I recently wrote an article for Club Mom about the job of parenting a special needs child. It is not up on their site yet but I will post a link to my articles when they are up. It is definitely true that parenting a complex special needs child is a career in itself.
A post on the Mote Guardian Blog about parents going online to understand their children’s disabilities reminded me of something I shared in in Parenting Your Complex Child. It was taken from an email from Billy Ray’s former doctor who allowed me to use it but without his name.
“*** I would think the strength of your book would lie in it's being honest in presenting how frustrating the struggle has been and how much experts often don't know. You could describe yourself as an expert on experts, I guess!”
“Becoming “an expert on experts” is an undesirable title. The only way a parent becomes this is to have crisis after crisis taking the parent from one professional to another.” Excerpted by permission of the publisher from "Parenting Your Complex Child" by Peggy Lou Morgan © 2006 Peggy Lou Morgan, published by AMACOM, division of American Management Association, New York, New York.
When our children experience various maladies or challenges we have to become experts in areas we were never really aware of. Our education and career seems to center around learning what they need us to learn so that we can care for and advocate for our children.
Until next time,
Peggy Lou Morgan
Amazon Blog
Parenting Your Complex Child Yahoo Group
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Lighthouse Parents Blog
Thursday, July 13, 2006
Tuesday, July 11, 2006
An Inspiration - Man with Down Syndrome Turned Exercise Coach
I was surf around on the Net tonight and found this link to a story about a man with Down Syndrome who is a fitness coach to others who experience Down Syndrome and some other disabilities. It is such an inspiration I want to share it with you.
It is so important that we look to what our children can do more than what they can't and try to help them do what they love most.
Until next time,
Peggy Lou Morgan
Amazon Blog
Lighthouse Parents Blog
Parenting Your Complex Child Yahoo Group
www.parentingyourcomplexchild.com
http://www.lighthouseparents.com/
It is so important that we look to what our children can do more than what they can't and try to help them do what they love most.
Until next time,
Peggy Lou Morgan
Amazon Blog
Lighthouse Parents Blog
Parenting Your Complex Child Yahoo Group
www.parentingyourcomplexchild.com
http://www.lighthouseparents.com/
Monday, July 10, 2006
Setting Reasonable Boundaries
In an earlier post we discussed allowing our complex children and adults to experience life with its’ normal risks (such as a burn on the stove). Besides the risks we all experience in life there are boundaries we have to accept. Adults are not necessarily free to do everything they want to do despite being independent adults. With all that has happened with Billy Ray’s physical problems and other significant changes in his life (finishing his school eligibility, moving to a new community, hiring a new weekday support staff) we are having to think more about what is reasonable to allow Billy Ray to experience and to expect from him.
Billy Ray is testing boundaries long established in his life. There are probably several reasons for that. The structure in his life has been impacted by recurrent health problems and the significant changes noted above. It could also be that he is becoming more and more adult. As shared here, Billy Ray is demonstrating some higher functioning skills that he experienced prior to the seizures that changed his life 12 years ago.
Boundaries have to be looked at it terms of future planning as well as present living situations. There are things that will apply to both. However, if patterns are set at home it may be difficult for him to adjust if he had to be in a group setting, etc.
His present situation is that he lives with his Mom and stepfather with a support staff coming in during the weekdays to give Mom and “Dadgert” some break to do needed things. Dad and Mom alternate being his one to one support the rest of the day weekdays and all weekend. As I state in our staff manual, while this is effectively a residential treatment center for one, it is still a family home to three of us. Billy Ray doesn’t have free rein to go into our bedroom, my office, etc. and get into our things. We have a right to our boundaries too.
If he were to be in a group home or in apartment with a roommate, he would need to respect others’ boundaries too. Lately he has wanted to come out into the living room in nothing but his underwear. Part of this is because his beloved western jeans are not comfortable with his abdominal pain but we have comfortable sweats or even his bath wrap as an alternative for him during those periods. In a group home or other setting he wouldn’t be allowed to run around in his underwear. Additionally, it is inappropriate here because of visits from Larry’s granddaughters, etc. This is an example of thinking about a boundary both presently and in the future.
