Tuesday, September 11, 2018

advocacy

You are assigned the role 'advocate' the moment you have a child. Suddenly you are bombarded with choices you must make in the name of this tiny human stranger. Choices over topics you previously most likely have no knowledge of.

"We are here to give Greyson his HepB vaccine", the nurse says with a knock at my hospital door. I don't even know what that is or how you get it- but "Ok...come on in." Another knock- "We need to do Greyson's heel prick test. Just a quick blood draw."I felt so ill prepared. "OK....what is this test for? Will it hurt him?"

To circumsize or not. Vaccinate or delay. Is he getting enough breast milk? Should he be sleeping longer than 2 hours at a stretch? Is it bad to take him out in public? I don't want him getting sick. I didn't know the answers to any of the things, and the advice I got from all over contradicted itself.

There are so many decisions involved in raising a child, and the older they get, the more decisions you must make. And just when I thought I had this parenting gig figured out, Greyson stopped developing at the same rate as kids his own age. This took a need for advocacy up to an entirely new level. My level of knowledge on childhood development and speech delays was 0.0. And suddenly I realized that if I needed to properly advocate for my son, I needed to be an expert on ALL of the things.  Big complicated things I knew nothing about. Things people go to school for years and years to become an expert on. I wanted some PhD equivalent on autism and communication and behavior child development overnight.

And then school started. And I wanted to become an instant expert on Evidence Based Practices (even though I didn't even know there was such a thing at the time), and teaching, and Speech Therapy, and Legal Matters associated with Special Education, and Disability Law and more. At first I just learned on the job as I went along. I assumed that people in their role wanted what was best for my child, and knew better than me so I let them guide me.

I still believe that most people in schools have the best interest of students in mind. The type of person I am must believe that. Luckily people don't have to work too hard to prove who they are, one way or the other. Maya Angelou said, "When someone shows you who you are, believe them." 

But too many times I have encountered situations where resources or personnel needs or classroom needs or a lack of knowledge, or an excess of ego or the need to stay in line with the culture came before the needs of my child. I realized there was a vast difference in understanding of autism and evidence based practises from teacher to teacher in each autism classrooms. I realized that my husband and I were the only people with guaranteed pure intentions wanting nothing other than what our boys need to succeed, based on things the law provides. However, we did not have the knowledge and facts we needed to advocate, which was a problem. How did we know what to ask for, when we didn't even know what the options were, and we also didn't know what our son even needed? How did we know if something was wrong, and more importantly, how did we explain it beyond- My guts says this NO GOOD.

Most parents I've met who I consider incredible advocates, didn't learn about laws, best practice, the Individuals with Disabilities Act, available related service and all facets of their child's disability, as well as all things school culture related until they HAD to. Because something wasn't right- but they weren't sure how to articulate why it wasn't right. That's how I found myself learning about all of those things and more- when Grey was in First Grade. That is when I started reading, researching, and interviewing experts constantly. Even today, as Grey is now a 4th grader, rarely does a day go by when I don't research or read or think about this stuff. (I don't recommend that, but that's how much this is in my blood).  After time, and research, and attending Board and budget meetings, I realized that many of the issues I saw in my school, were actually created by the District- they were systemic. After many meetings and attempts at fixes from bottom to top, I realized my advocacy had to be at the District level. I get ignored and/or patronized or disagreed with A LOT. But I keep at it, constantly reminding myself- Intentions don't come truer than mine. All I want is what is best for all children. My inner voice repeats, You are onto something. Something that isn't supposed to be noticed or talked about. And if it was easy, someone would have fixed this decades ago. 

Recently an outside review was done on my District. You can read it HERE. And the data showed that the things I have been talking about for years was the truth. And it was validating and heartbreaking to read. My husband and I attended a School District Board meeting to hear the Special Education Department summarize the review. When the summary was over, (almost FOUR hours after the meeting started,)  I felt like someone had replaced my stomach with a bowling ball. I thought certainly the summary would share- "We now realize XYZ, which is clearly unacceptable. We need to do better. This is how we will come up with a plan. It won't happen overnight, but it WILL happen." Instead it focused a lot on what they were doing right. Anyone who knows me knows I'm a optimist. I also love to celebrate things going right. But right now, with significant Civil Rights being violated, is NOT a time to celebrate. It's a time for accountability. A time to rebuild. A time for honesty. A time for reflection. It's not a time to celebrate. I felt like they were at a party and I was at a funeral. 

So my husband and I began crafting a message, no more than 3 minutes per the rules, to share at the next meeting. We read and researched and wrote and rewrote. And then we showed up. Sometimes all you need to do to change the world is show up. A bunch.


Right before the meeting started. Date night, at a Board meeting.



