Beyond the Obvious

Jake has made some great advances over the past year, most noticeably in the area of speech communication/vocabulary. He speaks very intelligently, and understands and correctly uses some very big words and some abstract concepts. However, he has not mastered the back and forth of conversation, and often his talking is "TV talk" where he is in his own world talking to Sponge Bob or some movie character. If you ask him "how was your day?" you are just as likely to get an answer of "good" as you are to get "and now it's time to go to the Krusty Krab!." But, when it comes to him telling you that he wants something to eat or drink or to go the to store, etc., he's doing a pretty good job of making himself heard and understood.

It is unfortunate though, that he still has an extremely high tolerance for pain, and often will not communicate when he's hurting. Yesterday I received a call from his teacher, telling me that over the last few days he has really been acting out around recess; not wanting to go outside, and then when he gets outside he is difficult and angry. Upon returning to class, he has been going into crying fits and causing disruption. He even bit and hit an aide on Monday.

His teacher and I went through several scenarios trying to figure out what was wrong. Of course we considered the obvious that he is acting out since daddy had to leave him again, or that he was having a hard time dealing with changes in the classroom, and even that maybe going to school all day was to much for him.

After my conversation with Mrs. Burden, I started to really think about Jake and what I know of him, and I just didn't feel like any of the things we talked about were really the issue. Yes, he misses his daddy, but he's adjusted very well at home and is not showing any signs of acting out like he did in the past. He's also talking to me a lot about daddy and how he misses him, and that is new and positive. Then I started thinking about changes at school, and the one thing I couldn't get over was the fact that he is happy to go to school in the morning, and this behavior is new - something has happened very recently.

I was still pondering what was wrong when Jake arrived home from school. He came in saying, "Jake had a bad day. I got all reds." They work under a color system at school, greens mean all is good, yellows mean we had some issues, and reds mean things didn't go so great. I hugged him and started to help him get out of his school clothes and into some comfy clothes so he could relax.

He was indeed sad, and although I kept asking questions, we just weren't connecting - I couldn't' figure out what was wrong. That is until he took off his socks, and I saw his big, swollen, black and blue infected big toe.

"Jake!" I cried out, "what's wrong with your foot?"
"DON'T TOUCH IT," he yelled, "IT HURTS!" Well yes, I could see that. He had a major ingrown toe nail that had abscessed and had swollen to the point that I was thinking we might need a trip to the ER. I could only imagine how terribly painful it had to be for him to put that foot in a shoe, where the toe would be smashed against his other toes, stabbing him with each step.

Now it all fell into place - when he gets to school he takes his shoes off, but for recess he has to put them back on. Force that painful toe back into a tight shoe, where once again every step he takes will bring agony. And yet, he didn't tell anyone. Usually when he is hurting he will at least say he has an orange (he learned to tell pain in color; orange is bad, red is REALLY bad), but this time he said nothing to anyone. He just suffered through it, and when it got so painful he couldn't contain himself, he acted out, biting and punching and finally deteriorating into a sobbing mess.

I was able to doctor his toe and kept him home for the day. He is now saying that it feels much better, and it certainly LOOKS better, so that's a good thing. Tomorrow he will go back to school and I will tell his teacher what happened, and we will have solved another mystery.

As a mom, these types of incidents just rip my heart in two. Thinking that my beautiful, sweet little boy is needlessly suffering in silence is enough to just send me over the edge. I wish there was more I could do for him. I wish it was all just a little easier for him. I wish we could have a miracle.

Is Autism Cause by the Weather?

Since we live in Oregon, I was obviously intrigued when I recieved the following email today:

Autism linked with rainfall in study
WASHINGTON (Reuters) - Children who live in the U.S. Northwest's wettest counties are more likely to have autism, but it is unclear why, U.S. researchers reported on Tuesday.
Michael Waldman of Cornell University and colleagues were searching for an environmental link with autism, a condition characterized by learning and social disabilities.
They got autism rates from state and county agencies for children born in California, Oregon and Washington between 1987 and 1999 and plotted them against daily precipitation reports.
"Autism prevalence rates for school-aged children in California, Oregon and Washington in 2005 were positively related to the amount of precipitation these counties received from 1987 through 2001," they wrote in the Archives of Pediatrics & Adolescent Medicine.
Dr. Michael Fitzpatrick, a London physician who wrote "Defeating Autism: A Damaging Delusion", expressed doubt, noting that autism diagnoses are on the rise in all climates.
No one know what causes autism, whose symptoms range from severe social avoidance to repetitive behaviors and sometimes profound mental retardation.
The U.S. Centers for Disease Control and Prevention estimates that about one in every 150 children has autism or a related disorder such as Asperger's Syndrome. Rates in many countries have been rising, although that may be partly due to increased reporting and diagnosis of the condition.
Doctors agree there is a genetic component to autism. They also theorize that something in the environment and possibly conditions in the womb can trigger the condition.
The researchers said their study supports this idea.
Perhaps infants and toddlers are kept are kept indoors in front of the TV more in rainy climates, and that somehow causes brain changes, they said. Or perhaps they breathe in more harmful chemicals while indoors.
Vitamin D deficiency caused by insufficient time in the sun might also be a trigger, they said.
"Finally, there is also the possibility that precipitation itself is more directly involved," they wrote. Perhaps a chemical or chemicals in the upper atmosphere are transported to the surface through rain or snow.
"In recent years autism has been blamed on everything from discarded iPod batteries to mercury from Chinese power stations, from antenatal ultrasound scans to post-natal cord clamping, from diet to vaccines," Fitzpatrick said in a statement.
The U.S. Centers for Disease Control and Prevention has launched a long-term study to find the causes of autism and other childhood conditions.
(Reporting by Maggie Fox; Editing by Michael Kahn and Alan Elsner)

Where has the year gone?!

It seems like just yesterday I was posting about our trip to visit daddy last spring - and to my horror I just realized that I haven't provided an update for my loyal readers for half a year!

2008 has been a little rough for us; life without daddy has been difficult and living apart for so long has started to take it's toll. But despite the obvious hardships, I'm so happy to share with you that Jacobi has made some great strides this year, and continues to grow into an amazing young man.

Last week was Halloween, and we were blessed with a visit home by daddy. Jake was very excited to see his dad, and started planning for the reunion by shopping for Halloween decorations whenever we went to the store. By the time Randy got here we had indoor decorations, out door decorations, costumes, and candy buckets. Jake was ready to go!

This year when I asked Jake what he wanted to be for Halloween, I was a little surprised by his answer. I had expected him to say he wanted to be Sponge Bob, or maybe a pinata (after his favorite video game, Viva Pinata). But as we were looking through the costume catalog and I flipped to the super hero section, Jake spotted a picture of the new dark batman and shouted with glee "Batman! Jake is batman!"
"Really?" I asked, "Are you sure?"
"YES! BATMAN!," Jake replied.
"But Jake, if you go as batman you have to wear the batman MASK - and that goes on your head like a hat. Are you SURE you're going to be able to do that?"
"YES!" he shouted.

I had my doubts. At nearly 7, he's never been able to tolerate anything on his head. In fact he has never been able to wear anything on his head other then a light hood. Even when dressing him, if I take too long getting his shirt over his head he freaks out, so I highly doubted he was going to put this batman mask ON, let alone wear it for an hour or two of trick-or-treating.
But after conferring with his dad it was decided that I would purchase the costume that Jake picked out, and we'd just see what happened.

Finally the big night arrived, and as the sun went down Jake and I started to get our costumes on. When I came down the stairs I was greeted by daddy helping Jake button his cape - with the Batman mask securely over his head. As soon as the cape was latched, he ran up the stairs to check himself in the mirror!

Not only did Jake wear his Batman costume, but he trick-or-treated for nearly an hour, skipping and running and singing, and joyously waiting for the next person to open their door so he could say "TRICK OR TREAT!"

His reward for his big Halloween adventure was some much needed time with his dad in a fairly social setting, and coming home with a great big bucket of candy. Of course he won't eat it, but he got it, darn it!

We're back - and what a trip!

Jake is in love with the Eiffel Tower. Back in February, he found a photo of the ET online, and from that moment on, he was hooked. Anytime we took a drive and he would see the big electric towers, he would call them Eiffel Towers. The giant red and white ones were "candy cane Eiffel Towers" and basically anything that was tower shaped would set him off on a conversation about the Eiffel Tower.

In early March Randy and I decided that we needed to try and get the family together if even for a few weeks, so I booked tickets for Jake and I to travel to Germany to see daddy. It was a great trip and after not seeing daddy for almost half a year, it was an emotional and wonderful time.

We spent two weeks hanging out and seeing sights in Germany and Belgium, including castles and picturesque towns and expansive vistas, but by far the highlight of the trip was the day we took Jake to Paris.

We left Ramstein, Germany (about an hour outside of Frankfurt) early on a Tuesday morning. The trip through Germany was quick (gotta love that autobahn!) as well as scenic. Shortly after we crossed over the French border, we hit our first toll booth, which was 3.40 Euro (about $6). As with any time that we take a road trip, about this same time I had to use the restroom. Using the restroom in Europe is VERY DIFFERENT then in the US and they seem to come in two types - really nice and clean and you have to pay to use them, or free and really disgusting and without TP. Luckily, France seems to go the pay-to-pee route, and the restrooms were all well stocked with tissue!

