Life in Flux

Steven quit his job. Braeden is being tested for the gifted program. Malachai is being tested by the school district for placement next year when he starts kindergarten due to his ADHD. Jenna's boyfriend will be home from the Army in less than 2 weeks and then they will be working towards moving into an apartment together.

I am just trying to stay level and calm through all of the changes and the roller coaster ride of my emotions.

I am still grieving every day.

It's times like these that I really want my Mother. To talk to. To vent to. To tell me that everything will be alright.

It isn't really getting easier. I think I am just getting numb. Like when you hit the same spot over and over it eventually stops hurting so much. You scar. Is that what people mean when they say it gets easier? They also say time heals all wounds. But I can't picture this one healing.

Life goes on. That one I agree with. And I go on with it. Every day I act like everything is fine. I laugh at jokes, I listen to other people's problems, I take care of my children and try to take care of my man. I clean my house (sometimes).

And every day I try not to cry. I try not to holler and scream and throw things. Every day I wonder why I had to lose my Mom and I wish like hell I still had her here. Every day I remember something else that I wish I had said to her, that I wish I had done with her, that I wish I had done FOR her.

I am still grieving. And I try to just get through each day.

Light It Up Blue

You may notice that the blog is blue. It will be so from now until the end of April. We are lighting it up blue to raise autism awareness! Below is a letter that I will be mailing to the President and First Lady this week.  I wanted to share this here in the hopes that some of you, my faithful readers and dear friends, will also Light It Up Blue for Autism Awareness on April 2nd. Feel free to leave your lights blue for the entire month of April. Braeden loved the blue light so much last year that we never took it down at our house. He knows the light is there for him! Also, please feel free to wear blue on April 2nd. Share with everyone why you are doing so if they ask. Feel free to share a picture of your front porch with blue light on your blogs or on Facebook. And then direct anyone who asks about it to the Light It Up Blue website for more information. Or direct them here to ask questions. I am always willing to answer legitimate questions about autism and the spectrum. And about what it is like raising an autistic son. 

March 11, 2012

Barack and Michelle Obama

President and First Lady of the United States of America

The White House
1600 Pennsylvania Avenue NW
Washington, DC 20500

Dear Mr and Mrs Obama,

I am addressing this letter to you directly rather than by title for a reason. Speaking to the President and First Lady there are numerous issues I could choose to discuss. I am a woman, so women’s rights and reproductive freedom are on my mind quite a bit lately. I am a bisexual so LGBT rights also mean a lot to me.  And of course there is always the economy.  But your time is precious and I am hoping my letter will not get shuffled in among the many others I am sure you receive daily. 

I am addressing this letter to you personally because I want to speak with you as one parent to another. You have two beautiful, intelligent and incredibly poised daughters. I am sure you are very proud of them and would do just about anything to make sure they grow up healthy and safe. As a Mother, I would also go to the line for my children. 

I have three beautiful children. I am writing to you today regarding one of them in particular.  His name is Braeden and that is his picture at the top of the letter. Braeden was diagnosed with autism in April of 2010 at the age of 4 1/2. This was no great surprise to us, it just took several years to get a doctor to listen to us and actually do an evaluation. While Braeden is on the high functioning end of the spectrum, he does have challenges every day. Therapy and intensive work have paid off in numerous ways. We are blessed to have this wonderful child. He makes every day special. 

I know you must be aware of the growing number of children being diagnosed with an ASD. 1 in 110 children is diagnosed as falling somewhere on the spectrum. Boys are four times as likely to be diagnosed.  As parents, this should scare you. It scares me. It scares me when I think of the fact that in a little more than 11 years my son will be an adult. He will be wanting to spread his wings and fly.  And the world is not ready for our children.  The world, and America, are not knowledgable about what autism is, how it affects those who are diagnosed and how they should be treated. The cruelty and ignorance that my child has faced and will face make me furious. 

April 2nd, as you know, is World Autism Awareness Day.  And the entire month of April is Autism Awareness Month.  This will be the third annual Light It Up Blue for Autism day this year.  We, as parents, hope that by changing our porch lights to a blue light we can help to bring awareness to our communities. We hope that someone will stop and ask us why the light is blue so that we can talk to them.  Initiating conversations, opening a dialogue, raising awareness and showing the world how dedicated we are to helping our children are all goals of this day. 

