The Man Who Supports Me

I've known my husband for 10 years. For 10 years he has been my best friend,  my partner,  my lover,  the father to my children.  He has supported me through every adventure I've taken. When Liz was diagnosed with autism,  it was Colby who sat with me. I felt isolated, and he was the only other person in the world who knew my pain.
I feel as if we have lived 1000 lives over the past 10 years. We have moved at least 6 times, lived in 3 states, brought 3 beautiful children into this world, and been through more trials than most people encounter in a lifetime. 
I know that this man is the man for me. He loves me, treats me like a queen, and makes sure that I have everything I need. He supports me in all of my advocacy work and even goes with me to protests. He listens to my political ramblings.
Most of all, this man is an amazing father to our children.  He loves them. He plays with them. He is patient.  I know that he is the best father for my children.
Happy Father's Day, Colby.  You are forever my hero.

Autism Awareness Month 2015

Dear Lizzybug,

You are a smart and active 6 year old. You love to sing and dance. You love to play with your cousins. You love jumping on the trampoline. I could go on and on about the things that you love. You're just like any other 6 year old...except that you have autism. 

Most of the time people can not see that you have autism. They usually see an over active girl. Those outside our family fail to see the endless hours of therapy and the shed tears. They do not see how far you have come. They only see a bright active 6 year old girl. It is hard for me, sometimes, to hear people say ,"If you hadn't told me, I would not have known." On one hand, I celebrate that our therapies work, but on the other hand I weep internally that they do not see the struggle we face daily. 

My sweet bug, I fear the day when you realize that you have autism. I try to use it in our every day language, so that one day it is not a earth shattering shock. I do not want you to see your disability as a disability. I want you to see a gift. You see the world differently than I, and because of your autism you have known great challenges. This gift will give you the power to make a difference.

By now, you know that your mother is an activist at heart. As a young child, I discovered CFCs were destroying our ozone. I refused to use aerosol cans or Styrofoam plates. I put up little signs in our yard. From then on, if I discovered a cause that I was passionate for I had to be vocal. I urge you to always be vocal about your passions. Never ever let an opposing opinion defeat you. Hold onto to passions, stand up for yourself and those like you. You see, my bug, you are able to speak unlike some with autism. This gives you a special power to advocate for those who can not. Hold onto that, use it, let the world know. 

This month, April, we have our blue lights up, and we let those around us know about autism. Yet, in our home every single day is Autism Awareness Day. I will do the best I can to advocate for you. I will continue to defend you and your right to education. You changed my world, Bug, and you deserve the best shot at a successful life.

All My Love,

Mommy

60 Miles Of Hope

I have spent the last few days trying to figure how to describe all of the feelings that I have right now. It's so hard to describe how liberated I feel after walking 60 miles for public education. It is absolutely amazing what a small group of people can accomplish together. Every part of my body aches, but I feel absolutely amazing!

Just over a month ago, I woke up and decided that I was going to walk 60 miles with an organization called Game on For Kansas Schools. This is a really good article on the walk. I am fairly certain that Colby thought I was crazy when I told him, but he just went a long with it like he always does. 

I don't want to go into the logistics of the walk. Those can be found in news articles. I want to talk more about how I feel after doing this, and exactly what it means to me. You see, when I began this walk I was doing it for my kids, niece, and nephews. As the walk progressed, I saw how grateful people were for what we were doing. I watched the little town of Desoto, Kansas welcome us. I saw practically the entire town of Eudora turn out, complete with a police escort. As we arrived in Lawrence, Kansas we were greeted by a large mass of people chanting "Fund our schools!" Each and every one of those stops helped me to realize that I was a part of something remarkable, something bigger than myself and my family. I know that what I did, and what the other walkers did meant something to these towns.

