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.
Monday, August 24, 2009
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.
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)
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 indo
or 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!
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 indo
or 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!!
Saturday, January 5, 2008
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!!
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!!
Sunday, December 16, 2007
A Picture is Worth A Thousand Words
Jake started Kindergarten this year, and one of the bonus "fun stuff" items for me was waiting for "picture day" so I could put the very first "school portrait" in his education scrapbook. The day of pictures Jake and I picked out the perfect outfit, combed his hair, polished his glasses, and off he went. I know it seems silly, but this picture was a really big deal for me, because it would be the foundation picture in his school scrap book - the first picture of him turning into a big boy, and the last will be his high school graduation.
About a week before Randy came home on leave, I got the pictures back. My mom actually saw them first and called me into the room. "Jake's pictures came back today," she said. Her lack of enthusiasm was my first clue.
I pulled pictures out of the envelope and stared at them for a few seconds. "Uh oh," I said.""What do you think happened there?" my mom asked.
"Ummm...I don't know, but HEY! We can do a retake!" I replied.
I sent the pictures back with the "unaceptable" and "take retake" boxes checked, and figured that all would be fine. Except it wasn't fine - because Jake was home with pneumonia on the day of the retakes, and we weren't able to get them re-shot.
I really wanted to put photos in with Christmas cards, so I knew I was going to have to do something. Since money was tight, I decided to take him to one of the discount stores that has an in-house photo studio. When I went sign him up for pictures, I told the lady taking apointments that we would need extra time, and that it was very important that not have to wait long upon arrival, so could we please get an appointment earlier in the day. She ended up scheduling us as the first appointment after lunch, which should have meant no wait, so I said OK.
We spend a lot of time at this particular store shopping, and so it's a place that Jake is both familiar and comfortable with, but even so, he only has about 1o minutes of "wait time" in him before he starts getting very restless, which leads to agitation.
When we arrived for our appointment, we were the only people in the waiting area, but both of the studios had people in them. Fifteen minutes go by and we're still waiting to just GET IN A STUDIO, and Jake's still hanging in there. He was really excited about having his picture taken, and we spent the time talking about how great it was going to be to get to go in the studio and see the big camera.
After we had been waiting for about 20 minutes, I went up to the counter and said the gal who was working, “Look, when I signed up I told them that Jake has special needs and that we needed to get in within 10 minutes and they assured me that we would.”
She snapped back at me, "Just a minute!"
About this time 2 moms and their two boys, probably 11 and 12 years old, come and crowd in the very small waiting area, followed by a man and his son, who was probably about 8. They stood right in front of the only opening, in effect trapping Jake in a very small, confined space that now has a lot of noise and activity. At this point Jake rapidly starting losing what grip on reality he had. He stood up and started batting at imaginary things in the air as the moms stared, the kids stared, the dad stared.
The dad with the little boy did not come across as a nice person. When his son went to sit down, he grabbed him by the arm HARD and said "I told you NOT TO MOVE,” which of course Jake responded to by mirroring him, "I TOLD YOU NO MOVE!" Jake shouted at the guy from the across the room, giving him is best dirty look. The man shot a dirty look back, and at that point I was about ready to come out of my chair.
The two boys that were siting next to us start talking to each other and Jake walked over and said, “Hi Boys!” He said it with a smile and was very friendly, and the boys looked at him like he had worms crawling out his ears. “My name is Jake! I'm Jake!” He said, again with enthusiasm, and again they just stared at him. In Jake's world, that must mean they didn't hear him, so he stepped closer. The one boy actually leans back in his chair like "get away from me" and the other boy goes' YOU ARE Weird! The moms did nothing, just stood there and stared.
Jake looked at me like he knew something bad just happened, but he wasn't sure what. At that moment, when my heart was about to break, one of the studios emptied out, so I took Jake in there to get him away from the crowd.
We waited in there for another ten minutes…so he has now waited for over half an hour, which is really an outstanding amount of time for him to basically just stand around and wait. Finally the "photographer" came in, and I explained to her that Jake has Autism, which means it will take a little longer to do his pictures, and that I had arranged for extra time when I signed up. She assured me that was fine and that she had a friend who has an Autistic child, so she knew all about autism.
I wish I had a quarter for every time someone said to me, "Oh, my niece/neighbor/friend/boss's sister/third cousin on my step mom's side has a child with Autism, so I understand!" At the same time I was taking my quarter, I would turn around and bet it double or nothing that the person claiming to "understand" is actually completely clueless. I would then take my one million dollars and open up the most amazing therapy center you could possibly imagine. But I digress.
Jake had to climb up on a table covered with a soft rug and balan
ce at a weird angle for the "photographer" to get the shot she wanted. I explained to her that he has difficulty with balance, and that the longer you try to get him to hold still in one spot, the less likely it is that it's going to happen. (I'm quite sure that's why we got the "what is THAT" pictures from school). Finally she gets him right where she wants him and she says "SMILE" and Jake gives his very best giant, fake, over-the-top Cheshire cat grin.
I told her that wasn't going to do, and she started barking orders at him, "Turn RIGHT!" "Turn you head RIGHT!" "He doesn't understand that, " I said. And before the words were completely out of my mouth, she had darted across the room and grabbed his head to try and turn it the way she wanted. It never occurred to me say, "by the way, many autistic people do not like/want to be touched by people they love, much less strangers, so what ever you do, don't touch my son." Because, yanno, she told me SHE KNEW ALL ABOUT AUTISM.
Of course the unwanted touching and the barking of orders confused and annoyed Jake, so he immediately started to become agitated. Once he is agitated, you can pretty much forget getting him to sit still much less smile and take a pretty picture, but she did manage to snap three more fake smile shots.
At this point she tells me that she'd like to try a different style of picture that would be easier for him. She pulls down a black background, we get him to turn sideways, and she tells him to look up at the sky, to where there is a little teddy bear hanging from the ceiling. Jake looks at the bear and starts to smile, and SHWAMP!, the flash goes off on the camera, right in his eyes. Jake threw his hands up to his face like we do when the sun is in our eyes, and he slowly peaked out from behind his hands, all the time blinking wildly and now physically shaking. He dropped his hands for just a second and SHWAMP! she took another picture. "ENOUGH!" I shouted. He can't take THAT! (In my head, this was followed by, "what are you, fucking CRAZY??"
Jake started crying and he was shaking and I went and picked him up. "No more light," he whimpered in my neck. "No more." "No more," I told him, "it's all over now. We're all done."
"Well I guess that should do it!" the girl said. I looked at her like SHE had worms crawling out her ears. "Follow me and we'll look at his proofs!" The three that she took with the Christmas background were part of the $9.99 portrait special that I had signed up for. I wanted these for my Christmas cards, to send to all of the friends and family who haven't had a picture of Jake since he was born. There were only three choices, and he looked like a goof in every one. "I don't like any of these," I said, "but I guess the first one will do." So
she says to me, "well usually I take 8 or 9 on that background, but since he was such trouble I just did the three.
You will be proud to know that I help my composure, and lucky for everyone in the studio that day, the first of the traumatic flash pictures was actually quite lovely. Of course those were NOT on special, so I had to pay full package price, which was $50.00.
Next time I know that I need to immediately lay ground rules for the picture takers. Through out this story you will notice that I refer to the gal who took the pictures as the "photographer." That is because while that is the title the studio gives her, she is NOT a professional photographer. My photographer friend, Cyndie Planck, would have gotten beautiful, joyous pictures of Jake without any trauma to him at all. I wish I could afford to use her all of the time, but I have to make choices while I'm dedicating our resources to getting Jake's Place up and running.
I also know that when people say, "I know all about Autism" I need to act like I didn't hear a word they said. I need to be proactive and educate every single place I go with Jake, because he can't advocate for himself and most people don't know nearly as much as they think they do.
If you have a story about getting your child's picture taken, please share it with me, I really care about what you're going through, too.
We spend a lot of time at this particular store shopping, and so it's a place that Jake is both familiar and comfortable with, but even so, he only has about 1o minutes of "wait time" in him before he starts getting very restless, which leads to agitation.
When we arrived for our appointment, we were the only people in the waiting area, but both of the studios had people in them. Fifteen minutes go by and we're still waiting to just GET IN A STUDIO, and Jake's still hanging in there. He was really excited about having his picture taken, and we spent the time talking about how great it was going to be to get to go in the studio and see the big camera.
After we had been waiting for about 20 minutes, I went up to the counter and said the gal who was working, “Look, when I signed up I told them that Jake has special needs and that we needed to get in within 10 minutes and they assured me that we would.”
She snapped back at me, "Just a minute!"
About this time 2 moms and their two boys, probably 11 and 12 years old, come and crowd in the very small waiting area, followed by a man and his son, who was probably about 8. They stood right in front of the only opening, in effect trapping Jake in a very small, confined space that now has a lot of noise and activity. At this point Jake rapidly starting losing what grip on reality he had. He stood up and started batting at imaginary things in the air as the moms stared, the kids stared, the dad stared.
The dad with the little boy did not come across as a nice person. When his son went to sit down, he grabbed him by the arm HARD and said "I told you NOT TO MOVE,” which of course Jake responded to by mirroring him, "I TOLD YOU NO MOVE!" Jake shouted at the guy from the across the room, giving him is best dirty look. The man shot a dirty look back, and at that point I was about ready to come out of my chair.
The two boys that were siting next to us start talking to each other and Jake walked over and said, “Hi Boys!” He said it with a smile and was very friendly, and the boys looked at him like he had worms crawling out his ears. “My name is Jake! I'm Jake!” He said, again with enthusiasm, and again they just stared at him. In Jake's world, that must mean they didn't hear him, so he stepped closer. The one boy actually leans back in his chair like "get away from me" and the other boy goes' YOU ARE Weird! The moms did nothing, just stood there and stared.
