In reading Matchbox Kid this morning KC’s Mom was very excited about KC’s attempt to make sounds. It was fun to remember when Billy Ray was reaching developmental milestones. His deceased father, Raymond, used to say that because our special needs kids have to work so hard for each step they bring so more joy.
Raymond frequently compared his daughter from a prior marriage, Cathy, to Billy Ray’s developmental milestones. He said that when Cathy was little she crawled up on the bed and worked until she taught herself to tie her shoes. She just determined to do it and stayed with it. As he watched Billy Ray, Raymond realized he had taken Cathy’s milestones too lightly because they seemed to come easily to her.
All of us have small and large successes. Last night my stepson called me that my granddaughter, Elora, was torn up because she was selected for a track meet on the same day as my first book signing and presentation . Her selection to participate in this event is a great honor because they are only taking the best from her team. When I called her I told her that her track success in the track meet was just as important as my book signing. We agreed that while we couldn’t be there for each other we would think of the other and share when the events are finished.
It is so easy to stay focused on the next milestone for our kids that we forget to enjoy the present one or to recognize that others in the family are having things to celebrate too.
So here’s to you, KC and to you Elora.
Until next time,
Peggy Lou Morgan
Amazon Blog
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Yahoo Group
Saturday, April 8, 2006
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
Thursday, April 6, 2006
The Peace from Trust in Medical Providers
Another realization about the importance of the doctor-parent relationship came with Billy Ray’s medical procedure yesterday. I have written about Brice Stanley, PA-C and Dr. Michael Masterangelo, the surgeon who saved Billy Ray’s life last summer. See an earlier discussion about the benefit of parent-doctor relationships here .
The medical procedure yesterday involved putting a scope down Billy Ray’s throat to ascertain why he is choking more and more seriously lately. I was not particularly worried about that. He has been sedated for many procedures with no problems. However, I am terrified that he will ever have to have general sedation with use of the ventilator because of the incident last summer where he was not able to resume normal breathing and was on the ventilator for nine days following surgery.
On Tuesday, the hospital called to say there had been a change of plans and Billy Ray was going to have general sedation which can mean the ventilator. I panicked for a bit and called Dr. Masterangelo’s office. Almost immediately, I felt stupid because I realized how confident I am in “Dr. Mike” (as Billy Ray calls him).
There are risks involved in medical care of all kinds. It seems heightened for complex special needs children. Risks are frightening but not totally avoidable. Additionally, mistakes do occur in medicine as in any other profession. The news is full of information on mistakes made by medical providers. All of that increases our fear as parents.
In that momentary panic two things became instantly clear: 1) The risk of Billy Ray continuing to choke was great and reduces the quality of his life by taking the joy away from eating. 2) Dr. Masterangelo knows Billy Ray very well, is a highly competent surgeon and I trust him to do everything he can to mitigate risks.
The Anesthesiologist Dr. Masterangelo had chosen was wonderful and seemed to have more of an understanding of Down syndrome than we have experienced at times. He did not use the ventilator and the procedure went very well. It was a comforting experience for Billy Ray and for me to just trust the team. Had I continued to panic instead of relaxing in the confidence that Dr. Masterangelo would do everything to keep Billy Ray as safe as possible, Billy Ray would have picked up on my panic and it could have been a horrible time for all. Instead he relaxed too and did great.
When we have done all that we can to have a relationship with the medical professionals for our child and feel confident in his or her understanding and care for the child, we have to relax in that confidence. An incredible comfort comes with that acceptance and trust. I am so thankful to have that peace with the medical providers in Billy Ray’s life.
Until next time,
Peggy Lou Morgan
Amazon Blog
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Yahoo Group
The medical procedure yesterday involved putting a scope down Billy Ray’s throat to ascertain why he is choking more and more seriously lately. I was not particularly worried about that. He has been sedated for many procedures with no problems. However, I am terrified that he will ever have to have general sedation with use of the ventilator because of the incident last summer where he was not able to resume normal breathing and was on the ventilator for nine days following surgery.
On Tuesday, the hospital called to say there had been a change of plans and Billy Ray was going to have general sedation which can mean the ventilator. I panicked for a bit and called Dr. Masterangelo’s office. Almost immediately, I felt stupid because I realized how confident I am in “Dr. Mike” (as Billy Ray calls him).
There are risks involved in medical care of all kinds. It seems heightened for complex special needs children. Risks are frightening but not totally avoidable. Additionally, mistakes do occur in medicine as in any other profession. The news is full of information on mistakes made by medical providers. All of that increases our fear as parents.
In that momentary panic two things became instantly clear: 1) The risk of Billy Ray continuing to choke was great and reduces the quality of his life by taking the joy away from eating. 2) Dr. Masterangelo knows Billy Ray very well, is a highly competent surgeon and I trust him to do everything he can to mitigate risks.
