Part of a question from an interview I did recently has haunted me. It suggested that some might feel transition planning was letting go in the sense of giving up on an adult. I decided to chat with you in a video blog today about that. I am pasting the video below. Depending on what feed you are reading this post on it may not come through. If not, go to my video blog page here .
Until next time,
Peggy Lou Morgan
For a complete list of my sites see www.peggyloumorgan.com
Thursday, April 23, 2009
Monday, April 6, 2009
Our Latest News 4/6/09
Hi Everyone:
There is a lot going on right now and I have wanted to touch bases with you for a while.
First, Billy Ray is somewhat the same as when I last posted. He still fights chronic pancreatitis but we are learning to anticipate pain and catch it as early as possible so he doesn't need the stronger medications for pain. The surgery (Nissan) done in September 2006 which sort of fixed his high degree of acid reflex was checked last week and still in place but he is getting reflux again and it is the cause of periodic choking episodes.
He has good news and bad on the service dog front. The present service dog is experiencing health problems of her own and will have to be replaced within the next year. I have ordered a Yellow Lab puppy which he will get at the end of summer and we will start training her to work with him.
Parenting an Adult with Disabilities or Special Needs seems to be getting pretty good reviews already. I am truly pleased by them. Here are two: Autism Learning Felt and Specialchildrenabout.com .
Thanks to Amazon, I am able to combine the feeds for my blogs in one. If you'd like to read all the recent posts for this blog and Parenting a Complex Adult you can go to the Amazon blog and get them in one location.
Until next time,
Peggy Lou Morgan
http://www.peggyloumorgan.com/ for a complete list of sites
There is a lot going on right now and I have wanted to touch bases with you for a while.
First, Billy Ray is somewhat the same as when I last posted. He still fights chronic pancreatitis but we are learning to anticipate pain and catch it as early as possible so he doesn't need the stronger medications for pain. The surgery (Nissan) done in September 2006 which sort of fixed his high degree of acid reflex was checked last week and still in place but he is getting reflux again and it is the cause of periodic choking episodes.
He has good news and bad on the service dog front. The present service dog is experiencing health problems of her own and will have to be replaced within the next year. I have ordered a Yellow Lab puppy which he will get at the end of summer and we will start training her to work with him.
Parenting an Adult with Disabilities or Special Needs seems to be getting pretty good reviews already. I am truly pleased by them. Here are two: Autism Learning Felt and Specialchildrenabout.com .
Thanks to Amazon, I am able to combine the feeds for my blogs in one. If you'd like to read all the recent posts for this blog and Parenting a Complex Adult you can go to the Amazon blog and get them in one location.
Until next time,
Peggy Lou Morgan
http://www.peggyloumorgan.com/ for a complete list of sites
Joe Steffy, a Success Story
The story of Joe Steffy, who experiences the combination diagnosis of Down syndrome and Autism, is small business owner (Poppin Joe's Kettle Korn). See the full story here .
It is the classic example of what parents working with their adult child can accomplish. The parents did not believe the school district's assessment that Joe would never be able to be independent. Together they ascertained a future that would work for him, set about writing a business plan and getting a small grant.
I was anxious to share these links with my readers because it will encourage us all relative to what is possible for our own children and adult children.
By the way, I have just added the feed for this blog and Parenting a Complex Special Needs Child to my Amazon Blog so that you can read both at the same there.
Until Next Time,
Peggy Lou Morgan
For list of sites see http://www.peggyloumorgan.com/
It is the classic example of what parents working with their adult child can accomplish. The parents did not believe the school district's assessment that Joe would never be able to be independent. Together they ascertained a future that would work for him, set about writing a business plan and getting a small grant.
I was anxious to share these links with my readers because it will encourage us all relative to what is possible for our own children and adult children.
By the way, I have just added the feed for this blog and Parenting a Complex Special Needs Child to my Amazon Blog so that you can read both at the same there.
Until Next Time,
Peggy Lou Morgan
For list of sites see http://www.peggyloumorgan.com/
Sunday, April 5, 2009
Your Adult Child's Pursuit of Happiness - Who Will Design
Everyone seems to have an opinion about what will make your son or daughter happy in adult life. Unfortunately, some of it is based on what is most prudent for programs not on person centered planning.
Whether he is high functioning and can learn to self advocate or needs a more involved advocate he has a right to be totally involved in choosing a future that will make him happiest. You can help him on the journey to pursue what will be a happy life but he needs to be as involved in those choices as possible.
If at all possible start taking your younger child to I.E.P.'s so she starts to learn advocating from you and to have as much understanding of oppportunities for the future as possible.
In Parenting an Adult with Disabilities or Special Needs, I have included some exercises you could try together to help him demonstrate interest in specific plans. Hopefully, it will be helpful in jumpstarting the conversations between you.
