Hey There Mr. Tin Man

Everyone knows I adore Miranda Lambert. My husband bought me my very first concert tickets to see her perform during Cheyenne Frontier days. He didn’t know it
in March when he bought the tickets, the concert would be during a very difficult time in our life and it would be a saving grace for me.

Mr. Tin Man is one of her Number one hits and it speaks volumes to me, but not for the same reason it speaks to most. My husband didn’t cheat on me, I wasn’t going through a breakup, nope I am a special Needs mama to a son with an extremely rare genetic mutation.

There are only 386 Children that we know of that have SynGap1. Raylan has uncontrolled epilepsy, severe developmental delays, hypotonia (low muscle tone)

Raylan has had many hospital stays, including a multi-day stay prior to the Miranda Lambert concert. During the week prior to seeing Miranda in concert I watched my son in pain and every day.

He was cooped up in a hospital for 4 days. A team of nurses plus me held him down every morning for needle pokes so he could have his blood drawn. I watched him struggle to eat and drink for 7 days and still continuing to have seizures.

By time Miranda lambert’s concert night came, I was burnt out. I was tired of watching my baby struggle and be completely helpless. I wanted to take his pain away. The moment she began to sing Tin Man tears streamed down my cheeks, because every bit of emotion I had experienced the past week was right there in that moment.

Mr. Tin man is such an amazing song and to hear it live during one of the most difficult times as a mother I had ever experienced meant the world to me.

“Hey there Mr. Tin man.

You don’t know how lucky you are

you shouldn’t spend your Whole life

wish ring for something bound to fall apart

Every time you’re feeling empty

Belter thank your lucky stars

If you ever-felt one breaking

You’d never want a heart.”

Mr. Tin Man I’d have to Agree with Miranda. In all my years I have had plenty of sadness and pain, but trust me

If you ever felt the pain of restraining your child so the doctors can help them you would Never want a heart.

Mr. Tin-man if you ever looked into your child’s eyes and saw pain you couldn’t take away, you’d never want a heart.

Mr. Tin man if you ever felt the pain I feel as

a mother every time my child was crying you’d

never want a heart.

Mr. Tin man if you ever felt the pain that goes with a parents watching their child suffer you’d never want a heart. It would shatter in pieces

As a parent the heartbreak I feel for my children is the worst heartbreak I can ever imagine multiplied by the hundreds.

As Miranda says. You’d better count your lucky stars. I’ll take your Armor and can have my heart.

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An open letter to Justin Timberlake

Dear Justin,

My name is Mickey. I am a mother of 4 and I grew up in the era of N’sync and Backstreet Boys. I’m sorry you weren’t my number one pick then, but now you are my hero. Not because of the boyish charm of n’sync or your ongoing success as an individual, but because you’ve helped me discover a new world without even knowing.

This is Raylan, he is almost 4 years old. Raylan is a very special sweet boy and he never speaks a word. He is non verbal autistic, epileptic, and has SYNGAP1 intellectual disability.

Since Raylan is non verbal we have been working on a form of communication for 2.5 years. Sign language was not successful because not have the motor skills or the strength in his hand to develop the signs. So he communicates using PECs and we had given up on sign. We as a family began to focus on him using pictures for communication. We still signed as we spoke feeling that maybe just maybe one day he’d be able to understand and use sign himself.

Raylan discovered the movie Trolls in July of 2018 and it is now December 2018 and our family has every word memorized. He loves Trolls! So much to the point he used his very FIRST sign to ask for “more Trolls”. Raylan will hand you the remote and sign “more” to ask that you throw on Trolls for him. This is huge as we have NEVER seen him this enthusiastic about anything besides playing in water.

Sometimes Raylan struggles to sleep at night so him and I will sit in the rocking chair watching Trolls. It soothes him in ways that we can’t. The bright colors and cheery music have brought my little boy to life and brought expressions to his face we have never seen before.

He loves the scene where King Gristle is working out and the trolls are being chased. He laughs and jumps all through that scene.

My favorite is his reaction when Branch sings to Poppy. He pays attention very intently. Raylan sees the raw emotion in that scene and you can see it in his eyes, he understands.

