Monday, March 29, 2010

Thank God for Macaroni

On Saturday, we had macaroni and cheese for lunch.


I would be the first to admit that I haven’t been a good parent when it comes to getting my kids to church. Saturday my wife and I took the kids to a Catholic church. This would be the first time my children had attended a Catholic mass.

Kaylie asked my wife why people were dipping their hands in water and ‘rubbing’ it on their forehead.

We were sitting towards the back and Kendra asks me what that big box is for (the confessional) and I tell her that’s where people go to say all of the naughty things they have done.

She looks at me with those wide blue eyes and says, “Are you serious?”

Because Sunday was Palm Sunday the church handed out palm leaves and of course the kids asked what they were for. I explained the story to them but I told them it was when Jesus was going to Galilee on a donkey (not sure if it was Galilee or not). Other people held their palm leave throughout the service, my kids shredded them into little strips.

Ethan leans over to me and says, “Jeez dad, we almost take up a whole row.” He was right, two adults and five kids DO almost take up a whole row.

Kendra asked me why people were sitting with their eyes closed and I told her they were praying. I then tried to explain that this is where people talk to God. I encouraged her to try it. She wasn’t sure what she should say so I told her to say thank you for some things. Kendra leans over to me and whispers, “Can I thank God for the macaroni?” Smiling, I tell her that would be fine. She also thanked God for ‘church’.

At the Catholic Church, before going into a pew, people genuflect or go down on one knee. Landen asks me why those people are ‘squatting’.

I was explaining to the three older kids that people will make the sign of the cross at different times throughout the service. It was kind of humorous to see an 11, 12, and an 8 year old practicing, making sure they did it right.

We made it through the service without any meltdowns or crying spells (and the kids did pretty good as well).

As we were walking out of the church, I see Landen rolling on his heli’s (shoes with wheels in them) and I think how lucky I am to have such honest kids.

Thursday, March 18, 2010

Another short story

He stood waiting in line to have his luggage checked by security. He could feel the perspiration forming on is forehead. As it began to run down his face he wiped it away with the sleeve of his shirt. He didn’t exactly feel warm, he thought it was maybe just nerves. He made it through security without any problems and he smiled to himself knowing he fooled the security guards. As he boarded the plane, he greeted people as he normally would. His training emphasized to him that if you appear friendly you are less likely to be seen as suspicious. He took his seat in an aisle seat by the wing. He was supposed to have the window seat by the wing but he reasons that it probably doesn’t matter as he has seen a bomb similar to the one strapped to the back of his leg blow up a school bus.


He is hoping no one will be sitting in the other two seats next to him. One thing he hated about air travel is being forced to sit in a small space next to people he didn’t know. “This trip, I guess it doesn’t matter,” he thought to himself. He began to grow impatient as the plane was supposed to have taken off already. There were still plenty of open seats. He tells himself to stay calm as if he has a meltdown now, he won’t succeed in his mission. He breathes a sigh of relief when he hears the plane’s engine revving. It should only be another few minutes before they are in the air. Just as the stewardess is about to shut the door, a mother and her small daughter board the plane. He thinks to himself, “With my luck, I will have to sit by that brat.” He has come to dislike children. They are full of snot and don’t adhere to boundaries, they ask a lot of questions, never listen to their parents. This time it won’t matter as she will be dead like the rest of the passengers.

As luck would have it, she takes her seat right next to him with her mother sitting by the window. He watches the mother out of the corner of his eye fasten the brat’s seatbelt. He notices how she pulls on the seat belt to make sure it is fastened. This reminds him of a trip he took with his wife and daughter two years ago and how his wife checked the seat belt the same way. In many ways his life was less complicated then. He will be the first to tell you that he was never a great father. People always told him how much his daughter looked up to him. He failed to see this. It was probably more like he didn’t want to see this.

This trip was three months before he left them. He has been training for this mission for the last year. He has no regrets about the choice he made. He is not even sure where his wife and child are living and quite frankly, he doesn’t care as his dedication to his mission over rides everything, all attachments, all emotions, and all feelings.

