What acceptance looks like right now

So, I haven't written a blog post in awhile...like two years.

As we get close to our yearly IEP meeting, I have been thinking more about this journey with this amazing kid.

This year, he is in a mainstream classroom most of the day. He still sees a speech therapist, occupational therapist and physical therapist regularly.

This year, we will do a three year re-evaluation. I am as eager for this meeting as I am dreading it. In this meeting, I hope we will determine if (and how much) he is gaining ground academically. I can read the IEP reports, but I can never quite tell how close he is to the standard.

Although I am fighting it, I feel many old fears resurfacing. I am a bit fragile and vulnerable.

Throughout the years, it's not uncommon for a fellow, well-meaning momma to tell me that parenting Anthy is no different from parenting any other child...that there are no guarantees. That each child's future is just as uncertain as Anthy's.

I have finally thought of a way to explain to everyone (or just you and the people in my head) why it's not completely accurate.

This is my perspective. I do not pretend to speak for anyone other than myself.

It's true that everyone's future is questionable. 

I know that as well as anyone. 

If you are raising a child with special needs (no matter what the special needs are), though, your question marks are bigger. Period. The more severe the needs, the bigger the question mark.

My question marks are bigger. 

It's not a competition; that's just a fact.

Those question marks get heavy sometimes. I get tired and scared and vulnerable because they get heavy. That's not a pity party; that's an explanation.

I can know that he will be ok, AND I can know that his life will be tougher because of his disability. That's not a paradox, that's life.

I can rejoice in the wondrous child he is, AND I can grieve because he's eight years old and struggles to tell any coherent story about his day.

That's not capitulation, that's acceptance...what acceptance looks like to me right now anyway.

Fun = Stress = Peace

Crazy equation, I know.

We (me and kiddos and friends) had a super fun adventurous time at a local water park on Sunday evening.  Three days later and Anthy's every nerve (metaphorically) exploded in his body leaving a sticky, gooey, emotional mess (literal) of a 6 year old boy tonight...

(Nervous level severe and beyond...)

As I am walking out of his bedroom after (hopefully) his body is able to let down enough to rest, I had that moment when my true zen momma understanding came whispering through.  I get it.  

This will always happen...  

Understand?

This.will.always.happen.

There is no fixing this.  He y'am who he y'am.  He had fun on Sunday....  He did....  I promise....  There might even be smiling pictures to prove it.  Yet, his senses eventually fight back hard and payback's a witch.  This will always happen.  He has super fun = He pays a price three days later.  

His brain and his body are wired differently.  Our best bet is to help him adjust, adapt, and. if necessary for social purposes, camouflage his needs into something he and the people around him can live with. Someday (hopefully), it will be a blip on the screen to those standing next Anthy three days after some super fun.  Someday, he will have the skills to give himself what he needs to restore.  That is our goal and our hope.

There was a day years ago when I sobbed, "This will never change" into a phone and a sympathetic friend's ear on a desperate day as I curled on the floor next to my bed.  

Today is not that day.  

Today is the day when I can feel the small tug of grief for the loss of an imaginary, unrealistic dream.  Today is the day when I can feel that sadness while I stand next to my deep well of gratitude and joy.  

This will always happen....

and I will always be short...

and Chris will always need blood pressure medicine...

Whatevs...

I'm as surprised as you are, really

I really didn't think I would make it this long.  

Here are some interesting things about the last 24 hours...

1) I learned that brown sugar is just white sugar that was tinted brown with molasses...

2) I realized that blackberries are quite sweet all by themselves...

3) I was able to sit in front of a basket of warm rolls at Metamora Fields and did not eat even one.  

For reals!  

I mean...That's a first.  I have NEVER sat in front of a basket of rolls at a restaurant and not eaten at least one.  Even when I decided I wanted to be 109 pounds and restricted myself to only 1000 calories a day.  

(I know, I know.  I was young and stupid and only 40...)

4) If I don't think too hard about what I am doing, it is not that daunting.  

