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 balance 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.

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 guess because we spend so much time together I don't always pay a lot of attention to what's going on in the world around us as far as what other six year olds are doing. Jake has made so much progress and come so far in the past year, that I might even be in a little denial about where he's at in the world. I tend to view him as an extremely bright, social, intelligent person, and I figure everyone else sees him the same way. Sure he needs a little assistance navigating the world, but who doesn't now and then?

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.

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!

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.

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."

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!

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!

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.

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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.
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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!

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.

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!

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.

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.

I have a helper! Yay!!

Since I started this blog and began putting together the very basic ground work for making Jake's Place a reality, I have been having a tough time figuring out how I was going to do all of this by myself. I knew that I needed some help, but it had to be someone that I could really trust, would be motivated and caring, would have some experience raising funds, and I had to be able to afford them. What a task!

I was starting to feel a little down in all honesty, because I realize that trying to do this all by myself means that it will be a long time coming to fruition - there is only so much time I can put it on my own, and fund raising takes a LOT of time - but I honestly believe that the Lord is guiding me, so I knew it would all work out when the time was right. That time came faster than I had expected when last weekend I had a long conversation with Randy's birth mom, Carolyn, and she offered to come on board to assist me in making Jake's Place a reality.

Carolyn has been serving the Lord for over 20 years now, working in ministry and helping troubled kids. Over the past few years she has had a series of devastating blows, including trying to work from home while taking care of her seriously ill mother, so this opportunity was a God send for both of us; I get the help I need and she gets to work from home! We are currently in the process of trying to get a solid plan together and get the fund raising ball rolling, and hope to start making progress very soon.

Welcome aboard Mom!!

Raising Funds the Hard Way - wow $165K is a lot of money!

Yes, yes it is. But starting and running a first class therapy center takes a lot money. Horses take a lot of money. Feeding horses and vet care for horses and foot care for horses all takes money. Then they need blankets and barns and bedding and shoes and quality feed and sometimes special diets - and we haven't even gotten to arenas and trails and lounges yet!

My dad asked me the other day how I came up with the $165,000 figure, and I think my supporters/donors would like to know the answer to that question as well, so here is a general breakdown.

$22,000 - Training. I need to go through an accredited EFEL course to become a facilitator, and I also need to complete NARHA certification.

$75,000 - Down Payment on Farm. In our area, the type of farm we will need would cost about $750,000 ready to go. We can do renovations and repairs and updating ourselves, which means we can buy a "fixer" farm for about $500,000. We will need to put 20% or $100,000 down. We have about $25,000 in equity in our current home, which means we need to raise another $75K for our down payment.

$30,000 - Barn, Arena and Lounge Improvements. Since we will be buying a "fixer" farm, we will of course need to fix the horse part of the place up before we can start accepting clients. Fixing includes making sure stalls are safe, arena footing is safe, fencing is secure and safe, and that our lounge for parents is completed.

$24,000 - Six Months worth of Operating Expenses. We will need some time to get the improvements done and our client list built up before we can expect the center to start bringing in any type of income. Covering six months worth of expenses will give us time to get that accomplished.

$14,000 - Advertising, Legal and Office Expenses. We will need to do a big advertising push to the get the word out that the center is open, and to show the world what we have to offer. Before the first client arrives, we will need insurance and contracts and release forms. We will need computers and forms and office supplies to keep everything running smoothly.

There are quite a few things that aren't listed, like HORSES! and tack and equipment and a truck and a trailer and 1,000 other things. I hope to be able to contribute most of those items on my own, and I do currently have several people who have offered donations of horses and tack (THANK YOU!!). So that is a general breakdown of what we need funds for. It is a monumental task trying to raise that amount of money with no advertising budget and basically just sending out emails and posting on the web. But I have faith that the funds will come through, and that through the grace of the Lord, we will get to exactly where we need to be!

Jenny, Jenny, Jenny...

Oh Jenny McCarthy, I know you mean well. I know your heart is in the right place....but.

And it's a big but. I would hazard to guess that 95% of US parents, when told their child has Autism, heads straight for Google. I know we did - we researched and read and researched and read until we couldn't read any more. We wore out keyboards, I kid you not. We wanted to know, WHAT, HOW, WHO caused our beautiful little boy to have this terrible affliction.

