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/
Wednesday, March 8, 2006
Tuesday, March 7, 2006
Where's the Rest of the Story..My Response to 2/19/06 SF Chronicle Article on Special Education
Blogsphere is ablaze with comments on the San Francisco Chronicle’s February 19th article on Special Education . See the follow up post by Charlie Fox on Special Ed Law Blog and his initial post, Progranda War Carried Out in the Press .
My first reaction to the SF Chronicle article was that the war has a new battlefield. In the preface to Parenting Your Complex Child I described parenting a complex child as a war with many battlefields: home, dealing with school and other agencies and going out in public. The media has been covering mostly high functioning children but I have never read a piece that attacked parents until this piece. Will the media now be a new battlefield for parents to deal with?
My second reaction to the article is that it was very one-sided. Very little was included from the parents’ prospective. I found myself wishing for Paul Harvey’s “rest of the story”. Here’s the response I sent to the San Francisco Chronicle this morning:
“Reading your 2/19/06 Special Education piece I wondered where’s “the rest of the story”. As mom of a special needs adult, I know the other side of the story. Lawmakers tried to provide for disabled children. Unfortunately, red tape and combat zones came with their good intentions.
Explaining your child’s needs to “the team” and being treated as “only the dumb parent” makes it difficult to create an appropriate plan that is also cost effective for the district. I agree that parents need to get real in their expectations of what a district can and cannot do but a possible compromise can only be reached if both sides are listened to and respected.
All special needs children are unique. Many cannot be pushed into existing systems. They need individualized systems created for them. Much of that can be created at much less cost if the district is willing to look at doing things the way the child needs rather than the way it has always been done before. To accomplish this requires team building advocacy on both sides.
My book Parenting Your Complex Child (AMACOM Books April 2006) came out of our struggle with these very issues.”
The rest of the story is long and most of us have experienced chapter and verse. We can experience “the dumb parent treatment” whether communicated in words or attitude says to us “what do you know, you’re only the dumb parent.” We may be accused of not seeing our child objectively. It is unquestionably a battlefield.
The problem is when the war is going on the casualty is our children. Until we can start negotiating a peace plan nothing changes for our children. Programs don’t get started, IEP goals aren’t ever agreed on and things do not get better for the child.
It was impossible to tell the rest of the story in 200 word response but it was surely missing for the article.
Until next time,
Peggy Lou Morgan
Parenting Your Complex Child Yahoo Group
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
My first reaction to the SF Chronicle article was that the war has a new battlefield. In the preface to Parenting Your Complex Child I described parenting a complex child as a war with many battlefields: home, dealing with school and other agencies and going out in public. The media has been covering mostly high functioning children but I have never read a piece that attacked parents until this piece. Will the media now be a new battlefield for parents to deal with?
My second reaction to the article is that it was very one-sided. Very little was included from the parents’ prospective. I found myself wishing for Paul Harvey’s “rest of the story”. Here’s the response I sent to the San Francisco Chronicle this morning:
“Reading your 2/19/06 Special Education piece I wondered where’s “the rest of the story”. As mom of a special needs adult, I know the other side of the story. Lawmakers tried to provide for disabled children. Unfortunately, red tape and combat zones came with their good intentions.
Explaining your child’s needs to “the team” and being treated as “only the dumb parent” makes it difficult to create an appropriate plan that is also cost effective for the district. I agree that parents need to get real in their expectations of what a district can and cannot do but a possible compromise can only be reached if both sides are listened to and respected.
All special needs children are unique. Many cannot be pushed into existing systems. They need individualized systems created for them. Much of that can be created at much less cost if the district is willing to look at doing things the way the child needs rather than the way it has always been done before. To accomplish this requires team building advocacy on both sides.
My book Parenting Your Complex Child (AMACOM Books April 2006) came out of our struggle with these very issues.”
The rest of the story is long and most of us have experienced chapter and verse. We can experience “the dumb parent treatment” whether communicated in words or attitude says to us “what do you know, you’re only the dumb parent.” We may be accused of not seeing our child objectively. It is unquestionably a battlefield.
