Jury Duty

Yesterday, I had the privilege of being called to serve on a jury. I had been called two times before but in those cases I didn't actually get to the process. The first time, the defendant plead guilty right after all the people called had arrived so we were sent home. The second time, they changed the dates of the trial and I was going to Indiana for undetermined amount of time (we ended up staying 2 months).
I was really excited to be called because I wanted to really see the process. Watching crime shows on TV are not the same as actually sitting through an entire trial. The trial was short and deliberations were even shorter but the whole thing still took almost an entire day.
While sitting through this, I got to thinking. What would it be like for someone with Autism to sit on a jury? I'm one of those people who have Autism symptoms - like I can't stand for someone to tell me the "rules" and have no one follow them. For example, I worked at a nursing home. We'd have classes once a week where we would learn how to transfer patients and various other techniques. No one actually used those techniques in the nursing home and it drove me nuts. I couldn't function. I was in trouble because I would complain. I complained because I didn't understand why would they train us one way and not have us actually do the work in that way.
This is a skill that helped me on the jury. We were told that our job was to see if the evidence supported the law that we were given. In this case, the law was Washington State's definition of assault and culpability.
It was very black and white for me. There were no feelings involved just facts - did the facts support the state's definition of the law. We felt that they did.
The case was a young man had been drinking. He was taken into protective custody and proceeded to spit on an officer and a nurse. It may seem like a silly case, it did to me in the beginning, but the law says that spitting with the intent to harm is assault.
There was no disagreeing that the young man spit on the officer and the nurse - the question was did his intoxication make him responsible for his actions. This brought me back to Autism as well (I think I have Autism on the brain). I remember hearing a case of a young man with Autism who had assaulted his parents. He was found guilty even though he was mentally impaired. I know that there are situations where a person absolutely can not tell right from wrong. These cases are ones where the individual is so mental impaired they can not control their actions. One example used was a patient with Alzheimers. I have worked with Alzhiemers patients and they are not always aware of what they are doing. They do turn violent because the disease changes the way their brains work. Most of the time (if not all of the time), they are not even aware that they were capable of such acts. I remember a case of a man with Alzhiemers who killed his wife in a fit of rage. He couldn't understand where she had gone.
In those cases, I would understand that the defendant was not capable of controlling their behavior. Children with Autism may not be able to control their feelings but they understand what hurts and what doesn't. They make choices as to how they behave. They can swing out in anger but they choose what they swing out at and if they make contact. Xavier chooses words that he know will hurt when he yells because he wants to inflict pain. He wants us to know he's hurting and we are responsible. (We're not always responsible but he sees it as that way).
We hold him accountable for his actions and he can't choose his brain chemistry. Back to the case, yesterday, that young man chose to drink and drink to excess. I think he's lucky that all he did was spit. What would have happened had he actually hit someone or hurt someone? What would have happened if he had killed someone?
I'm glad that he didn't and maybe he'll learn a lesson. Me - I learned a lot. I learned that lawyers can ask the same question 20 times and be shocked that the answers are the same (or create confusion so no one knows what he's asking anymore). I was reminded of that Albert Einstein quote "The definition of insanity is doing the same thing over and over and expecting different results."

Xavier update

Things are going really well with Xavier. He's been on the medication for a little over 3 weeks now and his behavior has been well controlled. He's still a teenager but his emotional responses are normal. He doesn't seem to be as angry as he was before. He's swimming lots. He still attends church (just we're not always making it through the entire service - sacrament and sunday school). He likes spending time with his new scout troop/youth group.
Today he woke up with a horrible headache so he missed his adventure/challenge course group. He'll catch up with them tomorrow when he's feeling better. A small bug has been working it's way through our family. It's not the kind that really make you sick but you just feel blah for several day with minor symptoms here and there.
We've been experimenting with going more natural with household products. A friend of mine suggested we try soap nuts. I made up shampoo and soap with the soapnuts. I don't mind them except my hair is going through a weird shampoo withdrawal but Xavier hated them so he's back to bar soap and regular shampoo.
Our garden is going okay - it's still green but not a lot of growth. Xavier and I planted a strawberry plant last night and Wednesday I am going to add manure and more soil to the plot while Xavier is at scouts. It will get there. Xavier is excited for the blueberries to get ripe but it looks like we'll get strawberries first (there are 3 berries and they started to get red yesterday).
Good things are happening and I'm excited.

Growing up and still mama's little boy

Last night Xavier snuggled up to me as I laid in bed. I asked him where my little boy had gone and he said he was right there. He would always be my little boy. At times like this it's hard to think of Xavier growing up.
I follow a blog written by women who have a family member with what they call a hidden disability. This includes children with Autism. It's an interesting blog and often gives me inspiration of new things to try with Xavier.
I was struck by a conversation about redirecting young men's behavior when it came to interacting with their mom. They talked about training their son's not to hold their hand in public or to be so snuggly. They had good reasons for this. They wanted their sons to learn how to interact with members of the opposite sex and to develop a certain amount of maturity.
I talked with my husband about this and he just thought I was over-reacting when I expressed my concern for holding Xavier back. He didn't see anything wrong with letting Xavier hold my hand or snuggle with me.
I talked with my mom. She said that when my brothers were born, she knew that she was going to accept every snuggle, hand holding, sign of affection for as long as my brothers would offer them.
So I talked to Xavier. Conversations like this are always a struggle with Xavier because I think they sort of embarrass him. They shouldn't because I want to know what he thinks, how he feels. I think it's just too much work to talk about his feelings that he just doesn't want to. He told me he was just fine with how things are.
I got to thinking. Xavier gives me cues when he's not wanting to demonstrate affection. He doesn't always hold my hand in public, especially if someone from school might see. He doesn't mind me kissing him in front of his friends - I know because I ask him before I kiss him.
I'm his mom and at this point in time, I think it's okay for him to demonstrate affection how he's comfortable. He does have this terrible habit of wanting to chew on me when he's uncomfortable and that's something we're working on redirecting (because it hurts).
If he wants to hold my hand until he's forty, I don't think I'll object (he will be married and living on his own at this time so it probably won't happen all that often).

