Tuesday, March 7, 2017

stuck in a moment

As I sit at my kitchen table and type, U2 is playing in the background. A band that played throughout all of my college years. All five years to be exact. And no, I didn't become a doctor in that time period. Or even get my Masters. I just took a really, really long time to figure out what I wanted to be when I grew up. I'm still trying to figure that out. There have been twists, and turns and numerous reinventions along the way. All of them leading me home to the me I think I was always meant to be.

Tonight these words struck me with force...

You've got to get yourself together
You've got stuck in a moment
And now you can't get out of it

Don't say that later will be better 

Now you're stuck in a moment
And you can't get out of it

(U2 Stuck in a Moment You Can't Get Out of)

It's scary how easy it is to get stuck in a moment. I like to tell myself, "Make sure you don't turn your moments into forevers. They are only moments." But when you're actually IN the moment- it feels like a new and awful forever- doesn't it? I mean- only when it's bad and hard and sharp and yucky. "Wow. This is my life and it is awful, and I just can't do this." I think. And minutes or days later, I realize that awful has come and passed. Or maybe it didn't pass- maybe I just learned to live with it. Replacing extra joy to counteract some pain. Finding gratitude amongst the pieces.

"Chrissy- I wish I was more positive. How do are you grateful for the hard things life gives you?" I am asked a lot. Here's the thing my friend- I don't START there- at gratitude or happy. Oh goodness no, not ever ever. I need time to percolate, to process, to figure out how I feel about even the smallest of things in life. And ABSOLUTELY the big things. It's part of the reasons why I must write- it helps me process this crazy and chaotic always processing brain of mine. Sometimes the initial info my brain sends back is rooted in fear and loss. I have to work through that stuff and figure out what I should keep, and what I absolutely need to declutter. I work like mad to color code and alphabetize my thoughts into things I can do something with. I am hard wired to be solution oriented. Glass half full. But it's still a process of getting there. I believe that with the proper guidance, almost anyone can get there. But they have to want to do the hard work.

But sometimes, mistakenly- like U2 says, we actually do get stuck in our moments. It scares me how easily it happens, and sometimes I don't even realize it until I'm on my way out.

I looked at my camera sitting on my counter a couple of days ago, and it looked like a stranger to me. I used to bring that thing with me everywhere. Truly, everywhere. Random real life pictures are my soul food. And one day- months and months ago- I stopped feeding that part of me. I figured documenting moments on my iphone was enough- and it is, if documenting was all I was doing. But using my real camera, selecting focal points, adjusting lighting, experimenting with angles- it feels like making music if I could play an instrument or sing. It feels like coloring. It feels like dancing. I used to do photography professionally- and I didn't feel those good feelings when I took pictures for people. But I absolutely get them when I photograph everyday messy, imperfect, real life.

Somehow between then and now, I got stuck in a moment. But the good news is, most of our moments we actually can get out of. I dusted off my friend, and my fingers started to come alive again.

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They are obsessed with this train at our local mall. They both sit in their own cart. No sharing.

The weather has not been stuck in a moment. It's been all over the place. Hot one day...

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Gosh I love details. Kids help people notice details. Especially kids with autism. And cameras pay attention to them too.

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Farmer's market fun

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And then life turned cold and rainy and I loved it.

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It was drizzling and cold and they didn't care a bit. I hate to be cold. I'm realizing that most of my favorite parenting moments were ones that initially felt cold and inconvenient and messy or something not that preferable.

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Alone time with Parker

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He LOVES letters and spelling out words

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Pay attention to the details, for they are your life. Are you stuck in a moment? I give you permission to get out. Thank you for looking at my pictures, and hanging out with me.

Much love,

Tuesday, February 21, 2017

status quo

I love chatting with you. I don't have a lot of words in my head or even a topic, but it's been too long, and if I go too too long- I get blocked. Like constipation but with words. We're all grown ups here- we can admit we poop- right? Or is that something grown ups aren't supposed to talk about? I forget the rules. And when I remember them, I'm constantly breaking them anyway. Oh well, at least that way I am guaranteed to amuse or offend you.

I've got pajamas on, and I am happy. I guess content would be a better word. Life is easy, status quo. (Please life- don't jinx me for saying that. I'm enjoying this coast). 

Some scenes from everyday life.

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Chocolates from my dad. My first Valentine. For the past 35 or so years, he has bought me, my two sisters Lisa and Katie, and my mom each our own box of chocolates from Merbs in St. Louis. Now he sends mine from Missouri to California. He's a pretty amazing guy.

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How we roll at Target. Canadian friends- I heard you don't have Target. My condolences.