I am so proud of Michael. Imagine how much faster the world would change if these seats were filled with parents who want the same thing. To watch it, click HERE and fast forward to 1 hour, 8 minutes in. 




And here are my words. I would be honored if you would watch. My new favorite words are Inclusion starts with me. Ask yourself, how can I use my voice and my circumstances and my environment to fight for inclusion of every form? Inclusion matters, for all kinds of kids. Kids like Parker who have autism. Kids like Coco who don't. When everyone is invited, everyone wins. This is our friend- she goes to therapy with Parker one day a week. She is teaching Parker so much, and Parker is teaching Coco so much too. 






Inclusion also matters for people like Guy. An amazing 12 year old with more wisdom than most adults. 

Guy uses a speaking device like Greyson. And he made my whole day with this message. It gives me fuel to keep up the fight. But I'm looking for a few good women and men to join me. Advocacy seeks us out, in situations we may originally know nothing about. But our gut feels an ache of needed change. That's the sign that advocacy is choosing us. Will you answer its call?

Thursday, September 6, 2018

end of summering

Going

Going

Gone...

We soaked up Summer right until the very last drop. All these memories will go into a box in my mind and wrapped with a bow labeled SUMMER 2018. One day I will revisit them, take them out one by one and examine them. I will remember the feeling of sun burn and the smell of chlorine, and the taste of sunshine, and marvel at how little they looked in the Summer of 2018 and wonder, where has the time gone?

One day when it is cold here and my car shows freezing temps and it is too darn early in the morning, I will go back to this day. To this water. To this feeling.














Over the long Labor Day weekend, we went on a boat with friends. The night before I told Greyson "We ride on boat" with his communication device. "NO BOAT! GREYSON STAY HOME", Grey yelled in response. "I stay at home", I say, correcting his pronoun like a good nagging Mom. "But no- you can't. You will like it." I tell him, because I know his soul better than my own, and I knew this ride would be amazing.


I scoured the internet to find pictures of boats similar to the one we would be riding. Greyson stared at them intently. He started to warm up, while Parker practically sang over and over, "I RIDE BOAT!" smiling the whole time. Finally after examining several different pictures, Greyson warmed to the idea. "Ride boat, no swim Ocean" he conceded. "No swim Ocean!" I agreed, like I agreed that it was the most horrible idea ever, mostly because we were actually going to be on a lake, but either way- I wasn't going to make him. Knowing full well he would on his own. But sometimes we just need someone to feel our pain, meet us where we are at, and to agree.




My crew, there to celebrate the long weekend, and my friend Heather's birthday.

Oh my friend, I am smiling as I tell you, I played like a kid all damn day. I jumped off the boat into the water with Grey- because he loved it and I wanted to love it with him. I was scared because it was high up and I did it anyway. Sometimes he pushes me out of my comfort zone and makes me a better human.



I just realized your buns are hanging out here, Andrea. I'm sorry. But since they are nice buns, I will leave this right here. 




He did this all on his own. The boys were all playing- balancing and knocking each other off of the paddle board. Grey swam out and hung out with them for awhile. My face still hurts from smiling.

I love Summer me and boy do I miss her already. She's not nearly this uptight and all business. When I grow up, I will figure out how to keep Summer me in my mind all year long. Until then I will just keep trying. I will make room to play. 


So many times we grieve the end of the story. The carved stone. The things we long for that are no longer available for us.  Sometimes my mind gets stuck in  - this is how things are and this is how I will always feel. We forget as each new end comes along, that this may also be a beginning. We forget that things change all the time, and so does how we feel. It's a scary, beautiful thing. Things will change- that sucks, and thank goodness. And all we can do is work hard at letting go, moving on and keeping our eyes hopeful for the next good thing. 


Happy end of Summering- 
so much love,

Chrissy

Sunday, August 12, 2018

listening for your soul

We were not created to create perfection. (That is only God's job). When we strive for that, we create so much internal pain. However, we were also not created to be mediocre about the things that matter to us. When we do that- when we accept that from ourselves- we also create so much pain inside ourselves.

Finding the middle ground, whereas we are not reaching relentlessly for perfection, but we are also not giving into mediocre output and apathy- that is where the work of our soul lies. Don't get me wrong- I strive for mediocre in several areas of my life (cooking and cleaning instantly come to mind), but it is in striving for mediocre about the things that catch our heart on fire that hurts us. I think sometimes we are afraid to work hard at the things that matter to us. We are afraid of doing it poorly. Afraid of loving it so much, but not being amazing at it. I have felt that way about taking pictures and about writing. Doing it is the work of my soul. Not doing it for too long feels bad. But at first, not doing it perfectly made me feel like a fraud. Because how can it be the work of my soul, when I am not some Pulitzer Prize winning, New York Times Best list type of gal? I judged myself by the likes, comments and shares. When you start to judge the work of your soul by any kind of outside force- it is no longer the work of your soul. It becomes the work of pleasing others. 


