By Susan Howatch is among my favorite modern historical fiction. Howatch is a masterful writer and created a series that revolves around politics of the Church of England from the 1930s through the 1960s.
As a person fairly new to the Anglican Communion, the Starbridge series brings to life the societal, theological and political issues that brought us to where we are today - schism. The schism we experience today has roots reaching far back in time and this series defined for me just how we got here and why.
The Starbridge series unraveled the complexities of the impact of the post-modern culture on the Church within the differing angles of the three main variations of Anglicanism – Anglo-Catholics, Evangelicals and those with Charismatic traits/beliefs.
Each protagonist (ordained clergy) has a false goal, reflected in a false self, as described in the title of each of the six books. This leads to destructive choices made by living for themselves and not for God. Through spiritual direction, they become aware of what they need to do to be redeemed.
I find it interesting that the presence of evil and spiritual warfare is dealt with in this series. So many people would like to believe that evil is not something we need to guard against. Living in a diocese undergoing massive spiritual warfare, I can tell you evil is always lurking.
I love that each chapter begins with a quote from 20th century theologians which lead to plot development and influence the protagonist’s thoughts and actions.
Has anyone else read this series? I am working on the St. Benet’s trilogy next!
Saturday, October 31, 2009
Wednesday, October 28, 2009
Updated Resource
Teaching Reading to Children with Down Syndrome by Patricia Oelwein has been updated. From the Woodbine House website:
"Now Available...Teaching Reading is updated with refreshed Resources, a CD-ROM of Appendices, and a new cover!
Reading is an essential, enriching, and attainable skill for children with Down syndrome. This guide presents a nationally recognized reading program for children with Down syndrome that can be used to effectively meet a child's unique learning needs and style.
The reading method and lessons presented here are specifically designed to be motivating, fun, and rewarding. Filled with sample flash cards, games, charts, and recommended story books, the program emphasizes the visual learning style typical of most children with Down syndrome. Parents can customize lessons to capture their child's interests and set the learning pace to a level for greatest success.
This step-by-step guide to reading allows parents to work with their child at home and helps them coordiate reading lessons with teachers, ensuring the continuity of their child's education year after year.
Now includes a CD-ROM of all the visual supports. Print out the Appendices--picture and word cards, lotto games, charts, and more--as often as you need!
Do you need just the CD-ROM?
You can order the CD-ROM for $6 (including shipping & handling) by calling our office at 800-843-7323.
Note: CD-ROM not available for order online."
Thursday, October 22, 2009
Down Syndrome and Challenging Behaviors
If you are a parent with a child with Down syndrome (Ds), you might know our kiddos show higher rates of challenging behaviors than their typically developing peers. Challenging behaviors common to children with Ds include wandering, attention difficulties, inappropriate social behaviors, noncompliance, and compulsive behavior.
Did you know that many children with Ds do not respond to typical parenting styles? As parents, we often use negative consequences (time-out, spanking, punishment) for inappropriate behavior. In many cases, using negative consequences with the child with Ds can exacerbate behavior issues!
Reagan was one of these kids. Like many children with Ds, she has quite the delightful personality. She is kind, thoughtful and affectionate most of the time. She is right there when someone is in need to offer her love and support. I don't think she has a malicious bone in her body but we have faced many challenging behaviors. Challenging behaviors in children with Ds tend to be complex in nature - related to processing/language difficulties, fear of failure/motivation, cognitive issues, lack of choices, etc.
For Reagan, the most challenging behaviors stem from her highly stubborn nature. I think every parent of a child with Ds deals with what appears to be an exaggerated stubborn streak. Negative consequences did nothing to change her patterns of behavior.
As a homeschooling parent, I took our discipline issues very seriously. After all, without control of challenging behaviors and discipline (on all parts) we cannot effectively educate our children at home. Reducing challenging behaviors had to become a priority if we were to continue on our homeschooling journey.
