When

Meetings at school for IEPs, ARCs, behavior, blah are pretty much status quo around here. You get used to it. So going into the transitions meeting for John last week, I was fine-no big deal. Then it hit me, about halfway through-oh no, high school. It was like a tsunami in my gut. He can't go to high school. Its so big there and the kids are big, and they laugh with and at each other, and talk and joke around and go to Physics and they're so big.  And he doesn't do those things, and he never has so how can he go to high school?  But, that's how its been at every school, right? Yes, except Physics. But the other schools have pictures on the walls, and sensory rooms, and lots of colors, and bean bags!  I know, I am completely ridiculous. 

Will he be ok, probably. Will he adjust, hopefully. Will he learn in safe and loving environment, definitely. Will he care about any of the things that are making me crazy, I'm sure not. But I will. And there is nothing I can do.

I just need him to know, I will be here and I love him, my almost high schooler. 

When

When the sun rises in the morning
I’ll be your yawn
When the words don’t come
I’ll be your voice
When the fall creates pain
I’ll be your tears
When the world moves on
I’ll be your right here
When the boys play their games
I’ll be your friend
When you jump
I’ll be your ground
When the anxiousness fills you
I’ll be your break
When the music stops
I’ll be your song
When their eyes divert their gaze
I’ll be your contact
When the street is full
I’ll be your hand
When the moon creates night
I’ll be your pillow
Whenever, wherever, and whatever comes
I’ll be your mom

 

And you?

If I were a real writer, I would certainly consider my absence writer's block. It's not as if nothing has happened. Geez, since last you heard from me we're down 2 IPads  1 mini, 2 IPhones and countless toys that just can't handle "water weight". And the tales were long and funny and not always Johnny in his constant pursuit of destruction (I washed an IPAD mini in a dirty sheets load), but I was thinking that maybe it was too much for me and for others and maybe It was self-serving and maybe it was just attention seeking. And probably it was both of those things, I'm not sure.  And then I started pursuing a passion and that has flourished, but my need to connect and want friends and readers to "get us"  is still a fire inside me, so today I'm back and I'll tackle this post as a sign of hope and optimism in an otherwise dark world.  

And this is a funny one for me because (see above and previous posts) much of what I write is drenched in-maybe wine sweat-probably in sarcasm. So I don't always come across as the eternal optimist, but rather the consummate worrier.  Case in point- last night, waiting for my 11 year-old to take my spot in bed at 4 am, I started to do that thing where every single thing in your life becomes uber important. From forgetting paper towels at Target to the list of questions for the Neurologist you never wrote down to the forever of caring for these kids and how, how, how and who, who, who and the always, how much, much much? 

And didn't I blink and my once 4 year-old in my bed is now 11 year-old in my bed and will probably be my 22 year-old in my bed and the then will Elizabeth want to be in my bed??? And how and when and how long? And will Jake spend time with them, look after them, make sure they are unharmed, safe, loved-will it be too much? 

And my breathing sped and my attractive back sweat kicked in (I sleep in basically a snow suit so that could've contributed) and then I can't stop thinking of how long 

they'll need me and my mom and my dad and thank goodness Adam doesn't drink and eats right so he'll live forever but what if his next wife doesn't love our kids as much and on and on and on. 

But then I'll breathe and calm my brain, sometimes I'll sleep for another hour-many other times I won't.  But of course, I so get it, there are so many other Mothers in is world that have so much more to worry about (hunger, illness, disease, war, exclusion). So I'll scold myself for my selfishness. Then I will do some breathing exercises, get a huge glass of water and vow to be better at this tomorrow. And by better I mean, more accepting, more tolerant, more loving, more positive, more patient, more forgiving, more sober-just a little more. I do know this, I will never stop trying.

Anyway, how have you been ;)? 

Facebook reminded me this was 7 years ago! Wow, and probably the last time they were photographed together!

A Mother's Hope

Recently I was shocked and humbled when my minister asked me to write something for Easter Sunday (imagine!). We talked through some ideas and scripture he was planning on using for the service.  I didn't tell anyone (even Adam) that I wrote something in case it was terrible and he didn't use it (still working on confidence issues).  Anyway, he did use it (thanks Terry :))  I hope the congregation felt what I was feeling when I wrote it.  Feeling thankful on this Easter Sunday.

