No IDEA What She’s Talking About…

I don’t get into sharing political views very often.  It’s somewhat private to me – and part of that is my own understanding of how each of has our own reality.  Whatever that reality is, is correct and right to us.  That reality helps us to decide what issues are most important and how we approach learning about and advocating for those issues.

First…let me say that Tucker is a Freshman in High School and is on a 504 Plan.  His Special Education resources are minimal.  However, in his younger years – we were fully ‘on.’  Physical Therapy, Occupational Therapy, Speech/Language Therapy, Special Education Teachers, School Psychologists – the whole nine yards…some days, it felt like ten.

So – my reality is this.  I am an advocate for Special Education.  My son no longer needs the services, because he had the services.  However, a day doesn’t go by when I don’t think about where we would be if not for these services (and people)?  I do not want to think about it.

I have great concern today.  Someone sent me a link to read about Ms. DeVos’ hearing (our Secretary of Education nominee).  I chose to not read a reporter’s words.  As I often do, I chose to find the transcript and read it for myself.   What you’ll find below is that transcript and my commentary (in bold).  If you choose to follow the link this conversation begins around 2:34.

Sen. Collins:  Thank you, Mr Chairman.  I cannot help but think it gives my friends on the other side of the aisle Good job being non-partisan in an education hearing that is about KIDS.  Can we get along for kids, at least?  have used their time to ask questions rather than complaining about the lack of a second round, they each would have been able to get in a second question.  I used 15 second of my time to make that point.  Commitment to education, any suggestion such as Wes made earlier that your nomination is linked to your political contribution is really unfair and unwarranted.  Bla bla bla…okay…can we stop with this and just get to the questions that people really want to hear? And I just want to say that for the record.  Good for you – seriously, it’s like arguing with a three-year old.  Seriously…because who is going to read the record?  People like me, yes.  People who think this behavior is ridiculous on BOTH sides of the aisle.    I now would like to move on to some questions about how you view the Federal role in education versus the State and Local role. Finally. I want to put aside the DC Opportunity Scholarship Program because Congress’ relationship to the District of Columbia is unique.  And I want to ask you, at what level of government do you believe that decisions about charter school and vouchers should be made?  Is that the Federal Role, or is that a state role?

Ms. DeVos:  Thank you for that question.  I really enjoyed the conversation we had in your office. I wonder if there were snacks. Let me respond to your question about Federal versus State and Local rule by saying, I absolutely support the fact it is a State rule and State decision what kind of offering there might be with regards to choices and education.  As we discussed in our office, Maine has a unique situation with students attending school on island and in rural areas. Huh…I’m in Iowa – never thought about that.  It makes sense – our country is massive and different people have different experiences.  Our bus picks up our children and takes them to a school 10 miles away.  I wonder how kids in rural Montana get to school.  Not many people there…probably takes forever, plus the winter weather. Yuck.  I’m going to do some research on that.  The next time my kids complain about the bus ride…I’ll show them what children in Montana go through!  It suggest that the right answer for Maine is not the right answer for Indiana or any State.  I would not support a Federal mandate or Federal role in dictating those. 

Sen. Collins:  I am glad to hear that.  I have heard repeatedly from school officials, whether teacherrs or superintendents, that the same action the Federal Government could take would be to fulfill the promise of the 1975 Individuals with Disability to Education  Act Hey – that’s the IDEA act…that’s super important to me…to fund 40% of the additional cost of education a special needs child.  It has been many years since that law was passed.  We have never come close to the 40%.  Would you commit to taking a look at the funding of the department to see if we could do a better job of moving toward fulfillment of that promise?  That is an action that would help every single school district in this country.

Ms. DeVos:  Senator, absolutely I would commit to that if confirmed. No kidding.  Good for you.  I like you ( in this moment).  I actually think this is an area that could be considered for an approach that would be somewhat different, I like different and innovative – as long as we protect our most vulnerable children and that maybe the money should follow individual students instead of going to the states. That sounds like a cluster**** -I wouldn’t want that job.  Attaching that money to students and having it follow them?  Sounds like more bureaucracy and MORE government instead of less.  Humph.  She did say maybe – so I’m not getting too fired up.  I say some pretty ridiculous stuff when brainstorming as well. I think that is something that we could discuss.  I look forward to talking about that with the members of this with preparing students, informing them before they enter college.  I know the TRIO program helps to mentor and prepare students that might not otherwise have an opportunity.  Better tag Emily in this discussion – she’ll want to know this is mentioned That is a very important and valid one to look at, or perhaps, is there another and more effective way to advance that or replicate that?  Or use that in a new way to help increase the participation of students that may not otherwise pursue higher education and complete it. Education is BOSS, truth.  

Sen. Collins:  Thank you.

Sen. Alexander:  Thank you, Senator Collins.  Senator Hassan.  I wonder where Senator Hassan is from. Thanks, Alexa – she’s from New Hampshire.  Her birthday is Feb. 27 – cool, mine is Feb. 25th.  Her name is Maggie – I dig that.  All Maggies I know are fun people.

Sen. Hassan: Thank you, Mr. Chairman and Ranking Member Murray.  I look forward to working on this committee and appreciate the opportunity to participate.  Mrs. DeVos, it is nice to see you again.  Thank you for being here today, your family as well. That was nice to recognize her family is there with her.  And I think all of us here share a commitment to public education and making sure the standards to democracy.  I would echo my colleagues’ call for another round of questions, because I think our job here is not to talk about ideas  but actually to drill down how this actually works in practice. Right on, lady!  A little less talk and a lot more action – let’s get some sh*t done!!! And so, I want to talk about one of those situation you begin to touch on in my office when we met.  It has a little bit of what Senator Collins was talking about in terms of full commitment to students with disabilities and what Senator was talking about with qualification for children with dyslexia.  My son, Ben, experiences Cerebral Palsy.  Oh man…this isn’t just an issue to her.  It’s HER issue.  She has skin in the game.  She’s a pig not a chicken (in reference to breakfast – bacon or eggs.  Big difference here).  I’ve always wondered if I’m pronouncing that right.  Is it cerebral ….like that rhymes with terrible – or cerebral kind of like cereal bowl…is it one of those words that can be said both ways?  I hate that.  He cannot speak or use his fingers, but is smart and the best kid on Earth, if I do say so myself.  OF COURSE HE IS…good mama, right there. 