In my research, I found that children with Ds respond better to positive behavior supports which encourage appropriate behaviors. Little things like sincere praise, positive attention to appropriate behaviors, and rewards made a huge difference in effecting changes in behavior.
My parenting patterns had to change to effect changes in Reagan’s behavior. I had to be much more creative in parenting this child to make our home environment more conducive to learning and her behavior outside the home socially acceptable so that learning and social opportunities were more available to her.
I learned about looking at behavior in the context in which it occurs. I learned about A-B-C (Antecedents – Behavior – Consequences) patterns to look for ways to effect changes in behavior.
I learned that ridding a child with Down of problem behaviors often takes more learning trials than it would with a typically developing child.
I learned that you must teach the child exactly what you expect. Most young children with Down syndrome learn little incidentally (by example) - appropriate behavior must be explicitly taught and modeled. Skill building vs. trial and error which can lead to frustration and even embarrassment!
The younger child may benefit from a pictorial guide to refer to when placed in known difficult situations as a reminder of what is expected. In the school age child, social stories are often used to teach social skills to children with special needs but can be adapted to address challenging behaviors in the child with Down syndrome. They are easy to create on a word processor and can be tailored to the unique needs of the child.
I also ran across a book that I recommend to every parent with a child with special needs, Steps to Independence, Teaching Everyday Skills to Children with Special Needs, by Bruce L. Baker and Alan Brightman. This book not only speaks to skill development but has several chapters devoted to behavior and positive behavioral support. The book does not specifically target children with Ds but I have found it to be an invaluable resource!
At 14, Reagan understands negative consequences and I use them effectively as necessary. In the real world there are negative consequences for inappropriate behaviors so she finds them at home too. I think maturity has made a huge difference in her ability to understand the consequences of her behaviors and increase her compliance.
Homeschooling Reagan at home has been quite beneficial in ridding her of challenging behaviors. She is in an environment where behavior issues can be dealt with immediately and consistently. As she has matured and her language comprehension increases, we can discuss various choices she has as she problem solves and the consequences of her actions. She gets plenty of time out in the community - more opportunities for working on developing proper behavior and social skills. At times it has been exhausting - especially in the early years - but definitely well-worth every ounce of effort! She is growing into a lovely young lady.
Reagan, like most of us, is still a work in progress. We continue to work on appropriate behaviors and social skills in the home and around the community. It is said that good behavior and social skills are the keys to success for adults with Down syndrome so we continue working to become the best we can be!
Did you know that many children with Ds do not respond to typical parenting styles? As parents, we often use negative consequences (time-out, spanking, punishment) for inappropriate behavior. In many cases, using negative consequences with the child with Ds can exacerbate behavior issues!
Reagan was one of these kids. Like many children with Ds, she has quite the delightful personality. She is kind, thoughtful and affectionate most of the time. She is right there when someone is in need to offer her love and support. I don't think she has a malicious bone in her body but we have faced many challenging behaviors. Challenging behaviors in children with Ds tend to be complex in nature - related to processing/language difficulties, fear of failure/motivation, cognitive issues, lack of choices, etc.
For Reagan, the most challenging behaviors stem from her highly stubborn nature. I think every parent of a child with Ds deals with what appears to be an exaggerated stubborn streak. Negative consequences did nothing to change her patterns of behavior.
As a homeschooling parent, I took our discipline issues very seriously. After all, without control of challenging behaviors and discipline (on all parts) we cannot effectively educate our children at home. Reducing challenging behaviors had to become a priority if we were to continue on our homeschooling journey.
In my research, I found that children with Ds respond better to positive behavior supports which encourage appropriate behaviors. Little things like sincere praise, positive attention to appropriate behaviors, and rewards made a huge difference in effecting changes in behavior.
My parenting patterns had to change to effect changes in Reagan’s behavior. I had to be much more creative in parenting this child to make our home environment more conducive to learning and her behavior outside the home socially acceptable so that learning and social opportunities were more available to her.