We heard lots of theories about Autism, but the two that seemed to keep coming up over and over were that Autism is caused by Thimerosal, a mercury (50%) based compound that was once used as a stabilizer in vaccines (and many other products), and/or was caused by or exasperated by Gluten.

I've always lived my life by the "everything happens for a reason" perspective, so it was during all of this researching and reading that I finally understood something about myself that I hadn't been able to figure out - why I had spent 4.5 years in college studying Molecular Biology and another 3 years working in research before I finally called it quits and went into business for myself. I mean I enjoyed research, and I did some good work while I was still in that life, but the fact was it was not my passion, and I had always known that. I could never really figure out what drove me to learn it - it's not exactly the easiest subject to learn - but when I found myself submersed in research abstracts and science periodicals studying Thimerosal and the effect of Gluten on the human body, I had one of those AHA moments! This was something I knew something about, and I was really anxious to discover how so many parents had come to the conclusion that vaccines were the culprit. Bring on the science!

Well, I hate to tell you this Jenny (and all the other band wagoners) but as of today, there is absolutely no factual scientific evidence to support that vaccines in any way contribute to Autism. And here's another one especially for you Jenny: your son is around the same age as mine. Jake was born in 2001 and had the "suspect" vaccines in 2002. But you you know what? They had already started to discontinued the use of the mercury compound Thimerosal in 1997 as part of the FDA Modernization act of 1997. Most vaccinations today do not contain Thimerosal at all, and the ones that do have such ridiculously low amounts (micro grams and lower) that my fillings would be doing more damage then these vaccines. (They've pretty much phased out mercury in fillings as well, but I've still got some real old ones in there!)

As for Gluten, there are some correlations showing that some autistic children when put on a gluten free diet show some signs of improvement, NOT CURE, but improvement - but as we all know, correlation does not equal causation. My son has gone through some amazing changes over the past five years, and during that time he's also started wearing under pants. AHA! Under pants cure Autism! Well...not so much.

I, as well as anyone, understand the intense desire to find out what causes our children's ailments, and I personally have been caught up in that all consuming desire to find someone, ANYONE to "blame" for Jake's Autism. But the fact is that while it may bring a sense of relief to point a finger and say AHA! Thimerosal! and AHA! Gluten!, the really hard truth is - and I'm sorry, because I know it's painful to hear - but the fact of the matter is that all of those claims are based pretty much solely on junk science and personal anecdotes.

I am thrilled for Jenny MacCarthy that her son showed great improvement after a change in his diet. Unfortunately for my son - and thousands of other kids with Autism - becoming gluten free had absolutely no effect what so ever, and the process the family and the child has to go through to become gluten free is painful and arduous. (Although I can imagine it would have been much easier for us if we had an in-house dietitian and gourmet cook on staff!)

Jake, for example, is very food taste/texture intolerant. He cannot eat a vegetable or most fruits. He will gag as soon as they go in his mouth and he will then immediatly throw up. His main diet staples are corn dogs, toast, peanut butter and jelly sandwiches, and plain cheese burgers, with the occasional grilled cheese or quessadila thrown in (oh, and he loves brownies). He is so sensitive to taste, that if you give him a different brand of corn dog, he cannot eat it. (And yes, we're sure he's not just seeing that the box is different. I was a research scientist, I know how to do a blind test) So as you can see, just about every thing that he eats has gluten in it, and making the change to gluten free products (they really do have gluten free corn dogs! And waffles!) was more than a little painful.

So to Jenny MacCarthy - thank you so much for doing your part to bring Autism back into the minds of the general public, you've just made it a lot easier for researchers to raise funds - but I wish you would have done a little more research before you labeled a "cause" to this disorder.

And to all of my wonderful, loving, caring friends and family who I couldn't do any of this without - you can stop sending me links to Jenny's interviews and articles and book now. I've done my homework, and I have a little different reading list. :-)

Calling all Internet Shoppers!

We'd like to invite you to shop Jake's Horse Place Internet Mall!