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It's been so rainy here lately. And I must admit, I love it immensely. I love it because of how the air feels- crisp and clean and full of possibility. I love the smell of wet grass and pavement. I love the sound of rain on rooftop- both my home and car. I love the rain because it is a full sensory experience. And I love it because we need it here in the Central Valley of California.  In Fresno County we grow over 350 crops, many of them grown nowhere else in the nation, at least not commercially. 99 percent of the raisins in the nation come from Fresno County. We are also know for our nuts, peaches, plums, nectarines, apricots, citrus and figs. 


So often learning sounds so much like pain, that we fail to recognize anything but the pain.

When Parker is reading new words that he's learned, and sitting nicely in his chair and paying attention. That's not learning. That illustrates what he HAS LEARNED. It's when the seeds bloom. It feels good and productive.

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The real stuff is the in between. When he doesn't know the words or activity or lesson. When he doesn't want to sit. When he is frustrated and throws things and clears a table with one swoop of his arm... But then he settles and does it anyway. Imperfectly.

THAT IS LEARNING. Sometimes when I hear him screaming or yelling out of frustration during therapy- I think- "that sounds just like learning."

The same holds true for us. When we are happy and it's easy and everything is working- that is the blessed part of our life called cruise control. The unfortunate truth is, many of us miss those seconds or minutes as the pass through. And the easy times always pass.

But when we are frustrated and nothing makes sense and we are so damn uncomfortable, that's when we learn, and that's when life changes shape. The more important the lesson, oftentimes the more uncomfortable. Sometimes you must ask the pain, "what are you here to teach me?" And then open yourself to the answer. 

And remember, sometimes pain is just a stop on the way to change.

It's definitely one of those things that's easy to remember when life is good and impossible to remember remember when life is hard. 

Thursday, February 9, 2017

changing the narrative of special education

Today I had the opportunity to present a topic extremely near to my heart to the head of Special Education for Fresno Unified School District. Fresno Unified is the 4th largest school district in California. There are about 75,000 students in the district, with approximately 10% of them being students with special needs. So much needs to happen to change the narrative of special education within Fresno Unified, and I need to be part of the solution. Special education needs the same kind of collective commitment given to issues of other civil rights.

nar·ra·tive ˈnerədiv/
noun 1.a spoken or written account of connected events; a story.
synonyms: account, chronicle, history, description, record, report, story

I want to change the story that is told about children with special needs. Instead of "different, separate, disabled", I tell a tale of "same, belonging, unique". Same group of individuals, but two incredibly different stories- it's simply a matter of perspective. I want to live in a world where everyone matters. My son is educated in an old portable classroom about 100 yards away from the actual school. There are no general education students also educated all day in these portables. Special education students cannot be segregated, and I must speak up for my boys, and for every child that can't say, "please, make sure I belong."

My two amazing boys with autism changed what 'special needs' means to me. They have opened my eyes to the strength, tenacity and spirit it takes to navigate a world that doesn't always make sense to them. They remind me how unique they are, and they broaden my perspective of the entire world and the people in it. 

They show me that we are also the same, my little buddies and me. We want to be successful. We need to feel valued for who we truly are, and we need to feel like we belong to a community. Belong....I say it out loud and it sounds like music to me. We all need to belong to something that is bigger than we are alone.

So, here is an adapted version of the information I shared today. I want to share it with you. If you believe your school needs more inclusive practices, don't be afraid to speak up. Or be a little afraid- like I was- but do it anyway. (Another lesson I've learned from my Greyson + Parker.)

What is inclusion?
Inclusion is educating special education students to the maximum extent possible, in age-appropriate general education classes with high quality instruction, and interventions and supports so all students can be successful. Inclusion is more than a set of strategies or practices though. It is an educational orientation that embraces differences, and values the uniqueness each learner brings to the classroom.

Why is inclusion important?

•The benefits of inclusion for students with and without disabilities have been well researched and well documented.

Inclusion leads to lower rates of suspension and drop out, and to higher rates of employment.

•A school’s job is to prepare ALL students for the real world, and the real world doesn’t have separate neighborhoods, jobs and communities for those with special needs.

•It's a civil right, protected by Federal law, and the socially just thing to do. 
Individuals with Disabilities Education Act (IDEA) states that children with disabilities must be educated in the "Least Restrictive Environment" (LRE), and to the maximum extent educated with children who are nondisabled.

Shared Vision:
Fresno Unified school district needs to have a shared vision on what inclusion is, and what it will accomplish for all students. Educators and parents will work harder to accomplish goals when they are stakeholders in the process. 

Schools or entire districts can create an Inclusion Team Task Force. Educators and stakeholders from multiple disciplines responsible for creating a foundation and implementing meaningful inclusion. Anyone with insight into special education could be take part, including but not limited to general and special education teachers, Speech Therapist, Inclusion Specialist, school principal and parents. Ideally, the task force would be comprised of professionals in the public and private sector in order to increase the range of experiences in the collaboration and to ensure fidelity. 

