Autism Q & A Under way!

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

Thank you Donors!

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

Christmas is for Kids

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!