He got a quality public education at our local school.  Awesome.  Not all schools do a great job – we know this. He is a graduate of Exeter Academy High School in Exeter, New Hampshire.  Upon further research, her husband is the Principal there..so that was handy… He worked so hard to make sure he had the right to that education.  Warrior mom. I am concerned that with students who experience disabilities receive a publicly funded voucher to attend a private school, they often don’t receive adequate resources and in some case have to fight over their legal right over the IDEA.  Huh.  Interesting.  So — if you receive a voucher to a Public School you don’t always get the SpEd services?  Interesting…thinking..Do you think families should have a recourse in the courts in their child’s education does not adequately meet his or her needs, whether they get a voucher or more public and traditional? Yes.  Is this a question?  Of course…all children deserve a quality education – SpEd or not. Not a hard question.  All children are worthy.

Ms. DeVos:  Thank you for the question.  I appreciate our meeting earlier last week.  Let me begin by saying I appreciate and dancing I think that is a C-Span typo, unless they were dancing in her office.  If so, I wonder what to?  Abba?  Maggie was born in 1958 – which means when she was 20. “Aint No Mountain High Enough” was a big hit.  Everyone dances to Diana Ross.  It’s part of being an American. Wish I would have been invited to the dance party.  I could talk some education stuff too… had the opportunity with your son Ben, to find the right opportunity for him Let’s be honest – it helps if you have $ – REGARDLESS of which side of the aisle you are on…and Maggie went to Brown, was a healthcare executive in Boston…but whatever.  I would advocate for all parents to be able to have that opportunity to choose the right school. Here, here!

Sen.  Hassan:  I had the opportunity to send him to the same public school that my daughter went to because law required that that school provide him resources that were never invited before that law was passed because it was hard.  Rolling eyes.  Not at Hassan or DeVos but at the ‘it’s so difficult’ argument.  Really?  It’s difficult to PROVIDE the services.  Try needing the services….FOR A LIFETIME.  So the question is, will you enforce the law with regard to kids with disabilities if the voucher program did allow them to go someplace else?  And the school said, no, it is too expensive we don’t want to do it. So…she’s asking – if a family wants to send their child somewhere else, with a voucher – should the school have to ‘honor’ their special needs and serve them.  

Ms. DeVos:  There are great program already in place like in Ohio.  I wonder if other people still shout O-HIO from the Drew Carey show like I do every time I read the word. Sam and his mom are here today, beneficiary of the John Peterson Special Needs Scholarship Program.  Ummm…you didn’t answer the question.

Sen. Hassan:  I understand that.  But excuse me for interrupting.  What I am asking you is, there is at least one voucher program which makes students sign away their right before they can get that voucher.  Trigger words.  “Signing away rights” ALWAYS makes me cringe.  Now I’m really listening.   I think that is fundamentally wrong, and I think it will mean that students with disabilities cannot use the voucher system that the Department under your leadership might start.  So I want to know whether you will enforce and whether you will make sure that children with disabilities do not have to sign away their legal rights in order to get a voucher should the voucher program be developed.  Not a hard question here.  If you want to do a voucher program and if a student wants to take their voucher and go somewhere else to school – will that school be required to provide special education services (if needed)?  Please say yes…I don’t want to get fired up today.  

Ms. DeVos:  I talk about this program were 31,000 are taking advantage, and 93% of the parents utilizing the voucher are please with it as opposed to 30%.  Ummm…you still didn’t answer the question, like not even close.

Sen. Hassan:  That is not the question I asked.  For right now, I will move on to one final question I really do with we had a second round.  There is a lot here that is critical to our students with disabilities.  With all due respect, Mrs. Voss, has not answered my question, but because we have not a second round, I am trying to follow up on a question you asked….NOOOOO…MAKE HER ANSWER THE QUESTION

Then I calmed down – it is JUST a hearing anyway.  How much can you REALLY learn about a person while being grilled by a committee of folks who are inherently ‘for’ or ‘against’ you just because of what side of the aisle you sit on…dumb, dumb, dumb.

But then…about an hour later (3:23)

Sen. Hassan:  I want to go back to the Individual with Disabilities in Education Act.  That is a Federal Law. Oh yes, let’s do that!

Ms. DeVos:  Federal law must be followed where Federal dollars are in play. Sensical, enough.

Sen.  Hassan:  Were you unaware that it is a Federal Law? Eyebrows furrow.  What a silly question – kind of disrespectful.  If she’s about to be Secretary of Education, certainly she knows about the groundbreaking IDEA.

Ms. DeVos:  I may have confused it. I have no appropriate words.  Yes, no one person can know everything…but IDEA?  Yeah…that’s kind of MAJOR in the world of education.

Sen.  Hassan:  Guarantees to students with disabilities to that they are given a high-quality education with their peers – one reason it is difficult to have this hearing and fully understand your perspective – we do know that children with disabilities have gone with a voucher to their school because of their disabilty, they have to leave the school, the school keep the money, and they go back to public schools, which have less resources for them.  Many of us see this as a potential for turning our public schools into warehouse.  The most challenging kids with disabilities or the kids who parents cannot afford to make up the difference between the voucher and the cost of education.  I would urge you to become familiar with the IDEA act.  I’m concerned that you seem so unfamiliar with it, speechless…and that RARELY happens to me and use them to support voucher schools that have not honored, that have made students find a way to their rights that this law enforces.  That is very troubling to me. Let me break this down.  So…the kiddo wants to go to a different school for whatever reason.  I have friends who homeschool, private school, magnet school, and/or charter school – so I get the ‘public school’ isn’t for everyone. They take the voucher to the school of their choice with them.  But, then that school can’t fulfill the promises in IDEA.  So, if the parents want to get the ‘best’ education and the IDEA promises…they have to go back to a public school.  BUT…the money for that kiddo stays at the first school…so the Public School ends up short on $…which then will have to be made up in raising local taxes (eventually).  

Ms. DeVos:  If confirmed, I will be very sensitive to the special needs students. SENSITIVE.  YOU’LL BE SENSITIVE.  ARE YOU FREAKING KIDDING ME.  SENSITIVE?  I just can’t even…what else are you going to say here?  What a BS answer. ‘If confirmed, I will take away their rights.  If confirmed, I will make sure the $ doesn’t go with them.”  Duh…you aren’t going to say those things because then EVERYONE would get fired up….instead, you’ll be very generic…and sensitive.  