Until next time,
Peggy Lou Morgan
for a list of my sites see www.peggyloumorgan.com
Whether he is high functioning and can learn to self advocate or needs a more involved advocate he has a right to be totally involved in choosing a future that will make him happiest. You can help him on the journey to pursue what will be a happy life but he needs to be as involved in those choices as possible.
If at all possible start taking your younger child to I.E.P.'s so she starts to learn advocating from you and to have as much understanding of oppportunities for the future as possible.
In Parenting an Adult with Disabilities or Special Needs, I have included some exercises you could try together to help him demonstrate interest in specific plans. Hopefully, it will be helpful in jumpstarting the conversations between you.
Until next time,
Peggy Lou Morgan
for a list of my sites see www.peggyloumorgan.com
Wednesday, March 18, 2009
Communication by Behavior (Reading the Signs) Revisited
This post is revisiting a topic I have covered several times in different ways since the beginning of this blog in 2005. It seems important to touch on it again because several parents have emailed about their frustration relative to their child’s behavior. A common line is “we are held captive to his behavior” or “it is impossible to plan anything because we never know she will respond”. Many want to know what medications Billy Ray takes or what medications will treat behavior problems with their child.
I am not anti medication but we use the very minimum necessary. I have found over the past 24 years of being Billy Ray’s Mom (he was adopted at 15 months old) that medication is a last resort for behavior issues. What works for us is reading the signs relative to his behavior. Two posts on this topic are Change is Coming – Reading Your Child’s Behavior and Reading Signs in my Complex Son. There are many others under the label Communication by Behavior.
When you allow your child to show you what he needs to feel safe and comfortable and adapt his environment, schedule, etc., etc. as close as possible to his comfort level life becomes much more comfortable for him and for the whole family.
Some have written that it is not fair for one member of the family to have things his way. I do understand that feeling. For me, it came to a point that I learned what Billy Ray can and cannot incorporate or understands. His logics are not mine. If he is confused by an aspect of the routine or environment we can get stuck and ruin a day or even longer periods of time. By doing things the way that he can understand or accept, it changes the flow of whatever we are doing. If that means we have to do things differently than another member of the family wishes but we will not get stuck it might well be worth it, depending on the situation.
Others have written that they don’t have time for the documentation, etc. suggested in Parenting Your Complex Child. My response is that being stuck with meltdowns or behavior issues takes more time than we realize. When we learn to read the signs, adapt to the child’s needs and communicate the child as he or she is to the professionals involved, it changes family life as well as the child’s. It takes time and initially a lot more energy than we might think we can muster but in the end it saves time, energy and frustration. It is really a choice of how you will spend your energy and that of your child and how much frustration you can cope with.
As aside, I am not keeping the blogs up the way I want, slower to answer email and moderate comments because I am getting more email and comments these days. I have decided that is partly my fault because many of the things I would respond is already on the blogs but hard to find because it has been archived by date. I changed the blog template today and am in the process of labeling every old post by categories. If you have any suggestions or comments please let me know.
Until next time,
Peggy Lou Morgan
For a list of my blogs and websites see http://www.peggyloumorgan.com/
I am not anti medication but we use the very minimum necessary. I have found over the past 24 years of being Billy Ray’s Mom (he was adopted at 15 months old) that medication is a last resort for behavior issues. What works for us is reading the signs relative to his behavior. Two posts on this topic are Change is Coming – Reading Your Child’s Behavior and Reading Signs in my Complex Son. There are many others under the label Communication by Behavior.
When you allow your child to show you what he needs to feel safe and comfortable and adapt his environment, schedule, etc., etc. as close as possible to his comfort level life becomes much more comfortable for him and for the whole family.
Some have written that it is not fair for one member of the family to have things his way. I do understand that feeling. For me, it came to a point that I learned what Billy Ray can and cannot incorporate or understands. His logics are not mine. If he is confused by an aspect of the routine or environment we can get stuck and ruin a day or even longer periods of time. By doing things the way that he can understand or accept, it changes the flow of whatever we are doing. If that means we have to do things differently than another member of the family wishes but we will not get stuck it might well be worth it, depending on the situation.
Others have written that they don’t have time for the documentation, etc. suggested in Parenting Your Complex Child. My response is that being stuck with meltdowns or behavior issues takes more time than we realize. When we learn to read the signs, adapt to the child’s needs and communicate the child as he or she is to the professionals involved, it changes family life as well as the child’s. It takes time and initially a lot more energy than we might think we can muster but in the end it saves time, energy and frustration. It is really a choice of how you will spend your energy and that of your child and how much frustration you can cope with.
As aside, I am not keeping the blogs up the way I want, slower to answer email and moderate comments because I am getting more email and comments these days. I have decided that is partly my fault because many of the things I would respond is already on the blogs but hard to find because it has been archived by date. I changed the blog template today and am in the process of labeling every old post by categories. If you have any suggestions or comments please let me know.