If you already shop online, you know what a safe, hassle free, and comfortable way it is to shop. Our mall offers lots of the same stores you probably already visit on line - stores like Target, Best Buy, and even Walmart. In fact, our mall features over 500 great stores, so you are sure to find just want you're looking for, and best of all, Jake's Place will receive a percentage from every purchase you make. It is a win-win situation, and all you have to do is show our mall from this link.

So please save our link Jake's Horse Place Internet Mall to your favorites, and pass it on to your family and friends. We appreciate YOU!

Raising $165,000 - one dollar at a time!

Funding Update: As of today, we've raised $26! Don't laugh - each and every single dollar we raise counts towards our final goal, and we greatly appreciate all purchases and donations, no matter how large or how small.

I have approximately 550 days to raise $165,000, which means I need to raise approximately $300 a day. Right now we are no where near that goal, so my job over the next couple of days is to expand the store and continue to get the word out. If you know of anyone who you think would like to support our cause, please forward them a link to our blog.

We are currently fundraising in two ways: Accepting cash donations ($20.00 to date!) and by earning a commission on items sold through our shop ($6.00 so far!). If you haven't visited our store, please do! We have some great items , including Jake's Place EFEL Tshirts, tote bags, coasters, stickers and buttons, and Jake's Place Autism Therapy teddy bears, buttons, magnets and more!

A big thank you and (((HUGZ))) to those of you who have already shown your support! You are helping me lay the foundation of Jake's Place, and I appreciate you more than you could possibly know!

Equine Facilitated Experiential Learning

When I talk about opening Jake's Place, one of the most common questions I get is "What the heck is Equine Facilitated Experiential Learning (EFEL)"? EFEL is, in its simplest form, is using horses as mirrors and facilitators to help us explore issues or areas of concern in our lives. The horses may help us achieve self awareness, solve problems, and uncover issues in our lives that are holding us back and keeping us from advancing on a physical, spiritual and/or emotional level. EFEL is not psychotherapy, and should not be used in place of psychiatric treatment, or to try and deal with psychotic/psychiatric disorders.

I first heard of EFEL when I read Linda Kohanov's book The Tao of Equus, and before I got through Linda's explanation, I knew exactly what she was talking about. One of the reasons I believe I have had such a deep connection to horses my entire life is because of their ability to help me heal from various traumatic events starting when I was very young. Women are often faces with things that men are less likely to encounter; physical abuse from partners, sexual abuse and molestation, and subordinate treatment from various sources including teachers, employers and partners. Long after we have dealt with these issues in a psychiatric setting, we are often still struggling to regain our personal power and heal our inner child. Horses are the perfect partners to aid in the final steps of our recovery processes.

My goal for the EFEL side of Jake's Place is to provide a safe, nurturing environment where women in the final stages of recovery (be it from abuse, addiction, low self esteem, etc) can explore and finalize their healing through the way of the horse. Our EFEL center will offer a safe, comfortable environment for exploration and healing.

Who are the horses? Glad you asked!

We currently have two horses on the roster at Jake's Place, my 19 year old Arabian mare Provacative (Proletariat x SF Katia) and our little girl My Little Obsesshahn (Bey Intuishahn E x GW Barbidansk).

Pro has been with me for a little more than three years now. She's an interesting horse; generally grumpy and not real friendly, Pro is not the horse that you would look at first when you think "therapy horse." But she really becomes a different horse around kids (she is especially protective of the little ones) and when she has precious cargo on her back, she suddenly becomes as incredibly beautiful on the inside as she is on the outside. Since Arabians tend to live long lives, with any luck Pro will be with us for many, many years to come.

So far Obie is the exact oposite of Provacativ. Always friendly and seemingling full of joy, she openly loves people and is the first one up to the fence for a love and a scritch. It will be a long time before anyone is riding Obie, but in the meantime she can do a great job of standing around and looking cute, and eventually be a great horse for kids to learn to groom on.

Is there a need?

When I share the dream of Jake's Place with other folks, I tend to get mixed reactions. Some are happy for me and instantly supportive, and other's tend to ask two questions: Aren't there already therapy centers out there? and Why aren't you going to be an NPO?

To answer the first question, yes, there are a lot of therapeutic riding centers out there, and they do great works and accomplish wonderful things and change lives. But as a parent of a child with a disability, I have to say that the majority of the therapeutic riding centers out there today do not meet my needs.

