Saturday, August 22, 2015

The reactions we get when Zoey blasts her music wherever we go



I've gotten used to strangers and Doctors talking to Zoey without her responding back, I know why she doesn't, but they don't!

Zoey has nonverbal autism. She can hear you and I'm pretty positive that she understands you, she is after all still only 3 years old so with her you have 3 year old behavior along with autism...it's really interesting! 

I knew fairly early on that Zoey connected to music, it soothes her, she sings, yes she is nonverbal but she sings. I know, I hear all the time "How is she nonverbal but she can sing?"

I had that same question...

And the answer is simple, she's using a different part of her brain, the part of her brain that responds to music and singing and that is how my child communicates. It's fascinating to watch her! I have many videos of her singing, I sing EVERYTHING to her...cleaning up, getting dressed, eating, diaper changes, anything. You name it I have sung it and she responds to it. 

Music has helped us tremendously in our life. Carrie Underwood taught her to hum along and bring her to her Zen place. Michael Buble sings to her and she knows that she's okay, she's not Lost. Twinkle Twinkle Little Star is her Anthem and she will script it all day long. She is my little star, music runs through her and makes her come alive, I've never seen anything quite like it. 

I know with me that if I hear a song it takes me back to a moment in time and I sing along and I feel great. I enjoy it, music is thereaputic and healing. 

Having a child with nonverbal autism can be challenging, but Zoey makes it okay, I get her. She is the music, she is communicating by songs. She can take my iPhone and navigate through all of my music and she searches out what she wants to listen to...I'm in awe of her when she does this!

We left a neurologist appointment a few months back and she had my phone and was listening to Michael Buble as we left, the Neurologist says "she has good taste!" I laughed and said "she sure does!"

We've been in the grocery store listening to Mary J Blige's "Therapy" with many onlookers watching my child sit in a cart swaying to "When I can go therapy 2 times a day"

My favorite was yesterday. We met with a new Doctor for the first time and Zoey immediately puts on "Demons" by Imagine Dragons. As we sit there listening to the chorus "it's where my demons hide...it's where my demons hide" I listened to this new Doctor say "I love that song!" I laughed and said "yeah Zoey is really into music, it's her thing."

This Doctor started swaying back and forth as we are discussing Zoey's new plan of action and the Doctor stopped talking to me and was singing along with Zoey and said "she makes me wanna dance!"

Okay...out of ALL the reactions to Zoey blasting her music, that by far is my favorite. We finished our appointment, walked out to the front desk to set up a follow up in 3 weeks, and the Doctor followed up front, stood behind her staff and said "Do you hear her, did she play her music for you?"

Zoey was sitting in her stroller listening to "you are my sunshine" and I was a proud Mama because my child with nonverbal autism had communicated by way of music and made someone's day! 

Wednesday, August 19, 2015

Remember to breathe in and out





"Good Days and Bad Days"

"Breathe in and out"

"One day at a time" 

"It could be so much worse"

" I don't know how you do it?"

I've heard these sayings and I've said these sayings, but there are days when I want to say 

"It's a bad day, I can't even catch my breath to breathe, it's hard when it's everyday, not just one day, yeah it could be worse, but that doesn't mean that it doesn't just plain ole suck, and I do it because these are my children, how could I not do it.

Raising a child with special needs is difficult, I'm not going to lie and say it's easy because it's not. Raising a child that is Typical with an Atypical sibling is even harder, I know first hand. 

* You try and give enough love and attention to both children and you still feel like you haven't given enough. You cry for your typical child because she or he feels left out or not loved as much or not given enough of your time. You also cry for you Atypical child because you can't ease his or hers frustration like you can so quickly with your Typical child. You feel like you are failing them both!

* You try and give your spouse enough of your time so that he or she feels loved, appreciated, and wanted. You often hear from your spouse "Do you still love me?" and then you argue about how both of you work so hard and start to compare how much harder the other one works, and in the end you settle and agree that you both work hard and that you are  both stressed out and you didn't really mean to argue or fight...and yes "I still love you!"

* You put your needs last because the guilt of actually doing something for yourself eats away at you so much so that you can't possibly do for you until you have met all the needs and wants of your children and spouse. You become physically, emotionally, and mentally exhausted. But you keep on going and doing because there is no alternative. 

* You think and feel things differently than if you had just had 2 Typical children, you try not to treat them differently but they are different. You're happy that one child can color and draw and ride a bike, use the potty by herself and talk so much that you have to say to that child "I know I heard you 3 times silly girl." And you're sad that your other child can't even tell you that she's hungry, hurt, and sad...she can't ride a bike, she's not potty trained, and you hang on waiting impatiently for her to say just ONE word and when you hear it you are elated and you cheer and clap knowing it may be the one and only time you hear it. 

