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.