Sen. Hassan:  It is not about sensitivity. Get it, girl. It is ensuring that every child has equal access to a high quality education.  YES.  The reality is that the vouchers you support do not always come out that way.  That is why it is something we need to continue to explore. 

Ms. DeVos:  That is correct.  

That’s all.  I’m leaving it right there for all of you.   I understand it’s only a hearing, I understand ACTUAL policy isn’t made in this moment.  Regardless, this is real life.  Please, can we take the ‘politics’ out of this and think about our children.  This could be the very real future for so many children – children just like Tucker.  It won’t effect Tucker now, but it could have then.

Left out.

Once again.

our-greatest-national-treasure-is-the-minds-of-our-children

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On the Rise of A-Holes…

It’s been a wild month around here.  I’ve wanted to write, but needed to get a place where I could write.  I’m certainly not referring to a physical place, but to a settled mental space.

I’m still not sure I’m there; honestly, I’m not sure I’ll ever be there again.  However, maybe writing this will provide some level of catharsis.

Lately, my brain has felt a bit like a misfired firework.  That picture below is the perfect description.  Normally my brain feels like a ‘perfect’ firework.  Always firing, always energetic, always moving…often outward.

misfired

I’m at a time in my life where it just feels…well…screwy.  Right now…my brain is the green firework.

This parenting gig?  It’s hard.  I don’t mean in the sleepless nights and getting pooped on hard.  I mean that’s no fun…but whew, this shit is for real.  I’m not getting into specific details but I recently had to be a ‘real’ parent.  Some folks have called me ‘brave.’  That description seems off to me.  I’m not brave.  I did what needed to be done.  It was not fun.  I didn’t take pleasure from it.  I wasn’t sitting in the corner with a smug look,  maniacal laugh, watching my parenting at work.  I was curled into a ball in my bed, sobbing – knowing that I may have caused irreparable harm to my child’s psyche.

Have you ever done that?  Don’t feed me be a BS line about how ‘it was the right thing.’  I know that already, it doesn’t fix the suck factor.  As I said that night, “Sometimes a parent just has to make unpopular decisions, because it is what needs to be done.”  Picking up the pieces is one thing, picking up the pieces that you helped shatter is another.

Why?  Because it’s not just that moment.  It’s every moment after that.

I know I’m not the first or last to experience this moment of parenting – but when your parents said to you, “This hurts me more than it hurts you.’ deal?  Woah.  When you have to experience that moment as a parent it sucks big.  HUGE.  Like monumental, really.

I’m lost.
I’m exhausted.
I’m overwhelmed.

It’s true.  I’m a hot mess.  I am the Captain of the Struggle Bus…yes, not just a passenger – the Captain.  I’m crying at the drop of a hat.  I’m feeling like I could puke at any given moment.

Yet, I’m trying to hold it all together…during finals week, nonetheless.

I’m wondering what it’s like for other parents.   The truth is, it’s different for each and every one of us, right ?  Each and every one of us has a different struggle in trying to do our best to raise human beings that aren’t assholes.

Sorry for the cussing, but it’s just where I am.  A very real place – and that is where this writing is going.  If the word offends you, you should probably stop reading.  Maybe that should be our ultimate goal?  Don’t raise an a-hole.

Sounds good to me.  It seems like it would ‘solve’ so many of the larger issues in today’s society.  But, we don’t celebrate that, do we?  Here is what we do celebrate

  • Academic honor rolls
  • Big scholarships
  • Getting the lead
  • Free tuition
  • Starting on teams
  • High scores on standardized tests
  • Breaking records
  • What else would you like to add to this list?

Maybe I’m going to start giving out awards, too.  My award?  The “Not an A-Hole” certificate.

Yesterday I walked to class reading an article about Aleppo.  My heart sank.  I’m not going to get political about this.  I just want a basic conversation.  A conversation about the rise of a-holes in our world.  No, it’s not happening in our country (as in Aleppo is not in the United States); but some people there are being real a-holes to other people.  I guess I feel like that IS my problem.  Maybe the certificate should be named, “Protector Against A-Holes.”

Here is what is really on my mind.  We don’t really care as a population, do we?

I mean…anymore it doesn’t feel like we really care that much if people are a-holes.

My mom recently said to me, “I’m glad I’m not raising kids now.  What is all of this?  Gender reveal parties? Graduation parties that cost thousands with bands and lovely catered foods?  All of this driving kids around to tournament nonsense?  Do parents really think they have the next NBA player on their hands?  Get real.  Prom dresses that cost as much as your wedding dress?  It’s ridiculous.  It’s out of control.  All of this stress parents refer to?  It’s on them.  You signed your kids up.  You said yes. ”

She’s right you know.  Know what she focused on when raised children?  Not raising ‘A-Holes.’  Thanks, mom.  If I was an a-hole I would have enjoyed that awful parenting moment that you know about – but I didn’t.  I was in the fetal position and pretty darn close to thumb-sucking.  My brother also isn’t an a-hole.  So, good work mom…good work (and dad, of course).

This is the stuff I do have figured out. My children are people I would like to be friends with as an adult.  They aren’t rude or ego-bearing.  They like to discuss real-world topics (a riveting discussion about Putin was had at breakfast this morning). They are kind and compassionate.  They are empathetic (not pathetic – Tucker misheard me once.  I guaranteed him I did NOT think he was pathetic). They are funny and clever.  They have opinions and yet, listen to others.

What’s the problem with that?  Sounds like someone you would want to be friends with, yes?  Me too.

My daughter received a purple ribbon on a band solo this week.  A friend of hers came running over to see how she did.  The friend was SUPER excited to get a blue ribbon.  I noticed as the friend was talking she slowly moved her evaluation sheet and purple ribbon behind her back. She listened to her friend and gave her a high-five.  When her friend asked how she did, she said, “I did the best I could and I’m happy with that.”  Then, they hugged and went their separate ways.

I told her how proud I was of her hard work AND her modesty.  She knew that ‘bragging’ about her purple ribbon may hurt her friend.   No worries though, she bragged plenty on the way home – to me and I was VERY happy to oblige in her bragadociousness (I love making up words)

The point?  She is not an asshole.  That makes me happy.

