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

Articles on My Website

I wanted to let you know that some of the articles I wrote for publicity for my book are being put on Parenting Your Complex Child website. They are not all there yet so check back often. I have several to add.

I also wanted you to know that I am starting a new blog relative to parenting adults with special needs to separate things out a bit. I hope to write on both a couple of times a week at least.

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