You see, the Governor of Kansas and his minions can cut our funding and pass their crooked policies, but they can not take our pride. They can beat on our school doors and take everything they have from them, but that will only make us larger and louder. Why? Because we have more pride and fight in one hair on our head than the governor of Kansas has in his entire body. We will win. It may take 4 years, but I am here to tell you that we will win this battle. It will not be easy, and it will be filled with twists and turns, but I have no doubt that we can do it. I know because I met parents, teachers, school board members,and other community figures who were willing to go through physical pain to fight for the schools of Kansas. 

Teaching Liz to Advocate

Earlier this month, we sat down with Liz's IEP team to discuss next year and draw up her education plan.  One thing that I felt strongly about was teaching Liz to advocate for herself.  I told her team that if she can't learn to do so the entire process was pointless.  It's true though.  She needs to be able to tell someone when she is struggling,  sick, or being bullied.  She needs to speak up for herself. 
Earlier this month,  she made me so proud.  She woke up with a horrible stomach ache. She was screaming in pain and couldn't move. I thought for sure her appendix was rupturing. We rushed her to the hospital.  As the nurse practiconer looked her over,  she introduced herself, and calmly told the NP what was wrong.  As I watched her, I realized that while she has a long way to go, she is starting to realize how to advocate for herself.
As she goes through life, I won't always be there to hold her hand through things. My goal for next school year is to help her learn how to better verbalize her concerns and fears to others.  I'm so grateful to have an IEP team that fully supports us and our goals for Liz (but more on that later).

Sweet and Sassy Presley

Dear Presley,

I noticed you have been having an especially rough time recently. I imagine it is hard to have an older sister with special needs and a baby brother. Far too often you have to wait patiently for their needs to be met before your own You have learned to become flexible. I really can't give you enough praise. You often acts so much older than you really are. For example, a few days ago Liz wanted to do something that she shouldn't.  Daddy and I told Liz repeatedly to not do it. Finally, you looked at us, and said, "Guys, I got this." You walked over to Liz,  calmly explained the situation, and then offered assistance. You are learning to advocate for her sister.  It breaks my heart, but also fills me with pride to see you looking after Liz. Presley, you are truly an amazing child. Your contagious laughter and sweet sassy personality fills our home, and I love every ounce of you. Thank you for being an awesome sister and daughter.
Love Always,
Mommy

Lizzybug is 6!

I can not believe that my sweet girl is six year old. It seems like just yesterday she was a tiny baby. It is hard to believe that we now have 3 kiddos. Of course, Liz had the entire day planned. I brought cupcakes to her school. It was actually pretty fun. When I arrived, her class was dancing so I joined in! After school, she went to a church afterschool program that she loves. Then, Liz went to dance class where she shared cupcakes with her friends there. Her dance teacher was awesome, and she let Liz help lead the class. Liz is still talking about that! We ended the night at McDonald's with her cousins. She is already planning next year's birthday.

Cupcakes at school!

The Person I've Become

Deep thoughts on my Thursday. I've spent the day lazing my p.j.s and nursing a sick child back to health. Days like today give me time to think. I guess you could say this post will be my tell all. I want to talk about where I am in all of this, and the person that I have become.

First and foremost, I feel that I have become an advocate. I have always been passionate about things that are close to my heart. When I latch onto something I grasp it and hold on as tightly as possible. I have learned how to advocate for others. I have learned to advocate for my children. I know that in some ways I am still getting my toes wet. Often times, I have to step back from the situation before I let my temper get the better of me. I am learning.

Secondly, I have found that I have mostly completed the grieving process that comes with a major diagnosis. I still have my days. Things still sting from time to time. I don't know that this is ever something you completely come to terms with. I think I have just learned how to adjust my life and my way of thinking.

I think that I am more compassionate to those in similar situations. The unfortunate side to this is that I am sometimes bitter to people with typically developing  children. I am learning to let things slide. Everything for me seems to be a learning curve.

Next, the hard stuff. Emotionally, I am still sensitive. Random things set me off. I never know when or what it will be. It usually comes at me through the dark. I sometimes cry at night, in bathroom stalls at Walmart, in my car...just wherever it happens. Sometimes it is hard to imagine a life without autism. It's hard to think that I was once of those people who did not know how special needs parents did it. Yet here I am, and autism is  very real thing in my life. Sometimes it is this thing that plagues my child, and other times I can see the beauty in it.

