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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Unexpected Relationships for Your Child

When we were looking for a new church following moving, we visited several churches. It seemed they either didn't have the music which Billy Ray needs to calm him enough for him to stay reasonably quiet during the rest of the service or they were not able to accept his occasional speaking out.

Finally, I started calling pastors and inquiring before we visited because the process was difficult for Billy Ray and his Mom. When I called Pastor Ray Jones, then pastor at Soul's Harbor Church of the Nazarene, to inquire how receptive his congregation would be to Billy Ray he asked if I had considered attending without Billy Ray. I said an emphatic "no". In all fairness to Pastor Ray I have to tell you that this church was his first pastorate and he was new out of Bible College.

We visited Soul's Harbor. Billy Ray was always treated okay but it took a while for him to be totally accepted. The thing that seemed to bloom immediately was his relationship with Pastor Ray and his wife Christine. It seemed Pastor Ray was working Billy Ray into his sermons on a regular basis. One time he said "we want more of the Billy Ray's in our church." Another time he was preaching on relationships and he eluded to his relationship with Billy Ray as something very special and it truly was.

The relationship with Christine was very special to Billy Ray. I remember the first time he tried to take her hand unexpectedly she sort of cringed. I was not shocked by that because putting myself in her position I could see that it was a bit strattled for basically a strange man to run up grabbing at her. His love for Christine was so clear to her and others. She called him her biggest fan because he would become agitated when we had special music preferring Christine to sing. He had to know she was at least there even if someone else was singing.

During the six years we are at that church Billy Ray was quite ill. He was too sick to be in church. I told Pastor that Billy Ray was saying "I want Christy-deen to sing to me". They had a CD that Christene had made several years before and Pastor made a copy for Billy Ray. He loved it so much it wore out and Pastor had to make him a new copy.

You can see the awe in his eye contact (which he doesn't often have for others) in the above picture taken at that church the last Sunday before we moved to LaPine. Billy Ray loved to give Christine flowers on her birthday or following a muscial presentation. Here is he is giving her one last bouquet.

It is amazing the beauty that can occur when you put forth the effort to help your complex child establish relationships. Sometimes it can feel awkward but it is well worth it.

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

Our Support System

My thoughts are going over the events of the last year and wondering how we got through. There is so much to be thankful for. This is by no means a complete list of all who made a difference this year but I want to say thanks to all of you who made a difference.

We are truly so blessed Billy Ray is here with us. During the 9 days on the ventilator in Critical Care this past July I really wasn't sure he would be here by now. People prayed that I didn’t even know and he is here enjoying Christmas. Of course, having great doctors made a big difference. I can't begin to explain the strength I felt increase when I saw my brother, Jim, walking down the hall. Jim and my sister-in-law were with us through the first few hard days. My mom kept people updated and returned phone calls that I couldn’t possibly do.

I was horrified when they started letting Billy Ray wake up with that thing down his throat. The doctors told me they wouldn't do that when I agreed to let them put it in. His father's description of the terror he experienced waking up on the ventilator was clear in my memory. If it so terrorized my late husband, how would Billy Ray feel. My stepson, Michael and his wife, Rebecca were there when that happened. I had noticed his restlessness and tried several things telling him to blink for yes. He didn't blink until I asked him if he wanted me to go out so "Bubba Mike" could come in. I knew then that his cognitive ability was not damaged from the incident when he blinked so quickly at that cue.

In the picture on the right Rebecca, my mother--in-law and father-in-law are in the front row. Larry and I are in the back row with Michael.

I know I said it before but I have the best mother-in-law you could ask for. She does special things for me personally that I can't possibly describe. I may have shared before that she made unbreakable coasters for the coffee table and put them in a nice basket so that WHEN (not if) Billy Ray throws them they can't hurt anyone. Mom Luci makes it a point to try to understand what Billy Ray can handle and what he loves. She is a constant encouragement about my writing too.

Here is another example of Mom Luci's effort to do something special. She knows that I love music boxes and lighthouses. My Christmas present this year is a mirrored music box with a lighthouse and dolpins. It makes me feel so femine winding it up and looking at it on the top of my computer credenza. She also knows her son and my son well. Larry loves racing especially NASCAR and Billy Ray wants to be just like his stepfather. Pictured are Billy Ray and Larry this morning in the matching teeshirts they got from Grandma Luci.

Our church family has been right supporting us all year. I shared in my previous post how one family even loaned us an RV and another hauled it when Billy Ray was in the hospital so I could stay right there with him. The cookie lady, Donna, making cookies every week to aide with constipation issues for Billy Ray and so many other things from the “family” I couldn’t even hope to list.

Dave Peters has been my assistant in the Lighthouse Parents ministry and a real friend of our family.

I feel like I have another whole family at AMACOM Books who were so supportive of me though they were trying to get my book in print during Billy Ray’s crisis.

The new consultant and friend, Keddie, has helped me with staff training according to my methods so that I could focus on writing. Our county case manager has been there everytime as has his supervisor. I am so glad we were in this county when the crisis hit.

Hope it is going well for you and your sunshines. There are so many stresses but hopefully you will have some time to reflect on the blessings and even baby successes your child has achieved.

Merry Christmas,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com