In a recent appearance on Good Morning Central Oregon, I heard myself use a term that I haven’t used before Professional Parent. In Parenting Your Complex Child I talked about working with professionals more as a professional to professional but never really used that term.
I have been thinking about it since then. It is possible that unknowing encourage the “dumb parent treatment” by walking into a setting with various professionals in awe of their expertise. We should respect their effort to gain expertise and expect respect for our expertise with our children.
Doctors and educators, for example, have education and experience working with children with special needs. However, they don’t have the same opportunity to know our children as we do. Our job as professional parent is communicate our child as he or she is to the professional.
Thus, in a real sense it is professional to professional not the parent in awe of the doctor, etc. Both roles have some important things to add. You as parent can give important information to the doctor about your child so they can use their expertise to the best advantage. When they know our child best, recommendations will be the most appropriate for the child.
In the course of a child’s life he or she will deal with many professionals. The longest lasting relationship will be with the parents. Thus, it is the most important role in a child’s life.
Until next time,
Peggy Lou Morgan
Amazon Blog
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Yahoo Group
Showing posts with label Parenting. Show all posts
Showing posts with label Parenting. Show all posts
Thursday, May 11, 2006
Tuesday, April 25, 2006
Comparing Notes - - Which Child is Harder
I was reading a message board last night where one parent was saying how much harder it was to handle her child with multiple physical problems than a child with ADHD or Autism. It is unfortunate that we have to compare our struggles rather than supporting each other.
Part of the problem is the difficulty of putting ourselves in the shoes of another parent because our children are so unique. For example, how does a parent who has multiple challenges with her child but doesn’t deal with sleep issues understand what the impact of living life sleep deprived for years on end.
I can see why a Mom who deals with the back pain and other issues from juggling a child to or from a wheelchair everyday to think that having a child with low functioning Autism might be easier. Unless she has experienced it will be difficult for that Mom to understand how hard it is when a child goes in meltdown while you are trying to get him or her to an important appointment.
There is no easy child with disabilities whatever the disability. We all have our challenges. Comparing notes doesn’t help.
Until next time,
Peggy Lou Morgan
Amazon Blog
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Yahoo Group
Part of the problem is the difficulty of putting ourselves in the shoes of another parent because our children are so unique. For example, how does a parent who has multiple challenges with her child but doesn’t deal with sleep issues understand what the impact of living life sleep deprived for years on end.
I can see why a Mom who deals with the back pain and other issues from juggling a child to or from a wheelchair everyday to think that having a child with low functioning Autism might be easier. Unless she has experienced it will be difficult for that Mom to understand how hard it is when a child goes in meltdown while you are trying to get him or her to an important appointment.
There is no easy child with disabilities whatever the disability. We all have our challenges. Comparing notes doesn’t help.
Until next time,
Peggy Lou Morgan
Amazon Blog
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Yahoo Group
Wednesday, April 19, 2006
Being the "Mean Mommie"
We can’t take Billy Ray to the restaurants on his schedule right now. For example, on Thursdays he goes to the LaPine Inn following his vocational activities. He also goes to Gordy’s Truck Stop and the Mexican Restaurant here (spacing the name this morning). He has established good relationships with these places and is welcomed even if he is not always calm and quiet.
When he was diagnosed with Diabetes we backed off for a bit but started taking him once or twice a week to the places mentioned. His blood sugar was stable and we were given permission by his medical provider to give him a couple of events, limiting sugar and fat to the degree possible and adding more medicine if necessary. It has had little impact on his blood sugar since we resumed doing that.
However, now with the pancreatitus almost everything he has at the various places has too much fat. I have to check on the Mexican food as I am not sure about the fat content in what he orders but Gordy’s and LaPine Inn are out for a while.
For example, the LaPine Inn makes homemade French fries that you would die for. Tim, the cook and Vicky the waitress do everything they can to accommodate his diet but their French fries are as they are. I talked to Billy Ray about having a veggie burger and salad but he is so resistant to the idea at home that we dare not take him. He is likely to go into a meltdown or worse because he can’t understand no French fries.
It is more than the food Billy Ray loves, but the relationships he has established. Billy Ray sees me as “mean Mommie” right now. Sometimes being a responsible Mom feels really bad.
Until next time,
Peggy Lou Morgan
Amazon Blog
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Yahoo Group
When he was diagnosed with Diabetes we backed off for a bit but started taking him once or twice a week to the places mentioned. His blood sugar was stable and we were given permission by his medical provider to give him a couple of events, limiting sugar and fat to the degree possible and adding more medicine if necessary. It has had little impact on his blood sugar since we resumed doing that.
However, now with the pancreatitus almost everything he has at the various places has too much fat. I have to check on the Mexican food as I am not sure about the fat content in what he orders but Gordy’s and LaPine Inn are out for a while.
For example, the LaPine Inn makes homemade French fries that you would die for. Tim, the cook and Vicky the waitress do everything they can to accommodate his diet but their French fries are as they are. I talked to Billy Ray about having a veggie burger and salad but he is so resistant to the idea at home that we dare not take him. He is likely to go into a meltdown or worse because he can’t understand no French fries.
It is more than the food Billy Ray loves, but the relationships he has established. Billy Ray sees me as “mean Mommie” right now. Sometimes being a responsible Mom feels really bad.