The point?  Even though I crushed his world, Tucker woke up the next morning and asked me to help him fix ‘this thing.’  He never once attacked me as a parent.  He never called me b*tch or told me how unfair the decision was.  He never did this.  Not one bit.  Know why?  Because he’s not an asshole either.  That makes me happy.

The stuff I don’t have figured out yet?  It’s the stuff that society seems to celebrate and reward, the stuff on that list above.

My brain feels like that firework because there is a mismatch in what I believe is most important and what society really rewards.  I think to myself…”Maybe I’ve been doing this all wrong. I was focused on not raising assholes. I should be focused on achievements on paper, trophies on shelves, plaques on walls. ”

I know better and so do you.

So, this mama is taking a deep breath and continuing down this path.

My children may not be award winners, high achievers, team starters, record breakers…or let me be honest…they may not be ‘the best’ at anything, ever.

But.

They are not assholes.

And THAT is enough.

Safe Places & Safe Spaces

A couple weeks ago I blogged about our experience in the transition from Middle School to High School.  I was (and still am) SO SO SO impressed by our Assistant Principal.  I affectionately refer to him as Principal Snapple…check that post here.

At the end of that post I promised to write about our very first 504 meeting.  I’m all for holding that promise, so here we go.

We’re beginning a new chapter in this life.  Off the IEP, onto the 504.

One of my favorite moments in Tucker’s educational process is gathering teachers in a common place and telling them the story of Tucker.  One thing becomes abundantly clear…

Like autism itself, his story is so different.

Different than ‘other kids’ who have autism.
Different than ‘other kids’ who are neurotypical.

This makes it difficult.  Difficult to explain.  Difficult to advocate.  Difficult to persuade.

Maybe we’ve done too well?  He’s developed these coping strategies really well. REALLY, REALLY well…so well that others may not believe anything is different. He seems so…um…get ready for it…I hate using this word…normal (insert *cringe* here).

But, he’s anything but normal –  he’s remarkable.

So, there I sat in a room full of teachers – and it’s odd.  It’s odd because I’m also a teacher and a researcher and an advocate…and (most of all) a mom. Managing those tensions in my life can, at times,  prove to be difficult.  A constant state of push and pull between who I am in that space in life.  My brain begins to swirl.

As a teacher…Don’t put another thing on their plate – they already have so much.
As a researcher…Don’t fill the time with talk of proprioceptive and interoceptive challenges – these are busy, busy folks, stay on point.
As an advocate…Don’t expect them to care about autism as much as you care about autism.
As a mom…Don’t cry. Seriously.  Don’t cry.

In these difficult moments I often channel something wise told to me by my parents or grandparents.  Something soothing…something that will bring clarity.  My dad often said, ‘fair is not equal, and equal is not fair.’  The older I get, the more I experience life with Tucker I realize this. It reminds me of this picture…

fairandequal

(Okay…let’s be honest.  Anyone who knows Tuck will giggle at this picture – you know, because he’s like a giant. So don’t take this picture as a literal representation of his needs)

He simply needs a boost.  With that boost he is absolutely capable of doing everything that EVERY. OTHER. STUDENT. is doing at that school.  Period.

So, what did I do?

I told Tucker’s story. Margaret Wheatley wrote, “You can’t hate someone whose story you know.”   I believe this wholeheartedly.  If people would simply provide space in their hearts and minds to hear and feel his story, they would understand.  They would understand where we’ve been, how we’ve arrived here, and the place in which we currently exist.  When we finished I asked them, above all things to…

Provide a safe place, a safe space for him.  A place or him to feel loved, wanted, and needed – and a space for him to continue to grow.  

I left that meeting with hope.  I left that meeting believing that his teachers are those blocks of fairness.  I left that meeting knowing those blocks of  support would allow him to see the world like everyone else.  I left that meeting smiling and reassured.

And…for the most part, it’s been true.  For the most part, these teachers are reaching out when they have ideas.  They are reaching out when something seems ‘off.’  They are working at constructing those boosting blocks.

Most of all?  Their emails begin like this,

“First, just let me tell how much I enjoy Tucker…”
“I have to tell you that I think Tucker is very funny…”
“That kid of yours?  He’s so very kind…”

That is how I know safe places and safe spaces abound…it’s also how I know they will be an important part of Tucker’s next chapter.  This chapter will be full of new thoughts and exciting revelations.  A chapter that will end with what will be the beginning of the rest of his life.

Coming to Terms

Something really fantastic has been happening in our home.

Something that I had always hoped would happen.

As parents, we hypothesize certain parenting behaviors will work…but, let’s be honest, it’s a crapshoot. (I have no idea what that phrase really means…but I do know how to use it.)  No matter what we’re going to screw some stuff up – and are hopeful that MAYBE…just maybe, we’ll get something right.

From the very beginning we were honest with Tucker.  We told him why he was different.  We’ve shared why he may struggle in school.  We promised we would be right by his side – always – rooting for him, cheering for him, advocating for him.

Those times were often filled with tears for his struggle.

Now?

Now…we’ve begun to root WITH him, cheer WITH him, and advocate WITH him.

These times are often filled with tears from his struggle.

My heart is in a constant battle…jump into my throat with anxiousness or jump out of my chest with pride.

He’s loving himself.  Oh man…he’s really loving himself.  AND – not in a I’m too cool for school or I’m too awesome or I’m so special way…but in an ‘I’m different…and that can be pretty awesome‘ way.  Shouldn’t we all be so lucky?

It started about six weeks ago. My two children were having a discussion about the plan for a Friday night at the dinner table.

Estelle was pressing Tucker for more and more details.  What time is the game?  What time are you leaving for the game?  Where is the game?  When will you get to play in the game?

Finally, Tucker stood up.  He took his plate to the sink.  He came back to the table.  I could tell he was irritated.  He stood over her and my stomach dropped a bit…what was he doing?!?!  He looked at his sister – IN HER EYES – and said, “Why are you being so Tucker-ee?” We all froze.  He continued.  “Why are you needing every detail of the night?!?!?”

We all froze.

We all looked at each other.  He got it.  He gets it.  Then he smiled…and all of us laughed like we hadn’t laughed in  months.  The kind of laugh where you bend over and let it all out.

