face without harming them. They can grow from the consequences of life just as we parents do.

I agree with Dan that we should consider the lives we expect our children to live in terms. Some disabled children are kept in front of the television all day or expected to work in production lines which would be intolerable for some of us. We need to consider that constantly. At the same time, we need to allow our children to experience life even when it can be the pits for us all.

Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

An Example of Adapting for a Special Needs Child

I have been looking through our picture files which is voluminous because I use it to make visuals. There are pictures of Billy Ray doing all his tasks, etc. I found this one that is an example of adapting to what works for your child.

Billy Ray loves western wear. Since we bought him his first “cowboy belt” with the skinny do-dads he is unwilling to wear anything else.

When he gained a lot of weight due to the medication the belt no longer did its job at holding his pants up well. There were some embarrassing moments. We attempted to transition him to suspenders but he wasn’t having it.

A part of adapting is to assess what will motivate your child to do the desired activity. In the case of the western belts what Billy Ray loves about them is the “shiney” things on them. I called every western wear store I could find to try to find suspenders that might have the same ornaments as the western belts. Nothing could be found.

Our local western store did carry trinkets that are generally put on saddles or vests. At last, we purchased a pair of plain suspenders and some of the trinkets. His first pair of suspenders with “shineys” is pictured here. Eventually we found the little ornaments in letters and were able to make him a pair of suspenders with his name on them which he loved.

It was not a slam dunk to get him to transition even with the ornaments. He had to wear both belt and suspenders for a while.

Another thing that helped was my husband noticed that in wedding pictures his son, Michael, was wearing suspenders. Billy Ray adores “Bubba Mike” so anything Mike does is okay for him to do. I made a visual with this picture of Billy Ray in his shiney suspenders and Mike in his suspenders. I wrote couple of lines about belts not always working so sometimes men need suspenders. I made a heading that Billy Ray and his Bubba wear suspender. Walla!! It worked wonderfully.

Until tomorrow,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com

Dealing with "What If" and "If Only I Had"

I have been thinking a lot about a post called A little scared by Suzanne on the Diverting Daniel blog. Daniel reminds me a bit of Billy Ray in the picture to the right at 4 years old so full of promise and developing so well.

There are so many unknowns about the future for our complex special needs children. Suzanne was worrying about a lot of the what ifs. For example, what if Daniel is stronger than his Mom as he grows up. Those what if concerns are realistic and I do not wish to make light of them.

It is easy to let ourselves get pressured by the sense that we have to do everything right for our child. Suzanne was saying that she felt even more pressure to find the right programs for Daniel. I was thinking about that during my “soaking thoughts” (hot bath brings out all kinds of thoughts – some are actually good ideas). I remember feeling that kind of pressure to do everything right for Billy Ray when he was little.

I have shared bits and pieces of this story in other posts and in more detail in Parenting Your Complex Child but repeat it here to make the point of today’s blog. Billy Ray came to us at 15 months old diagnosed with Down Syndrome, chronic ear infections and malnutrition. He seemed to bloom in health and developmentally.

One of the things we had to consider was whether to have insurance policies to fund an insurance trust for him in the event we were no longer able to take care of him or to spend the money we would be spending on premiums for things like speech therapy not covered by our insurance company. We strapped ourselves to do bi-weekly speech therapy which was expensive at that point. We did that because at 2-1/2 he seemed to be gaining skills so fast. It seemed likely he could achieve at least a semi independent living program in adulthood.

At 14 years old, Billy Ray, experienced seizures believed to be a medication reaction. What was probably already the dual diagnosis of Down Syndrome and mild Autism became much more serious Autism within a couple of months of those seizures. His speech and behavior changed entirely.

This should not be construed to mean don’t plan ahead and do your best to get your child into programs which seem appropriate based on your current knowledge.

I think it gets back to our discussion the other day of the Serenity Prayer. As you go along with raising your child “change the things you can”. Do what is reasonable now to provide opportunities for him. Don’t push yourself too much to give him every opportunity because what seems important today might change as time goes on. A lot of times the “what ifs” will never show up.

You can do plenty without stressing. For example, you can start transitional planning for adulthood pretty young. In Parenting Your Complex Child there are forms to set goals for transition and to ascertain the skills needed for those goals while your child is still in school so those skills can become IEP goals or you can work on them at home. There will always need to be backup planning and changes made with time. However, it gives you the sense of being prepared.

Besides the “what if” fear there may be the “if only I had not that” regret to deal with. I experienced guilt beyond description for agreeing to use the medication believed to have caused Billy Ray’s seizures. His life has been changed dramatically. I had been hesitant about that drug though nothing supported that fear in the literature. I hesitated for a couple of years then went with recommendations and research that implied my “gut” was crazy this time. It was not!!

To be stuck in guilt over poor choices would negatively impact Billy Ray’s future. It was a struggle to accept the things I could not change but necessary in order to move forward and change what I can to make things work for Billy Ray.