The problem is when the war is going on the casualty is our children. Until we can start negotiating a peace plan nothing changes for our children. Programs don’t get started, IEP goals aren’t ever agreed on and things do not get better for the child.
It was impossible to tell the rest of the story in 200 word response but it was surely missing for the article.
Until next time,
Peggy Lou Morgan
Parenting Your Complex Child Yahoo Group
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Monday, March 6, 2006
Let's Talk - YahooGroups List
I have had a YahooGroups list for a while but haven't done much with it. As Parenting Your Complex Child gets out to more parents after its' release next month, this list seems a good place to talk to me and with other parents reading the book about your thoughts and questions.
The link to should take you to it and you can sign-up. If you don't have a YahooGroups membership it will ask you to create one. If you have problems subscribing email me and I will try to help.
Until next time,
Peggy Lou Morgan
parentingyourcomplexchild@yahoogroups.com
www.parentingyourcomplexchild.com
www.lighthouseparents.com
The link to should take you to it and you can sign-up. If you don't have a YahooGroups membership it will ask you to create one. If you have problems subscribing email me and I will try to help.
Until next time,
Peggy Lou Morgan
parentingyourcomplexchild@yahoogroups.com
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Saturday, March 4, 2006
Seeing The Light at the End of the Tunnel
The past year has been a confusing one read Billy Ray’s “communication by behavior” because there were so many things to untangle. Parts of these events have been shared partially in prior posts. It will be easier to follow the chronology and share our joy at making progress to be a bit redundant.
Larry and I made the decision in 2003 to sell our house and move to a cheaper property in a cheaper community so that I could be at home with Billy Ray. We knew that moving Billy Ray would create some issues for him so the decision was not an easy one. We have support staff weekdays but Billy Ray’s medical issues frequently require my constant involvement. Additionally it is hard to maintain staff – a problem experienced by many families with complex children even if funding is available.
In November of 2004 we accepted an offer on our house. Just a few days later, I got the call that Parenting Your Complex Child was accepted for publication. We were elated and stressed by both of these happening at once. There was a house to find, move in only 40 days and a manuscript to finish.
Just as the manuscript was finished and sent to the publisher for their magic late last Spring, Billy Ray’s behavior was deteriorating rapidly. Of course, I questioned everything – was this a delayed reaction to the move, was their a mismatch with support staff, had I been too busy to adequately train staff, were there medical issues we weren’t seeing, etc., etc. We redoubled our attempts at staff training at the same time we looked at medical and dental issues. Behavior issues continued to become more difficult and no answers became immediately obvious.
Billy Ray was being treated for one of his skin infections and taking oral antibiotics. As his behavior became more difficult Brice Stanley, PA-C, did a very thorough workup to try to eliminate any and all medical issues. Eventually he sent us to the hospital where they found no reason for his behavior and were suggesting sending him home on increased psychiatric meds. By that time I knew something medical was going on.
After the strongest advocacy I could muster, the emergency room doctor ordered a catscan. Billy Ray had leaking appendice, enlarged pancreas, gastritis and a beginning ulcer. He was rushed to emergency surgery. The reason they couldn’t find it was because the antibiotics for his skin infections were masking the lab test results. Just 47 hours after the first surgery he was rushed back to emergency surgery with internal bleeding. This time he didn’t resume breathing adequately after surgery and had to be on the ventilator for nine days.
In many ways his recovery from that episode could be described as nothing short of a miracle. I have often said it is what happens when you combine good medical care with prayer.
His behavior since that time and the up and down medical issues has been pretty well documented herein. See the most recent update for more on what we learned.
This week we realized that we substantially have our old Billy Ray (active, noisy, easily confused, etc.) back. The out of control behaviors or physical aggression have not occurred in 10 days. Now that the medical team has done it’s part we can start again to do things that work for Billy Ray in terms of adapting his environment and schedule to reduce confusion and behavior difficulties.