The Anesthesiologist Dr. Masterangelo had chosen was wonderful and seemed to have more of an understanding of Down syndrome than we have experienced at times. He did not use the ventilator and the procedure went very well. It was a comforting experience for Billy Ray and for me to just trust the team. Had I continued to panic instead of relaxing in the confidence that Dr. Masterangelo would do everything to keep Billy Ray as safe as possible, Billy Ray would have picked up on my panic and it could have been a horrible time for all. Instead he relaxed too and did great.
When we have done all that we can to have a relationship with the medical professionals for our child and feel confident in his or her understanding and care for the child, we have to relax in that confidence. An incredible comfort comes with that acceptance and trust. I am so thankful to have that peace with the medical providers in Billy Ray’s life.
Until next time,
Peggy Lou Morgan
Amazon Blog
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Yahoo Group
Wednesday, April 5, 2006
Billy Ray's Home from his Procedure
We are home from Billy Ray’s procedure today. It went well with no complications with the sedation. The surgeon did find several areas of that he biopsied. Biopsy report should be back mid next week.
He needs to see an Ear, Nose and Throat specialist to check on nodules in his throat for possible surgery. He found significant scar tissue in several other areas and biopsied probably 4-5 areas. He found what thinks is bacteria so is testing to see what that is.Bottom line is he found several reasons for the pain BR is experiencing (causing the "communication by behavior"). They have tried numerous tests such as MRI's and Catscans and couldn't find it but it has continued. Hopefully they will be able to isolate and treat it now.
Thanks for the comments and email. We are home. I am off to take a nap while we still have support staff and will write more tomorrow.
Until next time,
Peggy Lou Morgan
He needs to see an Ear, Nose and Throat specialist to check on nodules in his throat for possible surgery. He found significant scar tissue in several other areas and biopsied probably 4-5 areas. He found what thinks is bacteria so is testing to see what that is.Bottom line is he found several reasons for the pain BR is experiencing (causing the "communication by behavior"). They have tried numerous tests such as MRI's and Catscans and couldn't find it but it has continued. Hopefully they will be able to isolate and treat it now.
Thanks for the comments and email. We are home. I am off to take a nap while we still have support staff and will write more tomorrow.
Until next time,
Peggy Lou Morgan
Tuesday, April 4, 2006
What We're Doing
Billy Ray's favorite question is "what ya doing". I am going to answer that question for you, my blogger buddies, incase I miss a few days posts.
Billy Ray is having a medical procedure tomorrow. They are going to put a scope down his throat to see why he is having increased choking. It is planned for day surgery. Billy Ray does have a history of problems with sedation so there is always risk but we have a great surgeon.
He could have a sore throat and need a little extra care so I may not write for a day or two after his procedure.
Additionally, we are very busy preparing for some traveling and speaking. I am finding it a hard to keep up everyday with the blogs. When I don’t write my blogger buddies email me worried that something is wrong with Billy Ray. I will write most days but please don’t assume if I miss a day something is wrong.
The other thing that we are doing is getting forms put on the website that didn’t fit in the book or blank ones for you to download. It is taking more time that we anticipated. I will let you know when they are up.
Until next time,
Peggy Lou Morgan
Billy Ray is having a medical procedure tomorrow. They are going to put a scope down his throat to see why he is having increased choking. It is planned for day surgery. Billy Ray does have a history of problems with sedation so there is always risk but we have a great surgeon.
He could have a sore throat and need a little extra care so I may not write for a day or two after his procedure.
Additionally, we are very busy preparing for some traveling and speaking. I am finding it a hard to keep up everyday with the blogs. When I don’t write my blogger buddies email me worried that something is wrong with Billy Ray. I will write most days but please don’t assume if I miss a day something is wrong.
The other thing that we are doing is getting forms put on the website that didn’t fit in the book or blank ones for you to download. It is taking more time that we anticipated. I will let you know when they are up.
Until next time,
Peggy Lou Morgan
Monday, April 3, 2006
Creating a Plan for Dealing with a Disaster
I shared a glimpse into my fear of being unprepared. This was probably intensified by years of having both a terminally ill husband and a complex special needs child. Raymond, Billy Ray’s deceased Dad, could be in emergency with a collapsed lung or some infection without warning. If I was behind on laundry, etc. that was a problem for Billy Ray who had issues with incontinence at that time Trips to the Emergency Room are discussed here . We also talked about anticipating your child’s stressors for example when the furnace goes out or weather problems occur.
In the media coverage of Hurricane Katrina, I remember thinking Billy Ray would never be able to handle the shelter situations pictured. It has haunted me for more months. That fear was intensified by the “breaking news” alert that keep coming into my inbox about terrorist threats and unrest in the world.
Whether from terrorist or natural disasters it seems vital that we come up with a realization plan for caring for our special needs children in emergencies. I did a search on Google for emergency preparations. There were multiple good articles with the concept. Hurricane Tips: Special Needs and Elderly is a very good guide to get your thinking started regarding preparation.