Present support staff has been with him just less than a year so is a bit unsure of prior boundaries. Billy Ray has been sick all of the time since he has worked here. Additionally, Billy Ray is coming out of the out of control he was demonstrating when staff was hired last August. Billy Ray was very much
The Explosive Child as in the wonderful book I am reading by Ross Greene. I think part of the reason for his explosions has been sudden onset of pain. He has never handled pain in the way many children do (crying for Mom to kiss it and make it better). He interprets pain as something that someone is doing to him and it makes him mad! Staff is understandably a little hesitant to invoke the explosiveness. We need to support staff in understanding how to enforce realistic boundaries.
Billy Ray is smart enough to play Mom v. Dad v. support staff game as I wrote about so he is going to test his limits for all they are worth. In a way, he feels more secure when limits are established because he knows how far he can go and no further. Thus, it becomes important for all parties working with a child to be on the same page and as consistent with the other as possible.
No matter where he lives there needs to be boundaries. Observing realistic ones now will help his future to be more successful.
Until next time,
Peggy Lou Morgan
Other Blogs: Amazon Blog and Lighthouse Parents Blog
Parenting Your Complex Child Yahoo Group
Websites: http://www.parentingyourcomplexchild.com/ and www.lighthouseparents.com
Billy Ray is testing boundaries long established in his life. There are probably several reasons for that. The structure in his life has been impacted by recurrent health problems and the significant changes noted above. It could also be that he is becoming more and more adult. As shared here, Billy Ray is demonstrating some higher functioning skills that he experienced prior to the seizures that changed his life 12 years ago.
Boundaries have to be looked at it terms of future planning as well as present living situations. There are things that will apply to both. However, if patterns are set at home it may be difficult for him to adjust if he had to be in a group setting, etc.
His present situation is that he lives with his Mom and stepfather with a support staff coming in during the weekdays to give Mom and “Dadgert” some break to do needed things. Dad and Mom alternate being his one to one support the rest of the day weekdays and all weekend. As I state in our staff manual, while this is effectively a residential treatment center for one, it is still a family home to three of us. Billy Ray doesn’t have free rein to go into our bedroom, my office, etc. and get into our things. We have a right to our boundaries too.
If he were to be in a group home or in apartment with a roommate, he would need to respect others’ boundaries too. Lately he has wanted to come out into the living room in nothing but his underwear. Part of this is because his beloved western jeans are not comfortable with his abdominal pain but we have comfortable sweats or even his bath wrap as an alternative for him during those periods. In a group home or other setting he wouldn’t be allowed to run around in his underwear. Additionally, it is inappropriate here because of visits from Larry’s granddaughters, etc. This is an example of thinking about a boundary both presently and in the future.
Present support staff has been with him just less than a year so is a bit unsure of prior boundaries. Billy Ray has been sick all of the time since he has worked here. Additionally, Billy Ray is coming out of the out of control he was demonstrating when staff was hired last August. Billy Ray was very much
The Explosive Child as in the wonderful book I am reading by Ross Greene. I think part of the reason for his explosions has been sudden onset of pain. He has never handled pain in the way many children do (crying for Mom to kiss it and make it better). He interprets pain as something that someone is doing to him and it makes him mad! Staff is understandably a little hesitant to invoke the explosiveness. We need to support staff in understanding how to enforce realistic boundaries.
Billy Ray is smart enough to play Mom v. Dad v. support staff game as I wrote about so he is going to test his limits for all they are worth. In a way, he feels more secure when limits are established because he knows how far he can go and no further. Thus, it becomes important for all parties working with a child to be on the same page and as consistent with the other as possible.
No matter where he lives there needs to be boundaries. Observing realistic ones now will help his future to be more successful.
