My first entry into my Journal, and now that I have created my new site/blog/journal, my mind is blank. So I thought I would start with a entry from my older journal, something I wrote a while ago, that is part of the core of my life. I hope it is a good reflection of my feelings deeper then my daily smile to friends and co workers. I read others Blogs and Journals, and I try and get a feel for the person writing. Some are so young, their just starting to live, other older, like myself.
"My day starts with the rythmic banging on the wall or door echoing thru the house, and a loud "DADA" "DADA" "Mama" "I stuck" "Help! I stuck" yelling from the hallway upstairs. I jump out of bed, hoping that I can get in there before he wakes my wife and older son. I grab my sweat or jeans and my wife murmurs thanks as I dash out of the room and to Daniel's door. I unhook the latch, and then move the safty gate, and there he stands. "Hi Dada" he says with a big smile on his face. He reaches up and I take him up into my arms, where he hugs me tight. With my foot I push his bed back into place along the wall, a sure sign he has been awake for a little while, his bed moved around, his toys in disarray. His zip up jammies on backward to keep him from taking them off.
I walk over to the window with him in my arms and reach down and pull the shade up to let the sunshine in. He looks out the window at the pond beside our house, the bars from the window safty bars making strange shadows on his face.
"Hi Dada" he says again. "I wan schip, hungee." he says. I turn and we head out of his room and to the top of the stairs. I put him down and take his hand before he can walk off the edge of the stairs. Carefully one step at a time, we go down the stairs that way, me holding his hand, him tettering on each stair, leaning forward. As always we stop in front of the little mirror on the wall so he can make faces at himself, drawing a deep giggle from him.
Once at the bottom of the stairs, I move the safty gate to allow him to go into the livingroom, where he climbs onto the sofa, and lays down looking at the blank TV.
"Scooby" "Mickey" "Blue" "Bear big house" he says in one big sentence. I go to the video case and pick out a movie, he say "no way no way no way" I try another and he lays back to watch.
I let the dog out, as he watches Barney for the 80th time, and put coffee and toast on.
He lays quietly for a bit watching the movie, then gets bored. "Izy hungee, wigyg dada" "peeze" he says as he rubs his tummy. He moves around from toys to tv to rockinghorse, only stopping for a few seconds at each before moving again. He climbs onto a Chair and I stop him before he falls off. He moves around, runs, trips and falls, gets up "I sorry" he says looking at me, "are you ok?" he asks as if I was the one to fall.
He gets his toast and lays back to eat it watching the tv again. I take this chance to change him, and get him dressed for his day.
"Ok Daniel, squirts" I say and he says "no way" and tries to clap his mouth shut. "Squirts Daniel" I say again and put the end of oral suringe in his mouth, and press the handle. 6mg with breakfast, 6gm with lunch, 6gm before bed. I try not to think about the awful side effects of the meds he has to take 3 times a day. He swallows the meds today, good boy. He doesnt always, sometimes he waits until I turn and he spits it out over he shirt or the sofa.
I get him a sippy cup with water. He drinks and then tosses it behind the sofa, then asks for it again. I get it, and he looks back at the tv as I sit to do my email, but then I get up and check the safty gate and the locked kitchen door first. I turn around and he has pulled all the tapes from the tape stand.
"Scary" he says and I know this is Scooby Doo he wants. I put it on for him and listen to him giggle at Scooby's antics. I do my email and then surf for a few minutes while I have my coffee.
After a bit I put on his shoes and we go out to the store. "Hotdog" he says. "No Daniel, not til later" "French Fries" he says. "No Daniel not til later. We drive to the store and get out. I get him out of the carseat he is too big for and we walk hand in hand to the store, he only pulls away to try and run twice during the 50 foot walk. I grab a cart and put him in. He doesnt like this at all, and a loud high pitched screech ring out thru the store. Everyone turns and looks and I quiet him be grabbing a box of something for him to hold.
We head down the isle, and I start loads the items I want into the cart, I hear a loud smack and turn around to see Daniel had tossed most of the items out of the cart and there is a line of items on the floor behind us. I grab his sippy out of the diaper bag, and give that to him and load the cart back up. I move along with him, and then head for the checkout, but stopping and getting him a bag of chips along the way, his favorite food.
We get into line and there is a child in front of us, about Daniels age, maybe a little younger. She's talking up a storm with her mom, and tries to talk to Daniel. He just stares then babbles at her, and even I can't make out what he is saying. She is about to try again, when her mother stops her, and pulls her in front of the cart. I look at the mom, and she meets my eyes for a second. And I can see that look. A mix of fear, dismay, uncomfortable silence and most of all, he isn't normal, and it might be catchy. I do my best to smile.