This year more than 350 public buildings have already committed to lighting up blue. These building and landmarks include Rockefeller Center, Top of the Rock Observation Deck and Madison Square Garden in New York City, Hôtel de Ville in Paris, France, the famous Tokyo Tower in Japan and Canada’s CN Tower, the Sydney Opera House in Australia and Michigan’s Mackinac Bridge. Parents across the globe are speaking with their local government officials, business owners, family and friends to request that they also Light it up Blue. In 2011 there were more than 2000 buildings and landmarks turned blue for AT LEAST the day. 

I am asking you, from one parent to another, what wouldn’t you do for your children? What if one of your girls was autistic? Think long and hard about the challenges faced by the parents of children with an ASD. Think about the adults and teenagers with an ASD who are watching the world to see who supports them. The special needs community is huge and growing every day. We are watching the world to see what changes can be made and who is willing to institute them. http://www.lightitupblue.org/Markslist/home.do has more information on the Light It Up Blue initiative.

I am asking you, as a parent, to consider lighting up your house blue on April 2, 2012. Light up the White House and make it blue for just one day. Light up the Washington Memorial, light up the numerous memorials, public buildings and facilities. Please show our children and our community that you care about us. Show the world that this community is not forgotten and is not second class.

I wish you both the best of luck and a happy healthy election year.

Sincerely yours,

Tracy DeLuca

faeriecastle@yahoo.com

Heartbroken

Any of my readers who are also friends with me on Facecrack already know that my Mother passed away. She was always after me to write in this blog more often. So, in memory of her and to help me work through my grief and get my life back on track  here it goes....

Sandra Lee Basel White

February 14, 1945 - December 29, 2011

A friend of my Mom's read the following at her Memorial Mass: 

Good morning. I am Patti T***r and I have had the privilege of working with Sandy the past 27 years. But I am not here just as a co-worker, because Sandy was so much more than that to me. When her family asked me to speak today, I started thinking of what Sandy would want to me tell you. 

The word FAMILY kept coming into my head. I think the most important thing to Sandy was FAMILY
•not just her natural family – her mother, sisters, children, and grandchildren
•but also her spiritual family here at this church which she loved
•her family at Curves who helped her stay physically active
•and her family at Waldo Community School of coworkers, students, parents, and grandparents.

Many of you know me and know that I come from a very small family, of which I am the only one left. Sandy and I had known each other for 11 years when my mother died, and I became a family of 1. Sandy never tried to “be my mom” at that time, but she definitely adopted me into her family. 
•She would invite me to family gatherings at times she knew it would be difficult for me to be alone. 
•She would let me moan, groan, and complain - and later forget I ever said anything.

•She would irritate me, I think sometimes on purpose - just so we could laugh about it later.
•She was always patient with me when I needed some distance, and she was loving when I needed a slap up side the head.
•She would remember my birthday and ALWAYS sing “Happy Birthday” to me.
•She would celebrate my successes and mourn my losses as if I was her daughter.

And that’s what family does
•they make you feel wanted,
•they comfort you,
•they make you laugh, 
•they make you cry, 
•they frustrate you, 
•they correct you, 
•they are patient with you, 
•they embrace you, 
•they just love you. 

Sandy was family – She truly comforted, corrected, embraced, and loved everyone in her many families. 

Some of my students drew pictures and wrote letters which I gave to the family on Wednesday. One young man was absent Wednesday, so he gave me his card late. He drew a picture of a heart with a circle in the middle.  When I first looked at it, I saw a hole – a place in all of our hearts where we miss Sandy. 

This morning when I looked at it, I saw it completely differently. I see it as a little piece of Sandy living our hearts. I believe Sandy will always be with us. And I think Sandy would want everyone to remember to look for those people we can embrace into our families as she did. And then love them as Sandy loved us.

What Patti wrote really speaks volumes about the type of woman my Mother was. She loved everyone. You can read a little but about her life HERE where I wrote about her before.


I am devestated. I feel as if a part of me is missing and it hurts tremendously. Every day I struggle to go through the motions, to get back to where I need to be with my life and my home. And every day I feel as if I am failing.


And then I remind myself that it has only been a month since I lost one of the most important and possibly the most influential person in my life. The pain will continue for a long time. I have to learn to embrace it and then move onward and upward each day. And eventually it will get easier. It's hard to believe that right now.


I tried to find a song to post that was one of her favorites. It sucked. I cried. I tried to find a song to describe how I am feeling. It sucked. I cried. I tried to write something that actually had some depth and used correct punctuation and grammar and expressed how I am feeling. It sucked. I cried.


And that's how life is going for me right now.