Jake looked at me like he knew something bad just happened, but he wasn't sure what. At that moment, when my heart was about to break, one of the studios emptied out, so I took Jake in there to get him away from the crowd.
We waited in there for another ten minutes…so he has now waited for over half an hour, which is really an outstanding amount of time for him to basically just stand around and wait. Finally the "photographer" came in, and I explained to her that Jake has Autism, which means it will take a little longer to do his pictures, and that I had arranged for extra time when I signed up. She assured me that was fine and that she had a friend who has an Autistic child, so she knew all about autism.
I wish I had a quarter for every time someone said to me, "Oh, my niece/neighbor/friend/boss's sister/third cousin on my step mom's side has a child with Autism, so I understand!" At the same time I was taking my quarter, I would turn around and bet it double or nothing that the person claiming to "understand" is actually completely clueless. I would then take my one million dollars and open up the most amazing therapy center you could possibly imagine. But I digress.
Jake had to climb up on a table covered with a soft rug and balan
ce at a weird angle for the "photographer" to get the shot she wanted. I explained to her that he has difficulty with balance, and that the longer you try to get him to hold still in one spot, the less likely it is that it's going to happen. (I'm quite sure that's why we got the "what is THAT" pictures from school). Finally she gets him right where she wants him and she says "SMILE" and Jake gives his very best giant, fake, over-the-top Cheshire cat grin.I told her that wasn't going to do, and she started barking orders at him, "Turn RIGHT!" "Turn you head RIGHT!" "He doesn't understand that, " I said. And before the words were completely out of my mouth, she had darted across the room and grabbed his head to try and turn it the way she wanted. It never occurred to me say, "by the way, many autistic people do not like/want to be touched by people they love, much less strangers, so what ever you do, don't touch my son." Because, yanno, she told me SHE KNEW ALL ABOUT AUTISM.
Of course the unwanted touching and the barking of orders confused and annoyed Jake, so he immediately started to become agitated. Once he is agitated, you can pretty much forget getting him to sit still much less smile and take a pretty picture, but she did manage to snap three more fake smile shots.
At this point she tells me that she'd like to try a different style of picture that would be easier for him. She pulls down a black background, we get him to turn sideways, and she tells him to look up at the sky, to where there is a little teddy bear hanging from the ceiling. Jake looks at the bear and starts to smile, and SHWAMP!, the flash goes off on the camera, right in his eyes. Jake threw his hands up to his face like we do when the sun is in our eyes, and he slowly peaked out from behind his hands, all the time blinking wildly and now physically shaking. He dropped his hands for just a second and SHWAMP! she took another picture. "ENOUGH!" I shouted. He can't take THAT! (In my head, this was followed by, "what are you, fucking CRAZY??"
Jake started crying and he was shaking and I went and picked him up. "No more light," he whimpered in my neck. "No more." "No more," I told him, "it's all over now. We're all done."
"Well I guess that should do it!" the girl said. I looked at her like SHE had worms crawling out her ears. "Follow me and we'll look at his proofs!" The three that she took with the Christmas background were part of the $9.99 portrait special that I had signed up for. I wanted these for my Christmas cards, to send to all of the friends and family who haven't had a picture of Jake since he was born. There were only three choices, and he looked like a goof in every one. "I don't like any of these," I said, "but I guess the first one will do." So
she says to me, "well usually I take 8 or 9 on that background, but since he was such trouble I just did the three.You will be proud to know that I help my composure, and lucky for everyone in the studio that day, the first of the traumatic flash pictures was actually quite lovely. Of course those were NOT on special, so I had to pay full package price, which was $50.00.
Next time I know that I need to immediately lay ground rules for the picture takers. Through out this story you will notice that I refer to the gal who took the pictures as the "photographer." That is because while that is the title the studio gives her, she is NOT a professional photographer. My photographer friend, Cyndie Planck, would have gotten beautiful, joyous pictures of Jake without any trauma to him at all. I wish I could afford to use her all of the time, but I have to make choices while I'm dedicating our resources to getting Jake's Place up and running.
I also know that when people say, "I know all about Autism" I need to act like I didn't hear a word they said. I need to be proactive and educate every single place I go with Jake, because he can't advocate for himself and most people don't know nearly as much as they think they do.
If you have a story about getting your child's picture taken, please share it with me, I really care about what you're going through, too.
Calling all Moms!
If you are the mother of a child with Autism, I want to hear from you!
I'm looking for your day-t0-day stories on how you and your family are handling your daily struggles and triumphs with Autism for my upcoming book with co-author Jennifer Walker.
Jenn and I are putting together a series of questions that will be sent to our email list of selected moms, who will then answer the questions and send them back to us for consideration for inclusion in the book. Writing skills are not necessary, just the ability to answer specific questions in a fairly timely manner. A sample question would be: "What were the first 48 hours after your child was diagnosed with Autism like for you?"
If you are interested in taking part in our Q & A email sessions, please email me and I will send you detailed information.
I'm looking for your day-t0-day stories on how you and your family are handling your daily struggles and triumphs with Autism for my upcoming book with co-author Jennifer Walker.
Jenn and I are putting together a series of questions that will be sent to our email list of selected moms, who will then answer the questions and send them back to us for consideration for inclusion in the book. Writing skills are not necessary, just the ability to answer specific questions in a fairly timely manner. A sample question would be: "What were the first 48 hours after your child was diagnosed with Autism like for you?"
If you are interested in taking part in our Q & A email sessions, please email me and I will send you detailed information.
Thursday, November 29, 2007
It's the Small Things
I spend a lot of time with Jake inside our little castle. Most of our interaction in the outside wold consists of trips to the store, restaurants and movies. Even in those situations, Jake's interaction with the world is pretty limited and focused. He might say hi to the checkout person, or talk to the waiter, or yell hello at the folks passing by, but for the most part, most of his focus is on me and mine on him.
I like my view of Jake in the world, and usually I don't think much of it. Then some little thing will happen and I will realize how very, very different Jake's life is from that of a mainstream 6 year old, and I get a little anxious, and a little frightened, and I start worrying a whole lot about the future, and how I can make sure that Jake is always going to be OK.
Our grocery store has a small daycare center. It's got a TV and some chairs and some little tables, and it's staffed by an assortment of folks. Jake went in to play one time about a year ago - he was the only child there and sat in the corner and played with blocks. I didn't want to put him in there - I like to keep him close to me, keep him protected and safe - but he wanted to try it, and I know how important it is for me to let him spread his wings.
He did fine that day last year, but never really asked to go in there again, until day before yesterday. He was having an "off" day. He woke up sensory seeking and introverted and a little crabby. He would sink into himself and bursting to tears for no reason, except for one time when he said he missed his daddy. I needed to run to the market and I know how Jake loves to get out of the house (sometimes I think it's probably more of a prison to him, never getting to just take off into the yard or ride a big wheel down the street), so I thought a trip to the store would cheer him up.
When we got to the parking lot I realized that the trip could go either way; it could either take his mind off of whatever was bothering him and cheer him up, or the large crowds, noise, bright lights and stimulation could send him right over the edge into a full blown autistic break down. Once we worked our way to the side walk Jake took off, and I knew for sure that he was feeling the need for some exercise. When I caught up to him I took his hand and walked through the door, and realized the pre-Christmas crowds were even worse then I'd expected. I'd need to keep him right next to me to make sure that I wouldn't lose him in the crowd.
We started going up and down the aisles, just walking and looking at all of the Christmas displays, when Jake asked to go see the movies. To get there, we had to walk by the day care room, and to my surprise, Jake stopped and asked to go inside. I hesitated for a moment. I knew that he really did want to go, but I also knew that he was having an "autistic" day - a day where his behavior would be unpredictable, disorganized, and at times agitated. When I looked in the room, I saw a little girl playing with crayons, and little boy watching TV. The lady who was in charge was an elderly woman, probably close to 70. "Please, mama. Pleeeaaazzzeeee...," Jake asked, over and over. And I wanted to say yes, but I have seen Jake on too many of these days. I knew the girl's crayons would end up on the floor, the little boy would end up knocked off his chair, and the "grandma" would be frantically calling me over the intercom to come and get him.
I looked at Jake and once again my heart was breaking. "Not today, Little Man," I said.
"But I want to play," he sad softly, looking at the floor.
I got down on my knees and lifted his chin up so he would be forced to look me in the eye. "I know you do Jake, but you know what? Momma needs help picking out your special crackers. Can you help me with that right now and play another time?" I asked.
"Ok," he replied as he climbed up on the cart between me and the handle, pressed between the front of the cart and my body. "I will help mama," he said softly.
No, Jake is not like other 6 year olds. He's so much more - more than I could have ever asked for, and every night I pray to the Lord, asking that he help me do what's best for Jake. Some days I'm confident I'm getting it right, and other days - well other days, I just don't know.
Our grocery store has a small daycare center. It's got a TV and some chairs and some little tables, and it's staffed by an assortment of folks. Jake went in to play one time about a year ago - he was the only child there and sat in the corner and played with blocks. I didn't want to put him in there - I like to keep him close to me, keep him protected and safe - but he wanted to try it, and I know how important it is for me to let him spread his wings.
He did fine that day last year, but never really asked to go in there again, until day before yesterday. He was having an "off" day. He woke up sensory seeking and introverted and a little crabby. He would sink into himself and bursting to tears for no reason, except for one time when he said he missed his daddy. I needed to run to the market and I know how Jake loves to get out of the house (sometimes I think it's probably more of a prison to him, never getting to just take off into the yard or ride a big wheel down the street), so I thought a trip to the store would cheer him up.