I am treating caffeine, white sugar, and white flour as if my body were allergic to them.  I understand that this might be offensive to people who actually have food allergies, but I'm hoping they cut me a break because I haven't had white caffeine sugar lately...or something like that.  I'll think hard about another way to think of it later, 'kay?

5) I desperately hope that I don't find out anything too bad about honey, agave nectar, or maple syrup.  I am trying to use them sparingly, but my working belief is that none of them count as "white sugar."  My breakfast today was a couple of healthy banana "cookies" (recipe found on AllRecipes) that were baked with some honey and maple syrup.

6) I have been "anti-"artificial sweetener for some years now.   

I am pretty proud that I have avoided them...so far...in the past 50 hours. 

7) I have to give myself a pass for items that I just could not have known had these ingredients.

At Metamora Fields, I opted for the special.  It was mahi-mahi in pesto sauce (acceptable), green beans, and risotto.  A quick Google search reassured me that risotto is a rice dish and not a pasta dish (hard to tell just by looking at it).  So, I cleaned my plate...thinking "I've been without sugar so long, these green beans taste sweet!"  

Managing enough self-discipline not to lick the plate, I tell the waiter how much I loved the green beans.  He says, "Yes, they are great!  The cook adds a caramel topping that is fabulous." 

...crap...caramel topping?  Pretty sure that is made with sugar!  

It is possible I belabored that point so much that Chris had to gently suggest that I let it go.

90 days to go...

The Voice(s)

"In America...first you get zee sugar...then you get zee women..." - Homer Simpson

I am on day 2 (1 1/2, really) of my new existence without caffeine, white sugar, white flour.  My only "cheating" has been a cup of Tazo Zen Green Tea.

So far it has been more difficult physically than I would have expected.  I knew that I was an emotional eater.  I am all about the "I've had a bad day, and I deserve a cookie".  

But I did not know that going cold turkey would give me such a nasty headache, or leave me feeling just physically yucky.  This is what the voices in my head sounded like pretty much all day yesterday.

Head Voice #1: "Why am I doing this?  I feel awful.  I would feel so much better if I had a cup of coffee."

Head Voice #2: "I am doing to this to eliminate pain.  Remember?  Cutting these foods out will help the pain."

Head Voice #1:  "But I'm in pain now!  Who said this would help?"

Head Voice #2: "That lady with the medical degree on her wall."

Head Voice #1: "How about just one cookie?"

Head Voice #2: "No."

Head Voice #1: "OK..."

5 minutes later...

Head Voice #3: "I can't live this way!  This is not normal.  Why am I doing this?"

and so on...

At any rate, this is probably the longest I have ever gone without refined sugar in my life, INCLUDING the months I had gestational diabetes.  My goal is three months, so I have 91 days left...

Climbing down off the white horse(s)

So, Anthy's fine.  All is pretty well here.  That's why I've not had much to write.  That's the good news...

What's not so good is that I have been having some considerable pain.  We will call it "lady pain", and leave out the details many of you really don't want to read.

This pain has lasted a couple of years and I have finally called it.  I am done.  I am willing to take whatever pill will help, do whatever my doctor tells me, sacrifice whatever virgin goat I have to in order to make.this.pain.go.away. 

A few weeks ago, as a bit of a last resort, I agreed to do a saliva test in order to see if we can find some answers.  The results are back.  I met with my doctor and...I'm fine.  There's nothing wrong with me.  There is no medical reason to be in pain for 2 weeks every 60 days.  Ummmm...yay?

So, I cried.  I'm good at that these days.

There is no pill coming.  There is no magical cream.  There is no virgin goat that will help me.

What *might* help is some dietary change.  My doctor is convinced that cutting out caffeine, white flour, and white sugar would eliminate the pain.  (Once again) Ummmm...yay?

Seriously?!?!?  

My first thought was that there is nothing I could eat for breakfast.  That's how brainwashed in flour and sugar my brain has been.  It took my 30 minutes to go "OH, EGGS...and a banana....and orange juice!"  I have been eating yogurt (sugar), cereal (sugar/flour), and/or toast (sugar/sugar/flour) for so long I could not imagine a breakfast without them.

