Wednesday, January 24, 2007

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

Tuesday, January 16, 2007

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

Share Your Adult Placement Success Stories

A comment on the last post must have been reading my mind. I have gotten several email from parents who say that their adult child’s group home are very caring and try very hard. I have also gotten email with horror stories. I admit that I can be a little bias on out of home placements. I was just thinking to request your success stories so we were fair and balanced, as they say.

The success of placements seem to have to do with not only the competence of the facility but the ability of the complex adult to tolerate a group type setting. Billy Ray has been in two different settings that didn’t work. I have been wanting to share that experience but don’t want to imply that all placements result in horror stories. So as the commenter on the prior post asks let’s hear about some success stories. You can either email with them and I will post with or without your name (let me know which you wish) or you can leave them as comments to this post.

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

Friday, January 5, 2007

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