Adapting and Re-Adapting

In my book, I talked about my struggle to communicate with Billy Ray. I was doing everything recommended by the various professionals and nothing was working. Here is a brief excerpt from that chapter:

“I was taking pictures of each step in an activity and writing text about each step. Some activities took more than one page. The consultant assisting us at the time would say, “You will lose his interest if they are too long.” So I shortened them and tried to “do it right,” but discovered he only responded to my detailed visuals that contained real pictures. Again, you must adapt to your child’s needs and responses, not someone else’s ideas.

“Eventually we got a scanner and Larry scanned everything, even old Polaroid pictures. We wrote stories about various events in Billy Ray's life such as the story of his adoption. These were called Billy Ray’s Stories. He loved having his stories read to him and seeing pictures of himself doing the activities. You have to do what works for your child, period.” Excerpt from Chapter 9, Two Essential Words: Communicate and Adapt, used by permission of the publisher from "Parenting Your Complex Child" by Peggy Lou Morgan © 2006 Peggy Lou Morgan, published by AMACOM, division of American Management Association, New York, New York. http://www.amacombooks.org/

Billy Ray may be more complicated than some of your children because he experiences medical issues combined with multiple special needs issues. However, I think the principle of today’s post applies to most children and adults who experience special needs. We, as parents, generally don’t have the luxury of continuing to do things for our children because it is the way we have always done things or because of some established program.

It has been necessary to write addendums to the Long Term Vision and Care Plan through our county case manager for the coming year’s funding for in-home supports. As I wrote it, it occurred to me that I am the one changing more than Billy Ray here. Adapting is not a once and for all times thing, at least for my son. Here is a cut and paste to the addendum for the care plan:

“If his mother, and primary caregiver, remains very aware of potential pain, intestinal issues (bowel regularity), changes in blood sugar, assuring that conditions in his environment are not such as to agitate him, etc., etc. Billy Ray is able to function with less of the extreme agitation (physical aggression and property damage) that he was experiencing in the last writing (11/6/06). However, it should be noted that his tolerance for pain, routine and environmental concerns has actually decreased. Mom must be on guard at ALL times to assure that these matters are addressed BEFORE they go into severe agitation or a meltdown. This balancing act requires constant vigilance on the part of the family.

“Community activities are more of a challenge presently. On the one hand, Billy Ray wants to go. On the other hand, he is experiencing a substantial reduction in energy level so major flexibility must be allowed so that he can go out when he is able. This makes scheduling regular activities much more difficult. The only vocational activity he continues to participate in is his Meals on Wheels delivery. He is able to maintain that route which he loves because his stepfather does it alone when Billy Ray is not able to participate. Billy Ray still participates probably 3 out of 4 weeks but it exhausts him sometimes for several days. He continues to do restaurant meals and trips in the car as he is able because these can be done without as much scheduling.”

Whether it is because of physical changes, development or other issues a child is experiencing the need to adapt and readapt is a sure thing.

We are adapting in another way too. We have frequently talked about Billy Ray’s skin issues. (See here on this blog and here on my website for more details on our skin care regime. ) Until recently they were not on his face. He has a heavy beard and shaving is at times a struggle. We talked with the pediatricians years ago about whether growing a beard might be a good answer. That recommendation was that we not do that for sanitary reasons. However, Billy Ray is now getting lesions on his chin and while he doesn’t get lesions under his chin, his neck is gets irritated very easily from the shaving. After discussion with his present PCP, Brice Stanley, we decided to grow a beard because shaving may be causing more problems than it cures.

However, following the advice of our then pediatrician we taught started shaving pretty early. She suggested that we make it fun by having family who would normally give Christmas and birthday presents (his birthday is near Christmas) give him various types of after-shave and supplies for shaving. That way we could find his preference. It worked. He loves Brut and uses it for after-shave and deordorant. Shaving is a part of his bath routine. Thus, we are doing a gotee and he is fine with that as long as he gets to shave and wear Brut. Here is a picture of our start:

I will post another one when he has grown it longer.

Keep Adapting and Re-adapting,
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 (under construction)

Club Mom Articles
Parenting Your Complex Child Yahoo Group

Being the "Mean Mommie"

We can’t take Billy Ray to the restaurants on his schedule right now. For example, on Thursdays he goes to the LaPine Inn following his vocational activities. He also goes to Gordy’s Truck Stop and the Mexican Restaurant here (spacing the name this morning). He has established good relationships with these places and is welcomed even if he is not always calm and quiet.

When he was diagnosed with Diabetes we backed off for a bit but started taking him once or twice a week to the places mentioned. His blood sugar was stable and we were given permission by his medical provider to give him a couple of events, limiting sugar and fat to the degree possible and adding more medicine if necessary. It has had little impact on his blood sugar since we resumed doing that.

However, now with the pancreatitus almost everything he has at the various places has too much fat. I have to check on the Mexican food as I am not sure about the fat content in what he orders but Gordy’s and LaPine Inn are out for a while.

For example, the LaPine Inn makes homemade French fries that you would die for. Tim, the cook and Vicky the waitress do everything they can to accommodate his diet but their French fries are as they are. I talked to Billy Ray about having a veggie burger and salad but he is so resistant to the idea at home that we dare not take him. He is likely to go into a meltdown or worse because he can’t understand no French fries.

