Having Another Baby

I have thought about this post for the last 11 weeks. I have thought about how to explain my thoughts and feelings. Yet, I am still unsure of how to explain everything.

We knew up front that the risk of another child having autism would be incredibly high. One thought that came to my mind was how different my life would be if we had had an earlier diagnosis, one that would have made us decide to not have a second child. I think our life would be pretty empty. Our Butterfly brings so much joy to our family. With that thought constantly on my mind, I was comfortable with the decision to have a third.

So here we are. Yes, I do still feel scared about it sometimes, but I also know that we now know what to look for as well as what resources are available in our area. We are familiar with the teachers and staff at the district preschool, and we have a fabulous doctor. Not to mention the education that both my husband and I have gained.

Only time will tell. I am just grateful for the precious spirit Heavenly Father has sent us. We are looking forward to having a third baby around.

6 Months Into Our Journey

This post is about me. This post is about how I over came the greatest obstacle put before me. It is about how I embraced it, how I have learned to love it. Most of all it is about how I wouldn't change it for the world.

6 months ago I sat on a couch, clinging tight to my husband's hand while a therapist told us that our Lizzybug had autism. At the time it was tragic. It felt like I had lost my child. I was confused and over whelmed. I did not know where to go from there. It was if a door had been slammed in my face, and there was no where else to turn.

Over the first few weeks and months, I was mad with God. How could he do this to us? Why did my daughter have to suffer? Those were the thoughts that went through my mind. I spent hours on my knees begging for answers. I begged for peace.

Occupational Therapy ended up being an answer to my prayers. During those first sessions, I watched my daughter bloom. I began to realize that I had not lost her, I had never really known her. Those sessions allowed me to peak into her mind. I watched her determination, I watched her tackle things that were really hard for her. I finally knew my Lizzybug!

Because of ASD I have learned some things about myself as well. I have learned I have more strength than I thought possible. I have found patience that I did not even know I had. I have found a faith in God that I never knew possible.

I wouldn't trade the last 6 months for anything. They have been a beautiful blessing. I am anxious to see what my little Lizzybug will achieve in her future. I am excited to be a voice for her, and to help her succeed in life.

Ignorance

I was prepared to write a post about how exhausted I was. About how I woke up at 3:00 with my kid, and was cleaning up spilt milk by 4:30. Instead I want to address ignorance. It has been everywhere for me today. Some days it slips in and other days it tears at my heart. Sometimes it is a look from a stranger, others it is a family member or friend. 

I know that many times when family or friends are ignorant about the situation they are more than likely trying to be supportive, but that does not stop the sting of the words. I live everyday trying to explain my child to teachers, friends, family, and strangers. I put up with dirty looks in the store when my child throws a fit, or comments when my daughter's auditory processing disorder shows face and she says "No." Honestly, it exhausting to explain her. If our society were more accepting I would not have to do so.

Our society needs to do away with the idea that every screaming child is spoiled, or that every misbehaving kid needs to be punished more. I hear it all the time. ''Aren't you going to do something about that?" Like I am supposed to punish my kid because her mind takes longer to process what I am saying. I see their stunned faces when she yells, "No!" Yet no matter how many times I explain that she just needs a minute to process things I get the same reaction again and again from people. 

I realize this blog might step on a few toes, but mine have been smashed into the ground and rubbed there. 

Things to not do/say to an ASD parent

1 "Don't you discipline them?"

2 "Aren't you going to do something about that?"

3 Do not point out everything the child does that is "normal."

4 Do not preach to me about "labeling" my child. 

5 "She sounds just like you."

6 '' I can't believe you let her talk to you like that!"

7 "Maybe you should change her diet."

8 Do not act like an expert unless you are another ASD parent or a professional. Then I would love to hear    your advice

That is just a few things, right off the top of my head. Give me another hour and I am sure the list would be longer. So what can you do/say to be helpful?

1 "Let me know if you ever need a break. I'd be glad to help." 

2 "Is her therapy going well? I am noticing a lot of improvement."

3 "How are things at the school?"

4 Educate yourself.

5 Offer a listening ear.

6 Offer a shoulder to cry on.

7 Bring brownies!

8 Smile at the lady with the tantruming child. Tell her she's a good mom. She probably needs to hear it.

I admit to once being a young mom in Wal-Mart who thought people should control their kids. It is funny how something can really humble you.  There are days when I have to shut out the rest of the world, and their negative opinions toward my child. On those days I just let the phone ring, ignore text messages, and shut my family away. Because in this house we have acceptance. My daughter can be herself without a negative look or comment. She can tantrum, and know that her parents will still love her when it's over. 

So please be kinder to the mom in the store. Please by kinder to friends and neighbors. Show more compassion towards your family members.