I have found that as far as my social life goes, I tend to keep my circle small. It consists of other special needs mothers. These are people who know what I go through. I do not have to fear their judgment. If I laugh hysterically at nothing or if I cry, they will laugh with me, cry with my, be there for me. They help bring a sense of "normal" to my life.

My mentality....this is something that I have struggled with posting. I see myself as unbelievably strong. I tend to be somewhat prideful about my strength. I have a "suck it up" personality. I do not let things lick me. Over the past few months, I have found that life has caught up with me. I have been in survival mode for so very long. My body just could not keep up anymore. I finally let go of my pride, and saw my doctor about anxiety. So here I am on anxiety meds. I am not sure how I feel about it. I struggle with the fact that I have had t resort to medication. I know that is a ridiculous mind set that I need to get over. There is nothing wrong with being on medication. My pride has taken a small beating. I will say that I have seen vast improvement with the medication, and I am beginning to feel like myself again. Many people close to me do not even know this. So surprise to all those who have no clue! As always I am an amazing actress.

So there you have my tell all. This I where I am. This is me right now, and I am learning to be okay with that.

Standing For Something

On February 13, 2015,  the little town of Holton, Kansas received a visit from Governor Brownback. I am sure many in this small town saw it an honor. Not me. I saw it as another excuse for him to spill his lies. With the help of three other moms I organized a protest. We dressed in red (for public education) and we raised one hand, It was one of the most moving experiences of my life. In those moments, I knew I was standing for something. I was standing for my child and other children in Kansas. 

After, the governor held his question and answer session, we went outside to continue our protest. An old cattle farmer came out and told us that we were selfish. It was really hurtful to hear that. Hear I am making a statement to The Governor because I want what is best for my child, and you call me selfish. I only want my child to have the best in life. I want her to have a good education and to be successful. Am I really selfish for wanting that?
We managed to make news throughout the state. Here are some of the links:

MSC News: http://www.mscnews.net/news/index.cfm?nk=46056#.VN6KZXl4gSs.facebook

Capital Journal: http://m.cjonline.com/news/business/2015-02-13/education-taxes-regulations-come-brownback-listening-tour#gsc.tab=0

Hutchinson News: http://www.hutchnews.com/news/local_state_news/brownback-speaks-in-holton/article_48b39b21-f5cd-595e-8e8b-0912ef48626d.html#.VN6WHhFkzoc.facebook

Kansas First News: http://ksnt.com/2015/02/13/upset-over-cuts-to-education-protesters-turn-their-backs-on-gov-brownback/

Explaining Liz

For the past week, I have been debating on whether or not I want to write this post. I think I am just going to take the elap and do it. Hopefully, it will help some other mom.

My kids have 5 cousins. They are all 6 and under. They are all very close. My neice is 5, and she and Liz go to kindergarten together. They look after each other. If you ask my neice she will tell you that she and Liz are "a little attached.'' I am so beyond grateful that they have each other. Becase of this, I think that Liz's differences have become more evident to my neice than to other cousins.

Last week, my sister and I were doing our weekly Super Mom trip to dance. Liz was having an especially difficult day. My sweet neice wanted to cheer up Liz (she was having a meltdown in her carseat) by making funny faces. It wasn't working. She told me that it worked for brother. She just could not understand why it would not work for Liz. I simply told her that we are all different, and Liz's mind works differently from hers. Luckily, children accept the simplest of explanations. She accepted it, and she went on without any further questions.

I knew a day would come when I would have to explain this to at least one of the cousins. It just so happens that the day before a very sweet lady had sat down with me and suggested a simple explanation for explaining Liz to Presley. That simple explanation came to my mind, and it was perfect for a 5 year old. I always wanted these questions to come from the cousins naturally, and I am glad that at least the first question came that way, I will say that I was not prepared for the emotional feelings that came with it. I think I did a good job of hiding my emotions, but the next moment I had a lone, I cried. I cried because my child was different and because she was struggling. Somedays autism is just rough. This was one of those days.