Is he easy now? Of course not. It is a constant need to stay on top of things. When he is going to sleep at night, I often observe his journal that happens to be on his computer. I am able to see patterns of behavior that occur after similar circumstances. We can then modify the circumstances that seem to trigger the problems and avoid. In the alternative we can track things that working and continue them.
Now we can do what works for Billy Ray. We don’t have to be stuck on doing what works for every person with a similar diagnosis because Billy Ray is a beautiful snowflake.
It will be tiring for a while to start again but the sense of satisfaction at seeing progress is what keeps me going.
Until next time,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Larry and I made the decision in 2003 to sell our house and move to a cheaper property in a cheaper community so that I could be at home with Billy Ray. We knew that moving Billy Ray would create some issues for him so the decision was not an easy one. We have support staff weekdays but Billy Ray’s medical issues frequently require my constant involvement. Additionally it is hard to maintain staff – a problem experienced by many families with complex children even if funding is available.
In November of 2004 we accepted an offer on our house. Just a few days later, I got the call that Parenting Your Complex Child was accepted for publication. We were elated and stressed by both of these happening at once. There was a house to find, move in only 40 days and a manuscript to finish.
Just as the manuscript was finished and sent to the publisher for their magic late last Spring, Billy Ray’s behavior was deteriorating rapidly. Of course, I questioned everything – was this a delayed reaction to the move, was their a mismatch with support staff, had I been too busy to adequately train staff, were there medical issues we weren’t seeing, etc., etc. We redoubled our attempts at staff training at the same time we looked at medical and dental issues. Behavior issues continued to become more difficult and no answers became immediately obvious.
Billy Ray was being treated for one of his skin infections and taking oral antibiotics. As his behavior became more difficult Brice Stanley, PA-C, did a very thorough workup to try to eliminate any and all medical issues. Eventually he sent us to the hospital where they found no reason for his behavior and were suggesting sending him home on increased psychiatric meds. By that time I knew something medical was going on.
After the strongest advocacy I could muster, the emergency room doctor ordered a catscan. Billy Ray had leaking appendice, enlarged pancreas, gastritis and a beginning ulcer. He was rushed to emergency surgery. The reason they couldn’t find it was because the antibiotics for his skin infections were masking the lab test results. Just 47 hours after the first surgery he was rushed back to emergency surgery with internal bleeding. This time he didn’t resume breathing adequately after surgery and had to be on the ventilator for nine days.
In many ways his recovery from that episode could be described as nothing short of a miracle. I have often said it is what happens when you combine good medical care with prayer.
His behavior since that time and the up and down medical issues has been pretty well documented herein. See the most recent update for more on what we learned.
This week we realized that we substantially have our old Billy Ray (active, noisy, easily confused, etc.) back. The out of control behaviors or physical aggression have not occurred in 10 days. Now that the medical team has done it’s part we can start again to do things that work for Billy Ray in terms of adapting his environment and schedule to reduce confusion and behavior difficulties.
Is he easy now? Of course not. It is a constant need to stay on top of things. When he is going to sleep at night, I often observe his journal that happens to be on his computer. I am able to see patterns of behavior that occur after similar circumstances. We can then modify the circumstances that seem to trigger the problems and avoid. In the alternative we can track things that working and continue them.
Now we can do what works for Billy Ray. We don’t have to be stuck on doing what works for every person with a similar diagnosis because Billy Ray is a beautiful snowflake.
It will be tiring for a while to start again but the sense of satisfaction at seeing progress is what keeps me going.
Until next time,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Thursday, March 2, 2006
Sample Chapter is Online
Today is a two fer blog. I had already written today's blog when I learned that my publisher, AMACOM Books has the information for the book on their website. You can click here to go to AMACOM's listing for the Parenting Your Complex Child. On the right it there is a place to click for the table of contents and to read a sample chapter.
The "Look Inside" feature is now activated on Amazon so that you can read a sample chapter there (different from the one on AMACOM) and click on the "surprise me" button which brings to you to various parts of the book. I checked it out and was amazed at how much you can see doing that.