I learned about looking at behavior in the context in which it occurs. I learned about A-B-C (Antecedents – Behavior – Consequences) patterns to look for ways to effect changes in behavior.
I learned that ridding a child with Down of problem behaviors often takes more learning trials than it would with a typically developing child.
I learned that you must teach the child exactly what you expect. Most young children with Down syndrome learn little incidentally (by example) - appropriate behavior must be explicitly taught and modeled. Skill building vs. trial and error which can lead to frustration and even embarrassment!
The younger child may benefit from a pictorial guide to refer to when placed in known difficult situations as a reminder of what is expected. In the school age child, social stories are often used to teach social skills to children with special needs but can be adapted to address challenging behaviors in the child with Down syndrome. They are easy to create on a word processor and can be tailored to the unique needs of the child.
I also ran across a book that I recommend to every parent with a child with special needs, Steps to Independence, Teaching Everyday Skills to Children with Special Needs, by Bruce L. Baker and Alan Brightman. This book not only speaks to skill development but has several chapters devoted to behavior and positive behavioral support. The book does not specifically target children with Ds but I have found it to be an invaluable resource!
At 14, Reagan understands negative consequences and I use them effectively as necessary. In the real world there are negative consequences for inappropriate behaviors so she finds them at home too. I think maturity has made a huge difference in her ability to understand the consequences of her behaviors and increase her compliance.
Homeschooling Reagan at home has been quite beneficial in ridding her of challenging behaviors. She is in an environment where behavior issues can be dealt with immediately and consistently. As she has matured and her language comprehension increases, we can discuss various choices she has as she problem solves and the consequences of her actions. She gets plenty of time out in the community - more opportunities for working on developing proper behavior and social skills. At times it has been exhausting - especially in the early years - but definitely well-worth every ounce of effort! She is growing into a lovely young lady.
Reagan, like most of us, is still a work in progress. We continue to work on appropriate behaviors and social skills in the home and around the community. It is said that good behavior and social skills are the keys to success for adults with Down syndrome so we continue working to become the best we can be!
Tuesday, October 20, 2009
Foodie?
I guess I've not thought about what the term foodie means. When I saw this sign on a recent trip to Cincinnati, OH, I knew it was speaking of me! I cannot visit Cincinnati without making a stop at Jungle Jim's International Market.
Jungle Jim's is a self-described theme park for foodies. For someone like me, hailing from a small town where grocery stores are of the large chain variety with not a lot of imagination, a trip to Jungle Jim's sends thrills up and down my spine! I guess I am a foodie.
Jungle Jim's is a funky place. Surprises abound. It is NOT your usual marketplace! Ever seen a boat in the produce section?
Or the fish market underneath a shop-lined boardwalk?
Jungle Jim's boasts of "offering 150,000 different items from over 75 countries." Some of it is quite exotic. This fruit, durian, looked very interesting to my girls.
I'm so glad we didn't satisfy our curiosity and purchase the durian for a snack later. I understand the smell is offensive despite the savory to slightly sweet (depending on the variety) creamy flesh. In certain parts of Asia the fruit is banned in public places and can draw people dressed in hazmat suits to remove the odorous fruit from hotel rooms!
Ah, the dangers of living a foodie life...
Monday, October 19, 2009
Desert Spirituality - An Encounter with God
The veil that I spoke of in Grief in the Shadows is beginning to lift. Life has greater clarity and focus. As the veil recedes though, I have found a bit more anxiety present in my day to day activities. While pondering this, it occurred to me just how present the Lord is during my grief - whether it be in the acute phase or episodic shadow grief. I was missing His deeply felt presence associated with the veil!
Which led me to think about how we generally experience the presence of the Lord. I know He is always there but why is it sometimes He is more tangibly present?
In my daily life, I know God in many places - the beauty of His creation, His word, the sacraments, in prayer etc. During my grief journey, our relationship was a bit more intimate.
As I've said before, the loss of a child is devastating beyond description. After Michelle’s death, I felt my heart and soul were a nuclear wasteland. I had given everything I had within me to love and support my precious child during her suffering. Much of me had died with her – only a shell of my former self remained.