Only in the silence can we hear our soul. We do what makes us come alive because we love it and we need it. When we do it- there is a harmony that goes beyond sensory perception. A harmony that doesn't rely or really care about perfection. On the outside it looks like a kid playing in the sandbox. No rules, pure joy- just happy to be there doing that. It's a harmony that doesn't give a rat's ass if you are perfect at it or not. You just need to do it because it's awesome. The endless brain chatter may tell you otherwise- so instead listen to the silence. When you feel that harmony- that is the real you. 

In high school, I envied perfection. I saw a version of it everywhere I looked. I went to an all girls, private Catholic School. The majority of students had money and big homes and fancy cars. Looking back I can only remember a tiny percentage of the inadequacy I felt, but even that tiny percentage is staggering to recall. My family didn't have money, or a fancy home. Also, I was really stinking awkward and unbearably self-conscience .




I think I was in 7th grade here- but this is pretty much what I looked like my freshman and sophomore year. 

I was Queen of Awkward. President of the awkward club. Add to that I was a big feeler and over-thinker. I wore a gosh awful back brace for scoliosis. I needed braces but didn't have them yet. I longed to be popular and beautiful. I studied those girls like they were a research project. They were so pretty. They all exuded a confidence I tried desperately to fake. They all took up space I didn't think I deserved to take up. Perhaps if I was pretty enough, I could fit in? I wondered. They looked like teenagers, and I looked like a kid. I stopped eating. Not completely, but a dramatic decline. A rice cake and apple here and there. I lost a lot of weight and got a lot of unwanted attention in the form of concern. I remember a trip to the School Counselor's office. She received an anonymous message from another student or teacher about me having an eating disorder and she wanted to check in. I denied everything, and realized I needed to be better about hiding my issues so no one could stop me from controlling my food intake. Somehow, one day this rigid behavior stopped, and I started to rejoin the eating world. But a few years later, it came back again in college. They say anorexia is about control- but I have never felt more out of control in my life. I weighed about 25 pounds less than I do now, which is a ton of weight for someone who is only 5'2". My period stopped. I got lots of good attention. You look amazing! You are so fit! How did you do it?! I thrived off every comment and every person who asked for working out advice. I did it for me, but I also did it for others approval. Desperate to please others, to impress them, desperate to be amazing at something because the truth was- I felt painfully mediocre. After a couple of years of this, I couldn't do it any longer. I couldn't be this any longer. I was lived my life constantly hungry. The ache was felt in the marrow of my bones.  Starving myself was sometimes interrupted by binging on food and throwing it up. I was so exhausted and empty. 


Here I am right before graduating from college. I was starving. For food and for connection.

It took years of really hard work, and working with a therapist who held me accountable to overcome this demon. Food no longer rules my life- something 20 year old me never thought was possible. But that need to please others, to strive for perfection and to be THE BEST at something never went away. It just morphed into other outlets like working out- or on my college studies. My first semester in college I got a 1.67 GPA. Yes, 1.67- that is not a typo. The last two years I got a 4.0. I loved being judged by others, when my output was acceptable, even though I hated it too. But when the outcomes were thin enough or a 4.0- it fueled me. It was a high.

Parenting was the first thing in my life that I adored, but was awful at. I couldn't quit it because I was bad. I also couldn't stay up all night to fix it or make it perfect either. I had to learn to do it imperfectly- but to the best of my ability and be ok with that. And wake up with a willingness to start fresh, pay attention to the details, and give myself grace all over again daily. 

By far, my hardest role as a parent has been as an autism advocate in the school. I've thought long and hard about why this particular role has rendered me on the couch and useless a few times- sobbing and exhausted beyond any physical exhaustion I've ever encountered. I think it's the first BIG thing I've done that is not only NOT for others approval- but has in fact- made others disapprove of me quite aggressively. I don't write much about the retaliation we've experienced from me being "the mom that writes the blog" as well as speaking up in general, because I don't want to match that vibration and I want to keep my eyes and words on what really matters. Also, if I wrote about that- my intentions would be to make bad people look bad. That isn't pure- that's not the work of my soul. That would give me a temporary hit, and then hurt because it's not who I am or who I want to be. So I just keep my intentions pure and focus on what I need to do- but not on how it will be received. That part just isn't my responsibility. 


