Teens and young adults have this thing about parents’ cars even when they have their own. Why should a low functioning person with Down Syndrome and Autism be any different? Billy Ray has an old van (my former car which I kept when I bought a little station wagon several years ago). His support staff drives and they use it for his community activities. Billy Ray still loves to use Mom’s “station” every chance he gets.
This morning we have lots of snow. That makes the perfect excuse for him to borrow Mom’s car. The all wheel drive will be best to deliver Meals on Wheels to seniors. He saw my keys on the breakfast bar a little while ago. “Snow” he said, then “keys.” Yes Billy Ray you can borrow Mom’s car today.
It is nice to know that disabilities do not have to take away all the normal mother-son things.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.ligthhouseparents.com/
Wednesday, November 30, 2005
Tuesday, November 29, 2005
Unrealistic Expectations
We can get frustrated as parents when no one seems to understand our children. I spent years being defensive and angry with lack of understanding for Billy Ray. It felt like people who did not have clue what we experienced were judging Billy Ray and me.
One day in a conversation with a friend, I tried to explain why Billy Ray is often dressed well and I am in jeans with wet hair and no makeup when we get to church on a Sunday morning. Doing my makeup, hair and getting dressed before giving Billy Ray’s bath is a waste of time because he splashes water and I get lotions and toothpaste, etc. all over me getting him ready. Once he is ready to go, he thinks it is time to go. To make him wait too long for me to get ready will likely agitate him to the point he may flop on the floor in confusion or agitation and be unwilling to go out the door. Sometimes it is a choice to go without the primping I would like to do for my own appearance or to stay home.
I was hurt by her seeming lack of interest in my explanation. Later as I thought about the conversation, it was like a light dawning. How could she absorb what I was so laboriously heaping on her. Would I have been able to do that before Autism came into our life? Probably not.
During my husband’s recent visit to his sons in California, my consultant friend, Keddie, came over to spend the evening and night with us. She left the guest room door open because she said she wanted to get a better picture of what our nights are like. The next morning she told me that while the journal we maintain on Billy Ray’s computer show the times we are awake in the night she would never had realized what the nights are really like had she not come for the night. Keddie is a skilled consultant who has many years of experience with people who experience of variety of disabilities. If she needed to see it to grasp the bouncing, noise, and interrupted sleep how we expect the general public to comprehend it.
The same is true of professionals or people we meet in the community. They see our children as they are when they meet us. What we experience everyday alludes them because our children may behave one way in one environment and another way in a different place.
One of the biggest jobs we have as parents is to educate those involved with our children. It is just as unrealistic for us to expect them to understand as it is for them to expect our children to act in certain ways.
I just wanted to add too that the our children have a big job in educating us as parents. On occasion when I will instruct Billy Ray to be a little quieter in the morning he will say “I can’t”. My lack of understanding must frustrate him at times as much as society frustrates us as parents.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.ligthhouseparents.com/
One day in a conversation with a friend, I tried to explain why Billy Ray is often dressed well and I am in jeans with wet hair and no makeup when we get to church on a Sunday morning. Doing my makeup, hair and getting dressed before giving Billy Ray’s bath is a waste of time because he splashes water and I get lotions and toothpaste, etc. all over me getting him ready. Once he is ready to go, he thinks it is time to go. To make him wait too long for me to get ready will likely agitate him to the point he may flop on the floor in confusion or agitation and be unwilling to go out the door. Sometimes it is a choice to go without the primping I would like to do for my own appearance or to stay home.
I was hurt by her seeming lack of interest in my explanation. Later as I thought about the conversation, it was like a light dawning. How could she absorb what I was so laboriously heaping on her. Would I have been able to do that before Autism came into our life? Probably not.
