I have been haunted lately by the reality of what we don’t know that might make a real difference in the lives of our children and adult children.
As most of my regular readers know, Billy Ray has chronic pancreatitis, which comes with severe pain and other issues such as pancreatic insufficiency, which has similarities to diabetes. When he was originally diagnosed, I was told that it was caused by Depakote, which he had taken for a number of years for his bipolar. Early last summer he was referred to the chronic pain management clinic at OHSU. There I learned that they see many patients with Down syndrome and pancreatitis.
During research for my first book I spoke to several doctors and medical schools about how much training medical providers are actually given regarding children and adults with special needs. The phrase “touched on lightly” seemed to come up in many conversations as an example of how little actual training in special needs was provided to medical students.
According to the National Association for the Dually Diagnosed (an association for people with both developmental disabilities and mental illness diagnoses), a survey of doctors in the state of Illinois found that, out of 312 respondents (a 24 percent response rate), 95 percent acknowledged that they treat patients with developmental disabilities and 70 percent acknowledged that they had no formal training in the area.
In the foreword to Parenting Your Complex Child, genetic counselor Kate Crowe alluded to the problem as well:
“Medical researchers don't study many complex children. As health care providers, we depend on the published research to inform us so we may provide advice and guidance to families. If a patient is "complex", and doesn't fit the description of a single condition described in the research literature, we are left with little to share. Teaching parents to observe and problem-solve empowers them to fill in the information gaps for themselves.”
In Billy Ray’s case the enlarged pancreas, which may have been the beginning of the pancreatitis was not found easily. He had been sick for a couple of months and nothing definite enough to be causing his rapid deterioration could be found. I have written about that experience here.
As shared in the post linked above, when I took Billy Ray to the emergency room in July 2005 the emergency room doctor wanted to send him home on increased pysch meds. The cause of his severe pain was only dealt with after I advocated strongly (read that blew up) and further testing was done.
The more we know about his medical needs the more we are able to deal with his behavior issues. It has certainly made a difference in his life. I can’t help but wonder with doctors not being given enough information about things that might be common in certain disabilities and parents having no way of knowing, how many behavior problems are being treated with pysch meds (which don't really work anyway) when they are really medical issues.
Until next time,
Peggy Lou Morgan
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Showing posts with label Communication by Behavior. Show all posts
Showing posts with label Communication by Behavior. Show all posts
Saturday, October 31, 2009
Wednesday, March 18, 2009
Communication by Behavior (Reading the Signs) Revisited
This post is revisiting a topic I have covered several times in different ways since the beginning of this blog in 2005. It seems important to touch on it again because several parents have emailed about their frustration relative to their child’s behavior. A common line is “we are held captive to his behavior” or “it is impossible to plan anything because we never know she will respond”. Many want to know what medications Billy Ray takes or what medications will treat behavior problems with their child.
I am not anti medication but we use the very minimum necessary. I have found over the past 24 years of being Billy Ray’s Mom (he was adopted at 15 months old) that medication is a last resort for behavior issues. What works for us is reading the signs relative to his behavior. Two posts on this topic are Change is Coming – Reading Your Child’s Behavior and Reading Signs in my Complex Son. There are many others under the label Communication by Behavior.
When you allow your child to show you what he needs to feel safe and comfortable and adapt his environment, schedule, etc., etc. as close as possible to his comfort level life becomes much more comfortable for him and for the whole family.
Some have written that it is not fair for one member of the family to have things his way. I do understand that feeling. For me, it came to a point that I learned what Billy Ray can and cannot incorporate or understands. His logics are not mine. If he is confused by an aspect of the routine or environment we can get stuck and ruin a day or even longer periods of time. By doing things the way that he can understand or accept, it changes the flow of whatever we are doing. If that means we have to do things differently than another member of the family wishes but we will not get stuck it might well be worth it, depending on the situation.
Others have written that they don’t have time for the documentation, etc. suggested in Parenting Your Complex Child. My response is that being stuck with meltdowns or behavior issues takes more time than we realize. When we learn to read the signs, adapt to the child’s needs and communicate the child as he or she is to the professionals involved, it changes family life as well as the child’s. It takes time and initially a lot more energy than we might think we can muster but in the end it saves time, energy and frustration. It is really a choice of how you will spend your energy and that of your child and how much frustration you can cope with.