When we got to the parking lot I realized that the trip could go either way; it could either take his mind off of whatever was bothering him and cheer him up, or the large crowds, noise, bright lights and stimulation could send him right over the edge into a full blown autistic break down. Once we worked our way to the side walk Jake took off, and I knew for sure that he was feeling the need for some exercise. When I caught up to him I took his hand and walked through the door, and realized the pre-Christmas crowds were even worse then I'd expected. I'd need to keep him right next to me to make sure that I wouldn't lose him in the crowd.
We started going up and down the aisles, just walking and looking at all of the Christmas displays, when Jake asked to go see the movies. To get there, we had to walk by the day care room, and to my surprise, Jake stopped and asked to go inside. I hesitated for a moment. I knew that he really did want to go, but I also knew that he was having an "autistic" day - a day where his behavior would be unpredictable, disorganized, and at times agitated. When I looked in the room, I saw a little girl playing with crayons, and little boy watching TV. The lady who was in charge was an elderly woman, probably close to 70. "Please, mama. Pleeeaaazzzeeee...," Jake asked, over and over. And I wanted to say yes, but I have seen Jake on too many of these days. I knew the girl's crayons would end up on the floor, the little boy would end up knocked off his chair, and the "grandma" would be frantically calling me over the intercom to come and get him.
I looked at Jake and once again my heart was breaking. "Not today, Little Man," I said.
"But I want to play," he sad softly, looking at the floor.
I got down on my knees and lifted his chin up so he would be forced to look me in the eye. "I know you do Jake, but you know what? Momma needs help picking out your special crackers. Can you help me with that right now and play another time?" I asked.
"Ok," he replied as he climbed up on the cart between me and the handle, pressed between the front of the cart and my body. "I will help mama," he said softly.
No, Jake is not like other 6 year olds. He's so much more - more than I could have ever asked for, and every night I pray to the Lord, asking that he help me do what's best for Jake. Some days I'm confident I'm getting it right, and other days - well other days, I just don't know.
Tuesday, November 27, 2007
A Special Thank You
I need to apologize to all of you for my lack of posts this past month; it has been a busy month full of chaos and change. I have quite a few stories to share and will try and start getting them caught back up later this week, but for now I wanted to share the news that we had our first $100 donation this week!!
Of course I wrote to our donor and thanked her personally, but I also wanted to share here what a huge boost it was to go to the mail box and see that Paypal receipt. Fundraising is never an easy task, but it is a real challenge when you're trying to do it alone. So to all of our donors, THANK YOU for your generosity, support, and most of all, your faith in our mission. You will never know how deeply thankful I am for folks like you. I couldn't do this without you!
Of course I wrote to our donor and thanked her personally, but I also wanted to share here what a huge boost it was to go to the mail box and see that Paypal receipt. Fundraising is never an easy task, but it is a real challenge when you're trying to do it alone. So to all of our donors, THANK YOU for your generosity, support, and most of all, your faith in our mission. You will never know how deeply thankful I am for folks like you. I couldn't do this without you!
Sunday, November 11, 2007
Halloween Tales
The last half of the year is by far Jake's favorite. Halloween and Christmas are his two favorite holidays, and he talks about them all year long. Since many people with Autism don't have a concept of time, it can be a challenge to explain to Jake in February why we can't put up Halloween decorations.
Two days before Halloween Randy had a talk with Jake and told him that he might be too sick to go trick-or-treating, and if he didn't get well in the next day they wouldn't be able to go. Jake looked at Randy and said, "I will be OK. Yes trick-or-treat!" And by Halloween night, he had pulled him self together enough that we decided to take him out. He got dressed up in his Home Depot Race Car Driver costume, grabbed his Sponge Bob bucket, and we headed out the door.
I think one of the reasons that Halloween is so important to Jake is because it's always been the holiday that he shares with his daddy. It their special day, and they carve pumpkins and get costumes on and then go out to trick-0r-treat.
To help Jake understand days and months and the passing of time, I have two special calendars up on the bulletin board at all times. One is of the current month, and the other is of the month to come. Each day that something is happening has an appropriate symbol, like a school bus for school days and a birthday cake for birthdays and last month, a jack-0-lantern for Halloween, and at the end of each day, before Jake goes to bed, we cross off the day so he can visually see that time has passed.
Around the middle of September, Jake started to get very upset when he would look at the calendars. After a few days I asked him what was wrong and he said, "Daddy home for Halloween? Daddy pumkins?" Randy's deployment has been hard on all of us, so when I talked to Randy I told him what a rough time Jake was having and how he wanted daddy home for "their" holiday. A few days later Randy called me back and told me that he had gotten leave and would be home for Halloween.
When I told Jake he lit up like the jack-0-lanterns he loves so much. "Daddy home for trick-or-treat? Daddy home for pumkins," he asked over and over. When he would talk to Randy on the phone, every conversation ended with "Daddy and Jake trick-or-treat? Daddy and Jake Big Music Show (the movie theater) and Olive Garden (Jake's favorite restaurant)?" And Randy 
always replied, "Yes Jakey, when I come home we'll go to the big music show, the olive garden and trick-or-treating."
always replied, "Yes Jakey, when I come home we'll go to the big music show, the olive garden and trick-or-treating."Randy got here a week before Halloween. A few days after he got home, Jake came down with the worst cold he's ever had in his life. He was in bed for three days, and as Halloween approached it looked like there would be no trick-or-treating after all. Three days before the big night, Jake asked us if we were going to carve the pumpkins. He was too sick to participate, but he did pick out the designs that he wanted and Randy and I carved them. I carved four this year, and Randy carved one - but oh boy, was his one something else! A flaming horse head of incredible detail brought squeals of delight from Jake - and all the kids who came to the door on Halloween!
Two days before Halloween Randy had a talk with Jake and told him that he might be too sick to go trick-or-treating, and if he didn't get well in the next day they wouldn't be able to go. Jake looked at Randy and said, "I will be OK. Yes trick-or-treat!" And by Halloween night, he had pulled him self together enough that we decided to take him out. He got dressed up in his Home Depot Race Car Driver costume, grabbed his Sponge Bob bucket, and we headed out the door. Trick-or-treat is very different to Jake then it is for the other kids. Where other kids are running around screaming and yelling and laughing and desperately trying to get the largest amount of candy they can in the shortest amount of time, Jake approaches it quietly and with a sense of wonder. With a few exceptions he doesn't eat candy, and the biggest thrill for him is looking into people's houses when they open the door. This year he only tried to walk into one person's house so we thought he was doing pretty good!
Usually Jake would trick-or-treat all night if we would let him. He loves "talking to the people" and looking in peoples' homes, and ringing their door bells. This year we made it around a block and a half and he looked at us and said "All done. Go home now." The cold had gotten the better of him and he had made it as far as he could. Randy looked at me and said, "He told me he'd be OK. He told me we were going to trick-or-treat, and we did." Yes he did - and Jake is a man of his word. Happy Halloween!
Monday, October 22, 2007
Kellogg's Loves Kids!
Last week I told you all the story about Jake's trip to the grocery store where he just had to have some Apple Jacks for the cool Xbox game inside. Well, I sent a copy of that post to the folks at Kellogg's because thought they might get a kick out of it. It looks like they did, because a few days ago I received the following reply:
Mrs. Sandland,
Thank you for sharing the tale of Jake's visit to the grocery store with us! It really brightened every one's day!
Our employees spend a lot of time coming up with ideas for new promotional items and we were very happy to hear that Jake was able to enjoy one of them. Since Jake had fun playing the game he got in the box of Apple Jacks®, we hope he would like to try some others. We are sending some games to you under separate cover and ask that you allow two to three weeks for delivery.
Once again, thank you for sharing your wonderful story with us. We hope Jake enjoys the mini games as much as the first one he received.
Sincerely,
Pablo A. Martinez
Consumer Affairs Department
I thought it was so neat of them to not only respond to Jake's story, but to send him extra toys, that I really wanted to get the word out that this particular big company takes the time for the little guys. Support Kellogg's, by some cereal today! :-)
ETA: Kelloggs came through! Jake recieved a second game from them last week, and he's really enjoying it. Thanks Kellogg's!
Mrs. Sandland,
Thank you for sharing the tale of Jake's visit to the grocery store with us! It really brightened every one's day!
Our employees spend a lot of time coming up with ideas for new promotional items and we were very happy to hear that Jake was able to enjoy one of them. Since Jake had fun playing the game he got in the box of Apple Jacks®, we hope he would like to try some others. We are sending some games to you under separate cover and ask that you allow two to three weeks for delivery.
Once again, thank you for sharing your wonderful story with us. We hope Jake enjoys the mini games as much as the first one he received.
Sincerely,
Pablo A. Martinez
Consumer Affairs Department
I thought it was so neat of them to not only respond to Jake's story, but to send him extra toys, that I really wanted to get the word out that this particular big company takes the time for the little guys. Support Kellogg's, by some cereal today! :-)
ETA: Kelloggs came through! Jake recieved a second game from them last week, and he's really enjoying it. Thanks Kellogg's!
Thursday, October 18, 2007
Putting it all in Perspective
I wrote this about 2 1/2 years ago, after Jake was diagnosed with Autism. Since I started Jake's Place, I've had so many people, even some family and friends question me about why I'm doing this and why is it so important that the parents are a primary focus as well as the kids. I'm hoping that by sharing this journal entry, it will help people understand why there IS a need for Jake's Place, and why it's so very important to me that we succeed in our goals.