Until next time,
Peggy Lou Morgan
Amazon Blog
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Yahoo Group
Monday, April 10, 2006
Time to Practice What I Preach
First a chuckle of comic relief - for any authors reading this post beware of giving your medical provider a copy of your book because he may quote you back to you (smile) and how can you fight your own authority.
We are having a bit of rough time with Billy Ray. He was admitted to the hospital on Sunday. Now we know that he has pancreatitus which is something that we have explored thoroughly but could never verify until now. This brings up many concerns in my mind:
1) Will be able to reduce the fat in his diet enough to deal with it without a) reducing the quality of his life (since eating is his primary joy in life) and b) he might become to aggressive to handle at home if refused certain foods.
2) It is believed the antibiotics he needs for his skin infections is a major contributor to the present situation. I said to his wonderful surgeon that if we didn't treat the infections they could be fatal (as I have been taught for years) but he informed me that so can pancreatitius. A Catch 22.
3) The behavior medication that has worked more consistently and for longer periods of time than any other has to be removed because it is known to cause pancreatitius. I believe it needs to be done and am advocting for it but worry that we will find something else to work as well.
Brice called me at the hospital and pointed out several of my own methods in the past that are documented in the book. He is absolutely right. We can worry a bit but hopelessness is not where we can get stuck. We look where we are and what can we do. We review the documentation and pick ourselves up to keeping adapting and doing what we have to do.
For tonight I am weary but when we take him home tomorrow or the next day. We keep going and adapting until we work through it. We can do this.
Until next time,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Yahoo Group
We are having a bit of rough time with Billy Ray. He was admitted to the hospital on Sunday. Now we know that he has pancreatitus which is something that we have explored thoroughly but could never verify until now. This brings up many concerns in my mind:
1) Will be able to reduce the fat in his diet enough to deal with it without a) reducing the quality of his life (since eating is his primary joy in life) and b) he might become to aggressive to handle at home if refused certain foods.
2) It is believed the antibiotics he needs for his skin infections is a major contributor to the present situation. I said to his wonderful surgeon that if we didn't treat the infections they could be fatal (as I have been taught for years) but he informed me that so can pancreatitius. A Catch 22.
3) The behavior medication that has worked more consistently and for longer periods of time than any other has to be removed because it is known to cause pancreatitius. I believe it needs to be done and am advocting for it but worry that we will find something else to work as well.
Brice called me at the hospital and pointed out several of my own methods in the past that are documented in the book. He is absolutely right. We can worry a bit but hopelessness is not where we can get stuck. We look where we are and what can we do. We review the documentation and pick ourselves up to keeping adapting and doing what we have to do.
For tonight I am weary but when we take him home tomorrow or the next day. We keep going and adapting until we work through it. We can do this.
Until next time,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Yahoo Group
Friday, April 7, 2006
Searching for Balance
Balance is hard to find in parenting a complex child. The needs of our children, especially those with special needs, can be so strong we may not recognize the degree we fail to meet our own needs. I was reminded of that yesterday in an unusual way.
It seems that we parents are as unique as our children, in terms of how we will handle taking care of ourselves.
Billy Ray’s long time developmental pediatrician tried for years to teach me to take care of myself. She used to say “you can’t serve from an empty bucket”. This makes great sense upon hearing it but putting it into practice has always been difficult for me.
Somewhere in my numerous boxes of books still unpacked from our move, is a book called Main Stay. I apologize that I can’t remember the author but I remember the book so well. One example, that I remember so well was the author describing pushing her husband in a wheel chair and everyone saw him but didn’t seem to know she existed. Her medical issues were less visible and unseen.
It can be that way as parents of children with special needs. Whether we walk through the door pushing a wheelchair or holding the hand of our complex child, the child is the most noticeable. We are unseen except in the context of parent. It is easy to forget who we are people ourselves.
On other hand, I have read books or talked to parents who seem to do such a good job of taking care of themselves the child with disabilities seems second fiddle. The balancing act between the healthy attitude of taking care of yourself and taking care of your child seems to be elusive point many of us fail to find.
I remember reading once that the best thing a Dad can do for his child is to love his wife. It seems to fit that an important thing a parent can do for a complex child is to love yourself. If you don’t take care of yourself you will burn out and not be able to take care of your child.
Until next time,
Peggy Lou Morgan
Amazon Blog
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Yahoo Group
It seems that we parents are as unique as our children, in terms of how we will handle taking care of ourselves.
Billy Ray’s long time developmental pediatrician tried for years to teach me to take care of myself. She used to say “you can’t serve from an empty bucket”. This makes great sense upon hearing it but putting it into practice has always been difficult for me.
Somewhere in my numerous boxes of books still unpacked from our move, is a book called Main Stay. I apologize that I can’t remember the author but I remember the book so well. One example, that I remember so well was the author describing pushing her husband in a wheel chair and everyone saw him but didn’t seem to know she existed. Her medical issues were less visible and unseen.
It can be that way as parents of children with special needs. Whether we walk through the door pushing a wheelchair or holding the hand of our complex child, the child is the most noticeable. We are unseen except in the context of parent. It is easy to forget who we are people ourselves.
On other hand, I have read books or talked to parents who seem to do such a good job of taking care of themselves the child with disabilities seems second fiddle. The balancing act between the healthy attitude of taking care of yourself and taking care of your child seems to be elusive point many of us fail to find.
