Community Advocacy - Even More Vital

We have dealt with the word retarded before here. It is a slang that I think is quite misunderstood and misused.

I don't know whether it is the tough economic times or something else but I seem to be observing more and more attitudes about people who experience disabilities. I don't think I have ever heard the word "retarded" more.

Getting angry, while probably justified, is not working. We try to educate whenever possible. Here is an example of an incident that Billy Ray and I experienced recently.

A mother and two teenagers were within maybe a foot of Billy Ray when she uttered the R word. I do not think she was specificially referring to Billy Ray but he certainly picked up on the word. I took him by the hand and walked up to them. First I asked permission of the mother to talk to her daughter. Then I introduced Billy Ray to her. I asked her if she knew what the word retarded actually meant and she said no. I explained that it only meant slow and that while Billy Ray and I are both slow in certain areas it is probable that his strength in some area exceeded her strength in that area. She was truly embarrassed, apologizing a lot. I told her I didn't want that but I wanted her to stop and think so it stops at her generation not being passed down for future generations. She seemed more likely to remember the situation and alter her behavior than if there had been an angry blow up.

By helping the community to know our kids as they are instead of sterotypes,hopefully, we create deeper understanding and acceptance.

Advocacy must educate to achieve desirable results. It is taken me years to see that instead of blowing up.

Until next time,
Peggy Lou Morgan
http://www.peggyloumorgan.com/
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

Building Relationships that Bring Joy and Protection for Your Child

I have been posting stories of abuse and literal torture on my other blog here and here. While this post goes along with the idea of protecting children and adults from that kind of abuse I decided to put it on this blog where more parents of young children would see it.

I believe the best protection for children and adults from abuse is to have relationships with people who will stay involved and aware of what is going on in the life of your adult child. As stated in those posts some have said they do not have time to establish those relationships. It does take time but adds immeasurable value.

Billy Ray’s best friends, Donna and Max, are an important part of his life. I know that if something happened to me they would be calling him, visiting him, and checking on him just as they do now. The relationship he has with them is not just for his benefit. I know that he touches their lives too. In fact while they are on vacations, etc. they send him cards that say how much better their lives are because he is in it and gifts that have so much thought in them that I know he is always on their minds.

Donna makes the high fiber cookies that Billy Ray needs for regularity. They are the same recipe that I make (off the oatmeal box) but he will eat them better if Donna makes them.

These pictures of Billy Ray blowing out the candles on their birthday cakes show the affection they have for him.

They are always on his mind too. He has a picture of Donna and himself on the refrigerator. He looks at it several times a day and talks about her each time (see picture below).

Recently I was having a conversation with another friend about Billy Ray’s relationship with Donna and Max. She commented that Donna and Max see Billy Ray as a person not just a “special kid” as others might. This is the kind of relationship you want for your child.

Thinking back over the developing friendship there seems to be some key aspects that have made it work:

Donna and Max do care about Billy Ray. They are also willing to deal with a bit of discomfort at times. (For example, when they were here for dinner once and I started his bath before they left. He started removing his shower wrap in front of Donna which was something she wasn’t prepared for.)

It seemed important for Billy Ray to be understood for who he is so as I do things with him and for him in their presence I would explain why he needs things a certain way.

As they began to know him better, Donna felt comfortable asking questions that helped her to understand him even better.

This relationship impacts Billy Ray and provides a sort of protection; however, it also contributes a lot to community acceptance. People are always telling me that Donna talks about Billy Ray constantly. Billy Ray, as seen through his friend’s eyes, is even more accepted as a person. Others are willing to take the time to get to know him because of the stories she tells of fun things he has said or done.

While there is not time to form a lot of relationships for your child is good to have more than one. Donna and Max are closer to my age than to Billy Ray’s age. I know that they will always be there for him if they can but someone closer to his age would be a great back up.

Until next time,
Peggy Lou Morgan

Blogs: Parenting A Complex Special Needs Adult and Lighthouse Parents

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Parenting Your Complex Child, Lighthouse Parents and Peggy Lou Morgan.com

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Applying Creating a Community Methods to a Hospital Setting

I just wanted to let you know that I ended up getting up with Billy Ray at 4:30 a.m. to give him pain meds. I didn't go back to bed because I wanted to be sure he was okay. Since I was up I wrote a blog post on my Amazon blog about adapting and communicating in a hospital setting. I wanted to give you the link in case anyone is interested.

Billy Ray is a bit noisy but seems to have more energy. He is sorting toys and his closet which is his favorite form of play. He has also been marching with his walkman. While he seems to have some pain which is normal following surgery, he also seems to be doing better than I expected.

Until next time,
Peggy Lou Morgan
My other blogs: Amazon Author Connect and Lighthouse Parents
Websites: www.parentingyourcomplexchild.com and www.lighthouseparents.com
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