Babies

My brother and his wife had their baby Tuesday night. Their bundle of joy was named Bianca and she is so precious. Xavier is baby crazy so having a new baby in the family is great. He loves to play with the little kids but has such a knack with babies. It's one of those fascinating traits about Xavier - he's so busy that you can't imagine his patience when it comes to small beings who need a little less activity. He can sit still and watch barn kittens or bunnies.
My mom is going to see the baby and new parents this weekend so it does mean not really having her around for the holidays. We promise to forgive her if she brings back lots of pictures. I'm looking over the budget to see if there is any chance of taking a Seattle trip this summer. We'd love to go see the baby even if it means a really tiring trip.
I'm bouncing around today because I don't really have a good topic for today's post. Xavier will be meeting with Dennis who will be the family therapist and we will meet with him Tuesday. I'm excited for this and hope it's rather successful. Since Xavier has been on the Risperdal, we've had far fewer problems with his behavior. We're working on tapping but at this moment Xavier is not really open to it so I don't want to share the procedure if it's unsuccessful. I may share anyway because I have noticed that it really makes me feel better and calmer. The goal is just to keep mentioning it to Xavier is short increments so that it becomes something that he just does instead of trying to "force" him into using it. The last time I suggested it to him, he just showed me he knew how to do it and didn't say anything so this might work.
I've been seeing "ads" around campus looking for volunteers to help at Orphan Acres which is a horse rescue farm. I keep forgetting to talk with Xavier about it but I think it might be something he'd enjoy helping with. He has a knack with horses and I could tell how attached his therapy horse was to him. The horse kept nuzzling Xavier and no one else. Everyone was so impressed with his work with his horse. The program was a couple of hours a week for 9 weeks and the last day the kids show their skills off. Xavier's horse did everything he asked it to do with no problem. In fact that was part of the problem because they were demonstrating how they work with uncooperative horses and Xavier's horse was completely cooperative. It was so great to see.
Xavier says he wants to grow up to be a crazy cat man. We watched the original Clash of the Titans this past weekend and Xavier was in love with the older man (the playwright whose name I can't remember now). That man had cats and kittens all over his room. As soon as Xavier noticed it, he exclaimed that that's what he wanted to be when he grew up - a crazy cat man and was so glad that someone else was one too.

Challenge Course

Xavier has done his two days at the challenge course for this month. He is loving it. His friend Mariah is also doing the challenge course so he has someone to buddy around with.
I rather like Mariah. We've known her most of her life so it's really nice for Xavier to have a friend like that. She's a year younger than Xavier so they will not be in school together next year and they are both sad.
According to Xavier, the challenge course was easy. I should probably ask Anna how he does. Xavier has a tendency to step away from the hard problem solving especially in a group setting. On his own, Xavier is always thinking about creative ways to do things. He's big on finding random objects for "projects". Most of the time he likes to take things apart and figure out how they work and go together. He's got some interesting imagination - he can connect with stuffed animals and action figures but not create things that are not there.
I know that at the Scout Challenge Course Xavier often wanted to hold back and not really participate. I think some of that has to do with his inability to really connect with the boys in that troop - we'll see how things go this fall with the new troop.
So many little things going on. I will try to remember to share all the things. I am going to start teaching Xavier to do "tapping" which is a therapy that has the person invision positive thinking while tapping on particular body parts. Rob and I took a class years ago and I recently found a book about it at the library.

So little time...

It's been a crazy couple of weeks in the Thompson house.
Over the weekend of June 18-19, Rob and I helped my mother move from her house to an apartment in Pullman. It was not a well put together move and there is still so much to do. We did get most of the furnishings moved and most of the stuff in the house packed. Xavier spent the weekend with his Papa killing zombies. We were quite tired and so stressed with the move that we barely got any time with Xavier that weekend. He didn't mind.
Monday, June 20th, we got a call. My mother was in the hospital. She had had chest pains that went away when she took her nitroglycerin. I spent the morning in the hospital with her while Rob was home with Xavier. Xavier wasn't worried so I should have known she was alright. The doctor's couldn't find any evidence of heart damage and she was sent home at about 3. The doctor suspected the move stressed her system - she wasn't eating like she should and not taking her pills because everything was still packed.
We helped her unpack and find her medications so she could recover. My mother now lives in the complex next to us for the next month while she gets into more permanent housing. It's really nice having her in town. Xavier likes that he can walk to her house. It looks like she's going to move not very far from my dad so Xavier will have both of them close.
Tuesday, the CFI social worker came to our house to fill out paperwork. She was very nice but Xavier didn't really want to talk to her. He spent a lot of time trying to hide in the cushions of the couch.
Later we went to the doctor to talk about his medication. Xavier was still not feeling chatty about his therapy needs. He did want to talk about the large map on the wall with the pushpins (the pushpins represent places patients have come from).
The doctor is keeping Xavier on the .5 mg dosage and we'll wait and see what happens.
We're supposed to meet with the CFI therapist soon. In the meantime, Xavier is spending today and tomorrow with Anna at a challenge course. The program runs 2 days a month through the summer with an extra "fun" outing. In the past, they have gone rafting but this year they may go to a waterpark.
Xavier is swimming every chance he can get. He loves being at the pool. It's been rather cold here off and on so some days he's outside and some days he's inside, depending on which pool is open.
This past weekend, we had family time at home. Saturday we cleaned house and Sunday we planted the garden. We put Blueberries and herbs in Xavier's plot and tomatoes, peppers and watermelon in the other plot. I felt it was better to put plants that we will keep next year in one plot. We are on the lookout for sweet banana peppers, pickling cucumbers and strawberries to fill out the gardens. They aren't pretty but I will take pictures to share.

