I have been thinking about a couple of posts I have read on other blogs while I was researching the links I included in yesterday’s post. It seems important to present the balance between the agony and joy of parenting a complex special needs child. I am working on a post to talk about the various places I experience in being Billy Ray’s mom. Depending on how Billy Ray is tomorrow I maybe able to post it then. Otherwise, I will post it on Monday.
For today it seemed like time to share some comic relief. Last night we had a bit of a rough evening with Billy Ray who is recovering from dental work. After he was finally asleep, I went to one of my favorite blogs hoping that Lori Fox had written one of her wonderful humorous pieces. I was not disappointed. See Boy Meets Goal by Lori Miller Fox.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Friday, February 17, 2006
Thursday, February 16, 2006
The Diversity Within Finding Understanding and Acceptance
You know what they say about smart minds think alike or something like that. Yesterday was one of those days where several of my favorite blogs and my email messages were thinking along the same lines. Most of us want to find understanding for our children who experience special needs but it is interesting the difference in the way we go about it.
According to my blog stats, there was a lot of visitors from a post on Neurodiversity’s weblog, One for the Times. In that post Kathleen Seidel is commenting on a book review by Polly Morrice for the New York Times on the book A Mind Apart by Susanne Antonetta. Kathleen found the review condescending toward people with various neurodiversities. I have not read the book A Mind Apart though I am eager to after reading Morrice’s review of it.
Kathleen writes: “Increasingly, many publicly assert that their lives are not overwhelmingly tragic, however great the troubles they or their families face due to their “off kilter traits.”
I wrote to Kathleen to thank her for links to this blog. Reading her reply, I stepped further on the soapbox I started yesterday before I read her blog and email. Kathleen wrote: “I hear from a lot of people who assume that the only parents who can feel good about parenting a kid on the autistic spectrum are ones whose kids are relatively "high-functioning." Thank you for making it so clear that that's hogwash.”
Society strives for excellence. There is nothing wrong with trying to be the best we can be. I want that for my complex special needs son, Billy Ray, as well. He will not be a Rhodes scholar and president like Bill Clinton but he has value to contribute to the world. He does not have to do the things road scholars do. He is entitled to have the opportunity to the best he can do.
In addition to the striving for excellence, there is a major striving to end all suffering. That is certainly an important effort. The problem is that disabilities which are preceived as suffering are not always understood enough to make informed choices. I am not talking about abortion here though some of the quoted articles reference that. There are many other choices to make relative to our children such as whether to bring them into our home, school programs, the effort we will put into their care and education, etc.
In The Problem With an Almost-Perfect Genetic World article in the NY Times 11/20/05, Andrew Imparato, president of the American Association of People With Disabilities, is quoted as saying “We're trying to make a place for ourselves in society at a time when science is trying to remove at least some of us.”
Susan Senator’s post Disability Baggage Check comments on the upcoming book A Different Kind of Perfect, by Cindy Dowling, Neil Nicoll, and Bernadette Thomas. Susan uses humor (which she does so well) to make the point about doctor’s who give their opinion along with the news that a newborn has one disability or another.
It seems important to remember that until the last decade or so large governmental institutions were home to a large percentage persons experiencing disabilities. The trend to close those institutions and bring their residents into the community is still evolving. Communities have not necessarily been familiar sure how to be accepting.
Even doctors and other professionals may not have had the opportunity to care for as many neurodiverse persons because they were not part of the average practice. I created the documentation system in Parenting Your Complex Child (AMACOM Books, April 2006) to help Billy Ray’s doctors see him as he really is before they treated him.
The more we as parents talk about our children, advocate for their needs and bring them out into the community (even the smaller community I recommend in Parenting Your Complex Child) the greater chance the winds of change will occur.
George F. Will, well known columinist and media person, writes of his son in Jon Will’s Aptitudes . The last line of his article comments that Jon was born on his father’s birthday and that he is the gift that keeps on giving.
Being Billy Ray’s Mom is without a doubt the greatest challenge of my life. However, being Billy Ray’s Mom is absolutely the greatest joy in my life too. I wouldn’t trade him what we have had together for the 13 kids (like my grandmother had) that I dreamed of.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
According to my blog stats, there was a lot of visitors from a post on Neurodiversity’s weblog, One for the Times. In that post Kathleen Seidel is commenting on a book review by Polly Morrice for the New York Times on the book A Mind Apart by Susanne Antonetta. Kathleen found the review condescending toward people with various neurodiversities. I have not read the book A Mind Apart though I am eager to after reading Morrice’s review of it.