He is nearly asleep when he feels a slight tug on his shirt, “Do you want some?” the little girl says while holding a small bag of fruit snacks in his face. He isn’t sure why but he said ‘sure’ and she told him to hold out his hand so she could pour some. She told him the Dora ones were her favorite but the Sponge bob ones were good to. He noticed she poured nearly the whole bag into his hand, “That’s too much” she says and takes all of them out of his hand but one. She notices that the one in his hand was Sponge bob and takes that as well but replaces it with a Patrick.

He hopes that she will be quiet after this. As she replaces the sponge bob with the Patrick, he notices how small her hands are compared to his. Her little fingers touch the palms of his hand. He remembers holding his daughters hand while they walked to the park. He never understood why his daughter always had to hold his hand every place they went. It drove him crazy. He remembers this day, it was July and when they arrived at the park the scent of grilled hamburgers permeated the air, he could smell the lake, and he feels the wind in his face. He didn’t want to be here. He hates the chaos of life, he hates the chaos of the park.

“We are going to see my daddy,” she says to him which brings him back from the park. He doesn’t have a chance to say anything before she says, “He has been in A-Rock. My mommy says he is a hero.”

“Do you have any kids?” she asks him. The way she asked the question reminded him of how his daughter used to ask him questions.

“No. My family is dead,” he says without any emotion in his voice. He is obviously lying but during his training he learned to consider them dead. Further, he was taught to deny weaknesses. Family equals emotions and emotions equal weaknesses.

He remembers the day he left his family. The day his wife and daughter became dead to him. He hadn’t been at home for almost a year. He walked into his home and thought how much it didn’t feel like home anymore. His wife is crying begging for him to hold her. He stands in front of her not looking at her, not touching her even though her face is buried in his chest.

“You are dead to me,” he says just as he was taught. She looks into his eyes and doesn’t see a soul, does not see the man she married. As he walks out the front door he hears a loud, “Daddy! I knew you would come back to us.” He coldly tells her that he has to go away for a long time and she will never see him again. “No daddy, don’t go stay with us. We can go to the park, daddy. Please daddy, don’t go, I will be a good girl, I promise daddy. I will pick up my toys and I will do good in school. Don’t go daddy.” He says nothing. She runs after him and grabs onto his leg.

“Let go.”

“Daddy, I love you.”

He aggressively peels her from his leg, pushes her away and tells her to go in the house.

“How did they die?” she says to him, looking him directly in the eye. He hadn’t really noticed her face yet but the look of sadness in her bright blue eyes overcame him. Before he could say that he didn’t want to talk about it her mother told her that wasn’t a very nice thing to say.

“I was hoping you had a little girl so I could play with her,” she says as she faces forward burying her face in her sponge bob stuffed toy. “At daycare, no kids play with me.” He could tell by the reflection in her voice that she is almost ready to cry. He wonders for a brief second if the kids at his daughter’s day care play with her.

The dinner cart brought him his food. Crab salad sandwich for his last meal. He wonders why prisoners get to choose their last meal and he gets crab salad. He notices the little girl eating her macaroni and cheese with an extra small fork. “Do you want some?” she says and before he can answer she says pointing to his sandwich, “What is that, yuck! It smells like poop.” This made the both of them him laugh out loud. He noticed her smile and the sparkle in her eyes. He had forgotten what it felt like to laugh.

He spent more time watching her out of the corner of his eye. Her straight blonde hair just past her shoulders. She was wearing a white dress and brown sandals. Her legs were barely longer then the seat she was sitting on and he noticed how her feet dangled off of the end of her seat. Her Dora backpack sat on the floor under her feet and she would frequently touch her foot to the backpack to “Make sure it was still there” she told him. Her toenails were painted a bright red. She saw him looking at her feet she says, “I painted them all by myself” she leans into him and whispers, “Mommy helped.” He couldn’t help but smile.

He whispers back, “I won’t tell anyone.” He realized this was the most words he had said to her.

He pretended to look out the window but was actually trying to see if the little girl looked like her mother. He could not see any resemblance so he figured she must look like her father.