It is more than the food Billy Ray loves, but the relationships he has established. Billy Ray sees me as “mean Mommie” right now. Sometimes being a responsible Mom feels really bad.

Until next time,
Peggy Lou Morgan
Amazon Blog
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Yahoo Group

Billy Ray is Amazing

Despite Pancreatitius, which is very painful, Billy Ray is anxious to maintain his activities. The rest of us would probably want to crawl back in bed – at least I would.

Overall he is doing well on adapting to his low fat diet. I think we are staying within the guidelines Dr. Masterangelo set for daily fat content though we are having to do substantial juggling.

This morning as I worked on magnets that say Adapt and Communicate to attach to the handouts from my presentation on Friday, I was thinking that sometimes I am more of a problem than Billy Ray. When he was diagnosed with diabetes I freaked because I thought I would never be able to adapt his diet to it. We have done quite well at that part. The low fat things is more of a challenge than the diabetic issues but he is adapting much better than I anticipated.

Once again, Billy Ray is my best teacher.

Until next time,
Peggy Lou Morgan
Amazon Blog
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Yahoo Group

Adapting to Low Fat Living

We are home. Billy Ray was discharged from the hospital yesterday. He is still pretty irritable because he is having a lot of pain from the pancreatitus.

Adapting to the low fat diet is working reasonably well all things considered. In addition to reading the books I found at Barnes and Noble, Larry and I went to the store to read labels and get what we could find. One example is adapting for grilled cheese sandwiches – a favorite of Billy Ray. We make it on whole wheat bread with very little reduced fat mayo, no fat cheese and instead of margarine, I found a fat free cooking spray and topping called I Can’t Believe It’s Not Butter. It is more like butter than those cooking sprays like PAM and it still has no fat. The bread is actually a little brown.

We took a look at his “usual” dinner that we had adapted to when he became diabetic. We had already switched him to brown rice from baked potatoes and garlic bread made from whole wheat and reduced fat margarine instead of white French bread. He always gets a chicken patty which says it has 12 mg. fat but he doesn’t usually eat but half of it anyway. I made grilled toast with the I Can’t Believe It Isn’t Butter spray, gave him half a chicken patty and brown rice.

Not bad adapting that much in just one day. I am proud of our progress.

There is one more reality to adapting Billy Ray to low fat diet - Mom and Dad have to change our lifestyle too. Forget about cooking our favorites like pork chops and chicken fried steaks. There is no way Billy Ray is going to understand Mom and Dad having what he can't have. We had to adapt to never having donuts or candy in the house when he became diabetic. The interesting thing about that was that I never really ate much candy and didn't miss it until I realized we couldn't have it in the house anymore.

It may take us a bit to catch up on our sleep so if I am not writing everyday please be patient.

Until next time,
Peggy Lou Morgan
Amazon Blog
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Yahoo Group

Thanks to Temple Grandin and Others Who Shared

It is another one of those mornings – the kind that used to totally freak me. Billy Ray has been yelling, bouncing and sometimes screaming for an hour. Sometimes it seems that my head sends off signals when I have a migraine and that stirs the reaction in Billy Ray (smile).

Yesterday I mentioned another mother’s reaction to her child’s noise in my Amazon blog. This morning listening to Billy Ray and trying to deal with my own headache I was thinking about the time when Billy Ray changed from a quieter child. As shared before, even the noise from an air conditioner or fan bothers me at times. Adjusting to the ear piercing sounds Billy Ray now makes has been an adjustment.

A search on Amazon this morning revealed 1,467 books for the key word Autism. That wasn’t the case when we first needed to learn about it. We found Temple Grandin, Ph.D. first in articles on Autism Research Institute’s website and then we found her books. I told Dr. Grandin that I felt like I had been educated in the school of Temple Grandin because it was the starting point in helping me to understand Billy Ray.

Eventually we found other writers who write about their own experience with Autism such as Sue Rubin and other writers who can share their personal experiences. The library on Autistics.org has multiple articles that are very helpful.

Billy Ray is not exactly like any of these writers but the insight they bring has helped me to get a glimpse into his thinking and needs. It has been the jumpstart we needed to get started adapting to Billy Ray.

This morning thinking about how much easier it is to tolerate Billy Ray’s noise and to work through it (figure out whether he needs something or just needs to get it out), I just felt like expressing appreciation to Dr. Grandin and all those who have shared.

Until next time,
Peggy Lou Morgan
Amazon Blog
http://www.parentingyourcomplexchild.com/
www.lighthouseparents.com
Yahoo Group

Life is What Happens..That You Didn't Plan

I am working on a post for Monday’s Amazon Blog on acceptance being a process. I don’t want to give away the post but I can’t resist sharing part of my mind’s ramblings with you today.

Billy Ray tends to have one movie at a time that he will watch over and over so I memorize them too (because I am in his bedroom while he watches as he goes to sleep). The one he is watching most right now is my old copy of Mr. Holland’s Opus with Richard Dreyfus. I loved that movie partly because it was filmed in Portland, Oregon, my hometown. Billy Ray loves it because of all the “oldies” songs and because he directs the orchestra with Richard Dreyfus (Mr. Holland).

