blue skin

Usually by the time Thursday rolls around I'm done. In desperate need of a break from the week routine. Normal every day life. Sometimes it exhausts and bores me all at the same time. Last night as we were walking to our neighborhood park I was so bored. I pushed the same car the same route to the same park we've been going to for years. YEARS I tell you. Greyson even protested when I walked on the street instead of the sidewalk. Greyson really really likes the same. I guess I do too- until suddenly out of no where I feel like it will suffocate me. Same house, same car, same Life, same hair even- for YEARS. And out of no where I just want to revolt. I want to run away for the weekend, get a tattoo, dye my hair a crazy color...change...

But then when I got home from the park yesterday evening I was looking at pictures of our every day normal life -and they housed striking beauty hidden in their normalness. I looked at the pictures of us walking to the park, and they were beautiful in a way I didn't notice at the time. That's why I love my magic camera- and as I uploaded those pictures, for just a moment I remembered to be grateful for the normal. 



My camera helps me see the wonder I don't always see in the moment. 




Wonder that has been here all along.




I remember months back- right about the time I was realizing that Parker has autism. Michael had a routine Doctor's appointment and they found a large growth in his thyroid. Not a polite little nodule- but a larger mass. The Doctor threw around terms like cancer a few times and I tried to get prepared, but I was wrecked. Wrecked. It took at least another week for more results and in that period of time I wondered- Why do I take normal Life for granted? What did I do last Tuesday- the day before I knew anything about anything bad? I don't remember...but I was so lucky that day and I didn't even know it.

Thank God, everything turned out okay with Michael, but for just a little while I remembered to cherish the normal. Even the boring normal. But lately I've been forgetting all the time. Last night for at least a moment, I remembered.


I hate when life gets in the way of life. Remembering what's important. Remembering what I want to focus on during the day- not just at night when I am calm and quiet and life makes sense. In the day I am often just a hurried and frenzied drop off and pick up and only cross 3 things off my to do list of 122 things and 6 minutes late everywhere.

Today while I was getting my Starbucks I thought - wouldn't it be brilliant if there was such thing as Drive-Thru therapy? Somewhere you could quickly stop for coffee and a quick listening to? Sometimes I feel so much better after I say something that is heavy and has been suffocating me. Sometimes I feel so much better when someone acknowledges my fears or sadness- which then gives me permission to move on. And who can't fit in just like 5 minutes of therapy every day? I'm pretty sure the World would be a happier place.





But we can't really be blissful quivering piles of appreciation all the time- right? I've read the work of a few amazing and enlightened individuals and I think they have a lot of BRILLIANT things to say, but I can't say I'd really like to go grab a beer with them. I mean are they that blissful all the time? Do I even want to be that blissfull all the time? I really don't think so- so maybe a quiet, sulky, murky imperfect edge ain't so bad sometimes.





I love the fact that I am getting more emails and messages that start with- I'm probably not your typical reader.  Because here's the thing- I don't want a typical reader. I'm certainly not your typical Mom. And in order to fully change the World we need everyone. You and you and you too. I hear from Teachers and Parents, Gays and straights. People with kids and people with no children. People who curse and people who don't. People in high school and people with grown children and grandkids.

When you strip us from all of our nouns, there lies the very essence of humanity- and in that truest form- we relate. We are all unique yet so very much the same.That thought gives me so much HOPE. 









Have a wonderful long weekend my Friend. Is it weird to say I will miss you? No? Good- because I will.

Your blue skinned Friend,

Chrissy

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happy

• The smell of laundry outside through the warm blowing dryer vents
• rooftop and patio anything
• asphalt in the summer
• your emails to me
• a really good margarita
• the itch of a summer sunburn
• Free Speech Therapy for Parker, provided by Early Intervention Services by the State of California

• new shoes
• the buzz and hum of street lights
• the 1985 St. Louis Cardinals Baseball team...Tommy Herr, Vince Coleman, Ozzie Smith, Jack Clark, Willie McGee. The 5th Grade me thought that was as celebrity as it gets.
• the way my hair feels the day I finally get it done
• salty french fries
• organic baby spinach
• Doritos eaten in the pantry- which totally don't count
• white twinkle lights
• the smell of play doh
• cool clean sheets
• new discoveries

• rapid fire text conversations that make me laugh out loud
• slightly stale licorice
• a full DVR and nothing else to do
• Trash Truck Wednesdays

• ibook ap on my phone
• meeting a new friend girl and having a friend girl crush 
• knock me over movie quotes - Like this one from as Good as it Gets...