She lay in deafening silence. Her heart was empty, broken. Her mind raced-the thoughts came without warning. He was bad, wrong, evil. He didn't deserve to be here in the first place, he's wasn't good enough. These were the words of others, but they were infiltrating her brain as if they were her own. She shook her head to rid herself of the doubt. It had been months, but the uncertainty still crept in.

What she knew, what she reached for was what he meant to her. But not just her-what he meant to countless others-those he touched, those he came close to, those he loved without condition, those he healed, those who believed. Her will started to come back and she lifted herself to her knees. It was still too much. The sobs came like a flood and she let them come so she could release the doubt, the fear. She embraced the condemnation of others so she could then send it away, it wasn't hers to keep. She decided right then she would love like he loved, forgive like he forgave, stand like he stood-with the weak, the poor, the broken, the sick. All as one, all as equal. How could she start? How could she heal? She reached deep within her soul or what she felt was left of it and decided bringing people together would be the only way. For the people who loved, doubted, even hated Him to come to eat and drink surrounded by his spirit, brought together by love. Love would be the only way for so many to sit down as one. She hadn't sunk so deep that she had forgotten that love was the only thing that outlives us all, the only thing that really mattered. And so she decided, people would come together for communion to remember and celebrate his sacrifice. His life for each of theirs-his life, his death, and ultimately his resurrection. And in this decision she was able to stand and raise her arms wide open to allow herself to be filled back up again. Filled with all of the things that her son was to her-belief, honor, love, forgiveness.  She would replace grief with determination. Determined he'd be remembered through her eyes. Who she knew him to be. Her heart became full. For once again when she was totally lost, she was able to pick herself back up and open her heart. And she became filled with something she thought she had lost when she lost him. She was filled with hope. 

Don't be sad!!!

I am not kidding. No part of this blog should make you sad-about me or my kids! We are "fine"! Don't you love that word? Fine. Fine means nothing. It is a dumb word. So let's replace it with crazed, stressed, out of our minds -those seem about right.  But even then we really are-fine. Better than fine most days. Worse others-just like everyone else. Where is this coming from-well my mom is super worried that I am not "happy". After every blog she comes over with that worried "mom look". She is afraid that things get too hard,  that things are too overwhelming, that I will run away from home (that would actually be a possibility, but it seems like too much work). And if in reading this, sometimes you are worried too, please don't. It's supposed to be funny and make you, the reader, take a minute to reflect on your own life, it's complications, ups and downs, and know that somebody else is going through something. We all are!  Mine is not better or worse than yours, we all have stuff. So don't be sad! Really, I'm fine 😉!

Take this morning for instance-it's pouring down rain, cold rain that seeps into your skin and makes it impossible to get warm, and of course, it's time to leave for school. Elizabeth is already in the car watching a video-one down. Johnny has coat on ready to go-everything seems eerily fine but because the dog is deathly afraid of the rain, he freaks and bolts passed us, knocking hot coffee out of my hand and all over me, pain shoots through me but I figure since I'm already wet, what's a little rain, maybe it'll take the sting out. To recap, the dog has taken off straight to the car. Now, you are thinking, just let him ride with you, and I have in the past-a lot.  EXCEPT, he barks at literally everything. And it is so loud and ominous that it leaves Elizabeth in a pool of her own tears every single time. So I get the leash to get the dog, grab John's hand to take him out, put John in the car, bring/drag the dog in, take the leash off, breathe, open the door, and simultaneously the dog almost takes me off my feet and runs back to the car where John no longer resides-he is headed for the neighbors-probably to get some peace. Rage building, I run after John, the dog has jumped in the car (of course John didn't shut the door behind him, it's only raining sideways!) Elizabeth sits quietly watching Bruno Mars, I think, "yeah I'm gonna uptown funk somebody up. Don't believe me just watch." 