When children without disabilities go to ride horses or take riding lessons their experience is very, very different than the experience of those with disabilities. When a mainstream child goes for riding lessons, for example, they usually spend a day or two learning about horses, how to walk around them, how to approach them, how to brush them and groom them, and then how to saddle them and prepare for riding. Once they have learned these tasks, they are placed on the horse and either in a ring with the instructor holding a lead line that is attached to the horse, or without a line, they are taught how to sit and hold the reins and communicate with the horse to get it to walk, and then later to go faster. If the kids are going to a "trail ride" place, where trail horses are used to give people guided rides, they are usually put on the horse and allowed to ride by themselves.

Contrast this to therapeutic riding for kids with disabilities: They may or may not be given an opportunity to pet and greet the horse. Then they are placed on the horse with someone walking next to them on each side, and one person out front, leading the horse. They are then led around the ring in circles; sometimes they do therapeutic games like opening mail boxes or "picking apples." Then they are taken off the horse until they come back next time. It is assumed that because a child is disabled, he or she is not capable of approaching horses the way the rest of us are - maybe out of fear of injury, or out of lack of confidence, or whatever - but the fact is, in general, their experience with horses is very far removed from those of children without disabilities.

There are a few centers in the US that have started using a more hands on approach, but at this time, they are still few and far between. I know from my experience with my son and other children with autism that he is very capable of learning how to "be" with a horse. The teaching is different, the approach is different, but the end result is that children with autism are, in most cases, perfectly capable of learning to ride and care for a horse, and horses make excellent healers. It is a match made in heaven.

As to the second question, the reason that Jake's Place will be a for profit enterprise is pretty straight forward. Children with Autism have parents, and those parents are usually realllly stressed and realllyyy tired. It is rare that we have regular baby sitters and get out on our own on a regular basis, so it is important to me that when a parent brings their child to Jake's Place for their lesson, we have a first rate facility in place for the parent to relax. For the hour that they are at our ranch, I want those parents to be sitting back with their feet up, enjoying soft music and smelling good smells and snacking and relaxing and destressing. I do not want to have to justify to any entity - and especially the US Government - why my NPO horse center has a lush and plush lounge with state of the art electronics and gurgling fountains. And really, I know that there is only so much grant money to go around, so many NPO funds to go around, and I am confident we can operate on a for profit basis and with the help of the Lord and contributions from caring angels, we will be just fine.

If you're interested in helping Jake's Place, please visit our store, where you will find some great swag, or feel Free to make a non-tax deductible donation! Any little bit helps, and we appreciate every penny that comes in!

In the Beginning

Looking back I can't remember when the exact date was, but I guess it was in late 2002. I was at a crossroads in my life - a dark, damp dead end that held me in its steely claws of indecision - and I was finally ready to wake up to the sun, if only I knew how.

2001 had been a very rough year for us. We had lost our business and most of our friends, and the baby that we hadn't expected turned out to be a whole lot of work even before he was born. My husband decided to go back to college, and I was struggling to support the family on income from my then very small marketing business, and when I couldn't work because of complications from my pregnancy, it seemed like we'd be having our baby out in the street.

But then the tide turned and things started to come together as they so often do, and our beautiful little boy was born and I went back to work and my husband was doing great with school and all seemed right with the world. Except something wasn't right. I had a stirring, a restless calling deep in my soul, and I needed to find a way to figure out what it was that was missing from my life. I actually had a pretty good idea of what it was, but I was having a hard time facing it. There was no way I could go there in my head, because the second I did, my heart would be broken. So I did what anyone in my position would do, I ignored what my soul was telling me and went on to pursue a whole bunch of meaningless other stuff to try and shut my inner self up.

If I remember correctly, during the course of that year I started to learn digital photography, I got involved with a "save the trees" organization, I started exploring and mapping back forest roads, I found a group of online friends to email and talk to, and I started redecorating. All of this made for great busy work, but it did nothing to stop the clamoring in my brain. It was during a trip to see my in-laws that my soul completely over powered me, and I heard myself nonchalantly saying to my husband "I don't think I can live much longer with out a horse in my life. It's been 10 years, and I really don't think I can go another day." What? Huh? Who said that!?? In the four years I had been with my husband, I had brought up horses maybe once, and so he did what any good husband would do, he looked at me like I was insane.