Back to the Doctor

Xavier will have to go back to the doctor. He's not really excited about this but right now we have great medical coverage so I'd rather get it all done while we can.
He did go to the dentist last week - I believe I forgot to mention that. Xavier has great teeth genetics so no cavities yet. The dentist doesn't think he will get cavities since there haven't been any and no sign that he will need braces. Xavier has one tooth out of line but the rest are perfect. There's no need to correct that one tooth and Xavier likes it just the way it is. The bad thing is Xavier is not really good at brushing his teeth. We have given him more control over his hygiene instead of standing over him while he gets ready but we may have to be more hands-on. I don't know what it is about teeth brushing that Xavier doesn't like but he really doesn't want to do it. We've switched him to Toms of Maine which is not a bad toothpaste. I hope that a more natural toothpaste might appeal more to him. Since the dentist is sure there won't be cavities there's no more threat of fillings to convince him to brush. (Ideas would be greatly appreciated).
Next Tuesday he goes back to Dr Hall to talk about the medication. I just don't feel comfortable not making the appointment after getting the medicine in an emergency.
I talked with Anna, X's therapist, yesterday. She has recommended that we try CFI which is a different sort of therapy that is done in home with the whole family. I like this idea because it gets us all on the same page and someone who really knows what they are talking about creating a plan instead of Rob and I trying to piece together our own therapy program. She said we should put any schooling plans on hold and talk with the school in the fall. She works closely with Xavier's school but it seems that we need a better person in charge. Xavier did have multiple members on his team but no real leader so not all the information was being shared across the board. There were issues that Rob and I were working on with the school that Anna didn't know existed and vice versa. Unfortunately we can't do anything about it now but we can learn to be more communicative. We didn't really talk much to Anna this year and I think it harmed Xavier's ability to get help. We'll have to make sure we touch base with Anna on a regular basis.
Meanwhile Xavier will work with Anna in a group setting a few times this summer doing challenge courses and some sort of trip. He hadn't worked with Anna last summer because he was doing so well so he's excited to return to the program. In the years past they have gone on an all day rafting trip but they may do something different this year.
We meet with the CFI coordinator on Tuesday as well. We're excited to get this ball rolling.
Xavier will have his first trip with Anna on the 27th and he's already excited.
We had a rough start to the summer but I think we're still on task with trying to find a good therapy that works for Xavier and will help him be successful in high school. I did talk with Anna about Xavier going through "the change" and how we will have to monitor that while we are working on his PDD/ADHD issues. Puberty is tough for anyone but add that to a mix of other issues and this is going to be one bumpy ride.

Rage

When Xavier was about nine years old, he began to have these episodes where he was absolutely uncontrollable. At first, it was easy to mistake them for temper tantrums but soon we noticed that it was something more. One afternoon while I was alone with him, he threatened to kill me. There was something really cold in the way he said it. I was able to pretend that it didn't bother me but it did. I was suddenly afraid of my child. It was at that time we realized that Xavier needed medication.
Years pass and last year, at this time, Xavier's doctor had us wean him off his medication. I didn't really understand why but I was all for it. I am not exactly anti-medication but I always feel there is a better way to treat behavior than with a pill.
For the last month, Xavier's temper tantrums have been getting worse. We're learning that Xavier is not functioning without medication. He really doesn't want to be medicated and we want to be better parents. To be honest, I was sure we were doing something wrong when Xavier has these tantrums. And maybe we are but something more is going on.
Last night, Xavier refused to use his table manners at dinner. At 14 there is no excuse not to display some ettiquette while eating. We decided that he needed a time out to think about what sort of behavior he needed to have at dinner. His behavior went beyond a simple tantrum and into uncontrollable violence. I am sure there were better ways to handle the situation but Rob and I didn't know that it was something more at the time. We tried to send him to his room but he refused to stay. He hit his father with the intent to really hurt him while Rob was trying to get him to just take a time out. He threw things but it wasn't until he grabbed me around the neck that I realized that something more was going on. Xavier was out of control.
We started with calling his therapist but no one could really help us. The woman on the phone said if it got too bad, we should call the police. I don't want to be that parent - the one who calls the police on their child. I can't help it but I don't want the neighbors to know how out of control he is and I just don't see that as a real solution to the problem. We were able to get a doctor from the medical practice to write a prescription for risperidone. It was one of the medications Xavier was on last year.
Poor Xavier, he was starting to come down from his episode at this time and was making promises to work harder on the Feingold diet. He had had some apple juice and was sure that it was what happened since apples are not allowed during stage one of the diet. He was afraid to be touched because he didn't want to hurt us. He was sweating profusely. I knew in my heart that this was something more than just behavior. Xavier is not a bad kid. He's not a violent person.
We are putting him back on the risperidone at a tiny dosage. Even when he was on it before the doctor kept commenting what a small dosage he needed. If we can help him with this little pill then it's worth it. We'll try helping him with other therapies still.
Rob is supposed to make an appointment with Xavier's doctor and we will call for intervention services to see if there is more we can do. We've got a long summer ahead of us but the goal is to make high school successful so I am willing to do this all now.

