All content on this website is copyrighted and may not be shared or copied without the author's permission
The AWEnesty of Autism
  • Blog
  • Contact Me
  • About Us
  • AWEnest Advocacy

"Not Right Now, but Later"

2/4/2016

2 Comments

 
Picture
If only I heard those words ten years ago. If only I believed those words ten years ago. If only I tattooed those words backwards on my forehead ten years ago so every time I looked in the mirror those words would not only have hidden my deepening frown line, they would have hidden the fear in my heart from the only person who saw it, me.

But I didn't, because I wanted "now". "Later" felt too late.

I heard those words loud and clear just a few days ago when Ryan got invited to a Super Bowl Party. His first invite by a classmate in almost ten years. To say Ryan was ecstatic is an enormous understatement. He had to fight back the tears when he shoved the invitation in my face! It doesn't matter that when I asked who the invitation was from that Ryan momentarily forget the lovely young girl's name (facial recognition is something Ryan struggles with), what mattered most was that this nice (momentarily nameless) girl handed an invitation to him. Yes, him.

On the Sunday night before the big party, Ryan jumped up on my bed and reminded me where he would be "seven nights from tonight". Then it was my turn to fight back the tears. My beautiful, 125 pound, 14 year old son looked at me, somewhat sheepishly, and asked if I would help him "practice" some things he could talk about with the party guests. I was flabbergasted. For YEARS we have tried to role play, "practice" and rehearse various conversations, what if scenarios and what to expect moments to which Ryan often refused. However, on this night he said, "I don't know what to expect at a Super Bowl Party and I want to be prepared".

After I recovered from the shock and AWE once again that this kid bestows upon me with increasing regularity, I told him there was nothing I would rather do. He then jumped off my bed bounced away and shouted, "not now, but, later". And there it was. Such a simple concept in four short words. Four words that could have saved me such worry and heartache had I only trusted those words for the past decade, had I only trusted him. Because AWEnestly, that is pretty much how this autism journey has been going.

"Not right now, but, later" could truly have been the mantra, the theme, the words to live by for my son. As I watched him happily bounce out of my bedroom a few short nights ago while humming the latest Minecraft music buzzing around in his head, I realized, he has been "saying" those very words for years. I just wasn't listening.

"Now it's time to learn to use the potty" I shouted, screamed, begged and bribed. "Not right now, but, later" was what Ryan was trying to tell me all those years ago when "now" was not the time for him. "Now" his brain was not quite ready to understand the signals his body was telling him which is why it took him longer to toilet train than most kids his age. "Later" worried me though because it felt way past "now", yet, when he was ready, "later" came, just like he knew it would.

"Now, I want you to learn to tie your shoes so you are ready for kindergarten", right after we read this book, practice with this pretend shoe in the book and after your big brother Kyle shows you how he does it. Ryan struggled, became frustrated and chucked the book past my head. "Not right now, but, later", because it didn't matter how cool the book was with the fake shoe on the front or how much he idolized his brother and all his cool abilities, Ryan's fine motor skills weren't on board with all the other kindergartners, so "now" was not the time for shoe tying (or shirt buttoning). "Later" came, later.

"Hey buddy, now I want to hear Ryan talk instead of (insert any character on TV he was scripting non-stop at the time here______). I like Ryan's voice soooo....much better", I cajoled. Ryan went about his latest script in his latest voice as if he hadn't heard my request time and time again. The thing is, that WAS Ryan's voice. He was communicating with me in the only way he knew how and if I would have heard "Not right now, but, later", it would have sounded remarkably like Dora the Explorer, but, I wasn't listening. "Now" I do hear Ryan's voice, along with the latest Minecraft YouTuber he is obsessed with, and no matter who I hear, no matter what is said, I listen.

"Wow! I can barely see your eyes because your hair is so long, we have to go for a haircut now", I whispered in his ear while he was almost asleep so I could live with myself knowing I told him, but, hoping and praying he didn't really hear me because I didn't have to listen to the cries, the worries and the fight to get him in the car until "now" actually meant now. The tears, the cries, the heartbreaking "no, no, no" with every piece of hair that floated to the ground was Ryan's way of telling me, "not right now, but, later". The snip, snip, snip of the scissors was loud in his ears. The pieces of hair falling on his neck felt like shards of glasses poking in his skin. The different comb, the chair that lifted up and spun around, the numerous conversations happening in the salon all were too much for his overloaded sensory system. "Not right now, but, later." And as always, "later" came, with Ryan flopping in the salon chair and barking, "just give me the usual" because now he is prepared, now he knows what to expect, now he is ready.

"Now that you are older, maybe you should wear clothes like a lot of the other middle schoolers", I tried (repeatedly) as Ryan walked out the door in silky track pants that I have such a hard time finding now that he wear men's size pants (apparently men do not wear satin pants to work out in these days). The same clothes day in and day out was Ryan's way of telling me, "Not right now, but, later" because those clothes made him feel comfortable and the predictability of how those clothes felt on his body was one thing he could count on not to change throughout his day. Then one day after a shopping trip from the mall, other words came that I was NOT expecting, beautiful words of self-awareness. "I wish my body wasn't such an 'arsehole' and I could wear different things. I really want to, but, my body won't let me. My brain is highly connected to my sensory system...more than it is for my friends". I was dumbfounded, but, able to recover enough to take in this beautiful moment and remind Ryan of all the things that came "later" for him, when his body was ready.

And just two weeks later, when he felt his body was ready, a request for khaki pants and a declaration that his "brain is stronger" now and ready to try them. "Later" came today as he walked into school wearing American Eagle khaki pants and a brand new Hollister shirt. "Not right now, but, later" on his terms, in his way, when HE was ready, not me. And that is exactly how it has been all along and exactly how it should always be.
​
"Not right now, but, later" has proven true time and time again. "Now" was what I needed, what I wanted, at a time I thought it should be happening. "Later" was what my boy needed, what he wanted and what he was telling me all along. Ryan may have never said those exact words to me until just a few days ago, but, he has been telling me for years. I just hate that it took years for me to hear him, to understand him and to respect his time frame. I hope that one day he forgives me and understand that "not right now, but, later" has rung true on this journey for me as well.

Better late(r) than never, right?

Picture
He walked out the door in a pair of these today looking so handsome. It was not the clothes that made the man, today, the man made the clothes.
2 Comments

Change Sucks. Sometimes. Not Always.

1/6/2016

1 Comment

 
Picture
I'm not a fan of change. I like my comfort zone and keeping things "as is" because I feel comfortable with "as is". I know what to expect from "as is". So, when change comes along and rears its ugly head, "as is" goes out the blankety blank window.

Yeah, change sucks. Sometimes. Not always.

No time is change more expected, more discussed and more debated than at the start of a new year and so I always jump on the change band wagon...for about a week. When the calendar marks the end of one year and the beginning of the next, change is expected. Change is encouraged. We are all suppose to change for the better, thus having a better year than last. So, come January 1st I decide to change too. 

I'm going to change by eating healthier, exercising more, swapping screen time for snooze time, swear less, reduce my incessant need to please people, and decrease my wine intake. Change, change, change. It's no wonder I'm not a fan, change and I, well, we don't jive, so I typically fail miserably.

I continue to eat Captain Crunch cereal for breakfast, binge watch Homeland until the wee hours of the morning, skip the gym (sometimes I just totally forget I thought about going), swear like a truck driver, people please to the point I don't remember what pleases me and beg my husband to stop at Total Wine while traveling. Promise. Fail. Repeat.

​Sigh.

Webster defines changes as "to become different; to become something else". What if this New Years I decide to NOT become different or something else? What if I decide to keep on eating Captain Crunch Cereal for breakfast, forget to go to the gym (time and time again) and keep on talking like a truck driver? What if staying the same isn't so bad (with the exception of all that sugar in Captain Crunch Cereal)? What if I'm resistant to change? What if change is scary or bad? What if something becomes different and I want it to go back to being the same? Can I change it back?

Yeah, change sucks. Sometimes. Not always.

As it turns out, no matter how much Captain Crunch I eat, change comes whether I like it or not. Change often comes when we don't want it to. When we aren't expecting it. When we want nothing more than to continue with status quo, when "as is" seems good enough. It seems that no matter how hard I try to hang on to "what use to be", it quickly becomes, "what was". Especially when it comes to my kids. As I watch them growing up, moving forward, "changing", I dig my heals in, tie a harness around the biggest tree I can find and hold on to "same" as long as I can. Guess what? The tree falls over, the harness snaps and I fall flat on my face, landing in a big pile of change. Yeah, I know, "it's what's suppose to happen", but, it doesn't mean I have to like it.

Change sucks. Sometimes. Not always.

Picture
There was a time when I use to long for change. A time I begged for change. A time I prayed for change. A time when I feared the status quo and "as is" had me freaked out. I desperately wanted things to change, things to become different, even though "different" was precisley the driving force causing me to wait for change to come. And I didn't want to wait for a new year to have change arrive. 

I wanted my son's language to change from scripting to communicating. I wanted his overloaded sensory system to change so his day to day life was easier for him (and yes, selfishly, for the rest of our family). I wanted his lack of desire to connect and make friends to change. I wanted my son's insistance on routine, his fear of change to change. I wanted his diagnosis of autism to change, for him to not have a diagnosis at all which would make all those other changes I wished for no longer necessary. With all this change I bartered and begged for, what really needed to become "different" or to "become something else", was me. 

I needed to change...my understanding, my fear, my ignorance and my awareness. My son didn't need to change, I did. When he was scripting, he was communicating, I just needed to change how I heard him. When his sensory system was overloaded and he was in the throws of a meltdown, I had to change how I viewed the world so I could see his view in order to help him. I had to change my thinking of what a friend was and what a friend needed to be. I had to change my fear of disrupting his routine and find ways to help him cope when the routine had to change. I had to take my worry, my fear, my lack of understanding of autism and change how I viewed this diagnosis and realize that autism did not make my son "become something else", he was and has always been Ryan. I just needed to change how I saw him.

And I did. This time, change did not suck. This time, change was good. This time the status quo needed to be disrupted. "As is" was no longer cutting it and it was hurting my son. This time, I had to "become different" and "become something else". This time, change didn't hurt me, this time, change saved me.

It was my insistance on things being the same...the same as they were for my oldest son, the same as they were for kids in my son's daycare class, the same as they were for my friends' children that caused me to want change for him. And at the time, I believed this change was best...for him. Yes, in some ways those changes may have helped Ryan communicate better, get through the ins and outs of his day better, but, he didn't need to change, I did.

Change sucks. Sometimes. Not always. But, when your heart is in it, really, really in it, you can change, you can "become different" and that difference may change your world and the world of someone you so desperately love.

​Wine and Captain Crunch will not change though. Guilt be damned.

Picture
Thank goodness I changed my heart...and my hairstyle.
1 Comment

Conscious Uncoupling

10/15/2015

0 Comments

 
Picture
We had yet another college visit for my oldest son Kyle this week. As any mother who has been part of this tedious, emotion filled process knows, there is a combination of sadness and joy. Sadness, as you wonder how it's even possible that your little bird is ready to flee the nest, and joy, as you happily anticipate just how far his wings will take him.  

As we stroll along these foreign campus grounds, my mind wanders to scary places like, "Will he do too many tap hits at a kegger and kiss a girl who just ate peanut butter and go into anaphylactic shock?" and happy places like, "Will he find his future wife here...the woman who will give me beautiful grandchildren...many, many years from now?" As my mind races from sadness to joy like an uncoupled railway car, I try not to imagine the emptiness I will feel in our home without Kyle's loud, vibrant voice and presence, a presence that is so similar to my own that it makes my LOL as frequently as it irritates me.

Picture
As I approach this new chapter, I am grateful for every moment leading up to it. I know this is what my purpose has been since the first moment he was placed in my arms and I wondered what in the he** I was suppose to do with this tiny, helpless creature that I knew nothing about. Growing up with four sisters, I had NO idea what I was going to do with a son! I remember looking at Dan within an hour of Kyle's birth, that first time mom terrified frenzy in my eyes, and asking him, "A boy? What will I do with a boy, especially when he is a teenage boy?" Dan assured my freaking out self, "You will figure it out as you go" which was about as reassuring of a statement as, the doctor's "Your body will snap right back in no time" while he examined my parts that I felt certain would never snap again. None of my body parts "snap" anymore (unless you count creaking as snapping), but, I guess I have figured out this mother and son thing over the years. No matter how much I have learned, no matter how much Kyle and I have figured out together, nothing has prepared me for letting him go. 

Putting my own feelings aside, I also worry what Kyle's departure will mean for Ryan and Emma. Kyle has always been the big brother Ryan worships. The brother who looked out for Ryan, taught him to use slang, and showed him what was "cool". Ryan's speech therapist once told me that having Kyle for a big brother transcended anything she could teach him in a classroom as Ryan tried to model and mimic the speech of a brother he loved and emulated. Once in a speech session, the therapist just casually mentioned "one day when Kyle goes to college..." and Ryan became so distraught and inconsolable they had to end the session early. For a child who struggles with change, Kyle heading off to college will be the biggest change he has had to experience since we brought a crying, loud, unpredictable baby sister into his world.

Picture
As for the baby sister, Emma will miss Kyle terribly because he is the brother that connects with her, he is the brother who playfully teases her and loves her with all his heart, he is the brother who holds all three of them together. Like a coupler that holds two rail cars securely together, Kyle has always been the connector that has coupled Ryan and Emma together, keeping them from drifting too far apart. ​Without their coupler, I worry about just how far they will drift.

Ryan and Emma are so different, their rail cars filled with goods that neither are interested in or understands and without Kyle coupling them, I think those goods will become more diverse and less understood thus causing their cars to drift farther and farther apart. In some weird, twisted part of my brain, I have thought, well, maybe uncoupled, Ryan and Emma will bump into each other in a horrific crash causing their goods to spill all over the tracks and getting so intermixed that they will have to find a way to clean the mess up together. In doing so, maybe they will recognize the value of one another's goods and see that there is a way to stay close without the coupler holding them together.

Picture
I understand that with or without autism some siblings just don't connect. There may be no rhyme or reason, but, the connection is just not there. In many ways, I think Ryan has never forgiven Emma for arriving in his world, a world at the age of five he was just starting to slowly understand, and so he does not try to connect. It's hard for Emma to understand so she tries, time and time again, but, I realize that a moment may come when she stops trying to connect, when she see that there is no point crashing a train car against another train car with no coupler in sight to hitch them together.  

Without their coupler, Ryan and Emma may drift even farther apart and as hard as it is for me to accept that, I may have to, without necessarily pointing the finger at autism. Just like the world had to accept Gwyneth Paltrow and Chris Martin uncoupling, I too may have to accept that Ryan and Emma may consciously uncouple and even though "they love each other very much, they will remain seperate". There are no bad guys, no one to blame, just two individuals riding on seperate tracks.

Next fall when Kyle heads off to college, I may be so consumed with my own adjustment to the change in the dynamics of our home that my worries of his departure uncoupling Ryan and Emma, may come much later (after I stop spending 24 hours a day obsessing over peanut butter kisses and tap hits). And perhaps in that time, when I am trying to adjust and uncurl from the fetal position, Ryan and Emma may or may not find a way to connect without Kyle's presence. Only time will tell and as I watch my oldest son, my baby boy, strolling from campus to campus, one thing I do know, I most certainly can not control time.

Along with figuring out this mother son thing over the years, I have also figured out that when it comes to love, kids, and yes, even autism, never say "never". Unless of course it is "NEVER kiss a girl who just ate peanut butter", to your severely allergic son, then "never" definitely applies.

Picture
The coupler...
Picture
keeping them together.
0 Comments
    The Mighty Contributor

       Author

    Picture
    Keeping it real, raw, and AWEnest while laughing, loving and living in our world 
    touched by Autism.
    If you would like to subscribe to this blog ...

    Enter your email address:

    Delivered by FeedBurner

    Definition of Awe:
    "a mixed emotion of
    reverence, respect, dread and wonder inspired by authority, genius, great
    beauty, sublimity or might." Yep, someone should have consulted a mom 
    before
    spelling AWEtism.

    Archives

    December 2017
    November 2017
    October 2017
    September 2017
    August 2017
    July 2017
    June 2017
    May 2017
    April 2017
    March 2017
    February 2017
    January 2017
    December 2016
    November 2016
    October 2016
    September 2016
    August 2016
    July 2016
    June 2016
    May 2016
    April 2016
    March 2016
    February 2016
    January 2016
    December 2015
    November 2015
    October 2015
    September 2015
    August 2015
    July 2015
    June 2015
    May 2015
    April 2015
    March 2015
    February 2015
    January 2015
    December 2014
    November 2014
    October 2014
    September 2014
    August 2014
    July 2014
    June 2014
    May 2014
    April 2014
    March 2014
    February 2014
    January 2014
    December 2013
    November 2013
    October 2013
    September 2013
    August 2013
    July 2013
    June 2013
    May 2013
    April 2013
    March 2013
    February 2013
    January 2013

    Categories

    All
    A Blink Of An Eye
    Acceptance
    Advocates
    Aestivation
    Alone
    ASD
    ASD
    ASD And Disney
    ASD Empathy
    Asd Love
    Atypical
    Austin Powers
    Autism
    Autism Acceptance
    Autism Adults
    Autism And Alone
    Autism And Disney
    Autism And Emotions
    Autism And Fevers
    Autism And Field Trips
    Autism And Friends
    Autism And Homework
    Autism And Hope
    Autism And Lonely
    Autism And Media
    Autism And Police Interaction
    Autism Awareness
    Autism Awareness 2016
    Autism Brothers
    Autism Emotions
    Autism Empathy
    Autism Feelings
    Autism Friends
    Autism Idioms
    Autism Journey
    Autism Lessons
    Autism Love
    Autism Meltdown
    Autism Moms
    Autism Routine
    Autism Routines
    Autism Self Advocacy
    Autism Self-Awareness
    Autism Siblings
    Autism Speaks
    Autism Spectrum Disorders
    Autism Swimming
    Autism Tour Guide
    Autistic Enough
    Awe Inspiring
    Awe-inspiring
    Back To School
    Baseball
    Beach
    Beauty
    Beauty Is In The Eye Of The Beholder
    Big
    Black And White Thinking
    Brady Bunch
    Bravery
    Breaking Bad
    Bridge Over Troubled Water
    Bugs
    Bullying
    Champion
    Change
    Change Of Heart
    Changes
    Chatty Cathy Doll
    Childhood
    Christmas
    Clothes And Autism
    Clueless
    College
    Communicating
    Communication Skills
    Comparing Disabilities
    Confidence
    Conscious Uncoupling
    Creepers
    Criticsm
    Day Of Pampering
    Death And Dying
    Denial
    Diet
    Differences
    Different
    Different Not Less
    Disability
    Disney World
    Donkey
    Donuts
    Dr. Seuss
    Early Bird Gets The Worm
    Eddie Murphy
    Ed Sheeran
    Educators
    Emily Dickinson
    Emoji
    Estivation
    Facebook
    Facial Cues
    Fear Of Santa
    Fears
    Fifty Shades Of Grey
    First
    Flags Of Autism
    Friends
    Gifts
    Groundhog Day
    Growing Up
    Guest Blogger
    Hades
    Halloween
    Happy
    He Is There
    Helicoptoring
    He Loves Me
    He Loves Me Not
    History Of Autism
    Holidays And Autism
    Homecoming
    Homework
    Honesty
    Hope
    Hovering
    Hygiene
    Hygiene Autism
    I Am Sorry
    I Am You
    Idioms
    Include
    Inclusion
    Inside Out
    Instagram
    Invisible
    IPhone
    It Takes A Village
    John Elder Robison
    Judgement
    Julia Muppet
    Kate Upton
    Kisses
    Language
    Left Out
    Legacy Of Autism
    Letter To Me
    Letter To My Son
    Lifeguard
    Limited Diet
    Listen To Your Heart
    Literal Thinking
    Loch Ness Monster
    Loving A Child With Autism
    Matthew McConaughey
    Minecraft
    Minecraft Autism
    Moms
    Mother's Day
    Mothers Day
    Mothers Disabled Children
    Mothers Love
    Mothers Of Children With Autism
    Music
    Musical Gift
    Music Autism
    Myths About Autism
    Neurotribes
    New Clothes
    New Years
    Not Alone
    Not Less
    Parenting
    Peanut Gallery
    People Magazine
    Peter Brady Voice Change
    Pets
    Piano
    Placebo Effect
    Play
    Pointing
    Police
    Pool
    Proud To Stand Out
    Read Across America
    Relief Pitcher
    Remorse
    Risks
    Rituals
    Roar
    Routines
    Same Old Song And Dance
    School
    Scripting
    Sensory
    Sesame Street
    Sharing Interests
    Sharks
    Showers
    Showing
    Shrek
    Siblings
    Singing
    Small Talk
    Social
    Social Circles
    Social Communication Disorder
    Social Media
    Social Skills
    Speech
    Stereotypes
    Steve Silberman
    Stickers
    Summer
    Summer Camps Autism
    Support
    Surfers Healing
    Talk The Talk
    #TBT
    Teacher
    Teachers
    Team
    Temple Grandin
    Thankful
    Thanksgiving
    The AWEnesty Of Autism
    The A Word
    #thedress
    The Jeffersons
    The Old Me
    The Outsiders
    Throwback Thursday
    To Tell Or Not To Tell
    Touch
    Trick Or Treat
    Trying To Understand
    Unexpected
    Vacations And Autism
    Vacations And Autism
    Video Games
    Walk The Walk
    Walter White
    Weather
    Wheaties
    Wine
    Wishes
    Wizard Of Oz
    Words
    World Autism Awareness Day
    Zombies

    RSS Feed

Powered by Create your own unique website with customizable templates.