Tuesday, May 31, 2011

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.

Friday, May 27, 2011

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.





Thursday, May 26, 2011

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

Wednesday, May 25, 2011

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.

Tuesday, May 24, 2011

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.