The dog and I are now wet and disgusting and he is leaving clumps of hair everywhere and now I don't know how I'll get him out (he's large-we both put on the winter 10, only to work the lbs. off in the Spring just in time for the the Sam Adams summer ale to hit the shelves and on again it goes!) So, I get the leash again, get John back in the car, pick up the 80 lb. dog to get him out of the passenger seat (the rage has set in, so I have Hulk strength) and once again pull him inside and almost take my own hand off trying to shut the door behind me. I run burnt and soaked to the car (because I don't want another escape by Johnny and because being late is not an option), only looking up for a second for the cameras. Because surely candid camera was following me this morning and that was some good footage! They will be able to edit out the curse words (and possibly and more importantly the butt shot of me picking up the dog from the car) for primetime TV. They'll have to, I'll be a rich reality star so I'll demand it! 

Not sad!!! 

I want you to think about it and smile, because (hopefully) this blog is for every mom! The mom of multiples who can't imagine getting through another bedtime routine, the mom who just had to go back to work and leave her child at daycare for the first time, the mom whose child was just diagnosed and they are crippled with the whys, hows, and what's next questions, the mom who has had it pretty good so she pays it forward, the moms who will never let go of wanting happiness for their kids no matter how old they are, the dad's who have either done the above or love and support the moms who do! So please don't be sad-celebrate your life, celebrate your kids (exactly how they are), and most importantly, celebrate you! 

BTW-anybody want a dog?

Bitter - 1 Mary - 0

And if I have to hear the Sports Center loop one more time about the younger than I am Peyton Manning being old, someone or something, likely the tv, is going to get hurt

And just when I am going to be mom of the year by making pizza, curly fries and fish sticks for prelunch (because minutes are decades on snow days, so prelunch starts anytime between 9:00-11:30 am) my twelve year-old asks for apples and peanut butter, I hate him and his discipline. And I hate his father who instilled all of those good habits. Where is his father anyway?  Oh, yeah, work. Whatever.

And if that same twelve year-old bounces the basketball on my already warped and failing floors one more time, things are going to get bad-especially for him. 

And when that exact same twelve year-old says he's glad it's a snow day because school is just a bunch of old people talking and you don't learn anything anyway, I shouldn't respond, "well it's a good thing you're going straight to the NBA from high school then," when it's probably the only conversation I've had with him this week and sarcasm is lost on him anyway

And if my 10 year-old son sits on my lap when I am on the toilet one more time to read Curious George-I may cry (check that box) 

And if that same son slams the doors over and over again in frustration from the mere sound of his sister's voice one more time my head might explode

And if that same son crushes one more piece of fruit in my bed or in my hair, I am going to scream
And if that exact same son doesn't get off the bed while I am trying to make it, ha-that was to see if you were still reading, of course I wasn't making the bed.  Silly. 

And if my daughter cries when I leave the room just to tend to the aforementioned slamming and fruit debacle, I might lose my shit (she doesn't really even like me that much, I'm just the only option at the moment)

And if that same daughter pulls everything out of the junk drawers (yes, they are all junk drawers) and chews up paper one more time, I might let her choke on it (oh come on-just kidding!) 

And if that exact same daughter puts one more Lego, binty, small object in my coffee cup one more time, I'll probably do nothing-just make another new cup. 

I swear I am never making it to real  lunch. (Anytime after 11:30 am) 

I did, in fact, make it to "real" lunch.....here's the proof

I don't know why she puts items in open containers,
I think she thinks she is cleaning up :)

And if that moment arrives, as it always does-that I realize that I get to have these moments-because I am alive and capable and healthy. And that I need to embrace these moments. Not because they are fleeting, because in my world they are likely forever. But because I can experience them. It shouldn't be that one of my dearest friend's sister is lying in a  hospital bed fighting for her life to force me to get to the point where I appreciate what I have right now, today. I want to have a grateful heart all the time. (Add that to the long list of to-dos). Deep sigh and breath. 

I need to take a step back, get out of my own head. I need to play when I want to collapse, sing when I want to scream, read when I want to rest, breathe when I want to suffocate, drink when I want to drink (you knew that was coming) and repeat because today I can-and for no other reason than that.

****Please pray for Darcy Patton Nayler, she is my friend Laura Patton's sister.  She needs positive thoughts and prayers!!  She is literally fighting for her life, makes everything else seem ridiculous, doesn't it?