That having been said there is some adapting to preparation suggestions that would need to be adapted to Billy Ray. The first thing that stood out when reviewing the suggestions was their suggestion for having one month’s medications in a safe location where you could go to in the event of crisis. Depending on your medication insurance or state health plan the idea that you could accumulate that much extra medications is probably unlikely. For example, we are only able to fill Billy Ray’s medication 3 days before it runs out. You could begin saving a pill or two at a time but it would be difficult to accumulate 30 days a supply. Shooting for a goal of a week’s medications might be more doable.
I am in the process of creating a simple form to anticipate what Billy Ray would need. When I do that I will put it on my website and will let you know when it’s up.
It seems important to be prepared. At the same when day to day struggles are like they are for many of us it will be difficult to prepare. Even baby steps to prepare will make a difference in how well our children will adapt in such a disaster.
Until next time,
Peggy Lou Morgan
Amazon Blog
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Yahoo Group
In the media coverage of Hurricane Katrina, I remember thinking Billy Ray would never be able to handle the shelter situations pictured. It has haunted me for more months. That fear was intensified by the “breaking news” alert that keep coming into my inbox about terrorist threats and unrest in the world.
Whether from terrorist or natural disasters it seems vital that we come up with a realization plan for caring for our special needs children in emergencies. I did a search on Google for emergency preparations. There were multiple good articles with the concept. Hurricane Tips: Special Needs and Elderly is a very good guide to get your thinking started regarding preparation.
That having been said there is some adapting to preparation suggestions that would need to be adapted to Billy Ray. The first thing that stood out when reviewing the suggestions was their suggestion for having one month’s medications in a safe location where you could go to in the event of crisis. Depending on your medication insurance or state health plan the idea that you could accumulate that much extra medications is probably unlikely. For example, we are only able to fill Billy Ray’s medication 3 days before it runs out. You could begin saving a pill or two at a time but it would be difficult to accumulate 30 days a supply. Shooting for a goal of a week’s medications might be more doable.
I am in the process of creating a simple form to anticipate what Billy Ray would need. When I do that I will put it on my website and will let you know when it’s up.
It seems important to be prepared. At the same when day to day struggles are like they are for many of us it will be difficult to prepare. Even baby steps to prepare will make a difference in how well our children will adapt in such a disaster.
Until next time,
Peggy Lou Morgan
Amazon Blog
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Yahoo Group
Saturday, April 1, 2006
Autism is a World (the DVD)
Autism is a World is now available on DVD. It is a documentary about Sue Rubin's experience with Autism. I written about this documentary and Sue Rubin in several prior posts, including but not limited to, Low Functioning and High Functioning…a Mixed Bag and Using Other’s Experience to Adapt to Your Child.
We originally saw Autism is a World as a CNN Presents and recorded it. I have shown it to numerous people because it shows how I would like to create a life of his own for Billy Ray in the future if we can get him medically stable at some point.
Sue believes that facilitative communication changed her life. She felt trapped inside Autism until she was able to communicate this way. Several reviews of Autism is a World on Amazon mention the controversy about facilitative communication. There has been controversy relative to that approach. I have to admit some caution on my part about it. However, from watching Autism is a World several times and reading many of Sue’s articles about the method, it appears to work for Sue.
I do think we miss much of the benefit of the documentary if we get stuck on facilitative communication. Autism is a World is so much more than just about her communication method. Sue gives us a chance to understand from within similar to how Temple Grandin shares from within her experience. The beauty of that is that they have similar yet different experiences. Dr. Grandin is independent and Sue Rubin recognizes she will always need assistance.
With the help of her family and other support systems, Sue has not only created a life that works for her but is an important advocate to others.
Autism is a World is a great example of adapting to create a life that works for the individual. Further is a great tool for helping others to find greater understanding of what those on the Autism spectrum experiences.
Until next time,
Peggy Lou Morgan
Amazon Blog
Parenting Your Complex Child Website
Lighthouse Parents Website
Yahoo Group
We originally saw Autism is a World as a CNN Presents and recorded it. I have shown it to numerous people because it shows how I would like to create a life of his own for Billy Ray in the future if we can get him medically stable at some point.
Sue believes that facilitative communication changed her life. She felt trapped inside Autism until she was able to communicate this way. Several reviews of Autism is a World on Amazon mention the controversy about facilitative communication. There has been controversy relative to that approach. I have to admit some caution on my part about it. However, from watching Autism is a World several times and reading many of Sue’s articles about the method, it appears to work for Sue.
I do think we miss much of the benefit of the documentary if we get stuck on facilitative communication. Autism is a World is so much more than just about her communication method. Sue gives us a chance to understand from within similar to how Temple Grandin shares from within her experience. The beauty of that is that they have similar yet different experiences. Dr. Grandin is independent and Sue Rubin recognizes she will always need assistance.
With the help of her family and other support systems, Sue has not only created a life that works for her but is an important advocate to others.
Autism is a World is a great example of adapting to create a life that works for the individual. Further is a great tool for helping others to find greater understanding of what those on the Autism spectrum experiences.
Until next time,
Peggy Lou Morgan
Amazon Blog
Parenting Your Complex Child Website
Lighthouse Parents Website
Yahoo Group
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