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/
Wednesday, January 25, 2006
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/
Monday, January 23, 2006
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/
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/
Saturday, January 21, 2006
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
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
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
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Friday, January 20, 2006
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/
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/
Thursday, January 19, 2006
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
Wednesday, January 18, 2006
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
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