#40

IIt's like a really great wave of relief when 40 finally comes. If you worried, dreaded, or embraced it, it really doesn't matter, it comes regardless. Then comes the deep breath- and for me, it came with excitement for a new chapter.  This is the second half of my life that I am embarking upon (I hope I have at least 40 more good years left :)), and I have to come a few realizations (or really random thoughts).  I hope you don't mind me sharing. They are not original comments by any stretch, but they are from the heart!

Spend time with people who lift you up and support you. Let go of everything else!

It's OK to dream like a little girl. Even as adults, we should never lose that!

Sing Carrie Underwood's "Somethin' in the water", like you used to belt out Bon Jovi's "I'll be there for you." It feels great! 

Hope for the best for other people.

Celebrate life!

 

Be a good friend.

Remember and honor those that built you! 

Allow your children to see your flaws and and help them understand that you are a real person with thoughts, dreams and feelings. 

Empathetic and compassionate are words that I hope people use to describe me. 

(Rather than binge drinker and constant lip stick applier/wearer) 

Although, truth be told, they are probably all true

I've said it once, I'll say it again-a fake Christmas tree can save a marriage.

It is scary I am old enough that I could have given birth to any of the KY Wildcat basketball players. #BBN

Laugh. Every.Single. Day.

Dance

Appreciate family

I may not send Christmas cards ever again-that is not something to have anxiety about in the middle of the night

Do or say something nice to or for someone every single day and it will change you for the better. In other words, resist the urge to be a douchebag.

From Adam Brass, "mix in some water."

Hug-it makes everything better.

When your jeans are too tight, your zipper comes down more easily, be more aware of this than I was last Thursday night. 

Be kind (especially if you are pointing out the above (she was BTW ;))

In the event your Birthday celebration lasts 13 hours-Dixie Chili can save your life!

And lastly, try for a positive attitude. Some days are harder than others, but try anyway!

Example:

(Today Elizabeth's huge new stroller/wheel chair wasn't locked and it rolled in the street and hit a truck, my purse was in it, luckily not her, and spilled everywhere in the street. While I was trying to pick up the contents and pack the stroller up, Elizabeth locked herself in the car and was so distraught when I couldn't  open the door. I had to have my dad drive to my house to get the spare key and she was hysterical by the time he got there. Oh, and I forgot to get the Christmas presents for church because I am a bad church goer, and was late getting presents for needy kids (not something to forget on the to do list). Also, Johnny woke up at 6 this morning, Sunday, and had dismantled and/or destroyed 50% of our eight total Christmas decorations before 7 am (we have no ornaments on the tree :(. He also accidentally bit through my skin because I didn't cut his pizza and get it to his mouth fast enough. We can't get a load of laundry dry because he plays in the dryer and throws the wet clothes on the floor.

Lastly and tragically, I face-timed myself twice while trying to text, but lived through it-barely. 

Hey, another typical Sunday! I still made it through-happy, pretty unscathed, and ready to take on whatever comes next!)

My Heart's Song

So definitely one of the scariest or maybe most worrisome things about raising a child/children (in my case) with special needs is if they really understand what you are trying to communicate to them.  How or are they processing information and how much? What are they thinking about? What if something happens to them or someone hurts them and they can't tell me?  What do they love, what do they hate, what bothers them, what delights them? As a mother, am I frustrated or distracted too much?  What more do they need?  How or where do I start? Who needs what more?  Off the subject but equally as heartwrenching, do they know how much I love them? Do I tell them or show them enough? Certainly you want them to reciprocate that love, but you can't always get what you want! These questions plague my middle of the night thoughts. But then, as with everything in life, there are glimmers of hope that sneak up on me all the time. A few weeks ago Johnny was singing in the back seat with his IPAD and I immediately recognized the songs.  I used to sing the Dixie Chicks song "Lullaby" years ago when the kids were babies/toddlers before they went to bed.  I love all things Dixie Chicks, but especially this song, and it sounds like he was listening!