Finally, Estelle answered, “Well…why are you being so Estelle-like?”

Another round of laughter…and the tears that came were tears of laughter and relief.  This is the deal.  He’s learned that we are all different…AND we can (and should) find humor in our unique ways of living life.

It happened in our house, unbridled acceptance led to a recognition of unconditional love.

Then…a couple of weeks later it happened again.  He’s so very literal…SO VERY LITERAL.  He had a Doctor appointment.  I’m not sure I’ve ever seen a doctor laugh so hard.  Here is what I posted on Facebook…

fullsizerender

So…you’re laughing, yes?

Did you notice who commented?  Tucker did.  Did you see what he commented?  ‘You’re all welcome.’

It happened online, unbridled acceptance led to a recognition of unconditional love.

Tucker will be confirmed at the end of this month.  Two weeks ago he read his faith statement to our congregation.  In that statement he wrote (and then read aloud),

One of my favorite songs is by TobyMac.  It is called, Beyond Me.  I’d like to share some of the song.

Call it a reason to retreat
I got some dreams that are bigger than me
I might be outmatched, outsized, the underdog in the fight of my life
Is it so crazy to believe

In this first part he sings, “I might be outmatched, outsized, the underdog in the fight of my life”  I can feel that because I’ve been made fun of and had difficult times because my brain is different than most people. But then he sings about his dreams being beyond him. That’s like me.  God gives me the faith that I’m different, but I know can do it.

Not a dry eye was found in our house.  Did you see that again? That, my friends, is an acceptance of self.

It happened in the public sphere, unbridled acceptance led to a recognition of unconditional love.

During this moment in our history it feels we need a bit more of this…unbridled acceptance that leads to a recognition of unconditional love.   Thank you for your part in Tucker’s recognition and/or acceptance, no matter how big or small it may have been.  Now…go out and give it to someone else…

Principal Snapple

Honesty check.

Late last spring I wrote about how wonderful it was that Tucker graduated from his IEP.  I didn’t feel that great about it.  I did…but…I didn’t.  Folks said, “Oh, how wonderful.”  “That is so great.”  “Good for him!”  “What an accomplishment.”

I smiled…because that’s what I do.  Fake it ’til I make it.

Well…I made it.  So, now what?

Well…I spent LOTS of time this summer learning about 504 plasn and how we could make a plan with our school to ensure Tucker’s continued success.

What is the difference?  In a nutshell, an IEP is about modification.  It’s about change; tracking and assessing that change.  In an IEP, goals are created.  These goals can be quite varied:  social goals, emotional goals, academic goals, occupational therapy goals, speech and language therapy goals.  (You name it – we’ve had each type of goal.)  Then, your child’s educational team tracks progress towards those goals.  Once these goals are met you create new goals…or in his case, you ‘graduate.’

Graduation from an IEP is always the ultimate goal, but not commonly achieved.

Tucker has never been common.

A 504 is about accommodation.

What is good about this?  Well…it’s a bit more ‘loose’ so it can look more like a qualitative assessment and strategic plan.  It’s the story of what works and what doesn’t.  It’s about making adjustments in his day to enhance his educational experience.

A 504 is about accommodation.

What is bad about this?  Well…it’s a bit more ‘loose.’  It’s more difficult to track what exactly is working and why.  Regardless, A 504 is much more suited to addressing issues outlined in the Ziggurat Model.

Adding to the challenge?  It’s a transition year.  Transition years are historically more difficult than any other year, a transition to High School nonetheless.  Our new faculty members don’t know Tucker.  They don’t know where he has been, how far he has come, or what struggles he (may) continue to face.  They don’t know how funny he is or how much he treasures structure.

In August the new Assistant Principal and I began communicating about Tucker.  He’s new…and let me tell you.  He’s good stuff.  I often refer to people as Snapple…’made of the best stuff on earth.’

He’s Snapple.

To give Principal Snapple a snapshot before we met I put together a document. In that document?

  • IEP History – Including his first and last goals as well as excerpts from exit interviews with his 7th/8th grade teachers.  This was INVALUABLE data because it was in teacherspeak…what he excelled at and areas still under construction.
  • Information about Executive Functioning – This in the area that Tucker still struggles with the most:  impulse control, emotional control, flexible thinking, working memory, self-monitoring, planning/prioritizing, task initiation, and organization.  I addressed each of these areas and introduced the idea of a School Coach.  Someone consistent to help him stay organized, stay on task and on track, and most of all…someone to listen.
  • Specific Academic Accommodations – I listed the accommodations he could have received in previous years:  extra test time, testing in a quiet area, seating close to the teacher, chunking assignments, written instructions for assignments, and frequent breaks
  • A list of specific sensory triggers

That was followed by a meeting request with his first semester teachers and reassessment schedule (for the 504 plan)  – mid semester, pre spring semester, end of spring semester.

Finally, our goals and promises as parents.  Our promise to work with.  Our promise to be active and engaged.  Our promise to have their back.  Our promise to provide feedback.  Our promise to be proactive.  Our promise to have like messages.  Our promise to be consistent and firm.  Our promise to always, always love him.

Do you know what Principal Snapple did?  He asked me to come meet with him.  So I did.  We talked about Tuck.  We reviewed the information I put together.  Then he said something like this…”I think Tucker would be best served by one of our intake conference spots.  That means that all of his teachers – even Study Hall – would come together and hear about what a wonderful, unique student he is.  How would you feel about that?”

Mr. Snapple, for sure…made of the best stuff on earth.

What happened at that meeting?  Well…I try to keep posts around 500 words and am already over 700, so I guess you have to wait until the next post. 😉

The In-Between

Sitting. Waiting. Pacing. Sitting. Waiting.

Here we are.

Tucker is having some minor surgery this morning.  It shouldn’t be a big deal-he has a nasty, non-working vein in his left leg (otherwise known as a varicose vein).  It could be an anomaly.  It could be something.  We’ll find out soon.  Sitting in the in-between.

He refers to it as his, ‘Old lady surgery.’  We have his Grandma to thank for that one…lol.

I sent my husband a message earlier in the week, ‘I get why he asks all these questions…but it’s driving me batty.’  This week I’ve felt a lot of time in the in-between.

