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

Amazon Author Blog

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

Follow me on Twitter
My Wellsphere Page
Lighthouse Parents on Tangle

Parenting Your Complex Child Yahoo Group

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: http://www.parentingyourcomplexchild.com/ and http://www.lighthouseparents.com/
Club Mom
Yahoo Group

Billy Ray "Made My Day" (of a Stranger)

Yesterday Billy Ray went to see his medical provider, Brice Stanley, because of another case of folliculitis (described on my website). While I was registering him at the desk, Ron, his support staff, noticed that the picture I had taken for a prior blog post was up on the wall of the reception area. Billy Ray, not feeling too well, was not very impressed but did eventually get up to look.

As you can see here, it is not the best picture of either of them.

As we were walking out after having Brice work on Billy Ray's folliculitis to drain several of them, a lady tried to stop Billy Ray to make him look at the picture. "That's you" she said. "Did you see they have your picture up with your doctor."

Billy Ray was not his usual social self. He called "Mommie" but did go with the lady and me to see his picture with Brice. I then hugged him and told him to go with Ron while I dropped off his presription to be filled.

The whole interaction between Billy Ray and the lady was only a minute or two but she was elated. She said "it just made my day to meet him". It pleased me that even on a bad day he can touch the lives of those he meets.

Until next time,
Peggy Lou Morgan
Amazon Blog
Parenting Your Complex Child Website
Lighthouse Parents Website
Yahoo Group

Reflections On How Far We've Come

It is late and an I am in one of those reflective moods again. It has been weird week, not entirely because of Billy Ray's issues. Our family is going through the kind of thing all families experience at one time or another in their lives whether or not they have a special needs child. It just seems to have come all in one week this time.

I wanted to lighten up a bit for the blog today and pertend I was Lori Miller Fox. In looking through the massive picture and visual files for Billy Ray for a picture I had in mind, instead I found myself reflecting on the stages of our life together as mother and son.

Too often we get so stressed by the present we forgot the fun moments. Here are a couple of those memories from our life together.

This little picture of Billy Ray in his crib always brings me so much joy. There is another picture taken the first day of his adoptive placement before his haircut that shows the transformation he made in the first day he was home. It is too old and worn to scan for you.

At fifteen months he didn't walk and was evaluated at about 4 months developmentally. Two months later he was running as if trying to catch up on life.

One year my attorney and Billy Ray's best buddy, Doug Harrison bought Billy Ray this race track. He loved to play with that toy more than any toy he has ever had. It is fun for me to see him being all boy before the Autism became more severe following a series of seizures at 14 years old.

We also did Challenger Little League. If you have a change to get your child involved in that program or just to go see a game it's something you won't want to miss. Challenger teams are little leaguers with various disabilities including children in wheelchairs and developmentally disabled children. Buddies from the other teams are assigned to assistant each Challenger team member. It is always a tie game and just for fun. Many team members will run to third base instead of first and receive just as much applause. It gives the kids a great sense of accomplishment as well as a lot of fun. Here is Billy Ray the "catcher" .

It is hard to imagine the mature young man delivering Meals on Wheels with his support staff, Ron below is the same little guy in the crib above.

You really have a come a long way Baby and I am so glad you let me come along with you.

Until tomorrow,

Peggy Lou Morgan

www.parentingyourcomplexchild.com

www.lighthouseparents.com

One Benefit of Creating a Community for Your Complex Child

We have talked about creating a community in several posts herein and in some of my speaking events. See She Isn’t Typical She’s Trisha for more detail.

I like to think of it as creating a small community within the larger community. Your child gets a chance to know those he meets regularly and they know him better than if you frequented several establishments of the same type. When there are problems he is accepted where he might be kicked out if they didn’t know how he is normally.

A good example of this happened Wednesday at Gordy’s Truck Stop, a restaurant in our little town of LaPine, Oregon.

We avoid going out when he is agitated and more likely to have behavior problems. Additionally, we have an as needed medication that can be used if we have to go out. It works pretty well to take the edge off when needed. However, Tuesday he was in a calm mood so we didn’t use anything and felt totally safe to take him to an early dinner.

Billy Ray chokes easily and when it does occasionally it can agitate him. He has from time to time thrown himself on the floor but he has never exhibited the out of control behavior in public that he does at home.

Wednesday he had a minor choking incident at Gordy’s and got irritated but not agitated. We aren’t really sure if that set him off or what it was. He started hitting me and got up knocking all the things off an empty table next to us, knocked over the chairs then threw himself on the floor. It took a while to get him out of the restaurant and made quite a scene.