An Inclusion Team Task Force could create a framework of inclusion policies and procedures that can be individualized per student. A shared vision, and working policies will also give students more consistency with inclusion from year to year, regardless of their special education or general education teacher. 

The kids who aren't able to follow common core at the general education pace- the ones who aren't labeled as having "high functioning autism" are getting lost in the system. Amazing and bright children like my son, Greyson. Some have had no exposure to general education classrooms for up to four years. We need to do better to make sure these children are general education students first, and to ensure that practices like "Least Restrictive Environment" under the Individuals with Disabilities Education Act is being followed. Because right now- it is not.

We can’t ask teachers to meet the unique needs of all students without also giving them the tools to do so. All educators would benefit from training on:
Successful inclusion methods and strategies
The most basic information about the disabilities they will encounter 
Behavioral intervention based strategies and social and emotional supports 
Universal Design for Learning (UDL). This is a proven and effective framework that guides the development of flexible learning environments that accommodate individual learning differences which increases access to learning by accommodating ALL learners.

This training should be mandatory and the teachers should be paid for their time. 
General education teachers themselves have reported that they lack adequate preparation to teach children with moderate to severe disabilities in inclusive settings. When teachers do not receive adequate information, both teacher and students fail. 

Inclusion doesn't occur by osmosis- It is more than a student sitting in a general education classroom for a set period of time. Proper planning is imperative for meaningful inclusion.
Special education and general education teachers need time to collaborate to create adapted curriculum when necessary. The special education educator would take the lead in adapting and modifying, but it's imperative both educators feel ownership in the child's education. Teachers must be compensated for the additional work load extensive planning creates. 

Inclusive Culture
Inclusion is not just a special education term- it’s a term for ALL students. 
The entire District, including key administrators and all school sites must treat special education students as equal and valuable members of the school community, in both words and in actions. Right now the Fresno Unified special education website says, "Each child in public school in California is a general education student first". But those are only words. It's not true in action.

Special education students should be invited to participate in clubs, they should be a part of all school events, and they should be invited on the same field trips at the same time as their general education peers. Special education students should eat lunch with their general education peers. The special education classrooms should be integrated within the heart of each site campus. This is imperative because it disallows segregation and it allows faster and easier transitions between classrooms. 

The entire school should be adapted to be inclusion friendly. Just as schools would use brail for students who are blind, children with autism need visual supports and sensory tools in all common areas including but not limited to the library, playground, bathrooms, cafeteria, motor and resource rooms.

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Inclusion in the classroom:
“Positive attitudes, strong partnerships between parents and educators, use of appropriate interventions to address students’ needs, and meaningful adaptations and modifications to the curriculum are considered important elements for inclusive programs to be effective”. 

Successful implementation of inclusion requires commitment, creative thinking, a growth mindset and effective classroom strategies.

At the beginning of every year, every eligible special education student should be assigned a general education teacher, and a desk in the classroom so they aren't visitors. 
Inclusion is about interaction and imitation. A time when a child should be coached to follow a sequence of behaviors in situations that are academically relevant. The child with disabilities needs to be given opportunities to participate in the lesson and interact with peers in ANY area where they may possess skills that are on target with their general education peers. It's important that the inclusion opportunities are in line with a special education student’s skills in order to be successful. 

Not doing inclusion is bad. But doing bad inclusion is worse. 

Inclusion should be evidence based, while using a variety of differentiated learning techniques (Modeling, Naturalistic Intervention and Peer Mediated Instruction Programs). 
The classroom environment is an important factor in inclusion. There should be clear, designated areas for instruction with developmentally appropriate center names. There should be numerous visual supports throughout the classroom and any shared environments. All students will benefit from a classroom schedule and visual timers to indicate transitions. 

The US Department of Education recommends Co-teaching as an effective tool to use in the inclusive classroom. This is a teaching relationship in which general and special educators share responsibility for planning, delivery and evaluation of instruction for a heterogeneous group of students. These teachers use techniques which allow students of varying abilities to achieve their potential. The program utilizes behavioral strategies such as: schedules, fluency-based practice, generalization scenarios, peer-based modeling, video modeling and scripting to help develop skills in multiple areas.

Here are some results of research done at schools in Southern California. The data looks at students with autism who would have formerly all been excluded to separate special education schools, but were now randomized to either an inclusion classroom, or a special education only classroom. All special education teachers co-taught with general education teachers in the inclusion setting.

The graph shows the average change in standard scores between initial and subsequent administrations of the Woodcock-Johnson achievement tests between first and sixth grade, and examined reading, math and writing. The Special education students in an inclusive school results are shown in blue, and special education students in self-contained schools are in yellow. 

As you can see by the graph, the increase in standard scores for reading and math were tremendous for the special education students that were in an inclusive classroom. Students who remained in segregated schools not only did not improve, they got worse.