Ok, so he has to do a couple other Dixie Chicks songs to warm up, and he picks his nose and bangs his head with his fish, and I can't focus on his face because if he sees me videoing he immediately stops singing, and he tries to open the door when the car is moving-oh whatever,  I hope it makes you smile :)

https://www.youtube.com/watch?v=cZE-mkQIewg&feature=youtu.be

"Lullaby" lyrics that he is singing at the end of the video:
They didn't have you where I come from
Never knew the best was yet to come
Life began when I saw your face
And I hear your laugh like a serenade

How long do you want to be loved
Is forever enough, is forever enough
How long do you want to be loved
Is forever enough
Cause I'm never, never giving you up

I slip in bed when you're asleep
To hold you close and feel your breath on me
Tomorrow there'll be so much to do
So tonight I'll drift in a dream with you

Gifted

A mentor

A friend

A companion
A humanitarian

A leader

A listener

A parent

A developer 

A protector

A guide 

An example

An inspiration

An individual

A hand to hold

A shoulder to lean on

A loving heart.......

                                                                                 A Teacher

John and Elizabeth have been going to an enrichment class this week with their special education teacher and an aide in their classroom. You could tell how much the kids love and miss them. These women are amazing! Everything they stand for makes my heart soar. Teachers truly amaze me! 

Mothering him

He cries

I weep

He smiles

I rejoice

He coos

I adore

He runs

I follow

He trips

I fall 

He tries

I cheer

He breaks

I crumble

He laughs

I savor

He sings 

I love

He worries

I ache

He calms

I rest 

He sleeps

I dream

If he speaks, I will listen.

By: Mary Claire Brass

A Dear John letter

Dear John,

Today I broke. I am so sorry. It was one of the long Saturdays when we don't break it up enough, when we expect too much from you, when I get overwhelmed and just want to want a minute. Truth be told, I don't want to play with you all the time. Don't get me wrong, I adore when we squirt each other with the hose, play and splash around in your pool, play trains and tractors, and of course, sing along with you as you belt out everything from Eminem to The Sound of Music.But sometimes on the 765th time of "backpack backpack", I become overwhelmed. I just want Pop to get you and drive you around, I want a break.
Admittedly, when you threw your IPAD in the pool, went to the bathroom on the floor, ate the frozen yogurt with your hands, knocked over the dog's water for the third time, put your open Gatorade bottle that was half full on my bed, pulled all of your sister's clothes out of the drawers, and took everything out of your brother's closet-I got angry. I grabbed your arm too hard, I yelled, I asked you questions you wouldn't or couldn't answer. What I did was lose control. I hate when I do that, when I am weak. I can imagine Mimo would say that weakness is unbecoming, and she'd be right. I fell apart. And the guilt is awful. You deserve better. You don't make eye contact often, but when you do, I sometimes feel you are looking through me, wondering how I don't get it by now. And I can't  help and think of what you'd say to me if you could. Help me, play with me, understand me, know me?  I want you do know I am trying.

 I felt like we had a good first part of the day. We played, took a walk, had your favorite foods, watched your shows, went outside. So I keep asking myself- what happened? I ask that question, knowing I may never have the answer.
I want you to know your curiosity, mischievousness, and "being a boy" are my very favorite things about you. Your perseverance to have whatever it is you want at that exact moment is not your fault, that is my blood running through your veins. I just hope you understand that I am doing the best I can, that I love you with all my heart and that I promise I will do better tomorrow.

This Dear John letter is a bit different, it is a commitment to you my dear Johnny, to your development, to your happiness. It has been and is going to be quite a ride, we both better hold on.......

A little light reading...............

Don't Poke the Bear

There are few things as important to us as our children. Let me rephrase, there is nothing more important to us than our children. But for some reason, unbeknownst to me, in a public school system where supposedly nothing short of excellence will be tolerated, my children are once again the forgotten ones. Not only not important, but seemingly their education given up on. Their development and progress simply does not matter to the school.