I am really glad to have that much online because I know that not every book works for everyone. I once told my editor that I wish I had a dime for every book I spent big bucks on that didn't help. I hope people will like my book but that they have an idea what they are getting. I made every effort to help parents decide what to do for their own child based on their knowledge and experimentation instead of telling them what to do.
Until next time,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com
The "Look Inside" feature is now activated on Amazon so that you can read a sample chapter there (different from the one on AMACOM) and click on the "surprise me" button which brings to you to various parts of the book. I checked it out and was amazed at how much you can see doing that.
I am really glad to have that much online because I know that not every book works for everyone. I once told my editor that I wish I had a dime for every book I spent big bucks on that didn't help. I hope people will like my book but that they have an idea what they are getting. I made every effort to help parents decide what to do for their own child based on their knowledge and experimentation instead of telling them what to do.
Until next time,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Fighting Government Red Tape
The old Billy Ray (before all the medical issues) is reemerging rapidly. Last night was a case in point. He woke up at 4 a.m. content to stay in his bed as long as I was in the room. Believe it or not, a lot of Parenting Your Complex Child was written from his computer in those nights.
I started a new book proposal last night about creating a life for lower functioning children and adults. As I worked the gnawing question was how will government red tape frustrate parents in trying to use my suggestions. The proposal was set aside and a letter drafted for a Congressman I think might be interested in trying to overcome some of that red tape.
If you have examples of how policies prevented your child or adult child from being able to do vocational or other things for fear of losing the medical care or other supports and would like to share with me for that letter to the Congressman please email me.
If we could work together to alleviate some of the red tape it would be better for taxpayers as well as people with disabilities. Maybe people with disabilities could contribute more to their own care if they were allowed to receive certain things without losing urgent medical care, etc.
Perhaps it is naïve to expect Congress to cut through red tape. On the other hand, they cared enough to create Americans with Disabilities (ADA) and the IDEA educational bill. Maybe they care enough to clean up some of the well intentioned but tangled in red tape government policies, which effect our children. It seems worth trying AGAIN.
Until next time,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
I started a new book proposal last night about creating a life for lower functioning children and adults. As I worked the gnawing question was how will government red tape frustrate parents in trying to use my suggestions. The proposal was set aside and a letter drafted for a Congressman I think might be interested in trying to overcome some of that red tape.
If you have examples of how policies prevented your child or adult child from being able to do vocational or other things for fear of losing the medical care or other supports and would like to share with me for that letter to the Congressman please email me.
If we could work together to alleviate some of the red tape it would be better for taxpayers as well as people with disabilities. Maybe people with disabilities could contribute more to their own care if they were allowed to receive certain things without losing urgent medical care, etc.
Perhaps it is naïve to expect Congress to cut through red tape. On the other hand, they cared enough to create Americans with Disabilities (ADA) and the IDEA educational bill. Maybe they care enough to clean up some of the well intentioned but tangled in red tape government policies, which effect our children. It seems worth trying AGAIN.
Until next time,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Wednesday, March 1, 2006
Evaluating Risks
I have been contemplating this post in many ways for months. There is often controversy about the risks and decisions we face with our children whether or not they experience special needs.
The first time my late husband and I were faced with a decision relative to medication use for Billy Ray was very stressful. Billy Ray was seven years old. The word Autism had not yet entered our vocabulary. We were just learning about Bipolar and ADHD. His behavior could sometimes take three of us to control.
“Dr. Ron” (Ronald R. Roy, now deceased) whom I refer to as my mentor from the grave and dedicated Parenting Your Complex Child (together with Billy Ray) was our first pediatric psychiatrist. We talked a lot about risks in those days. The risk of side effects as opposed to the risk of doing nothing. The latter risk is a very real thing to consider. Quality of life issues are always an important consideration.
That first decision was whether to use a anti-seizure drug as mood stabilizer. One of the risks associated with it was a blood count issue that could be dangerous. We struggled with it. Then one day I was talking with my own psychiatrist, asking his opinion about using it for Billy Ray. His statement set the course of my thinking in many other decisions. He assured me Dr. Ron was very cautious about regular testing and could discontinue it quickly enough to minimize the risk.
