Yesterday I was reading a blog I like (Susan Senator’s). Her post The Mythical Autism Beast (http://susansenator.com/blog/2005/12/mythical-autism-beast.html) caught my attention for a number of reasons. This post begins by quoting an article from The Boston Globe Sunday Magazine, 12/4/05 by Darshak Sanghavi, titled The Secret Truth.
Dr. Sanghavi’s comment “AUTISM FRIGHTENS PARENTS more than almost any disorder, since it implies that the child can never function independently in society and may never fully reciprocate, or ever fully appreciate, the expressions of love” which “got under my [Susan’s] skin also bothered me.
Any diagnosis is frightening if you don’t know what it means. For example, when Billy Ray was diagnosed with pediatric bipolar the psychiatrist provided me with literature which said that the diagnosis of pediatric bipolar was more undesirable than a diagnosis of cancer. I asked the pediatrician about that statement. She replied that pediatric bipolar will go on and on and treatment is more difficult. Cancer can be cured or will, unfortunately, end at some point. I think many parents may see the diagnosis of Autism similarly because there are so many unknowns.
Susan ends her post with “What we need is more honest and positive accounts of living with autism. Parents need facts that help them strategize and advocate for their kids, not horror stories and hopelessness. They need hugs and encouragement. Autism need not be a death sentence. Our children were not stolen; we just have to look a bit harder to see them.”
I couldn’t agree more. In prior posts herein, we have discussed that the best way parents can support each other is by being open about what we experience. Disabilities have been considered a stigma of sorts and just not talked about unless necessary. Parents are frightened by the diagnosis more because so little is known rather than the disease itself.
After reading Susan’s blog post and going to The Globe to order the article, there were other things that I want to comment about too.
The article by Dr. Sanghavi is basically about the vaccine-autism controversary. He profiles a family whose sons experience Autism, the beliefs they have established and the choices they have made in doing what is best for their sons.
In the same paragraph, that Susan quoted the first sentence (quoted above), Dr. Sanghavi writes: “Though portrayed in the public imagination by characters such as Dustin Hoffman in Rain Man, autistic people are like snowflakes: No two are alike, and the clinical spectrum ranges from severe disability to near normalcy.” Absolutely!!
That is exactly why I wrote Parenting Your Complex Child (AMACOM Books April 2006). I devoured all the literature I could on Autism when Billy Ray first demonstrated symptoms and we finally got the diagnosis. Some books were helpful and some were not. Many told me what I should do for Billy Ray specifically. Those generally didn’t work for us. The ones that helped the most, such as Temple Grandin’s books and articles, told what she experienced. I could then glean information and apply it to help find out what worked for Billy Ray. My book recognizes that all disabled children are unique whether they have complex issues or not. It seemed more helpful to encourage parents in methods for determining what worked for their own child than to tell them what to do because it worked for my son.
Dr. Sanghavi is somewhat critical of the family for performing “their own clinical trials with a study population of two, or sometimes one.” That statement got under my skin more than the one that got to Susan Senator. As Dr. Sanghavi acknowledges there are not many larger studies to help doctors help parents. To make matters worse developmental disabilities are not taught extensively as a part of medical school. Parents must do their own investigation, sharing results with the doctor involved, of triggers, problem areas and what works for their own “snowflake”.
I don’t know where to come down on the vaccination and dietary issues. I highly respect the work done by Dr. Rimland and Autism Research Institute. I have devoured his materials and tried many of his suggestions. Again, complex children are unique. What works for one may not for another. The fact that they didn’t work for my son at the stage of his life when I learned of such things doesn’t mean they are not good suggestions for your child.
I agree with Susan that Autism is not a death sentence. It is a life changing experience. Nothing will be the same as we expected.
I was reminded of the article “Don’t Mourn for Us” by Jim Sinclair I read years ago and recently found again at http://www.autistics.us/library/dontmourn.html. Mr. Sinclair eloquently makes the point that when we grieve for our child who has Autism we are wishing that we had the child we hoped for (the perfect one that rarely exists) and want the Autistic one to go away. He states that without Autism the child would not be the same person as he is with Autism. According to Mr. Sinclair “Autism is a way of being. It is not possible to separate the person from the autism.”