The plane began making the final descent to San Francisco. He was supposed to detonate the bomb when they flew over the San Francisco Bridge. Perspiration began to run down his face and he suddenly felt sick. He got up to use the bathroom and as he shut the door he thought how much he hated the size of these bathrooms. He threw up his crab sandwich into the toilet. He felt dizzy and almost collapsed face first. He tried to remember his training, how he was supposed to deal with the anxiety prior to the event. He is drawing a blank, he can’t remember anything. As he was trying to compose himself he saw in his mind his daughter and the little girl swinging on the swings at a park. He was sitting on a picnic table watching them and smiling.

As he returned to his seat he noticed she had a camera, the kind that shoots out the picture right after a person takes it. “Mommy, take our picture,” she says and before he has a chance to say ‘no’ she leans into him and the mother snaps the picture and hands it to the little girl. She watches it develop and shows it to him when it is finished.

“Do I look pretty?” she says.

“Yes you do,” he says to her

The plane has been gradually descending for the last fifteen minutes. He leans over to look out the window and can see the bridge approaching. He reaches down to the back of his leg and feels the bulge that is the bomb. The napkin he used to wipe his face off looked like it was held under a water faucet. He touches the trigger for the bomb, one push of the arming mechanism is all he needs to do and his mission will be a success.

“Here,” she says, handing him the picture, “You can have this. My mommy says to share things with my friends.” She looks up at him with those big blue eyes and says, “Are we friends?”

“Yes, we are friends.” Knowing at this point he would not be able to complete his mission. Also knowing he would be considered an outlaw in his organization. If they found him they would kill him.

“My name is Kendra” she says.

“My name is Richard.”

As the plane comes to a halt on the runway and people are getting ready to leave the plane he tells her, “Kendra, I do have a little girl but I haven’t seen her in a long time. When I think about her I get really sad. I would like it if someday you and she could play together at a park.” She smiles from ear to ear and the memory of that moment will forever be burned into his brain.

He pulled his baseball hat over his head to cover his face as the organization has ‘people’ all over. He quickly rented a car with an organizational credit card. He drove to a pier and stopped the car and put the gear in park. He holds the picture in his hand looking at it, a single tear runs down his face.

When Kendra sees her dad, she runs up to him with open arms yelling, "Daddy!".  Her father picks her up and holds her close to him.  He didn't realize how much she had grown in the time he was gone.  Kendra tells her father about her friend Richard she met on the plane and how crabby he was at first but they are best friends now.  "He has a little girl daddy and some day Richard said we could play together."



When the fire department put out the fire they noticed the charred body inside of the destroyed car. After what seemed like an eternity, the ambulance removed the body. As they loaded the body onto the stretcher, a paramedic saw something in his hand. The paramedic looked closer and the only part of the picture that wasn’t burned was a little girl with blonde hair, a white dress, and sparkly blue eyes.

Wednesday, March 17, 2010

A History Lesson

LBSA was giving away some books that have been in their library for a very long time. The other day I saw a book titled “Residential Facilities for the Mentally Retarded”. By the looks of it and by the title I assumed it was a rather old book, I checked and it was published in 1970. I grabbed it thinking that in my spare time I’d like to read through it to see how opinions and beliefs had changed over the years. For those of you that were around in 1970 (I was born in 1972), I’m sure you would agree that many of the philosophies and practices relating to people with developmental disabilities is different. If this book were to be published today, I highly doubt it would have this title. Much of what I will put in the blog will be direct quotes from the book. Any commentary I add inside of a quote will be in ().


“Deviance, of course has existed since the beginning of human history…There must have always been some people who were noticeably less adequate than others. The Greeks called them idiots (which was probably the politically correct term back then) and the Romans labeled them morons.”

“Even today we emphasize how the retarded are different, not how they are similar.” Is the author serious? I read this sentence several times and I have to tell myself that this was 1970. If we look at all of the things we are supposed to be doing as an agency i.e. active treatment and normalization then we will probably find this statement to be completely false. When I think of the people that live on campus, I don’t identify them as developmentally disabled people, I think of them as people who just so happen to have developmental disabilities. I don’t give our clients ‘special’ treatment, I treat them just as I do anyone else.

When I tell people what I do for a living sometimes they say, “it takes a special kind of person to do that kind of work.” I then usually ask if they have ever worked in the field. If they say they haven’t I tell them that our clients are just people who have their struggles just as we all do but they may need more help in some areas. Don’t get me wrong, it does take a special kind of person to work in this field, in fact I’ve always said that a great direct care staff is worth their weight in gold, but it bothers me when someone who has had no exposure to people with developmental disabilities just assumes people with disabilities are treated the same as they were 50 years ago.

In reference to an early researcher in the field of developmental disabilities the author says, “The objective of Seguin’s training regimen was to establish contact with the environment, first by systematically training the senses and muscles. Then he worked the child through an orderly progression from simple to complex activities, from concrete to abstract notions, and from instinctual to moral control. The theory was that the nervous system, awakened and developed, would bring behavior under control of the will and, consequently, of the moral world.” I can’t say that I necessarily disagree with his approach. While I don’t know if we think of what we do in these terms but I think of BSP’s and occupational therapy is geared towards some of these same ideas. What the author fails to mention is each client needs to have things individualized to their needs. We can’t take one approach and expect it to work with all of our clients.

“Charles Davenport, one of the first American proponents of eugenics described it as “. . . the science of the improvement of the human race by better breeding. The fundamental idea is an appealingly simple one: to create a better breed of people, those with desirable traits are encouraged to propagate. Those with undesirable traits should not propagate. Because the mental defective possesses undesirable traits he should not reproduce.”” While the subject of sexuality and people with disabilities can be a touchy subject, when I read what the author wrote, I was wondering if Adolf Hitler had similar thoughts when he had millions and millions of Jewish people killed. Many states passed sterilization laws as a result of this idea. “By 1926 . . . 23 states. When voluntary sterilization for the retarded becomes part of the culture of the United States, we should expect a decrease of about 50 percent generation in the number of persons as a result of all methods combined to reduce mental retardation.”

I’m glad I live and work in 2010.

Wednesday, March 3, 2010

A Day in the Life.....

Tuesday’s are always stressful as I get to work late and have to leave early. Yesterday I left at 2:55 but when I got about a block away from LBSA, I realized I forgot my cell phone. I wish I wasn’t so dependent on the darn thing so I could have continued on my way home, but I couldn’t so I had to come back to work and retrieve it.


When I arrived home I was opening up the garage door and my wife passes by me and gives me the relevant information regarding our baby, who has a bad cold. We say good bye to each other and she leaves. I quickly shut the garage door as I can already hear Ivy ‘squawking’. Hurriedly I then take the garbage can to the curb as I know if I don’t do it now, I will forget to do it later.

I enter my house and greet my five year old daughter who always runs up to me and gives me a hug. Kendra has a cold but it isn’t as bad as Ivy’s. I sit down on the couch next to Ivy and pick her up. I can tell she just wants to sleep but she can’t. As I’m trying to figure out what I can do for her, the other kids are arguing over who is going to play playstation first. Once that is settled, I send Jody a text message asking when Ivy needs a nebulizer treatment next. Jody informed me that at 4:30.

At 4:30 I give Ivy her nebulizer treatment which settles her down enough to go to sleep. However, the other kids are being way to loud so Ivy is unable to. I’m worried as she hasn’t eaten much all day and attempts to give her some water have been in vain.

Between 4:30 and 5 I get four different children asking me what we are having for supper. I cheerfully answer ‘tuna sandwiches’. On nights when there is just one parent, we usually have easy meals.

Ivy is at the age where she needs to see Jody or I at all times. As I begin to make the sandwiches, I bring Ivy into the dining room and play music on my computer for her to try to get her relaxed. She loves music and I have found that John Denver’s greatest hits works best. Kendra asks for a cough drop and the only ones I saw were Hall’s. I ask Ken if these are the ones that mommy gave her earlier and her reply is no. I call Jody and get the location of the correct cough drops.