During my husband’s recent visit to his sons in California, my consultant friend, Keddie, came over to spend the evening and night with us. She left the guest room door open because she said she wanted to get a better picture of what our nights are like. The next morning she told me that while the journal we maintain on Billy Ray’s computer show the times we are awake in the night she would never had realized what the nights are really like had she not come for the night. Keddie is a skilled consultant who has many years of experience with people who experience of variety of disabilities. If she needed to see it to grasp the bouncing, noise, and interrupted sleep how we expect the general public to comprehend it.
The same is true of professionals or people we meet in the community. They see our children as they are when they meet us. What we experience everyday alludes them because our children may behave one way in one environment and another way in a different place.
One of the biggest jobs we have as parents is to educate those involved with our children. It is just as unrealistic for us to expect them to understand as it is for them to expect our children to act in certain ways.
I just wanted to add too that the our children have a big job in educating us as parents. On occasion when I will instruct Billy Ray to be a little quieter in the morning he will say “I can’t”. My lack of understanding must frustrate him at times as much as society frustrates us as parents.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.ligthhouseparents.com/
Monday, November 28, 2005
Using Other's Experience to Adapt for Your Child
In her article KILLING AUTISM IS A CONSTANT BATTLE, Sue Rubin talks about the morning routine she experiences. She relates waking up screaming and the need to run around the house fast – impulses she can’t really control.
Literature relative to Autism and other special needs provide methods for working with our children. What I find the most helpful is articles like Sue Rubin’s and much of Temple Grandin’s work where they share what happens in a day to day experience. That understanding of why Billy Ray may behave the way he does rather than just what to do about it gives me something to build on.
In redesigning Billy Ray’s schedule this weekend, I thought about his apparent need to just run and pace in the morning. Instead of fighting it we just put a place for it in his schedule right after testing his blood sugar and taking some important medication. We encouraged him to put his walkman on and do his “circle” (running around the breakfast bar and through the kitchen and living room). This acceptance of his need to do this seemed to make him feel more comfortable. When he was finished, he was able to settle down and stay more focused on making his breakfast and the rest of the activities of his morning.
The writings of those who are willing to be open about their experiences makes such a difference in our ability to understand and adapt to our children.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.ligthhouseparents.com/
Literature relative to Autism and other special needs provide methods for working with our children. What I find the most helpful is articles like Sue Rubin’s and much of Temple Grandin’s work where they share what happens in a day to day experience. That understanding of why Billy Ray may behave the way he does rather than just what to do about it gives me something to build on.
In redesigning Billy Ray’s schedule this weekend, I thought about his apparent need to just run and pace in the morning. Instead of fighting it we just put a place for it in his schedule right after testing his blood sugar and taking some important medication. We encouraged him to put his walkman on and do his “circle” (running around the breakfast bar and through the kitchen and living room). This acceptance of his need to do this seemed to make him feel more comfortable. When he was finished, he was able to settle down and stay more focused on making his breakfast and the rest of the activities of his morning.
The writings of those who are willing to be open about their experiences makes such a difference in our ability to understand and adapt to our children.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.ligthhouseparents.com/
Saturday, November 26, 2005
Regrouping AGAIN...Day 1
Today was the first day of starting over to find out what is bothering Billy Ray and causing his increased agitation/aggression. I am exhausted but it seems important to share this process with you.Billy Ray was awake at 4:30 a.m. having fallen asleep early last night and only waking once during the night. We did get some sleep albeit in two parts. I am thankful for that.
Keeping him in his room so as not to wake up my husband, I put a movie on for him and sat reading his journal (on the computer in his room). It does appear that we have a conflict going on inside of Billy Ray that I suggested yesterday, he wants to be busier, is more confused than normal and is not physically back to normal from the health crisis he is trying to overcome.
I think I figured out at least one small thing that may help and created a visual for it.
I learned a hard lesson for our long time developmental pediatrician, Dr. Mary Lynn O’brien. That was to evaluate the risk in letting Billy Ray do an activity opposed to the loss in the quality of his life if he does participate.
His present support staff is a caring man who is very protective of Billy Ray. He is worried if Billy Ray comes near a hot stove he will get burned. That is certainly a risk.