Kathleen writes: “Increasingly, many publicly assert that their lives are not overwhelmingly tragic, however great the troubles they or their families face due to their “off kilter traits.”
I wrote to Kathleen to thank her for links to this blog. Reading her reply, I stepped further on the soapbox I started yesterday before I read her blog and email. Kathleen wrote: “I hear from a lot of people who assume that the only parents who can feel good about parenting a kid on the autistic spectrum are ones whose kids are relatively "high-functioning." Thank you for making it so clear that that's hogwash.”
Society strives for excellence. There is nothing wrong with trying to be the best we can be. I want that for my complex special needs son, Billy Ray, as well. He will not be a Rhodes scholar and president like Bill Clinton but he has value to contribute to the world. He does not have to do the things road scholars do. He is entitled to have the opportunity to the best he can do.
In addition to the striving for excellence, there is a major striving to end all suffering. That is certainly an important effort. The problem is that disabilities which are preceived as suffering are not always understood enough to make informed choices. I am not talking about abortion here though some of the quoted articles reference that. There are many other choices to make relative to our children such as whether to bring them into our home, school programs, the effort we will put into their care and education, etc.
In The Problem With an Almost-Perfect Genetic World article in the NY Times 11/20/05, Andrew Imparato, president of the American Association of People With Disabilities, is quoted as saying “We're trying to make a place for ourselves in society at a time when science is trying to remove at least some of us.”
Susan Senator’s post Disability Baggage Check comments on the upcoming book A Different Kind of Perfect, by Cindy Dowling, Neil Nicoll, and Bernadette Thomas. Susan uses humor (which she does so well) to make the point about doctor’s who give their opinion along with the news that a newborn has one disability or another.
It seems important to remember that until the last decade or so large governmental institutions were home to a large percentage persons experiencing disabilities. The trend to close those institutions and bring their residents into the community is still evolving. Communities have not necessarily been familiar sure how to be accepting.
Even doctors and other professionals may not have had the opportunity to care for as many neurodiverse persons because they were not part of the average practice. I created the documentation system in Parenting Your Complex Child (AMACOM Books, April 2006) to help Billy Ray’s doctors see him as he really is before they treated him.
The more we as parents talk about our children, advocate for their needs and bring them out into the community (even the smaller community I recommend in Parenting Your Complex Child) the greater chance the winds of change will occur.
George F. Will, well known columinist and media person, writes of his son in Jon Will’s Aptitudes . The last line of his article comments that Jon was born on his father’s birthday and that he is the gift that keeps on giving.
Being Billy Ray’s Mom is without a doubt the greatest challenge of my life. However, being Billy Ray’s Mom is absolutely the greatest joy in my life too. I wouldn’t trade him what we have had together for the 13 kids (like my grandmother had) that I dreamed of.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Wednesday, February 15, 2006
Getting the Message Out is Becoming More Urgent
We have frequently discussed the difficulty at finding understanding as parents of complex special needs children including the posts Unrealistic Expectations and Feeling Misunderstood . It is difficult for those not walking in our shoes to know how uncomfortable they can be.How can we expect some mother who tells her son or daughter to go get dressed while she gets dressed to understand what it feels like to actually have both her child and herself somewhat dressed to go out. It felt so good to accomplish that on Sunday that I actually had Larry snap this picture of Billy Ray and me.
Public awareness is becoming more urgent. It is not just about the warm fuzzy of feeling understood by those in the community anymore. Times are tough worldwide. It seems every time we turn on the news there is something about how our state doesn’t have enough funding to keep regular education going. Fighting for care and education for our kids is much more difficult. Based on what I hear from Australia and the United Kingdom similar experiences occur there.
If society sees all of our complex children as Corky from Life Goes On or the Rain Man nothing is going to change for them. We need to communicate about our children in every possible way we can to everyone who will listen.
Advocating as described in Parenting Your Complex Child (April 2006) will help. I am not so naïve as to believe that is enough. We need to bring our children in the community so that they are known and accepted.
There is another issue, while difficult to bring up, that will make a difference. Parents need to unite. Frequently there is division between those who are doing “the diet” or “alternative” approaches and those who are just trying to do what works. We must stop fighting among ourselves so that we can unite to get the message out that our kids are people first and need acceptance and programs to help them.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Tuesday, February 14, 2006
What He Does Today, He Expects to Do Always...No Matter What!!
Sometimes it is impossible to protect Billy Ray from himself. For example, yesterday he had three teeth pulled and some fillings as well. The dentist said he shouldn’t drink with a straw for two days. The sucking action could dislodge the clot and cause additional bleeding.