In the movie Mr. Holland is singing the John Lennon song “Beautiful Boy” to his son. There is a line in the song that says “life is what happens to you, when you are busy making other plans.” I think that is true of most of parents of children with special needs.

Raymond and I did ask for a child with Down Syndrome when we adopted Billy Ray. Thus, I can’t say that his special needs were not a part of my “other plans.” However, I wasn’t prepared for him to experience ADHD, Bipolar and Autism. His experience of that has definitely changed our life. Had his experience been different I wouldn’t have had anything to share with you here or in my book.

I recently had some contact with Marty Omoto who shared how he went with his older sister as classroom assistant in her special education classes during junior and high school. Marty is now Director of California Disabilities Community Action Network. His sister’s experience surely had an impact on his career.

In her endorsement to my book Ruth Crist Sullivan, Ph.D. refers to her self as “parent-cum-professional”. Dr. Bernard Rimland, founder of the Autism Association of America and Director, Autism Research Institute is the father of Mark who experiences Autism. Charlie Fox, Special Ed Law Blogs, is the father of child with special needs and specializes his law practice on special education law.

I could give many more examples of people whose lives have been changed because of their relationship with someone who experiences special needs. Plans are changed and life takes on different meaning.

I can’t speak for anyone but myself. For me, being Billy Ray’s Mom has changed me to a profound degree.

Until next time,
Peggy Lou Morgan
Yahoo Group
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Amazon Blog

Adapting Activities and Programs

Just as not all persons without disabilities will be comfortable in a college environment, some children and adults with disabilities are not able to sit in a classroom or participate in a sheltered workshop. Some will need specially devised activities. Instead of complaining about how much is spent by school districts maybe it is time school districts and governmental agencies look at less expensive ways that things could be done to meet the person's needs without having to send them out of state or into ill fitting program.

This post is not intended to present what we do as appropriate for your child whatever his or her functioning level. Rather it is intended to give you a glimpse into the thinking process we use to adapt to Billy Ray's needs. He is out of school. When he was in school the Director of Special Education and I worked together to provide skills training and customize a program to Billy Ray's needs. This meant some community activities as well as at the School District Office.

It seems important to note that we did that after the school our district was sending Billy Ray to decided that they could not accommodate the structure that Billy Ray would need. Interestingly enough the structure we asked for was to bring Billy Ray out of the classroom part of the time to do activities within the school. Our school district would provide a one to one aide to enable him to do these activities but the program didn't feel they could accommodate it. The activities involved were things like greeting the school office staff, doing tasks like putting the chairs in the conferences rooms back after meetings, watering plants, playing basketball, etc. They were not activities that would have cost the program anything other than the one to one aide that would be required anyway. This could be in addition to appropriate (to him) academic skill building.


The activities we ended up creating included such things as putting away shopping carts in the Safeway parking lot. I mention this activity because it had several benefits which might not be obvious. It got him out of a sedentary environment, gave him a chance to be active which he requires, gave him the sense of accomplishment and most importantly, it helped to make him a recognized member of the community. It didn't take long for people who saw him putting away carts for 15-20 minutes three times a week to recognize Billy Ray when they saw him at the local restaurants or supermarket. It was a win-win situation for Billy Ray.

Billy Ray has funding for support staff during the week, part of which is from Vocational Rehab. Those funds would normally be used for a vocational program after school eligibility ends (usually 21 years old). Billy Ray would not be able to handle that type of program so he is allowed to use the funds for support staff and adapt activities to his needs.

As I am out and about getting use to our relatively new community my mind is always focusing on various businesses, organizations, leisure activities that might be appropriate to him. I have driven past the Humane Society in Bend (27 miles from us) several times. My mind keeps pondering volunteer activities or visiting the animals because he loves animals so much.

I like to take him into a new setting to test his reaction to the environment especially noise before I approach anyone about an activity for Billy Ray there. Yesterday was a case in point. We were in Bend for other reasons and had Billy Ray visit the Humane Society and Healing Reins (an organization which has horses as therapy for the disabled).
















As you can see in the pictures he is especially drawn to the cats and is eye to eye interacting with this one. The other picture is a visiting room that the Humane Society.

Billy Ray was quite comfortable with the environment at the Humane Society environment. We have ascertained that. The next step will be to contact the Society to determine if there are some volunteer activities Billy Ray and his support staff might be able to participate with. Additionally I will ask whether or not Billy Ray might actually interact with some of the cats in this wonderful visiting room.

These pictures are of Billy Ray's visit to Healing Reins. Studies have shown that interactions with horses are great therapy for persons who experience disabilities. Billy Ray loves horses and used to have two of them.








Presently he visits a horse named Cloud here in LaPine most weekdays and takes him a carrot. This has become a great experience for Billy Ray and for Cloud who was a little hesitant about visitors in the beginning. He now comes up to the fence to Billy Ray most days. I have previously posted a picture of Billy Ray and Cloud.



One thing that we always have to consider in creating a workable schedule and Billy Ray's activities is the absolute need for flexibility. He has only one activity a week that is necessarily firm as to time. That is delivering Meals on Wheels on Wednesdays. Billy Ray loves his interactions with the folks on his route and they him. However, it is an effort to assure that every condition is perfect for him to be willing to participate when he needs to go.

