Reasons for Actions

Billy Ray has been busy lately. As I wrote here he is changing. I am not sure whether it is his improved medical health or maybe the exit from puberty but in some ways we have the Billy Ray we knew before his seizures at 14 years old.

As stated before my son is my best teacher. As I have been working with him more because of his recovery and our lack of support staff, I see even more clearly how focused he is and that almost everything he does has a purpose.

Presently, he has lots of energy and a desire to be busy. He loves to do housekeeping things, probably from doing things together since he was a toddler. His intolerance of clutter these days is actually increasing since I wrote Temperamental Mismatch. Sometimes he can’t even stand to have things in drawers in dressers or the coffee table (except his own I might add). He seems to be taking over the house when we allow it.

We have created a to do list for us to work on together but it includes movie breaks for him. We put a small tv-vcr-dvd combo in my office so that I can work while he is taking a movie break. I have been working on a long overdue project. He can’t stand for me to leave it laying on my work table when we go back to working on projects together. At first, I thought it was the clutter then I realized he had a method to his madness. My worktable is a computer table that also holds the printer-fax and a monitor hooked to his old computer (which I am transferring files from). The screensaver for his old computer is his picture file. The monitor that is hooked up to it is one of those high resolution flat screen ones my husband recently inherited from his stepfather. The other day after he was agitated until I put my project away from that worktable, I looked over and saw that he was pulling the chair up to it and intently watching the pictures on the screensaver. That project would have been in his way because he had elbows on the table.

Another example of his focus or communication was his intolerance of towels placed in the dresser in the guestroom. We don’t have a linen closet in this house and very little drawer space in the bathroom. I was putting towels for the bathroom in the guestroom dresser. That dresser was one I purchased for Billy Ray several years ago because it was supposed to have drawers that he couldn’t pull out. It didn’t work well for him and he had taken to knocking furniture over at that point. I was afraid he would get hurt so we removed it to the guestroom and found some plastic bins two to a rack and bought three racks as a substitute dresser. They adapted well to him for quite a while. However, after multiple rewashing of the towels he pulled out of the now guestroom dresser and either threw on the floor or put in the hamper, we realized he wants that dresser in his bedroom again. Sometimes I think I am the slow learner. He clearly focused on the goal.

Obviously we can’t allow him to take over the house which he clearly would do. We have to set limits such as what’s in the master bedroom belongs to Mom and Dad and he may not go in there or remove anything without our permission. He is a visitor in my office and may not rearrange my papers. However, I have noticed that when my desk top gets more piles all of a sudden my garbage gets fuller. I am inspecting the garbage before it goes out and working on reducing my desktop piles. The irony of it is he’s right. He and I are both less stressed when my desk is clear. Again, he is my teacher.

Apparently Billy Ray is not the only one who has a reason for what he does. I loved the interview on CNN’s Anderson Cooper 360 with Amanda Baggs who experiences Autism. She had reasons for many of the things she does. Dr. Sanjay Gupta wrote of her in his blog:

“She taught me a lot over the day that I spent with her. She told me that looking into someone's eyes felt threatening, which is why she looked at me through the corner of her eye. Amanda also told me that, like many people with autism, she wanted to interact with the entire world around her. While she could read Homer, she also wanted to rub the papers across her face and smell the ink. If she saw a flag blowing in the wind, she might start to wave her hand like a flag. She rides in a wheelchair, she says, because balancing herself while walking takes up too much energy for her to also type and communicate. To an outside observer, the behaviors would seem eccentric, even bizarre. Because Amanda was able to explain them, they all of a sudden made sense. In case you were curious, there is no possible way that I was being fooled. Amanda, herself, was communicating with me through this voice-synthesis technology.”

The key to adapting seems to be finding the reason for the action. It is hard work sometimes to find it but it makes all the difference for all of us in the family environment.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting a Complex Special Needs Adult and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom Articles
Parenting Your Complex Child Yahoo Group

Intolerance Abounds

The television was on this morning as I walked by to get Billy Ray’s pills. Diane Sawyer, Good Morning America was talking about a story they had done yesterday and the poll they took from viewers.

Apparently, a three year old started crying boarding an airplane. Neither of her parents were able to get her to stop. You can read the article here. Nothing was said about the little girl doing anything but crying or having special needs of any kind. The parents were instructed to make her stop and were eventually kicked off the plane because they couldn’t.

What is more shocking to me than the airlines behavior (deplorable as I find it) was the poll taken by GMA. Of 26,586 votes approximately 62% said they agreed that the family should be kicked off the plane if they couldn’t make the child quit. With this kind of intolerance is it is any wonder people with disabilities have to fight such discrimination and intolerance. What have we become as a community?

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting a Complex Special Needs Adult and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom Articles
Parenting Your Complex Child Yahoo Group

Maybe a Better Question re the Pillow Angel

Friday night’s Larry King Live discussion centered around a family who had surgical and hormonal treatment for their daughter, Ashley, now 9 years old, to basically keep her as a child. She has been referred to as the “pillow angel”. Basically, if I understand it, she was given hormones to stunt her growth. Her parents will be able to lift her longer because of this procedure. Additionally she was given a hysterectomy so that she will not experience bleeding or painful cramps from menses and had her breasts removed so that they will not grow normally. Apparently, the parents believed that she would be more comfortable without experiencing menstruation and developing breasts.

A search on Google displayed over a million sites that comment on this controversy. Here are two for Times articles: Part 1 and Part 2.

I have read many of them and also had a discussion on our Yahoo group. The more I thought about it, the more I thought maybe instead of taking sides on the controversy we should be asking the question about why parents have to make such difficult decisions.