I might be the only person on the face of the earth that knows you're the greatest woman on earth. I might be the only one who appreciates how amazing you are in every single thing that you do, and how you are with Spencer, "Spence," and in every single thought that you have, and how you say what you mean, and how you almost always mean something that's all about being straight and good. I think most people miss that about you, and I watch them, wondering how they can watch you bring their food, and clear their tables and never get that they just met the greatest woman alive.

• And everything about THIS SCENE from Love Actually
• Late lunchtime visits from our dear Friend, Frank. Especially when he is willing to share with Doodle.

• Early Evening Family walks to the park

• The setting sun and diamonds on the soles of his shoes

• Typing on the floor of the bathroom at night while Greyson tries to poo. I'm certain one day I will miss this Life filled with my little tiny humans.
• And the emails, texts, private messages and comments I got from YOU about today's post. They made me laugh and shake my head yes and smile and feel like I certainly am not alone. Whether you related to the marriage bit or the tired bit or just the fact that this Life gig is hard as heck sometimes. Seriously, what would I do without you? 
• Every new LIKE on the Life with Greyson + Parker Facebook page.

Tell me, what about you? What makes you happy lately?

imagine

I've always been a late bloomer. I didn't get married until I was 32 years old- which is great because I'm sure waiting saved me a divorce or two. But it also stinks because Michael and I are both very much so (mostly) grown ups and often unbearably set in our ways. Marriage is hard. Really really really stinking hard- and either it's hard for everyone and people mostly just don't talk about it- or it's just hard for Chrissy and Michael. Something tells me the latter just isn't true, because so often you hear about so and so getting divorced and you wonder- how? It seemed like everything was perfect?


I think there are many reasons people don't discuss hard times in their relationship. We may feel as if we are the only ones that find it hard. The only ones that must be doing it wrong. I think some people keep their issues very private out of respect for their mate. I get that- they don't want to come off as a complaining basher. They don't want to air their love's dirty laundry or skeletons. They don't want to admit how imperfect their imperfect relationship makes them feel at times. I feel a little bad writing about my relationship. You only hear my perspective- and I don't want Michael to feel bad when he reads it. I always ask his permission. My text tonight- Permission to discuss our fight with my friends? Michael's response- Thanks for asking, but you don't need permission. And that is one of the many reasons I love him. He lets me be who I am- out loud. He's actually never tried to turn me into anything I'm not. 

It's so easy to think differently, act differently, do differently- in practice, on occasion, when it really doesn't matter and at night when I'm writing. But I just get so used to being a human being  - I get used to doing the same things I do the same way over and over again. Repetition. Routine. Rut. My greatest, worst-est friends. The older I get the harder it is for me to change.

This morning I woke up early with Doodle. He is a morning Doodle. I am not a morning Mommy. 




And as the morning went on I kept getting more and more exhausted. 



Cranky Doodle went to town. No, you can not have more fish oil. I know it's delicious.


By the time the rest of the house woke up I felt like I already lived at least a couple of days. Parker's therapist had another meeting, so his therapy didn't start until 10:15 this morning. As soon as she got here I immediately went into my room and burrowed back under the covers. I was so NOT ready to start the day, already exhausted. I try to remember a time I haven't been exhausted and I can't. For sure years of varying degrees of exhausted. At least that's how it felt today.

Michael was packing to travel for work. He had the luxury of showering and getting ready all by himself. Jealous. With what looked like pity and annoyance the freshly showered, suited up Michael said, You should really go to the Doctor to find out why you are so exhausted all the time. 

I poked my head out from under our down comforter. Pissed that this discussion was cutting into the hour of silence I so desperately needed for my very survival. Well, okay...but I think I know why. It's not like I have the easiest life. It's pretty hard sometimes. I don't complain about it- but that doesn't mean it isn't HARD. And with you going out of town on top of that it's sometimes unbearable. I just don't feel like I can catch up.

Yes, I know what you do is hard, I understand, Michael said to the over the top tired, still in the shirt I slept in, unshowered* me. But I think something might physically be wrong with you.

Straw. Camel. Bam.

Actually you DON'T understand. Being with the kids for 2 hours alone ISN'T like being with them for 6 hours or 12 hours or 2 days straight. It DOES something to me. It creates this exponential exhaustion that I just can't shake. Stop saying you understand! YOU DON'T UNDERSTAND. You don't understand me. I can't talk to you or Greyson or Parker and sometimes I feel so misunderstood and lonely. When I get to leave the house and run errands and go to Physical Therapy and the grocery store and be a real girl- I'm fine...but the days I am here ALL DAY- it gets UNBEARABLE. It's twice as exhausting as being on the go. 