See my recent post thanking Billy Ray’s birth parents where I compared his life to the classic movie “It’s a Wonderful Life”. Our mission, should we chose to accept it, will change our outlook on everything about life. As we accept our child for who he is and help him do what works best for him including but not limited to medical care, educational and home programs, a quality of life happens that cannot be described fully.
Until tomorrow,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Thursday, December 8, 2005
Wednesday, December 7, 2005
Complex Child/Messie Mom
In my October 31, 2005 post, Temperamental Mismatch, I talked about being a “messie” and how that bothers Billy Ray since Autism is a part of his life.
It is a Catch 22 of sorts. Billy Ray’s ability to tolerate clutter is reduced during times he is experiencing confusion or agitation for other reasons or even unknown reasons. When he is having a difficult time he generally sleeps less and requires even closer supervision. My energy level as well as my ability to spend enough time on household organization and cleaning is reduced during those times.
To the degree possible involving Billy Ray in the solution is the most desirable. When he is determined to march around the house to get rid of excess energy (I only wish he could share some of his energy with me), I am suggesting that we put one item at a time away. Maybe it is a paper or mail left on the breakfast bar. Instead of my following him while he marches around the breakfast bar, I suggest that we carry the papers to my office. We are involving him in all the household projects that he will participate in. For example, I bought a lightweight cordless vacuum from the Black and Decker outlet store. He is able to vacuum throw-rugs (sometimes with my hand over his hand to guide him). He may only have a tolerance to do one or two a day but it is progress. Billy Ray and I can unload and reload the dishwasher together.
As a “perfectionist messie” (see www.messies.com or multiple books by Sandra Felton including The New Messies Manual) it is hard for me to do small projects, I want to get it all done at once. Ms. Felton teaches “baby steps”. That is the only way it works for us. I am learning that I can sweep or mop the kitchen floor using the Swiffer type disposable dusting or wet clothes while I am making Billy Ray a bag of microwave popcorn. I can file one or two items from my desk while Billy Ray is on the toilet because I can hear him and see the bathroom door from my desk (my office is next door to the bathroom).
Billy Ray’s impulse control issues are a problem. He will throw things that are used for decoration or things that are out of place. My wonderful mother-in-law helps so much with this problem. Despite vision issues of her own, she made coasters out of materials that won’t hurt anyone or break WHEN (not if) he throws them and put them in a basket with a silk flowers woven around the handle. They are lovely on my coffee table, which makes me feel better and safe for Billy Ray.
Adapting is the key to this problem as well as other issues with Billy Ray.
Until tomorrow,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.ligthhouseparents.com
It is a Catch 22 of sorts. Billy Ray’s ability to tolerate clutter is reduced during times he is experiencing confusion or agitation for other reasons or even unknown reasons. When he is having a difficult time he generally sleeps less and requires even closer supervision. My energy level as well as my ability to spend enough time on household organization and cleaning is reduced during those times.
To the degree possible involving Billy Ray in the solution is the most desirable. When he is determined to march around the house to get rid of excess energy (I only wish he could share some of his energy with me), I am suggesting that we put one item at a time away. Maybe it is a paper or mail left on the breakfast bar. Instead of my following him while he marches around the breakfast bar, I suggest that we carry the papers to my office. We are involving him in all the household projects that he will participate in. For example, I bought a lightweight cordless vacuum from the Black and Decker outlet store. He is able to vacuum throw-rugs (sometimes with my hand over his hand to guide him). He may only have a tolerance to do one or two a day but it is progress. Billy Ray and I can unload and reload the dishwasher together.
As a “perfectionist messie” (see www.messies.com or multiple books by Sandra Felton including The New Messies Manual) it is hard for me to do small projects, I want to get it all done at once. Ms. Felton teaches “baby steps”. That is the only way it works for us. I am learning that I can sweep or mop the kitchen floor using the Swiffer type disposable dusting or wet clothes while I am making Billy Ray a bag of microwave popcorn. I can file one or two items from my desk while Billy Ray is on the toilet because I can hear him and see the bathroom door from my desk (my office is next door to the bathroom).