Until tomorrow,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com

Trusting Your Gut and Doctor-Parent Relationships

The picture on the right doesn't have anything to do with today's post. It is response to urging from several of your to add more pictures of Billy Ray's day to day activities. This is of him feeding Penny Lane in the mornings. He is messy but she cleans it up.

In today’s post, I want to expand on two previously covered topics because of email and phone calls from parents who are concerned about these issues.

Reading the signs our complex children give is always a challenge. Your instinct and skill at reading those signs is very important. When your “gut” that there is a problem is confirmed, a strange mixture of satisfaction at being right and sadness if it is means your child is ill. The most important thing to remember is to trust your gut even though sometimes it won’t be 100%.

On Saturday morning, Billy Ray had a major choking episode at breakfast. Throughout the day, his appetite increased drastically and as I feared so did his blood sugar. He was sleeping a lot as if he was getting sick but there were no apparent symptoms. Sunday his blood sugar was getting worse and he was not eating as much because all he wanted to do is sleep. Finally, called his medical provider, Brice Stanley, PA-C, on New Years night. I worried he might have aspiration pneumonia from the choking. It was one of those times that I did not know what was wrong but I knew that I knew something was wrong.

“Dr. Brice” (Billy Ray needs to call him doctor to understand his role even though he is a Physician Assistant) saw him this morning before clinic hours because he had a crazy schedule after the holiday. Billy Ray has an ear infection with bulge in his ear.

The relationship between your child’s medical provider and you as parents is very important. I have come to believe that listening skills and attitude are at least as important as education. The only medical provider I have ever fired was because he would neither allow me to verbally explain what was happening with my son nor read the documentation I prepared. He just kept prescribing more and more medications without enough information to make informed recommendations and without explaining side effects to us. That specialist had multiple degrees and certificates around his office.

When you have a provider who will listen to the differences your child experiences with various issues, you can accomplish so much better care and understanding. For example, the first question you are often asked when looking for infection of some type is does your child have a fever. Billy Ray has only experienced fevers following surgeries for internal bleeding and a leaking appendice. He has had infections doctors referred to as “raging” without any temperature. Some things the doctors just have to trust the parents about. Thus, the relationship must be strong.

I feel very fortunate that we have Brice Stanley. I am sure that he has never seen another child like Billy Ray but he is sharp in his medical skills and he listens well so he can use those skills to adapt to Billy Ray’s special needs. When I explain that certain behaviors are "signs" of certain things historically, he believes me and checks it out medically. He was there for us the night Billy Ray was taken back to surgery until he was out of surgery and somewhat stable (3 a.m. if I remember right).

Until tomorrow,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com

New Years Resolutions of a Complex Mom

At this time of year reflection on the past and resolutions for the future tend to occupy our thoughts and conversations. Resolutions are hard to keep for everyone. In families with complex special needs it is more difficult.

All families deal with unexpected events both positive and negative. Both can be stressful. I have compared our life as complex parents to the journey the old ships made before the modern navigational tools and lighting systems were available. There are so many unseen hazards in our journey, partly because our children have difficulty communicating what they experience physically, developmentally and emotionally.

Here’s a glimpse into my personality: when Billy Ray has a doctor’s appointment and there is a risk of something serious, I catch up laundry and get things either in a bag or organized so my husband knows what to bring if he is admitted to the hospital. I hide them from Billy Ray so as not to worry him but I desperately need to be prepared. I think this started from years with a terminally ill husband as well as Billy Ray and being caught off guard numerous times. I am the most secure when I know what to expect. The unknown is the scariest part to me.

As I was writing this post, my friend, Keddie, called. Last week her car went out a few blocks from our house. She just got it back Thursday. Friday it went out on her again.
She borrowed car and it went out on her over the weekend. She was talking to me about the Serenity Prayer. I don’t know why I wasn’t thinking of it in this post because I wrote about it in Parenting Your Complex Child.

We could probably all quote the Serenity Prayer with all its various translations:

God grant me the serenity to accept the things I cannot change,
The courage to change things I can,
And the wisdom to know the difference.

It sounds so simple. There is so many things that we can do for our complex children. We can make visuals, find the right school program, plan schedules, see to medical care, proper diets, etc., etc. There are some things that we must accept and that is where it gets more difficult. It takes wisdom plus to know the difference. It is something I still struggle with from time to time.

This year I resolve to TRY to:

• Do the things that make me stronger (such as my personal devotions, haircuts, doing my nails and shining our dinging room table) because if I am stronger I have more to give to Billy Ray.


• Do everything that I can to give Billy Ray a life that is comfortable for him.


• Accept that there are some things I can’t change for him no matter how much I love him.


• Share what I have learned in our journey with parents in the same struggle and learn from them in the process.


• Recognize that I can’t do everything I want to do.


• Try not to get too puffed up because Walmart is carrying my book (smile).

Until tomorrow,
Peggy Lou Morgan
http://www.lighthouseparents.com/
http://www.parentingyourcomplexchild.com/