And he kept saying he understood, but he just didn't otherwise we wouldn't be having the conversation in the first place. 

Michael and I were raised so differently. Our family lives were very different. We were taught different skills. We speak different languages- but strangely use the same words. Yes, no, up down. He speaks to give facts or details, to fix, to suggest or to advise, to tell a story or to get something done. 

I talk for all those reasons too, but also-most importantly to express how I feel. What I need. What scares me. What makes me happy. To encourage. To share. Sometimes when I talk to him and I need him to listen or support me-- I feel like he gives me robotic or hallmark card responses because he knows he's supposed to say something- but just doesn't know what he's "supposed" to say.

That's great dear. 
Don't worry- it's not a big deal.
Good job with the boys! They are lucky to have you.

I don't feel heard. That's how I feel. In order to write this post I asked Michael where he thinks the disconnect lies...which is funny- I didn't do it to communicate or to help us, but to write. But somehow in the process- it did help us. 

Michael explained it like this- he feels like he speaks German and I speak French. And although he understands French- he doesn't know how to respond to me in French. And I'm left feeling mad, and very misunderstood. Très Triste.


I broke very important autism rule #208, DO NOT ARGUE WITH BEHAVIOR THERAPISTS IN THE HOUSE. But they are here A LOT. And sometimes I get mad off schedule. 


And we worked it out-ish and Michael left for work. Sorry, just genuinely concerned about your health and blah blah blah. I tried to lay back down but my heart was pounding and my head was racing. I called to get some labs done at my Doctor's office. Annoyed. Then I was quite busy arguing with Michael in my head. Perseverating my Friend Heather would say.

I see a Dear Friend's name appear on Caller ID and I almost don't answer the phone because I was a big pile of angry, sad poo.  I don't want her to feel or hear that. I didn't want to be that either. As much as I tell you it's okay to feel this or that- I realized- I RARELY allow myself to FEEL through my unhappy. As in really work it out and feel it and feel it through. When I can't pull myself out of it- I feel weak and broken. I used to run it out- but now I can't. I don't always know where to put it. How to feel it out. I am realizing it absolutely MUST get out.

And talking to her was like warm butter and funnel cakes with powdered sugar and everything good. I felt so heard and so not alone. I tricked myself into thinking I was the only person in the World all morning. The only one who really didn't have a thing about Life figured out. I realized that there are certain things that I simply MUST get from a girlfriend. Things that Michael just can't and shouldn't have to provide. It's like I'm looking to him to be my husband and my wife. God made him differently. In our Family- he really does do the hunting and I gather the berries and tend to the children. If roles were reversed I just couldn't do it. Neither could he. We are doing what we are supposed to be doing as best we can. As for the communication thing- we are working on it. We are slow learners, but we care, and we try.


Apparently Grey was also having A DAY.




Sometimes I'm scared how much I'm needed. Sometimes I'm scared because I can't see past the blurred lines of what I must do- what I must see-what I must help with and work towards and control-- in comparison to the frenzy of what I can't control- but I am trying so desperately to hold onto in Life. 

How do you let go to the very things you must also hold so tight? And all at the same time? How do you know what must be held with clenched fists- and what may be loved much more loosely and watched from afar? There is no- THE answer. Just an answer right for me. And I bet you have an answer right for you. I guess that's part of the journey of Life. Figuring out what you need to figure out and figuring out what just needs to be breathed through. Maybe I'll figure it out when I'm grown up. 


I want to share with you a VIDEO that Doodle and I closed down his day with. 




One of my favorite Glee experiences ever. The gentleman who sings the intro has a voice that sounds like Heaven to me, but probably not in a way I would have appreciated a few years ago. Back when I didn't realize that the ability to speak was an absolutely amazing gift. 


You may say I'm a Dreamer, but I'm not the only one.


Listening to this song makes me feel understood. Not alone. Tonight's post is dedicated to Martin Luther and his Dream speech, given 50 years ago today, and to Cory Monteith from Glee, who I'm sure is making sweet music in Heaven.

Thanks for being here. Like really being here. I can feel it.

Love,

Chrissy


*Spell check said unshowered is not a word. Spell check MUST be a man who gets to shower ALONE every single day. 