I always thought if I was ENOUGH (skinny enough, kind enough, hard working enough, empathetic enough, smart enough, understanding enough) everyone would like me. It took me to be this many years old to realize:1. I am already enough 2. No matter who I am or what I do or what I say or don't say- everyone will never all like me. 3. As long as you are doing the work of your soul- with the right intentions- none of the rest of the noise matters. Just keep doing the work, imperfectly with passion. 

It's what you were born to do. 

Wednesday, August 8, 2018

Relentless advocacy

Today was a full day of moming + advocacy. Two of my favorite things to do. Both light a fire under me. I love learning more about both.  Both frustrate, sometimes confuse me and makes me cry. Too much without a break and I burn out. 

But the state of Special Education makes my heart ache so big I can taste it. I’ve tried to quit caring so much and it’s physically impossible. I’ve seen what good can do- it’s amazing. I’ve seen what bad can do- it’s awful. I can’t unsee it. When I try to forget about it- it wakes me up at night. I hear a whisper, What’s next momma- this is your work. What’s next?


Please note his current favorite shoe selection- MY Tory Burch Flip flops. Sure thing, Grey- wear em. You do you. The perfect show attire for a Town Hall meeting.


Here's the thing about advocacy- there is no Manual on Advocating for Dummies. It depends on the size, culture and workings of your District, it depends on what you are advocating for- what is it that is breaking your heart and needs to change? What is the ask? Most of the time, I don't know what I'm doing. Sometimes I quit for the day or the week, or even two. But then I just keep showing up to do something. Sometimes my somethings feel like they were a waste. Like planting seeds that don't grow. That's an important part of the gig- just keep showing up and doing even if the world doesn't change the second you want it to.


Today was Greyson’s (and mine!) first Town Hall meeting for Andrew Janz who is running for Congress. Many politicians list “Public Education” on their platform, but I never hear them talk about it. I never hear them fight for it. I never see them at functions related to public education, other than ribbon cutting type of things. That needs to change, and it’s my job to help be the change I want to see. I just need to find one person in a position of power who genuinely has the capacity and capability of genuinely caring about public education in action, not just in words. 

Universe, hear my words.




Tonight I went to the first School Board meeting for the 2018/2019 school year. The thing about advocacy, is that you have to plant so many seeds...so (SO) many. Especially when your District is 75,000 kids big. You can’t sit back and wait for these seeds to bloom- you have to be off planting and watering more seeds. You may have to go A LONG time between blooms. You may not even see blooms in your lifetime, but still you must believe your work is worthy because it is. And sometimes it’s so hard when people don’t care about the thing you care MOST about. It’s hard to sometimes see politics more important than kids. Those are the things that make me cry and want to give up.

I see how huge this system failed Grey and I can't just walk away knowing there are other kids with needs like Grey’s that don’t have anyone to fight for them. One day I want him back in public school, but not when it looks like this. Some people have told me- You can change systems, so just fight for your kids. Here's the thing: I can't do that. The things my boys need are systemic and the things almost every single Special Education student needs. 

I want the basics: Appropriate caseloads for Teachers, SLPs, Occupational Therapists, no computer speech therapy for kids it isn’t appropriate for (ie- most kids with complex communication needs like autism), training for all Teachers, paras and aides on: autism, behavior, communication, inclusion and Assistive technology. I don’t want inclusion/Least Restrictive Environment to be considered an option that can be ignored- it’s a Federal mandate. I want behavior support for students by qualified individuals. Not being trained on behavior, and dealing with behaviors incorrectly can be dangerous and can cause much more harm than good. I want more transition support for students with autism as they advance to the next grade. I don’t want kids with autism segregated in separate buildings from the General Education population. I want professional, safe and knowledgeable people supporting my sons.

Once upon a time (and even now in moments) I sometimes get angry that I have to do this. Jealous of how much easier school is for families who don’t have a special need student. Sad that the things I am fighting for aren't a given. I thought of going to Board meetings as a burden and something that was getting in the way of me trying to live my life. 

But I realized, that this actually IS my life. It's one of the reasons I’m here on earth. It my duty as a parent and it’s my honor as someone madly in love with Greyson and Parker. It’s my honor for your babies too. So here I sit, scattering seeds, trying to stay hopeful about the bloom.






If they praise you, show up and do the work.
If they criticize you, show up and do the work. 
If no one even notices you, just show up and do the work.
Just keep showing up, doing the work, and leading the way.

Lead with passion.
Fuel up with optimism.
Have faith.
Power up with love.
Maintain hope.
Be stubborn.
Fight the good fight.
Refuse to give up. 
Ignore the critics.
Believe in the impossible. 
Show up.
Do the work. (Jon Gordon)




Monday, August 6, 2018

times are a changin

Reentry is hard.

