Just for Fun...6/12/06

We just got back from seeing Dr. Masterangelo. Billy Ray is getting better. No issues to report. He hasn't been sleeping as well and my mind is wearing down so I don't have a much to share on this blog today. However, I can resist sharing the pictures I took this morning.

He came into my office this morning after his bath. He had his uniform (like "Bubba Mike") and both the radio hat and walkman on. He doesn't have the radio on in the hat but he loves the antenna on.

My mother-in-law is so creative as knowing what Billy Ray likes and finding things in catologs, etc. Several years ago she found these radio hats and Billy Ray loves them. He doesn't always wear them with the walkman but when he does it is cute.






As I snapped the picture on the left he put his head down. I am putting it up anyway because you can see the hat better.

He is still having some pain. Dr. Masterangelo said the pancreatitis maybe chronic - he may have days with no pain other days where he needs to take pain medication and some days he will be hospitalized with it. However, the charming little boy that left us at 14 years old when he had a series of seizures, is re-emerging pretty often in the past couple of weeks.

I suppose that what is cute to me may not be cute to all but I must share. After we got back from speaking at The Arc of Oregon conference at the end of April we were sitting at the dinner table with him. He was especially noisy and I asked him to be quieter because I had a headache. He looked over at me and grinned. He said "I pay you back". I asked him if he was paying me back for being away and he grinned. That little imp!!

Yesterday he and I were making a casserole and then he and his stepfather took the kitchen garbage out. While they were gone a heavy thunder hit. When they returned I asked Larry how Billy Ray had handled it. Billy Ray piped up with "farted" and laughed. He wasn't upset about the thunder at all.

Until next time,
Peggy Lou Morgan
Amazon Blog
http://www.parentingyourcomplexchild.com/
www.lighthouseparents.com
Yahoo Group

Newsletters

We have always planned to do a regular newsletter but haven't gotten many out. Beginning with a July issue we will send out one via email. We will probably do them at least quarterly.

It is planned that the next letters will include my schedule when I am traveling, new materials added to the websites or links to special blog posts, articles, etc. that I think you might find interesting. From time to time there will be some articles as well.

If you have already noted in the guestbook for either of my websites that you want to receive a newsletter you are on our mailing list. If you haven't signed the guestbook on the sites you can just email me to be added to the list.

Hope everyone is having a great weekend. Billy Ray is doing fairly well today. He has played with his service dog more than he has in a long time. As I write this he is asleep and she is on the floor beside his bed. They are both tired out.

Until next time,
Peggy Lou Morgan
Amazon Blog
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Yahoo Group

Reflections of a Different Kind..6/9/06

The email from some of you worrying if I don't post everyday is humbling. Yesterday, Blogger was having some issues and everytime I tried to do a post it said they were having having technical difficulties.

Billy Ray is doing fairly well. He is getting over the sinus infection gradually. Still having some pain in his stomach but it is more manageable. He is continuing to be interested in doing more things and we are revising his schedule to accommodate him.

As a general rule, I try to stay focused on topics relative to special needs children specifically. I am aware that readers with differing opinions and from many different areas of the world visit expecting posts about parenting a special needs child.

However, if I would have been able to get on Blogger to post yesterday I would have written about my stepson, "Bubba Mike" (Billy Ray's name for him). I was missing Mike so much yesterday with the news of the capture of the terrorist in Iraq.

Yesterday CNN showed more of the beheading of Nicholas Berg (believed to be done by Al-Zarqawi peronsally) than I have seen before and I wasn't prepared for the horror of it. I felt a real surge of appreciation for Michael and all the troops internationally for helping to keep our children and all of us safe from terror.

Michael is in the reserves and called to active duty for a special project. He is not in Iraq but that doesn't mean he is in no danger. He has already done one tour in Iraq. Not only is he sacrificing by being away but his wife Rebecca contributes by keeping their home together for Elora, Alena, Hans and Oren.

I wanted to say thanks to Michael and all his colleagues as well as to the families.

Until next time,
Peggy Lou Morgan
Amazon Blog
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Parenting Your Complex Child Yahoo Group

So Much Fun

It is fun for me to see Billy Ray emerging as his old self. In addition, hearing Ron, his support staff (pictured here giving Billy Ray high five following a strike bowling) marvel at the difference in Billy Ray is great. He keeps saying I guess all we needed to do was get rid of the pain. Probably more involved than that because we have changed meds too but he is right Billy Ray's old charm is returning with rapid speed and without nearly as much agitation.