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same love

I think we are on a journey. A very on purpose journey. If you are going through something tough right now I think there are many somethings you are supposed to learn from it. Me too. Maybe it's taking longer than we hoped. That means we haven't learned it yet. There's no fast forward. There's no quick speed. It's Life, not an iphone, not a dvr, not a microwave. Those who understand this are happiest. Those who take it day to day are most at peace. Those who fight it never understand.


We are guaranteed a journey, however we are not guaranteed happiness. Happiness is an optional add on. This is your journey.



Hold on tight.




Enjoy your ride.


One day during my senior year of high school I remember stopping at Taco Bell for lunch. A friend and I were enthusiastically digging for change on the floor of her car and in between the sticky seat cushions so we could buy our lunch. We finally found enough for a Mexican pizza for each of us, and a soda--complete with free refills to illegally share. While we were eating an older woman came over and went off on us for sharing and refilling the soda. Complete with names like- thieves, and terrible kids, shame on you- how dare. She demanded we stop sharing our soda immediately and go pay for a second one. And as soon as she left we exploded into giggles. Sheesh, lighten up lady. I know stealing is wrong- don't worry, but inside still lives the snarky little 18 year old me. There's a way to reach me and a way to shut me down in an instant. Calm honest kindness and the offering of a different way to look at things works wonders. Name calling and bitchiness, despite however true does nothing for me. 

About 6 months ago I was at a park with my bitty boys. In typical spectrumy fashion, as other children were running for the playground -Greyson was running away and towards a secluded corner of an empty field. I didn't fight it this time and I just let him do what made him happiest. He found metal freestanding bleachers and up and down we went, over and over again. There were some young high schoolers that joined us on the bleachers. They were taking pictures with a Canon camera which caught my eye. 

Oh I know, that's so retarded, one of the girls said. 

These were good kids, they noticed Grey and commented on how beautiful he was. You could just tell they were kind. I wanted to say something. I didn't know what to say. I would never be that lady at Taco Bell- it just isn't me. I thought about it a lot since then. I honestly wouldn't even be comfortable shaming them in the attempt to make a point, so I knew I needed a better plan and I needed to come up with something to say in the future. Yes, being quiet is much easier, but it didn't feel right.

In the future, I may just show the retarded-sayer a picture of my Grey. I might say- I know saying retarded doesn't feel like a big deal. I've probably said it a thousand times in my past life too. 




But this is my son Grey. He's taught me to look at everything differently. He's awesome. He's autistic. About 50% of kids with autism also get a diagnosis of MR- Mental retardation. You know- retarded. 






That's so retarded (which by the way is now called Intellectual Disability). 
That's so gay. 

Neither are okay. Consider saying something if you hear them used. For me, for Grey, for everyone that deserves to be celebrated for who they are.

This song breaks my heart open wide to let in more love. Same Love by Macklemore. I cried the whole first time I heard it. You, you, you...I love you just the way you are. 

My boy looks at things differently. Every day. 





Sometimes he holds things right up against his face and he examines them ever so closely. That's called visual stimming- and it's an autistic like behavior.


He reminds me to do the same. Chrissy- look at things differently. Sometimes people ask me- How do you get happy? I try and I can't. Are you really as happy as you come across on your blog?  

The answer to that is yes. I'm a pretty happy person. I think it's because I work at it. Maybe I'm a little wired that way too. I take Effexor- but that takes the edge off my anxiety-it isn't a one way ticket to happy. I wish.  I'm not always happy by any means. If I'm having a horrible day/moment/ time- I feel comfortable writing about it. But I guess I am much more happy than not. I focus on what makes me happy.

I think of people I find strong to fill the places that I feel weak. Like Martin Luther King. He certainly could have thought I wish I was white because life would be easier. He could have sat around all day long wishing he was white and wishing his children were white too. He wouldn't be a famous part of History doing that though. MLK didn't sit and wish. He went out and did what felt right. He spoke about how he wanted the world to look. He had dreams that were bigger than sitting around and wishing.

Michael J Fox was on TV today. I only saw about a 30 second clip but it provided me with so much perspective and happy today. He said something along the lines of- Everything that Parkinson's Disease has taken away from his life- it has also returned in different ways in much greater proportion. Instant chills. Yes, that's what I feel--I feel the same.Thank you for giving me the right words. Fox could easily look at the havoc it brings. The roles he can't get.




Instead he's helped create a role that he can play. Meet the Henry household, led by Michael J Fox as Mike Henry, one of New York's favorite news anchors, who had to put his career on hold to spend time with his family and focus on his Parkinson's disease diagnosis. But now his kids are grown and he's looking to get back to work, which is where this story picks up.