He does not need a straw to drink with. We use a glass with a lid because he tends to walk all over the house tipping the glass and leaving trails of juice. Thus, he routinely gets a straw in his glass. You don’t change routines with Billy Ray.
Billy Ray was probably communicating pain by his behavior as well; however, he became quite aggressive with support staff and with me when we tried to get him to drink his juice without a straw. No amount of explanation was going to work for him. We finally had to call the dentist to ascertain how serious the risk was if we let him use a straw. He said to go ahead.
We cannot change some things.
Peggy Lou Morgan
http://www.parentingyourcomplexchld.com/
http://www.lighthouseparents.com/
He does not need a straw to drink with. We use a glass with a lid because he tends to walk all over the house tipping the glass and leaving trails of juice. Thus, he routinely gets a straw in his glass. You don’t change routines with Billy Ray.
Billy Ray was probably communicating pain by his behavior as well; however, he became quite aggressive with support staff and with me when we tried to get him to drink his juice without a straw. No amount of explanation was going to work for him. We finally had to call the dentist to ascertain how serious the risk was if we let him use a straw. He said to go ahead.
We cannot change some things.
Peggy Lou Morgan
http://www.parentingyourcomplexchld.com/
http://www.lighthouseparents.com/
Monday, February 13, 2006
There Was A Reason for Billy Ray's Communication by Behavior
Billy Ray’s credibility has been proved again!! Many times he communicates pain by extreme behavior and nothing in the medical procedures explain it. Eventually we find out he was having some medical issues going on that weren’t obviously.
Today was another case in point. When his behavior began to deteriorate in June, I investigated dental issues first. There was nothing in the x-ray or exam that showed he should be having major pain. There were some things to deal with but not believed emergencies. We scheduled an appointment to deal with needed work. However, that appointment had to be cancelled. He was hospitalized with leaking appendix and other issues. Then both the dentist and the medical provider felt he needed to be medically stable before pursuing the dental work.
Recently he went back to the dentist for an emergency appointment because he seemed to be having dental pain. X-rays were taken and Dr. Hester, a very kind and thorough dentist, put pressure on anything that might be causing pain and found nothing to explain the pain Billy Ray seemed to be communicating by his behavior.
Today he went back to Dr. Hester to have the work completed. Sure enough, a tooth with an extraordinarily difficult root and decay did not show on the x-rays. That is probably partially because it is very difficult to x-ray Billy Ray. Dr. Hester said that it had to be causing him extreme pain.
There are other issues involved in his communication by behavior such as the hypothyroid and difficulty maintaining appropriate blood level on his mood stabilizer. However, removing this source of pain will surely help.
I have been saying to several people involved with Billy Ray that I knew there was something we could not find. I didn’t know what but just knew that I knew. There was nothing else to do but practice the lighthouse concept. This morning I prayed that if the problem were dental he would help Dr. Hester to find it.
My advice is trust your gut for such things. When you have adapted his life to what works for him or her so you know it isn’t something at home or at school, keep searching for the answers.
I think about Billy Ray’s behavior when his appendice was leaking and the difficulty in demonstrating it to the emergency room doctor and this situation. Then remember the situation we talked about in My Outrage…Mother Gets Suspended Sentence For Killing Son and wonder if Patrick was trying to communicate something to his mother by his behavior.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Today was another case in point. When his behavior began to deteriorate in June, I investigated dental issues first. There was nothing in the x-ray or exam that showed he should be having major pain. There were some things to deal with but not believed emergencies. We scheduled an appointment to deal with needed work. However, that appointment had to be cancelled. He was hospitalized with leaking appendix and other issues. Then both the dentist and the medical provider felt he needed to be medically stable before pursuing the dental work.
Recently he went back to the dentist for an emergency appointment because he seemed to be having dental pain. X-rays were taken and Dr. Hester, a very kind and thorough dentist, put pressure on anything that might be causing pain and found nothing to explain the pain Billy Ray seemed to be communicating by his behavior.
Today he went back to Dr. Hester to have the work completed. Sure enough, a tooth with an extraordinarily difficult root and decay did not show on the x-rays. That is probably partially because it is very difficult to x-ray Billy Ray. Dr. Hester said that it had to be causing him extreme pain.
There are other issues involved in his communication by behavior such as the hypothyroid and difficulty maintaining appropriate blood level on his mood stabilizer. However, removing this source of pain will surely help.