When we finally sit down to eat and I put Ivy in her high chair, I’m ready for a nap! Ivy doesn’t want to eat the jelly bread nor does she want to eat applesauce, two of her favorites. When I start to eat, I notice my son is basically finished eating but he sticks around the table and continues talking with us.

Landen reluctantly agrees to do the dishes, which is a big help to me. I need to have a smoke so I ask Kaylie to talk to Ivy while I do this.

For some reason, after supper the other kids seem to engage in non-stop arguing. I usually have to play referee. Although there are some days, I’d like to go into the garage and shut the door and come back inside when things are calm.

It is now about 6 pm and Ivy is extremely tired so I take her to her crib, located in my room and lay her down. She tosses and turns for a few minutes before she falls asleep. I see an opportunity for myself to take a ten minute cat nap. I lay my head down on my pillow and about four minutes later, Kaylie comes upstairs and needs something. I make sure the baby monitor is on and help Kaylie. I then go back downstairs and finish cleaning up the kitchen. I look at the clock and see that it is 6:30 pm. Only another hour and a half, I thought, until the cavalry is home.

I needed to make up some work time for today so I then spent 45 minutes reading t-logs and working on a presentation for my management group. I had to cut it short as I Ivy wakes up. I tried giving Ivy some formula and she drank about an ounce and a half. I was almost excited (even though she usually drinks about 6) but I was very worried about her at the same time.

I feel Ivy’s forehead and she feels warm. Her temp is 100. I send my wife a text asking if she is going to get motrin on her way home. I’m now worried that Ivy’s temp is going to go higher and higher. I take it a few minutes later and it is down to 98. I can never get an accurate reading. However, she still feels warm. I remove her pajamas hoping that will keep her cool.

I send Kaylie to the shower and change Ivy’s diaper. It isn’t very heavy so I’m worried she is getting dehydrated. I hear Kaylie call for me (we have to make sure her hair has all of the conditioner rinsed out).

I hear Kendra coughing and get her another cough drop.

Every Tuesday night, TBS has a three hours of the show The Office. I sit on the floor of my living room with Ivy cradled in my arms and tune in for a few minutes. At this point I’m tired, I’m exhausted and I’m a little crabby. I’m really ready for the Cavalry to arrive. The boys are listening to an Eminem song on you tube and tell them to turn if off. A few minutes later I hear four of my kids standing around the computer singing, and I’m not sure if the title and artist is correct, Fireflies by Owl something or other. Here I sit with my sick baby in my arms, listening to four angelic voices coming from the other room and I think how lucky I am.

At 8 pm I ask the girls to get a snack. Kendra chooses goldfish crackers. I’m not kidding it takes her FOR-EVER to eat a snack. Kaylie will eat a snack and brush her teeth without me having to ‘prompt’ her. When Kendra finishes, her brother is already in the shower so I tell Ken that she will have to skip brushing her teeth. I then get Ivy’s nebulizer set up and turn it on and I ask Ethan to hold it close to Ivy’s face while I put the other girls to bed.

By the time I finish the nebulizer treatment, about 9, Jody walks through the door. The boys give her hugs and they are sent off to bed. Jody and I are talking on the couch and I hear the boys arguing upstairs and I tell them to knock it off and go to sleep. I then realize that we have some movies that need to be returned so I get in my truck and return them. Upon returning home Jody and I watch another episode of The Office before we go to bed.

I sometimes suffer from insomnia and it takes a lot of effort for me to go to sleep. I also think I have restless leg syndrome so if it isn’t insomnia, my feet are driving me mad. Ivy is sleeping and I lay watching tv for a bit. Knowing I have to get up at 5:30 am the next morning I shut the tv off and try to go to sleep. I can feel myself drifting off when Ivy begins to ‘squawk’ again. I will now be awake for another two hours for sure. This happened an additional two times throughout the night. Although one of the times she woke up, I got her to smile.

I think I finally fell asleep between 2:30 and 3. Today, I am extremely tired and a little cranky. But you know, I got to hear my kids singing (and get along for 3 minutes) and I got to see my baby smile at 2 am.

It was a good day.