In teaching Billy Ray to do as many independent tasks as possible I try to teach him to do them safely. See the above picture. It is not the best quality picture but I think you can see what I am saying. He is taught to hold onto the handle of the skillet while scrambling his eggs and to stand slightly back. He is able to do a pretty good job of it. His self esteem is enhanced by cooking his own breakfast. It is probably worth the risk of a burn, as long as we minimize the risk as much as possible.
I am sure this is not the only issue. I looked at the schedules before we moved (just before Christmas) and before he got so sick early summer. There is a long ways to get him back to normal for him. Baby steps and adapting will be necessary. Communicating with Billy Ray and with the professionals involved are also going to be needed.
We started again today. We will keep you posted how it goes.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Friday, November 25, 2005
Regrouping AGAIN...More Communication by Behavior
Yesterday was a contradiction in many ways. It started out by getting my grandma’s recipe for scalloped potatoes in the oven and making the stuffing for the turkey. I was thinking of what I am thankful for. When I got to a stopping point in dinner preparations I came into my office and started writing a blog post relative to something I have always wanted to express…my gratitude to Billy Ray’s birth parents for giving him life and placing him for adoption when they didn’t feel they could handle a disabled child.
Before I could finish that post Billy Ray’s behavior became difficult. Support staff was here with us but it took both of us to intervene when Billy Ray was throwing furniture, knocking things out of the china hutch, etc., etc. When that happens I invariably go through a period of feeling defeated and a failure at providing appropriate care for my beloved son. I wonder if I should be sharing any of my methods for working with Billy Ray if we still relapse. After feeling sorry for myself for a while, I know that the best I have to offer you is to be real about what we experience so that if you experience similar you will know you aren’t alone.
Billy Ray is more verbal than some complex children. However, when it comes to communicating his frustration or physical pain he is not able to “get it out” in a way that helps us to know what he is experiencing. Many times his behavior is the best indicator that something is wrong in his life. I wrote about this in two recent posts Communication by Behavior and Change is Coming.
When unusual behaviors occur when we think we have him stabilized it means we need to regroup. I talk to Billy Ray as though he could carry on a two-way conversation. I want him to feel a part of the solution for his own life. Yesterday, I told him that we are going to look at his schedule to see if it might be irritating or if he is hurting some place. I asked him to let me know in anyway that he can what is bothering him.
We try different things. Some work others don’t. For example, his psychiatrist suggested Omega 3 fish oils for his behavior which we did. When Billy Ray had some pretty severe behaviors a week and a half ago, his primary medical provider suggested that we hold the fish oil for a week to see if that was irritating his gastritis and causing him severe pain. With yesterday’s behavior it is clear that isn't the problem.
After events like this I read the journal again and sometimes twice. It is amazing how looking at events that happened before behaviors seem more clear reading about them a week later than the day they happen. Sometimes the trigger to a behavior is there and you wonder why you didn’t notice before. When you are in the midst of a behavior crisis it is hard to see things as clearly.
Sometimes it is his schedule, others times it is physical. He is demonstrating signs that it is physical and also that he wants to be more involved in activities. In my Change is Coming post I wrote that he is demonstrating by doing more things that he wants to be busier. On the other hand, he is demonstrating that something is wrong physically in several ways 1) he just can't get comfortable in his clothes and is wanting sweats on in the middle of the day (it is usually hard to get him to put them on just to sleep in), 2) he is more in a Mommie phase where he wants me to do everything for him every though he enjoys a lot of "buddy" activities with his support staff and his stepfather normally and 3) his behavior is more severe than usual (the most severe behaviors have occurred when something is physically wrong). I have spoken to all the doctors involved and we can't find anything. The two issues seem to be fighting each other: he wants to be busier but doesn't really feel like it not having totally bounced back from surgery this summer.
While I hope that Parenting Your Complex Child (AMACOM Books April 2006) will make day to day life much better for your child and the whole family, it is a continuing effort not a once done, always done.
