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.