The show is set to air on NBC this Fall. I hope you have a minute to watch this. The trailer is awesome. Michael J Fox, you are amazing. You are a breath of inspiration in a sometimes confusing world. I can't wait to watch your show. 



It's funny when someone else's lesson- although completely different- also applies to you. A whole Life of Happy is too far to stretch. 



Just look for today's happy.  






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so much good

I still believe that good wins.

I believe there is so much more good in the world than bad. I think it's just a matter of focus. I believe people are kind, loving and good. In photography I shoot in manual mode so I can control all the elements that are controllable. Lighting, exposure, focus. I like a small depth of field- you know- when the subject is sharp and defined and the background is beautiful, muted and blurry. 

That's my perception in Life too. Good is up front and in focus, and everything else slowly fades away. This is how I choose to see Life. It isn't always my first choice, and sometimes I have to work really hard at it, but I want it to be who I am so I do the hard work. It's been one of my greatest strengths and assets when getting through hard times. It's called perception and I believe it's one of the mind's most powerful tools.

I have seen the letter written to the Family of a child with autism circulating on the Internet. If you want it read it, click HERE. It's okay if you don't want to read it though. The cruel and heartless letter suggests that a child should be euthanized because he has autism. The letter's words are offensive, disheartening and absolutely unjust. No person should ever have such words directed towards them. I have nothing but love and support for the family that it was sent to. I've seen the letter shared and reshared, oftentimes along with the words, People are so cruel. That part hurts me more than the letter. Why are people so quick to share the bad? I honestly don't understand. 

Reading that letter made me feel sick. But that letter reminded me of one thing, and ONE thing alone. It taught me something I already knew- There is at least ONE crazy, misguided sick person in the World. People are not cruel. Maybe sometimes -some people are...but people are good. I have a favor to ask -keep your mind open to that thought- people are good. 

I am so lucky, humble and grateful for the world of good this blog has opened my eyes to.  I've met so many amazing parents and kids with Super Powers thanks to Life with Greyson + Parker. Some in real life, some only through the very real connection of our words. I hear your stories of beauty and pain and I am amazed. I am enlightened. I am changed. You remind me why I write every night Sunday through Thursday night. It's not just for my boys- It's honest to goodness for everyone struggling with a label of different. Every person we meet has a story. Some are epic, complete with a hero. Many are amazing love stories. Those are the stories I want to highlight for you. I want to shine a light on Super Powers, on learning to love different and recognizing the good in the World. I want to show you some real people who work so hard and who choose to see the good. I want to remind you just how much good is out there and just how good that good is...


Chances are if you are here reading, you already know my two loves. But just in case you are just joining our little show, here's a quick recap.

________________________________



This is my son Greyson. He was diagnosed with autism a year and a half ago. He is magic and goodness and chocolate and EVERYTHING all rolled up into one. He makes me BELIEVE. He is my Teacher. He loves cars, bubbles, water and things with wheels.



Parker, who we affectionately call Doodle is pure liquid smiles and happy. He talks constantly- yet doesn't say any real words. His babble sounds just like a minion from Despicable Me. Parker's eyes are a blue that I've never seen in a Crayola box- or anywhere in Life. He will not be officially diagnosed with autism until he is closer to 3 years old- because that's how they do it where I live. Despite knowing what I know- it will still suck out my breath and crush my chest and heart to hear those words...again. 




Meet Nick. Diagnosed with autism at 3. I'm positive he is an angel roaming here on earth. He lights up the room with his magic. Nick just comes alive when he plays chase. Like giddy, giggle out loud, uncontrollable laughter, constantly asking for more, more MORE! He can never get enough. Giggle and chase. Chase and giggle. Stop for a second. Can't you just hear it? Nick is amazing at geography -like crazy good. He remembers where people he likes live- and even remembers which freeway to take to get there. I'm pretty sure his whole amazing family has Super Powers of their own.



This is Vinnie. I instantly smile when I see this smile. Vinnie and his parents have worked so hard and come so far. Before- nothing made Vinnie happy, but now he lights up when he sees his family and close Friends. That's not something a Spectrum Mom ever takes for granted. After much pain, perseverance and hard work by Vincent and his Parents, Vinnie can finally talk. It's amazing.  He likes going to school, kicking a soccer ball or hitting a baseball "all the way to the ocean". After two years he can finally put his clothes on by himself- and his Mom says you can see the pride in his face. He's a pretty amazing little guy who inspires me and gives me hope.