I have been saying to several people involved with Billy Ray that I knew there was something we could not find. I didn’t know what but just knew that I knew. There was nothing else to do but practice the lighthouse concept. This morning I prayed that if the problem were dental he would help Dr. Hester to find it.
My advice is trust your gut for such things. When you have adapted his life to what works for him or her so you know it isn’t something at home or at school, keep searching for the answers.
I think about Billy Ray’s behavior when his appendice was leaking and the difficulty in demonstrating it to the emergency room doctor and this situation. Then remember the situation we talked about in My Outrage…Mother Gets Suspended Sentence For Killing Son and wonder if Patrick was trying to communicate something to his mother by his behavior.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Friday, February 10, 2006
Billy Ray's Law...2/10/06
Billy Ray’s law is playing out again today. The dental office called a couple of days ago to say they had a cancellation and could get me in earlier if I could take an 8 a.m. appointment today. We knew that would mean we would leave soon after support staff got here at 7 a.m. to be with Billy Ray because we are out from Bend (where the dentist) is a ways.
I got up at 5 a.m. hoping to have time to curl my hair and get ready. I noticed that Billy Ray had kicked his comforter on the floor. I struggled a bit with the conflict of being a “good mother” by covering up my son or not having time to get ready for my appointment if he woke up. I lost the gamble. He woke up raring to get on with his day.
It occurs to me when I write about his sleeping late in the mornings some of you must think how lucky I am that he sleeps so late. As stated before the earliest day he wakes up is staff days off – the only day I could sleep in. What might not be clear is that he often wakes up several times in the night – generally at midnight at least and frequently at 3 or 4 a.m. as well.
If I meet you at a book signing or a convention somewhere this summer and my hair is curled and I have make-up on you will know that Billy Ray is not with me that trip. Somehow the time to get myself ready loses out to Billy Ray’s law pretty regularly.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
I got up at 5 a.m. hoping to have time to curl my hair and get ready. I noticed that Billy Ray had kicked his comforter on the floor. I struggled a bit with the conflict of being a “good mother” by covering up my son or not having time to get ready for my appointment if he woke up. I lost the gamble. He woke up raring to get on with his day.
It occurs to me when I write about his sleeping late in the mornings some of you must think how lucky I am that he sleeps so late. As stated before the earliest day he wakes up is staff days off – the only day I could sleep in. What might not be clear is that he often wakes up several times in the night – generally at midnight at least and frequently at 3 or 4 a.m. as well.
If I meet you at a book signing or a convention somewhere this summer and my hair is curled and I have make-up on you will know that Billy Ray is not with me that trip. Somehow the time to get myself ready loses out to Billy Ray’s law pretty regularly.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Thursday, February 9, 2006
More Interesting Reading
I wanted to tell you about a website I have recently discovered thanks to Charlie Fox at Special Ed Law Blog who gave me the link.
It is Special Needs Future Planning. The site belongs to Attorney Bryan Rubin, specializing in special needs families. Mr. Rubin understands what we experience well because his son, Mitch, 25 years old, experiences Autism and other special needs diagnosis. Whether you are in Illinois near Mr. Rubin or not I think you will find his site very informative.
I could identify with the following statement by Mr. Rubin so much with all that Billy Ray has been going through medically: “BUT... we wish, we pray that we live at least one day longer than our child, and that we will not have to place the "obligation" or "burden" upon others. We hope, we pray, that we will always "be there" for our child.”
We all hate to admit it but long to survive our son or daughter who experiences special needs. See Open Letter ot My Fellow Parents for the rest of the article.
While you are surfing the net you might take another look at Special Ed Law Blog if you haven’t been there in a while. Charlie and Lori Fox have expanded topics. It is a very helpful blog.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
It is Special Needs Future Planning. The site belongs to Attorney Bryan Rubin, specializing in special needs families. Mr. Rubin understands what we experience well because his son, Mitch, 25 years old, experiences Autism and other special needs diagnosis. Whether you are in Illinois near Mr. Rubin or not I think you will find his site very informative.
I could identify with the following statement by Mr. Rubin so much with all that Billy Ray has been going through medically: “BUT... we wish, we pray that we live at least one day longer than our child, and that we will not have to place the "obligation" or "burden" upon others. We hope, we pray, that we will always "be there" for our child.”
We all hate to admit it but long to survive our son or daughter who experiences special needs. See Open Letter ot My Fellow Parents for the rest of the article.
While you are surfing the net you might take another look at Special Ed Law Blog if you haven’t been there in a while. Charlie and Lori Fox have expanded topics. It is a very helpful blog.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
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