I looked through a lot of the childhood pictures to try to find one that would capture this charm (that I haven't already posted here). Probably my favorite one that shows his little impish type personality is already posted here. But here is one taken when he was four years old that shows the charm I am trying to describe too.

We need to call his barber today and get his haircut. He has been so sick that he has gotten shaggy. I will try to take some current pictures after that.

This newly re-emerging Billy Ray is keeping us busy reinventing schedules to keep him challenged at just the right level. His timing is not wonderful because I am also involved in publicity for Parenting Your Complex Child and writing some articles for Club Mom. Nevertheless, we have to capitalize on his need for new challenges while we can.

My consultant friend, Keddie Wanless, is helping me by contacting some of the community resource possibilities for adding activities and assisting with the schedules.

It is worth every effort to see our Billy Ray enjoying his life more.

Until next time,
Peggy Lou Morgan
Amazon Blog
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Yahoo Groups List

Then and Now..6/6/06

With joy we realized Saturday that what that we were seeing the Billy Ray, not just from a year ago before he had his most major health crisis but glimpses of his higher functioning before the seizures which changed him so completely at 14 years old.

I haven’t shared as much about what life was like before that. This is probably because the present, or at least the recent past, becomes so consuming it is like a separate life. It has been touched on in Reflections on How Far We’ve Come .

Billy Ray could go with the flow most of the time as a young child. He became hyperactive young but overall was able to do many things independently and didn’t require the structure he needs today. For example, his before school activity might look like this:

• Wake him up with the help of the dog because he was hard to wake up.
• Tioleting, independently except that he would call me if he had a bowel movement to wipe him. He was able to wash his hands by himself but would sometimes fail to get them totally dry.
• Hygiene required minimal assistance with his teeth but he washed face, put on deodorant, etc. without help.
• Give him a snack with his pills. He would eat breakfast at school but needed something with his medications.
• He would select his clothes and dress independently. I would be sitting at the dressing table in my room across from his getting ready for work. He would come to be buttoned or have his shoes tied which he has never been able to do.
• He made his bed and feed his dogs with little coaching.
• He gathered backpack by the door and put his coat on.
• If he were ready before bus time, he would watch cartoons for a few minutes.

Today, at 23 years old, he is no longer in school and requires a lot more assistance in most steps of his acitivities. We need to use a lot of visuals for him to understand what is expected of him and follow the same sequence as consistently as possible. We use a picture schedule and symbols. I tried to upload one into this post but can't figure out how to do that on Blogger. I managed to get the pictures and text columns on my website so you can see a sample of what we do. It is not the form because the website wouldn't let me upload tables or spreadsheets which I normally use.

You can clearly see the difference between the Billy Ray of those days and now.

After the seizures, the developmental pediatrician told us that most kids return to what was normal for them before the seizures within about six months. It had been nearly 10 years and he hasn't returned to the level he once was. He is showing signs of trying which is great.

I am comparing notes for you as well as myself because of the things we are starting to see but also because I am a bit worried about a decision we just made. The Depakote was used for years as a mood stabilizer and worked well but as I have reported recently he had to come off of it because it caused pancreatitis and diabetes. It was replaced with Trileptical which has now made his white blood count danagerous low.

Billy Ray does not have a seizure disorder but meds for his behavior can lower his threshold for seizures and that is always a risk. Since he needed to have a mood stabilizer I always felt safer if one of the seizure meds was used for that. We have nearly run out of choices except one that has side effects which we know he is prone to and are just as scarey too. We have decided to take the risk of a seizure rather than the risks with that drug. The drug he takes for his behavior (not the same one believed to have caused his prior seizure) does list seizures as a risk but all the doctors we have talked to say they have never heard of anyone having a seizure from it.

I have been stalling on getting him off the Trileptical but his white blood count is dangerously low again so we are going to have to get him off of it faster. It is again time to trust our instincts and do make best decisions we can with the information we have available.