And I am so so happy to introduce you to Cash. Yes, THE Cash that Margo wrote about below. Couldn't you just DIE from his cute? A thousand words wouldn't do this picture justice.



Cash has autism and Sensory Processing Disorder with a Speech and Motor delay. Cash loves Pokemon, Minecraft and anything to do with helping people. He will happily give away all of his most prized possessions to a Friend if they don't have one. His kindheartedness and eagerness to make others smile brightens his Momma's most tiresome days. Cash is pure magic and he touches every soul he meets. I know he's touched mine.





AJ's Mom posted this picture on our Facebook page today and made my whole morning. He's usually too scared of the noise but today AJ stopped and had a moment with the trash truck. That is the kind of break through worth celebrating. AJ has permanent brain damage from a lack of oxygen in utero. He has mild cerebral palsy and an Auditory Processing disorder and issues with his hearing. AJ is sweet, loving and happiest when he is outside. He loves his sisters, his dog Ace and anything with wheels. 



This is Quinn.



Quinn is just absolutely awesome. He makes everyone he meets a better person. Quinn has a partial deletion and partial duplication of the short arm of his 8th chromosome. His Dad doesn't know if there is even anyone else in the World with that particular brand of Super Powers. Quinn can't talk, but he makes specific sounds based on the mood he is in. Brilliant. They always find a way to communicate with us, Friend. After so much hard work, he's finally mastering the stairs all on his own. Mighty Q loves music, silliness and the laughter of other kids. He likes Monster Trucks and Toy Story. He amazes his Parent's with his ruthless strength and determination. He amazes me too.

Here is beautiful Hayden.



Something about Hayden is just so divine. Hayden has autism and epilepsy. He is non-verbal. Hayden is tall and long and lean. He loves playing with his cars and trucks on the slide, and putting together wooden puzzles. Especially when they make noise. He loves playing chase especially when finished with a crazy tickle match at the end. Hayden's rare spontaneous smiles and occasional kisses are guaranteed to light up the World.



Delaney has Asperger syndrome which is an autism spectrum disorder (ASD) that is characterized by difficulties in social interaction and nonverbal communication, alongside restricted and repetitive patterns of behavior and interests. It differs from other autism spectrum disorders by its relative preservation of language and cognitive development. Delaney loves cats, garbage trucks, anything dark pink. She also is crazy about her Nana and swimming pools. Sometimes when Delaney speaks she sounds like a little professor. She can sing the heck out of a Disney song and is an absolute joy and light to her Parent's life.


And lastly, here's sweet Landon.



Landon was diagnosed with PDD-NOS- Pervasive Developmental Disorder Not otherwise specified. It is an ASD- Autism Spectrum Disorder. MOUTHFUL. To totally oversimplify it- to have straight up Autism- you MUST have the following 3 things: 
1.  A communication delay
2. Trouble with social interaction 
3. Autistic like behaviors which may include tantrums, spinning, sensory aversions, rigid routine -to name a few. 

Usually an individual with PDD-NOS has 2 out of 3 of those criteria. 
Landon is a brilliant, affectionate, tender-hearted and hilarious little boy. Goofy from Mickey's Clubhouse makes him belly laugh. He loves being chased and tickled and gives the very best hugs. He's happiest outside and loves being with his Mom and Dad and 2-month old baby sister, Delaney.
______________________________

Thank you so much for being here and reading about some of our Friends. I could have gone on for days. They may be small, but they are strong. These earthly angels work so hard and teach us so much. Their parent's resilience knows no limits. They teach us to be grateful for the small things. They teach us to notice authentic beauty without conditions or constraints. 

The parents of these amazing children with Super Powers know the deepest of fears and the deepest of suffering. The highest of joys and triumphs. They know a beauty and goodness from all over the World. A world where people are good. A world where people care. A world with people like you.


I needed you to meet them so you could see the good. Feel the good. It somehow makes more of it in the World. There's already so much out there, but we can always use a little more.



Love,

Chrissy


Life with Greyson + Parker on Facebook

A Very special THANK YOU to all the Parents who shared their story with me.

connections

Sometimes all it takes is one connection.  

I feel that, I think that, I do that, I am that.  

Do you feel, think, do that -am that too?  Am I not so lonely after all? Shew. Thank goodness, I've been looking for you. Just one other human, that's all it takes sometimes. Maybe we are so much more connected than we ever could imagine. Perhaps there are only a couple degrees difference between you and me.

