It’s morning although somehow it doesn’t feel like it. Billy Ray was awake briefly at 11 p.m. and several other points where I was up with him briefly. At 4 a.m. he came into my bed for a while and then went back to sleep for a couple more hours.
It occurs to me that when I write blog posts after nights like this I need to put a warning: “Content written while sleep deprived”. Then in my goofy, sleepy mood I am thinking we need bumper stickers than say “under the influence of a complex child”. However, I am not sure anyone but another parent of a complex special needs child would understand what that means.
Last night while I was waiting for Billy Ray to go to sleep I was composing a letter to a media a person I hope will consider helping bringing to light the life of complex special needs children. In Autism in the News we said that much of the media coverage is about High Functioning Autism and other higher functioning disabilities.
It seems important to help society as a whole get a glimpse into our experience not so that they will feel sorry for us. Understanding will go a long ways to change acceptance in the community and maybe even remove change of the governmental illogics I talked about in yesterday’s post.
Domestic abuse in spouses and child abuse is understood more because we have heard about trials in the media and had movies made about it. Very few people understand what it feels like when your child or sibling beats you up because they are confused or agitated. We hear about parents of disabled persons who murder their children without enough detail to hopefully prevent future occurrences of such cases.
While watching several of the clips from the funeral of Coretta King yesterday it occurred to me we need leaders such as the Kings who will fight to bring to light the needs of our children to the those who can change conditions. Lawmakers have made steps to change laws to benefit our children but they can’t regulate community acceptance.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Wednesday, February 8, 2006
Tuesday, February 7, 2006
Government Illogics Are International
Kiralea in Australia has been writing about issues they are having getting funding to care for Jordan who experiences Autism. See http://jordanpowell.blogspot.com/2006/02/what-is-going-on-with-our-australian.html. I have been hearing from several in the United Kingdom that they are having difficulty getting their government to recognize the dual diagnosis of Down Syndrome and Autism so appropriate school and other programs are not available to the child.
Now it is happening to us AGAIN for the umpteenth time. In the United States a program called SSI (Supplemental Social Security Income) is available for disabled persons. Well somewhat available for disabled persons – it can be a struggle to demonstrate eligibility for some children and adults. It is not big bucks. The last time I knew it was about $500-600 a month.
I should clarify for those of you not in the U.S. that there is a difference in SSI and regular Social Security benefits. SSI is an entitlement based on disability not drawn on a claim that someone has paid into. Social Security benefits is based on a claim which some employee has paid into. For example, Billy Ray’s father was a state employee for 35 years so Social Security was withheld from his earnings.
Billy Ray has never received SSI because while my late husband was alive we had too much income. Then after his father’s death he drew as a survivor under Social Security. At 18 years old, he was declared disabled by the Social Security Administration. He still draws off the claim, which Raymond had paid into all those years, but it is now based on his own disability. He also gets Medicare (health coverage) through this claim including the new drug coverage. It is better than SSI monthly benefits but it is not nearly enough to support his needs which are not covered by other programs.
I will not go into detail about how the information was provided to us in the method most likely to upset me and therefore, Billy Ray, which it did. However, the state has now put Billy Ray on a list that means he should start paying a co-payment for his in-home supports which sounds like nearly 50% of his benefits. The reason for this is that he is not on SSI. The only reason he is not on SSI is because he draws on his father’s claim. Without that he would be SSI eligible.
The reality is that because of his special diets to try to keep his diabetes under control while dealing with the thyroid problems which are increasing his appetite and thirst, we spent more on groceries in the last month than the benefit from his Dad’s SS claim. In addition thereto we provide funds for his community activities including lunches out that he thrives on, his clothing needs which are extraordinary, diaper wipes, obsession about laundry that ruins machines, property damage, etc., etc.
Billy Ray is one to one care and supervision 24 hours a day 7 days a week. If he were placed in a facility in addition to the specialized type of facility it would be necessary to hire one on one staff round the clock. The figure of $20,000 per month has been thrown out regularly.
We do the visuals, create a schedule and environment that works for him and would be difficult for a facility with more than one resident to provide. Without it his behavior would be unmanageable. I closely supervise weekday support staff or provide direct care for him 24-7. Presently the budget for in-home supports during the weekdays is less than $5,000 per month.
