Hi Everyone:
Happy 4th.
I was thinking that probably many of us have loved fireworks and had to forego the tradition if our child experiences Autism.
As a child, it was great fun to go to my Grandma's in Weiser, ID because we could sit outside in her yard and watch the fireworks. It was a family tradition both for me and for Billy Ray's Dad. However, after we adopted Billy Ray we found he couldn't tolerate them at all. We thought it scared him. Since he didn't get the Autism label until later in his childhood than most we didn't understand that the noise is intolerable for many who experience Autism.
One year Billy Ray and I went to spend the day with my secretary and her family who were camping on the Oregon coast. They begged us to stay and see the fireworks from a ship on the ocean. I said that Billy Ray couldn't handle it. They told me that the noise was muffled by the water so I decided to try. We loved it. If you ever get a chance to try it for your child who can't handle the noise, it's worth the effort.
Until Next Time,
Peggy Lou Morgan
http://www.peggyloumorgan.com/
Friday, July 4, 2008
Comments - So Embarrassing
I just came on Blogger to write a post on fireworks and found I had 14 unapproved comments. I don't know why I haven't received notices on on them and some of them are really old. I am so sorry about that. I have been recovering from my little episode on New Year's Eve (see past posts) and finishing my book so I have gotten behind on blogging but normally Blogger sends me a notice when I have comments to approve.
When I was checking them off I came as approved and came to one I wanted to reject and when I clicked to reject just one it apparently rejected the ones checked. They have changed the system on me. If I rejected your comment accidentially I am sooooo sorry please comment again and I will watch Blogger better.
Until next time,
Peggy Lou Morgan
http://www.peggyloumorgan.com/
When I was checking them off I came as approved and came to one I wanted to reject and when I clicked to reject just one it apparently rejected the ones checked. They have changed the system on me. If I rejected your comment accidentially I am sooooo sorry please comment again and I will watch Blogger better.
Until next time,
Peggy Lou Morgan
http://www.peggyloumorgan.com/
Thursday, May 1, 2008
Frightening Realities
As shared previously I experienced a minor heart attack on New Years Eve. I am recovering slowly but the biggest issue has been getting and keeping my blood pressure stable.
There is nothing like a wake up call like I experienced to make you rethink everything about planning for a child or adult child with special needs. I will share more about that in my upcoming book Parenting An Adult with Disabilities or Special Needs which will be out in January 2008. I did want to share what happened yesterday.
As stated I am getting better everyday but somehow I am still a little nervous about being alone with Billy Ray for extended periods of time. I based that on the fact that I was feeling fine, watching the New Year celebration in New York on television when my husband when to bed at 11 p.m. Then at midnight the episode came out of the blue and I headed to the hospital in an ambulance. Thus, I feel pressure to have plenty of backup planning.
My husband is going to his daughter's graduation from college soon. It is about 3 hours away and he will will gone for two days. Friends of ours are going to be on call incase we need some help. They are true friends for Billy Ray but don't feel comfortable taking care of him for long periods of time.
Yesterday, I called the case manager to ask if I could give our friends his cell phone number the weekend my husband was going to be gone so that in the event of an emergency they could call him. It was my assumption that if something happened there would be "crisis beds" where Billy Ray could be placed temporarily in adult foster care until Larry got home or I was able to take care of Billy Ray again. He informed me that it would do no good to give the cell phone number to our friends. If something happened on the weekend or at night the police are to be called. They would pick Billy Ray up and put him in an adult nursing home.
That would be devastating to Billy Ray on multiple levels. First of all he freaks if a uniformed officer comes to the house. Once we had a "malicious child abuse complaint". An officer in uniform and a protective services worker came to the house. While the complaint was determined unfounded it still did damage to Billy Ray for a long tme. He thought that he was a "bad boy" and was going to jail. For years he and his deceased Dad had watched the television show Cops because it started out in our then city. The theme song "Bad Boys" has stuck in his head. Thus he believed he was going to jail and didn't understand the risk of being removed from me. He was frightened by that prospect for months afterward.