Until next time,
Peggy Lou Morgan
Other Blogs: Amazon Blog and Lighthouse Parents Blog
Parenting Your Complex Child Yahoo Group
Websites: http://www.parentingyourcomplexchild.com/ and www.lighthouseparents.com
Thursday, July 6, 2006
Feeling a Little More Hopeful
Not a lot to share yet but since I am taking you with me on this journey to find the cause of Billy Ray's pain and seeming deteriorating health, I wanted to share that I am feeling more hopeful today.
Not only am I frustrated but the other members of the medical team are probably frustrated because we have tried so many things and nothing demonstrates why the issues continue. The team called in Dr. Rick Bochner from Bend Memorial Clinic.
Dr. Bochner saw Billy Ray in the hospital and again at his clinic yesterday. We went over the results of lab tests run while BR was in the hospital. I am relieved to find he does not have a sensitivity to glutten because that is something I feared. Billy Ray is a big bread fan and there is so much talk about glutten free diets I have asked to have him tested for it several times over years but it hasn't been done. This time Dr. Bochner honored my request and eased my mind considerably.
The thing I felt best about in the visit with Dr. Bochner, though the glutten thing was a big relief, was that Dr. Bochner said "I want to stay with it and find out what is making Billy hurt and fix it." That commitment is encouraging. That is especially true since the other two members of the team are equally committed and have gone far beyond what many providers might do.
Next on the agenda the wonderful colonoscopy on the 27th. I am so relieved that Dr. Bochner had his assistant work to schedule the colonoscopy when both he and Dr. Raudy will be available.
As shared before it is frightening when we have to call in an anesthesiologist because of his history on not being able to come off the ventilator. We met and immediately respected Dr. Todd Raudy when he sedated Billy Ray for a scope of the upper abdomen in April. I have met with many anaesthesiologist over the years not only for Billy Ray but for prior disabled clients. It is clear they understand their field well but none have communicated so much understanding of the specialized needs of disabled children and adults as Dr. Raudy did.
It is still onward and forward. Billy Ray is up and down but able to participate in his Meals on Wheels yesterday before his visit with Dr. Bockner and is now on his Thursday activities.
Until next time,
Peggy Lou Morgan
Websites: www.parentingyourcomplexchild.com and www.lighthouseparents.com
Blogs: Amazon Blog and Lighthouse Parents Blog
Not only am I frustrated but the other members of the medical team are probably frustrated because we have tried so many things and nothing demonstrates why the issues continue. The team called in Dr. Rick Bochner from Bend Memorial Clinic.
Dr. Bochner saw Billy Ray in the hospital and again at his clinic yesterday. We went over the results of lab tests run while BR was in the hospital. I am relieved to find he does not have a sensitivity to glutten because that is something I feared. Billy Ray is a big bread fan and there is so much talk about glutten free diets I have asked to have him tested for it several times over years but it hasn't been done. This time Dr. Bochner honored my request and eased my mind considerably.
The thing I felt best about in the visit with Dr. Bochner, though the glutten thing was a big relief, was that Dr. Bochner said "I want to stay with it and find out what is making Billy hurt and fix it." That commitment is encouraging. That is especially true since the other two members of the team are equally committed and have gone far beyond what many providers might do.
Next on the agenda the wonderful colonoscopy on the 27th. I am so relieved that Dr. Bochner had his assistant work to schedule the colonoscopy when both he and Dr. Raudy will be available.
As shared before it is frightening when we have to call in an anesthesiologist because of his history on not being able to come off the ventilator. We met and immediately respected Dr. Todd Raudy when he sedated Billy Ray for a scope of the upper abdomen in April. I have met with many anaesthesiologist over the years not only for Billy Ray but for prior disabled clients. It is clear they understand their field well but none have communicated so much understanding of the specialized needs of disabled children and adults as Dr. Raudy did.
It is still onward and forward. Billy Ray is up and down but able to participate in his Meals on Wheels yesterday before his visit with Dr. Bockner and is now on his Thursday activities.