Over the weekend, we snuck away to Santa Cruz, a city on Central California's Coast. We were there for only 24 hours total, but I can't escape noticing the abrupt change in climate the instant we arrived. No, not just the weather (Santa Cruz- 70 tops, Fresno over 100) but the climate of the neurons in my brain. Sometimes it's good to pack up and leave practically everything about what you do and who you are behind. What you are left with is often the truest form of you.

So short. So fun. We could see the Boardwalk and the Ocean from our hotel room. 









 As soon as they saw them the boys kept asking, "Can I ride rides?!"












So many people share a picture of themselves at the beach and say, "This is my happy place." Well duh- I'm going to guess that 95% of the world would find the beach to be one version of their happy. It is our happy place too. It's a sensory delight and paying attention to its details makes me feel alive. 

I hear the crash of the waves, and then the fizz of the water being pulled back home. Crash....fizz...crash...fizz. Breathing becomes easier. The constant spinning hamster wheel in my head takes a break. I hear the squak of the seagulls, until they are so expected I don't really hear them anymore unless I am listening for it. I hear people talking and children laughing. Squealing with each wave coming in. I squeal with them. How is this world and nature and this ocean not the most amazing thing ever? If there is anything else more squeal worthy I am unaware of that at this time. I smell ocean air, clean, sometimes a little fishy and a sometimes like the best kind of suntan lotion. I feel like it's 1986 and I'm a kid and it's Summer and I've got nothing to do but smile (thanks for those words, Paul Simon).  I see all the things at once, and I don't know where to look first.  The navy blue horizon. The water getting lighter blue and clearer as it gets closer. The wave as it meets the shore, white like the foam on a cappuccino. The beige sand that sparkles like a thousand diamonds when the water overlaps it. I see boats and seagulls and the occasional seal playing its heart out. I see people, all kinds of people wearing all kinds of thing. From skimpy suits to one gentlemen who was wearing full on cargo jeans and heavy duty construction boots. (I really wanted to ask him about that one. I'm sure he had a good story to go along with it.)







The trick is, to find a happy place in the mundane. A happy place in the hard. A happy place when all the ducks aren't in a row and the things are not all figured out. Places are not inherently happy, but people can be. Homes are not happy- but the people in them can be. Fancy beach homes and elegant evenings out aren't important- what matters is who you are with and how you feel. True happy comes from people, including yourself. Not things. My new friend Kylee who writes at Two Pretzels Blog said, "I'm learning that your happy place goes with you. Where you are, it is."

Yes, yes, yes, yes yes. Every damn day I work to find my happy place, in places not notorious for happy. In places like my heart.




A seagull pooped on him. Yes, it's good luck and blah blah blah. That's something we made up because people are uncomfortable with literal and figurative shit. Rains on your wedding day- good luck! Start your period while wearing white jeans- good luck! Your husband cheats on you with your best friend? Such good luck!

Sometimes bird shit is just bird shit. We wash up and move on.



The Boardwalk was loud and peopley and magical. In a deep fried kind of way.





I had to get over the principle of $5 ice cream. It shouldn't be too hard for the don't think twice about ordering a $5 coffee drinker.









School starts a week from today. I am trying to pretend like my nerves are actually just excitement. Last week one morning on the way to therapy, Parker said, "I want school". That brought me peace. He knows the times, they are a-changing soon. Milestones are simply reminders of how fast time flows. It goes that fast every day, but the milestones are our wakeup calls, because boy do we forget a lot. Especially when we are uncomfortable or waiting or in the middle of something hard. 


Come gather 'round people
Wherever you roam
And admit that the waters
Around you have grown
And accept it that soon
You'll be drenched to the bone.
If your time to you
Is worth savin'
Then you better start swimmin'
Or you'll sink like a stone
For the times they are a-changin'.
(Bob Dylan)




(THE END)

And also the beginning...

Wednesday, August 1, 2018

feeling your feelings

It snuck up on me for the first time yesterday. It was too soon so I wasn’t expecting it.

I woke up with a ton pound weight on my chest. It wasn’t thoughts- it was a feeling. A “school is starting soon” feeling that instead feels like I’m coming down with the flu and I don’t quite know what’s wrong with me. Each year that school got worse and worse with Grey, the worse this feeling feels.  I realized late in the afternoon where this achy, ragey, fearful feeling was coming from. I'm not sick, I'm sad. I came down with a case of the sads.

When it comes to sad feelings, I feel like a man with a cold. The tiniest speck of feelings can feel like a boulder in my eye. Tears fly out like a sneeze- seemingly from nowhere. A question about nothing related at all will trigger it, and I will swallow harder and harder to shove my feelings down, usually with zero success. I will cry from hearing "crackers" because I will make Parker peanut butter crackers for his school lunch box and suddenly, I am sad. Sometimes I have been sobbing, and I will say- “Why do I feel THIS much? Why does this hurt so bad?” Feelings so intense they vibrate with physical pain. 