Until next time,
Peggy Lou Morgan
For a list of my blogs and websites see http://www.peggyloumorgan.com/
Thursday, February 5, 2009
If Only I Could Be More Like My Son
Looking at Billy Ray, now 26 years old, this morning I was thinking if only I could be more like him. He is full of life and dressed in slacks, white western shirt, and blue sport coat wanting me to help him with his belt and tie. That’s been his favorite attire since this little picture at 3 years old. On the other hand, my attire this morning consisted of a warm bathrobe, slippers.
Everyday is an adventure from the time he arises in the morning until his eyes finally close at night. While I am trying to get my acid reflux meds down and survive until I can have coffee to get my eyes working to do his blood sugar test and read my email, Billy Ray is raring to begin his day. If only I was more like my son.
I love the piece by Dr. Dennis McGuire of the Adult Down Syndrome Center in Park Ridge, Illinois, called If People with Down ’s syndrome Ruled the World. Things would surely be different if that were the case. Take a look at it here – hopefully it will give you a chuckle and a better understanding of people who experience Down’s.
Until next time,
Peggy Lou Morgan
For a complete list of my sites http://www.peggyloumorgan.com/
Everyday is an adventure from the time he arises in the morning until his eyes finally close at night. While I am trying to get my acid reflux meds down and survive until I can have coffee to get my eyes working to do his blood sugar test and read my email, Billy Ray is raring to begin his day. If only I was more like my son.
I love the piece by Dr. Dennis McGuire of the Adult Down Syndrome Center in Park Ridge, Illinois, called If People with Down ’s syndrome Ruled the World. Things would surely be different if that were the case. Take a look at it here – hopefully it will give you a chuckle and a better understanding of people who experience Down’s.
Until next time,
Peggy Lou Morgan
For a complete list of my sites http://www.peggyloumorgan.com/
Monday, January 5, 2009
Don't Worry, Be Happy
I was struggling with what to title this post. Technically, I had written some of what this post covers in a prior post; however, there have been lots of news about program cuts, etc. and I felt like I needed to post again. The title I might of used sounded like the prior post. This title kept coming to mind. Can't remember if it was a song or a commercial but I remember it was a slogan from a few years ago.
In his recent program Geraldo Rivera called “The Waiting List”, Geraldo at least twice mentioned that he has been hearing folks talk about returning to institutionalizing people with disabilities. In a video on his Fox News website Geraldo talks about why he made this program and he also provides clips from his famous expose` on the Willowbrook. You can view that video by clicking here.
I know that news and talk about budget cuts is scary. The anxiety of “the nagging question” of what happens to our children when we are gone is why I wrote Parenting an Adult with Disabilities or Special Needs. With the concerns expressed by Geraldo and others we need to be proactive in terms of having people who will understand your adult child’s needs and be strong advocates when your voice is less available to your adult child.
There are things you can do in the meantime to protect your adult child. Instead of being stuck in anxiety over what might happen to your child, expend that energy on planning for him.
Some adults with disabilities are high enough functioning they could live independently but still need someone to check in occasionally. Generally, that service is provided by semi-independent living programs. If funding for those services were cut you could easily have a backup from your church or circle of friends. Instead of worrying about what might happen, think about who could provide a piece of what your child needs. It is amazing how much relief comes from being proactive rather than worrying.
Until next time,
Peggy Lou Morgan
Author of Parenting Your Complex Child (AMACOM Books 2006) and
Parenting an Adult with Disabilities or Special Needs (AMACOM Books January 2009)
http://www.peggyloumorgan.com/ for a complete list of websites and blogs
In his recent program Geraldo Rivera called “The Waiting List”, Geraldo at least twice mentioned that he has been hearing folks talk about returning to institutionalizing people with disabilities. In a video on his Fox News website Geraldo talks about why he made this program and he also provides clips from his famous expose` on the Willowbrook. You can view that video by clicking here.
I know that news and talk about budget cuts is scary. The anxiety of “the nagging question” of what happens to our children when we are gone is why I wrote Parenting an Adult with Disabilities or Special Needs. With the concerns expressed by Geraldo and others we need to be proactive in terms of having people who will understand your adult child’s needs and be strong advocates when your voice is less available to your adult child.
There are things you can do in the meantime to protect your adult child. Instead of being stuck in anxiety over what might happen to your child, expend that energy on planning for him.
Some adults with disabilities are high enough functioning they could live independently but still need someone to check in occasionally. Generally, that service is provided by semi-independent living programs. If funding for those services were cut you could easily have a backup from your church or circle of friends. Instead of worrying about what might happen, think about who could provide a piece of what your child needs. It is amazing how much relief comes from being proactive rather than worrying.
Until next time,
Peggy Lou Morgan
Author of Parenting Your Complex Child (AMACOM Books 2006) and
Parenting an Adult with Disabilities or Special Needs (AMACOM Books January 2009)
http://www.peggyloumorgan.com/ for a complete list of websites and blogs
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