What was I to do? I had friends who were more than supportive. I saw a Christian therapist. I spoke with several priests who were comforting. How do you heal from the death of a child? Learning to live without her was excruciating. A still small voice whispered, “Wait upon the Lord.”
So I waited. I struggled with obedience. Life as I knew it was over. I was completely without motivation – lost in my grief. I wondered what I was waiting for.
I struggled with God. I knew He was there and desired the struggle. Where can you go if you can’t go to the Father?
I asked Him all the hard questions. Why me? I believe. I trusted you. I have always loved you and tried to serve you to the best of my ability. Why her? An innocent child created in your image. How could you let her suffer so? I yelled and screamed in my rage and He cried with me, comforting me as a Father does.
Jesus was waiting. Waiting for me to turn my eyes from what I had or didn’t have here on earth - waiting to transform my wounded heart and soul.
I thought it strange at the time, but He took me to a desert place. A place without visible signs of life. A monochromatic landscape of rolling hills of sand and rock with an occasional seemingly bottomless abyss. A place without birds or other wildlife, no flowers, trees, bushes or grass, no water. Not another human in sight. It was a place without pain or fear. In this desolate place, I rested in the love and safety of the arms of Jesus. I believe these were encounters with the Living God.
It was here that I was offered the substance of my new self – tossing away the façade that remained. A new self, based on a loving, merciful God, letting go of my chaotic upbringing and healing the past and the present.
The Holy Spirit worked to transform my heart and soul. I struggled more. I wanted to hang onto the pain for it was the only thing I had left of Michelle. Oh, I had her ‘things’ but they had become meaningless without her. The pain was a tangible connection with the child I had lost in the pain present whether awake or asleep – unless I was with Jesus in the desert. I was being asked to give it over….and I did eventually. The new, transformed self was/is not perfect. She is still sinful and broken but joyful in the transformation, edified by the real presence of God throughout my life – especially in my grief.
The work of healing after the loss of a child is to walk on holy ground. Though invaluable, the real work cannot be accomplished with a therapist, a good and dear friend or family member. It is about getting things right with God, developing a mature faith, dependent on God the Father, God the Son, and God the Holy Spirit.
I left that place a long time ago - or was it taken from me as I healed? When we visited the Holy Land in 2006, our tour made a stop in the wilderness where Jesus was tempted. Before me and all around me I saw a familiar place. I had been there in my grief. I had somehow forgotten about it as the new self developed. I wept as I was reminded how much God loves His children - so much that not one sparrow will fall apart from the will of the Father.
Saturday, October 17, 2009
Plagiarism
Ever had your original content stolen? I deal with the at least once a year - not necessarily here on my blog - but with articles I have published elsewhere. Most website owners who like my stuff and feel it valuable to the homeschooling community will write me and ask permission to publish the information on their website. It is the morally right and polite thing to do.
On rare occasions I have seen my original content, often copied word for word, around the web. Usually I just write the website owner a note and get a fairly quick reply in the form of an apology and removal of the information. Of course, its usually not their fault - the fault lies with someone who who works for them. The offenders are usually extremely contrite. They know plagiarism is a crime.
This time, a simple, quick e-mail outlining my concerns did not work. I got absolutely no response.
Am I wrong to be surprised that this would happen within the homeschooling community? I guess I shouldn't be. After all, we are all sinners.
Perhaps the offending website is just a website that likes to make money off of the homeschooling community by offering informational content for homeschoolers. I wouldn't know since they did not respond to my inquiries.
Perplexed as to what step to take next, I took to the internet in search of answers. Darren Rowse of Problogger had an easy to follow, step-by-step plan of action for me to follow.
So, I worked my way through the steps. I contacted the site owner, ran a whois search, and contacted the website host without response.
Step 4, contacting the site's advertisers, finally yielded results. The stolen content has been removed.
I'm happy to say I did not have to go to step 5, name and shame, and beyond.