Secondly, a nursing home would not work for him even for a very short period because he requires one to one attention and would wander around. Additionally, his noise when he is confusion would like impact other residents.
That potential is very frightening. It means hastenng consideration of transition planning even if we can't get the most ideal situation for him. At least he would not have the risk of the above.
Until next time,
Peggy Lou Morgan
For a complete list of links to my other blogs and websites go to www.peggyloumorgan.com
There is nothing like a wake up call like I experienced to make you rethink everything about planning for a child or adult child with special needs. I will share more about that in my upcoming book Parenting An Adult with Disabilities or Special Needs which will be out in January 2008. I did want to share what happened yesterday.
As stated I am getting better everyday but somehow I am still a little nervous about being alone with Billy Ray for extended periods of time. I based that on the fact that I was feeling fine, watching the New Year celebration in New York on television when my husband when to bed at 11 p.m. Then at midnight the episode came out of the blue and I headed to the hospital in an ambulance. Thus, I feel pressure to have plenty of backup planning.
My husband is going to his daughter's graduation from college soon. It is about 3 hours away and he will will gone for two days. Friends of ours are going to be on call incase we need some help. They are true friends for Billy Ray but don't feel comfortable taking care of him for long periods of time.
Yesterday, I called the case manager to ask if I could give our friends his cell phone number the weekend my husband was going to be gone so that in the event of an emergency they could call him. It was my assumption that if something happened there would be "crisis beds" where Billy Ray could be placed temporarily in adult foster care until Larry got home or I was able to take care of Billy Ray again. He informed me that it would do no good to give the cell phone number to our friends. If something happened on the weekend or at night the police are to be called. They would pick Billy Ray up and put him in an adult nursing home.
That would be devastating to Billy Ray on multiple levels. First of all he freaks if a uniformed officer comes to the house. Once we had a "malicious child abuse complaint". An officer in uniform and a protective services worker came to the house. While the complaint was determined unfounded it still did damage to Billy Ray for a long tme. He thought that he was a "bad boy" and was going to jail. For years he and his deceased Dad had watched the television show Cops because it started out in our then city. The theme song "Bad Boys" has stuck in his head. Thus he believed he was going to jail and didn't understand the risk of being removed from me. He was frightened by that prospect for months afterward.
Secondly, a nursing home would not work for him even for a very short period because he requires one to one attention and would wander around. Additionally, his noise when he is confusion would like impact other residents.
That potential is very frightening. It means hastenng consideration of transition planning even if we can't get the most ideal situation for him. At least he would not have the risk of the above.
Until next time,
Peggy Lou Morgan
For a complete list of links to my other blogs and websites go to www.peggyloumorgan.com
Wednesday, April 2, 2008
World Autism Day
This morning I turned CNN on and discovered a program in process titled We Have Autism. We do have a tivo but I was not able to rewind to the beginning. Additionally, our satelite feed for CNN was not working well so I missed a lot with the fuzz. However, I loved what I saw and it struck me that it was very positive in terms of showing treatment and hope. There were none of the desperate feelings expressed in video such as Autism Speaks. This presentation gave real hope for meaningful lives for children and adults who experiene Autism.
A comment made by one of the mothers that once you become the parent of a child who experiences Autism you become a parent of all children who experience Autism really struck a chord with me. That has been my experience to a substantial degree. Once I became Billy Ray's Mom I found a deep concern for the acceptance and oppportunities for all children who experience special needs. We become one in so many ways.
I am thrilled that we have a World Autism Day. I hope that somehow we can spread that not just to Autism but to all who experience disabilities.
I am sorry I have been so delinquent in writing. I am physically improving from my New Year's Eve episode and getting stronger. My blood pressure is responding to medications. I am getting anxious to get out there speaking and meeting all of you again.
I will do an update on Billy Ray in the next day or so. Also on my writing and my new book.
Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting a Complex Special Needs Adult and Lighthouse Parents
Websites: Parenting Your Complex Child, Lighthouse Parents and Peggy Lou Morgan.com
Parenting Your Complex Child Yahoo Group
Monday, January 7, 2008
That Nagging Question Reappears
I have been working on my new book about transition planning. One of the chapters is titled That Nagging Question (what happens to my adult child after I'm gone?)
On New's Year Eve I started having breathing problems and had a horrifying ambulance ride. Needless to say no matter how prepared I thought I was that nagging question haunted me all night. They think I had a small heart attack and may have some blockage. As a result, I have been thinking more things through and making notes which I will share with you here as I can and in my new book.
At noon today I have a stress test and another test tomorrow. I will try to post how we are doing on my Lighthouse Parents Blog. If I end up having surgery my pastor is going to post on that blog to keep folks updated on how we are doing.
Until next time,
Peggy Lou Morgan
For a complete list of my sites go to www.peggyloumorgan.com
On New's Year Eve I started having breathing problems and had a horrifying ambulance ride. Needless to say no matter how prepared I thought I was that nagging question haunted me all night. They think I had a small heart attack and may have some blockage. As a result, I have been thinking more things through and making notes which I will share with you here as I can and in my new book.
At noon today I have a stress test and another test tomorrow. I will try to post how we are doing on my Lighthouse Parents Blog. If I end up having surgery my pastor is going to post on that blog to keep folks updated on how we are doing.
Until next time,
Peggy Lou Morgan
For a complete list of my sites go to www.peggyloumorgan.com
Friday, November 9, 2007
We're Still Here 11/09/07
While it may not seem obvious, because I haven't posted for a while, I am working on support for parents of adults with special needs. AMACOM Books has given me the go-ahead on a new book, tentatively titled The Never Empty Nest, which deals with adults. More to come on that later.
In my last post I talked about the importance of having someone to "hold the story". I mentioned one of my step-granddaughters who seems to have a close relationship to Billy Ray. Again, I want to say that he has good relationships with others in the family but this one just seems a natural. Elora is also older.
Elora was here for a long weekend so I got a chance to talk with her about my thinking that she would hold Billy Ray's story and what that would mean. She loved the idea and I thought showed great understanding of it. I noted that she involved Billy Ray in activities even more than usual. He is very responsive to her and it works well. Above are two pictures of them making ice cream punch together.
I am working on an article about teaching younger kids and adults to simplify housekeeping tasks using products like Swiffer. I will post a link here when it is on my website.
Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting a Complex Special Needs Child and Lighthouse Parents
Websites: Parenting Your Complex Child, Lighthouse Parents and Peggy Lou Morgan.com
Club Mom Articles
Parenting Your Complex Child Yahoo Group
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting a Complex Special Needs Child and Lighthouse Parents
Websites: Parenting Your Complex Child, Lighthouse Parents and Peggy Lou Morgan.com
Club Mom Articles
Parenting Your Complex Child Yahoo Group
Friday, September 28, 2007
Jean Baton Swindells Resource Center
Several months ago I got an email from the Swindells Center in Portland, Oregon asking me if I would consider speaking at one of their educational series events. What was followed was an exciting sense of finding a kindred spirit in this organization. We share a desire to enable the parent(s) to become the leader of their child's team not them into systems that may not work for their child as an individual.
Swindells Center was created because of a gift from Bill and Ann Swindells, whose daughter Jean experienced Downs syndrome. They supported the creation of the Center because they didn't wish other parents to experience the difficulty in finding resources that they had experienced. When I heard that I could so identify with that purpose because that's why I wrote Parenting Your Complex Child - not wanting other parents to go through the struggle we have.
Swindells' Director, Anne Saraceno, is bubbly and obviously full of energy. During dinner before my presentation last Tuesday, I could hear her total understanding of what parents experience and commitment to supporting a better life for the whole family who experiences special needs. I saw the same commitment and understanding in Mary Halvorson, Education Co-ordinator.