If they jeopardize my ability to keep him at home, it would cost the state four or five times the amount they are presently paying to collect a few hundred dollar offset. In addition, because his behavior will be impacted by the difficulty of trying to create the customized environment that has taken us years to create and continual readjustment, he will require more medications with side effect risks and will be at risk of hurting someone else or being hurt.
Somehow that doesn’t seem good business sense even if you overlook the impact on Billy Ray.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Now it is happening to us AGAIN for the umpteenth time. In the United States a program called SSI (Supplemental Social Security Income) is available for disabled persons. Well somewhat available for disabled persons – it can be a struggle to demonstrate eligibility for some children and adults. It is not big bucks. The last time I knew it was about $500-600 a month.
I should clarify for those of you not in the U.S. that there is a difference in SSI and regular Social Security benefits. SSI is an entitlement based on disability not drawn on a claim that someone has paid into. Social Security benefits is based on a claim which some employee has paid into. For example, Billy Ray’s father was a state employee for 35 years so Social Security was withheld from his earnings.
Billy Ray has never received SSI because while my late husband was alive we had too much income. Then after his father’s death he drew as a survivor under Social Security. At 18 years old, he was declared disabled by the Social Security Administration. He still draws off the claim, which Raymond had paid into all those years, but it is now based on his own disability. He also gets Medicare (health coverage) through this claim including the new drug coverage. It is better than SSI monthly benefits but it is not nearly enough to support his needs which are not covered by other programs.
I will not go into detail about how the information was provided to us in the method most likely to upset me and therefore, Billy Ray, which it did. However, the state has now put Billy Ray on a list that means he should start paying a co-payment for his in-home supports which sounds like nearly 50% of his benefits. The reason for this is that he is not on SSI. The only reason he is not on SSI is because he draws on his father’s claim. Without that he would be SSI eligible.
The reality is that because of his special diets to try to keep his diabetes under control while dealing with the thyroid problems which are increasing his appetite and thirst, we spent more on groceries in the last month than the benefit from his Dad’s SS claim. In addition thereto we provide funds for his community activities including lunches out that he thrives on, his clothing needs which are extraordinary, diaper wipes, obsession about laundry that ruins machines, property damage, etc., etc.
Billy Ray is one to one care and supervision 24 hours a day 7 days a week. If he were placed in a facility in addition to the specialized type of facility it would be necessary to hire one on one staff round the clock. The figure of $20,000 per month has been thrown out regularly.
We do the visuals, create a schedule and environment that works for him and would be difficult for a facility with more than one resident to provide. Without it his behavior would be unmanageable. I closely supervise weekday support staff or provide direct care for him 24-7. Presently the budget for in-home supports during the weekdays is less than $5,000 per month.
If they jeopardize my ability to keep him at home, it would cost the state four or five times the amount they are presently paying to collect a few hundred dollar offset. In addition, because his behavior will be impacted by the difficulty of trying to create the customized environment that has taken us years to create and continual readjustment, he will require more medications with side effect risks and will be at risk of hurting someone else or being hurt.
Somehow that doesn’t seem good business sense even if you overlook the impact on Billy Ray.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Monday, February 6, 2006
Slogans
KC’s Mom found the mug I referenced in Saturday’s post that says “I survived the IEP”. Thanks Tina that is the one I had seen on the web.
When I was first drafting my manuscript my agent William Brown asked me to think of how I would explain my message if I were trying to put it on a mug, key chain, etc. I wrote the book but I never did come up with the slogan for mugs and key chains. Somehow the message of Parenting Your Complex Child seems too big to summarize in a slogan.
On the other hand, I love mugs and key chains that inspire me to keep on keeping on in some area of my life. I'm curious whether you fine that kind of thing helpful in reminding you to try new ideas. Looking at the link for mugs which Tina found my mind has gone back to slogans that might be useful.
My blogger friends are invited to join me in the pursuit of the perfect slogan. We could have fun with it and make it a contest. If I use your suggestion I will give you an autographed copy of Parenting Your Complex Child. Email me your suggestions or just leave them as a comment.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
When I was first drafting my manuscript my agent William Brown asked me to think of how I would explain my message if I were trying to put it on a mug, key chain, etc. I wrote the book but I never did come up with the slogan for mugs and key chains. Somehow the message of Parenting Your Complex Child seems too big to summarize in a slogan.
On the other hand, I love mugs and key chains that inspire me to keep on keeping on in some area of my life. I'm curious whether you fine that kind of thing helpful in reminding you to try new ideas. Looking at the link for mugs which Tina found my mind has gone back to slogans that might be useful.