Feelings are not weak. They are human, and sometimes this human experience is excruciating and 1,000 shades in between. Most feelings don't last forever. But sometimes our skin gets too tight, and it takes time to feel stretched out into a new normal again. 


Feeling bad feelings is hard. And it’s also strong. I’ve eaten feelings, starved feelings, drank feelings, ignored feelings and exercised feelings. They never go away- it's like sweeping dirt under the bed. It's like putting band aids on a damn that ultimately explodes. So I try my damndest to feel feelings. And I have to work twice as hard to feel the feelings than I do to ignore them. The good ones are easy. The bad and big ones feel like an epidural-less birth. They trigger other feelings of loss and fear. Because first I'm sad about Summer being over, and then I think Belle our dog is dying. We had a mast cell tumor removed a month or two ago and there might be more. She’s been shitting all over the house, a new behavior for this eleven year old. Michael has been out of town and I’ve been cleaning up shit and feeling bad feelings. And my parents are going to die one day and how do you live after that? And I will die and who will listen to Parker and Greyson breathe at night? Who will know that Parker needs the crust cut off his sandwich? Who will know what each sound of Grey’s mean? Who will take them for McDonald French Fries? 

This is where my brain goes. Over peanut butter crackers. In a second. I get stuck on a loop. I’m hitting the reset button now. 

We feel the biggest over the things we love the most. This kind of love is worth any pain.


I’ll be homeschooling Grey until the start of 2019/2020 school year. After that we will reevaluate. Life is too long to call things forevers. Parker will be starting a new school free from the ghosts that haunted Grey and I at the last place. 

Perspective is my wingman. We can do this. We always do. Beginnings are hard. (So are middles. So are ends.) But the hard stuff makes us who we are more so than the good days.  And when you numb the bad feelings, you numb the good ones too. That's not ok with me. One day soon I’ll be breathing easy again. 

Running from emotions is exhausting. So is feeling bad feelings, but at least this option gives you an end in sight. 

Friday, July 27, 2018

Do your work

Summer. (sigh) The weeks are flying by. I try to linger in the moments to make it last. The hard moments, the days that last forever- I remind myself in those moments- yes, even this is a gift. Summer me is so much more relaxed and calm and fun than back to school me. I have so much more energy to pour into random every day details. We pool. We see friends. We not cook. It's good stuff.

Recently I was lamenting to my friend Wendy. Quotes I made about the importance of Inclusion were published in an article in our local paper. I was telling Wendy- I'm still scared after I speak out. This lingering fear haunts me for a few days. I don't want the wrong people to feel guilty. I don't want it to affect how my boys are treated. All I want to do it tell the truth, and fight for what is right. At the end of my life, I want to know I fought hard for the things that mattered. I want to know I loved hard the people who mattered. I want to know I looked fear in the face and did it anyway. Wendy reminded me- This is your work. Just keep doing your work. Everyone else is responsible for their own work. They have to rest their head on their pillows and know they did a good job. 

My talk with Wendy was an important reminder that Advocacy is my work. (Other peoples feelings are not my work.) Advocacy is a job I never interviewed for, and the only training is messy and on the job as you go along. And the school year is my busy season. I thought now might be a good time to talk to you about the foundation of Special Education. Understanding rights will help you advocate on the grass roots level for your child or student. In the current culture and climate- person by person, school by school, district by district is the only way we can create any kind of change.

I am a champion of Teachers. Teachers, I see you. I see your lack of resources. I see your inability to constructively criticize the system to your administration because it will cause apathy at best, and retaliation for being the squeaky wheel at worst. Teaching is not administration. There are amazing teachers doing their work. Keep doing your work- which means showing up every day and giving your best to those students in your care. Your work is THE MOST important part of it all. Sometimes the man behind the curtain forgets that. Sometimes I have to advocate for resources for your classroom to ensure my boys get what they need. Needs and resources don't always line up, and you are sometimes expected to theoretically feed 100 people with 10 meals. Advocating for resources is my work and I am happy to do it.

One of the most important things to understand is "The Individuals with Disabilities Education Act"- also called I-D-E-A (you can't call it the word - 'Idea'- I don't know why, you have to say each letter.)




The Individuals with Disabilities Education Act (IDEA) is a law that makes available a free appropriate public education to eligible children with disabilities throughout the nation and ensures special education and related services to those children. Originally adopted in 1975 and amended in 2004, the IDEA aims to curb educational problems associated with low expectations and insufficient focus on alternative research, teaching methods, and tools.