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When it comes to inclusion, there is no one size fits all. Full time inclusion is not academically appropriate for all children with disabilities. My second grade son with autism needs to also spend time in a small classroom, free of too much sensory stimulation with one on one instruction. There are numerous things he needs to learn in much smaller steps than what is being taught in second grade common core. It's key that inclusion is as individual as an IEP.

And for children that cannot leave their classroom, or to create social and language opportunities for every student in special education, reverse inclusion is an effective intervention tool that involves bringing several general education students out of their classrooms for short periods of time to interact socially with students with disabilities in their self-contained classrooms. These interaction opportunities are provided when the students are involved in a wide range of activities conducted in various settings. Program success depends on: 1) proper recruitment and preparation of students for the program; 2) effective scheduling of interactions; 3) identification and selection of appropriate activities; and 4) the development of measurable program goals. 

At the end of the day, what is important in Special Education is what is also what is important to ALL children. Special Education students need to be given access to the tools they need to learn. They need to be evaluated and taught based on how they learn, and what makes them tick. When they aren't getting it, we don't quit and say- "Well, we tried." We say, "What other way can I teach this same concept based on what this learner needs?" Most importantly, students with special needs must know they are a valuable part of their school, and they need to feel like they belong. In order to feel like they belong, they need to be treated like they do. 

So, let's work together and build something great for these children.

Thursday, January 19, 2017

Dear Betsy DeVos

Betsy DeVos, 

As a person who will likely oversee American schools, your words matter. In fall 2016, about 50.4 million students were enrolled in public elementary and secondary schools, and these students are depending on you. Clearly you are getting hammered by public opinion and the press. You said some unbelievable things that made it appear as if you do not understand the basics of the public educational landscape in America.

I believe you can and will do better to ease the minds of countless parents and educators alike. Your role demands it. As the wise Dali Lama said, "If you think you are too small to make a difference, try sleeping with a mosquito."

I'm not here to slam or ridicule you, that doesn't help either of us, and most importantly it doesn't help any one of those 50+ million children who may be in your hands. I truly want to help them, and I want to help you. I want to educate you on what our public education looks like on a grass roots level, in ways you simply can not learn from policy, senators or a book.

There are few things more important in a child's life than education. Their socioeconomic background, their home environment, their ethnicity, how and by whom they are being raised, the love they are given, their health, the grades they get, their athletic ability-- unfortunately none of these things are guaranteed or distributed evenly.

An opportunity to learn is one of the few things guaranteed to all children, regardless of circumstance.

Yours will be one of the most important jobs in the world. I know you had a privileged upbringing, complete with private education, and you have no background in public schools. You didn't chose your background either, and I don't think that should be held against you. However, now you are now afforded the opportunity to make a difference in the lives of millions of children, therefore you must understand what public education looks like and feels like in our great nation.

I'm the proud Mom of two little boys, Greyson (7) and Parker (5). I'm passionate about education. We live in the 4th largest district in California, Fresno Unified, which is responsible for educating almost 75,000 students. Both of my boys have autism. Being a mom to neurally atypical children infuses additional challenges and requirements from public education, and it my pleasure to advocate on behalf of my boys.

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I've seen firsthand how a good teacher can improve my boys lives in ways I can't. I've seen how a bad teacher can cause damage, setback and erode a love for learning. When it comes to education, every person involved matters. I am intimately familiar with IDEA, The Individuals with Disabilities Education Act, and the protection it puts in place for our children, as well as the accountability it requires from the school.

I want to invite you to our home in the Central Valley of California to meet Greyson and Parker. (I promise we have no grizzly bears here!) We can talk about what IDEA and education mean to our family. We can visit our school for a tour. I already asked our Principal, and he said he would love to show you around. We can talk to the teachers, they are the true world changers and have the most authentic and ground level view of education. I'd also love for you to attend a District Board meeting with me. You can see first hand the policies and procedures that must be in place to run a large district and its thousands of moving components. The next meeting is January 25th at 5:30pm.

Mrs. DeVos, my invitation is heartfelt, and I hope you take me up on this offer. I know you champion innovation, and I believe with some genuine understanding of public education, you have the potential to make great impact. 

Most Sincerely,

Chrissy Kelly 

💙  (Greyson + Parker's Mom)

Friends!!!! will you please share, tweet @BetsyDeVos-do WHATEVER you can in the hopes it will reach her?

Wednesday, January 18, 2017

the ending of a middle

I just want a moment to breathe. To sleep, (oh god to sleep!!!) Studies show that moderate sleep deprivation produces impairments equivalent to those of alcohol intoxication, and I can prove it to be true. 

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My first born baby boy, Greyson is 22 months old and plugged into Blue's Clues for at least the fifth episode in a row. I stopped counting somewhere around the second one.