My blogger friends are invited to join me in the pursuit of the perfect slogan. We could have fun with it and make it a contest. If I use your suggestion I will give you an autographed copy of Parenting Your Complex Child. Email me your suggestions or just leave them as a comment.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Saturday, February 4, 2006
Billy Ray Was Born Too Soon
I was talking with my friend, Irma, from Texas the other day. Our conversation stirred my thinking to the difference in what special needs children are offered now than what they were as Billy Ray was growing up.
I wonder if Billy Ray was in school now as opposed to when he started school would he be reading now? I remember so well trying to get the IEP team to accept that he could count to 14 and sight read some. Instead they wanted to put goals in the IEP for “sorting” various objects so that he would be able to work in a sheltered workshop as an adult.
If I had created the advocacy methods I used by the end of his education would he have gotten further in school. Probably. If only we could go back to the multi handicapped preschool and deal with what I call “only the dumb parent treatment”.
I recently saw a mug advertised on a website that said “I survived an IEP”. I wish I would have bookmarked that and shared the link with you but I didn’t. It does make the point that they can become a battle. When that happens the real victim is the child because nothing gets accomplished while the team is fighting.
It is my hope that the methods I learned a little late but share with you in Parenting Your Complex Child will help many of you avoid “only the dumb parent treatment” and become the rightful leader of your child’s team.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
I wonder if Billy Ray was in school now as opposed to when he started school would he be reading now? I remember so well trying to get the IEP team to accept that he could count to 14 and sight read some. Instead they wanted to put goals in the IEP for “sorting” various objects so that he would be able to work in a sheltered workshop as an adult.
If I had created the advocacy methods I used by the end of his education would he have gotten further in school. Probably. If only we could go back to the multi handicapped preschool and deal with what I call “only the dumb parent treatment”.
I recently saw a mug advertised on a website that said “I survived an IEP”. I wish I would have bookmarked that and shared the link with you but I didn’t. It does make the point that they can become a battle. When that happens the real victim is the child because nothing gets accomplished while the team is fighting.
It is my hope that the methods I learned a little late but share with you in Parenting Your Complex Child will help many of you avoid “only the dumb parent treatment” and become the rightful leader of your child’s team.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Friday, February 3, 2006
One Benefit of Creating a Community for Your Complex Child
We have talked about creating a community in several posts herein and in some of my speaking events. See She Isn’t Typical She’s Trisha for more detail.
I like to think of it as creating a small community within the larger community. Your child gets a chance to know those he meets regularly and they know him better than if you frequented several establishments of the same type. When there are problems he is accepted where he might be kicked out if they didn’t know how he is normally.
A good example of this happened Wednesday at Gordy’s Truck Stop, a restaurant in our little town of LaPine, Oregon.
We avoid going out when he is agitated and more likely to have behavior problems. Additionally, we have an as needed medication that can be used if we have to go out. It works pretty well to take the edge off when needed. However, Tuesday he was in a calm mood so we didn’t use anything and felt totally safe to take him to an early dinner.
Billy Ray chokes easily and when it does occasionally it can agitate him. He has from time to time thrown himself on the floor but he has never exhibited the out of control behavior in public that he does at home.
Wednesday he had a minor choking incident at Gordy’s and got irritated but not agitated. We aren’t really sure if that set him off or what it was. He started hitting me and got up knocking all the things off an empty table next to us, knocked over the chairs then threw himself on the floor. It took a while to get him out of the restaurant and made quite a scene.
I was humiliated by this experience, sure that he would be barred from Gordy’s forever. After we got him to the car, my husband stayed with him and I went back to apologize. The waitress was concerned that they had done something “because he is always so good”. She said that he is absolutely welcome to come back.
I called the owner the following morning to apologize again and he was just as understanding and accepting.
This acceptance even in such difficult times comes when the folks in the community relationships you have created know your child. They know that this is not the norm so are less likely to reject him if he has a bad time.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
I like to think of it as creating a small community within the larger community. Your child gets a chance to know those he meets regularly and they know him better than if you frequented several establishments of the same type. When there are problems he is accepted where he might be kicked out if they didn’t know how he is normally.
A good example of this happened Wednesday at Gordy’s Truck Stop, a restaurant in our little town of LaPine, Oregon.