I think at the end of the day we all go to bed at night and we just need to know that life makes sense. We need to believe that there is purpose and meaning in our own lives and also in the world. I think we need to feel like we are a part of something big and something good. We want to matter.

Sometimes it's so painful. Sometimes it's so amazing. Mostly it's in the middle though. Thanks for being in the middle with me.  Whatever you are fighting against or fighting for- you can't give up. You can and must take breaks. Never ever ever give up though. If it wasn't hard it wouldn't be worth it.



I think we long to show other people exactly who we are. Our deeply most imperfect parts. But instead those are the parts we end up throwing blankets over. We cover them up, and cover up the beautiful in the process. It makes it impossible for anyone to see the real us. It makes it impossible for us to be able to see out. And then we just start to suffocate.


Trash Truck Wednesday. I've been writing about it for years, but lately it's taken a new dimension. We are constantly creating and recreating our lives.



Greyson wanted to go inside, so Parker carried on the legend.


I love that both Greyson and Parker are in this picture.




Frank took a break and let Doodle drive.

Tonight I went for a run for the first time in months. I didn't want it to be true, but I had to take runner off my bio. My IT band keeps getting stuck to my quad. The two must work together harmoniously and slide back and forth during running. It's one of the things they work on at Physical Therapy. I'm hoping all my body parts can just get along soon.

And when I took runner off my bio, it then got me thinking. I am putting my professional photography business on hold. This blog is where your creative energy and pictures should go for now, said God. Of course I had to listen. And I hated charging for it because its like an expression of love for me. And some people just thought they were pictures. Eye contact. Love. Milestones. Every day life. That's so much more than pictures for me. And I can't not charge because it's expensive. Sitter for shoot. Sitter for editing. Custom printed HD disk. My professional camera was purchased expressly for charged shoots. That's okay- it's all working out exactly like it is supposed to. I'm learning to resist less and just go with it. 

So then I was thinking, Woah- so now I'm not a runner or a professional photographer? Too much change. Those are my nouns. Who am I without my nouns? And for days I thought on that. Those were nouns I identified with. Nouns I was proud of. And I suddenly realized despite my noun deletion, I am still EVERYTHING. I have always been and will always be everything. I always have been me and I always will be me, regardless of my nouns. Same with you. 

When we are born, God puts a little spark in us and everything we do can either fan that flame or dull it down. We already ARE. Nouns aren't the only things that define us.




The great news is- the bad nouns don't have to define us either.  When our nouns change,  perhaps God is just renovating. True renovations don't mean slapping on a coat of paint. They mean tearing down and changing in order to rebuild.


Love,

Chrissy



Life with Greyson + Parker is on Facebook

Behavior Therapy

I used to get my hair done at the faintest rumor of roots. Sometimes as frequently as every 4 weeks. True story. And I had my nails done every two weeks. I didn't think of it as pampering- it was job upkeep. I was in pharmaceutical sales in Los Angeles and I needed to be somewhat put together...I told myself to justify it all.

And one day I traded in the lip filler and Botox injections for B-12 shots for my boys. La Mer face cream for me- turned into progesterone body cream for Grey. And Speech therapy replaced manicures. I don't talk much about the biomedical treatments we have tried by design. But trust me- we have tried it all. What worked for me probably won't work for you. And things that don't work for us- could very well be your missing link in your treatment of autism. Like I've said before- I haven't found THE cause of autism, nor have I found THE cure. If I do, I certainly won't keep it a secret.


Today I was looking at my hair. Blah. Blech. Blah. I haven't had my hair done in almost 13 weeks. JT- I most certainly WILL cry you a river.

Tonight I did not rock Parker and listen to his heart beat. I ran by the open door of his room and threw him towards his crib, hoping he landed in the right place. BURNED OUT. Tuesdays are long, and often times I don't leave the house due to back to back Applied Behavior Analysis sessions.

Applied Behavior Analysis, ABA is one proven method in the treatment of autism. Both boys do this form of therapy 5 days a week. Behavior analysis focuses on the principles that explain how learning takes place. When a behavior is followed by some sort of reward or positive reinforcement, the behavior is more likely to be repeated. Same for us typical folks- right? If we get paid, if we are told, GREAT JOB!, if we are rewarded for an action, we are more likely to repeat that action.



This sucker is a great positive reinforcement for Greyson because he is willing to work for it.

