Against the Ropes

I have learned as a coach and trainer is you have to coach clients past their personal limiters. You have to coach them out of their comfort zones. As a coach you need to listen to their concerns and coach them through.

This is not a comfortable spot for me. I do not like the ongoing battle and the seclusion I feel with being a special needs mom. I don’t like the isolation when I sit in a hospital room full of doctors and nurses and feeling entirely alone. I do not like imobilizing and restraining my defenseless son down to give him an IV. I don’t like being dismissed when I say no blood pressure cuff it’s too much for him. I do not like feeling vulnerable. I loath watching his help me eyes and knowing there’s nothing I could do to take the pain away. BUT I will continue to encourage him in this fight because that is what a Second is for.

The one thing that being a trainer has taught me is you cannot teach clients to push themselves beyond their barriers if you yourself will not push your own barriers.

Clients need to know that as a person I am far from flawless. My children need to know I am not error free. However, I will never teach anyone to give up. There is one thing I strongly believe, we must focus on improving daily and not being perfect. Perfection is an unachievable desire.

But because we have potential to always improve we have potential to grow. Growth can be a painful process. Growth can be terrifying. There may be days where it feels impossible, but don’t give failure a chance.

You gained instead of loosing?

OK let’s reaccess

You ate cake on your friend’s wedding day?

That’s great you enjoyed the moment. Move on

You couldn’t squat as heavy as you wanted?

That’s fantastic now you have another measurable goal to work to.

It is impossible to move forward if you are looking back.

As a person I am consistently getting knocked down, getting slammed against the ropes, but I am relentless.

My goal is to teach my clients that same recoil. To coach them through those mental and physical battles. The moments they feel like they are weak and cannot recover. We can come off those ropes. We can get back up again and again. The one thing we cannot do is surrender.

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.

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

download (15)


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!