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I am a nursing machine to my brand new baby boy Parker, and it hurts and I'm tired and over it. I'm trying like mad to nurse extra on the right side this time so I don't turn back into cyclops boob. I feel trapped. Michael just returned to work this morning after a couple of weeks at home with us. He is so lucky. I heard the rise and fall of the garage door, and now he is gone. And somehow, I am to survive the next eight or so hours, most likely doing exactly this all day long. It's nothing productive and everything exhausting all rolled into one.

We are in survival mode. Cleaning and grocery shopping and running errands are not on our agenda. Figuring out how in the hell other people do this two kid thing, (and also somehow make it look easy) is.

I just need a moment to breathe.

We are now a little over five years past that time in my life. Greyson is seven, and Parker is five. 

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And without my permission, they went from littles to bigs.

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Just like that.
Today I had a meeting with the boys Applied Behavior Analysis (ABA) folks.  In case these three letters strewn together are not commonplace in your vernacular, let me explain. ABA is how most kids with autism learn best. As a discipline, ABA providers are charged with the improvement of behaviors which can include communication, social skills, academics, reading and adaptive living skills such as gross and fine motor skills, toileting, dressing, eating, personal self-care, domestic skills, and work skills. Education law supports the use of specific and effective interventions for children with autism- you can't just head to your closest school and enroll them in general education, drop em off and go. 

In Spectrumville, everything is different. What is purple here, is scrambled eggs there. Now sometimes that is good, because in Spectrumville apparently hands are fascinating, looking at things from the corner of your eye is normal, lining things up feels like jumping, and things with wheels are the coolest things in the world. (Oh and PS-clothes are optional-duh). 

But sometimes it's bad. When you have autism, you have some degree of difficulty with communication. You have behaviors that aren't always OK (Like spinning around and around for hours, or flapping your hands, or hurting yourself or screaming over and over again, until you are sobbing and sweating and shaking, because you desperately WANT to communicate something important with words, but you just don't have the ability, or being unable to process language and focus in school.) Autistics struggle with social skills and social norms. Trying to go through life in a majority neuro-typical world can feel almost like an impossible task for people with autism. ABA helps bridge those gaps.

Today during the meeting we talked about Parker's upcoming enrollment in school, and what kind of after school ABA hours we were planning on doing. I started thinking about what our days were going to look like. And then I started thinking about what my days were going to look like and I was certain I was just about to burst into loud, embarrassing tears. I'm trying not to cry right now as I share these words with you. In a small way, I felt like I was being let go of my job. Or maybe my heart. Thanks so much for all your hard work and effort, support on this project, Chrissy. Congratulations! It is complete. You are done with the toddler years!

But NO NO NO, I want to yell forcefully. I demand a recount, or I need a new baby RIGHT NOW. I am not ready to be done with this part. I want to go back for just a day to the teething and the nursing and the sleep deprivation. I want to go back and complain about how freaking hard it is, but I still want to do it all over again.Back to the days when we were together all day every day. The days we ate lunch together and walked to the park before nap. Those were the worst and greatest days I've ever lived, of that I am certain. They were profoundly ordinary and they are now just sugar coated dreams. Even the shit parts.

But here I am, I couldn't believe it. It's here, the moment I prayed and wished and hoped and prayed some more for. I can breathe. I can sleep. I can use the bathroom by myself. I can shower whenever I need to.  It really did get easier as they got older, just like everyone promised. But maybe...just maybe, easy isn't always the best.

And I just want to cry. I want to go into my room and close the door and cry as hard as the rain that is pounding on my roof right now. But instead I focus on breathing. In and out, all day long. This is life, and we are always at the beginning and middle and end of something. (Always.) In fact, that's one of the requirements of being human. 

It looks like I've made it to the other side of this middle. Almost all the extremely hard parts in life are middle. I shared about the middle on Facebook the other day...

The beginning is easier. We are either unaware or up for the task or adventure. The end is a breeze, when we see the finish line and the next thing we know, the end is complete. Processed. Understood. The things that didn't make sense in the during become clear.

It's the middle that kills us. It's awful, exhausting and leaves so many unanswered questions. We don't do so well in the middle. It is excruciating. Things move too slow to even chart or measure progress. And this middle is where we live most of our lives. It's a lesson the universe is hell bent on teaching us. It is five minutes after you get your period when you are trying to get pregnant. It is week 10-35 of pregnancy. It's when you are waking every three hours and thinking- "if only they would sleep through the night." 

When it comes to kids, there is always a middle.

It was when Parker was 4 months old, realizing Greyson had autism, and therefore, P's chances were much higher. It was waiting. Painful waiting for 12 months from that fear until the signs I looked for every day showed up. God, that was so the middle. 

Some of our middles are tiny and hard- my hair just got fried and I had to cut inches I didn't want to off. I still have inches of dead that I will have to slowly wait to cut off. And now I hate my choppy, not me color hair. And hair grows so fricking slow. I just want to fast forward to the end, but the next 6 months I will have to remain right in the middle of this. Like this, some middles are just uncomfortable. 