There is nothing like an IEP (individual education plan) meeting to catapult a person into this reality.
Let me give you a little taste. The uplifting message from PT and OT in this particular meeting was that, my autistic, basically nonverbal child in the most severally disabled classroom in the district has "plateaued."
"Nothing more they can do to help him."
"They feel like their time is not well spent with him."
"There is nothing that they, as therapists, can do, that can't be done by his teacher and his aides in the classroom." (because the teachers and aides don't do enough,that is sarcasm at its height-in actuality these people are literally sent from heaven and already do everything for the kids, so why don't we just put a little more on their plate?). 

So just to recap in case you missed something and because I don't still fully believe it myself:
Johnny is in the ONLY FMD (functional mental disability) classroom in all the elementary schools in this city.  He is nonverbal, has had an autism diagnosis since he was three, is one of only four children in the most severely disabled classroom in the entire district and he no longer qualifies for PT services, and his OT services were recommended to be reduced.

"His education is not impacted by safety issues."
Are we talking about the child who will walk out in four lanes of traffic without blinking an eye, or the child that will climb a jungle gym and stand at the very edge of an overhang, look right at you and dare you with his eyes to pay attention to something or someone else and if you do, he will step off the ledge, the child who has zero danger awareness or if he does know, he doesn't care, the child that still does not alternate his feet when going down stairs (which is a big milestone in development). The child that does not throw, pass, or kick a ball on command, the child that cannot sit in a given seat for any significant amount of time without intervention, prompts or rewards, the child that will dart through the school-classrooms, cafeterias, or gym without regard to his own or anyone else's safety. The child who has had poor coordination and low muscle tone on every developmental evaluation since he was 10 months old.  

This child is no longer receiving PT services? Actually that is a statement not a question-this child is no longer receiving PT services. He is still receiving OT, don't even get me started on this topic. My rage will go unbridled until my fingers fall off and I am grateful he is still getting this much needed therapy. I just keep thinking how it was mentioned that the therapists do not have the "resources" to help John. If anyone has a child in this school system, that would make your blood boil, it just would not be tolerated. And I find it equally unacceptable to be said regarding my child's education and future. Yes, I understand it is a public school, but tell me what you need to help him and I will get it. Instead, they look at me for what to do, what to try, strategies to use, ideas. I keep comparing it to getting an email from my oldest child's math teacher asking me how to teach him Algebra. I know, wouldn't happen. 

One thing that became blatantly obvious on that day, in that meeting. No one sitting around me at that table could see things from my perspective. Maybe that's not their fault, maybe it's the "system" that is broken. But, I know they look at me like I am so very different than they, like they could never be me. And I get that, I thought I could never be me.  But I found this "throw up our hands" mentality from therapists in our or any school system, embarrassing and offensive.
Imagine as a parent with a child at any level, being told that they had plateaued? Yeah, I thought it was unimaginable too. For those of you that never have to go through an IEP meeting-you are truly a fortunate person. For those of you that do, I feel ya, it sucks and as much as you want to believe that everyone is there for your child, unfortunately, some are not. You and you alone must fight for your kid and their education. Your child is worth it, no matter if the message is subtle or as blatant as the one above.
Luckily, I have taken a couple of weeks to calm down (oh yeah, totally calm now, I deleted my first rant immediately after the meeting). Now, more than anything, I am disappointed and sad. Of course, I plan to continue working cooperatively with the school, but I will not cower and allow my child to slip through, be forgotten, not get the services he is entitled to and desperately needs for his development and gasp, his education.  I will take accountability for my part. I got lazy, complacent, hibernated for a bit because I felt comfortable, like we were in a good place. Unfortunately, my son couldn't tell me otherwise. I am his voice.
There is no place for a sense of security in special education- the bear has been poked. 

I swear I didn't write this! 

Funny Note: People have asked me why I used this title-Adam says this to Jacob about making me mad :).

Note to self

Ah the weekend, so relaxing for some so very not for others.  There is always a lesson found in the weekend chaos....I have noted a few. 

John will stick his hand in the hot oven if he wants pizza badly enough or if he wants it just a little bit. 

Elizabeth's spatial reasoning is an issue. She will be playing "innocently"  on the table (yes, table, geez!) one minute and then the next- well, let's just say her landing  leaves a lot to be desired. (thankfully her behind has a lot of padding  ;/) 

The candle is only relaxing if your son doesn't use it to catch his sweatshirt on fire

Hands are used to catch basketballs, not faces.

