Monday, August 24, 2009

Where does the time go?

I can't believe that another summer is coming to an end. Jake is 7 1/2 now, and is getting ready to start 2nd grade!

Up until the end of the last school year, Jake has been in intervention classes, and classes for children with behaviour issues. There is a gap for kids like Jake in the education system; they don't fit into a "regular" classroom, and there aren't enough funds to tailor classrooms to all of the different needs of autistic kids, so they just kind of stick them where they think they can do the least damage. Of course no one stops to think about the damage to the kids; it's all about making sure that the kids are "manageable" and if they happen to learn something in the process then that is a big plus.

Jake is very, very intelligent, he just has a difficult time communicating what's in his brain to those around him. He also tends to act out what he sees, so if he is around kids with behaviour problems, he will tend to act like he is a problem, even though that is not really who he is. At the end of last year his teacher and I discussed the need to move him to a different type of classroom, so the last three week of the school year Jake spent half his day at Sandy grade school in the Behaviour classroom, and the other half at Nass elementary in the nearby town of Boring in an academic classroom for kids with Autism.

The changes in Jake were immediate; his verbal communication shot up and he was carrying on real, live, actual conversations on a regular basis. His math, reading and writing skills also improved (although he has consistently been above average in math) and he just seemed to be feeling more confident about himself. But, the process of switching schools, meeting new people, learning new rules and change in general was tough on him, and by the time school was over in June, he seemed to really, really need a vacation.

After seeing the huge change in Jake from three weeks of half days in a specialized classroom, I can only wonder how far along he'd be if he would have had a tailored education from day one. a public eduction is the right of very citizen in the US; but the state of public education in this country is pretty sad. Services for mainstream children in schools across the country have been sliced to the bone over the years, and if you have a special needs child, you can be almost certain that their education will be lacking in a major way. Maybe instead of spending trillions of dollars overhauling an a healthcare system that currently works for 87% of US citizens, the government should be focusing on overhauling the education system, which seems to be failing 100% of our children. It's just a thought.

Tuesday, November 18, 2008

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.

Tuesday, November 4, 2008

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!

Friday, April 18, 2008

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.

Sunday, January 6, 2008

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!!