Until next time,
Peggy Lou Morgan
Websites: www.parentingyourcomplexchild.com and www.lighthouseparents.com
Blogs: Amazon Blog and Lighthouse Parents Blog
Monday, July 3, 2006
Reading the Signs AGAIN...7/3/06
The weekend has been a bit up and down. Billy Ray has continued to have pain some of which may be caused by the medication for the yeast in his esophagus. Two of his medical providers have said that it could cause irritation and even stinging.
As in the past he has had severe pain sometimes with communication by behavior. Once the pain is treated with his meds, he is anxious to be busy at least for a short time. This weekend he went for short periods with his stepfather to our storage unit to help organize and remove what we can. It is just around the corner from us so when he is tired he can come home and go back later if he wants to.
The revised picture schedule for the week is now in draft. He seems to have more irritation during the week than on the weekend. At this point, I am trying to easedrop a bit to ascertain if he is having more pain, additional staff training would be helpful or the schedule needs more honing. It is a constant need to Read the Signs.
When there doesn’t seem to be any easy answers I tend to pull away as much as possible and try to seek guidance spiritually. That part of the journey is an important one but not necessarily what you expect to hear about when you come to this blog. I have created another blog that will specifically discuss the spiritual part of our journey. It is Lighthouse Parents Blog if you would care to visit.
Until next time,
Peggy Lou Morgan
Amazon Blog
Parenting Your Complex Child Yahoo Group
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Lighthouse Parents Blog
As in the past he has had severe pain sometimes with communication by behavior. Once the pain is treated with his meds, he is anxious to be busy at least for a short time. This weekend he went for short periods with his stepfather to our storage unit to help organize and remove what we can. It is just around the corner from us so when he is tired he can come home and go back later if he wants to.
The revised picture schedule for the week is now in draft. He seems to have more irritation during the week than on the weekend. At this point, I am trying to easedrop a bit to ascertain if he is having more pain, additional staff training would be helpful or the schedule needs more honing. It is a constant need to Read the Signs.
When there doesn’t seem to be any easy answers I tend to pull away as much as possible and try to seek guidance spiritually. That part of the journey is an important one but not necessarily what you expect to hear about when you come to this blog. I have created another blog that will specifically discuss the spiritual part of our journey. It is Lighthouse Parents Blog if you would care to visit.
Until next time,
Peggy Lou Morgan
Amazon Blog
Parenting Your Complex Child Yahoo Group
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Lighthouse Parents Blog
Reading the Signs AGAIN...7/3/06
The weekend has been a bit up and down. Billy Ray has continued to have pain some of which may be caused by the medication for the yeast in his esophagus. Two of his medical providers have said that it could cause irritation and even stinging.
As in the past he has had severe pain sometimes with communication by behavior. Once the pain is treated with his meds, he is anxious to be busy at least for a short time. This weekend he went for short periods with his stepfather to our storage unit to help organize and remove what we can. It is just around the corner from us so when he is tired he can come home and go back later if he wants to.
The revised picture schedule for the week is now in draft. He seems to have more irritation during the week than on the weekend. At this point, I am trying to easedrop a bit to ascertain if he is having more pain, additional staff training would be helpful or the schedule needs more honing. It is a constant need to Read the Signs.
When there doesn’t seem to be any easy answers I tend to pull away as much as possible and try to seek guidance spiritually. That part of the journey is an important one but not necessarily what you expect to hear about when you come to this blog. I have created another blog that will specifically discuss the spiritual part of our journey. It is Lighthouse Parents Blog if you would care to visit.
Until next time,
Peggy Lou Morgan
Amazon Blog
Parenting Your Complex Child Yahoo Group
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Lighthouse Parents Blog
As in the past he has had severe pain sometimes with communication by behavior. Once the pain is treated with his meds, he is anxious to be busy at least for a short time. This weekend he went for short periods with his stepfather to our storage unit to help organize and remove what we can. It is just around the corner from us so when he is tired he can come home and go back later if he wants to.
The revised picture schedule for the week is now in draft. He seems to have more irritation during the week than on the weekend. At this point, I am trying to easedrop a bit to ascertain if he is having more pain, additional staff training would be helpful or the schedule needs more honing. It is a constant need to Read the Signs.