Billy Ray’s impulse control issues are a problem. He will throw things that are used for decoration or things that are out of place. My wonderful mother-in-law helps so much with this problem. Despite vision issues of her own, she made coasters out of materials that won’t hurt anyone or break WHEN (not if) he throws them and put them in a basket with a silk flowers woven around the handle. They are lovely on my coffee table, which makes me feel better and safe for Billy Ray.
Adapting is the key to this problem as well as other issues with Billy Ray.
Until tomorrow,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.ligthhouseparents.com
Tuesday, December 6, 2005
Parents Who Make A Difference
I showed Billy Ray’s support staff a video that I like because it is proof that all the documentation, schedules and visuals we do work and can make a difference in the life of a person with Autism and various special needs. I love that video done by Dan Hobbs called Gentle Teaching (available at http://www.nau.edu/ihd/positive/vids/video.html) because it gives me hope. I am in no way associated with the Positive Behavior Support Program at the Northern Arizona University but I wanted to give you that link. Mr. Hobbs shared the story of Amanda and his involvement in helping achieve her mother’s dream for Amanda
I recently read Eustacia Cutler’s book A Thorn in My Pocket (Future Horizons 2004) about her life as Temple Grandin’s mother. In case you don’t know, Temple Grandin, Ph.D. is a well known expert in Autism. She has authored numerous books including, but not limited to, Emergence: Labeled Autistic, Thinking in Pictures. Ms. Cutler struggled to help her daughter find her way despite a earlier time when services were not so prevalent. Dr. Grandin has been called a national treasure because for the first time society has been able to understand Autism from someone who experiences.
I have been devouring the writings of Sue Rubin recently. I just read where she said that facilitative communication was the key to her success and the key to success at facilitative communication was her mother’s persistence.
The above-referenced mother they kept on struggling. Not all parents do that for years on end to reach their best potential. Parents who do stay with the task make a major difference in their child’s life. You might say behind every successful disabled person is a parent with commitment.
Until tomorrow,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com
I recently read Eustacia Cutler’s book A Thorn in My Pocket (Future Horizons 2004) about her life as Temple Grandin’s mother. In case you don’t know, Temple Grandin, Ph.D. is a well known expert in Autism. She has authored numerous books including, but not limited to, Emergence: Labeled Autistic, Thinking in Pictures. Ms. Cutler struggled to help her daughter find her way despite a earlier time when services were not so prevalent. Dr. Grandin has been called a national treasure because for the first time society has been able to understand Autism from someone who experiences.
I have been devouring the writings of Sue Rubin recently. I just read where she said that facilitative communication was the key to her success and the key to success at facilitative communication was her mother’s persistence.
The above-referenced mother they kept on struggling. Not all parents do that for years on end to reach their best potential. Parents who do stay with the task make a major difference in their child’s life. You might say behind every successful disabled person is a parent with commitment.
Until tomorrow,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Monday, December 5, 2005
Documentation is Not a Dirty Word
Documentation seems overwhelming especially when you are chasing a busy complex special needs child. Just this morning I am printing out the summary that I create from the more detailed journal. It clearly shows the trial of a new medication not only didn’t help but worsened the problems. Two hours after taking the medication behaviors increased. It shows his changing behavior and similarities of when behaviors occurred so you catch triggers.
Billy Ray’s present psychiatrist and I work well together. It is not necessary for me to impress him that I know my son. However, when you are trying to get professionals in various fields to listen to you having this documentation system helps a great deal.
The documentation system I use is contained in Parenting Your Complex Child (AMACOM Books April 2006). When it comes out in April I will put the forms that I created to use for Billy Ray on my parenting website. As I make updates in my system or create new visuals they will be on the website for your use.
Until tomorrow,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Billy Ray’s present psychiatrist and I work well together. It is not necessary for me to impress him that I know my son. However, when you are trying to get professionals in various fields to listen to you having this documentation system helps a great deal.