I remember reading once that the best thing a Dad can do for his child is to love his wife. It seems to fit that an important thing a parent can do for a complex child is to love yourself. If you don’t take care of yourself you will burn out and not be able to take care of your child.
Until next time,
Peggy Lou Morgan
Amazon Blog
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Yahoo Group
Tuesday, March 28, 2006
Thanks to Temple Grandin and Others Who Shared
It is another one of those mornings – the kind that used to totally freak me. Billy Ray has been yelling, bouncing and sometimes screaming for an hour. Sometimes it seems that my head sends off signals when I have a migraine and that stirs the reaction in Billy Ray (smile).
Yesterday I mentioned another mother’s reaction to her child’s noise in my Amazon blog. This morning listening to Billy Ray and trying to deal with my own headache I was thinking about the time when Billy Ray changed from a quieter child. As shared before, even the noise from an air conditioner or fan bothers me at times. Adjusting to the ear piercing sounds Billy Ray now makes has been an adjustment.
A search on Amazon this morning revealed 1,467 books for the key word Autism. That wasn’t the case when we first needed to learn about it. We found Temple Grandin, Ph.D. first in articles on Autism Research Institute’s website and then we found her books. I told Dr. Grandin that I felt like I had been educated in the school of Temple Grandin because it was the starting point in helping me to understand Billy Ray.
Eventually we found other writers who write about their own experience with Autism such as Sue Rubin and other writers who can share their personal experiences. The library on Autistics.org has multiple articles that are very helpful.
Billy Ray is not exactly like any of these writers but the insight they bring has helped me to get a glimpse into his thinking and needs. It has been the jumpstart we needed to get started adapting to Billy Ray.
This morning thinking about how much easier it is to tolerate Billy Ray’s noise and to work through it (figure out whether he needs something or just needs to get it out), I just felt like expressing appreciation to Dr. Grandin and all those who have shared.
Until next time,
Peggy Lou Morgan
Amazon Blog
http://www.parentingyourcomplexchild.com/
www.lighthouseparents.com
Yahoo Group
Yesterday I mentioned another mother’s reaction to her child’s noise in my Amazon blog. This morning listening to Billy Ray and trying to deal with my own headache I was thinking about the time when Billy Ray changed from a quieter child. As shared before, even the noise from an air conditioner or fan bothers me at times. Adjusting to the ear piercing sounds Billy Ray now makes has been an adjustment.
A search on Amazon this morning revealed 1,467 books for the key word Autism. That wasn’t the case when we first needed to learn about it. We found Temple Grandin, Ph.D. first in articles on Autism Research Institute’s website and then we found her books. I told Dr. Grandin that I felt like I had been educated in the school of Temple Grandin because it was the starting point in helping me to understand Billy Ray.
Eventually we found other writers who write about their own experience with Autism such as Sue Rubin and other writers who can share their personal experiences. The library on Autistics.org has multiple articles that are very helpful.
Billy Ray is not exactly like any of these writers but the insight they bring has helped me to get a glimpse into his thinking and needs. It has been the jumpstart we needed to get started adapting to Billy Ray.
This morning thinking about how much easier it is to tolerate Billy Ray’s noise and to work through it (figure out whether he needs something or just needs to get it out), I just felt like expressing appreciation to Dr. Grandin and all those who have shared.
Until next time,
Peggy Lou Morgan
Amazon Blog
http://www.parentingyourcomplexchild.com/
www.lighthouseparents.com
Yahoo Group
Friday, March 24, 2006
Life is What Happens..That You Didn't Plan
I am working on a post for Monday’s Amazon Blog on acceptance being a process. I don’t want to give away the post but I can’t resist sharing part of my mind’s ramblings with you today.
Billy Ray tends to have one movie at a time that he will watch over and over so I memorize them too (because I am in his bedroom while he watches as he goes to sleep). The one he is watching most right now is my old copy of Mr. Holland’s Opus with Richard Dreyfus. I loved that movie partly because it was filmed in Portland, Oregon, my hometown. Billy Ray loves it because of all the “oldies” songs and because he directs the orchestra with Richard Dreyfus (Mr. Holland).
In the movie Mr. Holland is singing the John Lennon song “Beautiful Boy” to his son. There is a line in the song that says “life is what happens to you, when you are busy making other plans.” I think that is true of most of parents of children with special needs.
Raymond and I did ask for a child with Down Syndrome when we adopted Billy Ray. Thus, I can’t say that his special needs were not a part of my “other plans.” However, I wasn’t prepared for him to experience ADHD, Bipolar and Autism. His experience of that has definitely changed our life. Had his experience been different I wouldn’t have had anything to share with you here or in my book.
I recently had some contact with Marty Omoto who shared how he went with his older sister as classroom assistant in her special education classes during junior and high school. Marty is now Director of California Disabilities Community Action Network. His sister’s experience surely had an impact on his career.
In her endorsement to my book Ruth Crist Sullivan, Ph.D. refers to her self as “parent-cum-professional”. Dr. Bernard Rimland, founder of the Autism Association of America and Director, Autism Research Institute is the father of Mark who experiences Autism. Charlie Fox, Special Ed Law Blogs, is the father of child with special needs and specializes his law practice on special education law.
I could give many more examples of people whose lives have been changed because of their relationship with someone who experiences special needs. Plans are changed and life takes on different meaning.
I can’t speak for anyone but myself. For me, being Billy Ray’s Mom has changed me to a profound degree.