________________________________________
Jake is 3 1/2. He talks mostly in nouns, and doesn't understand his own name. Yet he is a whiz at math and music; trying to play songs on his toy instruments, and already doing simple addition. He watches the same movies over and over, and mumbles key phrases under his breath.He's a beautiful boy; very charismatic. People are automatically drawn to him. This poses a bit of a problem as he really only likes to interact on his own terms. My parents live across the country and just left after a week long visit. He takes very well to my dad, but he's leery of my mom. It was so hard watching her, she wanted to just be "grandma" but she's very respectful and keeps some distance. Finally he came up to her right before they left and he said his only "I" word, "I love you, nana." It was so sweet.
Jake loves to walk, he always has. He would rather be outside then anywhere. This poses some problems, because we live in town, and he has no fear/concept of "danger." He is fascinated by water, obsessed with it, really, and will do anything to get near it, including walking off a cliff or crossing a highway without looking. When he was about two and a half, he got out of the house, and walked right down the middle of the very busy street next to our home. A lady was coming home from work and hit her brakes and grabbed him, and called the police. I was frantically searching for him, and he was two blocks away. I like to take him to the forest and the river because he really seems to come alive there, but I have to be so vigilant. We live in the Cascade mountains, and it's very rugged and wild and filled with danger, and my little Jake is completely oblivious to it. He just knows he likes trees and moss and water.
When he was 18 months, he was just starting to walk, and not talking at all. He was a "good" baby; he never cried or fussed. He liked to watch TV and line things up. My husband is a bit OCD, so we would talk about how cute it was that Jake had to "organize" all of his toys at such a young age. We gave him the nick name "Bruticus" because he was tough like Sparticus and rough like a Brute. He would fall HARD and not cry. He loved to be tackled and hugged tight and tossed around. When you tried to play catch with him, he liked to be hit with the ball. We thought he was "all boy." Around this same time, he started to become a picky eater.Eventually he would only eat plain McDonald's cheeseburgers, grilled cheese and just about any type of meat. No fruit. No vegetables. No juice, ever. No cake, no ice cream. Now he's expanded to bananas, rice and hot dogs on a bun. He gets Easter and Christmas and Halloween candy, and he dumps it out and sorts it by shapes and colors, and lines it all up, but never eats it. Hi likes cake, he likes to play in the frosting - just don't ask him to put it in his mouth! Of course this poses a problem because there is no way he's getting proper nutrition. He's big and looks healthy, but you can't really BE healthy without fruit and vegetables. He won't eat vitamins, and if you try and force him to eat anything, he throws up.
My husband is in the service, and when Jake was 26 months, he was called away on active duty. He was gone for four months. Jake was still not talking, but the pediatrician told us there was nothing to worry about, that boys just talk later then girls. A speech therapist told us that he was tongue tied, so we had that fixed. I had made up my mind that by the time Randy got home, Jake would be talking. He would never ask for things, he would just point and grunt or lead me by the hand. Everyone told me that he was just being lazy, that he wouldn't talk because I did everything for him. So I started forcing the issue. I would not put in his movie unless he said "movie." He would sob and shake and become hysterical, and I listed to every one who told me he was getting spoiled and was throwing tantrums. By the time Randy got home, he was saying about six words. For the next six months, he hardly spoke, occasionally saying one of the six words. He would get very upset when we would leave the house. Randy thought it was because he was affected by their separation, and that as soon as he knew daddy wasn't leaving again, he'd be fine. Now he says quite a few words, but basically only nouns. He can't say "I'd like some water" but he'll say "green cup" or "water." If you ask him what he did today, he'll say "shower shower, sandbox, green truck, water" which means, I took a shower, I played in the sandbox, I rode in the green truck, and I played in the water." His only "I" word is when he says "I love you," a phrase that he's heard ten thousand times.
For over a year I've been trying to teach him to say his name. What's your name? My name is Jake. It's so simple. But for him, it's so foreign. I am "the mommy" and any woman is "the mommy." My husband is the daddy, grandma and grampa are "the" and any child is "baby" or "McKenna" because that's his little cousin's name. Last week we had a huge break through. I asked him to leave his toy in the car when we went into the grocery store. As I took it away from him he said, "No, that's MINE." So here I am standing in the grocery store parking lot, crying like a fool, because my 31/2 year old said "mine".
Taking him anywhere is a challenge, because he can't be still. If he's "strapped in" his car seat or a shopping cart, he's ok. But if I have to take him some place where we need to walk, it's a hard job. He's big for his age, 42 lbs, and I can't carry him every where. If I set him down, he's off and running...touching everything, bumping into people, not watching where he's going. People have started to give me the "you lousy parent your kid is a brat" look. Sometimes I wonder if I should embroider "Autistic" on his clothes. Maybe in a nice scarlet red?
His sleep patterns are all messed up. My husband is full time Air National Guard, and is working horrific hours. I run my own business from home. I don't have daycare. On the best night, he'll get to sleep by 9 pm, and sleep in until 7, maybe only waking up to cry once in the night. On a typical night, he gets to sleep around midnight, and is up by 6:30. Sometimes he naps, and often it will be for a long time - three to four hours. I hate those days, because if I wake him up, he's inconsolable, but if I let him sleep, I know he's going to be up all night long. We need the income from my business to survive. I work when I can, and any time my husband has off, I'm working.
Since the diagnosis, I've been spending two to four hours a week on the phone with Dr's, Therapists, and Insurance. Our insurance card says "the worlds best insurance for the world's best military." I've got to tell you folks, if that's the truth, we should all be very scared. I'm tired all the time. We don't have any family close by, so not much support. My parents are retiring next year and will move here then. I hope it goes fast.
For the most part Jake's a very happy person. Even when he goes off into his own world, he's very calm and peaceful and quiet. He's very loving with his father and I. Lots of hugs and kisses. Lately he's become extremely attached to me. Anytime he gets stressed he's climbing into my lap. Is it bad for me to like those moments? I love it when he's still and warm and soft in my arms.
About six months ago he started reacting to certain noises by covering his ears, rocking back and forth, and humming. If you try and stop him, he becomes hysterical. I can't figure out what sets him off, he does it at such a variety of things. Just the past few weeks he's started banging his head on things. I'm scared of that, and wish the fucking insurance bastards would get their shit together so he could get into therapy.
Friends and family have asked us if he has a hearing problem, because when you call his name he usually won't respond. I'm so tired of trying to educate them, but I know I'm just at the very beginning. Sometimes I want to write out little cards to hand out. "No, he does not have a hearing problem. No, he's not just a "picky" eater. No, he's not spoiled. No, he's not being bratty." But then I go back to the idea of that scarlet A, and it makes me sad.
For the first time, yesterday my husband and I told strangers that he's autistic. We were shopping for a car, and the sales people kept trying to look Jake in the eye and ask him questions, and he would just turn away. He just wanted to look at rocks and flowers. After numerous attempts to engage him and hints that he sure doesn't talk much for someone his age, we finally just said, "He's autistic." The first saleswoman pretended she didn't hear. When we had to explain it again later that day to another salesman, he said "My manager has an autistic son, so I understand."
Watching how people react is both sad and amusing. I don't want him to be labeled and branded. He's so bright and beautiful and incredible, and just because he doesn't fit into societies definitions of "normal" he's going to be branded. Why does it have to be like that? My little Jake. I have never met such an incredible person in my entire life. I know that despite the challenges to come, he's going to stay the incredible human being that he is right now. I'm so thankful that I have him, and that he's not dying or maimed or disabled in some terrible way.But at the same time it breaks my heart that I can't have a conversation with him. I'll see moms and dads in public telling their kids to be quiet, and I want to grab them and scream "DON'T YOU UNDERSTAND HOW LUCKY YOU ARE?? Your child is talking to you! She's telling you about school and her life and the stars above! Drink it in! Savor it! Thank God!!" And instead I just hug Jakey tight, and try my best to understand what he's saying when he talks "Jakespeak."
He often speaks in colors. It took me a while to figure out that "RED RED" meant he hurt himself badly, and "orange" meant he hurt himself just a bit. Sometimes he talks about purple and pink and blue, and I will frantically search around for the object that matches the color...and then I realize there is no object, except maybe in Jake's mind. We've had three good days in a row now. He's been "here" about 70% of the time. He adapted well to my parents visit. He has been energetic and outgoing and "on." When he has days like this, I know I should be working on some thing like potty training or recognizing his name. But I don't want to bring on the stress and anxiety and head banging and ear holding and rocking and sorrow. So I just let him be who he is right now. My little Jake.
_______________________________________
Jake will be 6 December 1. He now has a very broad vocabulary and talks most of the time, but only about 50% of it makes sense. You still cannot have a conversation with him; the only questions he will answer are ones that pertain to his needs. "Are you hungry?" Yes. "What do you want to eat?" Corndog. Ask a question like "what are you thinking about" or "what did you do at school today" and he just turns away and walks off. About 50% of his conversation is from movies or cartoons. He constantly repeats Sponge Bob and Fairly Odd Parents lines over and over and over.
About a year ago he went through a very difficult sensory input phase, where he literally could not be left alone for a minute. He would violently slam doors into the walls leaving big holes, dump out the contents of the fridge on the carpet, scribble in the walls, throw down the kitchen chairs - our house looked like - well I don't know what. He was constantly trying to escape outside, including trying to climb out of his 2nd story bedroom window. We had the windows and doors nailed and locked shut, with these giant special locks and in some cases boards. We would never let people in the house. EVER. And we were so exhausted chasing after him every single minute. Eventually we found a therapy that helped, and it took us nearly 6 months to repair all of the damage to the house. For obvious reasons during this time we never went anywhere aside from the grocery store with him.