When John and the dog are eating Chipotle at the same time, out of the same bowl, I will lose my sh*@%!

Eleven years-old is the sweetest age-said no one ever.

Adam gets sick and I want to hurt everyone around me, including him, I don't care if he feels bad-I want to cut him
Oh whatever, he doesn't do anything anyway, and by "not do anything" I mean he does everything-help!

I don't know how many times I have to say it, water and electronics do not mix.

Screwdrivers and hammers are not toys, and Johnny doesn't treat them as such. My poor walls and floor.

I bet the former Presidents we are celebrating today didn't have to stay home with their kids to honor the British monarchy.  (oh boy, I'm sliding)

Watching Elizabeth try and do the hand motions for the Itsy Bitsy spider makes me forget she spilled my coffee twice before 8 am and all of the sudden everything is right with the world-thank goodness for tomorrow!

Disclaimer: no children were harmed in aforementioned incidents-just some really close calls! Happy President's Day! 

Keeping Score

You know why keeping score is never good, especially with a spouse? Well obviously because, someone has to lose. I know you were thinking other obvious reasons not to keep score like um, it is not healthy for a marriage, it could cause resentment, it pits you against each other, etc. blah, etc.  But really, it just sucks be on the losing end.  OK seriously, I do feel the "I did this so you need to do that" isn't really the best way to come into or go out of a weekend, but do you feel like sometimes you just can't help it?  Do you ever feel like you are the one doing the puzzles, wiping butts, switching laundry, putting the dishes in the dishwasher, cleaning up toys- you get the point. But now, coming out of the haze of a whole lot of family time over the weekend, I realize the reality of the situation- I totally lost again.  You see, I had been looking so forward to the Golden Globes, not just the Globes however, the sixteen (no, not sixteen, 6. Yes, 6) hours of pre-Globes with the dresses, the interviews, the Bradley, and of course, the Queens of the Universe who in my mind are my close, personal friends, Amy and Tina. Judge if you must, but I am here to tell you, it is not a good look on you. Anyway, it is hard to do the aforementioned kids stuff when you want to be committed to E News and NBC for much of the day. I am not sure who I thought was doing all the work around here when I clearly wasn't, but still had my "poor pitiful me" attitude going into the evening.  I don't even want to list what Adam accomplished during the day because it will surely make you feel even worse for him being married to me than you already do. The moral of the story-if you know you are going to lose-stop keeping score!  Just kidding, the moral should be appreciation for what you have accomplished during a given day rather than what you haven't, appreciation for what your husband or significant other does-what other moms and dads are doing that are much harder and more taxing, and gratitude for the day in general.  It's a lofty attitude adjustment, I know, but it's better than losing!  And occasionally you'll get a moment like this in the picture, so very rare with Johnny...............and you realize no matter what-you've actually won.

Telltale signs it is time for the kids to go back to school

Christmas decorations still up, except those that have been broken-wish I cared

Pajamas all day long-not a care

Pizza for breakfast lunch and possibly dinner-should care

Capri Suns strung about the house, sticky floors everywhere- don't care

Presents that have already been destroyed-tried to care

Hair that should have been highlighted weeks ago-kind-of care

Haven't worked out in months-wanna care

Bags under my eyes so big-borderline offensive-don't have the energy to care

School has been canceled again for tomorrow-totally care

Potato Chips for Breakfast

I think about how I act when I need to eat and the nasty human being I become, so I think my kids come by it honestly when they act like little brats when they are hungry. Sorry, that was a little harsh, but I am starving. See what happens! Anyway, when there is even a hint that someone is crabby, I immediately think to myself-feed them. Even as infants when they would fuss I would automatically stick a bottle in their mouth. So it is really important to me that they are fed before school. I know, Mom of the Year. Wait, don't cast your vote yet, you haven't asked the front-running candidate what she feeds them. Well, I think I have become a little too lax on this. This morning-Chipotle, other times-leftover Mexican, on an organized morning a few years ago-a breakfast casserole, and more often than I'd like to admit-potato chips. What? Yes, potato chips. He refuses to eat cereal, scoffs at sweet things like doughnuts (I wouldn't lay claim to him for this-but it has been determined-he's mine), eggs-nope, toast-picks at it, but mostly leaves it scattered in crumbs on the floor, pancakes-not a fan, fruit-apparently only when he's in the mood. Seriously, what's a girl to do? I will tell you what this girl does-gives the kids some damn chips. I have done it and on more than one occasion. What can I say, he's a carb kid. He has to eat and I have to continue to live in this house without jumping off the roof head first, so potato chips it is!