In a way complex specials needs children such as Billy Ray are a contradiction. He needs exact sequence (order) in activities and consistency about his schedule but he does change without notice. We then must figure out what he wants changed and fix it. Billy Ray really is my best teacher but it takes close observation.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Before I could finish that post Billy Ray’s behavior became difficult. Support staff was here with us but it took both of us to intervene when Billy Ray was throwing furniture, knocking things out of the china hutch, etc., etc. When that happens I invariably go through a period of feeling defeated and a failure at providing appropriate care for my beloved son. I wonder if I should be sharing any of my methods for working with Billy Ray if we still relapse. After feeling sorry for myself for a while, I know that the best I have to offer you is to be real about what we experience so that if you experience similar you will know you aren’t alone.
Billy Ray is more verbal than some complex children. However, when it comes to communicating his frustration or physical pain he is not able to “get it out” in a way that helps us to know what he is experiencing. Many times his behavior is the best indicator that something is wrong in his life. I wrote about this in two recent posts Communication by Behavior and Change is Coming.
When unusual behaviors occur when we think we have him stabilized it means we need to regroup. I talk to Billy Ray as though he could carry on a two-way conversation. I want him to feel a part of the solution for his own life. Yesterday, I told him that we are going to look at his schedule to see if it might be irritating or if he is hurting some place. I asked him to let me know in anyway that he can what is bothering him.
We try different things. Some work others don’t. For example, his psychiatrist suggested Omega 3 fish oils for his behavior which we did. When Billy Ray had some pretty severe behaviors a week and a half ago, his primary medical provider suggested that we hold the fish oil for a week to see if that was irritating his gastritis and causing him severe pain. With yesterday’s behavior it is clear that isn't the problem.
After events like this I read the journal again and sometimes twice. It is amazing how looking at events that happened before behaviors seem more clear reading about them a week later than the day they happen. Sometimes the trigger to a behavior is there and you wonder why you didn’t notice before. When you are in the midst of a behavior crisis it is hard to see things as clearly.
Sometimes it is his schedule, others times it is physical. He is demonstrating signs that it is physical and also that he wants to be more involved in activities. In my Change is Coming post I wrote that he is demonstrating by doing more things that he wants to be busier. On the other hand, he is demonstrating that something is wrong physically in several ways 1) he just can't get comfortable in his clothes and is wanting sweats on in the middle of the day (it is usually hard to get him to put them on just to sleep in), 2) he is more in a Mommie phase where he wants me to do everything for him every though he enjoys a lot of "buddy" activities with his support staff and his stepfather normally and 3) his behavior is more severe than usual (the most severe behaviors have occurred when something is physically wrong). I have spoken to all the doctors involved and we can't find anything. The two issues seem to be fighting each other: he wants to be busier but doesn't really feel like it not having totally bounced back from surgery this summer.
While I hope that Parenting Your Complex Child (AMACOM Books April 2006) will make day to day life much better for your child and the whole family, it is a continuing effort not a once done, always done.
In a way complex specials needs children such as Billy Ray are a contradiction. He needs exact sequence (order) in activities and consistency about his schedule but he does change without notice. We then must figure out what he wants changed and fix it. Billy Ray really is my best teacher but it takes close observation.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Wednesday, November 23, 2005
Autism Acceptance and Cure
Today is one day I wish there was a way to upload the smell coming from our kitchen. Today is the day to make the yeast rolls my grandma taught me to make before I started school. I taught Billy Ray to knead the bread, probably far too young, because I was so anxious to pass along this tradition in my family.
As this day of family traditions in proceeding, I was thinking about a couple of articles I have read this week about acceptance of Autism versus the struggle find a cure, Sue Rubin’s article Acceptance versus cure and Susan Senator’s blog on The Autism Divide.
All this talk about cure for Autism creates a hope that it is possible and a yearning to do everything we can to bring it about for our child and every other child who struggles with Autism. At the same time our children are alive now and we want to accept them unconditionally and help them to be who they are. Today my son experiences Autism (and other things), that is who he is.