But some middles are torture, like waiting to find out if it is cancer. Or waiting to see if the cancer returned. Waiting to find out if it's true. Waiting to see if you got the job or the part. Waiting to see if it was the right decision. Waiting to see what the future holds for you. Waiting until you find out if they are cheating. Waiting for the divorce to be final. Waiting to find out if it was all worth it.

This is life, and the middle, however hard it is (and it is so so hard), means we are alive. We are headed to the end soon enough. And we may find once it's all done and figured out, we wish we could go back to the middle instead. The middles are where strength is born and lessons lie. The middle is where character is formed and we become real. We become who we are. 

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We took the boys jumping. I realized my favorite part is that moment right in the middle. When you're at the top and your stomach doesn't know if it's so scary or so fun, and your hair is fluffed high and you can't stop grinning. Sometimes the middle is where all the good stuff is at.

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And I remember now, as I approach the end of this particular phase, there will be a million more beginnings in my life still. But this is going to ache for a minute. We are constantly ending, beginning and right in the middle of so many things in life. The ride is far from over, until we leave this earth, a new beginning is always on its way. 

We just have to find a way to find the joy in all the parts. And be grateful we get to experience them.

Monday, January 9, 2017

you just wait

Many people with autism want to know what to expect, and what is expected from them. Many people without autism want that too. We may just need it to a slightly lesser degree.  I want that so much my brain feels fuzzy and anxious in its absence. 

Oftentimes, from even before conception we are buying, What to Expect When You're Expecting. Thinking that a single book can actually answer such a thing. (That's funny). We buy it anyway though, and it really does answer a lot. Maybe even at least1%. But when it comes to parenthood, there is so much more that is absolutely unexpected.

And if we aren't gathering information from books or the Internet, people are offering it freely.

"You just wait", the sentences start with. And usually whatever comes after that fill in the blank fills me with a renewed sense of dread and fear. You see, I am a control enthusiast, and people like me don't like these confusing and constantly changing variables that we are supposed to just wait to happen at us. A longing for control is adhesively stuck to my bones. I don’t know where it came from and I don't know why it's there, but it has ridden shot gun most of my life. But I'm also an optimist. If a cloud doesn't have a silver lining, I do my best to sew one in. Sometimes I'm an awful seamstress though.

"You just wait until that baby is born", they told my wide eyes and expanding belly. "You will never sleep. Your life will never be the same again." (and you can tell by the way it is said that this is a very very bad thing). "Your body will never be the same. You will never get alone time. Not even to pee." 

And you know what? They were so so right. My first few weeks of parenthood were unbearable. I was so focused on the things that I wished for my son, that I just wasn't. I wasn't a natural. I was a leaky, fluffy emotional wreckage. Sobbing over nothing fitting and exhaustion and breast feeding and isolation. Despite reading ALL the pregnancy books, it all felt so violently unexpected.

"You just wait until they start teething".

"You just wait until they start crawling."

"You just wait until they start walking."

The just waits wouldn't stop. (And PS- it all goes by so fast, so be sure and enjoy every single minute of this torturous waiting and enduring.) So much pressure. So much unexpected. So much fear.

"You just wait until they won't stop talking. They call your name over and over, so many times you go numb to it. "MOM MOM MOM MOM MOM MOM MOM!!!!"

And so I waited. 

And I waited and waited, and still waited some more. My precious baby boy was two, and I was waiting less patiently and more desperately to be called that once. "Mom." I wanted it to happen so I could get annoyed and take it for granted. Because him talking felt like my right.

It didn't come, so we started the Early Intervention process, kicking and screaming (the both of us). Our days were filled with preschool and Speech and Behavior therapy. And autism and developmental delays brought its own criteria of just waits.

"Having a kid with special needs is very hard on your marriage", the classroom Teacher informed me with pity in her eyes after school one day. "Just wait. You and your husband may want to start going to therapy now. And it really causes a lot of resentment in siblings", she said, gesturing towards Parker, the 4 month old younger baby boy strapped on my chest.

Great- my youngest isn't even four months and I am totally screwing him up by an uncontrollable. On top of that she's inferring my developmentally delayed child is a burden on his family, on his siblings, on the world. And I was supposed to just sit here and wait for it.

No wonder I was certain our life was destined for sucktitude. 

"Just wait until they are in school- advocating gets so much harder". 
"Just wait for your first IEP."
"Just wait until the stop sleeping through the night."
"Just wait until you start potty training." 
"Just wait until they hit puberty. It's unbearable."

That's the one I hear all the time now. (All the time.) 

But I'm kind of tired of all the waiting for awfulness to be honest. I have a 7 and 5 year old. Can we just sit and breathe for a few more years please? I can't handle much more than today, and when I try, I can hear myself start to break. Besides, we've made it through so many just waits and we are still alive.