IDEA governs how states and public agencies provide early intervention, special education, and related services to more than 6.5 million eligible infants, toddlers, children, and youth with disabilities.

Infants and toddlers, birth through age two, with disabilities and their families receive early intervention services under IDEA Part C. Children and youth ages three through 21 receive special education and related services under IDEA Part B.

If you want to read the IDEA entirely, click HERE.




I'll summarize some important things to know, including the six pillars of IDEA.




These descriptions were written by Matthew Saleh, a Research Fellow at Cornell University’s Employment and Disability Institute and a Research Associate at the Campaign for Educational Equity at Teachers College, Columbia University. He received his J.D. from the Syracuse University College of Law and is currently a doctoral candidate at Columbia University. I added some additional comments in red!
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1. Free Appropriate Public Education
Under the IDEA, every child with a disability is entitled to a Free Appropriate Public Education (FAPE). The IDEA emphasizes special education and related services, which should be designed to meet a child’s “unique needs and prepare them for further education, employment, and independent living.” NOTE: the high standards! 

Furthermore, courts have held that the IDEA requires schools to prepare Individualized Education Plans, which confer “meaningful educational benefit” to children with disabilities. The “meaningful educational benefit” requirement includes a focus on raised student expectations, appropriate progress, and transition into postsecondary education and independent living. Meaningful educational benefit is HUGE. If your child isn't reaching goals year after year than it can be argued they are not making adequate progress. 

Public schools and local school boards are responsible for ensuring that every child with a disability receives a FAPE.

2.  Appropriate Evaluation
The IDEA requires that schools conduct “appropriate evaluations”of students who are suspected of having a disability. An appropriate evaluation must be implemented by a team of knowledgeable and trained evaluators, must utilize sound evaluation materials and procedures, and must be administered on a non-discriminatory basis.

Children should not be subjected to unnecessary assessments or testing, and evaluations must be geared toward planning for the child’s education and future instruction. Finally, an appropriate evaluation must determine and make recommendations regarding a child’s eligibility for special education services in a timely manner.

If you do not agree with an evaluation done by the District, In the US, by Federal Law, you can request that an outside provider of your choosing, do a new evaluation called an Independent Educational Evaluation- IEE- for your child, at the cost of the District. You must put it in writing, and the District has 30 days to respond to your request. They can either agree to it, or file for a Due Process Hearing to show why the IEE is not necessary. 

3.  Individualized Education Plan
The Individualized Education Plan (IEP) was established by the IDEA to help ensure every child’s access to a Free Appropriate Public Education. The IEP is a written document, developed by an IEP team, which draws upon existing evaluation information in order to meet a student’s unique educational needs.

Under the IDEA, an IEP must include information regarding a student’s present levels of educational performance, annual goals and benchmarking objectives, services and supplementary aids to be received, and a detailed explanation of instances where a student is not participating in the general classroom and why.

An IEP is also required to include information regarding consistent reporting on student progress as well as “transition” to adult life. Finally, it is required that an IEP account for the planning concerns of the parents and child, the strengths of a particular child, and the specific “academic, developmental, and functional needs” of the child.

EVERYTHING needs to be on the IEP. Spell out any requests for Inclusion on the IEP- be specific. If you want specific written information weekly/monthly etc. such as confirmation that Speech or OT occurred per the IEP, make the request at the IEP. 

In the case Endrew F. v. Douglas County School District, the U.S. Supreme Court ruled in favor of a higher standard of education for children with disabilities. Schools must provide a meaningful education in which children show significant progress and are given substantially equal opportunities as  typical children. IEP goals must be appropriate, meaningful, and a child needs to make progress.

4. Least Restrictive Environment
The IDEA places a strong emphasis on placement in a general education setting. Under the IDEA, a student is guaranteed placement in the Least Restrictive Environment (LRE) possible. Therefore, an IEP team must explore a number of alternatives for enabling a student to participate in the general education classroom. These may include: classroom modifications, supplemental aids and services, alternative instructional methods, etc.

If an IEP team determines that a student cannot be satisfactorily educated in a general education setting, then the team must make responsible efforts to determine the LRE for that student outside of the general classroom. Inclusion is NOT black and white. It can also happen beyond academic settings, such as library, lunch (not sitting on opposite sides of the table), field trips, art, PE, assemblies and more.) You can also make specific requests for Reverse Inclusion- where General Education Students come into Special Education Classrooms to work on goals or social skills. 



5.  Parent Participation
The IDEA has a special provision for “parent participation in placement decisions.” Under this provision, state educational agencies and local school boards must ensure that the parents of a child with a disability are members of any group that makes decisions regarding the placement and LRE of that child. You can also request parent education. 