I would have given anything to have a place like Jake's Place. Many children with Autism have issues much worse than what we've been through with Jake. Trust me when I tell you that their parents are overwhelmed, exhausted, and near their breaking point. They need this center as much as their kids do. They are desperate for it.
If you're reading this blog, please consider donating to Jake's Place. If every person who visited here gave $1, we could raise around $400 a week to make Jake's Place a reality. Please give. We can't do it without you.
________________________________________
Jake is 3 1/2. He talks mostly in nouns, and doesn't understand his own name. Yet he is a whiz at math and music; trying to play songs on his toy instruments, and already doing simple addition. He watches the same movies over and over, and mumbles key phrases under his breath.He's a beautiful boy; very charismatic. People are automatically drawn to him. This poses a bit of a problem as he really only likes to interact on his own terms. My parents live across the country and just left after a week long visit. He takes very well to my dad, but he's leery of my mom. It was so hard watching her, she wanted to just be "grandma" but she's very respectful and keeps some distance. Finally he came up to her right before they left and he said his only "I" word, "I love you, nana." It was so sweet.
Jake loves to walk, he always has. He would rather be outside then anywhere. This poses some problems, because we live in town, and he has no fear/concept of "danger." He is fascinated by water, obsessed with it, really, and will do anything to get near it, including walking off a cliff or crossing a highway without looking. When he was about two and a half, he got out of the house, and walked right down the middle of the very busy street next to our home. A lady was coming home from work and hit her brakes and grabbed him, and called the police. I was frantically searching for him, and he was two blocks away. I like to take him to the forest and the river because he really seems to come alive there, but I have to be so vigilant. We live in the Cascade mountains, and it's very rugged and wild and filled with danger, and my little Jake is completely oblivious to it. He just knows he likes trees and moss and water.
When he was 18 months, he was just starting to walk, and not talking at all. He was a "good" baby; he never cried or fussed. He liked to watch TV and line things up. My husband is a bit OCD, so we would talk about how cute it was that Jake had to "organize" all of his toys at such a young age. We gave him the nick name "Bruticus" because he was tough like Sparticus and rough like a Brute. He would fall HARD and not cry. He loved to be tackled and hugged tight and tossed around. When you tried to play catch with him, he liked to be hit with the ball. We thought he was "all boy." Around this same time, he started to become a picky eater.Eventually he would only eat plain McDonald's cheeseburgers, grilled cheese and just about any type of meat. No fruit. No vegetables. No juice, ever. No cake, no ice cream. Now he's expanded to bananas, rice and hot dogs on a bun. He gets Easter and Christmas and Halloween candy, and he dumps it out and sorts it by shapes and colors, and lines it all up, but never eats it. Hi likes cake, he likes to play in the frosting - just don't ask him to put it in his mouth! Of course this poses a problem because there is no way he's getting proper nutrition. He's big and looks healthy, but you can't really BE healthy without fruit and vegetables. He won't eat vitamins, and if you try and force him to eat anything, he throws up.
My husband is in the service, and when Jake was 26 months, he was called away on active duty. He was gone for four months. Jake was still not talking, but the pediatrician told us there was nothing to worry about, that boys just talk later then girls. A speech therapist told us that he was tongue tied, so we had that fixed. I had made up my mind that by the time Randy got home, Jake would be talking. He would never ask for things, he would just point and grunt or lead me by the hand. Everyone told me that he was just being lazy, that he wouldn't talk because I did everything for him. So I started forcing the issue. I would not put in his movie unless he said "movie." He would sob and shake and become hysterical, and I listed to every one who told me he was getting spoiled and was throwing tantrums. By the time Randy got home, he was saying about six words. For the next six months, he hardly spoke, occasionally saying one of the six words. He would get very upset when we would leave the house. Randy thought it was because he was affected by their separation, and that as soon as he knew daddy wasn't leaving again, he'd be fine. Now he says quite a few words, but basically only nouns. He can't say "I'd like some water" but he'll say "green cup" or "water." If you ask him what he did today, he'll say "shower shower, sandbox, green truck, water" which means, I took a shower, I played in the sandbox, I rode in the green truck, and I played in the water." His only "I" word is when he says "I love you," a phrase that he's heard ten thousand times.
For over a year I've been trying to teach him to say his name. What's your name? My name is Jake. It's so simple. But for him, it's so foreign. I am "the mommy" and any woman is "the mommy." My husband is the daddy, grandma and grampa are "the" and any child is "baby" or "McKenna" because that's his little cousin's name. Last week we had a huge break through. I asked him to leave his toy in the car when we went into the grocery store. As I took it away from him he said, "No, that's MINE." So here I am standing in the grocery store parking lot, crying like a fool, because my 31/2 year old said "mine".
Taking him anywhere is a challenge, because he can't be still. If he's "strapped in" his car seat or a shopping cart, he's ok. But if I have to take him some place where we need to walk, it's a hard job. He's big for his age, 42 lbs, and I can't carry him every where. If I set him down, he's off and running...touching everything, bumping into people, not watching where he's going. People have started to give me the "you lousy parent your kid is a brat" look. Sometimes I wonder if I should embroider "Autistic" on his clothes. Maybe in a nice scarlet red?
His sleep patterns are all messed up. My husband is full time Air National Guard, and is working horrific hours. I run my own business from home. I don't have daycare. On the best night, he'll get to sleep by 9 pm, and sleep in until 7, maybe only waking up to cry once in the night. On a typical night, he gets to sleep around midnight, and is up by 6:30. Sometimes he naps, and often it will be for a long time - three to four hours. I hate those days, because if I wake him up, he's inconsolable, but if I let him sleep, I know he's going to be up all night long. We need the income from my business to survive. I work when I can, and any time my husband has off, I'm working.
Since the diagnosis, I've been spending two to four hours a week on the phone with Dr's, Therapists, and Insurance. Our insurance card says "the worlds best insurance for the world's best military." I've got to tell you folks, if that's the truth, we should all be very scared. I'm tired all the time. We don't have any family close by, so not much support. My parents are retiring next year and will move here then. I hope it goes fast.
For the most part Jake's a very happy person. Even when he goes off into his own world, he's very calm and peaceful and quiet. He's very loving with his father and I. Lots of hugs and kisses. Lately he's become extremely attached to me. Anytime he gets stressed he's climbing into my lap. Is it bad for me to like those moments? I love it when he's still and warm and soft in my arms.
About six months ago he started reacting to certain noises by covering his ears, rocking back and forth, and humming. If you try and stop him, he becomes hysterical. I can't figure out what sets him off, he does it at such a variety of things. Just the past few weeks he's started banging his head on things. I'm scared of that, and wish the fucking insurance bastards would get their shit together so he could get into therapy.
Friends and family have asked us if he has a hearing problem, because when you call his name he usually won't respond. I'm so tired of trying to educate them, but I know I'm just at the very beginning. Sometimes I want to write out little cards to hand out. "No, he does not have a hearing problem. No, he's not just a "picky" eater. No, he's not spoiled. No, he's not being bratty." But then I go back to the idea of that scarlet A, and it makes me sad.
For the first time, yesterday my husband and I told strangers that he's autistic. We were shopping for a car, and the sales people kept trying to look Jake in the eye and ask him questions, and he would just turn away. He just wanted to look at rocks and flowers. After numerous attempts to engage him and hints that he sure doesn't talk much for someone his age, we finally just said, "He's autistic." The first saleswoman pretended she didn't hear. When we had to explain it again later that day to another salesman, he said "My manager has an autistic son, so I understand."
Watching how people react is both sad and amusing. I don't want him to be labeled and branded. He's so bright and beautiful and incredible, and just because he doesn't fit into societies definitions of "normal" he's going to be branded. Why does it have to be like that? My little Jake. I have never met such an incredible person in my entire life. I know that despite the challenges to come, he's going to stay the incredible human being that he is right now. I'm so thankful that I have him, and that he's not dying or maimed or disabled in some terrible way.But at the same time it breaks my heart that I can't have a conversation with him. I'll see moms and dads in public telling their kids to be quiet, and I want to grab them and scream "DON'T YOU UNDERSTAND HOW LUCKY YOU ARE?? Your child is talking to you! She's telling you about school and her life and the stars above! Drink it in! Savor it! Thank God!!" And instead I just hug Jakey tight, and try my best to understand what he's saying when he talks "Jakespeak."
He often speaks in colors. It took me a while to figure out that "RED RED" meant he hurt himself badly, and "orange" meant he hurt himself just a bit. Sometimes he talks about purple and pink and blue, and I will frantically search around for the object that matches the color...and then I realize there is no object, except maybe in Jake's mind. We've had three good days in a row now. He's been "here" about 70% of the time. He adapted well to my parents visit. He has been energetic and outgoing and "on." When he has days like this, I know I should be working on some thing like potty training or recognizing his name. But I don't want to bring on the stress and anxiety and head banging and ear holding and rocking and sorrow. So I just let him be who he is right now. My little Jake.
_______________________________________
Jake will be 6 December 1. He now has a very broad vocabulary and talks most of the time, but only about 50% of it makes sense. You still cannot have a conversation with him; the only questions he will answer are ones that pertain to his needs. "Are you hungry?" Yes. "What do you want to eat?" Corndog. Ask a question like "what are you thinking about" or "what did you do at school today" and he just turns away and walks off. About 50% of his conversation is from movies or cartoons. He constantly repeats Sponge Bob and Fairly Odd Parents lines over and over and over.