School's Out

Xavier had his last day of middle school on Friday. He's excited for high school but I have to wait for his math grades to arrive to see what we're doing for the summer. The schools here do not offer a summer school option so it will be a home school math class. My goal is to get him into the next level of math for his freshman year of school.
My dad suggested a math learning disability called Dyscalculia. We've looked at his test scores and they aren't bad - he stays in the acceptable range but his class performance has steadily decreased over the last 3 years with his final semester at 43%. This means something is happening in the classroom that makes math difficult for him. He has hopes that he aced his math final because it will bump him up to a passable grade but it doesn't solve the problem. He's had 2 different teachers so it's not the teachers or the teaching style since we addressed that last year.
He doesn't like the math classes but he's capable.
One solution I have come up with is the home schooling programs. Legally they should meet the requirements of his math classes and allow him to choose something else to fill that time slot in school. Because he has a special education class, he loses one of his electives. By home schooling math he could have an elective back. The problem is getting Xavier to co-operate. I don't mind arguing with the school or fighting for his right to be home schooled in math - it's getting Xavier on board with doing math at home.
Back to the Dyscalculia. One of the major symptoms of the disability is the inability to recognize groups of items and their numbers. Meaning that normally a person can tell there are 3 apples on the table without counting them, a person with Dyscalculia can not. We quizzed Xavier and he didn't have a problem. In fact he was very exact with his answers. We wanted something more ballpark and he gave us exact.
In testing him, I remembered that when he was little he loved to do math in the car while on trips. I would give him simple math problems and he would try to answer them as fast as he could. So his basic math skills are fine but that Algebra is kicking his butt.
Aside from math, Xavier has quite a few plans for the summer. If the weather ever improves there will be lots of swimming. Today got a little nice but not nearly warm enough for the outdoor pool. We'll take him to the indoor pool this evening while Rob and I go to the gym.
Xavier hopes to finish his requirements for his Eagle Scout rank. He zoomed through all the requirements to get to Life and then stalled on Eagle. The biggest part of the Eagle rank is a project. Xavier had a great project in mind but it was far larger than he could really manage (and kept getting bigger). His new scoutmaster has an easy project for him and if it all works out he will have it done by the 4th of July.
Xavier isn't really interested in doing the reading program at the library but we've come up with our own reading program for the summer. Xavier picked out 12 books that we own that have been made into movies. We both will read the books and then we will watch the movie. They are a mix of middle grade and young adult books. I have a list of them on my reading blog.
Rob is home with Xavier this summer so they have lots of cooking plans. Rob is working on a cookbook and helping out with a recipe website so there should be lots of experimenting going on in the house. Maybe we'll talk Xavier into making his own cookbook for Christmas gifts.

Visit with the doctor and summer planning

We took Xavier to the doctor on Monday to talk about treatment options and to see if the doctor would be supportive of alternate therapies. The doctor had a med student shadowing him so it was a packed house. Xavier was really cool with the med student and they talked about how she was a UW student (we are a WSU family). I have to say I really like Xavier's new doctor. He listened to all our plans and took notes so he could do some research on the therapies we wanted to look into. He's willing to talk with Xavier's Neurologist to get medication information. Xavier would really like to avoid medications. We have put him on a slew of supplements - multi-vitamin/mineral, lobelia, melatonin, probiotics and an omega blend. He was worried that the omega blend would have fish oils but it turned out to be all vegetarian so he takes his supplements without arguing. He understands that if this works then he won't have to take medication.
School gets out on Friday so we're starting to plan Xavier's summer. This summer Rob will be home, at least most of the time. Rob is trying to come up with a way to work from home so he can be around more and to do something that he loves. We don't know what will happen but it's a relief to have someone to watch over Xavier. Xavier can stay home by himself - he did it most of last summer but he spends his time snacking and watching tv because he can't really leave the house. We tried to set up some activities but without an adult to see he got to where he needed to go he ended up missing out. As I am writing this, Xavier is supposed to be coming up with a plan for his summer. I was going to enroll him in the library volunteer program but he swears he's too busy to do the library work. He wants to work on being more fit and to do cooking experiments with his Dad. He's, also, working towards his Eagle rank with the Scouts and has a few merit badges to work on. He may have an Eagle project in the works if he can put in the work to get the credit (it's designing and installing a flag pole in our apartment complex - his new scoutmaster is also the maintenance man for our complex). He has a lot of plans but I want him to come up with a way of completing the tasks he needs to. He has until the 25th to convince me that his plan is better than my plan (that's the last training for the library program). I think he'll have a good summer, I just don't want it wasted in front of the tv.

Rebuttal - of sorts

I got to thinking about my post yesterday and had really wanted to add things to it. The post was already getting long and I like to keep them on the short side. I don't want to give the impression that we aren't good parents or that Xavier is completely incapable. That just is not true. We are caring parents with a wonderful boy but we have problems just outside of the norm.
Xavier is highly intelligent and has always been one to decide when he developed a certain skill. At three months, he decided he didn't like breastfeeding and wanted a bottle. At a year, he gave up the bottle for a cup. Both situations were instant - once he was done he was done. However, he had a pacifier until he was six. He was good about not taking it to school but he needed that comfort. Potty training was a completly different story - he did not want to potty train. Even in kindergarten he was having problems until we stopped allowing him to come home after an accident. His caregiver had been bringing him home to clean him up and since class was only a half day it never made sense to take him back. One day, she decided to clean him up at school and send him back to class. That took care of that problem but we still had to put him on a bathroom schedule to prevent accidents at home. It didn't bother him to be wet and going to the bathroom would interrupt his play. The schedule lasted a couple years until he got tired of the constant interruptions (and I think he matured just enough to figure it all out).
As for life skills, Xavier has been self sufficient in the kitchen since he was 2. This may seem like a really young age but I needed him to be able to be a little self sufficient since he was not much of a sleeper. He did fine on 3-4 hours a sleep at night, I was exhausted. By teaching him to fix his own breakfast and snacks I would get an extra hour or two sleep in the morning. At this age he was also very good at turning on the tv and finding ways to entertain himself. We had to have chain locks on the doors to prevent him from going outside but it worked.
At about age 10 Xavier started getting the bug to create his own recipes. He had been cooking and baking for ages by this time. He and I developed some recipes together and now he does a competative Dutch Oven cooking event every year. Last year he designed one of the recipes on his own. We're going to play with it a little for an upcoming Betty Crocker competition.
Xavier does his own laundry and cleans his bathroom. Not well and not without guidance (mostly just reminders to do the work). He can wash dishes, load and unload a dishwasher so he's got a lot of skills for living on his own.
I was really proud of his ability to be aware of the world. Every morning he sits and watches Good Morning America with his Dad and I. Xavier likes to discuss the show and often records it when he sees things he wants to know more about but has to go to school. He had some pretty strong feelings about this last presidential election that were totally different from his Dad and I's. If he could have voted he would have voted for someone different from us, it was a little weird and we weren't sure of his reasons but it was nice to see he was thinking it through.
He's very supportive of charities and has a strong sense of injustice - he was totally crushed when we found out that the guy from Stones for Schools was a fraud because it was a charity program Xavier supported whole-heartedly.
I think a good description of Xavier's charity work would make for a great post in the near future.
Xavier's biggest problem is his focus. He can be very focused to the point of obsession or he barely focuses at all. I think the trick is to learn how to make this work for him.