The tasks he does on other days have more flexibility. For example, he vaccuums the sanctuary at our little church. If he has a meltdown and needs time to become calm and responsive, sleeps late because he didn't sleep at night, has a doctor's appointment, etc. we can easily rearrange the time.

In comparing the two possibilities from yesterday (Humane Society and Healing Reins) there is probably more flexibility to go to the Humane Society whereas Healing Reins are scheduled classes. Another issue that we have to consider is cost factors. If we were able to work out volunteer activities or visits to the Humane Society it will likely cost nothing but the gas to get from LaPine to Bend. There is a cost involved with Healing Reins. In making those decisions you have to also consider which will be more satisfying to the person.

There are many ways to benefit both the person and the community (including the school and taxpayers) by being creative in customizing the life experiences provided to a person with disabilities. This is a glimpse in our method of operation presently. The key thing is Adapt and Communicate.

Until next time,
Peggy Lou Morgan
Parenting Your Complex Child Yahoo Group
http://www.parentingyourcomplexchild.com/
www.lighthouseparents.com
Amazon Blog

The Hard Part - Deciding When to Worry

We create all kinds of visuals and cues to help our kids know what to expect and answer the question “what’s next”. If only, there was some system by which our kids could let us know what is coming next, especially with their health. For me the hardest part of being Billy Ray’s Mom is the “what’s next?” question that I have when it is clear his behavior is about some physical problem not his schedule or environment.

We have dealt with health issues since the day of his adoptive placement at 15 months old. However, it has been mostly things like ear infections and viral things. He has been blessed with reasonably good health until the last few years.

The documentation system in Parenting Your Complex Child was created mostly to help adapt to Billy Ray’s needs for schedules, environment, and advocating for his needs. It is becoming more important to his medical needs than expressed in my book. We had not experienced this many medical issues at the time I wrote it.

This weekend we had things occurring that could just be the flu. On the other hand, the medical folks have been sort of watching gallbladder since this summer when Billy Ray had surgery for appenditius. I am always left wondering if this is something routine (cold, flu) or should I call the clinic.

I am so thankful that we have Brice Stanley, PA-C, as Billy Ray’s medical provider, because he doesn’t treat me as a worry wart. I know that he will explain things to me and that he will be very thorough with checking things out.

My husband keeps saying what we need is a computer system to hook Billy Ray up to – like they do cars. Then the computer would tell us when Billy Ray can’t what is going on with him. Any inventors out there?

Until next time,
Peggy Lou Morgan
Parenting Your Complex Child YahooGroups List
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

Billy Ray's Day...Tuesday..2/28/06

It has been one of those busy days for us. After a minor meltdown because he couldn't find some clothes he was looking for, we started our day at Central Oregon Radiology for an ultrasound of Billy Ray's thyroid.

Then we went to one of his favorite restaurants in Bend, China Sun - a Chinese buffet. I haven't taken him there in months because of his newfound diabetes diagnosis. His favorite thing is the Chinese donuts and I worried it would send his blood sugar through the roof. However, his blood sugar has been very stable lately and Brice Stanley, his PA-C, has told us to give him an occasional treat.



It's almost time for tomorrow's blog so I am going to give you a few sights of Billy Ray's day instead of try for something profound which I don't have to share tonight.

Our friend and consultant, Keddie Wanless, joined us at the Chinese buffet and snapped these pictures. Then she suggested we take Billy Ray bowling which he thoroughly loved.



Billy Ray and Ron bowling. He bowled a 90 the first time and 102 the second. That's better than his Mom ever does.



















Go in there!!


















Yes!!



















Goodnight everyone and for our east coast friends, good morning.

Until next time,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com

Reflections On How Far We've Come

It is late and an I am in one of those reflective moods again. It has been weird week, not entirely because of Billy Ray's issues. Our family is going through the kind of thing all families experience at one time or another in their lives whether or not they have a special needs child. It just seems to have come all in one week this time.

I wanted to lighten up a bit for the blog today and pertend I was Lori Miller Fox. In looking through the massive picture and visual files for Billy Ray for a picture I had in mind, instead I found myself reflecting on the stages of our life together as mother and son.

Too often we get so stressed by the present we forgot the fun moments. Here are a couple of those memories from our life together.

This little picture of Billy Ray in his crib always brings me so much joy. There is another picture taken the first day of his adoptive placement before his haircut that shows the transformation he made in the first day he was home. It is too old and worn to scan for you.

At fifteen months he didn't walk and was evaluated at about 4 months developmentally. Two months later he was running as if trying to catch up on life.

One year my attorney and Billy Ray's best buddy, Doug Harrison bought Billy Ray this race track. He loved to play with that toy more than any toy he has ever had. It is fun for me to see him being all boy before the Autism became more severe following a series of seizures at 14 years old.

We also did Challenger Little League. If you have a change to get your child involved in that program or just to go see a game it's something you won't want to miss. Challenger teams are little leaguers with various disabilities including children in wheelchairs and developmentally disabled children. Buddies from the other teams are assigned to assistant each Challenger team member. It is always a tie game and just for fun. Many team members will run to third base instead of first and receive just as much applause. It gives the kids a great sense of accomplishment as well as a lot of fun. Here is Billy Ray the "catcher" .