As aside, I am not keeping the blogs up the way I want, slower to answer email and moderate comments because I am getting more email and comments these days. I have decided that is partly my fault because many of the things I would respond is already on the blogs but hard to find because it has been archived by date. I changed the blog template today and am in the process of labeling every old post by categories. If you have any suggestions or comments please let me know.
Until next time,
Peggy Lou Morgan
For a list of my blogs and websites see www.peggyloumorgan.com
I am not anti medication but we use the very minimum necessary. I have found over the past 24 years of being Billy Ray’s Mom (he was adopted at 15 months old) that medication is a last resort for behavior issues. What works for us is reading the signs relative to his behavior. Two posts on this topic are Change is Coming – Reading Your Child’s Behavior and Reading Signs in my Complex Son. There are many others under the label Communication by Behavior.
When you allow your child to show you what he needs to feel safe and comfortable and adapt his environment, schedule, etc., etc. as close as possible to his comfort level life becomes much more comfortable for him and for the whole family.
Some have written that it is not fair for one member of the family to have things his way. I do understand that feeling. For me, it came to a point that I learned what Billy Ray can and cannot incorporate or understands. His logics are not mine. If he is confused by an aspect of the routine or environment we can get stuck and ruin a day or even longer periods of time. By doing things the way that he can understand or accept, it changes the flow of whatever we are doing. If that means we have to do things differently than another member of the family wishes but we will not get stuck it might well be worth it, depending on the situation.
Others have written that they don’t have time for the documentation, etc. suggested in Parenting Your Complex Child. My response is that being stuck with meltdowns or behavior issues takes more time than we realize. When we learn to read the signs, adapt to the child’s needs and communicate the child as he or she is to the professionals involved, it changes family life as well as the child’s. It takes time and initially a lot more energy than we might think we can muster but in the end it saves time, energy and frustration. It is really a choice of how you will spend your energy and that of your child and how much frustration you can cope with.
As aside, I am not keeping the blogs up the way I want, slower to answer email and moderate comments because I am getting more email and comments these days. I have decided that is partly my fault because many of the things I would respond is already on the blogs but hard to find because it has been archived by date. I changed the blog template today and am in the process of labeling every old post by categories. If you have any suggestions or comments please let me know.
Until next time,
Peggy Lou Morgan
For a list of my blogs and websites see www.peggyloumorgan.com
Sunday, October 22, 2006
Reflections on Communication by Behavior..10/22/06
I am writing this in Billy Ray’s room before sunrise Sunday morning. All of a sudden it dawns on me we have the old Billy Ray back – the easier one to figure out. You will note that I didn’t say “easy” to figure out. My groggy mind is flooded with some of the changing phases.
That horrifying and wonderful first day, March 29, 1984, when my mother and I went to the adoption agency to pick Billy Ray up he was smiley and happy until we got into the car and he screamed all the way home. Because he was still on soy formula and baby food at 15 months old we had to stop at the store. My mother tried to comfort him but he screamed the whole time I was in the store.
He ate more for his lunch than his former adoptive parents said he ate in a whole day so we decided he must have been hungry but he continued to cry and scream. I rocked him and sang to him trying to get him down for a nap He continued to scream. Mom took over and tried rocking him and giving him a bottle. He continued to scream. Both Mom and I feel dejected. She said she had always been able to comfort babies and couldn’t figure it out. I felt he just didn’t want me.
Finally we put him down in his crib to cry himself to sleep. Once we took his shoes off he stopped crying. His little feet had been crammed into shoes that were two sizes too small for him. He woke up two hours later the smiling happy baby enjoying his new crib and toys pictured here.
In the past 22 years we have spent together, Billy Ray’s changing behavior has often been his way of communicating something needed adjustment. It could be as simple as he’s got energy he needs to release or the bright lights are bothering him or as complicated as some physical problem he can’t communicate but it generally has means something.
The ever present challenge is to figure out what he is communicating. This morning he woke up before 5 a.m. very noisy and bouncing in his bed. I went through the full gamut, did he need to go to the bathroom, was he is pain, etc., etc. Alas, I realize this is the way our mornings were before the range of physical issues the past couple of years. He is feeling better. Mornings are noisy until he “gets it out” of his system. He is happy and full of energy. It is time to wake up and get on with our day whether the family is ready or not.