Until next time,
Peggy Lou Morgan
Yahoo Group
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Amazon Blog
Billy Ray tends to have one movie at a time that he will watch over and over so I memorize them too (because I am in his bedroom while he watches as he goes to sleep). The one he is watching most right now is my old copy of Mr. Holland’s Opus with Richard Dreyfus. I loved that movie partly because it was filmed in Portland, Oregon, my hometown. Billy Ray loves it because of all the “oldies” songs and because he directs the orchestra with Richard Dreyfus (Mr. Holland).
In the movie Mr. Holland is singing the John Lennon song “Beautiful Boy” to his son. There is a line in the song that says “life is what happens to you, when you are busy making other plans.” I think that is true of most of parents of children with special needs.
Raymond and I did ask for a child with Down Syndrome when we adopted Billy Ray. Thus, I can’t say that his special needs were not a part of my “other plans.” However, I wasn’t prepared for him to experience ADHD, Bipolar and Autism. His experience of that has definitely changed our life. Had his experience been different I wouldn’t have had anything to share with you here or in my book.
I recently had some contact with Marty Omoto who shared how he went with his older sister as classroom assistant in her special education classes during junior and high school. Marty is now Director of California Disabilities Community Action Network. His sister’s experience surely had an impact on his career.
In her endorsement to my book Ruth Crist Sullivan, Ph.D. refers to her self as “parent-cum-professional”. Dr. Bernard Rimland, founder of the Autism Association of America and Director, Autism Research Institute is the father of Mark who experiences Autism. Charlie Fox, Special Ed Law Blogs, is the father of child with special needs and specializes his law practice on special education law.
I could give many more examples of people whose lives have been changed because of their relationship with someone who experiences special needs. Plans are changed and life takes on different meaning.
I can’t speak for anyone but myself. For me, being Billy Ray’s Mom has changed me to a profound degree.
Until next time,
Peggy Lou Morgan
Yahoo Group
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Amazon Blog
Wednesday, March 22, 2006
We are Family... Our Common Bond
Families who experience disabilities are not limited to our little rural community or even the metro areas of the United States. In her post My Favorite Blogs , Kristen (Mom to Mr. Handsome) writes:
“These are the current blogs that I try to read everyday. I guess you could say that they are the best support, outside of my family, for the world that I live in called motherhood and also the world of Autism. Thanks to all for their continued wisdom, incredible insight into each of your lives and beautiful stories about your children. I don't know what I would've done without all of you.”
I hear from parents in other parts of the world that they having some of the same struggles to get services for their child as we did for Billy Ray who is now an adult. It is a pleasure to have something to share that might make their struggle less than ours was.
In many ways our “family” of bloggers and internet buddies who may never actually meet each other understand more than our closest family members.
As I shared in my book, one of my favorite uncles came down on me pretty hard one day because he felt I sacrificed my life for Billy Ray. Not every family member can put themselves in our shoes and understand the choices we make for our children. They may see the sacrifice and not the joy we experience in little ways with our children.
Family is not just about DNA and common last names. We are family because we understand each other better than others could possibly understand.
Until next time,
Peggy Lou Morgan
Parenting Your Complex Child Yahoo Group
http://www.parentingyourcomplexchild.com/
www.lighthouseparents.com
Amazon Blog
“These are the current blogs that I try to read everyday. I guess you could say that they are the best support, outside of my family, for the world that I live in called motherhood and also the world of Autism. Thanks to all for their continued wisdom, incredible insight into each of your lives and beautiful stories about your children. I don't know what I would've done without all of you.”
I hear from parents in other parts of the world that they having some of the same struggles to get services for their child as we did for Billy Ray who is now an adult. It is a pleasure to have something to share that might make their struggle less than ours was.
In many ways our “family” of bloggers and internet buddies who may never actually meet each other understand more than our closest family members.
As I shared in my book, one of my favorite uncles came down on me pretty hard one day because he felt I sacrificed my life for Billy Ray. Not every family member can put themselves in our shoes and understand the choices we make for our children. They may see the sacrifice and not the joy we experience in little ways with our children.
Family is not just about DNA and common last names. We are family because we understand each other better than others could possibly understand.
Until next time,
Peggy Lou Morgan
Parenting Your Complex Child Yahoo Group
http://www.parentingyourcomplexchild.com/
www.lighthouseparents.com
Amazon Blog
Monday, March 13, 2006
The Hard Part - Deciding When to Worry
We create all kinds of visuals and cues to help our kids know what to expect and answer the question “what’s next”. If only, there was some system by which our kids could let us know what is coming next, especially with their health. For me the hardest part of being Billy Ray’s Mom is the “what’s next?” question that I have when it is clear his behavior is about some physical problem not his schedule or environment.
We have dealt with health issues since the day of his adoptive placement at 15 months old. However, it has been mostly things like ear infections and viral things. He has been blessed with reasonably good health until the last few years.
The documentation system in Parenting Your Complex Child was created mostly to help adapt to Billy Ray’s needs for schedules, environment, and advocating for his needs. It is becoming more important to his medical needs than expressed in my book. We had not experienced this many medical issues at the time I wrote it.
This weekend we had things occurring that could just be the flu. On the other hand, the medical folks have been sort of watching gallbladder since this summer when Billy Ray had surgery for appenditius. I am always left wondering if this is something routine (cold, flu) or should I call the clinic.