I was humiliated by this experience, sure that he would be barred from Gordy’s forever. After we got him to the car, my husband stayed with him and I went back to apologize. The waitress was concerned that they had done something “because he is always so good”. She said that he is absolutely welcome to come back.

I called the owner the following morning to apologize again and he was just as understanding and accepting.

This acceptance even in such difficult times comes when the folks in the community relationships you have created know your child. They know that this is not the norm so are less likely to reject him if he has a bad time.

Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

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

Billy Ray and Cloud (Horse)

I am working on post about Autism and Bipolar for you. It is getting late and I have lots more to do on it. I will finish it for tomorrow.

For today here is an example of Billy Ray's community activities. He went to the church to do some volunteer tasks and out to lunch with his support staff. Then as a treat he goes to visit a horse named Cloud owned by a waitress we met here in LaPine. Most days Billy Ray goes to visit Cloud and brings it a carrott. Cloud really seems to enjoy the visits as much as Billy Ray does now.

Billy Ray is going to be 23 on Monday. I will try to get a picture at his birthday celebration. We will see if he co-operates.

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

Unrealistic Expectations

We can get frustrated as parents when no one seems to understand our children. I spent years being defensive and angry with lack of understanding for Billy Ray. It felt like people who did not have clue what we experienced were judging Billy Ray and me.

One day in a conversation with a friend, I tried to explain why Billy Ray is often dressed well and I am in jeans with wet hair and no makeup when we get to church on a Sunday morning. Doing my makeup, hair and getting dressed before giving Billy Ray’s bath is a waste of time because he splashes water and I get lotions and toothpaste, etc. all over me getting him ready. Once he is ready to go, he thinks it is time to go. To make him wait too long for me to get ready will likely agitate him to the point he may flop on the floor in confusion or agitation and be unwilling to go out the door. Sometimes it is a choice to go without the primping I would like to do for my own appearance or to stay home.

I was hurt by her seeming lack of interest in my explanation. Later as I thought about the conversation, it was like a light dawning. How could she absorb what I was so laboriously heaping on her. Would I have been able to do that before Autism came into our life? Probably not.

During my husband’s recent visit to his sons in California, my consultant friend, Keddie, came over to spend the evening and night with us. She left the guest room door open because she said she wanted to get a better picture of what our nights are like. The next morning she told me that while the journal we maintain on Billy Ray’s computer show the times we are awake in the night she would never had realized what the nights are really like had she not come for the night. Keddie is a skilled consultant who has many years of experience with people who experience of variety of disabilities. If she needed to see it to grasp the bouncing, noise, and interrupted sleep how we expect the general public to comprehend it.

The same is true of professionals or people we meet in the community. They see our children as they are when they meet us. What we experience everyday alludes them because our children may behave one way in one environment and another way in a different place.

One of the biggest jobs we have as parents is to educate those involved with our children. It is just as unrealistic for us to expect them to understand as it is for them to expect our children to act in certain ways.

I just wanted to add too that the our children have a big job in educating us as parents. On occasion when I will instruct Billy Ray to be a little quieter in the morning he will say “I can’t”. My lack of understanding must frustrate him at times as much as society frustrates us as parents.

Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.ligthhouseparents.com/

The Holidays with a Complex Child

The holidays are special to me because I am my mother’s daughter and her mother’s granddaughter. We love to entertainment and the more the merrier. The desire to do the big meal and have the house spotless with gorgeous decorations like I used to do before Billy Ray’s complexities affected my ability to prepare the kind of meal I want to feels like too much, If we invite a big crowd it adds to the difficulty of preparing the feast while taking care of my son.

What seems overwhelming is doable with those two magic words again “adapt and communicate” and teamwork. Visuals communicate to Billy Ray what we want him to do and who is coming. We adapt by having him do tasks that he can do while I do others.

When I was a child, my maternal grandmother taught me to make her homemade yeast dough for biscuits and cinnamon rolls. Billy Ray loves to knead the dough with me. I can have him kneeding the dough while I am chopping the nuts for the cinnamon rolls. He can do an amazing percentage of the process and loves the act of “making bread” with Mom.

Grandma Wikoff also taught me to make her scalloped potatoes. We found a special potato peeler that works well for Billy Ray with his fine motor issues. He works on peeling a potato while I peel several. Then he washes them in the sink while I am slicing some, and putting the other ingredients in. He sprinkles the cheese on each layer.