Thank you and the entire Trolls cast for giving our boy something to soothe and make his day

-Mickey, proud mama of this sweet boy!

“Uniquely Human- A Different Way of Seeing Autism” Book Review

Uniquely Human: A Different Way of Seeing Autism

By Barry M Prizant PhD

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I set out to find answers on google and found nothing, but frustration. My son was diagnosed with ASD (Autism Spectrum Disorder) in Fall of 2017. Although I knew the diagnosis was coming, I was still at a loss for what was yet to come.

“How do I make sure we are doing everything we can to make sure he succeeds?” This question was always afloat in my mind. January of 2018, Raylan started school in hopes to seek out the early intervention he was in dire need of. Shortly after, Raylan started school, a parent recommended this book to me. The parent raved about how it had made things so much clearer and helped them understand more. I was reluctant to really dive in and read it. I was still adjusting to my son’s new diagnosis, our life with IEP’s, and our other 3 children. I was not ready to read a book that would blatantly tell me something I already knew.

However, once I picked it up I could not put it down. I started to read it as a paperback. When we had to travel to IL, as I drove I listened to every single chapter by audiobooks. On the return trip, I listened to every single chapter a second time. I put book marks in my paperback and reread the sections I had book marked in the Audible book. This book changed my life, my thought process, and made me even more proud to be a mom of a child with Autism.

There’s one topic the author covers in this book which made me take a step back… as ever work with your child. The author mentions that we are the professionals when it comes to our children, that it is perfectly normal for us to stand up for them and say, “no” when we deem necessary. This was something I struggled with. I as a mama am an advocate for my kids. I will argue, stand up, and not back down until I am certain my kids are taken care of in the way that is right. When it came to Raylan’s, medical I would argue tooth and nail when I knew what was right and wrong. I fired a couple therapists! I was that mama who rattled everyone’s cage if I thought they were treating Raylan, wrong. Some people would say that is not OK, because doctors/therapist are the professionals, but not this author. And not I. In Uniquely Human, there is an entire chapter about parents being the professional when it comes to their children. This was affirming to me that all those times I didn’t back down, I was doing the right thing. Many things that the author wrote about in Uniquely Human, is incredibly eye opening and made complete sense to me. Raylan is indeed Uniquely Human. The title of this book was perfect!

While reading this book it was more than I ever could have expected. The author is well versed and knowledgeable in ASD, he writes from a professional as well as a personal viewpoint. He has a personal connection when he writes with individuals with ASD such as Temple Grandin. He shares stories of parents and teachers who work with ASD, making it easy for the reader to connect on a personal level. Many instances written about in the book, I have experienced myself.

If you have a child with Autism, are working with children that have Autism or you are just interested in learning about kids with Autism, I highly recommend this book. It was eye opening for me and I hope it will be for you.

– Mickey

Normal

Hey mama, I see you hiding inside yourself in the corner. You’re struggling and you’re fighting back tears. Its ok, you’re not alone.

Hey mama, today you celebrate a dear child’s birthday with a friend. Secretly you step away to hide your tears. Mama I have done it too. You cry silently as you watch other children surpass yours. You celebrate with them, but you cry inside because it feels sometimes your baby will never have a normal life. You cry secretly because your baby doesn’t understand opening presents. You cry because you have to explain to children why your little one doesn’t want to play or hold hands. Mama you are not alone.

I cry oh so often. I fill with tears when I hear 3 year old say thank you or I love you.

There is a lump in your throat, a boulder on your chest, and a break in your heart. I’ve been there. Some days are better than others. Some days you want to shut everyone out so your tears are hidden, it’s just easier that way.

You can’t explain it. You are so happy to see other children grow and bloom, but at the same time it makes you cry.

We want the best for our children. We want to be sure that they have a bright future. And it can become an exhausting fight. Every day there is a hill climb. Sometimes it feels like you’ll never reach the top. But mama its ok.

Your precious child will be a world changer. Your child is a gift that never looses shine.
They may not say I love you, but they’ll give you the best hugs and maybe kisses.
They may not understand the excitement of giving presents, but they know how to light up a room when their favorite song comes on. They have talents that others can only dream of. When he plays the piano I cry a different kind of tears.