Until next time,
Peggy Lou Morgan
My Other Blogs: Amazon Author Connect and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom
Parenting Your Complex Child Yahoo Group
That horrifying and wonderful first day, March 29, 1984, when my mother and I went to the adoption agency to pick Billy Ray up he was smiley and happy until we got into the car and he screamed all the way home. Because he was still on soy formula and baby food at 15 months old we had to stop at the store. My mother tried to comfort him but he screamed the whole time I was in the store.
He ate more for his lunch than his former adoptive parents said he ate in a whole day so we decided he must have been hungry but he continued to cry and scream. I rocked him and sang to him trying to get him down for a nap He continued to scream. Mom took over and tried rocking him and giving him a bottle. He continued to scream. Both Mom and I feel dejected. She said she had always been able to comfort babies and couldn’t figure it out. I felt he just didn’t want me.
Finally we put him down in his crib to cry himself to sleep. Once we took his shoes off he stopped crying. His little feet had been crammed into shoes that were two sizes too small for him. He woke up two hours later the smiling happy baby enjoying his new crib and toys pictured here.
In the past 22 years we have spent together, Billy Ray’s changing behavior has often been his way of communicating something needed adjustment. It could be as simple as he’s got energy he needs to release or the bright lights are bothering him or as complicated as some physical problem he can’t communicate but it generally has means something.
The ever present challenge is to figure out what he is communicating. This morning he woke up before 5 a.m. very noisy and bouncing in his bed. I went through the full gamut, did he need to go to the bathroom, was he is pain, etc., etc. Alas, I realize this is the way our mornings were before the range of physical issues the past couple of years. He is feeling better. Mornings are noisy until he “gets it out” of his system. He is happy and full of energy. It is time to wake up and get on with our day whether the family is ready or not.
Until next time,
Peggy Lou Morgan
My Other Blogs: Amazon Author Connect and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom
Parenting Your Complex Child Yahoo Group
Monday, July 3, 2006
Reading the Signs AGAIN...7/3/06
The weekend has been a bit up and down. Billy Ray has continued to have pain some of which may be caused by the medication for the yeast in his esophagus. Two of his medical providers have said that it could cause irritation and even stinging.
As in the past he has had severe pain sometimes with communication by behavior. Once the pain is treated with his meds, he is anxious to be busy at least for a short time. This weekend he went for short periods with his stepfather to our storage unit to help organize and remove what we can. It is just around the corner from us so when he is tired he can come home and go back later if he wants to.
The revised picture schedule for the week is now in draft. He seems to have more irritation during the week than on the weekend. At this point, I am trying to easedrop a bit to ascertain if he is having more pain, additional staff training would be helpful or the schedule needs more honing. It is a constant need to Read the Signs.
When there doesn’t seem to be any easy answers I tend to pull away as much as possible and try to seek guidance spiritually. That part of the journey is an important one but not necessarily what you expect to hear about when you come to this blog. I have created another blog that will specifically discuss the spiritual part of our journey. It is Lighthouse Parents Blog if you would care to visit.
Until next time,
Peggy Lou Morgan
Amazon Blog
Parenting Your Complex Child Yahoo Group
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Lighthouse Parents Blog
As in the past he has had severe pain sometimes with communication by behavior. Once the pain is treated with his meds, he is anxious to be busy at least for a short time. This weekend he went for short periods with his stepfather to our storage unit to help organize and remove what we can. It is just around the corner from us so when he is tired he can come home and go back later if he wants to.
The revised picture schedule for the week is now in draft. He seems to have more irritation during the week than on the weekend. At this point, I am trying to easedrop a bit to ascertain if he is having more pain, additional staff training would be helpful or the schedule needs more honing. It is a constant need to Read the Signs.
When there doesn’t seem to be any easy answers I tend to pull away as much as possible and try to seek guidance spiritually. That part of the journey is an important one but not necessarily what you expect to hear about when you come to this blog. I have created another blog that will specifically discuss the spiritual part of our journey. It is Lighthouse Parents Blog if you would care to visit.
Until next time,
Peggy Lou Morgan
Amazon Blog
Parenting Your Complex Child Yahoo Group
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Lighthouse Parents Blog
Wednesday, March 8, 2006
Communication by Behavior - Messages
When my husband was telling my mother-in-law about getting the advanced copies of Parenting Your Complex Child , signing and mailing to special folks she teased that the hat she made for me is stretchy but if it won’t stretch enough she’d make another one. No need of that Billy Ray will keep me humble.