When there doesn’t seem to be any easy answers I tend to pull away as much as possible and try to seek guidance spiritually. That part of the journey is an important one but not necessarily what you expect to hear about when you come to this blog. I have created another blog that will specifically discuss the spiritual part of our journey. It is Lighthouse Parents Blog if you would care to visit.
Until next time,
Peggy Lou Morgan
Amazon Blog
Parenting Your Complex Child Yahoo Group
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Lighthouse Parents Blog
Saturday, July 1, 2006
Keeping on, Keeping On..7/1/06
Billy Ray was discharged from the hospital about 3:30 p.m. on Thursday. I apologize for not writing that on here sooner because I got some wonderful notes from fellow bloggers worrying. It has been hetic. Billy Ray went into the local clinic Friday morning and the case manager came to the house soon thereafter to do a in-home support budget plan for the new year that had been rescheduled until it couldn’t be rescheduled any longer.
I started to write last night but was at a loss to know what to say. It seems like I complain about my frustration too much and that dispels the joy of being Billy Ray’s Mom that I want to convey because it is real. Do I tell you about a nurse who caused problems? Probably not, since there is only one hospital in our area. We might have to go back someday.
I would like to tell you that all is well and we fixed the problem. That is what you want to hear and what I want to believe. My gut says that’s not true. As shared previously Billy Ray was almost sent home from the emergency room in July 2005 with increased psychiatric medications because the ER doc said there was no medical reason for his pain. If advocacy had not convinced the doctor to order a cat scan he would probably have died because his appendix was already leaking bacteria into his abdomen in addition to other issues the surgeon found. My “gut” says we are in the same situation but it is not as simple this time. Billy Ray has a strong relationship with his primary provider and the surgeon and I know that they are doing everything they can to find whatever it is.
They did find that he has yeast in the esophagus but since that is believed to be caused from recent antibiotic treatments for his sinus infection I don’t think that is the answer to his months of pain
I lost my cool at the hospital. I haven’t done that much since I learned to advocate better but when I am afraid for Billy Ray and frustrated that no one is understanding his needs it is a real struggle. I was embarrassed for myself and others on the team who were probably effected.
I feel bad for the team, especially Brice Stanley, PA-C, who is surely as frustrated as I am at trying to find the answer. He has done everything that he could do and more than many would. I am so thankful that he is our family primary provider. It just seems that all the things going on with Billy Ray makes finding answers harder. One thing masks another.
A routine thing happened when he was admitted. I was asked to do a code status. While there was nothing terminal in his present situation, they had to have information about how to handle such things as his heart stopping. I did feel very good about discussing it with Brice and Dr. Masterangelo who have been involved in the team since the ventilator episode last year and felt that we came up with a reasonable plan for that event if it should occur in the future.
Basically we are going to continue to do everything we can to help Billy Ray to have the most quality life he can: the best medical care we can provide and the best activities and care we can provide at home and in the community. Hopefully helping him to have as many smiles like this as possible. However, we are not going the ventilator route again.
Having made that decision it felt peaceful that we were in agreement. However, that night when I couldn’t sleep at the hospital my mind raced to something I had read in Breakthrough Parenting for Children with Special Needs by Judy Winter. In the foreword to that book, Gail Williamson wrote about Judy Winter’s loss of her son: “I am sure the pain of losing a child is just as strong no matter what the child’s needs are. The difference, I believe, is that the void can be cavernous when a parent loses a child with special needs. All those daily activities immediately cease, and you are left alone with time – and time can become your enemy.”
Thinking about that I realize more fully as I have said so often that he is the music and the notes of my symphony, he is the music of my life. It makes me question whether I fear for him or for both of us. Without doubt, I fear his suffering and that is something I will fight with everyone ounce of strength I have. However, I have to admit since I believe that there are multiple types of healing: becoming well through great medical care or divine healing here on earth or in Heaven, the fear of losing him is more selfish. It terrifies me.