When it comes to autism, or parenting, or life...there is absolutely always a new stage. A just wait to dread. An unexpected that can never ever be thought up or planned for. And if we are new to it, it can be stressful and different and full of additional unexpecteds. It can be hard. 

But sometimes it's so important to stop the waiting and instead ask- Yes, but WHAT ABOUT THE GIFTS? Because no matter the stage, no matter the age- no matter who we are and where we find ourselves- there are always amazing and inspiring gifts waiting to be opened. Don't wait for the gifts at the end of the finish line. They are here waiting for you today.

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And oftentimes they are so glorious they would be impossible to predict or explain. There are so (SO) many just waits that are overflowing with good. Things that are meaningful and edit my life is ways better and smarter than I ever could on my own.

We must share the good just waits, because they exist and when we look back we realize they have been woven throughout our entire history. It's truly that easy to rewrite our story. 

Make a choice to live a life in which you stop waiting, and you instead start living.

"Just wait", I tell beautiful you with the expanding belly. "Gosh, there's nothing more insane and amazing and miraculous than growing an entire human being. It's so good that I can't even explain it without coffee, and legs tucked under me on the sofa, and 1,000 sighs and tear drops and laughs. I don't even remember who I was before I was a mom. Seeing my boys born is the closest I've been to God in my entire life. Just wait, it's so good, you are so lucky."

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I think back to the beginning of my parenthood journey with new eyes. Yes, I was leaky and hormonal and felt so inept and so scared. But I also felt love so big it felt like insanity, and a starving willingness to become good at being a Mom because it was so good and so important. I felt so many good things I never could have expected into being. I felt my knees shake in awe every time he yawned his little baby yawn and stretched with his arms overhead. Awe that I was entrusted with the greatest gift there ever was to receive.

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To breathe their breath feels like living. To watch them grow has expanded my heart and mind in ways unimaginable and unexplainable with words. Whatever stage you find yourself in your life... Just wait. It's going to be so hard, my friend. And scary and make you question if you are enough. (Which you are.) But also, without a single tiny doubt- It's going to be amazing.

And also, after lots of therapy and many long years, they both call me Mom now. And it was so worth the wait. It will happen for you too...just wait.

Much Love,

Thursday, January 5, 2017

2017 in action

A brand new year means new possibility. It can also have a bit of the Mondays feeling though. Time to get back into the chaos and perform. It can mean a lot of pressure to become the perfect version of you and finally get organized or skinny or whatever the hell it is we use to tell ourselves we aren't good enough.

At this time of year, I try and tread lightly. For me, Winter brings a melancholy that would only be weighted down by a list of resolutions. A list of little words yelling, "You are doing this life thing wrong you idiot!" I already have an internal asshole that likes to question what I do and think and say all year round. I call him "Gary". Gary does NOT need a wingman. Gary needs a muzzle.

It's so easy to forget what matters most to us. And it's so hard to live an intention filled life. But I think we all want that. I think somewhere inside, we actually need it. It is my fear that when I die my only regrets will be that I did not live enough, I did not love enough, and I did not focus on the right things. Spiritual guru, Deepak Chopra says, "An intention is a directed impulse of consciousness that contains the seed form of that which you aim to create. Like real seeds, intentions can’t grow if you hold on to them. Only when you release your intentions into the fertile depths of your consciousness can they grow and flourish." So for me, all good thoughts must be born as intentions, and then planted into the world.

And since we are the boss of our own life, it is our job to make sure we create the life we want while simultaneously existing with the things we didn't want to come into our lives. We can't blame those circumstances as an excuse for unhappiness- because we deserve more from our one given life. I don't think we have those challenges to ruin us. No siree- quite the opposite. I believe we have those lessons in order to learn how to be the me we were always meant to be. They can help us focus on what is important, and learn how to let go. Those challenges are lessons we all need, and only in pain can we find true growth. 

This is my fourth year of picking three ideas to guide my words and actions for a new year. When it comes to picking words, here are my rules: 

They must be phrased in the positive (Like a social story! Autism has taught me so much)
They can't come from a place of brokenness (like we are unorganized or fat or a bad wife or human or mom)
They need to be measurable. No- "Be kind," unless we have specific ideas in mind that we want to carry out- answer what does kind look like in action?

See what happens when a Type A tries to come up with some intentions? I LOVE RULES! Unless they are broken. Then I love rewriting rules!!!

So, here are my words for this year.