I shared how Billy Ray had not had aggression for 10 days. The medical and dental issues seemed to be stabilizing so we could do our thing to get things working best for him now. Yesterday morning he clearly communicated by difficult behavior that it isn’t there yet. In the morning he was aggressive and by evening he clearly didn’t feel well.
Sometimes it feels as though we will never “be there” but we are so much better at reading the signs than we used to be. Now we can look at his “communications” and come to solutions quicker. We were able to ascertain that he wasn’t feeling well and give him something for pain. He slept well and is back to being the usual Billy Ray (noisy and bouncing) this morning planning to deliver Meals on Wheels.
I discovered the website David Pitonyak, PhD yesterday. Dr. Pitonyak writes: “My practice is based upon a simple idea: difficult behaviors result from unmet needs. In a sense, difficult behaviors are messages which can tell us important things about a person and the quality of his or her life.”
Dr. Pitonyak goes on to discuss the need to support the support systems (families and support staff). It is very interesting reading. I felt like I had found a kindred spirit reading it. His “messages” are pretty much what I refer to as communication by behavior.
Until next time,
Peggy Lou Morgan
Parenting Your Complex Child Yahoo Group
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
I shared how Billy Ray had not had aggression for 10 days. The medical and dental issues seemed to be stabilizing so we could do our thing to get things working best for him now. Yesterday morning he clearly communicated by difficult behavior that it isn’t there yet. In the morning he was aggressive and by evening he clearly didn’t feel well.
Sometimes it feels as though we will never “be there” but we are so much better at reading the signs than we used to be. Now we can look at his “communications” and come to solutions quicker. We were able to ascertain that he wasn’t feeling well and give him something for pain. He slept well and is back to being the usual Billy Ray (noisy and bouncing) this morning planning to deliver Meals on Wheels.
I discovered the website David Pitonyak, PhD yesterday. Dr. Pitonyak writes: “My practice is based upon a simple idea: difficult behaviors result from unmet needs. In a sense, difficult behaviors are messages which can tell us important things about a person and the quality of his or her life.”
Dr. Pitonyak goes on to discuss the need to support the support systems (families and support staff). It is very interesting reading. I felt like I had found a kindred spirit reading it. His “messages” are pretty much what I refer to as communication by behavior.
Until next time,
Peggy Lou Morgan
Parenting Your Complex Child Yahoo Group
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Monday, February 13, 2006
There Was A Reason for Billy Ray's Communication by Behavior
Billy Ray’s credibility has been proved again!! Many times he communicates pain by extreme behavior and nothing in the medical procedures explain it. Eventually we find out he was having some medical issues going on that weren’t obviously.
Today was another case in point. When his behavior began to deteriorate in June, I investigated dental issues first. There was nothing in the x-ray or exam that showed he should be having major pain. There were some things to deal with but not believed emergencies. We scheduled an appointment to deal with needed work. However, that appointment had to be cancelled. He was hospitalized with leaking appendix and other issues. Then both the dentist and the medical provider felt he needed to be medically stable before pursuing the dental work.
Recently he went back to the dentist for an emergency appointment because he seemed to be having dental pain. X-rays were taken and Dr. Hester, a very kind and thorough dentist, put pressure on anything that might be causing pain and found nothing to explain the pain Billy Ray seemed to be communicating by his behavior.
Today he went back to Dr. Hester to have the work completed. Sure enough, a tooth with an extraordinarily difficult root and decay did not show on the x-rays. That is probably partially because it is very difficult to x-ray Billy Ray. Dr. Hester said that it had to be causing him extreme pain.
There are other issues involved in his communication by behavior such as the hypothyroid and difficulty maintaining appropriate blood level on his mood stabilizer. However, removing this source of pain will surely help.
I have been saying to several people involved with Billy Ray that I knew there was something we could not find. I didn’t know what but just knew that I knew. There was nothing else to do but practice the lighthouse concept. This morning I prayed that if the problem were dental he would help Dr. Hester to find it.
My advice is trust your gut for such things. When you have adapted his life to what works for him or her so you know it isn’t something at home or at school, keep searching for the answers.