He has had a pain pill which helped and now is enjoying time with his stepfather. He gets relief and then wants to do things. We are going to do what we can to give him quality in each day and pray that somehow what seems to be hidden from the doctors will become clear and be fixable.
It has been a struggle to know how transparent to be with you here but seemed important to do so.
Until next time,
Peggy Lou Morgan
Amazon Blog
Parenting Your Complex Child Yahoo Group
www.parentingyourcomplexchild.com
www.lighthouseparents.com
I started to write last night but was at a loss to know what to say. It seems like I complain about my frustration too much and that dispels the joy of being Billy Ray’s Mom that I want to convey because it is real. Do I tell you about a nurse who caused problems? Probably not, since there is only one hospital in our area. We might have to go back someday.
I would like to tell you that all is well and we fixed the problem. That is what you want to hear and what I want to believe. My gut says that’s not true. As shared previously Billy Ray was almost sent home from the emergency room in July 2005 with increased psychiatric medications because the ER doc said there was no medical reason for his pain. If advocacy had not convinced the doctor to order a cat scan he would probably have died because his appendix was already leaking bacteria into his abdomen in addition to other issues the surgeon found. My “gut” says we are in the same situation but it is not as simple this time. Billy Ray has a strong relationship with his primary provider and the surgeon and I know that they are doing everything they can to find whatever it is.
They did find that he has yeast in the esophagus but since that is believed to be caused from recent antibiotic treatments for his sinus infection I don’t think that is the answer to his months of pain
I lost my cool at the hospital. I haven’t done that much since I learned to advocate better but when I am afraid for Billy Ray and frustrated that no one is understanding his needs it is a real struggle. I was embarrassed for myself and others on the team who were probably effected.
I feel bad for the team, especially Brice Stanley, PA-C, who is surely as frustrated as I am at trying to find the answer. He has done everything that he could do and more than many would. I am so thankful that he is our family primary provider. It just seems that all the things going on with Billy Ray makes finding answers harder. One thing masks another.
A routine thing happened when he was admitted. I was asked to do a code status. While there was nothing terminal in his present situation, they had to have information about how to handle such things as his heart stopping. I did feel very good about discussing it with Brice and Dr. Masterangelo who have been involved in the team since the ventilator episode last year and felt that we came up with a reasonable plan for that event if it should occur in the future.
Basically we are going to continue to do everything we can to help Billy Ray to have the most quality life he can: the best medical care we can provide and the best activities and care we can provide at home and in the community. Hopefully helping him to have as many smiles like this as possible. However, we are not going the ventilator route again.
Having made that decision it felt peaceful that we were in agreement. However, that night when I couldn’t sleep at the hospital my mind raced to something I had read in Breakthrough Parenting for Children with Special Needs by Judy Winter. In the foreword to that book, Gail Williamson wrote about Judy Winter’s loss of her son: “I am sure the pain of losing a child is just as strong no matter what the child’s needs are. The difference, I believe, is that the void can be cavernous when a parent loses a child with special needs. All those daily activities immediately cease, and you are left alone with time – and time can become your enemy.”
Thinking about that I realize more fully as I have said so often that he is the music and the notes of my symphony, he is the music of my life. It makes me question whether I fear for him or for both of us. Without doubt, I fear his suffering and that is something I will fight with everyone ounce of strength I have. However, I have to admit since I believe that there are multiple types of healing: becoming well through great medical care or divine healing here on earth or in Heaven, the fear of losing him is more selfish. It terrifies me.
He has had a pain pill which helped and now is enjoying time with his stepfather. He gets relief and then wants to do things. We are going to do what we can to give him quality in each day and pray that somehow what seems to be hidden from the doctors will become clear and be fixable.
It has been a struggle to know how transparent to be with you here but seemed important to do so.
Until next time,
Peggy Lou Morgan
Amazon Blog
Parenting Your Complex Child Yahoo Group
www.parentingyourcomplexchild.com
www.lighthouseparents.com
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