How long will the surgery take? I don’t know.
Are they going to put on a mask and make me go to sleep? I don’t know.
Will I have to have a shot? I don’t know.
When will I be able to play football? I don’t know.
Will I be able to run by Monday? I don’t know.
Where did Dr. J go to college? I don’t know.
What type of food do they eat in Sri Lanka [where Dr. J is from]? I don’t know.

And finally…

If my body just absorbs the bad vein after the laser kills it, will I poop it out? No, definitely not.  My very rudimentary understanding of the human body allowed me to answer that question.

I know why he asks all of these questions.  He hates the unknown and herein lies the difference.  Lots of folks hate the unknown, but can still move on with their daily life.  He cannot.  He gets stuck.  We get stuck.  In the in-between.

Not knowing is paralyzing him.
Not knowing the answers is paralyzing to me.

His life has been my life.  I’ve always been a step ahead of him; knowing the answer, advocating, and being able to provide full explanations.  But not this time…this time I just don’t know.  I’m caught in-between.

In-between.  He’s frustrated that I don’t know the answers.  I’m frustrated that he’s asking questions I don’t know.

It’s likely a sign of things to come.

My goal has always been for him (and any of my children) to learn to advocate for himself, to learn to ask the questions he needs answered, to know what he needs to be successful.

He’s off his IEP and we’re moving to a 504 plan (which I’ll cover in more detail later). The focus of the 504 is on accommodation instead of modification.  It makes sense in this natural progression.  It’s the in-between.

Accommodation.  In-between modifying life and fully experiencing unadulterated life. It’s the moment you hope for – and dread – all at the same time. Modifying life is much more safe…but then I remind myself the advice I give to my graduating students.

‘The fence is the worst place to be. Make a decision. Even if you land on the wrong side you’re moving.’
‘Failure is good and necessary. Success is sweetest once you’ve failed.’
‘Rainbows occur between storm and shine.  Enjoy the view.’

It’s a heckuva lot easier to give that advice to others than to inherently know that it applies to your child…and you.

It’s 10:35.  His appointment was at 10:30.  Here comes the storm of questions.

Sitting. Waiting. Pacing. Sitting. Waiting.

Here we are.

10:51.

I’m not sure there is much worse than being off schedule with a spectrum kiddo.  Oh wait there is.  Being off schedule for something you don’t know much about.

We were instructed to bring one of the prescribed Valium. I’m beginning to wonder if it is for me or for him?

Sitting in the in-between.  I guess I’ll try to focus on that rainbow until the sunshine appears again.

rainbow

Update:  The procedure went well and Tucker is already back to football practice!

Leaving On a Jet Plane

It’s been awhile since I’ve written – not because there hasn’t been anything worthy of writing, but I just haven’t felt the urge.   Hopefully you sense my passion in writing  – for me, that’s a part of the process.  I must feel it so…well…so you can feel it.

No worries, folks – I still have seven single-spaced pages of topics to write about.  Today’s post wasn’t on that list, but someday soon I will get back to that list.  Today’s post has been brewing for two weeks.  Today Tucker left for the weekend…so I can write this without him barging in wondering why I’m sobbing.

Two weeks ago I had a week-long leadership training on the East Coast. I flew with a friend on the way there, but flew alone on the way home.

I was quite early for my flight, so I had plenty of time to people watch.  I’m still fairly certain Darius Rucker was waiting for the same flight, but when I walked by him humming ‘Wagon Wheel’ he did not blink or turn my way.  He must have wanted to remain incognito.

I boarded the plane, stowed my carry on, and found my seat.  I pulled a book from my bag, buckled my seat belt, leaned back, and closed my eyes.  It was a phenomenal week, but I was relieved to be on my way home.  I missed my children, I missed my husband, I even missed the dog. I missed doing laundry and pulling weeds (okay..maybe not so much the weeds…but I did miss working outside).

Then the thoughts crept in.  The thoughts of the crash.  I began to wonder if everyone has those thoughts – rationally, I know airplanes are safe – but the thoughts still enter.

I opened my book to try to distract my brain…but my neurotic thoughts wouldn’t stop.

What if this plane goes down?
What if the last phone call was just that…the last phone call?
What emails did I leave unanswered?
What text messages did I forget to send?
Finally…if the plane went down would I have time to make a call?

That’s when the tears began.  I could feel them welling in my eyes and I was hoping and praying that my eyelids would simply swell to keep them all in.  Seriously, who wants to sit beside a 40-year-old woman who is crying on an airplane?

In that moment I thought about my children.  I knew Estelle would be devastated.  I also see and know her inner strength.  I knew people would be able to get to her and help her through.  She’s tough as nails.  She’s strong and independent.  She’s resilient, talented, and so very bright.  She knows how to stand up for herself and isn’t afraid to make decisions that SHE wants.  I knew all of this…

Then I thought about Tucker.  If I had a last phone call, what would I say to Tucker.

I’d tell him he can do anything he puts his mind to.  I’d tell him, “Even if you think you cannot.  You can.  You can because I always believed you can. You have conquered more than you’ll ever recognize.”

I’d tell him never to give up on himself.  I’d tell him, “None of us have given up.  Each and every person you have touched believes in you; from your Kindergarten teacher to your football coach.  Every person has believed in you and not just because we have to or because we should.  We all believe in you because you are remarkable.  YOU make us want more for YOU.  Now, believe in yourself, allow yourself to be loved and supported.”

I’d tell him to pause when he needs.  I’d tell him, “When your brain can’t do it, just close your eyes as I’ve taught you.  I know these moments bother you.  Do what we’ve always done; close your eyes, pause, and let your brain sort it out. Trust that your brain will, just give it a little time.”

I’d tell him to keep talking for himself.  I’d tell him, “I waited for your voice.  Let people hear your voice and your ideas.  They are worth every moment and if people try to cut you off, keep talking.  Your voice is the most important voice in your life.”

I’d tell him to advocate for himself.  I’d tell him, “You know how, simply have the courage to do so.”

I’d tell him to never let Autism get in the way.   I’d tell him, “This thing.  Autism.  It is part of you – sometimes a big part, other times a glimmer – but it’s yours.  Own it.  Realize how it makes you such an amazing person. Have pride in who you are.”

I’d tell him it’s okay to cry. I’d tell him, “Cry and cry often.  Think of tears as a cleansing of your sad heart.”