Germany's rest areas are pretty basic, but France, Belgium and Luxembourg all had FAB rest areas - expansive plazas with huge Shell gas stations stocked with tons of yummy European junk food. I spent a lot of time on all of our road trips checking out all the rest area's had to offer!

After my bathroom stop we traveled through another 21.00 Euros worth of tolls, to finally reach our destination a half hour outside of downtown Paris, at Euro Disney. (We decided to park at Disney and ride the train in, so we didn't have to try and park and drive in Paris.) Once inside the outer sanctuary of Disney, we hit the train station and paid our 30 Euros to take the train into town.

Jake thought the train was pretty cool, but I don't think anything prepared us for our departure - off the train and down the tunnel and up the steps and into the light - right in front of the Arc de Triumph! It was truly amazing to be standing there in the heart of Paris, looking at the Arc that Napoleon had built centuries ago to welcome his soldiers home from battle.

We decided to try and cross the crazy busy streets to get a different view of the Arc, and after wandering around and dodging traffic for about 10 minutes, we landed in a spot that had been cleared for some construction and had a large contingent of pigeons gathered. Jake LOVES pigeons, so of course he wanted to stand there and look at them and have his picture taken. Randy and I were looking at the Arc trying to decided if we could make it to the center, when Jake suddenly shouted, THERE! I want to go THERE! We followed his pointing finger, and over the top of the buildings off in the skyline, there it was - the top of the Eiffel Tower.

We consulted our "yes, we're American tourists" giant map of Paris and realized that we were indeed within walking distance, so we set out across city streets toward our destination. The walk was pleasant and scenic (I don't think there is bad scenery in the part of Paris we were in) and before long we came to a beautiful city park and there it was, in all it's glory, standing across the river -Jake's special Eiffel tower.

We sat at the bottom of the tower and had frites (french fries) and crepes with chocolate sauce, and then we walked under the tower to one of the gift shops, where Jake bought himself an Eiffel Tower statue. Then we walked across the expansive lawn to the French Military building.

All of our walks were wonderful, the city is amazing and alive in a way I have never experienced in another city. Jake was in awe and I think he could have walked across the entire city if we would have had the time, but way too soon it was growing dark and we had to head back to Disney to claim our car for the five hour drive back to Ramstein.

When we came out of the train station at Disney, it was close to 9PM, but the Disney village was alive with diners and shoppers and the whole thing was glowing with neon and pulsating with loud disco music. We hadn't eaten much more than our snack at the tower, so we decided to walk through the village and see if we could get a bite to eat. As we came to the far side Jake yelled "I want a cheeseburger!" and sure enough, there was a McDonalds. We sat with Jake while he ate, and then we decided to hit some of the shops, so we spent the next 40 minutes walking through the village and checking out the wares in the myriad of Disney stores. Jake found a stuffed Nemo that he couldn't live without and nearing 10:30 we walked out of the Village gate and headed for our car.

Suddenly Jake stopped. "WAIT!" he shouted?

"What?" Randy and I asked simultaneously.

"I have to dance," Jake said.

Randy and I looked at each other and Jake started dancing to the pulsating disco beat, throwing his whole little body into it, he danced in circles and up and down the empty square. "I'm doing Jake's Disney disco dance!" he shouted. "I'm DANCING!"

Watching him in that square with the neon lights around him and the spotlights shooting into the air behind him, dancing with pure joy and glee to the thumping disco music was by far the highlight of not only our trip to Paris, but our entire trip through Europe. It was like at that moment he realized that he was in a special place, a place that was created for children, where they are allowed to do and be all that they can imagine, and maybe even a little more. Maybe, just maybe even an American disco dancer in Paris.

Autism Q & A Under way!

We've sent out our first series of questions for our Q&A sessions on parenting a child with Autism. If you would like to be one of our participants, please email me and we'll get you started!

Thank you Donors!

Donations have continued to come in over the Christmas season, and we are now up to $251! I know it may not seem like much to many of you, but we are truly grateful for every single penny that comes in, so THANK YOU DONORS!!

Christmas is for Kids

I hope you all had an amazing Christmas and that the new year is finding you well. Things have been quite hectic here, but I am hopeful they will settle down soon and we can get back into some kind of routine.

I was worried about Jake this year with his daddy gone, and I've been really worried about how he's going to handle my folks leaving at the end of the month when they move back to WI. It is very hard for Jake to have people leave him - once he is attached he carries that for ever and he doesn't understand why people he love leave him.

Jake has always had a really strong connection with dogs. Dogs and horses are the only animals that really seem to bring him to life in a good way - it's like they draw something out of him that helps him make connections that he normally isn't able to make.