It is hard to imagine the mature young man delivering Meals on Wheels with his support staff, Ron below is the same little guy in the crib above.

You really have a come a long way Baby and I am so glad you let me come along with you.

Until tomorrow,

Peggy Lou Morgan

www.parentingyourcomplexchild.com

www.lighthouseparents.com

Some People Who Have Helped Billy Ray So Much

I have been thinking a lot about Mary Kimsey the past few days. Mary taught the structured learning center program Billy Ray attended for kindergarten through second grade. I can still hear her saying "these kids are not a job to me they are my life" in that first meeting we had.

Watching Billy Ray take his tee shirt off the other night I realized at 23 years old he still does that task the way Mary taught him. Despite the medication reaction that changed Billy Ray so much later in his life, he has retained much of the wonderful training he received in Mary's classroom.

In the picture he is at the front of the class with Mary. Each of the students were called to the board to find their name and repeat their address. This simple activity has had a profound impact on the rest of his life.

There have been other teachers in his life who have made a difference. Some of them have already been shared with you in other posts.

Chone Fields was Billy Ray's teacher only a part of seventh grade but her creativity has made such a difference not only in Billy Ray's life but also by enabling me to believe things could be better for Billy Ray. The activities she developed for him and her ability to help him feel a real part of the whole school increased his self esteem to a point I didn't know possible. I used a lot of her activities and ideas in trying to restart Billy Ray following seizures he experienced with the medication reaction. I wish I had a picture of them to share with you.

Heidi Ostrom had a special relationship with Billy Ray from their first meeting. That is demonstrated in the eye contact in this picture. Billy Ray doesn't favor many people with this intense gaze.

Heidi would be the first to tell you the program we created for Billy Ray was not perfect. This is partly because we came to her school district following a traumatic period in his life and he was experiencing multiple health problems the bulk of the time in her program.

Due to the struggle that was necessary to create a program for Billy Ray, Heidi and I spent a lot of time together. Now that Billy Ray is out of school I consider her our friend. As friends do we have disagreed from time to time but we have grown by working through those disagreements. Billy Ray is better because of what I have learned working with Heidi.

It was Heidi who gave me the Amanda's Story video we talked about in Parents Who Make a Difference and brought Dan Hobbs into our life. The video done by Dan
helped me to see that a lot of what we were already doing made a real difference. Dan (pictured playing with Billy Ray) helped me to see that we needed to have fun with Billy Ray and that he could still have relationships with others but needed our help to establish them. Dan worked with Heidi and me to create relationships with the folks at Silver Falls School District Office where Billy Ray went to do activities several times a week. Some of those folks are still on Billy Ray's mind though we live three hours a way now.

We have talked before about Mr. Koger. Every white western shirt and western slacks are still named "Koger" and there is not a day that goes by that we don't hear about "my principal". This two years after he is out of school.


There were many people in that school district Billy Ray became very fond of. It would take far too much space to picture and mention all. He still talks of them everyday.

My husband, Larry, will shoot me for including this picture but it shows the difference in Billy Ray's life he has made. Being a city girl I have not always enjoyed Larry's need to be out of the city. Billy Ray has bloomed with it. He loved mini farming from the time we met Larry.

It is a little hard to see from the picture but they are riding in an older John Deere Gator we had in our prior property. Billy Ray loved to go for rides down the back hill and all over the property will Larry. From "Dadgert" Billy Ray learned to appreciate the outdoors and it is special for them to do together. I may prefer to be in city but Billy Ray and his stepfather bloom out of it.


Kevin Loyd and Billy Ray had a special bond from the start. Kevin is probably the only employee Billy Ray ever selected himself. Kevin was hired to help with some projects on the property not to work with Billy Ray initially. However, Billy Ray was immediately attracted to his personality and the outside activities.

While Billy Ray has had other support staff who have made a difference the relationship with Kevin was unique. I think that it was because like Larry, Kevin is most at home working outdoors. Like Larry his only experience was being a pretty good Dad to his own kids who did not experience special needs.

I changed the title of this post to "some" because there is no way I can write about everyone who has made a difference in Billy Ray's life.

Until tomorrow,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com

Adapting...Doing What Works for Your Child

In Susan Senator’s book, Making Peace with Autism , I discovered a good example of adapting to what works for your child. Susan shared how her son Nat had experienced a meltdown at a family holiday gathering – he refused to go into a family member’s house. Thanksgiving was coming. She and her husband dreaded the likelihood of another meltdown ruining the holiday for the whole family.

The label Autism and the massive education that parents must experience once they get the “label” had not yet happened for Nat and his parents. However, Susan knew her son from observing his responses. Nat responded to books especially ones that told him what to expect out of an event. She wished there had been a book on Thanksgiving so Nat would know what to expect. She began making “crisis storybooks” which helped Nat to get through a family gathering without the insecurity and over stimulation that can ruin such gatherings for a family.

As parents of children with Autism and other complex special needs we often know what works by instinct and observation. In this example, Susan was using some of the basic purposes Carol Gray gives for her Social Story Program.