I think about Billy Ray’s behavior when his appendice was leaking and the difficulty in demonstrating it to the emergency room doctor and this situation. Then remember the situation we talked about in My Outrage…Mother Gets Suspended Sentence For Killing Son and wonder if Patrick was trying to communicate something to his mother by his behavior.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Today was another case in point. When his behavior began to deteriorate in June, I investigated dental issues first. There was nothing in the x-ray or exam that showed he should be having major pain. There were some things to deal with but not believed emergencies. We scheduled an appointment to deal with needed work. However, that appointment had to be cancelled. He was hospitalized with leaking appendix and other issues. Then both the dentist and the medical provider felt he needed to be medically stable before pursuing the dental work.
Recently he went back to the dentist for an emergency appointment because he seemed to be having dental pain. X-rays were taken and Dr. Hester, a very kind and thorough dentist, put pressure on anything that might be causing pain and found nothing to explain the pain Billy Ray seemed to be communicating by his behavior.
Today he went back to Dr. Hester to have the work completed. Sure enough, a tooth with an extraordinarily difficult root and decay did not show on the x-rays. That is probably partially because it is very difficult to x-ray Billy Ray. Dr. Hester said that it had to be causing him extreme pain.
There are other issues involved in his communication by behavior such as the hypothyroid and difficulty maintaining appropriate blood level on his mood stabilizer. However, removing this source of pain will surely help.
I have been saying to several people involved with Billy Ray that I knew there was something we could not find. I didn’t know what but just knew that I knew. There was nothing else to do but practice the lighthouse concept. This morning I prayed that if the problem were dental he would help Dr. Hester to find it.
My advice is trust your gut for such things. When you have adapted his life to what works for him or her so you know it isn’t something at home or at school, keep searching for the answers.
I think about Billy Ray’s behavior when his appendice was leaking and the difficulty in demonstrating it to the emergency room doctor and this situation. Then remember the situation we talked about in My Outrage…Mother Gets Suspended Sentence For Killing Son and wonder if Patrick was trying to communicate something to his mother by his behavior.
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/
Monday, December 26, 2005
Reading the Signs in My Complex Son
When I wrote a Change is Coming on November 13th, it was clear something was on the horizon but it is always hard to be sure what. By Thanksgiving Day we had increasingly out of control behavior. Having ruled everything physical out it was clear that we were in a manic phase. His Bipolar meds had to be changed.
We are reading the signs again this morning. Billy Ray slept long nights several times last week. His support staff had to wait as much as a couple of hours several mornings to start his schedule. Of course, that changed on Saturday the one day we could sleep in because we don’t have to get up to let support staff in. He woke up at 6 ish.
Saturday we had some confusion/agitation probably because of Christmas and having people in and out during the day. He did okay when our consultant/friend, Keddie came with one of her special friends and brought Billy Ray a bouquet of balloons. Of course, he didn’t show his excitement with the balloons until after she left so Keddie didn’t get so to see how much he liked them. Later Ron, his support staff and Ron’s niece came by. He enjoyed their visit but was agitated when Ron left.
Sunday he was great in the morning. Co-operation with allowing Mom to get ready for church after getting him ready is rare but it worked this week. He has been too manic to go to church for several weeks. It was a treat for both of us to go.
A favorite part of church is the music especially songs that he can clap to. When he can get into the music like he does it calms him enough that he can sit through the rest of the service without too many incidents. Yesterday there were Christmas carols during the main music part of the service. I expected we’d have problems with him during the sermon because he hadn’t had the kind of participation in the music he needs to stay calm. Didn’t happen. He was quiet and calm during the entire sermon. He was thrilled when a song after the message was something he could clap to. He enjoyed himself and the congregation enjoyed watching him as always.
Instead of just appreciating the good times, it is always necessary to ask “what’s up with this” because exceptional calm can be a sign of something coming too. Further “signs” came later. He fell asleep at 2:30 p.m., waking up for half an hour about 8:30 p.m. and going back to sleep until 5:45 a.m.
So, as always, I am reading the signs this morning. Is this the end of his manic phase and he is catching up or is something physical coming? I thought I would share this sign reading experience with my blogger friends to help you learn to read signs in your own child.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
We are reading the signs again this morning. Billy Ray slept long nights several times last week. His support staff had to wait as much as a couple of hours several mornings to start his schedule. Of course, that changed on Saturday the one day we could sleep in because we don’t have to get up to let support staff in. He woke up at 6 ish.
