Temperamental Mismatch

Temperamental mismatch is where one person's temperment is so different from another person's as to cause conflict. This can happen between parents and their complex children as well.

Billy Ray and I experience a temperamental mismatch - I am a "Messie" and he needs order.

A "Messie" is someone who struggles with disorganization. The term comes from an organization founded by Sandra Felton, Author of The Messies Manual and many other books on organization, Messies Anonymous (www.Messies.com).

A Messie can be quite successful careerwise but disorganized in their personal life. Ms. Felton describes several types of Messies in her books. I am a perfectionist messie. An example of this is that if I go to the linen closet or dresser drawer and find it disorganized I feel compelled to rearrange it before putting away clean clothes. I am also distractable so after I pull everything out to rearrange it I may well get distracted and leave a mess. I try to do too much so have lots of unfinished projects around the house.

When Billy Ray came to my late husband, Raymond and me, at 15 months old with the diagnosis of Down Syndrome, my messiness was not an issue for him. I am first of all a people person and he was my priority. We did all kinds of fun things together which helped him to thrive developmentally. He now has the dual diagnosis of Down Syndrome-Autism plus ADHD and bipolar.

He needs things to be in the same order all the time. For example, he is totally used to unfinished projects near my recliner chair and my desktop. However, he can't tolerate other things out of place. If I leave the ironning board up or something out of place he is likely to throw it accross the room because it disturbs him so much.

On the other hand, Billy Ray contributes to my messiness substantially. Just a few examples are:

• The biggest issue is sleep deprivation. When you are tired it is hard to stay focused on keeping the house organized. There is one medication (of the many tried) that will work for a few months at a time before he builds up tolerance to it and has to stop taking it for a few months. I have noticed that during the months he is sleeping better I do better with the house.
• He requires one to one attention at all times. When we don't have support staff here with him I need to be in view or close ear shot of him all the time. If housework is to be done he must co-operate with the task or it must be able to be done close to him.
• He adds to my distractability by his constant interruptions.
• Noises bother him so I can't use certain appliances when he is home.

Sandra Felton teaches "baby steps". This is vital when you have a complex child. I am discovering that when I am in the kitchen, I can sweep the kitchen floor in the time it takes for his microwave popcorn to finish. We involve Billy Ray in the process as much as possible, planning activities that he will do with his support staff and with me to help around the house.

It is a work in progress. I will share our progress with you from time to time.

Until tomorrow,

Peggy Lou Morgan

www.parentingyourcomplexchild.com

www.lighthouseparents.com

Mom Is Not Allowed to Be Sick

Where is it written that when the kids get sick Mom (or Dad) will drop everything to take care of them. When Mom or Dad get sick parenting doesn't just stop. This is especially true with a complex special needs child. Schedules must be kept. There is no room for "I don't feel like doing that today."

If I have a migraine Billy Ray still wants to have his book read to him. It seems to me that his normal 20 questions become 40 questions with decreased gap in between questions during those times when I need questions.

To you my internet buddies I can just say sorry for the short post this morning while I fight my fall cold. Billy Ray will not accept that explanation so I'm off to answer all his questions and try to maintain his routine while I blow my nose a gadzillion times.

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

Behavior Medication...Friend and Foe

The use of medication for behavior management of special needs children and adults has grown substantially over the years. Some parents swear by it and some hate it. I can see that it has given Billy Ray some years but that his life has been changed negatively because of medications too.

Billy Ray has multiple diagnoses including but not limited to Down Syndrome, Autism, Bipolar, and ADHD. Temple Grandin told me that if a child is not diagnosed with Autism by 3 it isn't usually considered Autism. I know realize that Billy Ray had more mild Autism by then. I never reported things like intolerance for noise especialy fireworks, because I didn't understand they weren't a part of his Down Syndrome. Had I given the developmental pediatrician the right information the diagnosis may have come sooner.

At 5 Billy Ray began being treated for ADHD and at 7 Bipolar. The balancing act of that treatment has been a nightmere of the worse kind. He quickly builds up a tolerance for medications so doseages have to be adjusted regularly.

Just before his 14th birthday the medication for ADHD was changed because the school teacher complained of hyperactivity at school though we were not experiencing problems at home at that time. Two months later the mood stabilizer he used for bipolar (an anti seizure med) began negatively impacting his blood count and had to be weaned. The psychiatrist weaned it very carefully and slowly. The day following his last partial dose Billy Ray experienced a series of severe seizures believed to have been caused by the medication he was using for ADHD.

The first two months following seizures he was alternating between zombie and wild man. Our quiet, albeit active, little boy who was high functioning could now become aggressive and destructive. The pediatrician told me that most kids who experience seizures like this will return to what was normal for them before the seizures within six months. It is clear now that the little boy I put on the school bus that February 1997 morning (he had the seizures at school) is never coming back to us.