I have often wondered why it bothers me so much to find my work appearing around the web without credit. Most of my work is just putting together pieces of the puzzle in how children with Down syndrome learn. I have put in countless hours in accomplishing that task for the benefit of my daughter -- and others traveling a similar path. I give it away freely and without reservation when asked. I look at all those countless hours spent in research as the Lord's work in me and a way to serve others.
We're talking about my blood, sweat and tears here. It took me many years to get where we are in educating my daughter. After years of unanswered question from those who are supposed to know (professionals), I did the work to find the answers. So, it does bother me when people steal from me. In the few seconds it takes to copy and paste, a rare person here and there will use that information and call it their own.
It also offends God - see the Ten Commandments.
Next time, just ask. What is mine is yours -- if you ask.
On rare occasions I have seen my original content, often copied word for word, around the web. Usually I just write the website owner a note and get a fairly quick reply in the form of an apology and removal of the information. Of course, its usually not their fault - the fault lies with someone who who works for them. The offenders are usually extremely contrite. They know plagiarism is a crime.
This time, a simple, quick e-mail outlining my concerns did not work. I got absolutely no response.
Am I wrong to be surprised that this would happen within the homeschooling community? I guess I shouldn't be. After all, we are all sinners.
Perhaps the offending website is just a website that likes to make money off of the homeschooling community by offering informational content for homeschoolers. I wouldn't know since they did not respond to my inquiries.
Perplexed as to what step to take next, I took to the internet in search of answers. Darren Rowse of Problogger had an easy to follow, step-by-step plan of action for me to follow.
So, I worked my way through the steps. I contacted the site owner, ran a whois search, and contacted the website host without response.
Step 4, contacting the site's advertisers, finally yielded results. The stolen content has been removed.
I'm happy to say I did not have to go to step 5, name and shame, and beyond.
I have often wondered why it bothers me so much to find my work appearing around the web without credit. Most of my work is just putting together pieces of the puzzle in how children with Down syndrome learn. I have put in countless hours in accomplishing that task for the benefit of my daughter -- and others traveling a similar path. I give it away freely and without reservation when asked. I look at all those countless hours spent in research as the Lord's work in me and a way to serve others.
We're talking about my blood, sweat and tears here. It took me many years to get where we are in educating my daughter. After years of unanswered question from those who are supposed to know (professionals), I did the work to find the answers. So, it does bother me when people steal from me. In the few seconds it takes to copy and paste, a rare person here and there will use that information and call it their own.
It also offends God - see the Ten Commandments.
Next time, just ask. What is mine is yours -- if you ask.
Friday, October 16, 2009
Back in the Groove
In my last homeschooling update, I noted that Reagan was less than motivated to return to our regular homeschooling routine after an entire summer off. I’m happy to report that she is back in the groove of things. Reagan wakes each day excited to begin the day and her usual schooling routine.
Speaking of grooves, it is a well-known fact that people with Down syndrome thrive with something called ‘the groove.’
From Down Syndrome: Visions for the 21st Century, edited by Cohen, Nadel and Madnick, p. 228
When I first discovered the presence and importance of grooves in my research about people with Down syndrome, I noted the fine art of the groove in my daughter’s life. The groove allows her and her very set routine to accomplish the activities of daily living, her school work and recreational time in a set order where she doesn’t have to think about it.
The groove is so common in individuals with Ds that a book, Mental Wellness in Adults with Down Syndrome: A Guide to Emotional and Behavioral Strengths and Challenges by Dennis McGuire and Brian Chicoine, has devoted a whole chapter to these characteristic behaviors. Do not wait until your child is older to get this very important book. It speaks to many issues common to children/teens/adults with Ds, such as challenging behaviors, autism, self-talk, memory issues and much more.
Speaking of grooves, it is a well-known fact that people with Down syndrome thrive with something called ‘the groove.’