The documentation system I use is contained in Parenting Your Complex Child (AMACOM Books April 2006). When it comes out in April I will put the forms that I created to use for Billy Ray on my parenting website. As I make updates in my system or create new visuals they will be on the website for your use.
Until tomorrow,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Saturday, December 3, 2005
Thanks to Billy Ray's Birth Parents
I starting writing this post Thanksgiving morning and struggled with whether to just go ahead and post it or to be honest about what our day turned out to be before it could be published. It seemed the best way to support parents and caregivers with their complex special needs children is to be honest about our experiences. Often parents feel so alone because they think no one can understand. That is because those of us with the most complex children can’t or don’t always share our experiences.
What follows is the post original started Thanksgiving morning:
There is something else I have wanted to say for all these years since Billy Ray’s adoption in 1984. I have contemplated how to do it so that it would get to the right people. Would an open letter to Billy Ray’s birth parents in the newspaper be actually seen by them in such a large metropolitan area if they are still there.
William (the middle name Raymond was added at adoption for my now deceased husband and we call him Billy Ray) was born in December 1982 in southern state. During that time, we were on a waiting list with a doctor in our state for a newborn child with Down Syndrome. The year and a half we were number one on waiting list did not bring us a baby. Abortion was a more common to mothers who had prenatal testing and realized they were carrying a child with Down Syndrome.
Since Billy Ray came to us at 15 months old, I have often thought of his birth parents who felt they could not handle his Down Syndrome. I have wanted to hunt them down and say thanks for giving society the blessing that he is and thanks for giving our family the joy and, yes the sorrow, which has made the joy greater. Billy Ray is so much more complicated than they could have known when he was born, experiencing the dual diagnosis of Down Syndrome and Autism plus bipolar and ADHD. Still he has joy in life and shares it with us all. I am so thankful his parents gave him a chance to experience life.
I realize the likelihood of Billy Ray’s parents ever seeing this is slim. Somehow, I just needed to express it anyway this Thanksgiving morn.
Since filing that post away for another day, we have had our challenges with Billy Ray including physical aggression.
A discussion about the classic movie It’s a Wonderful Life on one of local television programs the other day made me think about another wonderful life, Billy Ray’s life. In the movie, an angel takes George Bailey (played by Jimmy Stewart) around to many people and shows him how their lives would have been worse if George had never been born.
Raymond, my deceased husband, was changed dramatically by Billy Ray’s love for him. Because of his past experiences Raymond had difficulty relating to some people. During the last five years of his life Billy Ray became his reason to survive. Raymond’s older son said that Billy Ray was the best thing that ever happened to his Dad.
It would take a book by itself to explain the changes Billy Ray has made in my life. People frequently say how patient I am with Billy Ray. The truth is he has demonstrated a great deal of patience in teaching me what he needed me to be as his Mom. I am more tolerant and patient now than ever before but it is only because I have had the love of my son all these years.
The things that I share in my book Parenting Your Complex Child (AMACOM Books April 2006), my websites, this blog and the support that we have been able to offer other parents would have happened if Billy Ray hadn’t trained his Mom first.
He touches the lives of people unexpectedly. Former clients of mine with dementia who couldn’t remember me somehow remembered Billy Ray and he brought joy to them. Every week he delivers Meals on Wheels and touches people.
On behalf of all the people, Billy Ray has touched including but not limited to me, thank you to William’s birth parents for giving us this wonderful life.
Until tomorrow,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.ligthhouseparents.com
What follows is the post original started Thanksgiving morning:
There is something else I have wanted to say for all these years since Billy Ray’s adoption in 1984. I have contemplated how to do it so that it would get to the right people. Would an open letter to Billy Ray’s birth parents in the newspaper be actually seen by them in such a large metropolitan area if they are still there.
William (the middle name Raymond was added at adoption for my now deceased husband and we call him Billy Ray) was born in December 1982 in southern state. During that time, we were on a waiting list with a doctor in our state for a newborn child with Down Syndrome. The year and a half we were number one on waiting list did not bring us a baby. Abortion was a more common to mothers who had prenatal testing and realized they were carrying a child with Down Syndrome.