I’d tell him to hold his sister tight.  I’d tell him, ” Together, you are what remains of me.”

I’d tell him the truth.  I’d tell him, “You are the light of my life, the joy in my heart. Your eyes make me smile and your smile, in my eyes, gives me hope. Hope for all children – that so much can be accomplished when all things are done in love. Loving you and learning about how you tick has been a pleasure – and I wouldn’t have wanted it any other way.”

Finally, I’d give him parting advice.  “Fly Tucker.  Fly.  Do all the things.  Be all you can.  I know you can.  I’ve always known you could.”

airplane-md

Then, I grabbed the sleeve on my shirt, allowed my eyes to burst open, and pretended the story I was reading was incredibly sad.

When I arrived at my location my husband hugged me, Estelle hugged me and kissed my cheek, and then Tucker’s very large man-boy body engulfed me.

He turned my head and put it on his chest
He applied one hand on my back and the other to the side of my face
His chin rested on the top of my head
He squeezed and whispered, “Life is better with you here.”

You too, Tucker…you too.

The End of An Era

I haven’t written in a while.  Mostly because I’ve been trying to wrap my head about some pretty big changes in our lives.

On Tuesday, February 9 we had Tucker’s IEP Renewal Meeting.  I’ve written an entire series about the IEP experience…

From a Parent Perspective
From a Special Education Teacher Perspective
From a the Teacher Perspective
From a Student Perspective

I knew it was coming.  We all knew it was coming.

This IEP was different.  I asked Tucker if he wanted to come.  At first, he said no and I was relieved.  I know I’m old school, but I like to have my own teacher time.  Yes, my children should be responsible for their own learning and be able to communicate their  learning and bla bla bla…I get.  Regardless, I like the 1:1 time with their teachers.  I like to ask them honest questions and receive honest answers.

This time, he decided he wanted to know what it was all about.

He called my bluff.  Damn.

It started with me being early and trying to hold it together.  Then a small room.  Then fidgeting.  Then Tucker arrived and I breathed a sigh of relief.  He takes up pretty much the entire doorway…but his twinkling eyes, soft complexion, and sweet smile reassured me it would all be okay.  (Yeah…who’s the ‘real’ adult in this situation?!?!)

We talked about the meeting.  I told him how the meeting would be run.  I told him that he could leave if he became bored – but to do it politely and quietly.  Then, we practiced what ‘politely and quietly’ looked like.

I always wanted to be an actress – he gives me that chance over and over and over again.  Rehearsals for life.

Then, the teachers arrived one by one.  They all smiled.  They all said hello to Tucker and he nodded back.

They went around the table and all said wonderful things…then the Special Education Rep spoke the words I knew were coming. “He’s met all of his goals.  He must graduate from his IEP.”

Tucker politely excused himself.

The teachers left.

Celebrate.
Panic.
Celebrate.
Panic.
Celebrate.
Panic.

Breathe.

Here I was in a room with his Special Education teacher and I was speechless.  I just stared at her and out the window and at the table and back at her.  I took a deep breath and she finally said, “Nikki, he’ll be just fine and if he’s not…you’ll know and you’ll know just what to do.”

Then I sobbed.  In that small room in Tucker’s Middle School.  I sobbed.

She came to the other side of the table and hugged me and said, “You know I don’t get this moment very often.  This is what is supposed to happen.  I feel so lucky that I get to share it with you.”

Snot is now all over my sleeve and mascara is running down my face.

I was able to mutter a thank you.  Then she said, “You know it’s your victory too.  You never let the frustration show.  You advocated in the smartest of ways.  You helped us understand so much about him.  We are better because of you.”

That was NOT helpful to the existing snot situation.

I hugged her again and said, “We are all better because of him.” She agreed and ushered me out the door.

On the way out to my vehicle I stopped and looked towards the heavens.  Religious or not (I happen to be) this was a moment for praise and thanksgiving.  As I climbed in my vehicle and drove away I couldn’t help but to think about all of these meetings.  All of these meetings where I left in tears because I wanted life to be easier for him.  They were over.  In hindsight…they didn’t seem so bad.  Funny how time really does heal.

I called my husband and had to pull over to tell him the news because I couldn’t talk.  Half way through my 25 minute drive to work I had to stop again…it hit me.

How did he do this?

How did he keep up with the academics of his peers and have 27 (yes, 27) different goals in his first nine years of school?  How did he do that?!?!?  It hadn’t occurred to me until that moment that he was not only working on speech and coordination and managing emotions…he was doing everything the other students were doing – math, science, literacy.

How did he spend time with Speech Language Pathologists, Occupational Therapists, Counselors, Physical Therapists and STILL keep up?

Seriously, how did he do that?

When life settled down that night I stood in front of my refrigerator staring at a picture of my brother.  A picture that was taken after a horrible accident.  A picture of him after he had overcome tremendous odds.  A picture that was taken after my parents were told his chances of living were marginal.

I keep that 30+ year old picture there – as a reminder of the strength of the human spirit.  I love that picture.  As I turned around there was Tucker, sitting at the table like every other night.  But tonight, I was overcome with emotion.

There he is, sitting at my kitchen table – a very present reminder of the strength of the human spirit.

So there you have it…I haven’t been able to write because I needed to let enough time pass that I didn’t electrocute myself from crying over my computer.   The tears were certainly present…but in the end a smile crept in.  A smile that is most evidenced by a triumph…a smile of success…a smile that is reminiscent of the strength of the human spirit.

A smile, because of Tucker.

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Namaste

Obviously I am not writing daily.

I’ve had people ask in the past couple of months, “What are you doing with all of your time now?”

Well…

I’m still catching up on organizing my house.
I have more responsibility at work.
I’m doing some consulting.
But the best thing?  Yoga.

I started doing yoga.

Funny, because I thought I would HATE yoga.  The thrill of the run, the feel of the sweat, the absence of breath…that is what I’ve most’ enjoyed’ about exercise.  However, my life, at times, just felt too fast.   Like I was losing control of everything around me and I was feeling helpless.  I was on the outside just watching everything happen or in the center of a tornado watching everything swirl around me.

Often while exercising I would think of other projects, other things, more to be concerned about.  I rarely experienced the ‘flow’ of running or working out – that moment that everything becomes easy because it’s so well-practiced.  This is sometimes called the ‘Runner’s High.’  I arrived there a couple of times…and admittingly,  it did feel very good.