In Parenting Your Complex Child (April 2006) I shared that we were doing “floor time” as Dr. Stanley Greenspan recommends long before we heard the term. We were using the little program “Sweet Pickles”, advertised every time you turned on the car radio or television at the time of Billy Ray’s adoption. Sweet Pickles were activity cards to do with your preschooler. Some were about counting. Others were sorting by color, shape, and size. A new set of cards would come approximately every two weeks. We would work the new cards together a few times on the table or sitting on the floor together. After being sure, he understood the concept we applied it to everyday tasks. For example, we counted silverware as we loaded the dishwasher together. We talked about sizes and shapes doing laundry or grocery shopping, etc., etc., etc.

Susan shared how reading Temple Grandin’s books gave her confidence to trust her own ability to help her son. It is my hope that reading what other parents’ books will encourage you to trust your own instincts.

Saturday’s mail brought book jackets my editor sent me for my book. I was thrilled to see that they pulled a couple of lines from Kate Crowe’s Foreword to Parenting Your Complex Child for the back cover. “This book is so much more than a list of suggested responses to particular behaviors. It’s a detailed guide to understanding your child and building a place in the world for him or her from the ground up.”

Your child will respond differently to things than Billy Ray and Nat. It is my hope that by reading how Susan and I (or multiple other parents who write their experience in books and blogs) adapted life to our children’s needs you will feel empowered to adapt what works for your own child.

Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

Joy and Satisfaction, Sadness and Frustration

Life with a child or adult who experiences some form of special needs is one of extremes – joy and satisfaction, sadness and frustration. I understand why many see it as a tragedy because I used to feel that way. There was hopelessness of wondering what each new day would bring and being afraid to get up (as if there was a choice when my son wakes raring to go at various stages of moonlight and sunrise). Other nights when tucking Billy Ray in bed and having him say “I luv you Mommie” in the most precious little voice there is a sense of “okay this is going to work”.

In the post Autism the Other Member of the Family, Kristen refers to the "bottom of the barrel feeling", that nameless panic that comes over you all day long.” We have experienced years of that “bottom of the barrel feeling” with Billy Ray partially because he is so complicated that most of the professionals involved with him were as frustrated at trying to help him. I remember screaming “is there any hope for Billy Ray” from the back deck of our former house in the middle of the day when no one was home but me. It must have been really loud because I could hear deer running down the back hill.

Reading book after book that said do this or do that for Austim or ADHD or Down Syndrome or Bipolar (none of it worked for Billy Ray who has been labeled with all those diagnoses) began to make me more angry.

A combination of factors including returning to my faith, stubbornness, anger, and probably my infertility issues created a person that never existed in me before. Giving up was not an acceptable option to me. In that stubbornness I made a lot of foolish mistakes eventually starting all over again to find out what would work for Billy Ray and me. That process is shared in Parenting Your Complex Child, this blog and my websites.

Life has become one of reading signs and evaluating communication by behavior . We found out a lot about what was causing Billy Ray’s frustration with his life and changed everything that we could. This reduced his behavior. The sense of satisfaction at making a difference in Billy Ray’s life is as extreme as the “bottom of the barrel feeling”.

We are not allowed to stay at the elation of making things better for long. Something new has a way of creeeping up without warning. Communication by behavior is now primarily because of his changing medical issues. That doesn’t make it less frustrating to deal with.

Changing what we can, accepting what we can’t fix and praying for wisdom will likely be a part of our lives as long as Billy Ray and I are together. We probably will never be “fixed” but we sure are better and that is satisfying beyond description.

Until Monday,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

The Diversity Within Finding Understanding and Acceptance

You know what they say about smart minds think alike or something like that. Yesterday was one of those days where several of my favorite blogs and my email messages were thinking along the same lines. Most of us want to find understanding for our children who experience special needs but it is interesting the difference in the way we go about it.

According to my blog stats, there was a lot of visitors from a post on Neurodiversity’s weblog, One for the Times. In that post Kathleen Seidel is commenting on a book review by Polly Morrice for the New York Times on the book A Mind Apart by Susanne Antonetta. Kathleen found the review condescending toward people with various neurodiversities. I have not read the book A Mind Apart though I am eager to after reading Morrice’s review of it.

Kathleen writes: “Increasingly, many publicly assert that their lives are not overwhelmingly tragic, however great the troubles they or their families face due to their “off kilter traits.”

I wrote to Kathleen to thank her for links to this blog. Reading her reply, I stepped further on the soapbox I started yesterday before I read her blog and email. Kathleen wrote: “I hear from a lot of people who assume that the only parents who can feel good about parenting a kid on the autistic spectrum are ones whose kids are relatively "high-functioning." Thank you for making it so clear that that's hogwash.”

Society strives for excellence. There is nothing wrong with trying to be the best we can be. I want that for my complex special needs son, Billy Ray, as well. He will not be a Rhodes scholar and president like Bill Clinton but he has value to contribute to the world. He does not have to do the things road scholars do. He is entitled to have the opportunity to the best he can do.

In addition to the striving for excellence, there is a major striving to end all suffering. That is certainly an important effort. The problem is that disabilities which are preceived as suffering are not always understood enough to make informed choices. I am not talking about abortion here though some of the quoted articles reference that. There are many other choices to make relative to our children such as whether to bring them into our home, school programs, the effort we will put into their care and education, etc.