Since Billy Ray came to us at 15 months old, I have often thought of his birth parents who felt they could not handle his Down Syndrome. I have wanted to hunt them down and say thanks for giving society the blessing that he is and thanks for giving our family the joy and, yes the sorrow, which has made the joy greater. Billy Ray is so much more complicated than they could have known when he was born, experiencing the dual diagnosis of Down Syndrome and Autism plus bipolar and ADHD. Still he has joy in life and shares it with us all. I am so thankful his parents gave him a chance to experience life.
I realize the likelihood of Billy Ray’s parents ever seeing this is slim. Somehow, I just needed to express it anyway this Thanksgiving morn.
Since filing that post away for another day, we have had our challenges with Billy Ray including physical aggression.
A discussion about the classic movie It’s a Wonderful Life on one of local television programs the other day made me think about another wonderful life, Billy Ray’s life. In the movie, an angel takes George Bailey (played by Jimmy Stewart) around to many people and shows him how their lives would have been worse if George had never been born.
Raymond, my deceased husband, was changed dramatically by Billy Ray’s love for him. Because of his past experiences Raymond had difficulty relating to some people. During the last five years of his life Billy Ray became his reason to survive. Raymond’s older son said that Billy Ray was the best thing that ever happened to his Dad.
It would take a book by itself to explain the changes Billy Ray has made in my life. People frequently say how patient I am with Billy Ray. The truth is he has demonstrated a great deal of patience in teaching me what he needed me to be as his Mom. I am more tolerant and patient now than ever before but it is only because I have had the love of my son all these years.
The things that I share in my book Parenting Your Complex Child (AMACOM Books April 2006), my websites, this blog and the support that we have been able to offer other parents would have happened if Billy Ray hadn’t trained his Mom first.
He touches the lives of people unexpectedly. Former clients of mine with dementia who couldn’t remember me somehow remembered Billy Ray and he brought joy to them. Every week he delivers Meals on Wheels and touches people.
On behalf of all the people, Billy Ray has touched including but not limited to me, thank you to William’s birth parents for giving us this wonderful life.
Until tomorrow,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.ligthhouseparents.com
Friday, December 2, 2005
Maximizing Independence for Low Functioning Special Needs Children
Self esteem is important to all of us whatever our functioning level. It is important to note that low functioning children and adults pick up on our attitudes and it impacts their self esteem greatly. Little things that we may not even think about makes a big difference in how a task or attitude will effect a disabled person’s self esteem.
I cringe when I hear support staff say to Billy Ray “help me make your bed”. It is his bed and his job to do it to the degree he is able. The cue needs to be “it’s time to make your bed, I’ll help you if you need help.” There is nothing wrong with needing help. Taking ownership of his responsibilities instead of helping him gives Billy Ray the sense of needing to be taken care as opposed to being able to take care of himself with a little help. It has an definite impact on how he feels about a task. You can see it in his reaction to the task.
Considering the abilities of low functioning Autistic or other special needs person is an important first step to helping them feel good about themselves. When evaluating a task or activity allow your child to have the highest degree of independence reasonable for him. Allow him to feel good about himself for doing what he can do independently rather than more dependent than he needs to be. If he can participate in one part of an activity independently he can feel good about that one thing.
During the absence of his pediatrician Billy Ray was seen by the medical provider for my husband and myself. Since both my husband and I have arthritis I had discussed with her which of us was in better shape to carry 40 pound bags of pellets upstairs to the fireplace insert to heat of our former house. After meeting Billy Ray, the doctor asked why Larry and I were carrying the pellets upstairs when Billy Ray was part of the family. I had concern that he would lift wrong, etc. He is quite strong but doesn’t understand the concepts of picking up heavy items and also how to sit them down safely. After clearing the idea with his pediatrician when he returned, we created a three way team to deal with the problem. My husband would assist Billy Ray in picking up the bag of pellets, Billy Ray would carry them up the stairs where I would meet him to guide him through easing the bag to the floor by the fireplace. He took pride in knowing that he was doing something Mom couldn’t do and it hurt Dad’s back to do.