1. Health: Mental and Physical
2. Writing/Reading/Learning about my craft
3. Gratitude and Gratitude in Action

Health is a big one for me. For awhile there, I put my own physical health on hold while we were in Early Intervention survival mode. Going to the doctor was not preventative, it was to fix what was broken. I didn't go to the dentist for five- yes FIVE years. I was three years late on my mammogram. Last year I started to take care of me better, and it helped me see just how important it is. I got caught up on all my appointments (Mammogram, eye doc, dentist, Endo and more- check check check check!) and I plan to continue treating my health like a priority. This includes working out regularly, and taking a list of supplements in addition to healthyish foods. Sunday-Thursday I'm pretty healthy, and over the weekend I am sooooo not. I need this balance in my life. And I need fat and sugar!!! 

I'm also going to start seeing a therapist just for me. It is my belief that everyone needs a Shrink. I have high anxiety and am prone to depression. Every time I mention this, someone inevitably says, "Oh yes. Moms of kids with autism really need to take care of themselves and go to therapy." While yes, that is true- it also discounts the importance of mental health and the importance of therapy for EVERYONE. It assumes that you are entitled to therapy or anxiety ONLY if you have a kids with super powers. I think it's important to mention this is how I'm wired and has always been a part of me. I was prone to this brain pain way way before kids and way before autism. And to be honest- many of my biggest stressors and ALL of my "The straw that broke the camel's back" usually have nothing to do with autism. 

I intend to work on the book I am writing, "Little Light Bulbs Daily." Here's a synopsis...

Chrissy Kelly’s enviable life – handsome husband, great job, house on the beach, beautiful baby boy, and another one on the way – shatters on impact when her adorable son, Greyson, is diagnosed with autism. And just as she’d gathered up all the pieces again, his younger brother Parker receives the same diagnosis, smashing this meticulous, hyper-organized, Type A mom's world into a million more little pieces.

Little Light Bulbs aims to be the book Chrissy searched for in vain when her world came crashing down. She found countless grieving memoirs, platitudinous “recovery” guides and manuals for living with the disorder. But she never found a book that promised she could laugh again. Little Light Bulbs chronicles the tiniest of realizations that the bottomless well of pain she’s enduring might just help her find herself and find a purpose in her life she didn’t even know was missing.

But Little Light Bulbs isn’t just for the parents of kids on the spectrum. It’s for anyone who’s ever been so scared they didn’t dare dream of being happy again. It’s for anyone who felt so isolated by their fear that they nearly suffocated themselves with grief. It’s for anyone who needs hope and perspective instead of a bulleted list that pretends to fix the unfixable. Chrissy’s raw, vulnerable and honest writing style sanitizes nothing for readers on her journey. It’s going to hurt like hell, but she shows them that, if they tackle it with humor, grace and an open heart, it might just also be amazing.

My youngest, Parker will be starting to go to school soon, and it will give me a little extra time to write. I also want to read books that inspire me, and learn more about how to be a good writer. 

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I believe all the hype that says grateful people are happier people. 

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He is my poster child for happy.

Two psychologists, Dr. Robert A. Emmons of the University of California, Davis, and Dr. Michael E. McCullough of the University of Miami, have done much of the research on gratitude. In one study, they asked all participants to write a few sentences each week, focusing on particular topics.

One group wrote about things they were grateful for that had occurred during the week. A second group wrote about daily irritations or things that had displeased them, and the third wrote about events that had affected them (with no emphasis on them being positive or negative). After 10 weeks, those who wrote about gratitude were more optimistic and felt better about their lives. Surprisingly, they also exercised more and had fewer visits to physicians than those who focused on sources of aggravation.

There's so much Science focusing on the benefit of gratitude.

Sometimes I'll admit though- when you're in the thick of it, sometimes gratitude is the last feeling I am feeling. I want to wallow and kick gratitude in the shins. But I also want to be happy, and live a life with meaning, so gratitude for the win.

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I have a little notebook in my nightstand and every night I am writing down three things I was grateful for that day. They don't have to be big and sweeping, I just have to mean it (Yesterday mine were peanut butter, black pens and Jack the dog.) 

I also intend on carrying out gratitude in action. I am grateful for my community, so I will find ways to contribute to it. I am grateful for being in a position where I can be an autism advocate, not just for my boys but for all kids with autism, so I will continue to help reach the people who may need my 

Writing down your intentions is key in carrying them out. That way we can contribute in big and small ways and hold ourselves accountable. You may even want to buy a new blank notebook. As a little girl I remember my Dad telling me about a 1979 Harvard MBA Study. Interviewers asked graduates about their goals. Of the graduates:

  • 84% had no goals
  • 13% had goals-but only in their head
  • 3% had clear, written goals and plans to accomplish them. 

Ten years later these students were interviewed again. The 13% with goals not committed to paper were earning twice as much as the 84% who had no goals at all. And the 3% with clear, written goals- were earning ten times as much as the other 97% PUT TOGETHER. Pretty amazing-right?

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Who wants to join me and come up with some intentions? Or do you already have some? I'd love for you to share yours with me. Here's to an amazing 2017. May it be a year filled with growth, love and strength.

Much Love,