The same medication believed to have caused the seizures in Billy Ray has been credited by a highly successful Autistic lady has helping her substantially. For that reason I don't name the medication here or in my book. The reality is it changed lives some for the better and in Billy Ray's case for worse. The risk is there and sometimes the child loses the gamble.

Following the seizures that day he was put on another anti seizure. He does not have an ongoing seizure problem but he uses it for mood stabilization. It has worked when nothing else did. We have tried to change it a few times but nothing works better. However, side effects of that can be pancreatitius and diabetes. As I have been sharing we are now dealing with diabetes. Next week he will have a catscan to determine the pancreatitius next week. We know that his pancreas has fluid and is enlarged but that could have happened when he experienced Appenditius this summer. It seems to me that the same drug that has given him more quality in his life has now turned on him.

To medicate or not to medicate... that is the question that haunts parents. Would I do it again knowing what I know now. Probably not.

I didn't learn about Autism Research Institute and Dr. Bernard Rimland until after Billy Ray experienced the seizures and had symptoms of severe Autism. If I had known earlier I would have tried diet and nutritional supplements first. When I learned of the nutritional problems many people with Autism and other disabilities experience, we studied constantly, worked with our pediatrician, physchiatist and a naturopath to try various things spending thousands of dollars we couldn't afford. I believe that the chances of those interventions working was substantially reduced by years of damaging effects on medications.

In addition to the mood stablizer Billy Ray has been on numerous psychiatric medications to control his aggression. When he seemed to be sick constantly I worked with his pediatrician to withdraw most of the medication except the mood stabilizer, a mild ADHD med and medication for severe agression that we use only as needed .

Many of the observation, adapting and advocating methods I share in Parenting Your Complex Child came out of my attempt to maintain him on the least amount of medication while having the highest quality of life. I really believe that his life would have been better I had understood those methods when he was younger.

It is a difficult decision for parents to make faced with the difficulty of controlling behavior that could be dangerous to the child or others. Some medication may be unavoidable. However, consider your options carefully and look at other possible interventions too.

For those of you asking, Billy Ray's blood sugar continues to improve. It was in the normal range again this morning. Yes!!

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

Small Successes...Great Elation

When Billy Ray was little every small milestone seemed a huge victory. Raymond, his now deceased Dad, used to explain it with an example from his older daughter's life. When she was small she took her shoes and sat on her bed practicing tying them until she mastered the skill. He said he took her for granted because it was much easier for her than for Billy Ray who fights for his successes.

Billy Ray is very proud of his achievements and needs recognition for each small step. He has mastered the art of feeding his dogs twice a day. Each time he does that (with help from me or his support staff) it is important to him to locate his stepfather to get his high five and hear Larry say "good job".

When we are able to communicate to our complex children what they need to do and help them achieve some milestone the elation can be compared to a great achievement.

As I have been sharing, we are trying to get Billy Ray's blood sugar stabilized and adjust to the new diabetes diagnosis. Given his refusal to eat many kinds of foods it is the challenge we weren't prepared for. The past two days I have been talking with Brice Stanley, his primary provider ("Dr. Brice"), reading "Diabetes for Dummies", and devouring diabetic cookbooks to try to come up with alternatives to the only foods Billy Ray tolerates.

Brice told me that his increased appetite is because of his blood sugar and it will stabilize with treatment. Yesterday Billy Ray wanted to eat constantly. Attempting to find alternatives to offer him kept us hopping. I made muffins from the diabetic snack cookbook and tried some new low carb/low fat tortillas that I found in the store. He actually ate alternatives I offered him and didn't go into aggressive behavior when he couldn't have his baked potato and garlic toast for dinner.

This morning his blood sugar tested in the normal range. Yes!!!

Whatever you need to accomplish with your complex child, keep thinking communicate and adapt. It can work.

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

I'm Frustrated!!

Funny thing, I have been trying for an hour to write you a post on being frustrated because otherwise sensitive people and highly skilled professionals so often just don't get it relative to our complicated children. Twice I have tried to publish the blog only to have the internet go down and I lost it. Then I saved it as a draft before trying to publish the post only to have it turn my post into unreadable squibbly lines. Seems somehow ironic.

Billy Ray has been diagnosed with diabetes this week and may also have pancreatitius, both of which could have been caused by the medication used as a mood stabilizer. I will share my thoughts on medications in an upcoming post and in Parenting Your Complex Child (AMACOM Books, Spring 2006). How do you explain to professionals who are sincerely trying to help him that there are only a few foods he will eat and he will let himself dehydrate before he will eat certain things? Yes, of course, you understand the importance of diet and you will definitely do your best despite your sense it is unrealistic.