Raising Respectful Children (pt 1)

I'm currently reading Raising Respectful Children in a Disrespectful World by Jill Rigby. The book was given to me a few years ago as a gift. It's not a bad book but the author does have a tendency to get overly religious and preachy in spots. I'm nearly done with chapter 3 and have already found some really useful bits.
In chapter 3, the author talks about the different ages/stages and how a parent should "lead" during those stages. She, also, talks about different questions children are seeking out during those stages. I like this bit.
I want to share some of the things she says.

Ways to discipline with love:
Speak in a firm voice without sarcasm
Say to your child "I love you too much to allow you to..."
Don't berate your child, but correct the misdeed
Don't lose your temper
Turn a negative situation into a positive situation

What should authenticity look like:
Be the same on the inside as you appear on the outside
Don't say one thing and do another
Be honest in your business dealings
Don't show hypocrisy

Connecting with your teen:
1. Allow your child to experience consequences of poor choices.
2. Allow mistakes to mold character.
3. Ask thought-provoking questions.

Helping your teen succeed at being in charge of their life:
1. Put teens in charge of developing their own talents.
2. If you haven't given cooking lessons yet, this is the time to start.
3. Ask your teen's opinion on current events.
4. Encourage decision making.
5. When mistakes are made, don't rescue your teen; instead, help them resolve the problem.
6. Help teens develop goals and develop a method to accomplish those goals; then step back and watch.
7. Wait to be asked your opinion.

I have a problem being a very hands on parent that I forget to step back and let Xavier take the initiative. It's a tough balancing act with him because if we completely step back then he's not able to fully step up. I am learning to teach him how to self regulate but then I'm still working on that with my husband (apparently I have taken on way too much responsibility with them and they forgot how to do it).
I think it's a problem with mom's in general. We have a tendency to be efficient and then take over everything without thinking about the consequences. My mom was one who always cut our meat. It wasn't because she didn't think we could cut our own but it was her way of making sure everyone got a fair share of the meat. When I was an adult, I didn't know how to cut my meat and the first dinner date I made I cut the meat in the kitchen (poorly) and brought the plates out. That was how it was growing up. We eventually all learned how to cut our steaks in public with no embarrassment but it's just a reminder of all those little things we learn growing up.

Xavier and God

Last night the Mormon missionaries came to visit. They are really nice guys who really are not much older than Xavier so he likes when they come over. The missionaries often like the same things Xavier likes. Last night, one of the missionaries blindsided Xavier with the toughest question he will ever face. What did Xavier think about God and what did he believe? This was not unlike a completely horrible conversation that Xavier and I had after church on Sunday.
Xavier has very strong feelings about religion and has translated that into his belief in God. Xavier does not like church. He says he believes in the scientific order of things which fits his very analytical personality. Talking about God with Xavier is really hard because he gets so aggitated. The conversation was really interesting for me as an observer but I got the impression it was not a comfortable conversation for Xavier. (I didn't jump in because I believe life is hard and sometimes it's best to learn that when you are safe and can be comforted.)
I got to thinking about some of the reasons that believing in God is hard for Xavier and I think I am beginning to understand. I can't say for certain what Xavier is thinking but I can attempt.
1. God is boring. Think about this from Xavier's perspective. God equals church. Church means sitting in an uncomfortable chair for an hour (or so) while people talk in very monotonous tones. As an adult I have a hard time sitting through Sacrament without wanting to take a nap. On top of that, Xavier doesn't understand the concepts that they talk about because most of the talks are based on knowledge they assume everyone has. Then add to that the clothes. Sometimes Xavier likes his dress-up clothes but wearing the same or similar outfit every Sunday loses it's appeal.
2. God has too many rules. I didn't realize that Xavier didn't understand that all God really expects is for us to make the best decisions possible. I, personally, don't know what happens after we die and I believe that even if I never go to heaven I still want to create the best life possible here on Earth. I want to be happy and have blessings. For Xavier, heaven is a really hard concept. He's already struggling with the idea that in four years he might be going to college. He understands the mechanics of college because we live in a college town but he doesn't understand that his actions over the next four years may prevent him from attending. He doesn't seem to understand grades and the points that go with them. It's far too "fairy tale" for his mind. There's nothing tangible. Xavier's never been one that really understood rewards and consequences - they were just parts of life that didn't really have any merit (I don't think he can quite connect the dots). He understands science - if I drop a penny in a glass of water, it sinks. How do you teach a child who doesn't understand immaterial consquences the concept of heaven? I try to explain that it doesn't matter but he gets stuck on that.
3. God makes bad decisions. Xavier doesn't deal well with death and can't understand why God would allow the death of someone he loves. If God is so great, then why does he allow there to be so much pain. You can argue all you want but Xavier still won't understand.
There is a story that popped into my head that helps describe Xavier some. Rob, my mom, my aunt and I all got tickets to see a touring broadway show. My aunt told Xavier - "We're going to see The Producers." Xavier replied, "What do they produce?"