There is a tendency to be so protective of our disabled children that we don’t allow them to do what they can do. Everyone in the family needs to do what they can do. Your child will feel a part of the family if allowed to participate to the fullest degree he can as a team.
Until tomorrow,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com
I cringe when I hear support staff say to Billy Ray “help me make your bed”. It is his bed and his job to do it to the degree he is able. The cue needs to be “it’s time to make your bed, I’ll help you if you need help.” There is nothing wrong with needing help. Taking ownership of his responsibilities instead of helping him gives Billy Ray the sense of needing to be taken care as opposed to being able to take care of himself with a little help. It has an definite impact on how he feels about a task. You can see it in his reaction to the task.
Considering the abilities of low functioning Autistic or other special needs person is an important first step to helping them feel good about themselves. When evaluating a task or activity allow your child to have the highest degree of independence reasonable for him. Allow him to feel good about himself for doing what he can do independently rather than more dependent than he needs to be. If he can participate in one part of an activity independently he can feel good about that one thing.
During the absence of his pediatrician Billy Ray was seen by the medical provider for my husband and myself. Since both my husband and I have arthritis I had discussed with her which of us was in better shape to carry 40 pound bags of pellets upstairs to the fireplace insert to heat of our former house. After meeting Billy Ray, the doctor asked why Larry and I were carrying the pellets upstairs when Billy Ray was part of the family. I had concern that he would lift wrong, etc. He is quite strong but doesn’t understand the concepts of picking up heavy items and also how to sit them down safely. After clearing the idea with his pediatrician when he returned, we created a three way team to deal with the problem. My husband would assist Billy Ray in picking up the bag of pellets, Billy Ray would carry them up the stairs where I would meet him to guide him through easing the bag to the floor by the fireplace. He took pride in knowing that he was doing something Mom couldn’t do and it hurt Dad’s back to do.
There is a tendency to be so protective of our disabled children that we don’t allow them to do what they can do. Everyone in the family needs to do what they can do. Your child will feel a part of the family if allowed to participate to the fullest degree he can as a team.
Until tomorrow,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Thursday, December 1, 2005
Regrouping...It's Working...Yes!!!
Elation seems an inadequate word to describe the sense that you get when some trigger to difficult behavior becomes clear through your observation and documentation or find a new method that works better for your child. As I have been sharing with you Billy Ray is changing. We have been regrouping using the same system to design a new schedule and sequence within activities to find what might work best for him given recent changes.
We have been working on it just a few days. Already I’m beginning to see improvement in Billy Ray’s self esteem and comfort. For example, as I shared a few days ago, I did a visual showing the process required for Billy Ray to prepare his own breakfast. I modeled assisting him with the process to a concerned support staff who was concerned about Billy Ray getting burned (a valid concern). Sitting at the table with Billy Ray while he ate the meal he just prepared Ron said “you made your own breakfast”. The grin on Billy Ray’s face showed his staff the importance of the activity to his self esteem.
I listened to them going through the sequence in this activity this morning. Yes!! It worked. It was worth the effort on my part. Additionally it reduced stress for Billy Ray and everyone involved with his morning routine.
Until tomorrow,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com
We have been working on it just a few days. Already I’m beginning to see improvement in Billy Ray’s self esteem and comfort. For example, as I shared a few days ago, I did a visual showing the process required for Billy Ray to prepare his own breakfast. I modeled assisting him with the process to a concerned support staff who was concerned about Billy Ray getting burned (a valid concern). Sitting at the table with Billy Ray while he ate the meal he just prepared Ron said “you made your own breakfast”. The grin on Billy Ray’s face showed his staff the importance of the activity to his self esteem.
I listened to them going through the sequence in this activity this morning. Yes!! It worked. It was worth the effort on my part. Additionally it reduced stress for Billy Ray and everyone involved with his morning routine.
Until tomorrow,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com
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