Through decades of research, the field of behavior analysis has developed many techniques for increasing useful behaviors and reducing those that may cause harm or interfere with learning or life. We are trying to reduce behaviors like yelling, screaming, hitting, and increase attention span, learning readiness, and cognitive function. ABA helps individuals live a happier, more productive life. Many studies have demonstrated that many children with autism experience significant improvements in learning, reasoning, communication and adaptability when they participate in high-quality ABA programs.

Greyson's quality of life is so much better due to ABA. It helps him make sense of his world and decrease his level of frustration. I don't want to know where we would be without it. Greyson is 4 years of age, but developmentally is more along the lines of about 2 years old. Parker is 2, and developmentally seems closer to 12 months of age. ABA helps bridge the gap between what the boys are capable of doing now versus what they should be able to do based on their chronological age. Like important concepts and self-help skills the boys need to function and survive.



Sometimes learning takes place in a little chubby chair. But the best teachers teach everywhere, because Greyson is going to have to learn in every type of circumstance for the rest of his Life- not just in his chubby chair. The whole wide world is a learning experience in functionality for Grey.



Today Greyson even got to sit in his car to learn, which is brilliant because he works harder. Sometimes the trickiest part of ABA is finding a reinforcer that has POWER- something for which Greyson is willing to work. The best ABA Teachers know the science well enough to also know when it's also okay to break some rules and think differently. 

Here Greyson is working on expressive nouns. He has to repeat the word after his Teacher says it (belt, boots, purse). He already knows it receptively- so if I say, Belt and put my hand out- he is able to hand me the appropriate card. 



It's not always fun, he doesn't always like it, but he works so stinking hard- and it works.



Greyson is sorting categories here. Clothing, vehicles, animals. Typical people learn to sort subjects in their mind as a way to make sense of the world. We must be able to categorize items according to their description. This is a skill that not only has the potential to open pathways in Grey's mind, but it will help him organize and make sense of the world.

Doodle works hard too. 



Here he is learning to imitate by doing. Most kids on the spectrum don't imitate naturally. Typical children are whizzes at imitation. They learn from watching us. Most spectrum kids need to learn to imitate by doing over and over and over again.



 
It's not all rainbows and sunshine for Parker either, but he works through it. He works when he doesn't want to. Here he is doing Motor imitation. He has to stack the blocks in the same pattern as the Teacher. Right now it's just one block on top of another. When he is able to master that they will add more blocks.

Both boys are working on a variety of different skills. This is just a little sample.
ABA Teachers are truly awesome. I could NEVER do what YOU do- and you do it with grace and patience. You have super powers of your own.
________________

I remember Greyson first working on prepositions, a concept he doesn't yet get. 

Put block UNDER truck.

And hand over hand, Greyson is guided to hold the block and then release it, placing it under the truck.

Great job, that's under, they say, as if he did it all on his own.

And Greyson and his Teacher do that exact same activity over and over and painstakingly over again until the Teacher can slowly remove their hand- which is called a physical prompt -to then use a less intrusive prompt like a point. Prompts are slowly faded as Greyson learns what is being requested of him. And one time after many days or weeks or months, Greyson will automatically put the block in the correct place when told to put under. At first he won't understand what UNDER means- he has just finally memorized when the Teacher's mouth says UNDER the block must be placed in that certain place. Around this point put block IN truck may be introduced, and the two will be randomized back and forth. Now Greyson must distinguish between Under and In. This activity is called Discrete trial training and it is a one-to-one instructional approach used to teach skills in a planned, controlled, and systematic manner. It's a staple of ABA- Applied Behavior Analysis. 

Greyson must visualize and execute a concept he is learning over and over and over again for it to click.  Once he learns it in a controlled setting, he will then have to be able to generalize it to numerous different settings before it is truly learned.



After anywhere from 1- 5 correct responses, Greyson is given a reinforcer. It can be a toy, a high-five or food or candy.

And one day Greyson will be that much closer to communicating and understanding the world. And when I say, Greyson, get shoes under chair, he will know where to look. And when you see something subtle and functional like that happen, something that may have taken him weeks or even months of hard work, of nap and park skipping- it's a little bit of magic.

Until then I try my best to talk to him with as few words as possible. I need him to get me. I need him to feel understood without words. I need him to know he is not alone in his world. Even if he wants to be, I won't let him be alone.

If you are scared or nervous for something...if you have to go do hard work and you don't want to-or don't think you can-- think about Greyson and Doodle working their butts off over here. Channel their tenacity and strength. If they can do it- than so can we.


Love,

Chrissy