About a year ago he went through a very difficult sensory input phase, where he literally could not be left alone for a minute. He would violently slam doors into the walls leaving big holes, dump out the contents of the fridge on the carpet, scribble in the walls, throw down the kitchen chairs - our house looked like - well I don't know what. He was constantly trying to escape outside, including trying to climb out of his 2nd story bedroom window. We had the windows and doors nailed and locked shut, with these giant special locks and in some cases boards. We would never let people in the house. EVER. And we were so exhausted chasing after him every single minute. Eventually we found a therapy that helped, and it took us nearly 6 months to repair all of the damage to the house. For obvious reasons during this time we never went anywhere aside from the grocery store with him.
I would have given anything to have a place like Jake's Place. Many children with Autism have issues much worse than what we've been through with Jake. Trust me when I tell you that their parents are overwhelmed, exhausted, and near their breaking point. They need this center as much as their kids do. They are desperate for it.
If you're reading this blog, please consider donating to Jake's Place. If every person who visited here gave $1, we could raise around $400 a week to make Jake's Place a reality. Please give. We can't do it without you.
Keeping it real - A much needed reality check comes my way
This morning I got a phone call from my best girlfriend Heather. I met Heather about a year after I moved to Oregon, I guess it was in 1999. Heather ran a shop up the street from the shop that Randy and I had opened in Corvallis. Her hubby was working up in Portland and that's where their place was, so at least once a week for almost two years Heather would stay at our house instead of driving the two hours one way home after work.
As you can imagine, we became great friends - so good in fact that she was there when Jake was born. We stayed very close until she moved to Salem and I moved to Sandy and she had two beautiful kids of her own - Lucy and Ivan TWINS! - and then adopted beautiful little Warran a year later. As you can imagine with three kids under three, she lives a pretty hectic live.
So now Heather and I only get to see each other about once a year, but we do try and keep in touch via email and occasional phone calls. At this point I should tell you that I've always felt really lucky to have Heather as a friend. She's very caring and compassionate and wildly talented - she is one of those "crafty" moms that can make Martha Stewart look lame. Before she had kids she was always the hip one; she knew the trends and how to dress and always knew all the cool people. We have always supported each other in every major aspect of our lives; having kids, buying homes, running our businesses, family issues - you name it, we have talked each other through it. When Jake was diagnosed with Autism I pretty much cut myself off from the world for nearly a year. Heather would call, send me cards, always trying to show her support, and I just ignored her (and everyone else) while I dealt with all of the emotions that we deal with when our child is diagnoses with a disability.
Eventually I came out of our shell and reconnected with my friend, and now we try and talk at least once a month. This morning I received a call that was typical Heather - as usual she was reading my mind and understanding exactly where I am at. The call went something like this:
Heather: I just got done reading your blog, and I feel your frustration about the fundraising.
Me: Yeah, I was pretty frustrated when I wrote it.
Heather: Ever since you started working on this I've had this vision of what you would do for the parents, and I see this little cottage off to the side where they can rejuvenate and be pampered while their kid is working with the horse. I see luxury and flowers and massages and facials and maybe you can get someone to donate pedicures and stuff..."
Me: YES! That is EXACTLY what I'm thinking, because as parents of kids with Autism, we rarely get a break!
Heather: I guess finding child care can be tough...I don't know how much it costs but I know that when you have a disabled child your finances can often be tight anyway, and then what if they don't mesh with your kid...
Me: Yes, a childcare provider who specializes in autism usually costs a minimum of $10.50 an hour. IF you can find one in your area, and since Autism covers such a wide spectrum, it can be really hard to find the right fit.
Heather: If you do the NPO thing, will you still be able to focus on the parents like you want to?
Me: Probably not, the IRS is very particular in how you spend funds when you are an NPO. Plus there is just all this red tape. You have to have a board of directors, regular meetings, filings with the state and federal government - it takes the focus from the kids, horses and parents and moves it to just running the organization under the federal and local guidelines.
Her: Then I hope you don't do it, because it sounds like it just won't work for your organization.
Then we chatted about her new business and the kids and all of that good stuff before I had to go help Jake out of the shower.
I'm so thankful that my friend called me. One of the most important things that I've always received from our relationship is that Heather "gets me." She can see my dream probably better than anyone I know besides Randy, and as always she's right there with her full support. And Heather is right. At this point, it is too early for me to give up on any part of the dream. She understands my frustration with a lack of donations at this point (she's so sweet, she said she's even going to sign up for a Blogger account so she can post comments!) and she encouraged me to keep pushing on.
After I talked to Heather, I went to one of my online news groups and put out a call for all experts who have worked with For Profit charitable organizations. I think I need to talk to some folks who have "been there/done that" so I can see both sides of the issue clearly - which will show me the path I need to take to really get things moving forward.
So thank you Heather! I love you girl, and I am so very lucky to have you in my corner!
As you can imagine, we became great friends - so good in fact that she was there when Jake was born. We stayed very close until she moved to Salem and I moved to Sandy and she had two beautiful kids of her own - Lucy and Ivan TWINS! - and then adopted beautiful little Warran a year later. As you can imagine with three kids under three, she lives a pretty hectic live.
So now Heather and I only get to see each other about once a year, but we do try and keep in touch via email and occasional phone calls. At this point I should tell you that I've always felt really lucky to have Heather as a friend. She's very caring and compassionate and wildly talented - she is one of those "crafty" moms that can make Martha Stewart look lame. Before she had kids she was always the hip one; she knew the trends and how to dress and always knew all the cool people. We have always supported each other in every major aspect of our lives; having kids, buying homes, running our businesses, family issues - you name it, we have talked each other through it. When Jake was diagnosed with Autism I pretty much cut myself off from the world for nearly a year. Heather would call, send me cards, always trying to show her support, and I just ignored her (and everyone else) while I dealt with all of the emotions that we deal with when our child is diagnoses with a disability.
Eventually I came out of our shell and reconnected with my friend, and now we try and talk at least once a month. This morning I received a call that was typical Heather - as usual she was reading my mind and understanding exactly where I am at. The call went something like this:
Heather: I just got done reading your blog, and I feel your frustration about the fundraising.
Me: Yeah, I was pretty frustrated when I wrote it.
Heather: Ever since you started working on this I've had this vision of what you would do for the parents, and I see this little cottage off to the side where they can rejuvenate and be pampered while their kid is working with the horse. I see luxury and flowers and massages and facials and maybe you can get someone to donate pedicures and stuff..."
Me: YES! That is EXACTLY what I'm thinking, because as parents of kids with Autism, we rarely get a break!
Heather: I guess finding child care can be tough...I don't know how much it costs but I know that when you have a disabled child your finances can often be tight anyway, and then what if they don't mesh with your kid...
Me: Yes, a childcare provider who specializes in autism usually costs a minimum of $10.50 an hour. IF you can find one in your area, and since Autism covers such a wide spectrum, it can be really hard to find the right fit.
Heather: If you do the NPO thing, will you still be able to focus on the parents like you want to?
Me: Probably not, the IRS is very particular in how you spend funds when you are an NPO. Plus there is just all this red tape. You have to have a board of directors, regular meetings, filings with the state and federal government - it takes the focus from the kids, horses and parents and moves it to just running the organization under the federal and local guidelines.
Her: Then I hope you don't do it, because it sounds like it just won't work for your organization.
Then we chatted about her new business and the kids and all of that good stuff before I had to go help Jake out of the shower.
I'm so thankful that my friend called me. One of the most important things that I've always received from our relationship is that Heather "gets me." She can see my dream probably better than anyone I know besides Randy, and as always she's right there with her full support. And Heather is right. At this point, it is too early for me to give up on any part of the dream. She understands my frustration with a lack of donations at this point (she's so sweet, she said she's even going to sign up for a Blogger account so she can post comments!) and she encouraged me to keep pushing on.
After I talked to Heather, I went to one of my online news groups and put out a call for all experts who have worked with For Profit charitable organizations. I think I need to talk to some folks who have "been there/done that" so I can see both sides of the issue clearly - which will show me the path I need to take to really get things moving forward.
So thank you Heather! I love you girl, and I am so very lucky to have you in my corner!
Wednesday, October 17, 2007
Wow - Fundraising Sucks!
I made the decision to finally get stated making Jake's Place a reality just about a month ago. During that time I've set up this blog, set up a website (jakeshorseplace.org), sent out email announcements, set up the store, set up the mall, sent out more email announcements, told friends and family, advertised on other websites and extensively on Craig's list. I also hired someone to fund raise for me, but they didn't come through. During all 0f that time I've managed to raise a grand total of $27.40. My latest attempt is running a couple of auctions on EBay selling "Autistic Art" which is artwork Jake did over the course of last year.
I'm kind of amazed at how people will give money to homeless people on the corner, but won't bother to give even $1 to help kids with Autism. I've had several friends suggest that the problem is that I'm not starting a NPO - Ok, maybe that's the case - do those "Will Work for Food" guys have an NPO?? I don't think it really has much to do with that, to be honest. I think it has more to do with people just not caring too much. That makes me really sad.
I told one of my friends who said the problem is being "for profit" that if every person who visited this website gave $1, ONE MEASLY DOLLAR, we'd be raising around $400 a week. Instead, we've raised $27 in one month. How do I explain to my son that he's not as important to people as the homeless guy? Do I just tell him that we are in a jaded times, and people don't help each other out like they used to? Do I tell him that people don't trust anymore, so no one wants to give $1 because they think mommy is going to take all the money and run? Or should I tell him that the truth is just really basic - nobody cares?