We avoid going out when he is agitated and more likely to have behavior problems. Additionally, we have an as needed medication that can be used if we have to go out. It works pretty well to take the edge off when needed. However, Tuesday he was in a calm mood so we didn’t use anything and felt totally safe to take him to an early dinner.
Billy Ray chokes easily and when it does occasionally it can agitate him. He has from time to time thrown himself on the floor but he has never exhibited the out of control behavior in public that he does at home.
Wednesday he had a minor choking incident at Gordy’s and got irritated but not agitated. We aren’t really sure if that set him off or what it was. He started hitting me and got up knocking all the things off an empty table next to us, knocked over the chairs then threw himself on the floor. It took a while to get him out of the restaurant and made quite a scene.
I was humiliated by this experience, sure that he would be barred from Gordy’s forever. After we got him to the car, my husband stayed with him and I went back to apologize. The waitress was concerned that they had done something “because he is always so good”. She said that he is absolutely welcome to come back.
I called the owner the following morning to apologize again and he was just as understanding and accepting.
This acceptance even in such difficult times comes when the folks in the community relationships you have created know your child. They know that this is not the norm so are less likely to reject him if he has a bad time.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Thursday, February 2, 2006
Doctor-Patient Relationships and Documentation
I felt really affirmed by Billy Ray's medical provider, Brice Stanley, recently.
Yesterday he came in just before seeing Billy Ray to get a business card to give to another parent. It made me feel good to think he values the documentation methods so much he would suggest them to other parents.
Additionally, in a recent email he made comments about my documents which I think support the benefit of doing them. I also think they say a lot about Brice as a person and as a medical provider. I am sharing them here with his permission.
"I am excited to see** your son. Why? Because... despite the enormous challenge he presents each and every visit I find a unequalled satisfaction in seeing him trust me. I feel content to see your well-done behavioral logs that make my job so much easier. I also have a strange satisfaction in knowing that we have made some difference in his perception of daily quality of life when he smiles in the exam room."
"Each day that I see Billy I learn something new. A better way to communicate, or a more intuitive way to observe his behavior, or how important it is to read reports you bring. Each of these things presents a new challenge and satisfaction in my career. I look forward to seeing him because I get to partake in his well-being and LEARN at the same time."
In prior posts we have discussed the importance of the relationship with your child's medical provider. See Trusting Your Gut and Doctor-Parent Relationships and Developing the Right Doctor.
Until tomorrow,
Peggy Lou Morgan
Wednesday, February 1, 2006
Why Journal
In the imagined perfect world, you could walk into the office of a professional with your special needs child and they would have all the answers you need to your help your child. In the real world, that you and your child live in that is probably not the case.
I love the theme of this years Arc of Oregon conference “Get Real”. When I started writing my book I thought about calling it The Real World Your Child Lives In. Expectations of help and services can be very different from reality. Just because there are laws that grant services to your child doesn’t mean your child will get those services.
The U.S. Congress created the Americans with Disabilities Act (“ADA”) and the Individuals with Disabilities Education Act (“IDEA”). They did not necessarily fund the programs sufficiently to provide the services they mandate. A child must be proven eligible for specific services as well as able to benefit from a service.
In Doing Your Own Clinical Trials we quoted Kate Crow, Genetic Counselor from foreword to Parenting Your Complex Child (April 2006) that medical researchers don’t do many studies on “complex children”. We also shared that when asking several medical schools how much training on special needs patients medical students received the phrase “touched on lightly” was a frequent answer.
How do we wade through the frustration of getting help for our children. I will share my struggle and the approaches I created in detail in Parenting Your Complex Child. For now I want to share you with you the foundation of my system so that you can get a head start.
The foundation is the journal. It will include the quick notes – sometimes only one of two words to jog your memory because you are too busy to write much when your child is in a meltdown or you are involved in something else with him. Other times you will note observations in more detail when you are able to write.
It is like your study notes for a class in school. Your child is your professional and you are taking notes from his presentation. Because it is for your eyes only you can do it however you need to. The data gleaned from your journal can be used to demonstrate your child’s needs in documents for medical, educational, and governmental professionals. It can also be used for transitional planning and estate planning documents.
I like to say the journal is the detail. Presenting the journal itself to the busy professional does not work because it is too long for them to read in a short appointment. I create documents from Billy Ray’s journal that are in a format a busy doctor, for example, can absorb in short visits. I take the journal along so that if he or she has more specific questions than given in the summaries I provide we can refer to the journal for more detail.