I am so thankful that we have Brice Stanley, PA-C, as Billy Ray’s medical provider, because he doesn’t treat me as a worry wart. I know that he will explain things to me and that he will be very thorough with checking things out.
My husband keeps saying what we need is a computer system to hook Billy Ray up to – like they do cars. Then the computer would tell us when Billy Ray can’t what is going on with him. Any inventors out there?
Until next time,
Peggy Lou Morgan
Parenting Your Complex Child YahooGroups List
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
We have dealt with health issues since the day of his adoptive placement at 15 months old. However, it has been mostly things like ear infections and viral things. He has been blessed with reasonably good health until the last few years.
The documentation system in Parenting Your Complex Child was created mostly to help adapt to Billy Ray’s needs for schedules, environment, and advocating for his needs. It is becoming more important to his medical needs than expressed in my book. We had not experienced this many medical issues at the time I wrote it.
This weekend we had things occurring that could just be the flu. On the other hand, the medical folks have been sort of watching gallbladder since this summer when Billy Ray had surgery for appenditius. I am always left wondering if this is something routine (cold, flu) or should I call the clinic.
I am so thankful that we have Brice Stanley, PA-C, as Billy Ray’s medical provider, because he doesn’t treat me as a worry wart. I know that he will explain things to me and that he will be very thorough with checking things out.
My husband keeps saying what we need is a computer system to hook Billy Ray up to – like they do cars. Then the computer would tell us when Billy Ray can’t what is going on with him. Any inventors out there?
Until next time,
Peggy Lou Morgan
Parenting Your Complex Child YahooGroups List
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Friday, March 10, 2006
Just for Today -- Idle Chit Chat
Just for today, I’m going to take care of me first. It’s hard for me to do that sometimes. Life tends to focus mostly on Billy Ray’s needs.
We have been in this area for over a year. There has been no plus-sized fashion shop. Today one of my favorite shops, Dress Barn, is opening in Bend (27 miles from us). I am going to allow myself to go shopping and to have lunch with my husband.
I am going to start with the best treat of all – a long soak in the tub. I tend to do that when Billy Ray is otherwise occupied which might not be that first thing in the morning that most people do. Not everyone could understand the joy of an uninterrupted bath. Those of you will have kids, whether special needs or not, probably do.
I am obsessing on the wonder of technology this morning. When I was writing Parenting Your Complex Child (AMACOM Books April 2006) I so longed to be able to interact with my readers. I would have never imagined that Amazon would have an ability to put a blog to talk to readers on their website. My publisher, AMACOM Books, let me know about it yesterday and I created one. Eventually it will be on the book detail page – once they confirm that I really wrote Parenting Your Complex Child.
Who would have dreamed that I could meet and learn from all of you too. If it wasn’t for my agent, William Brown , I would have never started the website and this blog. He is so smart about these technologies and I’m coming into the computer world (kicking and screaming at times) with total amazement.
Until next time,
Peggy Lou Morgan
Parenting Your Complex Child Yahoo Group
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
We have been in this area for over a year. There has been no plus-sized fashion shop. Today one of my favorite shops, Dress Barn, is opening in Bend (27 miles from us). I am going to allow myself to go shopping and to have lunch with my husband.
I am going to start with the best treat of all – a long soak in the tub. I tend to do that when Billy Ray is otherwise occupied which might not be that first thing in the morning that most people do. Not everyone could understand the joy of an uninterrupted bath. Those of you will have kids, whether special needs or not, probably do.
I am obsessing on the wonder of technology this morning. When I was writing Parenting Your Complex Child (AMACOM Books April 2006) I so longed to be able to interact with my readers. I would have never imagined that Amazon would have an ability to put a blog to talk to readers on their website. My publisher, AMACOM Books, let me know about it yesterday and I created one. Eventually it will be on the book detail page – once they confirm that I really wrote Parenting Your Complex Child.
Who would have dreamed that I could meet and learn from all of you too. If it wasn’t for my agent, William Brown , I would have never started the website and this blog. He is so smart about these technologies and I’m coming into the computer world (kicking and screaming at times) with total amazement.
Until next time,
Peggy Lou Morgan
Parenting Your Complex Child Yahoo Group
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/
Friday, February 24, 2006
No T.G.I.F. for Parents with Complex Children
This morning I realized that T.G.I.F. (Thank God It’s Friday) no longer holds the same meaning for me. We just came from the clinic where Billy Ray had lab work. I heard some folks saying T.G.I.F. I mused to myself that for me it is more like O.N.I.F. (Oh No It’s Friday).
We have help with Billy Ray weekdays. The transition from having another person doing the routine things like brushing teeth and assisting with his bath or taking him for community activities is confusing to Billy Ray. Each weekend we are asked “where’s Ronnie” about every five minutes. He cannot accept “it’s his day off”.
I enjoy having Billy Ray to myself on the weekends but they can be a bit exhausting. If he is having a difficult time I am ready for T.G.I.M. (Thank God it’s Monday) when Ron returns to spell me for a few hours each day.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
We have help with Billy Ray weekdays. The transition from having another person doing the routine things like brushing teeth and assisting with his bath or taking him for community activities is confusing to Billy Ray. Each weekend we are asked “where’s Ronnie” about every five minutes. He cannot accept “it’s his day off”.