I'm not sure what to tell him, but I know for sure that I'm not going to give up. Last week I contacted a friend of mine who has a great deal of experience with this type of stuff. He said, "Get started on getting your NPO status, it's the only way it's going to work." Since I am constantly looking to God for guidance, I figure I should consider the advice that's given. So this week I will sit down and really research what it means to become a 501(c)3 organization. With any luck, things around here will start to change. Man I hope they do - I hate feeling like no one cares.
I'm kind of amazed at how people will give money to homeless people on the corner, but won't bother to give even $1 to help kids with Autism. I've had several friends suggest that the problem is that I'm not starting a NPO - Ok, maybe that's the case - do those "Will Work for Food" guys have an NPO?? I don't think it really has much to do with that, to be honest. I think it has more to do with people just not caring too much. That makes me really sad.
I told one of my friends who said the problem is being "for profit" that if every person who visited this website gave $1, ONE MEASLY DOLLAR, we'd be raising around $400 a week. Instead, we've raised $27 in one month. How do I explain to my son that he's not as important to people as the homeless guy? Do I just tell him that we are in a jaded times, and people don't help each other out like they used to? Do I tell him that people don't trust anymore, so no one wants to give $1 because they think mommy is going to take all the money and run? Or should I tell him that the truth is just really basic - nobody cares?
I'm not sure what to tell him, but I know for sure that I'm not going to give up. Last week I contacted a friend of mine who has a great deal of experience with this type of stuff. He said, "Get started on getting your NPO status, it's the only way it's going to work." Since I am constantly looking to God for guidance, I figure I should consider the advice that's given. So this week I will sit down and really research what it means to become a 501(c)3 organization. With any luck, things around here will start to change. Man I hope they do - I hate feeling like no one cares.
Saturday, October 13, 2007
The Language of Autism
Autism is a unique affliction; it runs the gamet from causing mild speech delays to near total incapacitation, which is why it's called a Spectrum disorder. Children with a diagnosis of Autism are some where on this spectrum, and how they are affected can be amazing, and frustrating, and incomprehensible all at the same time.
Yesterday Jake and I took a trip to the grocery store. Jakey loves the store - he loves to "talk to the peoples" and look at all the stuff on the shelves and, well, SHOP! Although he's nearly six and weighs 55 lbs, Jake has just progressed to the point (within the last two months) where he can walk along with me instead of riding in the cart. Since he's started walking he rarely wants to ride any more, but yesterday the cool red race car shopping cart caught his eye and he wanted to hop in.
Our store has groceries on one side, and house wares, home and garden, etc. on the other side. As we walked in, I started to turn right to go to the garden center, and Jake said “NO, lets go that way!” pointing to the left toward the food. I said we would have to go to the garden center first.
After we finished in the garden center, we started heading over to the grocery section and I headed down the aisles which run north to south. Every time we'd turn down the east-west aisle, he'd say "almost there...a little more..." He did this for six aisles. "Almost there...a little more..." Finally we turned down the cereal aisle, and he said, “That one! That one!” and he pointed down the aisle which has the typical 1000 different cereals. I started walking toward his very emphatic pointing, and about half way down the aisle we got to the Apple Jacks. Jake has never had Apple Jacks, and since he has extreme food sensitivities to the point of choking and gagging on new things, I tend not to buy him stuff that he hasn't had. But Jake was adamant; "That one," he said, “I want that one!” I said, “Are you sure?? Because if I buy it you have to eat it.” “YES! YES! I want that one! It has game! That's cimmaninon (which is how he pronounces cinnamon)!” So I said OK, although I wasn't quite sure what "game" had to do with cinnamon. As I started to put the box in the cart Jake said, “NO! Jake box! JAKE BOX” so I turned it over to him.
Jake held the box the entire time we were in the store. Autistic kids will often grab on to something and seem to become obsessed with it - it could be a block or a crayon or a cereal box.
Usually when we are at the store, Jake will say "Hi!" to everyone that walks past him. Then each time he says "Hi!" he says to me, "I'm talking to the people!" It's thrilling for both of us on different levels, but for me it's really wonderful for two reasons - he is using the word "I", which took him a long time to master, and he is focusing on the people around him instead of his internal world. But there would be no saying "Hi" to the people yesterday, because Jake now had a cereal box! As we continued our shopping he was talking to the box, and I kept hearing "cinnamon game." I was distracted so I didn't stop and ask him what he was talking about , but just continued on to the checkout.
When we go to the checkout Jake put his box on the counter for the man to scan. The man looked at Jake and said, "Hi! How are you today?" and Jake replied, "I'm Jake!" And that's how this disease works - pleasantries that most children learn by the age of three can be lost on a person with Autism for years or even a lifetime.
We finished checking out and headed out to the truck, with Jake smiling and holding his box of Apple Jacks. After we got home Jake helped me carry everything in and then retired to his room for some quiet time. Although he loves to go out, anytime he is around people, lights, sounds and new sights, he needs some quite alone time to come down.
Some time later I was relaxing and I heard him opening something. “What are you doing? ” I asked. With that question he came running down the stairs yelling, “WATCH! I got WATCH GAME!” So I looked at what he was handing me, and sure enough, it was an XBox game that you wear on your wrist like a watch. I took a brief look at it (it looked HARD) and I asked him if he wanted to put it on. "Yes! YES YES!" So I put it on him and turned it on, and figured he'd break it in an hour or so and that would be the end of that. Imagine my surprise when 45 minutes later I went upstairs to check on him and he was on my bed, playing that game. PLAYING IT. He figured out all the buttons, what to do, everything.
I really shouldn't have been surprised, as he has several gifts that are in direct opposition to what the Autism brings us, but I think the dichotomy catches me off guard every time. How is it that he can't answer the question "how are you," but he can play musical instruments, do simple math, and figure out how to play a video game that has complex movements in 20 minutes? It's a strange, strange affliction this Autism; it's a terrible, wonderful thing.
Oh, and by the way - he did eat the Apple Jacks - and asked for seconds!
Yesterday Jake and I took a trip to the grocery store. Jakey loves the store - he loves to "talk to the peoples" and look at all the stuff on the shelves and, well, SHOP! Although he's nearly six and weighs 55 lbs, Jake has just progressed to the point (within the last two months) where he can walk along with me instead of riding in the cart. Since he's started walking he rarely wants to ride any more, but yesterday the cool red race car shopping cart caught his eye and he wanted to hop in.
Our store has groceries on one side, and house wares, home and garden, etc. on the other side. As we walked in, I started to turn right to go to the garden center, and Jake said “NO, lets go that way!” pointing to the left toward the food. I said we would have to go to the garden center first.
After we finished in the garden center, we started heading over to the grocery section and I headed down the aisles which run north to south. Every time we'd turn down the east-west aisle, he'd say "almost there...a little more..." He did this for six aisles. "Almost there...a little more..." Finally we turned down the cereal aisle, and he said, “That one! That one!” and he pointed down the aisle which has the typical 1000 different cereals. I started walking toward his very emphatic pointing, and about half way down the aisle we got to the Apple Jacks. Jake has never had Apple Jacks, and since he has extreme food sensitivities to the point of choking and gagging on new things, I tend not to buy him stuff that he hasn't had. But Jake was adamant; "That one," he said, “I want that one!” I said, “Are you sure?? Because if I buy it you have to eat it.” “YES! YES! I want that one! It has game! That's cimmaninon (which is how he pronounces cinnamon)!” So I said OK, although I wasn't quite sure what "game" had to do with cinnamon. As I started to put the box in the cart Jake said, “NO! Jake box! JAKE BOX” so I turned it over to him.
Jake held the box the entire time we were in the store. Autistic kids will often grab on to something and seem to become obsessed with it - it could be a block or a crayon or a cereal box.
Usually when we are at the store, Jake will say "Hi!" to everyone that walks past him. Then each time he says "Hi!" he says to me, "I'm talking to the people!" It's thrilling for both of us on different levels, but for me it's really wonderful for two reasons - he is using the word "I", which took him a long time to master, and he is focusing on the people around him instead of his internal world. But there would be no saying "Hi" to the people yesterday, because Jake now had a cereal box! As we continued our shopping he was talking to the box, and I kept hearing "cinnamon game." I was distracted so I didn't stop and ask him what he was talking about , but just continued on to the checkout.
When we go to the checkout Jake put his box on the counter for the man to scan. The man looked at Jake and said, "Hi! How are you today?" and Jake replied, "I'm Jake!" And that's how this disease works - pleasantries that most children learn by the age of three can be lost on a person with Autism for years or even a lifetime.
We finished checking out and headed out to the truck, with Jake smiling and holding his box of Apple Jacks. After we got home Jake helped me carry everything in and then retired to his room for some quiet time. Although he loves to go out, anytime he is around people, lights, sounds and new sights, he needs some quite alone time to come down.
Some time later I was relaxing and I heard him opening something. “What are you doing? ” I asked. With that question he came running down the stairs yelling, “WATCH! I got WATCH GAME!” So I looked at what he was handing me, and sure enough, it was an XBox game that you wear on your wrist like a watch. I took a brief look at it (it looked HARD) and I asked him if he wanted to put it on. "Yes! YES YES!" So I put it on him and turned it on, and figured he'd break it in an hour or so and that would be the end of that. Imagine my surprise when 45 minutes later I went upstairs to check on him and he was on my bed, playing that game. PLAYING IT. He figured out all the buttons, what to do, everything.
