Parenting A Complex Special Needs Child

Parenting developmentally disabled children will always be a special challenge. It need not be a nightmare. In addition to meeting the usual parenting challenges, parents of disabled children face a gauntlet of added obstacles that can try the resolve and resources of even the strongest families. But navigating the complex medical, educational, occupational, and social issues can be made easier with the right information.

Friday, July 04, 2008

Fireworks and Autism

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
www.peggyloumorgan.com

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
www.peggyloumorgan.com

Wednesday, April 02, 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 07, 2008

Update 1/07/08

Some of you have written wondering what is going on with us.

Billy Ray is doing pretty well and I have been trying to finish my new book on transition planning. However, that all changed on New Year's Eve when I started having breathing problems.

After a terrifying ambulance ride I spent the rest of New Year's Eve and most of New Year's Day in the hospital. The doctors think I had a small heart attack and may have some blockage. I have a stress test scheduled for today at noon and another test for tomorrow. If they find blockage I will have to have surgery.

In the meantime, if you want to keep track of how we are doing you can go to Lighthouse Parents Blog . I will try to keep that one up. If I do end up having surgery my pastor is going to put notes on that blog to keep people up to date.

Until next time,
Peggy Lou Morgan
For a complete list of my sites go to www.peggyloumorgan.com

Tuesday, November 27, 2007

Politics and Parenting a Special Needs Child

This post is not intended to endorse one Presidential candidate or another. Perhaps more than any other election since I first voted I am torn about what stance to take. I would like to hear from my fellow bloggers and readers what you consider in deciding who you will vote for.

There are so many issues. Each of us has reasons as to why certain ones will take priority for us individually. For example, as a Christian woman who has experienced infertility issues abortion is high on my list. However, I am very concerned about terrorism this time too.

In our little berg, which has just become a City, I worry about forest fires but felt safer from terror threats. That is until recently someone attempted to sabotage a train carrying hazardous material very close to our home. Fortunately, protection measures had been set in place. A rail car was ahead of the train carrying the hazardous material and caught it. The train was able to stop before derailing. The same type of thing was tried a couple of weeks later at another nearby town.

This past weekend the news reported that Hillary Clinton is planning to seek additional funding for Autism research if elected President. I have been trying to explore what the other candidates have to say or their records relative to programs relative to disabilities. I have not been able to find much information. On the other hand, is that a reason to support a candidate that we might have other concerns about?

There is so much to consider in this election.

Until next time,
Peggy Lou Morgan
For a complete list of my other blogs and websites go to www.peggyloumorgan.com

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

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Tuesday, August 14, 2007

Memory Video - Comic Relief

I haven't been able to post video since I wrote last because I have an ugly infection just below my eye. I can't use makeup for probably a week. I have notes written ready to post several as soon as I can. In the meantime, here is a funny video that we can all identify with especially if we have been in survival mode with our kids for a while. It was forwarded to me by a friend and there is no copyright information or information about who it is.

video

8/18/07: As you can see someone has left a comment that this is Tom Rush. The song, The Remember Song, is performed by Tom Rush and written by Steven Walters. This video is also on his website . I wrote to Tom's website and they have given me permission to leave the video up. According to their email it is on YouTube and has been viewed over 3 million times. I think that is because we can all identify with the sentiments of it.

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

Sunday, August 05, 2007

News from Our Homefront

Most important news is that Billy Ray seems to be doing better physically. His gastric surgeon started him on some medication that seems to be helping his intestinal issues a lot. Additionally, his primary has been treating his sinus and yeast infections with a variety of things and we finally seem to have turned the corner there.

AMACOM Books has just agreed to publish my second book. They do not like my title so I will not mention it until the Title Committee gets to play with it for a while. The book is about adults with special needs. It will include transition planning, creating an adult life that works for the individual, and some on estate planning. More news to follow, as we know it.

My stepson once said of his now deceased Dad and me “it’s 1992 and my parents just got a VCR”. I have been behind the times with computers and other technology forever.

Fortunately, I seem to be surrounded by people who know more than I do and are patient teachers. My husband, Larry, is a bit self taught as I am but seems to get this technical stuff so much better than I do. Both of his sons have helped in many ways. Michael has helped me to figure out Power Point and Mark helped to use my favorite planner (Franklin Planner) with a Palm Pilot. My literary agent and even my pastor have lots of computer, internet knowledge and are great helpers. That being the case one has to wonder why I go into the computer age kicking and screaming as I do (smile).

We have been looking at uploading video to my websites for a long time but it was complicated because the website host didn’t store it. You had to have separate entities involved. Recently I noticed an upgrade from my website host that makes uploading of video to my websites as easy as uploading pictures which I have finally mastered. Thus we have been doing some practice video blogs and have created a page on my newest website to put them on. On that page there will be links to video posted on other sites as I do them.

In the meantime, Pastor Richard, has been playing with video on his own blog and uploaded last Sunday’s message this week. Following his lead, I practiced on my Lighthouse Parents Blog with some footage we had shot of Billy Ray’s enthusiastic greeting of folks during Friendship and Worship time at church. You can see it here. Thus, we will be able to do video blogs right on my regular blogs. I hope to begin doing that this week.

One of my colleague blogger/authors took some flack for having things unrelated to special needs on her blog. I understood her desire to be known as she is and also the frustration someone might feel if they were searching for help on special needs and found personal things about the writer. Thus, I have decided to do a personal video blog on my new website, which will include some things that are not directly related to Billy Ray or special needs. No video has been posted there but will be very soon. I am excited to be able to just turn on the camcorder and chat with all of you.

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