My husband boils the eggs for my deviled eggs so they are ready for me to fix while Billy Ray polishes the table top and puts out clean placements. If he misses a spot the placemats will cover it usually. We count out the appropriate number of spoons, knives and forks. He puts one on each placement. Forget whether they are all in the same order. This is Billy Ray’s beautiful table and everyone enjoys his pride in it.

No we can’t put out delicate glass trinkets that he might be tempted to throw but Walmart and Target (and other places) have lots of great décor that are non-breakable and cheap. We can enjoy the beauty without the risk.

The joy is just as great without the perfection.

Until tomorrow,
Peggy Lou
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

Support Not Sympathy and the Value of Disabled Persons

The value of life of a complex special needs child is something that I find myself getting on a soapbox about all the time. In my recent post “My Outrage … Mother Gets Suspended Sentence for Killing Son” I shared my anger at the way a mother was not held appropriately accountable for killing her Down Syndrome-Autistic son. Last night a comment came in with the link (http://www.geocities.com/growingjoel/murder.html) to a site where an Autistic man has compared the sentences received by parents who kill their Autistic children as opposed to those who kill their “normal” kids. It is harsh to read but reality.

There is a declining segment of our population that I believe is a loss to society – children and adults who experience Down syndrome. Prenatal testing now identifies disabilities including Down syndrome. The choice not to bring a child with Down syndrome into the world is increasing. Will there cease to be the loving smiles of Down syndrome folks in our world?

Parents of complex special needs children with any diagnosis have burdens far beyond what most of us would understand unless we have been there. It is full of joy and sadness. The highs of elation at small successes are beyond description and the heartbreak of watching a child struggle and suffer devastating. It is hard enough to ask for support from friends, family, and the government. When requests are misunderstood and denied the defeat is more painful and humiliating.

Well meaning governmental programs sometimes confuse more than help. There is a changing attitude on the part of society relative to disabilities. There is a great deal more sympathy. This nice but can be counter productive too. The sympathy is often directed towards parents rather than the children with disabilities.

It has been suggested several times that we place Billy Ray out of the house. Each time it it has been hinted that it is for my benefit not his. While the sympathy is nice it comes across as “why don’t you get rid of your burden?” I have no problem with programs such as group homes, etc. if it some placement could be found that he could thrive in. He is too complex for that presently so we have created a system that works for him at home. I do have a problem with the idea that he should be placed because it is easier for me not what’s best for him. Someday I will be unable to take care of him and that will be different.

I absolutely agree that parents need more support. That is why I wrote Parenting Your Complex Child, do this blog and maintain my websites. It is my desire to help parents help their child. Hopefully this post will not minimize my belief in that need.

The kind of support parents need most is appropriate programs to assist them and attempts to understand what their day to day life is realistically. There needs to be some flexibility in programs to recognize the individual needs of each child as a person. That’s why I say “this is how I figured out what worked for Billy Ray” instead of saying “do what I did.” Too often programs are designed for the general population of disabled persons and complex children like Billy Ray do not fit into those programs. The support that parents need to customize the programs to their children is hard to get.

As long as disabled children and adults are seen as a burden to be dropped or stashed away somewhere and parents receive pity instead of support, we will continue to experience the isolation, desperateness, hopelessness and hear of parents hurting their complex children.

Until tomorrow,
Peggy Lou
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

What I Learned from My Grandchildren

Before the medication reaction brought out severe Autistic symptoms in Billy Ray, we met my present husband, Larry and his large family (4 adult children and 12 grandchildren). Billy Ray enjoyed his new nieces and nephews very much and played reasonably well with them. Hans used to say "Billy Ray is a good uncle" which delighted Billy Ray greatly.

After his behavior changed some of the children were frightened by him and others thought he was being naughty. I sought advice from the developmental pediatrician on how to explain his increased noise and activity to the children so that they wouldn't be frightened. Then one day when Elora, Alena, Hans and Oren were visiting from California, Larry involved Billy Ray in something else so I could sit down with them. I explained that Billy Ray could not always control his noise and movements and sometimes had a hard time answering when they talked to him. They asked incredibly mature questions which I answered as best I could.

Watching the relationship change and their understanding of their uncle grow was amazing. The fear disappeared when they understanding increased. It became apparent that as parents we also need to educate others about our children. Out of that knowledge, I realized that many children and even adults in the community stare because they are frightened or they don't understand. The methods for creating a community for Billy Ray came substantially from what Elora, Alena, Hans and Oren taught me about how they perceived him.

Now if we are on the phone with Elora and she hears Billy Ray being noisy, she will say "Is that Uncle Billy Ray? Let me talk to him, it will help." It calms him everytime. Most of "my nieces" read to him when they visit and he loves that.

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