In discussing risks, a longtime pediatrician once went over the risks of using plain aspirin as an example. If people realized all the risks of aspirin, no one would probably use it. It is such a common part of our culture that no one really thinks about the risks involved.
These, then, are questions we must ask about most decisions relative to our children who experience special needs:
At that time, it appeared the risk of doing nothing meant placing Billy Ray in the state institution (now closed). It would clearly impact the quality of his life. The additional reality was that placed in that kind of setting, he would be medicated anyway. The risk would be minimized by regular blood tests and the medication stopped immediately.
We took the risk. Billy Ray stabilized for several years including the last five years of his father. It enabled him to have a very special time with his Dad. We have considered other medications over the years that the risk seemed just too much.
There are many other risks in life than what medication to use. For example, various support staff have questioned the degree of involvement we also Billy Ray to have in preparing meals. The stove is hot. He could get burned. So could you! So could I! Life is a risk we take each day we wake up. The alternative is risky too.
Billy Ray loves his service dog. If he is experiencing communication by behavior he is mostly likely to express it to someone he feels most secure with – Mom and service dog. The risk is always there that he will get a dog bite. We discussed the benefit of the dog and the risk with the pediatrician years ago. He has never been bitten but he has gained much benefit from having his dogs over the years.
While we should never assume risks haphazardly, it seems so important to always look at both sides including the risk of not doing anything.
Until next time,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
The first time my late husband and I were faced with a decision relative to medication use for Billy Ray was very stressful. Billy Ray was seven years old. The word Autism had not yet entered our vocabulary. We were just learning about Bipolar and ADHD. His behavior could sometimes take three of us to control.
“Dr. Ron” (Ronald R. Roy, now deceased) whom I refer to as my mentor from the grave and dedicated Parenting Your Complex Child (together with Billy Ray) was our first pediatric psychiatrist. We talked a lot about risks in those days. The risk of side effects as opposed to the risk of doing nothing. The latter risk is a very real thing to consider. Quality of life issues are always an important consideration.
That first decision was whether to use a anti-seizure drug as mood stabilizer. One of the risks associated with it was a blood count issue that could be dangerous. We struggled with it. Then one day I was talking with my own psychiatrist, asking his opinion about using it for Billy Ray. His statement set the course of my thinking in many other decisions. He assured me Dr. Ron was very cautious about regular testing and could discontinue it quickly enough to minimize the risk.
In discussing risks, a longtime pediatrician once went over the risks of using plain aspirin as an example. If people realized all the risks of aspirin, no one would probably use it. It is such a common part of our culture that no one really thinks about the risks involved.
These, then, are questions we must ask about most decisions relative to our children who experience special needs:
- What is the risk involved in doing nothing?
- What is the risk involved with the treatment suggested?
- Is there anything that can be done to minimize the risk?
At that time, it appeared the risk of doing nothing meant placing Billy Ray in the state institution (now closed). It would clearly impact the quality of his life. The additional reality was that placed in that kind of setting, he would be medicated anyway. The risk would be minimized by regular blood tests and the medication stopped immediately.
We took the risk. Billy Ray stabilized for several years including the last five years of his father. It enabled him to have a very special time with his Dad. We have considered other medications over the years that the risk seemed just too much.
There are many other risks in life than what medication to use. For example, various support staff have questioned the degree of involvement we also Billy Ray to have in preparing meals. The stove is hot. He could get burned. So could you! So could I! Life is a risk we take each day we wake up. The alternative is risky too.
Billy Ray loves his service dog. If he is experiencing communication by behavior he is mostly likely to express it to someone he feels most secure with – Mom and service dog. The risk is always there that he will get a dog bite. We discussed the benefit of the dog and the risk with the pediatrician years ago. He has never been bitten but he has gained much benefit from having his dogs over the years.
While we should never assume risks haphazardly, it seems so important to always look at both sides including the risk of not doing anything.
Until next time,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
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