After running a 1/2 marathon my body was just beat up.  I know, people run further than that all the time – but my interest in running was lacking, at best.  Too much training.

So, a friend told me to try yoga.  I rolled my eyes…really? Yoga?  How is THAT exercise?!?!?  Then again…I’m up for trying just about anything.

I started yoga at our local workout facility.  Twice a week.  By the second week I recognized that I may actually like it.  Then, my teacher asked me how long I had been practicing yoga.  I told her about four hours.  She responded, “Well.  You have a very natural aptitude.  I hope you stick with it.”

Two weeks later I purchased an everyday yoga program.  Three days in, I realized how much I loved it.  It was one full hour, every day.  One full hour to clear my brain, to slow down, to concentrate on my breath, and think about how my body actually felt.

Some days I was doing ‘two-a-day’ yoga, one at the workout facility and then another hour with my hubs at night.

I went to yoga one night after a particularly conflict-filled day at work.  I just couldn’t balance, couldn’t clear my head, and I couldn’t get into the pose.  I was *probably* pretty huffy.  I was looking around at everyone else.  I imagine my instructor saw this struggle because she said, “Stop pushing.  Yoga isn’t about pushing.  Yoga meets you where you are.  There is no wrong.  Once that position feels comfortable, move further into it.  Even just 1/4 inch further – that may be enough.  Don’t look at other people.  Yoga is about you and your body.  Meeting  you where you are and taking you just a bit further each time.”

Class finished.  I walked out to my vehicle on that crisp fall day and sat down in the driver’s seat. Clicked my seat belt.  Put the key in the ignition. Then I stopped. I took a deep breath, bowed my head…then the tears began to roll.

Yoga and autism.

Maybe that was what I needed all along.  I needed to just slow down.  I needed to be more mindful of my thoughts, actions, and words.  I needed to be.  Be more.  Be more in the moment.

In my experiences Autism is best served by yoga principles.  Meeting Tucker where he is.  Not comparing, not judging, not pushing.  Meeting him where he is and going just a bit further.  I hate to say we’ve had ‘success’ – because that would imply that something was wrong or needed to be fixed.

There is nothing wrong with him – but, we have had to help him live in this Neurotypical world.  Yes, I wish the world would just automatically and immediately love him and understand him the way we do, but that’s not reality.

So…yoga.

Pushing too hard always resulted in melt down mode.  Pushing too hard always led to regression.  Pushing too hard, it just never worked.

Meeting him where he was?  Getting comfortable and developing understanding in that moment and then moving another 1/4 inch?  That is what worked.

Last week was Tucker’s IEP Renewal.

He graduated.
I cried.
I haven’t been able to write about it, because every time I see those words, “He graduated.” I cry (including right now).

9 years.  9 years of IEP work.  26 separate goals.

Each goal – met and pushed just a bit. Not so much that it hurt or damaged…but pushed just a bit.

Then again.
And again.
And again.
And again…until we met it and moved on.

Now it’s over…and at the same time…it’s just beginning.

Only one word can describe the journey we have been on and where we are heading.

Namaste.

namaste-meaning

It’s No Biggie

A few weeks ago a colleague of mine and I were sitting in a meeting.

While sitting around a large table some folks became really fired up, voices were raised, huffing and puffing was in full effect.  We were sitting side by side…and just looked at each other.

This colleague is also a good friend of mine and her son has Type 1 Diabetes.  He is four.  She hasn’t had a full night of sleep in over two years – because she (or her guy) gets up every two hours to check their son’s blood sugar.  Her life is her phone, where she can check and track his blood sugar levels in ‘real time’ (which by the way is crazy cool).  A month ago we were again sitting side by side as she checked her phone and turned white.  I told her to leave the meeting.  Nothing was more important in that moment than getting to her son.

She is truly remarkable and so is their family’s story.

So, what does this have to do with autism and this blog?

After this said meeting I looked and her and whispered, “Am I missing something here?  Does it seem like that big of a deal?”  She shook her head and replied, “No.”  Then we smiled at each other…that silent type of smile that both of us just know what the other was thinking.  So, what were we thinking?

It’s no biggie.
Much of life…it’s no biggie.

I don’t have a lot of time (or honestly…energy) to worry about this or that.  Not much time or energy to get upset at this or that.  Why?  Because Tucker has brought real to my life.  He reminds me daily…about what really matters; and therefore, what doesn’t.

In about a month I’m going to turn 40 – and one of the most important life lessons that I have learned this far is that most of it is no biggie.  I say that with a half wink and half-smile smirk.  How I wish I could tell the early 30’s me this very important lesson.

It’s no biggie.
Why is it no biggie?

Well…because I’m too busy being worried about other stuff.

Like…
When I received Tuker’s IEP Renewal letter and the questions were,
“Where do you see Tucker living post secondary?”
“What level of education do you see Tucker pursuing post secondary?”
“What career/profession/vocation do you anticipate Tucker pursuing post secondary?”

Like…
Seeing him not be able to find the words to communicate.

Like…
Watching him struggle to engage with his peers.

Like…
Contorting my body as we converse to try to get him to make some eye contact with me.

Like…
Calming a total meltdown at church because he didn’t know he had to acolyte (yes, all 6’4″ of him…this is getting much more difficult ya’ll)

I guess that’s why most of the time I am so calm.  I recognize that most of life’s issues are really quite small.  Most issues will pass or resolve themselves within a couple of days.  However, my husband would also tell you it’s the very reason to pay close attention when I do get fired up about something…because that something is likely very real.

So what really does matter?

His happiness.
Him feeling loved.
Him understanding his worth.

If it doesn’t affect one of those things…I’m out.  This is the real life lesson for me and maybe for all of us.

What is it that REALLY matters?  Feeling happy, feeling loved, feeling worthwhile.

What if we all arrived to that place?  The place where we removed from our lives those things that make us unhappy, unloved, and unworthy; and added to our lives those things that make us happy, loved, and worthy.  What if our focus was on three questions…

What makes you happy?
What makes you feel loved?
What makes you feel worthwhile?

Do more of these and less of the others.

Like hot tubs on snowy days. Do more of that.

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Thank you, Tucker – for yet another life lesson to make our lives more beautiful.