My Dancing Bug

Our journey first began at the district preschool. I thought Liz just had a minor speech delay. At the same time she was having ear infections. The first she had  experinced since she was 6 months old. Do to insurance issues at the time we were self paying for all of her treatment. We were told that she needed tubes, but we could not afford the procedure. Finally, the insurance issues cleared and so did Bug's ears. Yet she still failed a tympanometry test on her ears, Thus the preschool continued to reject her claming there was fluid on her ears (despite the doctor saying there was not) and that was affecting the speech. After a lot of fighting we finallygot her into the preschool. It was 6 months of fighting to be exact.

It was during those 6 months that I knew I had to do something. I watched my daughter slip further and further away from me. I watched her struggle to communicate. She was not a happy child. I went back to my roots. I was a dancer. I loved to dance and had orginally gone to college to be a dance educator. It had influenced (and still continues to influence)  the person I had become. My gut screamed at me to enroll Liz in dance.

I began calling every dance studio in the area. Call after call told me that classes for her age group were full. It was October, so I had kinda expected that. Other phone calls were never returned. My last call was to a smaller studio in the area. My call went to the answrring machine, and I left a message. I hinestly did not expect a call back as many of the other studios had not called back, but less than 5 minutes later my phone rang. We took Liz to dance class that night and she fell in love with it. It became a form of therapy for her, a place where she could be just another kid. 

When Liz is in a dance class she doesn't have to talk. Kids don't notice that she is different. She is able to be her own indvidual person. I have watched my daughter go from a girl held up in her own little closet to a girl ready to take on the world. I love what dance has done for her. Some days may be hard and we may or may not make it out the door to dance, but the weeks where she does attend, I see a totally different child.

At this studio, we have been blessed with an amazing dance family. The support I have recieved throughout this journey from my felllow dance moms has been wonderful. Lizzybug's dance teacher has been so great,. I don't think I can thank her enough for everything she has done for her. She has truly helped us gain our daughter back. Thank you, Charity.

This thanksgiving I am truly grateful for dance and the impact it has had on my life. It continues to weave in and out of my life leaving only happy moments. I am grateful for the women who inspired me to dance. The women who taught me all that I know. They mentored me and helped me to discover who I truly was through the art of dancing. Thank you Mrs. Heather and Mrs. Jeanna. And a thank you to my mom for paying for it, driving me to it, and sitting through it. 

It is truly funny how life turns out. When I graduated high school my career plan was to teach ASD kids dance. I never thought I would be the mom to one. I am also thankful for that early inspiration fron a loving Heavenly Father. Although my career goal changed to mom I have been able to utilize all the knowledge and homework I gained several years ago. Life truly does happen the way it is meant to. 

To The Highschool Students

This blog is to every teenager who has ever said, "My kids will never act like that." Or to the one who has said "I will never..." Oh just you wait Mr. and Miss Young Mind because you will. You can sit there and shake your head as I haul 2 misbehaving children out of a play, and say the "I will nevers" all you want, but my dear you will. You will do all those things you said you never would.

Oh teenagers, life is so simple now (although you don't think so), but one day you will find yourself being a tired mom who no longer cares if her kids are wearing socks. You will leave your house early not having showered. You will throw a coat on and haul your kid out to the bus braless. You will be so bedraggled and tired some days that you won’t leave your couch, and you hand your kids the remote. There will be days where all you want to do is cry. There will be days where you don’t think you can do it anymore. Parenting is hard!

But dear teenager there will be times when you look at your child and realize you would not change it for the world. It might not be the parental paradise that you imagined, but it will be its own kind of paradise. You will find joy in the little things. You will laugh as your child tries to catch butterflies. You will cry when your autistic daughter comes home and is actually able to tell you what she did at school. You will watch their first dance recital. You will cry as the bus takes them away for their very first day of school. You will watch your child grow and succeed, and those little moments are so worth it.

So teenagers, before you throw the dirty looks at a tired mom or make a smart remark under your breath, remember in ten years it will be you. One day you will be the tired mom hauling a child out of an event. I will see you, and I will smile. Maybe I will even help you to the car, and tell you how amazing you are. Because you are just that, amazing. 

Fighting

Almost exactly a year ago I began fighting for Lizzybug. I knew that she had a speech delay, but the district preschool wouldn't take her because they believed it was her ears (she was having ear infections at the time). I knew it was much more. So I fought from September 2012 until March 2013. Finally, they realized the problem and took her. Too bad all those months were wasted and you can't make up for lost time.

It seems like every small request I make is a battle. Why is it so hard for people to just listen to me? I know my daughter, and I know what she needs.  Today I had to walk out of an IEP meeting. I could no longer trust my emotions. As I walked to my car, I fell to the ground, and I cried. I cried beause I am so tired of the fight. I am tired of an under funded school system. I am tired of under funded resources. Something has to change. That change has to start with parents like me who are fed up.

