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:

Autism and Vacations

This is a blog that I have been meaning to write for awhile. Just over a month ago, we returned from a 3 week trip to Utah. It was a sudden and unexpected trip. I was not sure how it would work since it involved a 16 hour car ride. Over all it ended up being a pretty smooth trip despite the stress we were under. Here's what we did:

The Car Ride

• Lots and lots of Lizzybug's favorite snacks.
• Bring comfort items (Liz has to have her "magic blanket")
• DVD Player, Tablet, etc.
• Be prepared for lots of potty breaks (I convinced Liz to wear a pull up and it was a good thing).

The Hotel

• Try to keep the bedtime routine as normal as possible.
• Bring a night light.
• Before bedtime, discuss the schedule for the following day.
• Talk to the hotel and see about the possibility of being on the ground floor and/or being away from others (we have a nosiy household and I wanted to prevent the kids from disrupting others).
• A room with a fridge and a microwave was a neccessity for us as Liz always has to have something to eat before bedtime.
• Liz has to know the time so we also made sure that she always had a view of the alarm clock.
• Unplug the phone; it makes the perfect toy!

The Day to Day

• Make sure that you pack plenty of breaks into a busy day. 
• Explain the day to them, and answer any questions or concerns that they may have. 
• Plan ahead. i,e, If you need to stop for lunch, know the location of autism friendly places to eat. 
• Take lots of pictures, and remember to not get discouraged. Make the moments count.

Life is Fleeting

Tonight,  I feel the need to venture away from my normal ramblings.  It's nearing 1 AM , and I'm wide awake listening to my husband snore.  This isn't necessarily an unusual occurrence.  Years of being an EMT wife have turned me into an insomniac. Tonight I have so many thoughts and feelings running through my mind.

This is our sixth Christmas as parents.  We now have 3 kids. I remember Liz's first Christmas.  She was 10 months, and Colby and I sat eagerly under the tree as we assisted her in opening her gifts.  We were so excited to share that with her. This year we will do the same with Brody.  It's hard to believe we have had 6 beautiful Christmases with children.  As Brody is likely our last baby,  I'm trying to make an effort to just pause and enjoy the beauty of the moments. 

Sometimes pausing means waking him up at 3 AM to smother him in kisses. It means midnight checks on the girls, and stopping whatever task I'm busy with to read them a book. When all is said and done my children won't remember the clean immaculate house, they will remember that mom read to them, laughed with them, and dreamed with them.

Life is fleeting. We blink and it's 6 years later. I want to live every beautiful precious moment. I want to smell the newness of Brody's head and cuddle with my 2 precious girls. I want them to say that their mom lived and loved. That she made a difference somewhere,  somehow.  I want them to tell people that their mom helped them dream. This life is short. Every second we breath is a miracle.  Every sunset and sunrise is a blessing.  We need to cherish those we hold dear and remember to pause and enjoy every single moment. So this Christmas hold your little ones near, take their pictures, smell their heads, and tell them that you love them. 

He Prepared Me

I have spoken before about how Heavenly Father prepared me at an early age to be an ASD mom and advocate. As a teenager, I spent hours researching autism and the benefits of dance therapy. I was like a sponge. Before Liz was even diagnosed, I enrolled her in a dance class. I knew in the pit of my stomach that she had autism, and suddenly all the research that I had once absorbed came back to me. I often wonder how different this journey would have been if I had not been prepared early.

I think of The Bible, and the way that many of the prophets were preapared for things that happened to them. We all know the story of Noah, and how he prepared by building an ark. I have found that every time a new curve ball comes my way I am prepared. It happens in ways that  I would never expect. As a teenager, I never would have dreamed that I would have a child on the spectrum. Yet, that love for those on the spectrum was placed in my heart. As I have started to advocate, I look back on seemingly unrelated experiences and realize that I was being prepared. For example, my husband was hospitalized for a time. As he sat unconscious and barely clinging to life I advocated for him. I never would have imagined what that would lead to.

When we recieved this diagnosis I was angry with God. I could not figure out why he would put this on my shoulders. All I could focus on was the present and my own feelings. As I gradually stepped back and looked at the larger picture I realized how miraclous it all is. Everything fits. I can truly see Heavenly father's hand in every small detail. When I feel like I just can not do it anymore I try to take a deep breath, have faith, and remember that he is preparing me for something larger than I can comprehend. His work is beautiful. He has a hand in our lives, and he knows each of us. He knows our pain. He knows our struggles. He knows our worth. All he requires of us is to put our faith in him. If we can do that we can find peace and hope no matter how dark life seems. I know that with all of my heart.

To those that are struggling, please be strong and have faith. You are being prepared for miracles. It may seem hard, and you may feel like giving up, but push on a little further.

Patterns

Last year Liz began to recognize patterns on paper. I was so proud the day she came home, pointed at figures on a sheet of paper and then told me that it was a pattern.  This year,  Liz has started to comprehend patterns in her daily life. The good thing about this is that she able to verbalize that she likes patterns.  The bad part is that she demands these patterns. Our life has turned into a series patterns. For example,  she enjoys her school lunches to move in a pattern (one day she brings lunch, the next day she ears school lunch, then she brings lunch, and etc.). If anything changes she lets us know that she is "so angry" because we aren't "making a pattern. " Don't even try to tell her you are making a new pattern.  The outcome is not a good one! So here we are the always unpredictable Van Wagoners living a life of patterns.