Daniel just looks on, and then I feel his hand on mine. I look down at him and he talks his own talk to me, and smiles up at me. I smile back and lean down, and he puts his arm around me, as if on some level he knows how much I ache inside.
We move forward in the line and we check out, the people around us avoiding my eyes, the kids pointing or whispering to themselves.
No one helps me out to the car with the full cart of bags, I am a man after all, even if I do have a kid with me. I load the stuff into my Jeep and get Daniel out of the cart, and grab his arm as he tries to run away. I get him into the Jeep and then push the cart to one side, I wont leave him alone so I can return it to where it belongs.
I didnt get any frozen things I had to worried about and Daniel is clearly hungry, so I head over to BurgerKing where they have a playground, only having to endure a few minutes of screaming from him as we by pass McDonalds and his second favorite food, french fries.
I get him out of the car and head into BurgerKing and he tries to race off to the playground, any thought of getting lunch forgotten. I pick him up and we walk over, him squirming to get down. I get his shoes off, and he tears of up the plastic climb tubes, in his own awkward way. There are a lot of other kids around, and some a bit bigger then him, but not many that could still fit in the play ground. I walk the lenght of the tubes to the exit, and watch him as he goes thru.
Soon, the other kids try and engage him to play with them too. But he just keep plodding along, trying to make it to the big slide. He falls and gets back up once, twice, three times. He stops to investigate the side windows. He gets pushed aside by the bigger kids, and knocked down. He cries and I call to him, and he gets moving again. A pair of twin girls are there, and they start pointing at him. An older boy rushs past, really too old to be in the playground. Daniel either trips or is pushed, but I hear him cry out and laughter.
I call him again and he gets up and looks thru the netting and tells me what happened, looking down from 12 feet above me. He lend out into the net, and I tell him to come on. He starts again, and gets to the top of the slide. He yells down the slide and listens to the echo, a burst of giggles come from him, but are cut short and the two girls shove him aside and fly down the slide. The older one makes a comment about a dummy, and they rush past me to get back to the front of the line. Daniel gets on the slide and laughs all the way down and I grab him at the bottom and lift him up over my head. He laughs and laughs, his eyes bright and shiny, smiling his happy smile. And I carry him back to the start of the course.
He starts up the climbing tubes once again, and balances at the top, and big kid pushing him from behind and Daniel just can't get his legs to move fast enough to get out of the way. The kid is much older and heavier by maybe 30 lbs. Daniel trips and falls, and the big kid just steps right over him, stepping on his hand in the process. Daniel crys out, and I feel my back teeth grid together. The kid just keeps on going, rushing to catch his twin sisters.
One little girl climbs up behind Daniel, and stops. She holds out her hand, and he climbs up to his feet and take it. She guides him thru the maze of climb things. I can't hear what she is saying, but I can hear him babbling, and at one point singing the theme to blue's clue "Mail Song". The twins barrel past me, and back up. Daniel is mid point thru the maze and the girls catch him quickly. Unaware that I am watching, one of the twins slips between Daniel and his new friend, and the other puts her foot out. Before I can utter a word, Daniel goes down hard. They laugh and run away, and I hear words like Retard and Stupid from them.
Daniel Screams so loud it hurts my ears, and I am moving as fast as I can toward the slide to get up to where he is. Not the first time I have been in there, thou it shakes badly with my weight. He has been stuck in there before.
But before I can get in there, the little girl has him has him calmed down and is leading him to the slide. As I reach the bottom of the slide, the three kids come out and I glare at them. They scatter, heading back to their parents. The fury inside me is like a hot living force. I want to scream at the kids, to knock them down like they did to my son. I want to make them see how awful they really are.
Daniel comes down, his face still wet from his tears, his new friend right behind him. "Ouchie Dada, Ouchie". He has blood in his mouth from biting his lip. The girl tries to explain, but i look at her and let her know it was ok, and thanked her for being so nice to him. She says "It ok, my bother is special too" Smiles and takes off to her table or where ever. Daniel cuddles into my shoulder, and sucks his thumb. I walk back to the food section and look for the kids that hurt him. I spot them with their parents, sitting over on one side, and I make my way over to their table.
When I reach the table, I hear the boy say "Mom, it's the retard" And I look at them. I am speechless at first. The twins have their feet on the table, and one is under the table, they have thrown food everywhere.
I look at the parents, and thou i wanted to scream, I nicely ask if they could ask their children not to shove Daniel around and maybe they could teach their kids some manners. They just glare at me. The father stands up like he is going to give me a hard time, starts to get right into my face, but the look on my face must have made him have second thought about it, because he backed down. I am not a big man, and he must of had 45 lbs on me, most of it beer belly. But he must have realized thru my look that I was some pissed off. I make a special point of going over to the nice little girls family and telling her parents what a great kid she is.
I walk away, still holding Daniel and I want to get him something to eat, but he wants none of it. I put him down and grab his shoes. As soon as he see them he goes limp, straight to the floor and starts screeching. I get his shoes on, all the while he is screaming and hitting me, and kicking up a storm. He wont stand up, and I feel the familar pulling in my back as I dead lift his 62 lbs off the floor. Everyone is staring. Time to go, and I repeat this fact to Daniel who is still yelling like I am trying to kill him or something. I hear someone say that kids like that shouldnt be allowed in public, and my heart hurts so bad I want to hit someone, anyone.
I get Daniel up and I cuddle him tight against me, and talk to him, try and calm him. I feel myself shaking slightly from him weight, but more from anger. The playground is one of his "Happy places". One of those places where he runs and plays and just pure happiness and joy pours out of him. And now he was the target of meaness here.
He quiets down as we walk towards the car. I put him in back and strap him in, still feeling unhappy and furstrated. I climb in the front and breath deep for a minute, gathering my thoughts. It is bright and sunny out, and warmer then normal for April. I start the Jeep and head out of town towards home. Just before we get there I decide to go to my older sons school and see whats up at the playground there. If there arent a lot of kids, Daniel could play there for a bit.
Daniel starts making happy talk as soon as he sees all the swings and climbing equipment. We jump out and this time I run behind him, letting him run on his own to the swings. I help him up onto one, and snap the safty bar over his lap. He uses the safty swings he can barely fit into, because he likes to lean way back and would fall right off a normal swing. I push him for a few minutes, and then he spots a bunch of kids off to the side playing Tag. "Dow dada" he says and then takes off after them. He stops before he reachs them, and watches for a minute, putting his arms up so I will pick him up. He looks at them runs and tagging each other, and his eyes get shiny and he face is lite up smiling. He wiggles until I put him down and then he runs over toward the group of kids, then suddenly cuts off on a 90% angle to them. I race over and catch him before he gets to the parking lot. He looks at me and smiles, and looks around for something. He says something and then runs at the group again, this time a number of them are looking at us. And again he gets about 20 feet away and cuts off again, charging straight for the jungle gym, head down, in his awkward gate. I grab him just before he hits the metal pole of the slide full on. He spins around and charges back toward the group. And cuts away again. This time he is headed towards the open field and I let him run a bit, and I trail behind. He stops and looks around. He is playing "Catch me", I know this because I know Daniel. But he looks toward the group of kids again, and they are busy playing their game. He does this over and over, in a pattern that only Daniel understands. Soon he tired and comes over to me and I pick him up. He hugs up to me, and the shiny look is gone from his eyes. He watched the other kids play together, the smile gone from his face.
The doctors say that he is unaware of other kids, and it is true that he rarely tries to engage them in play, especially free play. But I see it differently. He is confused. And worse, I think he is understanding he is different. Before on his birthday, no one would show up from his parties, but we made it a fun day anyways, and he was happy. Now, you hear him say Birthday, and cake and merry christmas. He knows a birthday is a special day. I think he does know now. Or maybe it just hurts me so that he is all alone.
Daniel is quiet now to me. I put him down and lead him over to the swings and the climbing bars and the slide. He plays for a minute or two on each, but not with his normal energy. He keeps looking over at the kids playing together. And then back at me. I reach into my jacket pocket and get out his meds, and he takes them without a word. I give him half a KitKat bar I have and he nibbles on it, hands and face covered with Chocolate. He stays quiet for a bit, just laying back on the grass, and I lay down with him. His eyes look heavy, like he wants to nap, so i gather him up and we drive home.
We get there and I find a note from my wife. SHe has taken my oldest and gone shopping and they are going to have supper and see a movie if they can.
I get Daniel supper. He picks at it and feeds the dog and watches TV. Then he is up and moving around the house. Kitchen, bathroom, livingroom, batchroom, kitchen, and so on. Everytime I sit, I hear or see him get into something he isnt suspose to. For the next couple of hours I go from place to place behind him, cleaning up whatever he has gotten into, trying to get to the stuff before he does.