* You think about these 2 children and what their future holds and you cry. You have one child that you can see living independently and being in love and having children of her own, working hard for her money and hopefully happy. Then you pray that the same can happen for your other child, your Atypical child. Will she ever live independently, will she find love and have children, a job and hopefully be happy. 

* You and your spouse learn different ways to do things for each child and sometimes that means that one of us stays home with one child and the other gets to go play mini golf with the other child, and you think to yourself " I suck at mini golf anyway!" It at least helps take the sting out of not being able to do things together as a family. 

* You and your spouse soon realize that being a special needs parent isn't fun, it isn't easy, you are hanging on by a thread wondering if you are even doing it right, scared that you are screwing it up and not fully equipped to handle the job and you are nothing more than just big failures. You don't like to explain to other people why you can't go do things, and why you can't bring your child to a busy crowded place, even though they think she would love it...you don't want to get into it, because they don't get it and you don't want to make them get it and have their pity...you don't want that at all! 

So

"Good Days and Bad Days"

"Breathe in and out"

"One day at a time"

"It could be much worse"

"I don't know how you do it?"

You are a special needs parent, you are a parent, you are a spouse, and you are human. 
You have been given a Special life and a Special family and all you want is to not mess it up! 

With that being said "Tomorrow is a new day!"


Monday, August 10, 2015

What happens to her if something happens to me?




Getting any diagnosis makes you think, those thoughts that are hidden so far in the back of your mind, well they quickly jump to the front of the line in your mind. It's all you think about, you try to stop thinking about them, but like an anxious teenager waiting in line for a roller coaster, they skip to get closer to the front of the line.

After our youngest daughter Zoey was diagnosed with Autism, Dyspraxia of Speech, Sensory Processing Disorder, and OCD, well that anxious teenager cut and was right in the front of the line. 

What was so important, to have to cut all other thoughts to be front and center and be the first in line in my mind...."What happens to her if something happens to me?"

I'm her Mother and now her caretaker, her future is still yet unknown. We don't know how or if she will ever be able to live independently, and it terrifies me. Who will take care of her if something happens to me, who will care for her when I'm gone? 

I'm not going to lie, it is all I think about. It is front and center in my mind and it gets more and more anxious as time goes on. 

I'm not just Zoey's Mom journaling her story and success, I'm a Mom that is going through my own life with struggles of my own. 

I'm starting a new journey in my life, well I actually started in February. With the many health problems I have, I consulted with my Doctor back in February and I have been taking classes and getting insurance and paperwork finalized, So that I can have a medically necessary surgery to be healthy and be around a long time for not just Zoey, but for my whole family. This is one of the hardest things I will ever do and it is a complete lifestyle change...but I'm ready! 

At the end of August, I'm going in for a Sleeve Gastrectomy. Yes, Bariatric Surgery. It is considered medically necessary due to my sleep apnea, high blood pressure, and being obese. 

I'm fighting so hard to make sure that Zoey is getting all of the therapies and seeing all the Doctor's and Professionals that she needs to be happy and healthy, it made me reevaluate my own life. I don't want to have to wonder "What will happen to her when I'm gone?" So now I can speak up and tell that anxious thought "Please go back to the end of the line, no cutting!"

I'm taking the steps to make sure that I'm happy, healthy, and around for a long time. 


Thursday, August 6, 2015

5 ways autism has changed my life for the better




How having a child with special needs changed MY life for the better


1. When our daughter was diagnosed with Autism last August, I changed. I became someone that I never thought I'd be and someone that I would have admired, respected, and looked up to. I found my strength and my voice, because my daughter had no voice, she can't fight for herself, and so I became her fighter and her voice.

2. I have learned so much about Autism and therapies and Zoey's world that I'm not trying to change her world, I'm trying to learn how to be a part of her world. She is Amazing and inspires me daily.

3. I know that I have a right to be heard and that my child has the right to services and that I can say "No" if something is not working for her. She's made me fearless. 

4. I now truly know what unconditional love is. My child is a gift, how I got so lucky...I don't know. I get to see the magic of Zoey everyday and I am proud to be her Mom. 

5. I'm not a quitter, I will NEVER give up on hope, faith, and love for this child...she's made me stronger, better, louder, grateful, and proud 

Yes, Autism has changed my life and yes for the better. I am THAT person, I'm her person! We are all different not less. I'm not just a Wife and a Mom who suffers from Mental illness, I am a Mom, Wife, and now an Advocate who happens to have Mental illness with a daughter who happens to have Autism.  I am raising my true super hero...she hasn't just changed my life, she's saved my life!