Saturday we had some confusion/agitation probably because of Christmas and having people in and out during the day. He did okay when our consultant/friend, Keddie came with one of her special friends and brought Billy Ray a bouquet of balloons. Of course, he didn’t show his excitement with the balloons until after she left so Keddie didn’t get so to see how much he liked them. Later Ron, his support staff and Ron’s niece came by. He enjoyed their visit but was agitated when Ron left.
Sunday he was great in the morning. Co-operation with allowing Mom to get ready for church after getting him ready is rare but it worked this week. He has been too manic to go to church for several weeks. It was a treat for both of us to go.
A favorite part of church is the music especially songs that he can clap to. When he can get into the music like he does it calms him enough that he can sit through the rest of the service without too many incidents. Yesterday there were Christmas carols during the main music part of the service. I expected we’d have problems with him during the sermon because he hadn’t had the kind of participation in the music he needs to stay calm. Didn’t happen. He was quiet and calm during the entire sermon. He was thrilled when a song after the message was something he could clap to. He enjoyed himself and the congregation enjoyed watching him as always.
Instead of just appreciating the good times, it is always necessary to ask “what’s up with this” because exceptional calm can be a sign of something coming too. Further “signs” came later. He fell asleep at 2:30 p.m., waking up for half an hour about 8:30 p.m. and going back to sleep until 5:45 a.m.
So, as always, I am reading the signs this morning. Is this the end of his manic phase and he is catching up or is something physical coming? I thought I would share this sign reading experience with my blogger friends to help you learn to read signs in your own child.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Friday, November 25, 2005
Regrouping AGAIN...More Communication by Behavior
Yesterday was a contradiction in many ways. It started out by getting my grandma’s recipe for scalloped potatoes in the oven and making the stuffing for the turkey. I was thinking of what I am thankful for. When I got to a stopping point in dinner preparations I came into my office and started writing a blog post relative to something I have always wanted to express…my gratitude to Billy Ray’s birth parents for giving him life and placing him for adoption when they didn’t feel they could handle a disabled child.
Before I could finish that post Billy Ray’s behavior became difficult. Support staff was here with us but it took both of us to intervene when Billy Ray was throwing furniture, knocking things out of the china hutch, etc., etc. When that happens I invariably go through a period of feeling defeated and a failure at providing appropriate care for my beloved son. I wonder if I should be sharing any of my methods for working with Billy Ray if we still relapse. After feeling sorry for myself for a while, I know that the best I have to offer you is to be real about what we experience so that if you experience similar you will know you aren’t alone.
Billy Ray is more verbal than some complex children. However, when it comes to communicating his frustration or physical pain he is not able to “get it out” in a way that helps us to know what he is experiencing. Many times his behavior is the best indicator that something is wrong in his life. I wrote about this in two recent posts Communication by Behavior and Change is Coming.
When unusual behaviors occur when we think we have him stabilized it means we need to regroup. I talk to Billy Ray as though he could carry on a two-way conversation. I want him to feel a part of the solution for his own life. Yesterday, I told him that we are going to look at his schedule to see if it might be irritating or if he is hurting some place. I asked him to let me know in anyway that he can what is bothering him.
We try different things. Some work others don’t. For example, his psychiatrist suggested Omega 3 fish oils for his behavior which we did. When Billy Ray had some pretty severe behaviors a week and a half ago, his primary medical provider suggested that we hold the fish oil for a week to see if that was irritating his gastritis and causing him severe pain. With yesterday’s behavior it is clear that isn't the problem.
After events like this I read the journal again and sometimes twice. It is amazing how looking at events that happened before behaviors seem more clear reading about them a week later than the day they happen. Sometimes the trigger to a behavior is there and you wonder why you didn’t notice before. When you are in the midst of a behavior crisis it is hard to see things as clearly.
Sometimes it is his schedule, others times it is physical. He is demonstrating signs that it is physical and also that he wants to be more involved in activities. In my Change is Coming post I wrote that he is demonstrating by doing more things that he wants to be busier. On the other hand, he is demonstrating that something is wrong physically in several ways 1) he just can't get comfortable in his clothes and is wanting sweats on in the middle of the day (it is usually hard to get him to put them on just to sleep in), 2) he is more in a Mommie phase where he wants me to do everything for him every though he enjoys a lot of "buddy" activities with his support staff and his stepfather normally and 3) his behavior is more severe than usual (the most severe behaviors have occurred when something is physically wrong). I have spoken to all the doctors involved and we can't find anything. The two issues seem to be fighting each other: he wants to be busier but doesn't really feel like it not having totally bounced back from surgery this summer.