From Down Syndrome: Visions for the 21st Century, edited by Cohen, Nadel and Madnick, p. 228
"A groove is simply defined as a set pattern or routine in one’s actions or thoughts. In the general population, this tendency may be considered obsessive-compulsive disorder but in the individual with Down syndrome (Ds), it provides them with structure and order. The groove allows people with processing disorders (common in Ds) to have more control over their lives."
When I first discovered the presence and importance of grooves in my research about people with Down syndrome, I noted the fine art of the groove in my daughter’s life. The groove allows her and her very set routine to accomplish the activities of daily living, her school work and recreational time in a set order where she doesn’t have to think about it.
The groove is so common in individuals with Ds that a book, Mental Wellness in Adults with Down Syndrome: A Guide to Emotional and Behavioral Strengths and Challenges by Dennis McGuire and Brian Chicoine, has devoted a whole chapter to these characteristic behaviors. Do not wait until your child is older to get this very important book. It speaks to many issues common to children/teens/adults with Ds, such as challenging behaviors, autism, self-talk, memory issues and much more.
Saturday, October 10, 2009
How Fitting in My Melancholy State
A new release by Steven Curtis Chapman - Heaven Is The Face
H/T Barbara Curtis at Mommy Life. Feel free to stop by Barbara's blog to hear how this song came to Mr. Chapman after the tragic accident which took his daughter's life last year.
H/T Barbara Curtis at Mommy Life. Feel free to stop by Barbara's blog to hear how this song came to Mr. Chapman after the tragic accident which took his daughter's life last year.
Monday, October 5, 2009
Grief in the Shadows
This time of year brings on a familiar sensation. Since the loss of my oldest daughter, the crisp, cooler weather which signifies the arrival of fall brings with it a veil which slips over my heart and mind. Life takes blunted tones – lacking the meaning and joy that generally fills my days.
The veil is commonly known as shadow grief. The experts consider it normal after the loss of a child. It can have many triggers but is usually associated with the birthday or anniversary of the day which the child passes on. Fleeting episodes will be with me for the rest of my days on this earthly journey.
Some years I don’t see it coming, but unconsciously it creeps in and slowly comes to my awareness. It comes with extreme fatigue, irritability, difficulty concentrating and general loss of interest in daily activities. It is no longer associated with acute pain but only occasional tearfulness.
In some strange way, I find comfort in it because I know Michelle is on the other side of the veil that separates us waiting for me. Waiting for the last day when we will all rise in glory and live in heaven for all eternity.
For you see, I believe in the promise that Jesus Christ made. The promise of eternal life for all who believe that Jesus is the Way, the Truth, and the Life.
Until then, I know the veil will soon be lifted and I will live fully and joyfully in that promise and my hope in Him. The veil serves only to remind me of that precious love between and mother and her child and that our separation is only temporary.
With a grateful heart - for her life and the love we shared, I sit in the shadow of the foot of the cross and pray that all I do and say will glorify Him...
The veil is commonly known as shadow grief. The experts consider it normal after the loss of a child. It can have many triggers but is usually associated with the birthday or anniversary of the day which the child passes on. Fleeting episodes will be with me for the rest of my days on this earthly journey.
Some years I don’t see it coming, but unconsciously it creeps in and slowly comes to my awareness. It comes with extreme fatigue, irritability, difficulty concentrating and general loss of interest in daily activities. It is no longer associated with acute pain but only occasional tearfulness.
In some strange way, I find comfort in it because I know Michelle is on the other side of the veil that separates us waiting for me. Waiting for the last day when we will all rise in glory and live in heaven for all eternity.
For you see, I believe in the promise that Jesus Christ made. The promise of eternal life for all who believe that Jesus is the Way, the Truth, and the Life.
Until then, I know the veil will soon be lifted and I will live fully and joyfully in that promise and my hope in Him. The veil serves only to remind me of that precious love between and mother and her child and that our separation is only temporary.
With a grateful heart - for her life and the love we shared, I sit in the shadow of the foot of the cross and pray that all I do and say will glorify Him...
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