In The Problem With an Almost-Perfect Genetic World article in the NY Times 11/20/05, Andrew Imparato, president of the American Association of People With Disabilities, is quoted as saying “We're trying to make a place for ourselves in society at a time when science is trying to remove at least some of us.”

Susan Senator’s post Disability Baggage Check comments on the upcoming book A Different Kind of Perfect, by Cindy Dowling, Neil Nicoll, and Bernadette Thomas. Susan uses humor (which she does so well) to make the point about doctor’s who give their opinion along with the news that a newborn has one disability or another.

It seems important to remember that until the last decade or so large governmental institutions were home to a large percentage persons experiencing disabilities. The trend to close those institutions and bring their residents into the community is still evolving. Communities have not necessarily been familiar sure how to be accepting.

Even doctors and other professionals may not have had the opportunity to care for as many neurodiverse persons because they were not part of the average practice. I created the documentation system in Parenting Your Complex Child (AMACOM Books, April 2006) to help Billy Ray’s doctors see him as he really is before they treated him.

The more we as parents talk about our children, advocate for their needs and bring them out into the community (even the smaller community I recommend in Parenting Your Complex Child) the greater chance the winds of change will occur.

George F. Will, well known columinist and media person, writes of his son in Jon Will’s Aptitudes . The last line of his article comments that Jon was born on his father’s birthday and that he is the gift that keeps on giving.

Being Billy Ray’s Mom is without a doubt the greatest challenge of my life. However, being Billy Ray’s Mom is absolutely the greatest joy in my life too. I wouldn’t trade him what we have had together for the 13 kids (like my grandmother had) that I dreamed of.

Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

Getting the Message Out is Becoming More Urgent

We have frequently discussed the difficulty at finding understanding as parents of complex special needs children including the posts Unrealistic Expectations and Feeling Misunderstood . It is difficult for those not walking in our shoes to know how uncomfortable they can be.

How can we expect some mother who tells her son or daughter to go get dressed while she gets dressed to understand what it feels like to actually have both her child and herself somewhat dressed to go out. It felt so good to accomplish that on Sunday that I actually had Larry snap this picture of Billy Ray and me.

Public awareness is becoming more urgent. It is not just about the warm fuzzy of feeling understood by those in the community anymore. Times are tough worldwide. It seems every time we turn on the news there is something about how our state doesn’t have enough funding to keep regular education going. Fighting for care and education for our kids is much more difficult. Based on what I hear from Australia and the United Kingdom similar experiences occur there.

If society sees all of our complex children as Corky from Life Goes On or the Rain Man nothing is going to change for them. We need to communicate about our children in every possible way we can to everyone who will listen.

Advocating as described in Parenting Your Complex Child (April 2006) will help. I am not so naïve as to believe that is enough. We need to bring our children in the community so that they are known and accepted.

There is another issue, while difficult to bring up, that will make a difference. Parents need to unite. Frequently there is division between those who are doing “the diet” or “alternative” approaches and those who are just trying to do what works. We must stop fighting among ourselves so that we can unite to get the message out that our kids are people first and need acceptance and programs to help them.

Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

What He Does Today, He Expects to Do Always...No Matter What!!

Sometimes it is impossible to protect Billy Ray from himself. For example, yesterday he had three teeth pulled and some fillings as well. The dentist said he shouldn’t drink with a straw for two days. The sucking action could dislodge the clot and cause additional bleeding.

He does not need a straw to drink with. We use a glass with a lid because he tends to walk all over the house tipping the glass and leaving trails of juice. Thus, he routinely gets a straw in his glass. You don’t change routines with Billy Ray.

Billy Ray was probably communicating pain by his behavior as well; however, he became quite aggressive with support staff and with me when we tried to get him to drink his juice without a straw. No amount of explanation was going to work for him. We finally had to call the dentist to ascertain how serious the risk was if we let him use a straw. He said to go ahead.

We cannot change some things.

Peggy Lou Morgan
http://www.parentingyourcomplexchld.com/
http://www.lighthouseparents.com/

Billy Ray's Law...2/10/06

Billy Ray’s law is playing out again today. The dental office called a couple of days ago to say they had a cancellation and could get me in earlier if I could take an 8 a.m. appointment today. We knew that would mean we would leave soon after support staff got here at 7 a.m. to be with Billy Ray because we are out from Bend (where the dentist) is a ways.

I got up at 5 a.m. hoping to have time to curl my hair and get ready. I noticed that Billy Ray had kicked his comforter on the floor. I struggled a bit with the conflict of being a “good mother” by covering up my son or not having time to get ready for my appointment if he woke up. I lost the gamble. He woke up raring to get on with his day.

It occurs to me when I write about his sleeping late in the mornings some of you must think how lucky I am that he sleeps so late. As stated before the earliest day he wakes up is staff days off – the only day I could sleep in. What might not be clear is that he often wakes up several times in the night – generally at midnight at least and frequently at 3 or 4 a.m. as well.

If I meet you at a book signing or a convention somewhere this summer and my hair is curled and I have make-up on you will know that Billy Ray is not with me that trip. Somehow the time to get myself ready loses out to Billy Ray’s law pretty regularly.

Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

Billy Ray's Closet Cleaning and Shopping Trip

Billy Ray’s planned closet cleaning and shopping trip went very well. I am so grateful to Keddie Wanless and the folks at Corral West Ranchwear for making it successful.