While I hope that Parenting Your Complex Child (AMACOM Books April 2006) will make day to day life much better for your child and the whole family, it is a continuing effort not a once done, always done.
In a way complex specials needs children such as Billy Ray are a contradiction. He needs exact sequence (order) in activities and consistency about his schedule but he does change without notice. We then must figure out what he wants changed and fix it. Billy Ray really is my best teacher but it takes close observation.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Before I could finish that post Billy Ray’s behavior became difficult. Support staff was here with us but it took both of us to intervene when Billy Ray was throwing furniture, knocking things out of the china hutch, etc., etc. When that happens I invariably go through a period of feeling defeated and a failure at providing appropriate care for my beloved son. I wonder if I should be sharing any of my methods for working with Billy Ray if we still relapse. After feeling sorry for myself for a while, I know that the best I have to offer you is to be real about what we experience so that if you experience similar you will know you aren’t alone.
Billy Ray is more verbal than some complex children. However, when it comes to communicating his frustration or physical pain he is not able to “get it out” in a way that helps us to know what he is experiencing. Many times his behavior is the best indicator that something is wrong in his life. I wrote about this in two recent posts Communication by Behavior and Change is Coming.
When unusual behaviors occur when we think we have him stabilized it means we need to regroup. I talk to Billy Ray as though he could carry on a two-way conversation. I want him to feel a part of the solution for his own life. Yesterday, I told him that we are going to look at his schedule to see if it might be irritating or if he is hurting some place. I asked him to let me know in anyway that he can what is bothering him.
We try different things. Some work others don’t. For example, his psychiatrist suggested Omega 3 fish oils for his behavior which we did. When Billy Ray had some pretty severe behaviors a week and a half ago, his primary medical provider suggested that we hold the fish oil for a week to see if that was irritating his gastritis and causing him severe pain. With yesterday’s behavior it is clear that isn't the problem.
After events like this I read the journal again and sometimes twice. It is amazing how looking at events that happened before behaviors seem more clear reading about them a week later than the day they happen. Sometimes the trigger to a behavior is there and you wonder why you didn’t notice before. When you are in the midst of a behavior crisis it is hard to see things as clearly.
Sometimes it is his schedule, others times it is physical. He is demonstrating signs that it is physical and also that he wants to be more involved in activities. In my Change is Coming post I wrote that he is demonstrating by doing more things that he wants to be busier. On the other hand, he is demonstrating that something is wrong physically in several ways 1) he just can't get comfortable in his clothes and is wanting sweats on in the middle of the day (it is usually hard to get him to put them on just to sleep in), 2) he is more in a Mommie phase where he wants me to do everything for him every though he enjoys a lot of "buddy" activities with his support staff and his stepfather normally and 3) his behavior is more severe than usual (the most severe behaviors have occurred when something is physically wrong). I have spoken to all the doctors involved and we can't find anything. The two issues seem to be fighting each other: he wants to be busier but doesn't really feel like it not having totally bounced back from surgery this summer.
While I hope that Parenting Your Complex Child (AMACOM Books April 2006) will make day to day life much better for your child and the whole family, it is a continuing effort not a once done, always done.
In a way complex specials needs children such as Billy Ray are a contradiction. He needs exact sequence (order) in activities and consistency about his schedule but he does change without notice. We then must figure out what he wants changed and fix it. Billy Ray really is my best teacher but it takes close observation.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Sunday, November 13, 2005
A Change is Coming...Reading Your Child's Behavior
Something is different in the way Billy Ray is acting. Maybe he is trying to do more things or maybe he is refusing to do his normal schedule. During these times I have learned to be especially mindful of these little signs.
Case in point, the past few days I have seen him picking up specks of paper that have dropped on the floor, straightening placemats on the table. This generally means he is ready for a schedule change. A consultant friend once said that if we don’t give him enough to do he will find something though it may not be what we want him to do.