True acceptance is a hard to define. Accepting our child as a person who experiences Autism does not mean that you forget about trying to help him become the best that he can be or working towards finding a cure.
It is a balancing act between unconditional acceptance and wanting the very best for him, a cure for all his disabilities including Autism. I strongly believe that we as a society, not just parents of Autistic children, should do everything in our power to advocate and contribute financially as much as we can to research and seek a cure for Autism. At the same time we need to help our children achieve a life that is as comfortable and fulfilling an individual and to accept them as the individuals they are today.
Happy Thanksgiving,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
As this day of family traditions in proceeding, I was thinking about a couple of articles I have read this week about acceptance of Autism versus the struggle find a cure, Sue Rubin’s article Acceptance versus cure and Susan Senator’s blog on The Autism Divide.
All this talk about cure for Autism creates a hope that it is possible and a yearning to do everything we can to bring it about for our child and every other child who struggles with Autism. At the same time our children are alive now and we want to accept them unconditionally and help them to be who they are. Today my son experiences Autism (and other things), that is who he is.
True acceptance is a hard to define. Accepting our child as a person who experiences Autism does not mean that you forget about trying to help him become the best that he can be or working towards finding a cure.
It is a balancing act between unconditional acceptance and wanting the very best for him, a cure for all his disabilities including Autism. I strongly believe that we as a society, not just parents of Autistic children, should do everything in our power to advocate and contribute financially as much as we can to research and seek a cure for Autism. At the same time we need to help our children achieve a life that is as comfortable and fulfilling an individual and to accept them as the individuals they are today.
Happy Thanksgiving,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Tuesday, November 22, 2005
The Sky Is Not Falling...It Just Feels That Way
I shared my thoughts relative to the Supreme Court's placement of the burden of proof in two recent posts The Burden of Persuasion and Parents Have the Burden of Proof...What Else is New. I have been reading many comments on various blogs and in the media about this decision. I wanted to share one encouraging one with you. It was titled The Sky is Not Falling by Attorney Charles Fox, also the father of a disabled child, on Special Ed Law Blogs. I think you will find it informative and encouraging. I have this blog listed in my links (on the right side of this blog) because I found it informative and thought it would helpful to parents.
I was thinking about the title of Mr. Fox's post, the Sky is Not Falling. As parents disabled children everything seems more overwhelming to us than it might otherwise be. For example, yesterday we met with my son's county case manager and talked about the new Medicare prescription coverage. The process of exploring which insurance provider who works with that program that will work for my son's individuals needs seems a daunting task in light of other things I am trying to accomplish right now for my son and in my work.
In those of us who experience sleep deprivation because of our children's issues with sleep, even small problems seem major mountains when they might be molehills if we weren't dealing with others things at the same time. I wrote earlier the elation of success is higher because our children (and therefore parents) have to struggle harder for milestones. The same applies to problems and stresses, everything seems harder.
We can do this.
Until tomorrow,
Peggy Lou
www.parentingyourcomplexchild.com
www.lighthouseparents.com
I was thinking about the title of Mr. Fox's post, the Sky is Not Falling. As parents disabled children everything seems more overwhelming to us than it might otherwise be. For example, yesterday we met with my son's county case manager and talked about the new Medicare prescription coverage. The process of exploring which insurance provider who works with that program that will work for my son's individuals needs seems a daunting task in light of other things I am trying to accomplish right now for my son and in my work.
In those of us who experience sleep deprivation because of our children's issues with sleep, even small problems seem major mountains when they might be molehills if we weren't dealing with others things at the same time. I wrote earlier the elation of success is higher because our children (and therefore parents) have to struggle harder for milestones. The same applies to problems and stresses, everything seems harder.
We can do this.
Until tomorrow,
Peggy Lou
www.parentingyourcomplexchild.com
www.lighthouseparents.com
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