So, I have convinced myself to try it.  For three months.  I figure no one ever says "Man, I should really get more white sugar and white flour in my diet"...

(You can start making bets on how long I last.)

I'm starting now....

I mean...now...

I mean...in the morning...  :)

Well, then fix it, Dear Lizzie, Dear Lizzie...

So, I have recently taken on a new role at my school.  I am excited about it.

In order to do this new job well, I need to listen...to many people... in many meetings...  

For the past year or so, I have been wanting to serve this way.  I have been watching what was happening around me and just itching to get in there and help.  And I am hopeful that I can help.

However, I remembered today that I need to be aware of my limits.  

I am a problem-solver, a fixer, a people-pleaser...  Those traits can be strengths or weaknesses, depending on how well I can find balance.

I can't fix every problem I see.  That is not my job.  

I have learned this lesson from the Universe in other ways.  "Fixing" Anthy was my goal for way too long.  Every other zen momma out there figures out that there is no "fixing" our children - special needs or typically developing.  These shorter humans are who they are - our gift, our lesson, our joy.

Professionally, it will be worth my time to invest energy and thought into this lesson of "how to empower, not fix".  In my new role, I think my biggest challenge will be feeling where those boundaries are found among helping, empowering, and intruding.

It is so easy for me to swoop in and tell everyone what to do.  (It's the best thing about being a math teacher... x = 5, darnit!)  But I don't believe I was put on this earth to do the easy things.  I wasn't elected by my colleagues to remain in my comfort zone.  I was elected to serve.  Serve, I will...

I have faith that I can find that balance and maintain healthy and helpful boundaries.  I might need help though.

My wise, sister-in-law Rose preaches well that it takes a village.  

Turns out I might a need a village soon...  Who's in?  The only requirements are that you're willing to (1) call me out if you sense BS and (2) help me be better at this human being/teacher/leader thing.  If interested, let me know as soon as possible.  The pay is not competitive, BUT there could be cookies in it for you...

For the birds...

Anthony is doing pretty well these days.

He is able to express more of his nervousness (and other feelings) through speech.

For him (and us), this is a huge relief.  It means that there is significantly less screaming, and that Chris and I can have the opportunity and privilege of helping him make sense of situations that make him nervous.

Sometimes it can be taxing though...

About three weeks ago, Chris boiled over a pot while making macaroni and cheese.  From Anthony's perspective, it was pretty traumatic.  It sounded loud when the water boiled over, it looked scary with all the bubbling water running over the stove, and it smelled bad.

Last week was Spring Break, and Anthy has had a bit more anxiety since Tuesday readjusting to the school schedule.

Luckily, he has been able to talk about it...kind of...  

Mainly, he talks about the pot boiling over.  He talks to us about the pot boiling over often...very often.  We (as patiently as we can manage) keep encouraging him to vocalize.



We listen to him.
("Daddy boiled the pot over with macaroni.")

We respond, trying to comfort and give context and predictability.  
("Yes, Daddy boiled the pot over. The pot was too small.  Next time, he will use the big pot.")

We listen again.
("Daddy madeamistake.  He learnedalesson.")


We respond again.    
("Yes, whenever we make a mistake, we learn from it.")

Sometimes he talks to us, and sometimes he opens the cabinet and talks to the pot.
("Daddy boiled you over with macaroni.  You are cool now.  I can touch you ifIwant.")

This morning we had about 20 minutes of the pot/macaroni conversation...then he got quiet.

Anthy: "What's that noise?"
Me: "Those are the birds.  It's spring!  Yay!  Don't they sound great?"
Anthy: "They are loud."
Me: "Do you want to talk to them?"  
(Goal: always talk about what's bothering you, preferably to the one that's doing the bothering.)

So, he walks over to the window and holds on to the windowsill.

"HEY! BIRDS!"

*long pause while he thinks about what he wants to say*

"Don't use the small pot for macaroni..."

As I left the room trying to stifle my laughter, all I could think was that I am SO proud of him...