This is probably a turning point for Billy Ray. He has had much adjustment in the past year. His school eligibility ended, we moved to a new community, have tried three new support staff, two of which are still with us and he has the life threatening illness that I wrote about earlier. He has taken several months to bounce back from the illness and a new diagnosis (diabetes) has come in the process. However, he seems to be feeling stronger, is confident in his full time support staff, Ron, and is communicating by this behavior that he is ready to move forward.
I spent last evening drafting a new schedule. We will add back some of the activities he did before he was ill and gradually give him more to do. We will add more community activities. Instructions must be written down so that support staff and family will assist in the activities in a consistent way. I plan to write about consistency and sequence of activities tomorrow. For now, change of schedules take several steps to achieve.
Being aware of the subtle changes in behavior is vitally important to keeping things smooth in our day to day life.
Until tomorrow,
Peggy Lou
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Case in point, the past few days I have seen him picking up specks of paper that have dropped on the floor, straightening placemats on the table. This generally means he is ready for a schedule change. A consultant friend once said that if we don’t give him enough to do he will find something though it may not be what we want him to do.
This is probably a turning point for Billy Ray. He has had much adjustment in the past year. His school eligibility ended, we moved to a new community, have tried three new support staff, two of which are still with us and he has the life threatening illness that I wrote about earlier. He has taken several months to bounce back from the illness and a new diagnosis (diabetes) has come in the process. However, he seems to be feeling stronger, is confident in his full time support staff, Ron, and is communicating by this behavior that he is ready to move forward.
I spent last evening drafting a new schedule. We will add back some of the activities he did before he was ill and gradually give him more to do. We will add more community activities. Instructions must be written down so that support staff and family will assist in the activities in a consistent way. I plan to write about consistency and sequence of activities tomorrow. For now, change of schedules take several steps to achieve.
Being aware of the subtle changes in behavior is vitally important to keeping things smooth in our day to day life.
Until tomorrow,
Peggy Lou
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Thursday, October 20, 2005
Communication by Behavior
Communication is often difficult for complex special needs child. They may have a hard time telling you when something hurts, they are confused or something is bothering them. Negative behaviors (aggression, property destruction, excessive activity or meltdowns where he throws himself on the floor refusing to move - to name a few) are one way of communicating that something isn't right.
The challenge to parents or caregivers is to figure out what is behind the behavior. Recently Billy Ray had leaking appendice and multiple other problems that were difficult to diagnose because he was already on antibiotics for a skin problem so the lab tests didn't show the infection. By the time it was discovered he was literally pulling out handfuls of my hair. Behavior can be just to get attention. On the other hand, it can be a serious communication such as this. Careful observation is necessary to figure it out. Even then it may take a while to find the cause.
No one likes to be punched or kicked. When someone you love abuses you there is a sense of betrayal or profound sadness. Accepting it as my child communicating his needs to me took more patience and prayer than I ever imagined I'd be capable of.
Meeting your child's needs reduces the negative behaviors. Understanding those needs is a challenge in itself. For Billy Ray it meant developing a method for giving him information through visuals as well as verbally, a schedule he could count on and maintaining a journal so that I could track triggers. Adapting his life to his comfort level was not a slam dunk but it made a big difference in his need to communicate by negative behavior.
Until tomorrow,
Peggy
www.parentingyourcomplexchild.com
www.lighthouseparents.com
The challenge to parents or caregivers is to figure out what is behind the behavior. Recently Billy Ray had leaking appendice and multiple other problems that were difficult to diagnose because he was already on antibiotics for a skin problem so the lab tests didn't show the infection. By the time it was discovered he was literally pulling out handfuls of my hair. Behavior can be just to get attention. On the other hand, it can be a serious communication such as this. Careful observation is necessary to figure it out. Even then it may take a while to find the cause.
No one likes to be punched or kicked. When someone you love abuses you there is a sense of betrayal or profound sadness. Accepting it as my child communicating his needs to me took more patience and prayer than I ever imagined I'd be capable of.
Meeting your child's needs reduces the negative behaviors. Understanding those needs is a challenge in itself. For Billy Ray it meant developing a method for giving him information through visuals as well as verbally, a schedule he could count on and maintaining a journal so that I could track triggers. Adapting his life to his comfort level was not a slam dunk but it made a big difference in his need to communicate by negative behavior.
Until tomorrow,
Peggy
www.parentingyourcomplexchild.com
www.lighthouseparents.com
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