I share this frustration with you here because I want parents to know that we all experience the frustration of trying to communicate our child to others who seem clueless.

I saw a young lady named Alma, who experiences Down Syndrome, in the clinic waiting room today. Her smile seemed to shine together with her copper hair and perked me up. I enjoyed chatting with her for a minute. Driving away I thought about Billy Ray when he experienced Down Syndrome before the symptoms of severe Autism began as well. I wondered would I have understood someone like Billy Ray in those days. Probably not.

Our job as parents seems to involve a lot of explaining our children and educating the community about his needs. That can be a frustrating experience. We have a right to be frustrated but we don't have time to be stuck in it. There is always something to do for our child.

Okay I'm frustrated but tomorrow I need to try a few more recipes from the diabetic cookbooks I bought yesterday. I actually got him to eat the biscuits from one of them instead of the garlic toast he normally demands tonight. Maybe tomorrow we'll find some new way to help Billy Ray adapt to what he needs to do.

You will probably tire of hearing that word "adapt" here. One of the chapters in Parenting Your Complex Child is Communicate and Adapt. That is really the answer to our frustration. We have communicate with our child in the way he needs to receive information, adapt his life to what works best for him and his family and communicate with others what he needs.

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

The Lighthouse Concept

Whether you consider it intuition or spriritual discernment, as I do, many times parents just know when something it isn't right with their child even when there aren't obvious signs.

There have been many times with Billy Ray that the professionals involved in his care and education just didn't have the answers and neither did I. What I often refer to in my writing as bootstrap learning came to me as I turned back to my faith and began praying something I came to call the lighthouse concept. You can read it about it http://www.lighthouseparents.com/Lighthouse_Concept.html.

We have been experiencing that with Billy Ray recently. I having been asking for guidance because I knew something was up and no one seemed to come up with answers to his continuing to be sick after he should have recovered from his surgery this summer.

When I wrote you yesterday I sensed that something was up and that he was not just having a good time over the weekend. A few hours after I posted my blog I got the lab results from tests done at the end of last week. I knew that I knew Billy Ray has diabetes. I suspected it for the past few weeks. His primary medical provider has been on vacation but I pushed to get someone to order a fasting blood sugar. It was confirmed yesterday.

Diabetes might seem common and easy to treat. When your child has complex special needs, sensory, reflux and other issues make it difficult just to find something your child is willing to eat. Whenever Billy Ray has to take antibiotics, experiences constipation or is ill with something else he basically stops eating and sometimes gets dehydrated. It has been necessary to be creative in what we give him. For example, I made milkshakes with dietary supplements like Ensure and fresh fruit besides the normal contents. I started making him stuffed baked potatoes with finely ground sirloin, cheese, etc. just to get as much nutrition in him as possible.

We have been here before in terms of trying to be low cal and sugar free because one of his former behavior medications caused him to gain 60 lbs. Thus we have substituted sugar free syrup for his waffles, skim milk for whole milk, sugar free jelly for his favorite strawberry jelly, etc., etc. He stopped eating!!

It is pretty clear I am going to need the lighthouse concept (praying for guidance) for this one. It is going to be maybe the biggest challenge we have had with Billy Ray. The risk is that he will stop eating if he can't have what he wants or that he will become so aggressive because he can't have his favorites he won't be manageable at home.

It is my intention to share this challenge with you. What we do with Billy Ray may not be the answer for your child but maybe it will jumpstart your thinking with your child. The purpose of my writing in general is to help you adapt not to what works for you and your child not to get you to do things my way.

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

Monday Morning Reflections

Billy Ray has been awake since 6 a.m. or so. He is noisy and bouncing while I am in a reflective mood.

He had such a good weekend behaviorwise. This is a good thing but may mean something is changing. Sickness or fear can manifest itself in two ways: especially good behavior and/or aggression. When his behavior changes there is caution about why.

This is more frightening because this summer he had two surgeries in 47 hours and ended up on the ventilator for 9 days in the Critical Care Unit. Knowing his past difficulty with recovering much less serious illness it seemed unlikely he would recover. However, thanks to Dr. Mike Masterangelo, Dr. Harliss and Dr. Jacobs and a lot of prayers he came back better than I ever dreamed possible.

Dr. Masterangelo kept me hanging in there when I wanted to give up. Reflecting on that this morning I realize we wouldn't have had the wonderful day together that we had yesterday if it were for Dr. Mike and his helpers.

I am thinking about the post I wrote a couple of days ago relative to planning for adulthood and the time I can no longer take care of Billy Ray. Because it is my birthday today I am reflecting on his care if I am not here. I am more confident because of the documentation system but there is always the nagging questions.

Time for a second cup of coffee.

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