I enjoy having Billy Ray to myself on the weekends but they can be a bit exhausting. If he is having a difficult time I am ready for T.G.I.M. (Thank God it’s Monday) when Ron returns to spell me for a few hours each day.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Thursday, February 23, 2006
Life Issues Beyond Our Complex Child
Thanks for the email from my fellow bloggers and blog readers that worried because I didn’t do a blog yesterday that something is wrong with Billy Ray. It was just one of those busy days yesterday.
Yesterday we met with the psychiatrist for medication review. Then I went to meet with the local Arc Chapter President who also runs a residential program about 27 miles from us. I walked out of there with the sense of meeting a kindred spirit, which is always wonderful. We then made a Costco trip for all the special things we have to replenish for Billy Ray constantly.
We can get so hung up on the care and needs of our complex child that we sometimes forget life goes on for our extended family and friends too. We got three different pieces of bad news from both sides of our family.
It is difficult to support others while trying to survive our day-to-day experiences but it must be done. Despite our efforts to keep everything running smoothly for Billy Ray there are times we must expect him to co-operate with the need for us to be there for others we care about.
We had just sat down for dinner, which was late because of our day yesterday, when a call came in from one of my stepsons about his wife’s new cancer diagnosis. I anticipated that Billy Ray might get upset. My first thought was to say I would call back. Then the thought crossed my mind that Mark is just as important as Billy Ray. If he got upset, we would deal with that. Billy Ray was amazingly calm as I talked to his brother.
Since he is often preoccupied with his own needs we expect Billy Ray to be insensitive. He is not. Obviously, we do not give him details he can’t understand. However, he was quite accepting of our reminder that Larry is Mark’s Daddy too and sometimes Mark needs his Daddy and stepmother.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Yesterday we met with the psychiatrist for medication review. Then I went to meet with the local Arc Chapter President who also runs a residential program about 27 miles from us. I walked out of there with the sense of meeting a kindred spirit, which is always wonderful. We then made a Costco trip for all the special things we have to replenish for Billy Ray constantly.
We can get so hung up on the care and needs of our complex child that we sometimes forget life goes on for our extended family and friends too. We got three different pieces of bad news from both sides of our family.
It is difficult to support others while trying to survive our day-to-day experiences but it must be done. Despite our efforts to keep everything running smoothly for Billy Ray there are times we must expect him to co-operate with the need for us to be there for others we care about.
We had just sat down for dinner, which was late because of our day yesterday, when a call came in from one of my stepsons about his wife’s new cancer diagnosis. I anticipated that Billy Ray might get upset. My first thought was to say I would call back. Then the thought crossed my mind that Mark is just as important as Billy Ray. If he got upset, we would deal with that. Billy Ray was amazingly calm as I talked to his brother.
Since he is often preoccupied with his own needs we expect Billy Ray to be insensitive. He is not. Obviously, we do not give him details he can’t understand. However, he was quite accepting of our reminder that Larry is Mark’s Daddy too and sometimes Mark needs his Daddy and stepmother.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Saturday, February 18, 2006
Joy and Satisfaction, Sadness and Frustration
Life with a child or adult who experiences some form of special needs is one of extremes – joy and satisfaction, sadness and frustration. I understand why many see it as a tragedy because I used to feel that way. There was hopelessness of wondering what each new day would bring and being afraid to get up (as if there was a choice when my son wakes raring to go at various stages of moonlight and sunrise). Other nights when tucking Billy Ray in bed and having him say “I luv you Mommie” in the most precious little voice there is a sense of “okay this is going to work”.
In the post Autism the Other Member of the Family, Kristen refers to the "bottom of the barrel feeling", that nameless panic that comes over you all day long.” We have experienced years of that “bottom of the barrel feeling” with Billy Ray partially because he is so complicated that most of the professionals involved with him were as frustrated at trying to help him. I remember screaming “is there any hope for Billy Ray” from the back deck of our former house in the middle of the day when no one was home but me. It must have been really loud because I could hear deer running down the back hill.
Reading book after book that said do this or do that for Austim or ADHD or Down Syndrome or Bipolar (none of it worked for Billy Ray who has been labeled with all those diagnoses) began to make me more angry.
A combination of factors including returning to my faith, stubbornness, anger, and probably my infertility issues created a person that never existed in me before. Giving up was not an acceptable option to me. In that stubbornness I made a lot of foolish mistakes eventually starting all over again to find out what would work for Billy Ray and me. That process is shared in Parenting Your Complex Child, this blog and my websites.
Life has become one of reading signs and evaluating communication by behavior . We found out a lot about what was causing Billy Ray’s frustration with his life and changed everything that we could. This reduced his behavior. The sense of satisfaction at making a difference in Billy Ray’s life is as extreme as the “bottom of the barrel feeling”.
We are not allowed to stay at the elation of making things better for long. Something new has a way of creeeping up without warning. Communication by behavior is now primarily because of his changing medical issues. That doesn’t make it less frustrating to deal with.
Changing what we can, accepting what we can’t fix and praying for wisdom will likely be a part of our lives as long as Billy Ray and I are together. We probably will never be “fixed” but we sure are better and that is satisfying beyond description.
