If Mom Says No Ask Dad or Support Staff

You know the old adage “if Mom says no ask Dad”. Billy Ray uses the same adage on support staff. If Mom says no ask staff.

In Billy Ray and His Clothes Obsession I shared how difficult it is to get Billy Ray to switch from ill fitting clothes to new ones. He wants the new ones at the store and wants them in his closet but is unwilling to trade them for ones that are worn out or don’t fit anymore. This weekend when I was with Billy Ray, he wanted the “bulldoggey” jeans, which have popped two buttons off the waist (there is no point to sew another one on since they no longer meet) and the zipper, will not close all the way. They are plain too small for him.

This weekend I took a few punches from Billy Ray over his frustration and confusion that the jeans no longer fits and finally was able to help him see that he needed the bigger jeans because he is a big man now. You can imagine my reaction yesterday when Billy Ray came out of his room stuffed into his “bulldoggey” jeans. Staff said “that’s what he wanted”. That means we will have to deal with it all over again.

I told staff yesterday morning when he came in that I had worked through the jean situation with BR and it was written in the journal from the weekend. Apparently I needed to say don’t let Billy Ray put those jeans on.

It is very important to assure that all parties working with your complex child stay consistent with whatever you are trying to accomplish. Discuss your plans or methods with everyone involved with your child and assure consistency will be there.

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's Law

We all know about Murphy’s law. In our house we live by Billy Ray’s law which does have some points that are similar to Murphy’s law.

• The earliest day of the week that Billy Ray gets up is the only day of the week that Mom can sleep in and he will be raring to go.


• If he keeps Mom up most of the night he is most likely to take a nap when Mom can’t take one.


• He is quiet until the phone rings.


• He is the most noisy during the most important telephone calls.


• Clothes never wear out no matter how many times he walks on the too long legs (because he won’t let Mom cut off and hem).


• No matter how much weight he gains his clothes will always fit.


• Everyone is put on this earth to meet his needs and no one has needs of their own.


• Support staff don’t need a day.


• The world waits for him. Stores never close.


• Stores will always have the same style he wants in his size everytime he goes into the store and wants them.


• We will never run out of his favorite foods no matter how much he eats.

This seemed like a good idea to laugh a bit with you and I had lots more to write until, of course, I was finally able to sit down at the computer (we don’t have a Saturday support staff right now). You get the idea. Probably there is law according to your child too. Share them with all of us even if it is only for comic relief.

Off today's topic but I just have to share my excitement with you. Remember how excited I was because we discovered Walmart has Parenting Your Complex Child available for reorder. This week my husband discovered that Powell’s Books in Portland, Oregon (my hometown) has it for preorder. I have spent hours in that bookstore. To know that they are carrying it is like going home.

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

Reflections of An Adoptive Mom

The idea that adoptive parents are somehow better than birth parents because they voluntarily take on the responsibility bothers me. Biological parents of a special needs child have the choice to place their child with the state or give them up for adoption. They are not forced to stay committed to a child who will require more than they are willing to give. Commitment is a choice is either situation.

Sometimes people say “you are a saint” because of adopting Billy Ray. The truth is he was my answer to prayer and my dream come true. Growing up I dreamed of having as many children as my grandparents (13). Infertility was devastating. I longed for a baby to hold and love. At the same time, I recognized in myself that I was more patient with special needs children than my two stepchildren – both teenagers. I adored the personality of many Down Syndrome people I had worked with. It was perhaps a selfish choice.

As the saying goes “be careful what you pray for.” It has been a different road than I would have expected just as if a biological child had been born with special needs. The cute and cuddly experience was short lived. There was no way to anticipate ADHD, bipolar and Autism would become part of our life.

The idea that adoptive parents give up their children more than biological parents is unfair. It is about commitment not blood. If the bond to your child is there you do what you have to do however the child became your child. It was never a consideration for us.

Reading Lora’s blog on emotions I was reminded that when Billy Ray was little the bond became very strong. If I was having a bad day at work invariably the phone would ring from Headstart that Billy Ray wanted to talk to me. He just seemed to know and it could always perk me up. If he was having problems at preschool I just knew and called to check on him. The bond that occurred in those early years is what has carried us through his difficult times.

A different life than expected yes but I wouldn’t have missed it. Sometimes I look at him and say “I’m glad you’re my son”. The struggles we have faced haven’t changed that.

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

Billy Ray and His Clothes Obsession

I have to admit it - I created a clothes monster. Billy Ray loves clothes.

At the time of the adoption I was working in a large office. Several of the attorneys gave us cash instead of coming to the office shower. There were two other baby showers besides the one at the office. I used the cash to buy all kinds of little outfits. There were baseball jerseys with jackets that said "little sluggers", sweats and little suits for Sunday.