Update

There are some things I thought I should share so that they don't seem left in the void.
We recovered the money that Xavier took from his Papa and he returned it with a written apology.
Xavier went out on Saturday and worked hard for two hours to clean up all the glass from the broken windows. He was really well behaved about the whole thing. He worked out payment arrangements. His total for the damage was $80 and he will pay when he gets his first check of the month. He has agreed to write an apology.
We have been working hard to clean out all the non-Feingold approved foods. We were surprised at all the artificial ingredients in our food. Despite that, we didn't end up with empty cupboards. Most of what we buy is ingredients for recipes not complete products - like canned beans instead of canned soup. So there wasn't that much. We're offering the food to family members first because not everything can be donated and then we will donate what we can or find friends who can use them.
Xavier had no problem going to church on Sunday but did have to leave early because he didn't have the right stuff to participate (he needed a laptop and we didn't know). He was very good at keeping himself in check and recognizing when he needed a break. The Sacrament can be boring and he sat for as long as he could and then told me he needed to go out in the hall because he needed to be fidgety. I think this is an amazing improvement now if only we can get him to speak up with his teachers and get them on board with giving him fidget time. High School will be such a big change.
We went to the library and checked out about 5 books on children and anxiety. There is some really good information but the more I read the less I think anxiety is a problem for Xavier. I know he has this paralyzing fear of needles which we will work on desensiting but I don't see where the anxiety is really a problem. Xavier is very much a go with the flow kind of guy so that is way cool. I had to tell him how much I appreciated that quality this weekend because it's not a common trait for children with Autism or PDD.
He's still having some temper tantrums and lost his bathroom door for a couple of days because he locks himself in the bathroom to get away from us. This usually happens when we need to go somewhere he doesn't want to go or when he has to do a chore. I wanted him to lose his door as a consequence because I wanted him to see that 1. I was serious and 2. he needs a better coping mechanism.
Xavier has discovered he likes his room empty. He emptied everything out of his closet but his clothes and is working on building a nest. I am quite supportive of this little hide away so long as his shirts remain hanging. When he goes to his room, he's in his closet reading.
He doesn't seem too interested in getting his stuff back so we're going to give it a little more time and then have him decide if he really needs it all back. It would be nice to get rid of more clutter. We have no expectation of him giving up everything but he has never really been a toy playing kind of child. He loves his Legos and his books. The rest of the stuff just becomes a sort of mess that he likes to create.
School is almost out so we're in for a big change. We're working on limiting technology time so that he does other things. He's picked out a garden plot in the back of our complex and has been discussing what type of plants he wants to grow. He wanted to do an entire plot of watermelon but watermelon doesn't grow well in Eastern Washington. He's looking at strawberries and some herbs. We started some tomatoes, pumpkins and cucumbers in the house (possibly some others that I have forgotten). Last year our garden was such a flop between bad soil and worse weather. This year we have all new raised beds with new soil so that we can have a better foundation for the garden. I am trying to talk Xavier into some blueberries and rhubarb but I may just have to do that in my own plot.

Learning to Shave

The other night, Xavier took a shower in our bathroom (we had company and our bathroom is in our room). He came out with shaving cream around his ears. He told us that he was playing with the shaving cream and used his finger. When I went to shower I discovered my razor full of little blond hairs and shaving cream (Rob suspects the hairs are actually from Xavier's head not face as he shaved his face).
Because tasks like shaving require a certain finesse to prevent injury I asked Rob to teach Xavier to shave. I announced I wanted pictures too. Xavier is not happy that I took pictures and less thrilled that I am posting them here. So when you see Xavier tell him how handsome he looks freshly shaved.
I can imagine that shaving will become something Xavier will want to do more often even though he has nothing to shave (he even mentioned getting a hot towel shave at the Men's Shop). He wants to grow up and I feel that if allowing him to shave will improve his hygiene I am all for it. This was the first time that we didn't have to fight with him to wash his face. He still didn't like the wash cloth on his face but it was a better washing than his face has got in a long time.
The one thing I have heard about children with Autism is that hygiene is always a problem. The same is true for Xavier. He isn't bothered with being dirty. We are constantly sending him to the bathroom to put on deoderant and brush his teeth. He works hard to make it seem like he has instead of just doing the task. At 14 this is not the biggest problem but as he gets older his hygiene will make a difference in his life.

Definitions

As I started this blog and the enormous amount of research into Autism therapy, I realized that I don't really understand my son's diagnosis. How am I supposed to come up with a treatment plan when I don't fully know what needs treatment? I can talk basics but the truth is I just didn't know what the dr's have determined what was wrong with him. Personally, I don't think there is anything wrong with Xavier - I used to tell people he had a social disease, he just doesn't fit into society. As he gets older that becomes something that is more apparent. As a toddler, I had a really difficult time explaining to the drs that something was going on with him.
So the things I know about Xavier are:
1. He has a terrible time sleeping.
2. He gets anxious and overly emotional about things that aren't really relevant (for example, he'll refuse to go into the store with us because he saw a cat that looked like our cat that died two years ago and he is far too sad to go shopping, he might even cry. or he goes to the dr's office and someone in the next room is getting a shot which sends Xavier into an absolute panic because he might need a shot even though he's there for the flu. These are made up examples but not far from the truth.)
3. He has a very difficult time staying focused.
4. He has a need to constantly move. When he was 4-5 I used to use his tv watching as an example. He would watch tv, absolutely focused mentally (I know I just said he lacks focus but tv is mesmerizing) on the show but his body would be up in the middle of the floor dancing even though the show doesn't have music. Now that he's older he can spend some time holding still but not much. He spins in chairs or taps fingers/feet when he is supposed to be focusing.
5. He has a hard time relating to his peers. He is well loved by the little kids in our neighborhood. Even though he's 14, the 9-10 year old boys are always coming to see if he can play. We have to have lots of discussions about appropriate touch and behaviors because he is so much older now. They even want him to spend the night which we don't allow. He, also, seems to do okay relating to adults. All his teachers tell us that he loves to engage them in conversation but won't really talk to his classmates.
6. He's incredibly smart but is nearly failing all his classes. This boy has a high IQ (I don't know what it is because the therapist did not release that information to us) but is barely squeaking by with D's. He's in remedial classes and will probably have to take the same math class for the 3rd year in a row. We don't know why he can't keep up in a classroom.
7. He doesn't understand social cues nor appropriate touching. When talking about appropriate touching, I'm not saying he's molesting the neighborhood children. I'm talking about not hitting or pinching or pushing. He likes to tackle people as a sign of affection but we're struggling with letting him know that it's not appropriate - it hurts people. He'll pull on someone's arm or clothing to get their attention instead of talking to them. He's very tactile, meaning he likes to experience the world through touch, but he's 5'9" and 180 pounds which makes for a very large and sometimes painful tactile experience for the person receiving his touch.
8. He still puts inappropriate items in his mouth, such as pennies he finds on the ground or the wire from a pen. He'll take things apart so he can chew on them.
As a small child these behaviors are normal but I knew right away that they weren't but I couldn't find the words to explain.
Now that he's 14, it's become obvious to the rest of the world and now somehow I am supposed to do something about this. I'm a little frustrated because I don't know how to do it. So I thought the first thing to do is understand it. Xavier was diagnosed with Pervasive Developmental Disorder, Attention Deficit Hyperactivity Disorder with Anxiety. I had always believed that PDD was in the Autism spectrum, looking at the NIH definition I realized I had it all wrong, Autism is under PDD which doesn't really help me with anything but I can begin to realize that I was looking at this all wrong.
Here are the definitions and websites for those definitions to his diagnosis. I had a difficult time getting a real definition of anxiety but included the information for Generalized Anxiety Disorder.