Until next time,
Peggy Lou Morgan
Amazon Blog
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Parenting Your Complex Child Yahoo Group

Morning Again, Regrouping 6/2/06

It’s morning or so the clock says. It doesn’t feel much like morning, more as a continuation of the night. When I wrote But its’ Still Dark Outside Billy Ray was having lots of sleep issues. A new behavior medication was added last fall when we were having the most difficult behaviors and his sleep actually improved. I was beginning to think that we had hit on something because it has lasted longer than normal. This is a common thread we have experienced for years. He will have periods where it looks like whatever we were trying for sleep is going to work but a few months later we are right back into being awake a lot at night. Now he is waking up earlier and earlier. We have been up since 4 a.m. today.

We probably have to start over more than many of you because of Billy Ray’s medical issues. Many times in the last couple of years we have had him doing well with a routine only to get sidetracked with some form of health crisis and have to start again when it is over. We are again, where we were when I wrote about seeing a change coming and about regrouping here and here . It may take a while to get back to the elation of getting him back on track but we are headed in that direction.

As we discussed sequence is very important to Billy Ray and many complex children. It is a hard concept to explain to staff and family members. As long as the activities or tasks are done some find it difficult to understand why it matters which order we do them in. It certainly does matter to Billy Ray. He demonstrated that to his staff this morning in that he tried to put coffee cups in the dishwasher before his regular routine.

Last night I experimented with reworking his evening schedule. There were two reasons for this. First, past history demonstrates that the closer to dinner he goes to bed the more likely that he will get to sleep. He gets sleepy soon after dinner but later he gets his second wind and will stay up all night. However, it seems everything I have been reading about GERD (acid reflex) lately talks about the need to separate dinner and bedtime by at least two or three hours. The normal procedure could be contributing to his problems with GERD. Second, he has been giving me static about brushing his teeth and part of his evening routine lately.

Last night he had an early dinner. He went into his room and started putting his sweats on as he normally would do after dinner. He has been showing considerably more independence in this process except for the hooded sweatshirt so I tried not going into his room until he was at that point. He seemed pleased to be allowed more independence and privacy.

His normal routine would be to ready for bed including teeth brushing before he gets his popcorn. We know it’s not great to let him eat after teeth brushing but he had frequently fallen asleep during his popcorn and/or refused to brush his teeth after it pretty regularly so we kept the routine that way. Last night, instead of doing the teeth brushing after he toilets I waited until he had finished his popcorn with his movie. Then I cued him “let’s go brush your teeth and get the popcorn out of them”. It took him a couple of minutes to respond because it was a different sequence but he did respond and let me brush his teeth longer than he does sometimes.

We were able to get the recommended time between dinner and bedtime and he actually did go to sleep. I made notes in the journal (on the computer in his room) and we will see how it goes over the next few days before actually changing his schedule permanently.

Billy Ray is working his morning routine and getting ready to go bowling today with his support staff. I think I’ll take a nap.

Until next time,
Peggy Lou Morgan
Amazon Blog
http://www.parentingyourcomplexchild.com/
www.lighthouseparents.com
Parenting Your Complex Child Yahoo Group

Not Well But Much Better..6/1/06

Billy Ray is marching with his walkman this morning. Our house has a great room which is basically living room and kitchen combined. In the corner where the kitchen is, there is a breakfast bar with the sink and dishwasher on the backside of it. The loop between the breakfast bar and stove and through the kitchen around to the other side of the breakfast bar makes a nice circle for him. He loves to march around and around each morning. It is good to see him have enough of his energy back to march.

We used to hate his need to be so active and noisy in the morning. Finally discovered that if we put his walkman on and just let him march to it until he gets his energy out it makes the rest of the day better.

I am reviewing his schedule and trying to modify it, working on what additional training we will need to give support staff as we change schedules. He is keeping us hopping with his improving health and need to be busier.

Ron, his support staff, said that Billy Ray really enjoyed his Meals on Wheels route yesterday. I don’t accompany them on the route so have never seen the interaction with folks but I got the chance the other day when we were at the clinic and a couple from the route were there at the same time. It was nice to see the relationship that Billy Ray and Ron have established with folks he meets.

His sinus infection is still there. He is sneezing some but each day he seems to improve a bit. His energy returning a good sign.

Until next time,
Peggy Lou Morgan
Amazon Blog
http://www.parentingyourcomplexchild.com/
www.lighthouseparents.com
Parenting Your Complex Child Yahoo Group