I do want to be clear that I am not advocating for this radical treatment or necessarily agreeing with it. Joni Eareckson Tada made the comment on the King show that it was alarming that this kind of treatment could set precedents. That alarms me greatly. Our history demonstrates that treatment can be universal. In the past all people with special needs be sterilized to reduce the incidence of mental retardation. Also many people were locked up in large institutions that could have functioned successfully in the community.

We have to ask ourselves if there was adequate resources and support for parents of complex children and adults would the parents have felt they needed this treatment to assure they could keep Ashley in their care for as long as possible.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting a Complex Special Needs Adult and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom Articles
Parenting Your Complex Child Yahoo Group

January IEP's Are Here Again

January-February IEP meetings can be among the hardest for teachers and parents alike. While some IEP meetings are regularly scheduled for January or February, many occur because the program is not working and a parent has requested a special meeting.

Chances are you have experienced what I call the “dumb parent treatment” in dealing with some professional relative to your child. Here’s my description of it:

“The “dumb-parent treatment” is an unspoken attitude that seems to imply parents do not understand their children or that parents’ opinions are unimportant. If the parent sees the child as functioning at a higher level than the school or the physician does, then the parent is not viewing the child objectively. It can be conveyed subtly or not so subtly, but the attitude says you are only a dumb parent who does not know anything. How dare you question the opinions of professionals? It is something most parents will deal with at some point in their children’s lives. It is not necessarily about the parent’s intelligence or sophistication. I have spoken with professionals in various fields who were treated similarly when they attended meetings regarding their own children. Excerpt 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/”

The stress of these meetings are has been memorialized on a coffee mug which reads "I survived an IEP". I love it.

I have put a new article on my website called Team Building Advocacy which you might find helpful in preparing for your next IEP.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting a Complex Special Needs Adult and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom Articles
Parenting Your Complex Child Yahoo Group

Humor is Good Medicine

As stated before, I love the humor of Lori Miller Fox. She has done it again with Toasts with a Twist. Lori also links to 10 Christmas Carols for Parents of Special Needs Children on the specialsneeds.about.com site. Both are great comic relief at a time we probably need it most.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect , Lighthouse Parents and Parenting A Complex Adult
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom Articles
Parenting Your Complex Child Yahoo Group

Billy Ray's Birthday Party

Our day started out excited and trying to get things ready for Billy Ray's birthday party. By mid morning it was getting more difficult. I don't know if it was the excitement on his part or pain from two folicitis leisons he has in somewhat delicate areas of his body. Nevertheless, we got into a full scale behavior - the kind that exhausts me for days. Thus, the choice was to cancel the party or risk that we could work through the behavior before time for his guests to arrive. I chose the latter because he has not had a birthday party in two years (the first when we moved the day after his birthday and last year when he was too ill). He clearly wanted to do the party. We went forward clearly not able to do everything we had hoped to do especially in terms of housecleaning, etc.

Here are some pictures to share his party with you. Below is Billy Ray manning the door. He loves greeting people.

Hugs abounded. Here he is hugging Denise Lighthill one of his special people.

Below he is making the ice cream punch.

He was more social in terms of interacting with his guests than he has been of late. We were also able to get him to look at the camera and smile. Here (below) Pastor Lighthill was taking the picture and got him smiling for the camera.

His favorite part of his parties (or any one else's party is always blowing out the candles on the cake). Interestingly while he loves blowing out the candles he doesn't really like cake.

In September when we had guests for dinner, a friend brought a birthday cake for his wife (Donna referred to in many posts herein as the cookie lady because she bakes the high fiber cookies for Billy Ray). To our amazement he not only really got into blowing out the candles on Donna's cake but loved the cake. It is a chocolate raspberry that a lady in our area made. I was able to order an identical one for Billy Ray's birthday this year. Here he is blowing out the candles with Sarah looking on.

Below left, he is really getting into opening his presents:

So often we just don't know how Billy Ray will react. It is difficult to decide whether to do events like this especially when the day starts out the way it did yesterday. The alternative is isolation and loneliness. It is worth the struggle to accomplish. I can't ever remember a birthday party where he mingled as well and seemed to enjoy his party as much as he did last night.

It appeared that everyone had a good time especially Billy Ray. The picture on the right doesn't have anything to do with Billy Ray but I can't resist sharing it. This is Billy Ray's service dog Penny Lane and Sarah Henry. Even the dog seemed to enjoy the evening.

Our friend, Dave Peters, brought Billy Ray an assortment of fun things to do including silly straw. He really enjoyed spraying it towards his guests. I regret the pictures of that didn't turn out because he was having so much fun with it.

Denise and Pastor Lighthill brought Billy Ray a large soft textured pillow with sports figures on it. Jeannie also brought him a very plush and soft Koala bear. Billy Ray went to sleep cuddled with both which seemed to be an indication of how the evening went for him. Very rare for him to go to sleep so easy and peacefully.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect , Parenting A Complex Special Needs Adult and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom Articles
Parenting Your Complex Child Yahoo Group

Feelings of Isolation - Adapting Family Events

I am hearing from lots of folks who are feeling isolated right now. I so know what that feels like. I am working on an article about coming out of isolation and the need to create a community that works for your child and the whole family based on the procedures in Entertaining with Billy Ray and The Holidays with a Complex Child.

Today is Billy Ray’s birthday so we are trying to get things ready. There is still a part of me that hates the lack of perfection because I am a “perfectionist messie” but it is better to adapt to what works for us than to stay in the isolation of never entertaining. The need for coming out of isolation has superseded the need for perfection in our home.

I will try to get some pictures from Billy Ray’s party and post them tomorrow.

Merry Christmas to all.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Lighthouse Parents and Parenting A Complex Special Needs Adult
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom Articles
Parenting Your Complex Child Yahoo Group