Swindells Center is housed in Providence Child Care Center which is a part of Providence Hospital . They also have centers in Medford, Oregon and Hood River, Oregon. To my delight, I learned that they will be opening a new center in Bend, Oregon near me sometime before the end of this year. I will post more details for those in this area as I learn opening date, etc.
One very helpful thing Swindells offer is a Life Care Notebook and Organizer free to Oregon parents and available to out of state parents for $20.
The loose leaf notebook contains a place to list your child's care needs, medical history, etc. It comes with dividers and a place for business cards. It is easy to modify according to what works for your child's information. If your child is older or has more intensive medical history it would be easy to insert a document similar to the Abbreviated Chronological History I do.
Mary shared with me that a Mom had been in training and completed the care notebook for her child. On the way home from the training she became very ill and had to be rushed to the hospital. She was able to hand the notebook to her husband, who had to work, so it could be used to care for her child. Without the notebook the child would probably have had to go to a medical foster home during the mother's hospitalization. With her care listed he or she was abled to be cared for at home with much less stress.
If you'd like to order this valuable tool you can call Swindells at 503-215-2429 or email Swindells@providence.org . You can also download it by clicking here for free. The advantage of ordering from Swindells rather than downloading is that they will send it in a wonderful binder/organizer and will be able to help you individualize pages to your needs. Additionally, they will register you to receive updated pages when available.
Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting a Complex Special Needs Adult and Lighthouse Parents
Websites: Parenting Your Complex Child, Lighthouse Parents and Peggy Lou Morgan.com
Club Mom Articles
Parenting Your Complex Child Yahoo Group
Swindells Center was created because of a gift from Bill and Ann Swindells, whose daughter Jean experienced Downs syndrome. They supported the creation of the Center because they didn't wish other parents to experience the difficulty in finding resources that they had experienced. When I heard that I could so identify with that purpose because that's why I wrote Parenting Your Complex Child - not wanting other parents to go through the struggle we have.
Swindells' Director, Anne Saraceno, is bubbly and obviously full of energy. During dinner before my presentation last Tuesday, I could hear her total understanding of what parents experience and commitment to supporting a better life for the whole family who experiences special needs. I saw the same commitment and understanding in Mary Halvorson, Education Co-ordinator.
Swindells Center is housed in Providence Child Care Center which is a part of Providence Hospital . They also have centers in Medford, Oregon and Hood River, Oregon. To my delight, I learned that they will be opening a new center in Bend, Oregon near me sometime before the end of this year. I will post more details for those in this area as I learn opening date, etc.
One very helpful thing Swindells offer is a Life Care Notebook and Organizer free to Oregon parents and available to out of state parents for $20.
The loose leaf notebook contains a place to list your child's care needs, medical history, etc. It comes with dividers and a place for business cards. It is easy to modify according to what works for your child's information. If your child is older or has more intensive medical history it would be easy to insert a document similar to the Abbreviated Chronological History I do.
Mary shared with me that a Mom had been in training and completed the care notebook for her child. On the way home from the training she became very ill and had to be rushed to the hospital. She was able to hand the notebook to her husband, who had to work, so it could be used to care for her child. Without the notebook the child would probably have had to go to a medical foster home during the mother's hospitalization. With her care listed he or she was abled to be cared for at home with much less stress.
If you'd like to order this valuable tool you can call Swindells at 503-215-2429 or email Swindells@providence.org . You can also download it by clicking here for free. The advantage of ordering from Swindells rather than downloading is that they will send it in a wonderful binder/organizer and will be able to help you individualize pages to your needs. Additionally, they will register you to receive updated pages when available.
Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting a Complex Special Needs Adult and Lighthouse Parents
Websites: Parenting Your Complex Child, Lighthouse Parents and Peggy Lou Morgan.com
Club Mom Articles
Parenting Your Complex Child Yahoo Group
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