Parents have the right to equal participation in this process, and are entitled to notification of a planned evaluation, access to planning and evaluation materials, and involvement in all meetings regarding their child’s placement. Additionally, parents retain the right to refuse further evaluation of their child. Both students and parents must be invited to IEP meetings, and the IDEA explicitly establishes a role for the parent as equal participant and decision maker.

6.  Procedural Safeguards
Finally, the IDEA establishes procedural safeguards to help parents and students enforce their rights under federal law. The primary purpose of this requirement is twofold: safeguards protect parental access to information pertaining to placement and transition planning; and procedures are put in place to resolve disagreements between parents and schools regarding the placement of a student.

Under the IDEA procedural safeguards, parents have a right to review all educational records pertaining to their child, receive notice prior to meetings about their child’s evaluation, placement, or identification, and to obtain an Independent Educational Evaluation (IEE) for consideration at such meetings.

If disagreements arise, parents have the right to request mediation or due process hearings with state-level education agencies, and beyond that may appeal the decision in state or federal court.

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Understanding IDEA, has been imperative in my advocacy work. I've met with Teachers who are not familiar with the specifics of the act. In touring schools for Parker, I asked one Teacher how placement in the Least Restrictive Environment, and Inclusion worked in her classroom. She told me that "If a student can keep up with the common core standards in a subject area and they aren't disruptive, then they can go into a General Education Classroom." This method doesn't jive with Federal mandate of educating students in the Least Restrictive Environment as mentioned above. We can not expect Teachers to know all the provisions of IDEA- but it's great when they do. It's up to us to do the research.

It's also important to understand exactly what a Free and Appropriate Public Education (FAPE) means. First of all- there is NO one size fits all educational requirements for any child receiving Special Education. It's important to understand what your child needs- but also- know the types of things that will interfere with your child's ability to receive FAPE. Not receiving any of the pillars of IDEA can interfere with your child's ability to receive FAPE. Not receiving the appropriate Related Services can interfere with your child's ability to receive FAPE. The term related services means things needed to help a child access their education. Examples include: transportation, speech-language pathology and audiology services, interpreting services, psychological services, physical and occupational therapy, recreation, including therapeutic recreation, social work services, school nurse services, counseling services, including rehabilitation counseling, orientation and mobility services, and medical services. For example, if a child has a Speech Disorder, they will need help with Speech and Language in order to be able to learn- or to be able to access their education. 

One thing that has helped me embrace my role as an advocate, is that I believe this is exactly what I am supposed to be doing with my life. 

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. And fighting for that is my work. It's one of the best and hardest jobs I've ever had. 





And it is so worth it. 

Wednesday, July 18, 2018

random stream of consciousness

The sooner you realize
Your life circumstances are on purpose (yep, even the crap ones.)
The happier you will be

or

You can hate them
And fight them
And blame them for your unhappiness

You can find excuses to stay stuck
You will prove yourself right
See! No one would be OK in this life.

And that becomes burdensome truth.

However, the sooner you let go
The sooner you will find
You



I swore I wouldn't complain about the heat. Because Summer is so much my favorite that I want to marry it. So instead I will complain about boob sweat, and the fact that my car steering wheel is so hot it could fry an egg. It feels too hot to go swimming. Today I stupidly wore jeans, and I was so hot that before Grey had Speech Therapy, we stopped and bought me some new light weight linen pants at TJ Maxx which I then immediately changed into in the parking lot. I swear they are even cooler than shorts, so I might just wear them for a week at a time. If you see me wearing them daily, don't bring this up.


We've been continuing our plan of Summering our faces off.




Parker one morning before heading out for Behavior Therapy.  Carrying just the bare necessities: An Eiffel Tower, a Yo Gabba Gabba Boom Box and a guitar.  He's so Steve Martin in The Jerk.




Recently I took Grey to Toys R Us to show him it is closed. He would tell us, "Let's go to Toys R Us" 3,456 times a day. Telling him they were closed didn't make any difference, so I showed him. He was surprisingly chill about it. Now he only asks 20 times a day, so I call that progress. (insert laughing emoji here.) Grey also knows most good things in life comes from Amazon Prime anyway. A few kind folks have told me that the one on the other side of town hasn't closed yet, but I'm going to leave that coffin lid closed!

Sometimes we all need a reminder that something is over. Closed for business. No more. Especially if repeated thoughts about it aren't serving you. The more we think about it, the more we keep it alive. Yes, we can multi-task and do a million things at once. But there is only a finite amount of time to think each day. Why waste it on fear, anger, remorse and regret? When you find yourself going down that thinking path, think of something you are passionate about instead. 

Think good thoughts. You deserve it. Stay cool my friend.

Love,
Chrissy