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. 

An Update

It's been awhile since I have blogged. We had to leave to Utah for 3 weeks due to a family emergency. It's crazy what 3 weeks away from home can do to an ASD child. Transitioning back to "normal" has been difficult for Liz. She hasn't wanted to go to school. She wants to stay home with us.
We also have a bully at school, and she is making life difficult for Liz. It seems that Liz isn't the only kid she is picking on. We have been working with Liz on not letting this girl's opion knock her down. We want her to know that her opinion of herself is the only one that matters. The most difficult thing has been trying to get her to report the problem to the teacher. It's a hard concept for her to understand. Thankfully, her teacher has taken this issue very seriously.
Liz is doing much better with her sight words, We know way more than we did just a few weeks ago. We have been slowly working on one sight word at a time, and then reciting the ones that we already know. Reading seems to be a weak spot for Liz. I think she prefers math.
Overall, Liz is beginning to readjust to our life. She is eagerly awaiting Christmas and Christmas break.

Van Wagoners in St.Louis

We have been given the opportunity to enter Brody into a sibling study in St.Louis.  We just made our first trip.  I am beyond excited about this study. This is a huge study that could lead to earlier diagnoses for millions of children.  Over the past year, this is something that I have become passionate about. Liz had a late diagnosis.  I can't help but wonder if our road would have been easier had she gotten that dx earlier.  It has been proven that the earlier you are able to seek intervention services and therapies,  the better chance that child has at being successful.  What if we could diagnose a child with ASD at 6 months?  Think of the possibilities and advantages.  Parents could begin seeking treatments before the child was a year! I am excited to begin a 3 year journey with these people. I am excited to make a difference in the future of other children and families. 

The Minutes That Lasted A Lifetime

It's been over a year since our diagnosis,  and I still remember sitting in the waiting area after Liz's test. We sat there waiting while a group of professionals determined whether or not our child had autism,  whether or not our lives would change forever. That was the longest half hour of my life.
I recall walking over and grabbing a few brochures to read. Brochures about new studies, support groups, and genetic testing.  I paced the floor and wrung my hands. 
In those moments, I knew deep down what the results would be. Over the past 3 months, I had read every piece of literature available to me.  By this point,  I had battled the school, myself, and God. I knew what I didn't want to believe. 
Then, they called us in. You know that feeling you get on a roller coaster when your stomach drops? That's what I felt. I wish I had realized then that this diagnoses was not some doomsday event for my family. This diagnosis would lead me forward. It would teach me to advocate for my child and for others like her. It would lead me to begin a support group in my area. It would lead me to an amazing group of women who have become some of my greatest friends. It would teach me hope. It would teach me patience.  But most of all it would teach me love.

It's Never to Early to Think About Time Change

There are 2 days a year that I dread, the day daylight savings time begins and the day it ends. It can literally take weeks for Liz to adjust. I'm the past, I have dealt with 3 and 4 AM wakeups until the time changes back several months later. I can be exhausting.
This time I'm fighting back!  We are roughly 7 weeks away from falling back. I plan to move Liz's bedtime back 5 minutes each week. Then we have a week to adjust before the change even hits.
I'm also planning to invest in a toddler alarm clock that changes colors to let her know when it is ok to get out of bed.
I have high hopes that one of these methods will work! Otherwise, I will be available to talk at 3 or 4 AM starting November 2.

Don't Fear the Label, Embrace It!

It's 2014,  and we still live in a society that fears "labels." Instead of viewing labels as a way to better understand a person, we see labels as something bad. In reality,  labels help us unlock potential in those who possess them. It wasn't until Liz began OT that I truly saw how incredible her mind was. Her label unlocked OT for us.

I won't lie.  After we received our referral to have Liz evaluated for autism, it took me a few months to even call and make the appointment.  I struggled with accepting that something could be wrong with my child. One day, I realized my child was not happy,  and neither was I. That was a major turning point for me. I realized I had to do something. 

To all the parents out there who know something is off, but you aren't sure whether you want to label your child, I promise it will be the best thing you ever do for your child. Don't be scared of the label. You will soon realize what a remarkable and amazing thing that label is. It will open up so many doors for your child.  It will make things easier for you. Just take the leap and do it!

A Product Review

Liz hates having her hair washed. It's actually a pretty traumatic experience for her. I'm pretty sure it's all sensory. Poor girl also has curly hair that tangles easily.  So I recently discovered a product sold by Sage Products that allows you to wash and condition hair without water. It looks like a shower cap.
The steps were simple. I stuck it in the microwave for a few seconds, so that it wasn't cold. Then, my sister and I massaged it in for a good 2 or 3 minutes.  Because Liz has curly hair we let it stay on in a few more minutes.
The final result was, her hair did in fact look like it had been washed. It did not condition as well as I would have liked (then again Liz gets huge tangles so easily) but we solved that with a wide tooth comb and some detangler. Liz wasn't thrilled about the cap being on her head, but she did not scream about it. It was a little large because it only comes in adult sizes. The price is also a bit high for regular use (there's only one per package).
Will I order them again? Probably.  Anything to make our lives a little easier!

You can find the product here: http://shop.sageproducts.com/comfort-rinse-free-shampoo-cap-p14.aspx

2 Weeks In The Trenches

Two weeks of school down.  I've already sent several emails to the school. I feel like everything is a battle.  I just want my child to succeed. Am I asking that much? Liz does seem to be enjoying school though.  She's also making friends! 

I know it had been a hard transition for her though. It all comes out when she gets off the bus.   It comes out when she feels safe and loved, at Papa and Nana's home and at our house.  Those are the places where she knows she's surrounded by people who love her and care about her, people who will take her as she is.

It's been a rough few weeks. I am so proud of Liz though.  She has gone out and made friends, had mostly good behavior in school,  and seems to be keeping up with the rest of the class.

I have high hopes that over the next few weeks we will be able to iron out everything with the school.  Until then, I'm trying to take deep breaths and counting to 10 repeatedly.  Trying to not let these past few weeks break my faith in the system. I guess you could say I'm just hanging in there. 

First Day Part 2

I was so excited to get Liz off the bus, but it was not what I had expected or hoped for. I had hoped she would come inside and tell me all about her day. Instead, she got off the bus and angrily threw her things down, refusing to talk. I was pretty emotional. I stepped away for a second and slid down onto the floor, buried my head in my hands, and I cried. I cried more at that moment than I had cried all day. Most children come home from their first day and excitedly spill all the details of what they did. My child could not even tell me if she had a good day or not.
It is in these times that I'm so grateful to have my husband. He understands that sometimes autism is just hard. Just knowing he was there to reach out and give me a hug made all the difference. The remarkable thing about having a child with a disability is the insane amount of teamwork spouses have to give. We are a team. We are there to tell the other that it is okay. I really do not know how I could do this alone.
After awhile, Liz calmed down enough to have a snack. That seemed to help her cheer up some. I never did get a lot of details out of her. She told me she liked her teacher and that was about it.
Today when she came home, it was pretty much the same story. I am hoping that as she adjusts things will get easier. For now I am trying to stay strong and roll with the punches.

First Day of School!

Man I can't believe my Bug started school today! Crazy how that happened so quickly. We started the morning bright and early as Bug has to board to bus between 6:35 and 6:40. Ouch! I am so NOT a morning person.
I was really excited that Liz has a para on her bus, and the bus driver is SO sweet. Liz loves the bus. After she boarded the bus, I followed her to school. I wasn't going to miss out on her first morning. By the time she got to school, she was covered in something black that looked like grease (typical Lizzybug). She went into the gym and had breakfast. She took her sweet time with that. When she was finsihed I was able to walk her to her classroom.
Then that moment came. The moment when I had to hug her goodbye. She didn't want to let go of my neck. She clung for dear life, and begged me not to leave. So I did what I had to do, I let my Lizzybug have her wings, held back tears, and slipped out of the room.
So now I sit here, looking out my bay window, and waiting. Waiting for my Bug to come home. Waiting for a hug. More to come tomorrow, I think I see a bright yellow school bus topping the hill. :-)

Bug and Horses

I don't know if I have mentioned how much Lizzybug loves horses. In fact she is quite remarkable with them. She can get them to do things I can't! She never ceases to amaze me. She can sit in a saddle better than most adults, and she does so with such an ease. She just looks so natural! I don't know how else to describe it. The horses love her just as much as she loves them. For example, just a few weeks ago I was giving the kids a short ride on one of the horses. The horse absolutely refused to move. With some help from a friend, we got him to move. Later, Lizzybug took over holding the horse and led him around the yard. He didn't even hesitate for her, he just followed along.
If Liz goes down to the barn, all the horses flock to her. She just naturally attracts them. I have watched her around horses, and I have personally witnessed the benefits of horses for her. It is because of this that when a friend (and fellow special needs mom) approached me about starting an equine therapy program in our area I told her I was interested in helping. I know this will be a long journey for us, but it will ultimately be rewarding. Now that I have (mostly) recovered from childbirth I am looking forward to the next step of that journey. I am looking forward to seeing what horses can do for other kids with disabilities. This is probably one of the most exciting projects that I have had the oppurtunity to be involved in. It's amazing how much autism has changed my life. I would not be having these amazing experiences without it. Never in a million years would I have dreamed that Lizzybug's diagnosis would be such a blessing in our lives.

Time Please Stop

As I sit here with a sleeping baby on my chest,  I realize how fast time goes by. It doesn't seem like so long ago that this newborn on my chest was Lizzybug. In a few short weeks, our lives will change forever as she walks through the doors of her elementary school.  I can't believe she's entering kindergarten.  I have such a mixture of emotions everything from fear to excitement. My greatest fear is that Liz won't have friends,  that she will be labeled the "weird" kid and be bullied. I pray that at least one child is able to love and accept her. I'm excited because this is is a new adventure for her. My goal is to help her find her wings, to be as independent as possible, and this is the first step for her. So with a leap of faith we are preparing for kindergarten.

Baby Boy is here!

Liz seems to be handling it relatively well. The main thing has been attempting to teach her boundaries and rules. She wants to be a little more independant with him than she should be.
The birth story: He is probably my most boring birth story yet! In a good way! After fighting pre eclampsia in 2 pregnancies, I managed to dodge the bullet in my third.  I went in for my scheduled c-section at 39 weeks and 2 days. My blood pressure did drop (had this happen with Presley as well) due to the anstheia, but I had an amazing ansethologist who handled the problem quickly and an amazing doctor who showed me lots of compassion.They brought Colby in soon after that. They had him out shortly after. It did take them a little a longer because they had to cut through all the scar tissue, but he arrived perfectly healthy and absolutely adorable.
Now for the pictures of his cuteness.

Sisters Helping

A Week Old

The two of us in the hospital

Cute boy 2 days old

Just born before he was even bathed

Us in the OR

Our One Year Mark

Friday marked the day our lives forever changed. I spent the weekend thinking about how far our family has come, how far Liz has come, but most of all how far I have come. A year ago, I was breaking down into tears randomly, I was angry with God, and I wanted our pre diagnosis life back. I was really struggling with accepting that a diagnosis did not change my child. I was on my way to learning that a diagnosis had simply opened up an entire new world for my child and our family.
The last year, has been full of trials and difficulty, but it has also been the best year of my life. I have met such amazing people, I have been able to reach out and help others, to learn who my daughter truly is, and to learn a thing or two about myself. This is not the easiest way to travel through life, but it is worth it. It is worth every smile and every tear. It is simply worth it!
Over the past year, I ahve had the oppurtunity to learn so much about my Lizzybug. I will never forget our first OT appointment with Liz. It was so amazing to finally see what she was capable of. I felt like that first OT appointment opened Liz up to so many things. And while she was opening up, I was,too. I was able to slowly let go of my feelings of resentment, and to slowly embrace her diagnosis. It was like I was truly seeing my child for the first time.
I feel honored and blessed to be a mother to this child. I don't know how I got lucky enough to lead this sweet spirit through this world. She has taught me more in the past 5 years than I have learned my entire life. I love my bug!

To the Mother of the Daughter with the matted hair

I once worked at your daughter's school. I judged you as I watched the special ed team bending your ASD child over the teachers' lounge sink. I watched as they combed, brushed, cut, washed, and conditioned your child's hair. I wondered how a person could send their child to school in that state. I thought horrible things. What kind of parent were you?

Now here I am, just over 5 years later. I just spent the last half hour combing, brushing, conditioning, and washing my own ASD child's hair. The entire time all I could think about was the time I spent judging you. Never once did it cross my mind that a brush might be physically painful to your child. Never once did I stop to think that maybe, just maybe, you were more concerned about your child eating breakfast in the morning. Or maybe you spent the morning finding an outfit that didn't hurt her. I have no idea the circumstances, and I should have never judged.

I wish I could turn back time. I wish I could call you up, and tell you what a great mom you are. I wish I could have seen past the matted hair and seen the good that you were doing. Instead, I pegged you as a horrible neglectful parent. For that I am sorry. In reality, I am sure you were doing the best you could. Isn't that what we all do? We survive day by day, prioritizing the needs of our children. I am sorry.

Over the past year, I have learned to be slow to judge. We never truly know all the circumstances surrounding a situation. If we would only take the time to pause and show sympathy instead. So when I start to judge others I will remember you, Mother of the child with the matted hair. I will remember that I did you wrong, and I will do my best to not judge, to think twice, to show sympathy. Thank you for the lesson.

Just short of a year

I was thinking today about where we are now compared to a year ago. On Wednesday, her OT told me we would be switching to every other week appointments so that we could prepare for discharge.  It's hard to believe we have made it this far. A year ago, I couldn't even watch my child around other kids without crying.  Even though it's still hard sometimes,  I find it is getting easier. Most days, I don't feel like shutting my family away and sheltering them from the ignorance of the world. Most days, I am able to get up and fight again. I'm no longer angry at Heavenly Father. I feel like we are seeing the sun after a dreadfully long winter.
I've come to realize how beautiful our little world is. It's far from perfect,  but every little part of it is amazing.  I still get overwhelmed and I still worry about Liz's future (especially the up coming school year), but for the most part I feel like I am handling things better. When the hard days come, I try to take it one tiny step at a time. I try to make it minute to minute. And when darkness falls, and she's finally sleeping I lay down with her, and think of how truly blessed I am.
I never thought this would be a road I would travel. I never thought I would be a parent to a special needs child.  I always felt pity for people like me, and I wondered how they did it. The truth is you just do it.  There's not another option. I'm not an amazing super mom. I'm not your Susie homemaker. I'm just a woman who loves her child,  and would do anything to see her happy. It requires me to fight a little harder, breathe a little deeper, and find more beauty in the rain. In the end,  I'm just doing what any mom would do.
I suppose the month of June will be a month of reflection for me, a month to realize how far we have come.  It will be a month to just be grateful.

Social Media Vacation

My family is taking a vacation from technology for a week.  Technology (especially social media) rules our roost more than it should.  We are experiencing the hardest part of our year, summer time.  The transition to not having school is especially hard for Liz. I plan to use this week for a variety of things: getting Liz on schedule,  quality time with my family,  inviting the spirit into my home,  and working on controlling the amount of and types of media we allow in our house.

The rules are simple:
#1. No social media.
#2. No unnecessary Internet usage.
#3. Phones are only to be used for texting and calling.
#4. Only church movies will be viewed in our home.  No tv shows or sports.
#5. Music needs to be uplifting and invite the spirit.
#6. All other forms of media (books, magazines, etc.) Should be clean and gospel centered.
#7. No tablets.

Technology can be our best friend,  but it can also enslave us.  I feel like my family needs a break in order to get on the right path.  I truly believe this will make a difference in the spirit that dwells here. I also believe that this week of preparation will help me be a much better Mommy to my bug.

Recital Photos

And some recital photos before I take a week long technology vacation to clear my head.

Dance Recital

Lizzybug and Butterfly both performed in their dance recital.  They had 3 numbers,  and they were absolutely adorable.  I was one proud mommy.  I love that my bug loves to dance. It means so much to me, and I know that as she grows it will become extremely therapeutic for her. It will help her learn how to cope. I know that putting her in dance to begin with was truly an inspired decision.  It was something that I chose for her when all the other doors were closed.

I recently found this in her end of the year school work.  It really touched me that dance means so much to her.

We Did It!

Lizzybug graduated from preschool today. I am so very proud of her. She's beyond excited to start kindergarten next year. In fact, she wants to just skip summer vacation. I am so proud of everything that she achieved this year. We have seen significant imporvement in her verbal skills, scanning skills, and eating. Hopefully we will see even more improvement next year. Her teacher and para will both be at the school for her first day of Kindergarten. I am so glad that they are making the transition as easy as possible for her.

SOS Success

Our behavioral therapist sat down and looked at all the math from the 2 weeks we did the SOS Diet. I was quite surprised at the differences between week 1 and week 2. During week 1 Liz experienced a 20%  refusal rate. By week 2 that sat at 0. That means she ate least interacted with everything that we presented her with. We also saw a decrease in the amount of snacks she ate and an increase in what she ate during main meals. I expected results and I felt like saw results, but I didn't expect it to be tgis phenomenal. We will probably do another 2 week run in July right before school starts back. I'm pretty darn impressed.

How do you do it?

I have someone ask me this at least once a week, and I never know how to respond. The only answer I have is, "I just do." I don't have a choice not to. I know some days I do better than others. Some days I survive on survival mode, and I do the bare minimum. I have had to learn that that is okay. I do have a few tips for special needs parents.

#1. Take care of yourself. A happy mom is a good parent. Take time for you. Do something that you enjoy.
#2. Have a supportive spouse. As spouses you need to met each other in the middle. Give each other breaks. If you feel like your spouses isn't helping enough nicely talk with them about it. My husband is my biggest support system. I couldn't live without him.
#3. Find a support group. If you can not find one, make one! I have found a lot of support in my once a month meetings. It is so important to have someone to talk to.
#4. Take up a hobby. This somewhat relates to #1. I think it is important to have a hobby that is just about you. I enjoy running.  is my time to think and reflect on my day.
#5. Keep a stash. A stash of goodies that is. Some times the best part of my day is putting the kids to bed and spoiling myself with goodies from my stash.
#6. Good Therapy. For your child or yourself if you need it. I have found a lot of hope via Lizzybug's therapist. They have moved mountains for us.
#7. Volunteer. If you feel like you can handle the extra stress, find a way to give back to the special needs community. Just make sure this isn't something that will add to your stress. For me, I enjoy giving back to the community, and being involved in various causes.
#8. Take it easy on yourself. If you don't feel up to cooking dinner do not feel bad about swinging through the McDonald's drive thru. If you have a sink full of dishes, that's ok, too. You don't need to be perfect!
#9. Take time to enjoy your child. At times, it is easy to get caught up in the diagnosis and doctor appointments. Take the time to just sit and spend time with them. Those times are special, and they help me understand my kids.
#10. Work on your marriage. Take time to date each other. Many of our dates are spent at home after bedtime. We have enjoyed movie nights, star gazing, or just talking. You do not have to leave the house to have a nice date night.  Make sure that you and your spouse are communicating about concerns you may have.

These are some of the ways I do it (in no certain order). I have learned to be a guilt free parent, and to enjoy time to myself. I have to give a huge shout out to my husband. He has been so understanding of my needs, and has made sure that I have time for myself to do things that I enjoy. It's important to remember that you are more than a Mom. You are a person just liek your children, and you have needs just like them.

Lizzybug has a loose tooth...

And it is all we have heard about today! It's her first one, and she is extremely concerned about it. Liz tends to become obsessive over things, and she is 100% obsessive over this. I think she asked me 30 times in 5-10 minute period if it would hurt. She also wants to know when it will come out, how it will come out, and why it is coming out.
This is just one example of something she struggles with. Comprehending changes can be really dificult for her. She will often obsess over the small details. Hopefully soon we will have a tooth, and Bug who is a little less stressed!

Closing Out Autism Awareness Month

This month I have spent a lot of time thinking about where we are now compared to a year ago. A year ago, we were still waiting on an appointment for a diagnosis. I felt like everything was falling apart. We were afraid of the uncertainty. Monday, Liz had a well visit. Her doctor was amazed at how far she had come just since October. Liz is offically in the 10th percentile (the highest we ever been) for weight! She has also grown 1.5 inches since October. Her doctor was amazed at how much her speech and behaviour had progressed in that time period.
I know sometimes it is harder for my husband and I to notice improvement because we are around her all the time, but I do know she has taken some major steps the last few months. I am so proud of everything that she has done to move forward. A lot of work and tears have gone into getting her where she is, but she is getting so much closer to where she needs to be.
Even though April is ending my family will continue to raise awareness all year long. Autism never sleeps in this house. We will continue to teach others how to lovingly accept our child. I am so glad we had the chance to "Light it up Blue" this month.

Kindergarten Roundup Tomorrow!

Tomorrow we will be registring Bug for school. She is so excited. A few weeks ago we had our transition IEP meeting, and I was really pleased with what they have put together. Liz will have para in the classroom for all of her core classes. She will be pulled out for a half hour of reading and a half hour of math. During that time they will prep her for her skills that she will learn the next day in class. She will also have 20 minute speech sessions 4 days a week. She is exempt from all state testing, and she will be pulled out and read any tests if she needs it.

I don't think we could have asked for a better IEP! I was really impressed. There wasn't much that I felt like I needed to question. It's probably her best IEP yet. It made me feel much better about the transition next year. I feel like they are doing a good job of offering her proper supports.

Tomorrow will be her second tour of the school. I am glad that she's been able to see it multiple times. She realzies she's going to the "Big Kid School" next year. She knows she will have new teachers and that there will be new kids. She is really excited for that.

I just wish I knew if we were going to be living in this school district next year. That's the one thing about our situation that stinks. That's questionable right now. Hopefully we will know soon so we can really start to prep her. 

SOS Diet Final Update

I got so caught up with Autism Awareness Month that I completely forgot to continue updating. After 2 weeks on the SOS Diet Liz ate mashed potatoes, something she had formerly liked and chosen to remove from her diet. It was just a few bites, but it was awesome! She also has been much better about not grazing (as long as I remember to have our assigned snack times). I feel like the biggest benefit for us was having a set schedule for meals (including snacks). Our behavioral therapist had also suggested moving our larger meal to lunch time, and they made a huge difference in how she ate. Because my husband works nights, this actually fits our schedule better. So would I recommend it? Yes, absolutely. It was a lot of work, but we saw results.

The Day My Life Forever Changed

On June 27, 2013, my husband and I walked into a clinic with our oldest daughter. We had no idea that when we left our lives would be forever changed. We knew autism was on the table. Unfortunately, no amount of homework prepares you to hear those words, "Mr. And Mrs. Van Wagoner, I don't know how much you know about autism, but that is the diagnosis we are giving your daughter today." Those words are forever ingrained on my soul.

I remember the emotions. The relief of finally knowing what was wrong, the fear of the unknown, and confusion about what to do now. We felt so overwhelmed. We felt so lost. So many questions began to run through our heads. What do we do now? Where do we go for help? What will her future be like?

Over the next several months, I was angry with God. How could he do this to my family? Why us? Hadn't we had our own fair share of trials? Give it to someone else! I stopped talking to God. I did the only thing I knew how to do, I ran. I ran mile after mile, as if by some miracle each mile would take a little of the autism away.

Then one day, I had a startling revelation, this wasn't about me. This wasn't about my husband. This was about Liz. I sat there, and I envisioned her sitting with a loving Heavenly Father before she came here. I envisioned him explaining to her that she would walk this world with this obstacle. I imagined him telling her that she would not walk this path alone. He would be there, her earthly parents would be there, she would build a village of supporters, and she would be blessed. I saw Liz agreeing to this plan. It hit me like a brick. She agreed to this. She knew her path. She was willing to take it all on. And if she was willing to do that, I needed to do it,too. I needed to accept it.

Obviously, I have no idea how things played out in what we Mormons refer to as the pre existence (belief we existed before we came to Earth), but I like to think Heavenly Father was open with us about what we would face on this earth.

I still struggle sometimes. I still have days where I'm not sure I can make it another day. I still cry. I still question myself. One thing I have stopped doing is questioning Heavenly Father. I have come to realize and accept that this is his plan, and I need to embrace this. The diagnosis didn't change who my daughter was. It opened up a new world for her and for us. The way our life was forever changed was for the better. The past several months have been absolutely beautiful. I have watched my daughter learn and grow. I have watched her mind expand as she experiences therapy. I have had my heart touched over and over again. I have felt my faith in a loving Heavenly Father grow. I have been driven to my knees in thankfulness. I have watched my family grow closer together. I have new friends. I have built a village. I have learned that no matter how alone we may feel, we are never alone. I have learned life never turns out how we expect.

All of this is beautiful. Every second I have with my daughter is a gift. Every word she speaks, every puzzle she assembles, all of it is absolutely beautiful. I will never forget the most remarkable, life changing, beautiful words ever spoken to me,"Mr. And Mrs. Van Wagoner, I don't know how much you know about autism, but that is the diagnosis we are giving your daughter today." This life is ours to embrace, this diagnosis is ours to embrace. Love every minute and it will be worth it. Because of ASD I have been blessed beyond measure. 

Thank you, Bug, for teaching me to live.

An Invitation

Today new numbers were released. Autism is now up 30% to 1 in 68. These numbers are incredibly high. In 2012 the numbers were 1 in 88. The rate has continued to increase over time. My biggest concern is that we do not have enough resources for all these children being diagnosed. And what about when the kids become adults? Who is going to take care of those who needs constant care? What are these kids going to do for work? Are colleges going to be equipped for them? These are questions that WE have to bring attention to. I am just one mom, but I know that I can make a difference. If everyone would come together, and raise their voice, call attention to this issue, then we could all make a much bigger difference.

I know people thing autism awareness is silly because they think everyone knows about autism. They may know that autism exist, but they may not know how many kids it affects, how it affects them, or even that there's a significant lack of resources. When Bug was diagnosed, I knew what autism was, but I had no clue how scarce the resources were until I was thrown into that situation. Suddenly, I was facing an uncertain future for my daughter, and I did not know what to do. It wasn't until I began reaching out to people who knew that I found resources.

Which leads me to another pressing issue. We wasted months after we got her diagnosis. Precious months that we will never get back. Why? Because I had no clue what to do after her diagnosis. I didn't know where to go for treatment. I didn't know that occupational therapy would be beneficial for. I was completely clueless. We need to make an effort to fill the gap between diagnosis and treatment. That gap is time that we can never get back, time she could have been getting treatment.

Don't even get me started on insurance coverage. So many ASD families are paying for treatment completely out of pocket because it is not required to be covered. So many families mortgage their homes, take up second jobs, and sell things just to give their child the best chance that they possibly can.

So I am asking everyone to Light It Up Blue next month. Out out your Christmas Lights, change your porch light, change your profile picture on facebook, do whatever it takes. These kids (and adults) need us to all come together to raise awareness. If we don't do it, who will? I have only listed a few reasons why this is so important. I could go on. Please take up my invitation. I will be posting pictures next month of my home and any others who email me pictures, and take up our invitation. If you don't feel comfortable posting a photo of your home how about a photo of your family in blue? Your dog in blue? Be creative, and help me raise awareness.

                                                   And who can say no to these cute faces?

Day 3 and 4

I am still staying pretty full. The kids seem to be as well. Today (Day 4) Liz didn't eat a ton. I am wondering if she is coming down with something. Even some of her favorite snacks she skimped on. Poor girl. Presley seems to be doing better about eating, and this morning she even insisted on eating her breakfast at the "big table" instead of the kids' table. I am really loving sitting down with the girls for all their meals. I have made a point to put my technology away, and just talk with them. So far I am pretty pleased with the results of the SOS. Liz seems to be branching out and trying new things.

SOS Day 2

Yesterday was a little harder for me, mainly because I had a headache. Liz did really well though. It has actually been harder for our youngest. One thing I have noticed is that we have all pretty much stopped grazing. I've been a grazer my entire life, unable to ever really feel full. Sitting down for assigned snack times has done wonders for all of us. One thing I will do for next week is get a menu from the school as some of my things have overlapped with theirs. I should have done that to begin with.

SOS Day 1

Today actually went fairly well. Liz ate pretty good. The hardest part for her was to sit at the table. She wanted to sit at her kids' table. I made sure we all sat down together as a family for every snack or meal. At lunch time, she wanted to go and play instead of eating. I told her she did not have to eat, but she did have to sit down with the family. She ended up eating something even if it was not as much as I would have liked. Today went SO smoothly. I was really glad that I took the time to divide up out snacks. It was really easy to just grab what I needed out of the fridge already in its ziploc bag. Here's to tomorrow going even better!

Rules Of the Game

Next week we begin the SOS Diet. I felt a bit overwhelmed. Normally, my kids tend to snack on the same things. This is going to be very different for my family. These are main rules.

Rule #1 and the most important rule is that nothing can be served the same way in a 48 hour period. Something about the taste, texture, shape, etc. must be changed.
Rule #2 is that Liz needs to eat every meal at the table even her snacks.
Rule #3 is that our meals need to stay between 15-20 minutes.
Rule #4 she needs to be given 3 options at every meal (even snack time).

As soon as we got home from grocery shopping I divided up the snacks. I planned for 2 snacks a day. Liz has school in the A.M. so I think 2 is more than enough when you consider that she is getting 3 things with each snack. I divided each one into ziploc bags (unless something needs to be made, in that case I put in a slip of paper). Each zip loc bag was labeled with Day and Snack #. I told my bigs that they can only have the food in the ziplocs when mommy says it is time. I actually like this divinding of the snacks, and I think I will continue to do it. I bought a few extra snacks for my youngest child to have in the mornings.

Some things I got for snacks:
Apples (green and red)
PB&J sandwiches (different bread, different jam, different texture PB)
Cheese (string cheese, cubed cheese)
Animal Crackers
Goldfish
Granola Bars (different flavors)
Gogurt (different flavors)
Nutrigrain Bars (different flavors)
Raisins

I basically planned 2 menus and repeated them every 48 hours. This made the planning SO much easier for snacks. The actual meals were easy, the snack were the hard part.

As my husband works nights, Lunch is our family meal most days (even though Liz has lunch at school). Liz is starved by the time she gets of the bus so it works out anyway. Dinners are our lighter "lunch" type meal.

So my plan is (Liz eats Breakfast at school):
Lunch when Liz gets off the bus
Nap Time
Snack
Dinner
Snack

Hopefully this works out. The weekend will be a little more tricky. I might have to add in a third snack for those days. We will see. Monday I will begin a daily log on how things are going.

SOS!

Monday we will start the SOS Approach to Feeding. I am slightly nervous about this. It's a lot to take in, but I think we are ready. The hope is that we will be able to expand Liz's diet, and help her establish some better eating habits. After reading up on it, I think all kids could benefit, not just kids with sensory issues. It focuses a lot on getting them to branch out and try new things. It also helps them establish some good habits.

I loved the page with myths. I love, love, love that is stated kids need 5-6 meals a day! I don't know how many times I have heard people say kids shouldn't snack. I snack, so I would assume my kids would need to as well. Especially with the amount of energy they use. I also love that it addressed that some kids WILL starve themselves. I always hear that Liz won't, but the thing is, she will.

This should be an interesting experiment for our family. I plan to update regularly on our progress over the next 2 weeks. I am hoping that we see some major results. I am so glad that we have a therapist who listens to our concerns and helps us find solutions. She has worked some serious miracles in our home.

Moving Forward

Liz has been excelling in her private OT. She has now met 2 out of 3 of her major goals. Today her OT told me that she doesn't for see seeing Liz after July. Just a few months ago if I had heard this I would have ran home in tears. I would have been terrified, but I do feel like Liz is having some major break throughs lately. I also know that of she regresses we can always go back. It is still scary to think about, but not nearly as scary as I would have found it 3-4 months ago.
This is a huge step for Liz. When I compare her behavior and struggles to where we were a year ago, I can see a major difference. OT brought out a different side of Liz. She became for social and suddenly less afraid to show who she is to others. This is really a huge mile stone for her.
She is still struggling in speech. While she is more verbal,  her auditory processing disorder will be her greatest obstacle to overcome. I see her struggle with it on a regular basis, but I still see progress. She is talking to us non stop now. It's like she is trying to make up for all those years when she could barely tell us what she wanted or needed. I don't think she ever stops.
It feels so good to be moving forward and seeing progress. Way to go Liz! I am so thankful for the fabulous therapists that we have been able to work with. They have all taken the time to get to know Liz and spend time with her. It has been worth every penny to hire someone private.

Dear Lizzybug,

Today you turn 5. I can't believe it! Your Daddy and I have loved every second that we have spent with you. From the day that you were born we knew you would stand out. You were so bright eyed, so alert, so unique, so you. I will never forget the look on your dad's face after I pulled through sedation. He was so happy. I instantly loved him more than I ever thought possible. You sealed a bond between us that can never be broken. You made us a family.

Lizzybug, I know this life will be hard and full of challenges. I know there will be times that you will think you can't take another step. There will be times when you want to throw in the towel and declare yourself done. Don't give in. You are worth it. You are beautiful. You are amazing. I will always believe in you. I know that Heavenly Father has great things in store for you. When you feel alone, lost, or scared trust in him. Give him your burdens.

My bug, you made me a Mommy. You taught me more than any other human being could. You taught me how to love, how to fight, how to care, how to laugh, and how to see beauty in everything. Every day you inspire me to be a better person. You and your sister are my everything.

So today, laugh a lot, have fun, grow a little bigger, but please let me cuddle you for a few.

All My Love,
Mommy

This Week Has Been Tough

It seems like some weeks/days are harder than others. This week has certainly been one of them. Usually, when a week is like this I hide out. Unfortunately, it's been way too busy around our house for that. So most days I was forced to shower, get dressed, and actually go somewhere. I guess that's not a bad thing.

But instead of focusing on the bad parts of my week I won't to focus on the good. On Sunday, I felt love when someone took the time to come sit with me and help out with Liz. That small gesture went farther than that person will probably ever understand. Just knowing that someone cared enough to leave their pew with their family to tend to mine made my day. This week I am thankful for a network of friends who understand what I am going through. Friends who are able to tell me to snap out of it. Friends who aren't afraid to be honest with me. I am thankful for a husband who helps out aorund the house, who helps with the girls, and who loves me even at my worst. I am thankful for those who have called me just to see how I am doing (even if I don't always answer the phone) and for those who have dropped off brownies (hey that was on my list of ways to help out). 

I find that too often I become so consumed my all the negative around me. I need to take the time to focus on the blessings and the angels sent my way. This isn't easy, but gosh dang it, it is worth it! Now I need to find a way to pass on the love.

So What Have I Been Up To?

A few posts back, I talked about wanting to make a difference. With the help of a new friend, I set the plan in motion. It has been such an awesome experience for me. We offcially have a support group in Jackson County, Kansas for special needs parents! Details are in the news clip here.

I want this post to be about my feelings regarding this group. I feel like it is nothing short of a mission from my Heavenly Father. As we have organized this group, we have watched things fall into place better than we could have ever imagined. I feel like people in Jackson County have been praying for something, maybe they never saw it coming in this shape or form, but I do think it was something that was prayed for.

I beleive this group will benefit so many parents who might be feeling lonely or overwhelmed. I think it will give them a place to go.

Rants of an Exhausted Momma Bear

I'm so emotionally exhausted I could scream. I am frustrated, beaten down, and worn thin. I have little patience these days for ignorance. Maybe it is the pregnancy hormones or maybe I am just flat out tired of it. I am sick of having to explain my child to people who should understand her. I am sick of fighting a constant battle. Do you know how absolutely exhausting it is to be constantly fighting or educating someone for the benefit of your child? Let me tell you, it's no picnic. Sometimes I feel like a broken record. My Lizzybug loves to ask "Why?" I am constantly answering that question in this house. I often feel like I do the same for adults. I answer the same questions, tell the same stories and, explain the ins and outs over and over and over again. It never ends.

I will continue to stand up for my daughter and others like her. As I stated in my last blog post, I truly believe that I have a God given mission. I will do everything in my power to see that my mission is carried through effectively. If there are certain people who disagree, cause friction, or have a problem with it they can feel free to remove themselves. I am to a point where I don't care. I have very little patience for those who choose to be ignorant and uneducated.

This is my autism mom rant for the night. I am mad and exhausted. Looking forward to locking my family away from the world tomorrow. If only it was something I could do more often.

A Mission

At a young ago I was around special needs children due to my aunt's occupation. I loved to help her decorate her classroom, cut out things that were laminated, and I loved to watch her work. She was (and still is) an inspiration to me of someone who loves special needs children, and goes out of her way daily to help them. I know that she spends countless hours preparing lesson plans and activities for these kids.
As I got a little older, I felt called to teach ASD children dance. I began doing research on the benefits. Most of all a deep love for those on the spectrum was instilled in me.
Then one day, my own child was diagnosed with autism spectrum disorder. From the moment we received the diagnosis, I knew my Heavenly Father had a greater plan for me. I knew that he wanted me to do something with this. Until recently, I wasn't sure what. I'm still not sure exactly where this will go, but what I do know is that I am trying to put some resources in my community. I want to see play and support groups. I want to see a safe place for parents to go when they need to vent. I want a place to share tears, fears, and success. A place for parents of special needs kids to not feel afraid! That's what I want. That is my goal. I hope that what I have in the works (with the help of a new a friend) will make a difference. I'm excited to update on this over the coming months. I'm so grateful that my Heavenly Father gave me the examples and experiences early on to prepare me for this mission. He knew all along that I would need them. He knew the greater plan.

Little Sisters are awesome

One thing is certain, our Butterfly knows what her sister needs. On Sunday, we had a family get together in our home. Before it started 2 of the cousins showed up. Naturally they wanted to play with Lizzybug. She wanted to be alone, and went into her sister's room. Butterfly literally stood guard in front of the door and informed the cousins that Liz needed to be alone. Pretty impressive for a kid that just turned 3.

I am constantly amazed at how Butterfly watches out for her big sister. She knows when to leave her alone, when to pursue play, and when to tell her enough is enough. She unselfishly dedicates time to her sister. 

I do worry that one day it will become too much for her, that she will become frustrated and feel less important. I worry that she will feel as if our lives revolve around Liz's needs. I guess in a way our lives do surround Liz's needs. Our family is in a place right now where we are searching hard for and trying to find a balance there. Although, I feel we are far too early in Bug's therapy for that to be a major concern.

I do have to also give a pat on the back to Lizzybug's cousins. I know that they love her so unconditionally. It is amazing to see them all together. There is such a crazy fun love between them all. I just love it. I know that even now Lizzybug is building a support system for long after I am gone. I am glad she has her sister and her cousins.

A word about strength

A few days ago, I was chatting with a friend of almost 20 years regarding the last few years of my life. They have been filled with challenges, heart ache, and hope. She said, "Are you a diamond or something?" I'm always amazed when people tell me how strong I am. I guess I don't often feel that way.
People don't see me at my weakest. They don't see the anger, the fear, or the tears I cry. I don't always feel strong. Something I have learned about strength is we never really know how strong we are until we are put into a situation that requires us to give our everything. Suddenly, we manage to find strength that we never even knew we possessed. Strength is in each of us, and it is up to us to find it.
Life isn't always easy. My life is the perfect definition of trials. Yet somehow we all have the chance to pull ahead. The chance to embrace the challenges, learn from them, and eventually love them. Perhaps learning to love our trials is the greatest strength.
Learning to accept that my daughter had autism want easy for me. In fact, that topped every trial I had ever faced. I felt so alone and lost. I really wanted to shut myself in my room and sleep for days. Instead I leaned on my faith to find strength. Here I am just over six months later. As a mother, I feel like I have grown tremendously. Sure I still yell sometimes, sure I still make mistakes, but I'm able to better handle myself compared to six months ago. I have yet to shut myself away and sleep for days (even though I have days where that is tempting). I wake up every morning, smile for my daughter, tell her I love her, and I find the strength to fight for her in a world where she is misunderstood.