Because my child is high functioning she slips through the cracks. Because she is high functioning people seem to think that she doesn't need as much help as other kids. I would invite them to come to my home. To live with what I live with on a regular basis. Yes, my child does need help!

It's not even just the school system that has me on edge lately. I can't even find a dentist in our area. In fact, one dentist had the nerve to tell me that they don't see kids with "health problems." I'm afraid that conversation did not end well.

Today I feel angry. I feel frustrated. I feel sad. I feel disappointed. I feel tired. I guess I feel like an autism mom!

Sometimes I get mad

Not mad at my daughter, but mad with the situation, with society, mad with insurance companies,doctors, acquaintances who just don't get it, and my list could go on and on.  Some days I just want to scream and cry because it feels like no one cares or understands. I am learning to take a deep breath and excuse people for their ignorance.
For example, a few weeks ago we took Liz to the GI. I could tell that she didn't have a lot of experience with autism. The first thing she said was, "Are you sure it is really stomach aches and she's not just complaining about something else?" To be fair, she probably did have a point, but I know something more is going on and that was not the question I wanted to hear. It felt like she was not taking us seriously. I left mad.
Other times I get stuck in the "Why us" phase. I may never fully know the answer to that question, but what I can do now is find the blessings in it. I have an amazing daughter who excels in things most kids don't. I never need to turn on the news for a weather report, sending Liz to the window is more than sufficient. She can dance, she can act, she can make me laugh. That is the beauty of autism in our home.
I want to educate people. I want to advocate for these children and adults so that other parents don't have to get mad. I want them to be able to reach out, make one phone call, and suddenly have all the help and resources that they need. I want parents to have sufficient support. I want them to see where their child excels, to see that their child has great potential. Most of all I want to help their children find that potential. I am starting to find a new calling in my life.

Finding Support

After Liz was diagnosed, I felt absolutely overwhelmed. I was given an awesome opportunity to travel to Columbus,Ohio for an Autism Speaks Conference. While there, I discovered so much support. Suddenly, I didn't feel so alone. These were parents who knew what I felt. They knew the challenges that I faced on a daily basis, and most of all they had experience. This was a major turning point for me. I was able to learn about the Autism Treatment Network and the amazing things that they are doing for people.
After my trip to Columbus, I came home and immediately made an appointment with the nurse practitioner in town. She ran several tests and referred us to local therapy, a GI, and the Autism Treatment Network. I am beyond thrilled to finally be moving in the right direction.
I know that through the help of the school, our nurse practitioner, Liz's dance teacher,family, friends, and all those involved in her life she will be able to have great success in life. I didn't realize it but over the last year I have built an awesome support system for her. Sometimes I still feel overwhelmed and wonder what her life will be like, but then I try to remember that we have people around her who love her and want her to be successful.

And So it Begins

I want to start from the beginning. On February 26,2009 my husband and I were blessed with a beautiful baby girl, our Lizzybug. From Day 1 we knew there was something special about her. She was so alert, and she could watch the lights over the hospital bed for hours. There was always something different but beautiful. People were attracted to her and she made them laugh. She was curious and as she began to crawl, she became an explorer. She made my life beautiful. I suddenly realized what it meant to be happy. I found joy in every little smile and every little laugh. As Liz began to grow she met all of her milestones on time (and maybe some a little early).
When she was 20 months old, our Butterfly was born. Life felt perfect. I had 2 beautiful girls and a husband that I loved. Not long after Butterfly was born I began having some concerns about my Lizzybug. I shook them off and convinced myself that everything was fine. She really wasn't that behind in her speech and where she was she would soon catch up.
 When Liz was just past 3 years old things began to snowball. She threw frequent tantrums and began picking at her skin, her speech was behind, and her social skills were lacking. I made excuses and convinced myself that it was due to moving to a new state.
 A few months after our move I admitted there was something wrong and called early intervention. I was forwarded on to the local school district's preschool. To make a long story short it took 4 months for them to accept her. When they described our Lizzybug they simply said that she was a "complex child."
Around this time our pediatrician decided to send us to Kansas City for an Autism Evaluation. In the meantime, I began doing my own research and knew in my gut that we would get an ASD diagnoses. After a 4 month wait we went in for the evaluation. I will never forget hearing the psychologist tell us that our Lizzybug had autism spectrum disorder. No amount of homework and research had prepared me to hear those words. I didn't want to talk to anyone afterwards. I wanted to sit back and fully digest what was said. I wanted a game plan. I was overwhelmed. What do I do now?
It was definitely a day that changed my life. It was just over a month ago, yet it seems like a lifetime. Here I am trying to figure out who my daughter is. What does she think? What does she feel? What does she want or need? I ask myself those questions every single day. I made myself a promise that day. That promise was that anything my Lizzybug wanted to do in life she would achieve. I will not let ASD hold her back, I want her to learn that she has talents because of ASD, and those talents can take her places. I want to help my Lizzybug use her wings.