Pictured to the right is one of his little suits that he loved. This is scanned from an old Polaroid picture but hopefully you can see the expression. It is one of my favorite pictures. He was about two and a half or three years old.

In the first few years he was not too impressed by clothes. He had little suits that he wore to church on Sundays and would dress appropriately for school and play. However, when met my attorney and friend, Doug Harrison he wanted to be exactly like him. Doug wore suits everyday to work so Billy Ray wanted to wear suits.

His obsession with clothes has continued to be linked to people he admires. I have mentioned before that he names his western slacks and white "cowboy" shirts "Koger" slacks and shirts. Here he is with Mr. Koger, his principal at Silverton High School. He is proudly showing Mr. Koger his high school ring.

When he met our former pastor in Woodburn, "Pastor Ray" he wanted to be like him. So he wants suit jackets which he calls "Pastor Ray coat" and he wears it with "Koger slacks". Here is a picture taken with Pastor Ray, his wife Christine and "my choir" on our last Sunday at Soul's Harbor in Woodburn. Note he can't take his eyes off Pastor Ray even to get his picture taken.



He also loves his "cowboy" outfits since we moved to a rural area where that was pretty common attire.

He prefers one type of clothes for a while and then switches to what he wants. New clothes are fun but often are only worn once and put in the closet. He is difficult to fit especially with his desire for things that may be out of style or discontinued. An example of this is jeans that had a design of a bulldog embrodered on the pocket. The jean manufacturer quit making that style and nothing else will do. Eventually we found some other jeans with the same blue thread with a different design. He still thinks they are "bulldoggy" jeans but accepts them. They are now worn out and way too tight.


Presently we are in a real dilemna because he gained a lot of weight with his diabetes and nothing really fits. We have several things saved from when he gained weight from a medication he used to take but he is not having them.

He does like flags because of his "Bubba Mike's" recent service in Iraq. He will wear some "Army" looking outfits or things with flags for a day or two but then still wants to go back to his own favorites.

Basically we need to remove all of his old things because they are too small and start again. Figuring out how to get him to accept new things even if we could find exact duplicates is challenge. He does know the difference somehow. Given the difficulty in finding things he likes the problem is multiplied.

Welcome to our world (smile). When we figure this one out I will share our progress.

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








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Supporting Other Special Needs Parents

I have read several blogs lately where one or more parent disagree with the handling of care of someone else’s child or other parents’ beliefs about causes and treatment of Autism. The fact that there is no definite theory for the cause and treatment of Autism has added controversy among parents and professionals alike.

As caring people when we see something that works our own child and someone else is not doing that for their special needs child we want to help them. The problem is that in our enthusiasm we sometimes forget that what works for one child doesn’t work for all children.

When packing to move it was obvious how many books I bought trying to find help for Billy Ray. Many of these books gave specific approaches for every child with a certain diagnosis. Most of those approaches did not work for Billy Ray as specifically suggested. It became frustrating. Eventually we gleaned what we could and adapted our own approaches. Thus I tried very hard in Parenting Your Complex Child (AMACOM Books April 2006) to share what worked for us and to give methods for finding out what works as opposed to telling other what to do for their child.

One commenter on Susan Senator’s recent blog post mentioned that she is uncomfortable being around those who use “the diet” because she doesn’t have her child on the diet. That is a sad but true commentary on how parents are made to feel that we must use everyone’s methods for our unique child. Since reading that I keep thinking of Rodney King’s words “why can’t we all get along”.

True support for each other will recognize that a parent must do what works for their child as an individual.

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

Update on Billy Ray 1/10/06

Billy Ray is communicating again. It seemed important to share more of this because of email from some of you asking what I mean by communication by behavior.

He has been experiencing some agitation the past few days that could be from several causes. He is still on antibiotics trying to recover from his ear infection. That can affect his behavior at times. In addition, he does not understand why his clothes are not fitting with his weight gain. Despite the fact that we bought him some large ones for birthday and Christmas and brought some others out of storage, he still wants to wear his favorites, which are too tight. There is nothing that can bring on agitation faster than confusion over his clothes.

During the past few days I have noticed something different in what he seems to be communicating to me by his behavior. Here are a couple of examples. When agitated he might literally throw the breakfast bar stool or coasters or the tv remotes, etc., etc., etc. Saturday he looked at me as he substantially laid the bar stool down instead of throwing it. He caught my eye several times in the past few days and looked at something as if to say: “help me not to throw that”. He kept his gaze at objects until I had time to move them out of his reach.

It appears that Billy Ray is trying to deal with his impulse control issues and asking for our help. It is a refreshing change from broken things.

The combination of the new medication and the approaches we are adjusting at home seem to be helping.

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