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
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Tuesday, January 31, 2006
Monday, January 30, 2006
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/
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/
Saturday, January 28, 2006
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/
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/
Friday, January 27, 2006
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
Thursday, January 26, 2006
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/
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/
Wednesday, January 25, 2006
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/
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/
Tuesday, January 24, 2006
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/
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/
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