Menu Schmenu

Menu planning is driving me crazy. I want to do it, but it just slips away from me. Then I spend half of my day each day trying to figure out dinner. It sucks. So here is this weeks plan and maybe I will actually stick to it! And I am listing here the foods that I know the boys will eat for dinner so I can, maybe, plan them a menu. *sigh*


Tuesday - Candied Chicken (from the freezer) with rice and broccoli
Wednesday- Pot Roast with carrots, potatoes and onions (maybe in the slow cooker) and fresh bread from the bread machine.
Thursday - Pizza night?
Friday - Pork chop and hash brown casserole from freezer.  Experimental recipe so we will see if it is any good. If it sucks too bad it's grilled cheese and soup night!
Saturday - Leftovers/ Fend for yourself
Sunday - Mexican casserole/ Navajo taco bake (will link the recipe if I can find it)



Some baking I want to get done this week:

BrownSugar Cinnamon Muffins
Waffles
Several breads in the bread machine. No ideas what kind yet.
COOKIES!!


Foods the boys will eat for dinner:
Frozen cheese pizza
cheese ravioli, no sauce
green peas
corn on the cob
pasta with cheese
chicken nuggets
mac & cheese
nutella or pb&j sandwiches
grilled cheese
fruit (apple slices, pineapple)
ramen noodles
waffles
pancakes
oatmeal
grits


For more, and probably much better planned, menus, head over to Menu Plan Monday at OrgJunkie!

Explaining the Unexplainable

Braeden 2010 

 Beautiful. Funny. Silly. Smart. Loving. Cuddly. Strong. .... Autistic. 

It's part of who he is. Just one part. One part that impacts every other part of his life. When you look at him.... you don't see it. When you talk to him, interact with him, you start to wonder. You may feel a little uncomfortable when he runs up to you and hugs you without even knowing who you are. When he gets right in your face to talk to you. When you can't understand what he is trying to tell you. When he stutters and trips over his words. And then struggles to find the right word that is in his little brain and just won't come out. When he spends the time you are at my home visiting hiding in his room or lining up his cars because he just had a stressful day and can't deal with any more. When he gets angry and shouts and throws toys because his frustration level is just too high and he has no way to release it. When he asks to jump because he needs to be quiet. When he cries over something that would make another child laugh. When he tries to interact with your child and gets frustrated when they don't do what he wants them to. When he tells you what You should be saying or doing because in his mind... that's the way it should be. When you realize that at 6 years old... we still have problems with potty training. When he won't eat what you fixed him for lunch because it has sauce on it. Or the food is touching. Or he doesn't like food that is too hot. Or too cold. Or too.... anything. When he begins to twirl in the grocery store. Or pretends to be a cat in the middle of Wally World... complete with rubbing on your legs and meowing. When he gets scared of the loud intercom, the loud siren or the loud insects. When he cries because the music is too loud. When he throws his toys around the room and breaks them because he can't decide what to play with. Or because they are too bright. Or too noisy. Or for some reason that I just can't figure out. When you see me on Facebook at 3 am because he is still awake and we are worried about leaving him up without supervision but nothing is working to get him to just.... go to sleep. When he runs away from me in a parking lot. In my yard. At the store. In the library. When he screams because he just can't figure out what else to do.

When you look at him, you can't really tell that he is autistic. That he has autism. That he has a disability that will be with him for the rest of his life. And so you think maybe he is just.... spoiled. Or being naughty. Or maybe he is retarded. His parents just need to spank him, teach him right from wrong, control him.... You think his behavior is a choice on his part. But it's not. Or, to be honest, not always. He is still a little boys and sometimes he has typical little boy issues. But most of the time.... he can't control the emotions. He can't stop the behavior. He doesn't understand that he is acting in a socially unacceptable way. 

But he sees the way you look at him. He feels the stares. He hears the whispers. He hears you when you walk up to his parents and say "Why don't you control that little boy? He needs a good spanking!". He hears and he knows but he doesn't know why. And we are left to try to explain the unexplainable. 

Autism is cruel. Humanity has the ability to be crueler. 

Autism is not the tradgedy. Ignorance is the tradgedy. 

PLEASE. Please. Please. If you see a child misbehaving, try not to stare. Try not to be judgmental. You don't know what the parents are going through. You don't know why the child is behaving the way he is. 

PLEASE help to raise awareness of autism. 1 in 110 children is diagnosed with autism. Boys are 4 times more likely to be diagnosed than girls. These numbers are growing every day. Autism is not curable. But it is treatable. Therapy can help. Understanding can help. 

My son is very special. He is an incredible little boy. One day, I expect to watch him graduate from high school. If he chooses, I expect to see him graduate college. I hope one day that he will live in his own home. I hope he is able to find a partner in this life, to love him and understand him.

Until then.... I'm here.