The diagnostic category of pervasive developmental disorders (PDD) refers to a group of disorders characterized by delays in the development of socialization and communication skills. Parents may note symptoms as early as infancy, although the typical age of onset is before 3 years of age. Symptoms may include problems with using and understanding language; difficulty relating to people, objects, and events; unusual play with toys and other objects; difficulty with changes in routine or familiar surroundings, and repetitive body movements or behavior patterns. Autism (a developmental brain disorder characterized by impaired social interaction and communication skills, and a limited range of activities and interests) is the most characteristic and best studied PDD. Other types of PDD include Asperger's Syndrome, Childhood Disintegrative Disorder, and Rett's Syndrome. Children with PDD vary widely in abilities, intelligence, and behaviors. Some children do not speak at all, others speak in limited phrases or conversations, and some have relatively normal language development. Repetitive play skills and limited social skills are generally evident. Unusual responses to sensory information, such as loud noises and lights, are also common.
http://www.ninds.nih.gov/disorders/pdd/pdd.htm

Autism (sometimes called “classical autism”) is the most common condition in a group of developmental disorders known as the autism spectrum disorders (ASDs).
Autism is characterized by three distinctive behaviors. Autistic children have difficulties with social interaction, display problems with verbal and nonverbal communication, and exhibit repetitive behaviors or narrow, obsessive interests. These behaviors can range in impact from mild to disabling. Autism varies widely in its severity and symptoms and may go unrecognized, especially in mildly affected children or when more debilitating handicaps mask it. Scientists aren’t certain what causes autism, but it’s likely that both genetics and environment play a role.
http://www.ninds.nih.gov/disorders/autism/autism.htm

Attention deficit-hyperactivity disorder (ADHD) is a neurobehavioral disorder that affects 3-5 percent of all American children. It interferes with a person's ability to stay on a task and to exercise age-appropriate inhibition (cognitive alone or both cognitive and behavioral). Some of the warning signs of ADHD include failure to listen to instructions, inability to organize oneself and school work, fidgeting with hands and feet, talking too much, leaving projects, chores and homework unfinished, and having trouble paying attention to and responding to details. There are several types of ADHD: a predominantly inattentive subtype, a predominantly hyperactive-impulsive subtype, and a combined subtype. ADHD is usually diagnosed in childhood, although the condition can continue into the adult years.
http://www.ninds.nih.gov/disorders/adhd/adhd.htm

What is Generalized Anxiety Disorder?
Generalized Anxiety Disorder, GAD, is an anxiety disorder characterized by chronic anxiety, exaggerated worry and tension, even when there is little or nothing to provoke it.
Signs & Symptoms
People with generalized anxiety disorder can't seem to shake their concerns. Their worries are accompanied by physical symptoms, especially fatigue, headaches, muscle tension, muscle aches, difficulty swallowing, trembling, twitching, irritability, sweating, and hot flashes.
http://www.nimh.nih.gov/health/topics/generalized-anxiety-disorder-gad/index.shtml