It was decided that I could not have a horse at that time, but my father-in-law did go out and buy one (I need to thank him for that again) and I before I knew it I was riding once every month or two. Surprisingly, this did not help. In fact, it seemed to make things worse. So of course it only makes sense that I would start trying to get my horse fix other ways; reading books, buying magazines, looking at horses for sale online and finding other horse folks to talk to. One day I walked into Borders to see if there was any new material to get my fix, and there I saw a book that I hadn't seen before, The Tao of Equus. The cover was cool and the back intriguing - here was a book about my first true love, horses, and something that I seemed to spend my entire adult life trying to achieve, healing. By the time I finished the book a week later, I knew what my calling was - I needed to open my own equine facilitated experiential learning facility.

I knew opening my center was what I was supposed to do the second I learned that there was such a thing. Over the years I had become very involved in my spiritual quest, and I had many women come to me for advice or help, and I found helping women discover their own inner power the most rewarding part of what I did. The second I realized that people were using horses to help women find themselves, I knew that was it. At that moment I decided that I really needed to buy a horse, and in March of 2003 I bought my first horse in 10 years, a lovely Arabian mare.

Once I had my horse, life got busy in a hurry. My husband decided to re-enlist in the service and was deployed, my business was picking up, and my son was having some developmental issues. The next thing I knew it was August of 2005, and my beautiful little boy, the joy of my life, my sunshine, my reason for being, my little Jake was diagnosed with Autism. In that moment, my world came to a screeching halt. I couldn't breathe, I couldn't think, I couldn't live, and the only thing that got me through was my daily trip to the barn. Without those big brown eyes sending love my way and that musky scent of horse and hay waking me up each time I entered the barn, I really don't think I would have made it through that very difficult and very painful period in my life.

The next year and a half found me enveloped in the land of "Parents of a child with a disability," which was a scary, crazy, maddening place to be. We met with specialists, psychologists, OTs, STs, PTs, and the state Early Intervention providers. We had to learn how to live in Jake's world while simultaneously working to draw him into ours - always trying to draw him into ours.
Over the past year and a half, Jake has made some great improvements, some amazing improvements, some of which can only be attributed to our Lord and Saviour Jesus Christ. Others came through hard work on all of our parts, but especially Jake's part. Since his disability causes him to be oblivious to danger, and since he gets very excited and hyper when presented with new stimulation, I kept my horse life separate from my world with Jake. I used my horse time to renew, recharge, and refocus. I never lost site of my dream to open my center, but I never got any closer to making it a reality, either. Then a few months ago, something wonderful happened. Jake came with me to the barn.

Horses have an amazing ability to heal humans, but beyond that, certain horses (the Arabian breed is knows for this trait) are able to sense when people are in need - be it emotionally, physically or even developmentally. The day that Jake came to the barn with me, I put him up on my mare, who is fairly high strung and off the lead line is only suitable for an experienced rider. I knew that she would be well behaved while I led her around, but her reaction in the ring surprised even me; the second Jake was on her back she immediately lowered her head and relaxed her whole body, taking each step like she was well aware of the precious cargo on her back. 30 minutes later I had to force Jake down, and he was a different child. Riding seems to give him a different type of aweness, and he seems more secure in his world as a result.

So now I know the rest of my future, and my calling is complete. I am working towards opening Jake's Place Equestrian Center - where horses heal humans. Jake's Place will provide two distinct yet complimentary services; providing therapeutic hands-on horse skills to children with Autism, and providing Equine Facilitated Experiential Learning sessions for women seeking growth, recovery and/or change. Jake's Place will be a for profit center, providing excellent service and amenities in the incredibly beautiful setting of the mountains of Oregon.

I am currently in the beginning stages of raising the $165,000 needed for a down payment on the purchase of land and facilities. If you would like to see Jake's Place become a reality, you can show your support by purchasing items from our shop, or by giving a cash donation. We have a long way to go to see Jake's Place open to it's first visitor, but I know that with persistence, dedication, and a little help from the angels along the way, we'll get there!