Suddenly he turns and growls at me, and I raise my hands up above my head and growl back! "Its a bear! Its a bear, oh no!" he says as he runs into the living room to hide on the sofa, under the blanket. I tear the blanket off and start growling. "Tickle" he says and I do, his back and legs and neck until he is laughing and gasping for breath. He growls back at me, and I let him chase me into the kitchen, then I spin and growl back, and race after him to the sofa again.
We do this until he starts to yawn. He goes over to the shelf and gets a book. This one is a naming book of animals, and we sit together on the chair. He names each animal in the book, and goes thru the pop ups. Book after book we read, him curled up in my lap until my legs are numb from his weight.
Then he is up again, no longer interested in reading, but off to ride his horse or play with his toys. I sit on the floor for a bit and try to roll his truck to him. He jabbers and walks off with the truck, or rolls it off to the corner.
I start feeling myself getting furstrated, as he pulls the video from the shelf, all 40 of them, for the fifth time today, as I pick up the food he dumped and didnt eat. As I run around after him as he gets into everything, tossing the pillows from the sofa onto the floor, back to the tapes, over to try and get into the bathroom. Over and over again.
Not to long after, I get to the point where I want to sit. I call him over and he picks a movie to watch. It is a Ronald McDonald cartoon, one of his favorites. I put it on and I sit to try and surf the web and do some email, and maybe look at eBay a bit. I dont try and play Diablo or MechWarrior 4 or Everquest, because i know what is going to happen in a few minutes. And it does. The movies comes to a scary part, and Daniel yells "Scaree, Scaree, hurry hurry" and runs to hide behind me, or climbs onto my lap. Then he goes and sits and watchs a few more minute, and repeats it all over again.
Next he watchs a short Bear in the big blue house, and I actually get to reply to a couple of emails. The break is nice, except I have to keep getting up to check on him.
I give him his evening meds, and then he starts to yawn. I get him ready for bed, fresh jammies and diaper, then let him watch the rest of his show. By the time it is over, his eyes are barely open. I leave him downstairs and go put his bed back together and get his sippy cup. I go back down and fill his cup and get him a small snack. He nibbles and then I pick him up and take him upstairs to his room.
He lays down on the bed and puts his arm around my neck as I bend over to kiss him goodnight, and leaves it there, so I lay down beside him. Soon his eyes are closed, but his arm hasn't relaxed at all. I wait for a bit more until I am sure he is out, then I quietly get up and check his window bars, and close the safty gate and the door behind me.
I go downstairs and spend about an hour cleaning up after him, and picking up. Then I hear the pounding, softly at first then louder. Having napped, he is awake again. He likes to hear the sound it makes when he kicks the wall. Thud, thud, thud. I yell up for him to go to sleep and he quiets for a bit, maybe 4 or 5 minutes then starts again. Sometimes he goes right back to sleep, sometimes he pounds for hours. But soon it tapers off. When it gets quiet again, I watch a movie or maybe play a game for a bit. I am tired. And I am sad. I go check on him, to be sure he is breathing. I do this several times a night, now that he is not on the heart/lung monitor at night anymore.
I go check on him again, and quietly pick up his stuffed animals, and put the covers over him again. He shuffles a bit and reach out for my in his sleep and I sit on the floor next to the bed and let him hold my hand.
Sadness steals over me, and it is so heavy at times. Daniel is truly a happy kid. He loves to cuddle, he loves to play, he loves life. Yet he has more against him then most. I know tomorrow will be very much like today was. I know it isn't his fault, and I know that we can do nothing about it. I know that there is a good chance that he will always be "two" mentally. His doctors says there is a good chance of it. I also know that he does understand things, the he is aware.
Daniel had a massive seizue at 11 months. It stopped all heart and breathing functions. He was in ICU for a week. His mental abilities peaked at about 18-24 months, and ave not changed much. He has PDD, Prevasive Devolopemental Disorder, a form of Autisum. He is now almost 5.
I tear inside time and time again. He is such a loving kid, and happy, yet he is always singled out, there is always somebody ready and happy to be mean to him because they can be. When he gets hurt, he can't tell you how or where or who. He has no fear. He will step right out an open window, no matter how high up it is. No matter where he goes, there is always someone ready to push him down, someone ready to tease him. I don't know how to prepare him for life like that. I don't know how to protect him from the meaness, the thoughtlessness of people. The cruelity that comes from being different.
He hasnt got a mean bones in his body, yet we have gone thru daycare after daycare, because his is to much to handle. No one wants to babysit him. He goes from place to place, and he gets rejected and turned away, and I don't know what to do about that either.
But at the end of the day I realize it's just a day with Daniel."