Feingold Diet

Xavier is still progressing slowly. I know that my last post focused on the negative aspects of Xavier's behavior. It's easy to focus on the negative because that's the behavior that needs changing. There are a lot of good things about Xavier and I really hope I don't forget to share that with you. I appreciate all the kinds and supportive words I got (sorry Blogger is not allowing comments still but hopefully that will be fixed soon).
Xavier is excited to start the Feingold Diet. It's a chance for him to be more in control of his therapy and to avoid medication. He's been really supportive of this especially since tomatoes and cucumbers are on the avoid list.
Dr. Ben Feingold developed his diet in the 1950's and released his diet to the general public in the early 70's. He originally looked at salicylates (which I keep calling salactites) which is a naturally occurring chemical in certain foods and aspirin. From what I understand there was a theory that a build up of this chemical in the body caused medical symptoms. He started using a salicylate-free diet to treat his patients and noticed a side effect of the diet which reduced and eliminated behavior issues. Dr. Feingold, also, began doing research into certain artificial additives in our food and noticed that they were contributing to behavior issues and hyperactivity. Slowly, his Feingold Diet emerged from his research.
There are many things I like about this diet as a therapy. There is nearly 60 years of research supporting this diet that includes documented medical studies. There's nothing overly bizarre about the diet unlike some of the other therapy diet I have looked at. And the research done by the Feingold institute has gone on to be the supporting cause for certain chemicals being banned in our foods (more in Europe than the US).
There are two parts to the diet, one is a permanent change and the other is a temporary change. The diet asks that you eliminate salicylates (actually a specific list of salicylate foods) for 4-6 weeks and if then slowly re-introduce them. If the symptoms remain absent or reduced then you can continue to eat those foods. The permanent part of the diet is to remove all artificial food coloring, artificial flavors and 3 preservatives: BHT, BHA, TBHQ. The Feingold Institute offers an amazing amount of support and current research.
The salicylates to avoid are: almonds, apples, all berries, cherries, currants, grapes, nectarines, oranges, peaches, plums/prunes, tangerines, tomatoes, cucumbers, peppers (bell/chili), cloves, coffee, tea, and menthol. Of course, all medications with salicylates which includes aspirin and some stomach medicines. Medications are required to have salicylates warnings so they will be easy to avoid (and we don't use a lot of medicines to begin with).
We are slowly eliminating these foods from our diet with a target date of June 10th to completely be free (the first day of summer break). We will be able to re-introduce the salicylates at the end of July which coincides with most of those fruits and vegetables accessibility. We look forward to cherry/berry picking in late July so they will most likely be the first that we add back into the diet.
We're growing gardens this year with the hope of having some fresh produce to carry us through the remaining summer and into the fall. Xavier has asked to rent his own plot so he can grow melons. I think he will have to start looking for melon plants since I didn't start any (this week was the first time he mentioned growing melons).
You will notice that sugar is not a factor in the Feingold diet. Feingold's research has suggested that the sugar is not a culprit in hyperactivity but the artificial components that make up so much of the candy today.
We'll keep you posted to see how it goes.

Sent to prison

I may not win a mother of the year award but I have faith that I am doing what is in the best interest of my child. Recently, Xavier's behavior has been getting out of hand. I have had to do some serious soul searching to understand, not only what is happening but how to proceed. We've been discussing the Feingold diet and other therapy options but haven't gotten to that place where we have actually started to do anything. A few weeks ago, Xavier stole money from his grandfather. The bill was a 1930-something $10 which didn't look like normal money. We talked to our bank who had us turn the money over to the police in case it was counterfeit. Because of this, we had an interesting story to share with friends and family. The police called us to say it was real and we could have it back. Before we could pick it up, my father had realized it was his. That was the first sign that we needed to step up our parenting.
Xavier's counselor had suggested to my husband that it was time to put Xavier on medication. He'd been taken off all meds last summer so I wasn't ready to jump on that bandwagon again (more on that later). I started researching but the information is so overwhelming that I was struggling with coming up with a real plan (we're talking over the last two weeks so it's not been that long).
Come Saturday, we're at a retreat with the Scouts. Rob and I had to run an errand while the boys were working on a quick service project before starting all the fun. We come back and I watch the boys work their way through group problem solving activities. The leader pulls me aside to inform me that Xavier and another boy had broken out the windows of a canopy instead of working on the service project. Fortunately, someone had caught them before they got to too many of the windows. The canopy's owner is a therapist that works with high risk children so I was glad that we had someone who understood Xavier (and had worked with him in the past). However, I was stuck with this problem. Xavier could afford to pay his part of the damage but he wouldn't learn anything. It was too much to ask this man to come up with a punishment on top of the money. We talked with him about having Xavier work off part of what he owed but we wanted the owner to get a fair deal as well. He agreed to look at the damage and get back to us. Meanwhile, how do we, as parents, deal with this in a manner that will mean something to Xavier.
I came up with a solution. Xavier had a few consequences - one he was to go to church. For most people, going to church is not a consequence and wouldn't understand how this came to be. For us, we have never attended church as a family. I wanted to teach my son about God and give him exposure to as many religions as I could so that one day he could make an informed decision about his faith, instead he declared that he didn't believe in God and refused to listen to any one talk about faith. My husband has been mad at God for so long he hadn't been to a church since his youth. I opted to take them to the church of my childhood and the same church my father has returned to. I don't expect anyone to convert but I want a religious education for my son and a chance to meet other boys who at least pretend to have good morals during the church activities.
The second is we sentenced my son to "prison". After church he was sent to his grandfather's house for a last taste of freedom. During that time, I removed all his toys and things from his room. I left his clothes, bedding, a clock, a radio and all the stuff on his wall. I felt he needed things to negotiate with. After school, he goes to his "cell" until dinner and then returns to his cell. He can check out books from the "library" but only one at a time. He can earn family tv time but most of his time should be spent in his room. He has earned back 1 stuffed animal and can exchange it for others if he's good. The goal is to reward his good behavior with the return of his privileges.
We, also, began an herbal regimin that we had been doing before. He takes 2 lobelia and 1 melatonin each night with supervision.
I have noticed something in the short time we've been doing this. He goes to bed much easier and seems to sleep better. We've started using his alarm clock and he's able to get himself up in the morning. This morning he got up before the clock went off. Before we were fighting with him to stay in bed at night and then fighting with him to get up (he was also getting up in the night to watch tv).
I look forward to seeing how this plays out. Meanwhile we are starting to prepare our house for a switch to the Feingold Diet (more on that later as well).
Check out his cell:

Welcome

This is the story of a 14 year old boy diagnosed with Pervasive Developmental Disorder (on the Autism spectrum) and how we (his parents) are trying a new (to us) approach to his life. We've had a lot of tragedy and heartbreak and changes. Suddenly we have a teenage boy who has no consistent therapy and it shows. We don't want to put him on medication at this moment so we are going to exhaust all the alternative therapies we can and see where it takes us. This fall, Xavier starts high school. It is our goal to start the year with Xavier in the best shape possible - with focus, control and commitment. I welcome feedback as I take on this challenge. I will promise you that I will do things and probably say things that you don't agree with - that's okay. I am raising my child and you are raising yours.