That day though, I was grateful for my neice. For the way she wanted to make Liz happy. For the way she looks after Liz. It never fails that at the end of the day my neice comes off the bus with her own things and half of Liz's. She watches out for her, she loves her, and she is best friends with her. Cousins are the best. 

What Inclusion Did For My Child

What is inclusion?

Inclusion means that children like mine are able to go to a classroom with typically developing children. It means they are in the "least restrictive environment." (I'd reference that but I have no idea if it has one, we use it so often in regular every day language.) I really love how it is explained here.

What has Inclusion done for my child?

When Liz first began preschool, she was communicating on the level of a 24 month old (she was almost 4). Through watching and interacting with her peers she was able to reach her age group (for the most part) on communication. We still have trouble with things such as approaching others, answering questions, and etc. She is beginning to master back and forth conversation. I truly believe that if she had been put into a classroom with other children like her, she would not have progressed as quickly.

Through inclusion, Liz has also been able to see what behaviors are or are not appropriate. She has been able to watch her peers and model things like pretend play (something she struggled with before). She is even beginning to pick on jokes that her peers tell.

Most of all, inclusion means that my child is not left out. She is not put into a classroom  separate from others. She is pulled out 1-2 times a day for special education services. Other than that she participates fully with her peers. She is able to remain in the classroom if special activities fall during a time when she would normally go to Special Education. Inclusion means that my child has friends just like any other child. It means she is just like any other kid.

What do I hope Inclusion does for my child?

I hope that one day my child will be able to be a fully functional adult. I hope that she will have a job, live independently, and have a family of her own. By being with her peers she is being exposed to real world situations (especially as she ages). This year we have had the unfortunate experience of learning that sometimes people are just mean. 

I hope that she able to learn self confidence. That she is able to look at her differences from others and turn those differences into strengths, I hope that she is able to learn to smile even when classwork is hard for her. i hope that that turns into a life lesson for her. 

These are things that inclusion prepares her for. I know that my child excels best in that "least restrictive environment." That environment is what will teach her skills to last a lifetime.

Some Moments Can't Be Captured

Tonight, I stood outside watching the snow. I felt each individual snowflake hit my face. I stood there completely mesmerized at the beauty I was witnessing. It was one of those moments I wish I could capture perfectly with a camera. Unfortunately, There are some moments that can never be perfectly captured.

About 18 months ago, I attended an autism conference. It was a month after Liz had been diagnosed. I was still very lost and confused. As I walked the hallways, I happened upon an ASD child having a meltdown. One thing that completely struck me was the patience his mother had as she helped him calm the storm. She sat down and held him. She gently rocked back and forth and whispered in his ear. In that moment, I witnessed true, undying love. That moment has stayed with me. As I stood there, an intruder in their world, I saw something beautiful. Just like tonight's snow,  it was a moment that was far to beautiful for any camera to capture.

I often find myself wondering why this moment has stayed with me. I'm really not sure. Maybe because it helped me to see that even in the worst storms there is always beauty to be found if we just take the time to see it. Sometimes it takes stepping away and making ourselves the intruders in our own world. When we step back and see the entire picture we may see something that we never expected to see. I'm sure that mom didn't think the moment was beautiful. It was probably something that she does every single day. I'm sure she was stressed and tired, and maybe she was wishing she was in the conference with all the other adults. Yet, there she was.

The reality is that this mother may never know just what a profound impression she left with me. Out of all the speakers I heard, nothing surpassed that one precious moment I witnessed. Being a parent to Lizzybug is one of the hardest most unexpected journeys I have ever been on. I often feel like I am failing or not trying hard enough. I often question my judgement or my parenting, Parenting an ASD kiddo is not an easy thing at all, but for me it has been rewarding. Every accomplishment, every smile, every battle won is worth it. When I step back and see the uncaptured moments I know that like the falling snow it is beautiful.

My poor attempt at capturing the snow: