aware of different

I learned a lot on how to parent my now 3 year old son Greyson from watching our Applied Behavior Analysis therapists that taught him.Many didn't have kids of their own and were in their 20's- yet- they taught me.

I had no clue what in the hell I was doing. Starting at about 22 months, Greyson could turn on an instant. Left instead of right- green instead of blue-cut horizontally instead of vertically. Complete meltdown. Tantrum City. Not once a day but eleventy hundred times an hour. 

Before we knew Greyson was Autistic, I had no clue how to handle these outbursts... I didn't want to be a parent that spanked- but found myself quickly becoming one after trying everything else. I tried ignoring him... It didn't go away...I tried spanking him and yelling at him... It didn't work...I tried time outs and rewards and everything I could think of... None of it worked. I couldn't explain it to others... 

It's like he's not even listening to me... It seems like he doesn't understand when I tell him no. 

And most people said the same things back... That's kids for you. He's ignoring you. My kids don't listen to me either...

It was completely different though... But I didn't know how to explain it because I didn't know it myself...
So slowly I started to feel like I was going crazy... and felt like everyone else was doing a good job- which was illustrated by the fact that their kids paid attention more often than not... and I was a failure...


ABA Teachers are taught to reward appropriate behavior and ignore and redirect inappropriate behavior-- calmly. I would see Greyson scream at them, hit them (although usually they were able to go in for the block) and fall to the ground...and the Teacher redirected Greyson while remaining completely calm... 

We love all of you ABA Teachers- especially the ones that have taught Grey!!! You make a difference in our Life every single day.


Thank you Erin.  We love you.

They give simple commands as to what Greyson is supposed to do---not what he isn't supposed to do. For example- if Greyson is flapping his hands and zoned out when he is supposed to be paying attention- they say- 

Hands down- instead of don't flap. 

Quiet mouth--instead of No yelling.

They certainly couldn't react like I wanted to and sometimes had so many times...

GREYSON!!! SIT YOUR BUTT DOWN THIS INSTANT- yelled while grinding teeth...We do NOT HIT!!! We DO NOT SCREAM...(And here- let me hit you on the butt to illustrate the fact that we don't hit...and let me scream in your face to show you that you are not allowed to scream at me)... 

And I realized I needed to start acting more like his Teachers and less like an ego bruised, overwhelmed Mother...


And it started to work...and I felt and looked so much less crazy which was such a relief. There are still many times I'm a regular old Mom and have beautiful yelling outbursts of my own...But the majority of the time I keep calm and I extract the emotional side of it...When you spend much of your day correcting your child with behavior issues- it's so much sweeter to be able to be calm about it...



Better for him and for me...

I had a sweet and patient Mom write to me about an interaction her daughter had... I'm sharing the beginning of her letter with her permission.

While in the car earlier, Sally was telling me about this "mean" girl who ran past her in the library to get the book that Sally wanted. I asked her which girl in her class was "mean". She told me that is was a girl who only goes to "special area" with her class. Light bulb moment for me....I know from teaching that kids who only go to special area with a class are probably in a self contained room the rest of the day. So I told her that that little girl must have "superpowers". Well that was completely intriguing to her! Now, I have this incredible teaching moment for her and I got it mostly right but I need you to help me explain to her better about "superpowers' with out using that defining language that I want to avoid. I told her that girl is EXTRA special....she got that because we say "all kids are special" and they are. I explained to her that she could not help her behavior and she needs to be extra nice and understanding to her. I racked my brain, wishing I could go straight to your blog to help me explain this to her without making this girl seem different or scary. What is the best way to teach our kids about superpowers? 


Man- reading that letter made my heart hurt with the love I felt pouring out from this Mom.. and the hope that these conversations are going on all over the World...and what a great question...It really got me thinking...


I am a big fan of shining a light on it. Whatever IT is in your life. When people know IT- IT ain't so scary.

I've had people say to me- Young kids don't even recognize when a child is different, but I don't agree. Even children as young as 2 and 3 notice that Greyson is different- and they ask me about it because they are observant and curious. Two beautiful traits...It's up to us to make sure that different isn't equated with bad...and we can do that by accepting different in ourselves first.

I've heard, Why doesn't Greyson listen to you? Why doesn't Greyson talk? Why is Greyson screaming?   And when they ask I am never offended... Quite the opposite- I love 'em even more for it...

I certainly don't have all the answers or Life experiences...but I try to put it in age appropriate terms... Younger kids wouldn't understand terms like- Autism or Spectrum so I don't go there. (Ha! I don't understand Autism either!) But I try to say something like---

Every child is a gift from God- just like you are. Gifts are meant to be opened and celebrated. No two people are alike. Some kids look different on the outside- and some kids look different on the inside- like Greyson... Could you imagine if we all looked exactly the same?!! 

We ALL have things that we are good at- and things we need extra help with...Is there something you need extra help with? 

Greyson is a gift too. He loves to have fun and run. He's really good at jumping too!




Do you know how you are struggling with (riding a bike, catching a ball, multiplication)? Greyson is struggling with learning how to talk and how to share with others.  He doesn't mean to hurt your feelings or not share toys. He just needs extra help doing it as good as you do!

Can you help Greyson learn to share? And even though he doesn't answer back- still talk to him. You may have to call his name a few times to get him to look at you. When you talk to him- it helps him learn how to talk. I know you are a good helper! 

When Greyson is older if he has the capability to be involved with what we share it will be a team effort. 
I don't keep Grey's autism in the corner. If he is going to learn from others- I want them to know what's going on- otherwise in time he WILL be labeled as mean, stupid or bad or slow...and he is much more than that...




You can ask your kid's Teacher if there are any special needs children in their class. It's not the kind of thing that is advertised...if there is- ask if there are any learning/helping opportunities that your child can be included in. I am so grateful to you for your help.

Thank you to the special Momma who wrote to me- and all of you other Parent's helping to share Awareness for Different all over the World. 

bad on paper

We received Greyson's written diagnosis of Autism in the mail a few days before his 3rd birthday...
Ironically I was so happy to receive it because we needed the document to be eligible for services to continue after his actual 3rd birthday...

I remember Greyson's caseworker coming over a few weeks later.. She had overseen Grey's Early Intervention therapy and needed to officially close that chapter of our life. As she reviewed the report confirming Greyson diagnosis of Autism- she let out a sound of surprise...

Hmmmmm..... Wow... Greyson only got one diagnosis...Autism...

She flipped through some more pages...
After she finished the report she said- That's really great... Greyson only got the one diagnosis...

Why does she keep saying this? I wondered...And why is this great?

What do you mean- he only got one diagnosis? What else do they give out?

Without skipping a second she answered, MR...

More confusion on my part...


M........R.......?

Mental Retardation....

Wow...It really is a term used still.. I had no idea that was part of his evaluation...Thank God or I would have obsessed over it before hand...






How do they test these kids IQ? They don't learn the Typical way...and the only tests are Typical tests...How do they tap into the Life that lies inside- that we have yet to fully understand how to uncover? The answer is- they can't...

For days that's all I thought about...A Parent opening a report- like I did...expecting the sad but already known information...and then reading that their child also fits the diagnostic criteria for Mental Retardation... My heart breaks thinking about it... Double whammy... And then I realized beautiful, awesome, amazing children with Down Syndrome are also given the diagnosis of MR... It's so much more common than I realized.

So like all things that I ponder- I read...And I read and I read and I read... It seems that 50% of most Autism diagnosis also carry a diagnosis of Mental Retardation (down from 70% in previous reports)

A diagnosis of MR is partially defined by an IQ below 70. (And the term Mental Retardation is being replaced by the term intellectual developmental disorder.) The unfortunate part about any of of these terms - is once they exist--- they then have the ability to turn into a slang word as an insult... It's easy to say- That's so retarded... But somewhere every time that phrase is muttered- a Momma's heart breaks a little more...

Labels...often needed in the medical and scholastic World... It's up to us to realize they don't define us though...Not even close...

I was at my annual lady parts Doctor last week... They had switched offices and hadn't fully transferred all of their old paperwork...I was greeted by a new Nurse Practitioner that would be doing my exam...She went through her chart and asked me questions...

So- is Parker your only child?

ME: No- I have a 3 year old too. He was born in Los Angeles- not here in Fresno...

Oh- that's nice. They are close in age... What's his name?

ME: Greyson

2 boys. That's great...And Parker is 19 months now...How is he doing?

And I should have said fine and moved on...but I started to talk...

I gave her a little insight about my Life... My fears...Parker...Life with Greyson...Autism... and it all sounded so laughably bad... I got out my phone and said- please- let me show you some pictures...I've painted such a grim picture of my Life and it really doesn't feel that way...

And on the drive home I remembered back to my long and drawn out dating days... So often I'd have absolutely no chemistry with someone who was good on paper... Kind, fun, tall, polite, good job, handsome....but still nothing...

And I laughed realizing I am really bad on paper...


But most days I can have a good hearty laugh at my expense...and I'm strong as Hell- but have no short term memory because I forget I am strong... And I love to love...I love them- and I am damned good at it...






Our Life is like us...it just wants to be loved exactly for what it is... Flaws and all... I'm working on giving it the unconditional Love it deserves...


Not to be left unscathed by my props...

feelings

I was so ill prepared to tackle a Monday today... A Friday? I could have hit a grounder. A Thursday- no problem- bring it on...But a Monday? Heck no...Laughably unprepared...

The chaotic morning dance of getting out of the house in time was more like the clunky chicken.

I'm recovering from a cold...which has highjacked some precious much needed energy...Brushed hair and teeth --and sunblock...that was my beauty regime...and every time I walked by a mirror I thought- Seriously- can't you pretend to try to get it together girl?

I went on my morning jog- excited for the opportunity to clear my head from such unnecessary vanity and 5 minutes in I run by a parked Glass and mirror truck...with 10 foot mirrors lined up along it's side--all ready to reflect and mock me...

Dirty clothes and dishelveled hair make them so painfully adorable...and me ...not so much...

My tastebuds are zapped by my cold- and somehow that has caused me to eat more for some crazy reason...craving to taste ...to feel... to experience... Each item bold in its outright blandness...jalapeno chips... nuthin... coffee....nuthin... and for dinner...sweet potato fries and roasted red pepper soup...tasted like dirty cardboard air... I must taste and feel... I need my extremes...my salty and sweet...my melancoly and happy...

Today I finally finished Parker's First Year picture book. So many memories forgotten in a blink... I always remember the First year as being so hard and so good... See? Extremes...





When I review it in pictures though- it takes the scared, overwhelmed, deflated edge completely away... And it almost makes it like it didn't exist then... Remember that next time you are hurting, friend... You will barely be able to remember this moment some day... The details will be vague...So few moments are stamped on our soul in a permanant way. I love people who have a story...people who know hurt and who have recovered...It makes you better...it makes you understand people and the World and humanity in a way that you can't if you haven't hurt...The hurt---it ain't all bad I guess.

Greyson has the ability to experience joy without a filter...











He feels... He really feels...









And watching him feel...is a constant reminder for me to feel out loud too... A reminder to never stuff the feel- inside... I laugh loud (and if you know me you know I laugh REALLY loud)... I clap, I jump up and down... I try not to censor.

The things you enjoy? It's OK to really really enjoy them.

It's OK to cry too...



Creating Parker's book reminded me that no matter what happens with him... We will be alright...We will even be good. How could a World be bad with my Parker Doodle and his many faces in it?





We all are lucky to have him.



Sometimes it's scary...sometimes it's fun... If everyday was Bliss than none of them would be...





Go conquer the World... You got this too...

real world

Sometimes it's hard to go back to the real World after an extended break...So I will focus on the good... I welcome the return of structure and routine... Eating in portions...

This break reminded me that Life is sometimes slow, sweet and nothing but easy. We had time to play in the leaves and be fascinated by our very own itty bitty wee man shadows...




He woke up from a nap just in time to eat Thanksgiving Turkey...


I've never seen him eat so much.







Our Monday through Friday is usually a well oiled machine and it is ready to churn. Back tomorrow with a real post. This one is just your imagination...

love-
chrissy

grateful

It's easy to find a thing or two or 300 things to be thankful for... To truly be grateful for. I could name 100 things off the top of my head right now. That's easy for all of us to do- right?

But unfortunately I could also name one or two or 300 things to be ungrateful for too sometimes. 

What's the moral of the story? I don't know... I don't have the answers, but I suspect it's understanding that the gratefuls don't have the instant power to negate the ungratefuls... You are not allowed to focus, gossip, obsess, shop, channel Martha Stewart to show up your in laws, worship material goods and Santa in the hopes that they will be erased by also focusing on Jesus, living Zen, focusing on family-not things-- donating money and living clean and authentically.

I think the hardest part- a part I struggle with sometimes --is to adopt that constant and consistent feeling of thankful..and being grateful for things that are and not how we wish they were... Not having to look for the silver lining because it's already shining bright in your eyes...not just on Thanksgiving but always...

It's where your grateful so far outweighs your unsatisfied...it's where you can actually let go of anger, bitterness, fear, jealousy, comparison, envy, boastfulness and materialism.

The more I let go --the more I move forward.. I still have ways to go.

I am Thankful for my Family- the daily love and heart behind these words daily. I miss my Family in St. Louis everyday... But I am grateful they exist and are part of Greyson & Parker's life.

I am grateful to you...for so many reasons... For comments you leave here or on Facebook - that sometimes are my very reason I can get out of bed to tackle the day. Thank you to those of who let me know you can relate... Because you aren't perfect, you don't have all the answers but you still enjoy the ride...even when it's bumpy...especially when it's bumpy... 

I am grateful for those of you that share this blog. You have no clue- the small degrees of separation between yourself and a Parent affected by or about to be affected by Autism in the future... help them find this hopeful and warm place to land...When you come here to read- you are part of something so much bigger... I want to give insight I have gotten from you--- that we are all the same. Unique & the same all swirled into one. We just want to relate and be loved --to love and be understood.

I am grateful for the ability to believe in Hope... no matter what...

Happy Thanksgiving my Friends


thanks for the pic, Kasey!



Love-
Chrissy

he is in there

The first time I truly saw that Greyson could understand more than I realized was over the Summer... Greyson had therapy every day from 8:30am until 5pm. One of those days I had friends and itty bitties over to swim during his afternoon therapy session. Greyson was downstairs finishing up his lunch. All the kids and Moms lined up and headed outside...Grey got up from the table and went to join them.

Greyson doesn't usually notice what other children around him or doing- let alone join in- so I never thought he would attempt to join them... but --being outside and playing in the pool is totally something Greyson does- and that's what he really wanted...

His Teacher and I stopped him- Greyson- It's time to go upstairs. You need to go match your picture. Each therapy session starts out with Greyson matching a picture on a visual schedule- so he can keep track of when it is time to play, have snack, sit in the little yellow chair for certain programs and when therapy is over etc.


This isn't our schedule- but it's an example of one from the Internet... I'm too tired to go take a picture of ours.

 When Greyson heard- Go match picture - he melted...With his eyes scrunched tight and his face turning purple he let out a cry so deep time stood still...he still had food in his mouth from lunch and it fell out in slow motion... real tears were falling down his face... and my heart broke a little bit forever.

My little boy...just wanted to be a little boy playing in the pool...in the Summer... I couldn't blame him.

I didn't know what to do...so often he cries or tantrums...so often I must be stern with him- I learned I had to for his very survival...all business... Stand up! Feet on ground! Quiet mouth! Time to work! Upstairs now! Sometimes constantly correcting your child -feels so sad...And I couldn't do it this time...because of the look in his eyes... It was different... I had to help...but I was helpless...

I took him over to the nearest chair and set him in it... I made him look me in the eyes- which he did-- if only for a second...

Greyson... please.... don't cry. Mommy is so proud of you. You work so hard. You make me happy. You have to work a little more...I'll set a timer on the microwave...when timer goes beep- you can come swim...First work- then swim... 

This was way too many words for Grey to comprehend I knew... It's best to speak to him in sentences 3-4 words... But I needed him to hear more...I needed him to hear what I was feeling...

And suddenly Greyson stopped crying and literally hopped out of the chair- walked over to his Teacher to get his picture to match- and started up the stairs for therapy...

He's in there...
He's in there...

Remind me when I forget...



He's in there...

And I imagine if I was in a coma...and could hear...I would pray that people would still talk to me...and that is often a driving force of why I talk out loud to him all the time...



And a couple of days ago- Our family was in the playroom...



The boys were playing with this track...and one of the cars that goes on it was missing...Michael and I were talking about it...

Chrissy: Have you seen the car that goes on here?
Michael: No, I haven't seen it for awhile...
Chrissy: I haven't either... (I swear I also have a visual inventory of where most of our toys are too). What did it look like again? It was yellow- right? Or was it green?
Michael: No- it's yellow and it doesn't have a motor...

And suddenly Greyson stands up- goes right to one of our toy bins, finds the car deep inside and brings it over to us...



It's that yellow guy right there...He was listening...Holy Cow...

He's in there....
______________________________________

Parker started Speech Therapy today...



Sometimes doing the right thing is as hard has Hell, Friend... Sometimes we just gotta show up even when we don't want to...






We are grateful to have the expertise of Teacher Amy at The Talk Team to help us...

And afterwards Parker met his Friend for a drink- so he could vent about it...








She reminded him that some days- you gotta just keep smiling and trust it will all be OK in the end...









He thinks that sounds like a good plan... and so do I...

good at the holidays

This morning I was a giddy-insane, list writing fool... Oh the Joy I feel when I need to write a list- and I find a pen and paper-- all at the same time, Friend. Bliss...And then I rewrote my lists so they would look pretty and didn't have scratch offs  mistakes on them. I was so proud of me.





Next time I will even bring the lists with me to the stores and they will serve even more purpose in my life.







Today we all went to Target- to buy everything on our list plus tens of hundreds of dollars worth of stuff not on the list --but ONLY because I had no clue how many things I desperately needed--some of them I didn't even know existed before today.





Peppermint Bark Chex Mix!!??? How have these not existed before?! STAY AWAY from them- they are that good. I am currently covered in toe to head powder sugar and smell like a candy cane as I type away right now.

Oh Target- you had me at Merlot.



Before Life gets crazy like it does around the Holidays-- I want you to stop and take a deep breath right now...It's happening...the frenzy...the I have to have everything perfect and ready for {Thanksgiving/Christmas/stuffing/stockings/egg nog/Teacher gift/black Friday/dog gift/Christmas party/Our tree/the lights/bows/wrapping paper/little crunchy onion thingies/peppermint bark chex mix} and so on and so on and so on...

Oh friend- it's so easy to forget...so so so easy to forget and so hard to remember...

None of that matters at all...It really doesn't. It't not supposed to be the starring role in the Holidays...But we trick ourselves into acting like that is what it's all about...
And we judge...ourselves and others...

Why are they going so gung ho with their dumb Elf on the shelf? Why do the neighbors have their lights up already? Gosh- it's not even Thanksgiving?
Because that makes us feel behind in a race that isn't real... So you can stop running.

Maybe you're like me- and who knows when you'll get it together enough to get the lights up- and that's OK... Instead of being annoyed by the neighbors lights-- let's just all enjoy them. We could all use a little more light in our World...

And if you are the type that poops Candy Canes this time of year- and it isn't 2 parts chore 2 parts enjoyment for you? That's awesome too... That means you are good at the Holidays and the World needs people like you too.

I'm mostly talking to people like me- people that aren't innately good at the Holidays -but so wish we were --so we try like crazy and end up focusing on the things that just don't matter at all --so it can all be just perfect....and it never is...




Come to LifewithGreyson to remember the you that you were meant to be all along...

It made me think about the perfect Christmas Card photograph I want but probably won't get this year... And honestly- THIS should be our card- because it is the truth...





Thank you random lady at Target for taking this picture...I almost gave her a sticker to Life with Greyson- but I didn't want to confirm her suspicions that I am in fact crazy.
    
Have a wonderful day...
Much love- Chrissy

inside the perfect

I've had to start this first sentence over 1,254 times because it kept wanting to be negative...and I'm not feeling negative- and I didn't want to be negative.

So instead, I will start out with grateful. I am grateful that infections and viruses are currently swiped clean and we are all on the mend.

Over the weekend we went to my favorite little hidden spot for a Holiday Festival. It's a hidden gem down the street from our house that is usually deserted except for us... On Saturday they had fun and food, dancing and crafts. It was the kind of event that makes you welcome Fall with arms drawn wide.

When we are here- Greyson is truly in his element. The World is his... and I let him be him... I think that's why we both can relax. He walked in like he owned the join- unaffected by the people crowding our space.










We looked for our frog friends that live in the pond- but I think it's too cold for them to be hanging out now. Friend- it will be such a good day when the frogs are back for Spring. I can't wait to tell you when I see them again because that will mean that Spring is here.

Grey was mesmerized by the young men Punjabi dancing- and so was I. They were so sweet, so smiling- so full of life and pride. It was an honor to watch- and almost as much fun as watching them- was watching their parents watch them. Ear to ear proud....







And when I look over the pictures from the day- it looks like we had a perfect day- my perfect family and I....

But pictures can lie friend...


They don't mean to lie...maybe they just sugar coat...maybe that's why we love 'em so- they bring the good to the surface.

But I am reminding you- Pictures lie... because if you are like me- you see other people's pictures and other people's perfect...Even if it wasn't perfect- even if it was horrible...we still see the perfect... And  sometimes other people's perfect makes our imperfect feel so bad.

Oh friend- it was horrible... Not at the time-hilariously- HORRIBLE. Both kids were still not feeling 100% and they were crabby. Really crabby. Grey is used to being able to run wherever he likes when we are at our special place- and today we were making him walk by our side and he would scream and fall to the ground- or go limp every time we tried to walk somewhere with him.

Greyson and Parker both kept touching these custom hand made bird houses being auctioned off and the lady in charge did not find them amusing in the slightest.





Parker put his hands in slimy Owl poop on the ground...


It was 1pm and I had yet to eat and I was crazy starving. They had a cafe area with food- so I asked Michael to grab me some soup. Michael was holding Parker and I was trying to keep Greyson from running off into the crowd --but Parker only wanted me to hold him.  So Michael handed him to me too... Parker is clearly miserable- I go to set him down- thinking he wants to roam- wrong move...so I pick him back up --but now he's extra mad and he throws his head back and nails me so hard on my nose I hear a pop... and I scream OUCHHHH!!!!! in such a loud, psychotic and angry voice that everyone instantly stops and looks at me... I go over to Michael- shove Parker into his hands and say- HERE! TAKE HIM!!!! THEY ARE BOTH BEING SO HORRIBLE I CAN'T DO IT FOR ONE MORE SECOND... I'm going to the car. Let's just go...and I leave Michael 10 feet behind while I power walk to the car...and I hear both kids crying- and I want nothing to do with any of it...I pull my sunglasses on and cry.

We get into the car and I can't stop crying...Michael traveling- me sick- then the boys sick- it all caught up with me in that instant.... I start yelling.... They are so HARD! They have been HORRIBLE and I've been with them for too long for too many days in a row!  I can't do it! And now even Parker is being MEAN to me!!! and Michael is slowly learning that when I go nuts like that- all he needs to do is listen- and look concerned...and interject an-- Oh my...yes-you are right --I agree --here and there...

And after some food and a little calm I was so much better. (I could still use a trip to Fiji- but I don't see that coming anytime soon.) And today that was all a faint memory. I can do it again...sometimes I just forget.

This evening we went to the park... I let Greyson out of his car seat and let him run through the grass on his own like he loves to do to make up from yesterday.



And suddenly- out of nowhere- he turns around to make sure I am coming too...



And I was shocked...Such a sweet gesture...one that I rarely, rarely get from the sweetest little Boy so deep in his own little World... He noticed me... I feel like a giddy school girl...He noticed me...

And the tough and imperfect from yesterday wasn't even a memory...It was just gone...poof.






I think Parker just needs one more day to get back to himself.






Don't ever forget...Inside everyone's perfect exists touches of horrible... The trick is remembering which part you want to focus on in your Life.