As I have been sharing Billy Ray has gained so much weight because of thyroid issues, his recent diabetes diagnosis and a new medication for his bipolar. His clothes are like a security blanket – very hard to get away from him even if they don’t fit. There is no way to reason with him that they will no longer fasten.

I thought and practiced the lighthouse concept for several days about how to get the ill fitting things away from him without aggressive behavior. I thought about the way kids will do things for others when they won’t do it for their parents. I asked our consultant friend, Keddie to help.

We also know that if we take Billy Ray into a store with lots of attractive nuisances (meaning things that won’t fit or cost too much) or is unlikely to have what he wants we are asking for a meltdown or aggression in the store. Thus, my husband, Larry and I did a pre-shopping trip on Wednesday. We went to one Western store and discovered that they didn’t much selection of the part leather vests (like John Wayne in the movies) but they did have a lot of them that were fancy and far over our budget. Then we went to Corral West Ranchwear and found that they had much more of the type of things Billy Ray would be looking for.

During our pre-shopping Larry and I went to a leather outlet store in Sisters, Oregon which has all kinds of stuff for $20.00 or less. We bought a leather vest for $10.00 which he likes and a “cowboy hat” for $20.00 so we saved at least $70.00 by doing that and it also helped transition into today.

We can’t cram too much into his time between dinner and bedtime or he is up all night. Larry and I planned out dinner in advance and he put it together last night while Keddie and I went over everything in his closet with Billy Ray. I stepped back as much as I could and let Keddie work with him knowing that he might co-operate best with her. He agreed to removal of many ill-fitting or worn out items from his closet and they were carried out in boxes to be out of sight.

This morning he got up in a good mood, was delightful at breakfast enroute as we had promised him. It was wonderful.

At Corral West two sales people who were more than wonderful met us. Billy Ray really related to a young man in western attire who helped us a lot. We complicated their life a bit because we came after they have done inventory and they had to note everything but they took in stride.

The camera memory chip gave us the error message “card unreadable” so the pictures were all lost no matter what we do. I got several shots of Billy Ray looking the mirror while touching various items of clothing he was trying on. I so wanted to share that with you but it isn’t going to happen.

There have been two incidents of looking for things that were removed last night. In one instance we had a meltdown but I was able to redirect the situation after awhile. In another one, I told him what he was looking for had been taken to storage because it didn’t fit anymore why didn’t he look through his new things. He did and all was well.

What could have been a disasterous day worked because we throught, prayed and tried to understand what he needed to get the job done. Perfection NOT!! However, it was much smoother than it could have been.

Until Monday,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

Billy Ray's Law - Never Brag About How Good It Is Going

I forgot that another paragraph in Billy Ray’s Law is that when things are better I shouldn’t brag about it because the next hour it may all change.

Saturday morning was delightful. The blog post reflected the joy of that. We got a lot of things done in the morning and early afternoon – working together as we have often done.

Within a few hours we had more communication by behavior (agitation and aggression towards me). There are three potential causes. He had demanded more orange juice than we like him to drink which could have effected the gastritis/reflux problems. Possible dental pain because he was scheduled to have dental work before his health crisis this summer and ended up in the hospital. Both the dentist and medical provider wanted him to wait until he was more stable physically to have it done. It could be the clothing problems we wrote about earlier.

When we aren’t sure we do what we can to deal with all of them and continue observing. We cut his orange juice consumption on Sunday. We talked to him about the planned shopping trip for bigger clothes and that we would need to go through his closet and remove all the smaller clothes. We weren’t sure how he would tolerate that because he is so attached to his clothes. I did a lot of praying about it before I talked to him. He is very excited. Additionally, he has an emergency dental appointment tomorrow at 4 p.m.

It’s back to the idea of the serenity prayer and the lighthouse concept – change what we can and asking for guidance.

Next week, hopefully, we will have pictures on the blog of Billy Ray and his bigger clothes.

Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

Our Saturday Morning 1/21/06

Once in a while you have the kind of Saturday you hope for. Billy Ray slept to 8 a.m. this morning. Maybe he was tired from the night before. Whatever the reason I’ll take it.

He came to our room to get us. Apparently Larry had been up earlier and made coffee. It was special to be able to drink a little coffee while Billy Ray was focused enough to feed his dogs with his stepfather. That is a treat I don’t get everyday.

It is very satisfying to see Billy Ray proceed with his schedule that we have worked with him on for weeks. He marched into the bathroom. When he was done he washed his hands without cuing. Then to the breakfast bar to sit down while I gathered the equipment for his blood sugar test.

Blood sugar was great – 106. When we see our efforts to get his diet in order it is escalation because it can be difficult to keep him on his diet. I have been making diabetic biscuits and things to replace his favorite foods and he is eating them pretty well.

Presently he is doing his pacing routine with his walkman. After reading that Sue Rubin paces when she first gets up we just put it into his schedule instead of fighting him to sit down. It seems to help him to get it out. Larry is making his breakfast while I check email and greet my fellow bloggers.

The beauty of adapting procedures, schedules and environment to what works for your child is that sometimes you can have a morning like this. It is nice to say “yes this will work.”

I hope your weekend is going well.

Until Monday,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/