Until Monday,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
In the post Autism the Other Member of the Family, Kristen refers to the "bottom of the barrel feeling", that nameless panic that comes over you all day long.” We have experienced years of that “bottom of the barrel feeling” with Billy Ray partially because he is so complicated that most of the professionals involved with him were as frustrated at trying to help him. I remember screaming “is there any hope for Billy Ray” from the back deck of our former house in the middle of the day when no one was home but me. It must have been really loud because I could hear deer running down the back hill.
Reading book after book that said do this or do that for Austim or ADHD or Down Syndrome or Bipolar (none of it worked for Billy Ray who has been labeled with all those diagnoses) began to make me more angry.
A combination of factors including returning to my faith, stubbornness, anger, and probably my infertility issues created a person that never existed in me before. Giving up was not an acceptable option to me. In that stubbornness I made a lot of foolish mistakes eventually starting all over again to find out what would work for Billy Ray and me. That process is shared in Parenting Your Complex Child, this blog and my websites.
Life has become one of reading signs and evaluating communication by behavior . We found out a lot about what was causing Billy Ray’s frustration with his life and changed everything that we could. This reduced his behavior. The sense of satisfaction at making a difference in Billy Ray’s life is as extreme as the “bottom of the barrel feeling”.
We are not allowed to stay at the elation of making things better for long. Something new has a way of creeeping up without warning. Communication by behavior is now primarily because of his changing medical issues. That doesn’t make it less frustrating to deal with.
Changing what we can, accepting what we can’t fix and praying for wisdom will likely be a part of our lives as long as Billy Ray and I are together. We probably will never be “fixed” but we sure are better and that is satisfying beyond description.
Until Monday,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Wednesday, February 8, 2006
Ramblings of a Sleep Deprived Mom
It’s morning although somehow it doesn’t feel like it. Billy Ray was awake briefly at 11 p.m. and several other points where I was up with him briefly. At 4 a.m. he came into my bed for a while and then went back to sleep for a couple more hours.
It occurs to me that when I write blog posts after nights like this I need to put a warning: “Content written while sleep deprived”. Then in my goofy, sleepy mood I am thinking we need bumper stickers than say “under the influence of a complex child”. However, I am not sure anyone but another parent of a complex special needs child would understand what that means.
Last night while I was waiting for Billy Ray to go to sleep I was composing a letter to a media a person I hope will consider helping bringing to light the life of complex special needs children. In Autism in the News we said that much of the media coverage is about High Functioning Autism and other higher functioning disabilities.
It seems important to help society as a whole get a glimpse into our experience not so that they will feel sorry for us. Understanding will go a long ways to change acceptance in the community and maybe even remove change of the governmental illogics I talked about in yesterday’s post.
Domestic abuse in spouses and child abuse is understood more because we have heard about trials in the media and had movies made about it. Very few people understand what it feels like when your child or sibling beats you up because they are confused or agitated. We hear about parents of disabled persons who murder their children without enough detail to hopefully prevent future occurrences of such cases.
While watching several of the clips from the funeral of Coretta King yesterday it occurred to me we need leaders such as the Kings who will fight to bring to light the needs of our children to the those who can change conditions. Lawmakers have made steps to change laws to benefit our children but they can’t regulate community acceptance.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
It occurs to me that when I write blog posts after nights like this I need to put a warning: “Content written while sleep deprived”. Then in my goofy, sleepy mood I am thinking we need bumper stickers than say “under the influence of a complex child”. However, I am not sure anyone but another parent of a complex special needs child would understand what that means.
Last night while I was waiting for Billy Ray to go to sleep I was composing a letter to a media a person I hope will consider helping bringing to light the life of complex special needs children. In Autism in the News we said that much of the media coverage is about High Functioning Autism and other higher functioning disabilities.
It seems important to help society as a whole get a glimpse into our experience not so that they will feel sorry for us. Understanding will go a long ways to change acceptance in the community and maybe even remove change of the governmental illogics I talked about in yesterday’s post.
Domestic abuse in spouses and child abuse is understood more because we have heard about trials in the media and had movies made about it. Very few people understand what it feels like when your child or sibling beats you up because they are confused or agitated. We hear about parents of disabled persons who murder their children without enough detail to hopefully prevent future occurrences of such cases.
While watching several of the clips from the funeral of Coretta King yesterday it occurred to me we need leaders such as the Kings who will fight to bring to light the needs of our children to the those who can change conditions. Lawmakers have made steps to change laws to benefit our children but they can’t regulate community acceptance.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Thursday, January 26, 2006
The Job of Parenting a Complex Special Needs Child
The other day bank teller apologized because another teller needing help interrupted her. I told her I was the mother of a complex special needs child so I understood multi-tasking. Funny how little tidbits of conversation stay on your mind for days. For days since then I have been thinking about the multi-tasking we do as parents of complex children.
This morning as I was walking through the living room there was a television interview on with a doctor about a book he wrote on marriage. In all fairness I have to say I am pulling this totally out of context because I heard very little of the interview. He was saying that you have to treat it like your job and apply the same level of effort to making marriage work.
It is the same way for parents of complex special needs children. We can’t relax and enjoy our children as much as we would like. We have to develop understanding of the education process, a variety of medical conditions, medication side effects and governmental programs. Then we have to figure how to present our child’s needs just as someone giving a presentation.
We become the lobbyist (advocate), the secretary, interpreter and caregiver not to mention breadwinner, chief cook, and bottle washer.