Over the years, Jake has been exposed to dogs from puppy stage to very old hand, and he has enjoyed and interacted well with them all. During the past year and a half or so, whenever he has an encounter with a dog, he will ask Randy and I for puppy for anywhere from 1 day to two weeks after the encounter, and over the last few months his requests have grown to the point where even if he saw a dog on TV or in a car in a parking lot, he would ask for a puppy.

I am also a long time dog lover, but Randy is not, so it was a huge surprise to me when during a conversation a few days before Christmas, he said to go ahead and get Jake a puppy. It's not that Randy doesn't like dogs, he likes them just fine - he just doesn't like them in the house. In fact, he hates them in the house. Being on the Autistic spectrum himself, he likes things to be very neat, orderly and calm, which means dog hair on the furniture, dog smell in the house, and barking dog chasing cat are all very bad things. But, loving his little boy the way he does, he was willing to let a furry new friend into the house, with a few conditions.

First of all, we agreed to get a full grown dog, one that was already potty trained and had some manners. Second, since it would be a house dog, we agreed to keep it small, to around 15 lbs. And last, since pet hair is an issue, we agreed that we would only get a short haired dog. Oh, and since money is very tight, we agreed that we would not spend more than $50.

With agreement in hand, I set off to find the perfect dog. I went to the obvious place to start a search for anything, Craig's List. After reading about 1,000 ads, I still hadn't found the dog that was right for us. Next I went to all of the local pet shelter websites, where I was shocked to discover that you can not adopt a dog for under $150, and a good dog could be $300 or more! This from the Oregon human society!

I was running out of both time and a positive outlook when a few days before Christmas I received a note from a local dog breeder, telling me about a new litter of puppies she had. She sent me a link to an online ad, and there some of the cutest puppies I've ever seen in my entire life! Little fuzzy balls of fluffy hair with bright eyes and a sparkle of intelligence, my heart melted for a second, before I realized that A.) these were long haired Australian shepherd puppies, and B.) there was no possible way they would be within my price range.

So I emailed the breeder back and told her I would love one of her puppies, but my budget was $50, so there was no way I could take one. A short while later she emailed me back, and we chatted a little about our families; she had two sons that had recently returned from Iraq, and a daughter who was into horses.

Around the same time I spoke with Randy, and told him about the amazing puppies. "NO!" he said. "They get big, they are hairy, and they are really active. Forget it." I told him OK, but now it was late the night before Christmas eve, and so we could forget about getting Jake a dog for Christmas.

The next morning I woke up and had an email from someone who saw my "dog wanted" ad, asking me if I was aware that there were several dog trainers in the local area who trained dogs to work with Autistic kids, as therapy dogs. I started looking into it and found one of them was located one town away. I got in touch with Randy and said, "Maybe we can alter our criteria some, since we can take the dog to one of these speciality trainers." Randy was luke warm to the idea of getting a puppy and letting it grow up and then sending it the trainers, so I let it go.

A few hours late, I heard back from the breeder that I had been chatting with, and she told me that she might be willing to take my $50, and trade me out of the rest of the balance due. Her daughter needed some horse tack and they would be interested in trading a puppy! I thanked her, but let her know that my husband really wanted a dog that would stay under 30 lbs, and at the average of 45 that Aussies attain, it just wouldn't work out.

I couldn't get the picture of that cute little pup out of my head though, and since time was running out, I did the only thing that was left to do, I prayed. "Please Lord, send us the right dog for us. " Within a few more hours I had a message from Randy - get the puppy.

I immediately contacted the breeder, and told her that we could take one after all! I was thrilled at the idea of giving Jake a puppy for Christmas, and I was amazed at how quickly it had all come together, when the breeder gave me another surprise - her husband would like to dress up like Santa and deliver the puppy Christmas morning!

Although I know that Jake can get overwhelmed in situations like these, I still didn't hesitate - I knew this could be a memory that he would cherish for a lifetime - so I said we would love it if Santa could come over. Then I headed out to the store to buy some small puppy treats - a few bones and a little collar, and I wrapped them up and stuck them under the tree with Jake's presents.

Christmas morning really was magical. Jake woke up in a very "on" mode, and after a call from the breeder to set up a time for Santa's arrival, we went about open presents. I really can't describe how the visit from Santa went, but you can see for yourself by watching the video!

As you can see, it really was a special time, and in two short weeks Skunk has become a really great member of the family.

I would like to thank the Bakers, who really went out of their way to come here Christmas morning and bring Skunk and Santa to Jake. They held off on opening their own gifts and starting their own Christmas to make sure Jake enjoyed his, even though we were complete strangers. Thanks Melody and fam!!