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

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

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

Dear Autism

Dear Autism,
It’s one AM and our boy is upset. Crying, he is struggling to tell us what he needs. Tonight we are playing twenty questions, but in this version we have to guess the answers to these questions. Does your belly hurt? Do you want a drink? Does your head hurt? Do you need to be rocked? Are you wet? Are you hungry? Do you want a bath? All these questions and the only response we receive is tear filled and cries of frustration.

Mommy has given him my phone so he can play, but it only works for a moment. So mommy turns on the nursery rhymes and that helps a bit, but we are still fighting an inner battle.

He grabs my hand and leads me to rub his head, so I think his head hurts. I give him ibuprofen just in case that is what is wrong. Now I’ve waited patiently for it to kick in, but we are back at square one although it should’ve started to work by now.

He climbs in my lap and I start to pat his back and it makes him even more angry, he doesn’t want to be touched. He wants to walk around now. So momma walks the hallway and shuts the bedroom doors one by one. Now he can roam without waking anyone else. But that is not what he wants either.

I have tried everything I know to try and with no luck. I am begging you to please let me in his world. His world is sacred and I promise not to damage it. I won’t tear anything down, I will help him build. I won’t stain it, but only help paint it brighter. I swear I won’t burn down the beauty within, but I will invest in it and help it grow. If only you could unlock the doors to let me in even if its just for a moment, you will see I mean his world no harm. I just want to see how he sees, hear what he hears, and speak his language. Please just let me in, let me help soothe his upset heart. Let me talk with him, let him tell me what he needs. Please Autism I beg you to let me in, unlock the doors.

If you won’t let me in now I will understand, you’re just guarding his doors until you find we are worthy to be more than onlookers and become a part of his very special world. But you better believe tomorrow I will be back again begging and pleading for you to unlock the doors let us in.

We will not give up on him. We will continue to learn all we can so we can help him grow. We will continue to play with him and love on him. No matter what the challenge may be we will push together to help him over come it. We will help him climb all mountains he’s faced with. The parts he cannot climb we will put him on our back and we will carry him.

And you will see our resiliency is untouchable. Will it be then that you unlock the door? Will you let us in when we have proven our selves worthy to be in his world. We will rise to the challenge you’ll see.

Sincerely,
Momma

#autismstrong #raylansclimb #autismawareness #differentnotless #autismworld