The journal can be in any format that works for you. Billy Ray has a computer in his room and it is the one thing he doesn’t throw. He enjoys the screensaver pictures of his activities, family members and friends, etc. thus he is protective of “my puter”. I am able to keep the journal minimized on his computer at all times. When I am in his room while he is going to sleep, while he is dressing or other activities in his room, I am can make quick notes.
What to put in your journal depends on your child’s needs. If sleep is an issue track the naps and night sleep. If he suffers from constipation, etc. you could track bowel movements. Note any issues that a professional is likely to ask you about later.
Behavior issues are helped a lot by the journal. It will enable you to catch “triggers”. Note what was happened before a behavior, what the behavior actually looked like and how it was resolved. When you review the journal later you are able to see that if something was happening (for example, noise or unexpected visitors) it routinely triggers a behavioral. It will help you to avoid triggers to the degree possible and reduce some of the negative behaviors that result.
In a very real way you become the eyes and ears to help professionals understand and treat your child. In a recent email from Billy Ray’s medical provider he mentioned the importance of the documents I bring. I will share those with you tomorrow and hopefully get of a picture of Billy Ray and “my Dr. Brice” when he sees him this afternoon.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
I love the theme of this years Arc of Oregon conference “Get Real”. When I started writing my book I thought about calling it The Real World Your Child Lives In. Expectations of help and services can be very different from reality. Just because there are laws that grant services to your child doesn’t mean your child will get those services.
The U.S. Congress created the Americans with Disabilities Act (“ADA”) and the Individuals with Disabilities Education Act (“IDEA”). They did not necessarily fund the programs sufficiently to provide the services they mandate. A child must be proven eligible for specific services as well as able to benefit from a service.
In Doing Your Own Clinical Trials we quoted Kate Crow, Genetic Counselor from foreword to Parenting Your Complex Child (April 2006) that medical researchers don’t do many studies on “complex children”. We also shared that when asking several medical schools how much training on special needs patients medical students received the phrase “touched on lightly” was a frequent answer.
How do we wade through the frustration of getting help for our children. I will share my struggle and the approaches I created in detail in Parenting Your Complex Child. For now I want to share you with you the foundation of my system so that you can get a head start.
The foundation is the journal. It will include the quick notes – sometimes only one of two words to jog your memory because you are too busy to write much when your child is in a meltdown or you are involved in something else with him. Other times you will note observations in more detail when you are able to write.
It is like your study notes for a class in school. Your child is your professional and you are taking notes from his presentation. Because it is for your eyes only you can do it however you need to. The data gleaned from your journal can be used to demonstrate your child’s needs in documents for medical, educational, and governmental professionals. It can also be used for transitional planning and estate planning documents.
I like to say the journal is the detail. Presenting the journal itself to the busy professional does not work because it is too long for them to read in a short appointment. I create documents from Billy Ray’s journal that are in a format a busy doctor, for example, can absorb in short visits. I take the journal along so that if he or she has more specific questions than given in the summaries I provide we can refer to the journal for more detail.
The journal can be in any format that works for you. Billy Ray has a computer in his room and it is the one thing he doesn’t throw. He enjoys the screensaver pictures of his activities, family members and friends, etc. thus he is protective of “my puter”. I am able to keep the journal minimized on his computer at all times. When I am in his room while he is going to sleep, while he is dressing or other activities in his room, I am can make quick notes.
What to put in your journal depends on your child’s needs. If sleep is an issue track the naps and night sleep. If he suffers from constipation, etc. you could track bowel movements. Note any issues that a professional is likely to ask you about later.
Behavior issues are helped a lot by the journal. It will enable you to catch “triggers”. Note what was happened before a behavior, what the behavior actually looked like and how it was resolved. When you review the journal later you are able to see that if something was happening (for example, noise or unexpected visitors) it routinely triggers a behavioral. It will help you to avoid triggers to the degree possible and reduce some of the negative behaviors that result.
In a very real way you become the eyes and ears to help professionals understand and treat your child. In a recent email from Billy Ray’s medical provider he mentioned the importance of the documents I bring. I will share those with you tomorrow and hopefully get of a picture of Billy Ray and “my Dr. Brice” when he sees him this afternoon.
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Subscribe to:
Posts (Atom)