Struggling with hurdles will never change. Tears will be triggered even with the smallest of events. Its ok mama.

Its ok to admit things are hard. It’s ok to just breath or step away when you needed to. There are going to be so many times you just carry the weight of being a special momma to a special kid.

You’re not alone.

But remember this

Normal is a dryer setting.

– Mickey

PECS Friends and family 101

PECS is a form of communication taught to individuals who are not able to use traditional forms of communication. In this video I chat about how we use it, pros and cons, ETC.

After researching, I have decided to become PECS certified.

https://www.gofundme.com/help-me-become-pecs-certyfied&rcid=r01-153573707632-86ee4c51d7aa47b9&pc=ot_co_campmgmt_w

Kickin’ It

Cheyenne has been a blessing for us. Such amazing programs and resources for Autism and special needs. Since Raylan started school in January at STRIDE learning center, we have been more involved with programs that will help our family grow.

Tonight was the beginning probably one of my favorite programs so far, Adaptive Soccer. Adaptive soccer is geared for children with disabilities. This particular program was started about 25 years ago in Cheyenne by a group of Children’s OT and PT therapist and is FREE! Each kid receives an Adidas Soccer jersey and a water bottle. Each child is paired with a buddy that will help them with learning soccer. Each buddy is picked for kids based on that child’s particular need. Some of the buddy volunteers are high schoolers and some are therapist. There are different groups for teams based on needs and age. But the absolute best part about this program is siblings are included in the soccer practices and games. Some times it can be hard on our other kids that Raylan requires so much more attention and care, so having a program that includes them and can help teach them the importance of teaching and accepting is amazing!

Raylan’s buddy was a perfect match! He was paired with a pediatric physical therapist. Raylan struggles with balance and coordination. I told her of his struggles and his battle with tremors ants she understood my concerns. She then assured me that no matter how much “soccer” he really does or learns, he still will benefit from playing on the field.

My kid’s ran all over that field and had so much fun! I cannot wait until next weeks!

3AM Bubbles

As I laid in my bed half asleep, he put a cup in my hand. Being only a quarter awake I crawled out of bed as he took me by the hand.

This morning was probably the 1000th time Raylan woke up at 3 AM just ready to take on life.

As I laid in my bed half asleep, he put a cup in my hand. Being only a quarter awake I crawled out of bed as he took me by the hand. He led me into the kitchen and showed me the fridge. Unwillingly I opened the fridge and his little face lit up as I grabbed the milk and he burst with giggles. I melted.

Here I am exhausted and I should be frustrated, but by now I am used to it. I hand him the glass of milk so he takes a sip. As I turned around to put the jug back in the fridge I hear the sound of liquid spilling out. Raylan poured all the milk down the kitchen sink. He decided thats not what he wanted, he wants the juice on the counter. I sighed and put just a little juice in his cup. He laughed and began to try and jump with excitement. Little man really wanted that juice.

He then began to blow bubbles into his cup which was exciting for both him and I. Yes its 3 am, I’m absolutely tired, why in the world am I excited about the fact he is making noises or a mess by blowing bubbles into his cup?

Here’s why. When Raylan starts to form new sounds with his lips that is cause for celebration. Every little move that his lips and mouth learn, helps us in the uphill battle of him one day speaking.

Raylan is 3 1/2 and has never said a word audibly and has never babbled. We’ve yet to hear what his little voice sounds like. He doesn’t mimic nor try to form words, he is just quiet. When Raylan needs something, he often leads us to what he needs. Recently he started to bring you a cup if he is thirsty.

So yes bubbles at 3 AM was exciting and I never even tried to discourage it. I just laughed with him. We smiled and he requested more juice. I quietly gave it to him and waited. He once again began to blow bubbles. That sensation of moving his lips is an exciting accomplishment. So I just sit back and wait until he’s done. He hands me his cup in request for more, but this time I gave him water. He dumped it down the drain. I grabbed his little hand and we both walked out of the kitchen. He wasn’t quiet ready for bed again so we played a bit longer. I should be begging him to let me sleep, but I would wake up all over again just to see that giggle after he blows bubbles in his cup.

– Mickey