Applying business principles to our multi faceted job of raising our children does help get respect and results for our complex children. I will talk more about this in coming blog posts and in Parenting Your Complex Child.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
This morning as I was walking through the living room there was a television interview on with a doctor about a book he wrote on marriage. In all fairness I have to say I am pulling this totally out of context because I heard very little of the interview. He was saying that you have to treat it like your job and apply the same level of effort to making marriage work.
It is the same way for parents of complex special needs children. We can’t relax and enjoy our children as much as we would like. We have to develop understanding of the education process, a variety of medical conditions, medication side effects and governmental programs. Then we have to figure how to present our child’s needs just as someone giving a presentation.
We become the lobbyist (advocate), the secretary, interpreter and caregiver not to mention breadwinner, chief cook, and bottle washer.
Applying business principles to our multi faceted job of raising our children does help get respect and results for our complex children. I will talk more about this in coming blog posts and in Parenting Your Complex Child.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
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/
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/
Tuesday, January 17, 2006
If Mom Says No Ask Dad or Support Staff
You know the old adage “if Mom says no ask Dad”. Billy Ray uses the same adage on support staff. If Mom says no ask staff.
In Billy Ray and His Clothes Obsession I shared how difficult it is to get Billy Ray to switch from ill fitting clothes to new ones. He wants the new ones at the store and wants them in his closet but is unwilling to trade them for ones that are worn out or don’t fit anymore. This weekend when I was with Billy Ray, he wanted the “bulldoggey” jeans, which have popped two buttons off the waist (there is no point to sew another one on since they no longer meet) and the zipper, will not close all the way. They are plain too small for him.
This weekend I took a few punches from Billy Ray over his frustration and confusion that the jeans no longer fits and finally was able to help him see that he needed the bigger jeans because he is a big man now. You can imagine my reaction yesterday when Billy Ray came out of his room stuffed into his “bulldoggey” jeans. Staff said “that’s what he wanted”. That means we will have to deal with it all over again.
I told staff yesterday morning when he came in that I had worked through the jean situation with BR and it was written in the journal from the weekend. Apparently I needed to say don’t let Billy Ray put those jeans on.
It is very important to assure that all parties working with your complex child stay consistent with whatever you are trying to accomplish. Discuss your plans or methods with everyone involved with your child and assure consistency will be there.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
In Billy Ray and His Clothes Obsession I shared how difficult it is to get Billy Ray to switch from ill fitting clothes to new ones. He wants the new ones at the store and wants them in his closet but is unwilling to trade them for ones that are worn out or don’t fit anymore. This weekend when I was with Billy Ray, he wanted the “bulldoggey” jeans, which have popped two buttons off the waist (there is no point to sew another one on since they no longer meet) and the zipper, will not close all the way. They are plain too small for him.
This weekend I took a few punches from Billy Ray over his frustration and confusion that the jeans no longer fits and finally was able to help him see that he needed the bigger jeans because he is a big man now. You can imagine my reaction yesterday when Billy Ray came out of his room stuffed into his “bulldoggey” jeans. Staff said “that’s what he wanted”. That means we will have to deal with it all over again.
I told staff yesterday morning when he came in that I had worked through the jean situation with BR and it was written in the journal from the weekend. Apparently I needed to say don’t let Billy Ray put those jeans on.
It is very important to assure that all parties working with your complex child stay consistent with whatever you are trying to accomplish. Discuss your plans or methods with everyone involved with your child and assure consistency will be there.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Saturday, January 14, 2006
Billy Ray's Law
We all know about Murphy’s law. In our house we live by Billy Ray’s law which does have some points that are similar to Murphy’s law.
This seemed like a good idea to laugh a bit with you and I had lots more to write until, of course, I was finally able to sit down at the computer (we don’t have a Saturday support staff right now). You get the idea. Probably there is law according to your child too. Share them with all of us even if it is only for comic relief.
Off today's topic but I just have to share my excitement with you. Remember how excited I was because we discovered Walmart has Parenting Your Complex Child available for reorder. This week my husband discovered that Powell’s Books in Portland, Oregon (my hometown) has it for preorder. I have spent hours in that bookstore. To know that they are carrying it is like going home.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
- The earliest day of the week that Billy Ray gets up is the only day of the week that Mom can sleep in and he will be raring to go.
- If he keeps Mom up most of the night he is most likely to take a nap when Mom can’t take one.
- He is quiet until the phone rings.
- He is the most noisy during the most important telephone calls.
- Clothes never wear out no matter how many times he walks on the too long legs (because he won’t let Mom cut off and hem).
- No matter how much weight he gains his clothes will always fit.
- Everyone is put on this earth to meet his needs and no one has needs of their own.
- Support staff don’t need a day.
- The world waits for him. Stores never close.
- Stores will always have the same style he wants in his size everytime he goes into the store and wants them.
- We will never run out of his favorite foods no matter how much he eats.
This seemed like a good idea to laugh a bit with you and I had lots more to write until, of course, I was finally able to sit down at the computer (we don’t have a Saturday support staff right now). You get the idea. Probably there is law according to your child too. Share them with all of us even if it is only for comic relief.
Off today's topic but I just have to share my excitement with you. Remember how excited I was because we discovered Walmart has Parenting Your Complex Child available for reorder. This week my husband discovered that Powell’s Books in Portland, Oregon (my hometown) has it for preorder. I have spent hours in that bookstore. To know that they are carrying it is like going home.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Subscribe to:
Posts (Atom)