I really shouldn't have been surprised, as he has several gifts that are in direct opposition to what the Autism brings us, but I think the dichotomy catches me off guard every time. How is it that he can't answer the question "how are you," but he can play musical instruments, do simple math, and figure out how to play a video game that has complex movements in 20 minutes? It's a strange, strange affliction this Autism; it's a terrible, wonderful thing.
Oh, and by the way - he did eat the Apple Jacks - and asked for seconds!
Thursday, October 11, 2007
A Boy and His Dad
Jake is missing his daddy. As he told me today, "Daddy is my best friend. Daddy needs to come out of the phone now. Come home to Jake's house Daddy! And big music show!"
Daddy has been deployed since June, and if you think it's tough for mainstream kids to get through a deployment, you have no idea how hard it is when your child is Autistic. Many people with Autism have a very limited - if any - concept of time. Hours, minutes, days, weeks, months... all are meaningless to Jake. About this time last year we figured out that a "day" had to be related in the time between the sun rises and sets. I don't say to Jake "you have school tomorrow" I say "When the sun comes up again, you have school!" When Randy left for his
deployment, I made calendar pages for June, July, August, September and October. I put little school buses on all the days Jake has school, and little birthday cakes and balloons on relatives birthdays, and the holidays each have their own symbol. Each night we mark off the current day, and we look at the calendar to see what awaits us tomorrow.
Jake seemed to be doing pretty good right up until September. See, Halloween is his favorite "Daddy" holiday. Randy carves elaborate pumpkins for Jake and we decorate the house and we bake cookies and cupcakes, and then we get him in his costume and Daddy takes him all over the neighborhood, which is teaming with kids. Jake loves to ring doorbells and always tries to walk right into people's homes - he wants to check out there stuff! So by mid September, he was getting angry whenever we did the calendar. He stopped speaking to daddy when he called on the phone, and he stopped wanting to cross days off.
Randy knew right away that Jake was mad at him, and it was getting tough for him as well. He is the best daddy I know, and adores his little boy. So one night I had a talk with Jake, and finally he blurted out what was wrong - Daddy home for Halloween? Oh. So THAT was the problem. Randy is scheduled to return home in September of '08, and due to manning levels it did not look like he would be able to get home for a visit at all. It was with a heavy heart that I had to tell him that I finally figured out what was wrong - Jake wanted his daddy HOME for their holiday.
It as a surprise for all of us when a few weeks ago Randy put in for leave and got it - just a few days - spread right across the Halloween weekend. I was anxious to tell Jake that daddy would be home for him after all, and I promptly went and put daddy on the calendar for the day he would be home.
Yesterday Jake took me to the calendar and pointed at it and said "Make x's for daddy!" He thought if we x'd off all the days between yesterday and the day daddy is scheduled to come home, it would mean daddy could come home now. I haven't quite figured out how to explain to him that I haven't mastered time travel yet, but we can only accomplish so much in each 24 hour period!
Jake has been talking to Randy again every day. He wants to make sure that he's still coming home and that they will do Jake's other favorite thing, go to "the big music show." The big music show is the movie theatre, where they watch movies together and eat popcorn and sip on diet coke. Tonight he came up to me and took my hand and said, "Daddy helping people?" "Yes," I said, "Daddy is far away helping people." "Jake want daddy home now. Daddy is Jake's best friend," he replied. Yes Jake, your daddy is your best friend - and your biggest fan.
Daddy has been deployed since June, and if you think it's tough for mainstream kids to get through a deployment, you have no idea how hard it is when your child is Autistic. Many people with Autism have a very limited - if any - concept of time. Hours, minutes, days, weeks, months... all are meaningless to Jake. About this time last year we figured out that a "day" had to be related in the time between the sun rises and sets. I don't say to Jake "you have school tomorrow" I say "When the sun comes up again, you have school!" When Randy left for his
deployment, I made calendar pages for June, July, August, September and October. I put little school buses on all the days Jake has school, and little birthday cakes and balloons on relatives birthdays, and the holidays each have their own symbol. Each night we mark off the current day, and we look at the calendar to see what awaits us tomorrow.Jake seemed to be doing pretty good right up until September. See, Halloween is his favorite "Daddy" holiday. Randy carves elaborate pumpkins for Jake and we decorate the house and we bake cookies and cupcakes, and then we get him in his costume and Daddy takes him all over the neighborhood, which is teaming with kids. Jake loves to ring doorbells and always tries to walk right into people's homes - he wants to check out there stuff! So by mid September, he was getting angry whenever we did the calendar. He stopped speaking to daddy when he called on the phone, and he stopped wanting to cross days off.
Randy knew right away that Jake was mad at him, and it was getting tough for him as well. He is the best daddy I know, and adores his little boy. So one night I had a talk with Jake, and finally he blurted out what was wrong - Daddy home for Halloween? Oh. So THAT was the problem. Randy is scheduled to return home in September of '08, and due to manning levels it did not look like he would be able to get home for a visit at all. It was with a heavy heart that I had to tell him that I finally figured out what was wrong - Jake wanted his daddy HOME for their holiday.
It as a surprise for all of us when a few weeks ago Randy put in for leave and got it - just a few days - spread right across the Halloween weekend. I was anxious to tell Jake that daddy would be home for him after all, and I promptly went and put daddy on the calendar for the day he would be home.
Yesterday Jake took me to the calendar and pointed at it and said "Make x's for daddy!" He thought if we x'd off all the days between yesterday and the day daddy is scheduled to come home, it would mean daddy could come home now. I haven't quite figured out how to explain to him that I haven't mastered time travel yet, but we can only accomplish so much in each 24 hour period!
Jake has been talking to Randy again every day. He wants to make sure that he's still coming home and that they will do Jake's other favorite thing, go to "the big music show." The big music show is the movie theatre, where they watch movies together and eat popcorn and sip on diet coke. Tonight he came up to me and took my hand and said, "Daddy helping people?" "Yes," I said, "Daddy is far away helping people." "Jake want daddy home now. Daddy is Jake's best friend," he replied. Yes Jake, your daddy is your best friend - and your biggest fan.
Wednesday, October 10, 2007
Controversy - The Spice of Life
I knew when I started this blog that there would be people who don't agree with me on various things - some of my views on Autism, how I plan on running my center, how I fund raise, etc.
Below is an email that I received and my reply. I wanted to share it here because I think the points made by both sides are important.
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You are quick to judge successful treatments like the GFCF diet[P.S. it is not hard] and also enzymes are another helpful thing for the kids gut. Why be negative about a cure for many of the kids with autism, not all or even most but many, many, many.....
Mike
And my response:
Hi Mike,
I am not negative towards the successful cases at all! I just think it is irresponsible of anyone to put those treatments out there as THE CURE for autism. It works for some kids and that is a wonderful, beautiful thing – but it doesn’t work for everyone. As for it not being hard – well I’m glad that it wasn’t hard for you! My son choked and gagged and threw up just about everything we gave him, and finally just refused to eat. It was an extremely painful process to get him switched over, and several other parents whom I talked to said the same thing. I can only talk about my personal experiences and the experiences of other parents that I know. (Which unfortunately is quite a few.)
I will post your email up on the blog as well as my response, which will include this: I am in no way suggesting that parents should not try GFCF diets. Some children do respond very well to the diet, and for those children it is a Godsend. My point is that as parents, you should enter into these dietary changes with an open mind, but do not pin all of your hopes on them – because unfortunately dietary changes for many kids make no difference in the severity of their autistic traits.
Thank you for taking the time to write!
Beth
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I know as well as anyone that there are many, many purported "cures" out there. What may help one child may not help another. I think it is up to all parents to decide what therapies to try in an effort to make their childrens' lives better, happier, and more productive, but having your child's best interest in mind means that you must think carefully and clearly before entering into ANY therapy. It is a very sad fact that there are people out there who will prey on parents and offer therapies for autism that not only don't work, but can be physically and/or psychologically dangerous. While I do not think GF diets in any way fit in this category, I do feel like this is a great opportunity to put the warning out there.
Below is an email that I received and my reply. I wanted to share it here because I think the points made by both sides are important.
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You are quick to judge successful treatments like the GFCF diet[P.S. it is not hard] and also enzymes are another helpful thing for the kids gut. Why be negative about a cure for many of the kids with autism, not all or even most but many, many, many.....
Mike
And my response:
Hi Mike,
I am not negative towards the successful cases at all! I just think it is irresponsible of anyone to put those treatments out there as THE CURE for autism. It works for some kids and that is a wonderful, beautiful thing – but it doesn’t work for everyone. As for it not being hard – well I’m glad that it wasn’t hard for you! My son choked and gagged and threw up just about everything we gave him, and finally just refused to eat. It was an extremely painful process to get him switched over, and several other parents whom I talked to said the same thing. I can only talk about my personal experiences and the experiences of other parents that I know. (Which unfortunately is quite a few.)
I will post your email up on the blog as well as my response, which will include this: I am in no way suggesting that parents should not try GFCF diets. Some children do respond very well to the diet, and for those children it is a Godsend. My point is that as parents, you should enter into these dietary changes with an open mind, but do not pin all of your hopes on them – because unfortunately dietary changes for many kids make no difference in the severity of their autistic traits.
Thank you for taking the time to write!
Beth
__________________________
I know as well as anyone that there are many, many purported "cures" out there. What may help one child may not help another. I think it is up to all parents to decide what therapies to try in an effort to make their childrens' lives better, happier, and more productive, but having your child's best interest in mind means that you must think carefully and clearly before entering into ANY therapy. It is a very sad fact that there are people out there who will prey on parents and offer therapies for autism that not only don't work, but can be physically and/or psychologically dangerous. While I do not think GF diets in any way fit in this category, I do feel like this is a great opportunity to put the warning out there.
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