Let the judgment begin or report me to the authorities, just don't write Dr. Oz on my behalf, he totally freaks me out.

Kind

From one child to another

I'm the kid you pass in the hall, say hello to, maybe share a moment in class,
I act differently than you and sometimes do not do as I am asked.
I spin, or twirl or flap my arms seemingly without care,
but there are times and experiences that with you I'd like to share.
I love clapping, singing, and laughing, and a stranger I've not met-
like you I am made in God's imagine, without shame, guilt or regret.
I know sometimes it is easier to laugh with friends even during my distress,
and wonder if you'll ask yourself why you mock the one whose words can't be expressed​?
Yet I promise I don't blame you, my own brother struggles from time to time too,
to be the one who has to stand up, instead of being cruel.
Parents too can be confusing and on their children many old prejudices land,
it is true of them as well, they are frightened by what they don't understand.
I hope in time you look into your heart because I know like mine it shines,
and then your mind will ask of you-will I be the one others call kind?

Mary Claire, Johnny's Mom

Johnny's Favs

"Autists are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It's that you're destroying the peg."

Paul Collins

Wonderful Quotes from Johnny's favorite author:

Dr. Seuss

"Fun is good."

"Don't cry because it's over, smile because it happened."

"Sometimes the questions are complicated and the answers are simple."

"Today was good. Today was fun. Tomorrow is another one."

"It's not about what it is, it's about what it can become."

"I'm afraid that sometimes you'll play lonely games too. Games you can't win 'cause you'll play against you."

"When he worked, he really worked.  But when he played, he really PLAYED."

"You're never too old, too wacky, too wild, to pick up a book and read to a child."

Helen Keller

"I seldom think about my limitations, and they never make me sad. Perhaps there is just a touch of yearning at times; but it is vague, like a breeze among flowers. "

"Toleration is the greatest gift of the mind; it requires the same effort of the brain that it takes to balance oneself on a bicycle."

"What I am looking for is not out there, it is in me.

"Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence."

"Self-pity is our worst enemy, and if we yield to it, we can never do anything wise in this world."

Cincinnati Reds Field Trip Extravaganza

I hope writing about this field trip is the closest to a PTSD episode I ever have. It was just a typical Spring day, breezy, sunny, a bit of a chill in the air; 2nd graders running about-baseball was in the air. It was a great day for a field trip to the Cincinnati Red's stadium. There would be tours, speakers, play time. This field trip was going to be great! The previous statement may have oozed sarcasm-in actuality it was a great day. Johnny, of course, would not be subjected to sitting and listening to history lessons and the like so Kathy (a fantastic aide in his classroom), Johnny, and myself strolled the grounds (mostly he was being pushed in stroller-that kid totally has my number), played in the museum area that was appropriate for kids, and ate our packed lunch in the actual place designated for lunch! Unfortunately, there were things I didn't consider (yes even after all these years, there were things I didn't consider). First, the field trip was all day, previous ones had only been a couple of hours. So I didn't think about changing a nine year-old in the public restroom and also that same nine year-old's affinity for bolting in a nanosecond. So the bathroom thing was no big deal, easy breezy, but if there was one instruction, one thing we heard throughout the entire day it was- “when we go around the baseball diamond, under no circumstances can anyone step foot on the field.” All the kids and adults nodded in agreement, over and over we were told and we understood (most of us, that is!). The instructions were clear- we would walk around the baseball diamond and not step on it. If I heard it once, I heard it a thousand times that day. Turns out my Johnny-not much of a rule follower.

The tour of the field and dugout were highly anticipated by the kids and began uneventfully. We were walking along with the class, close to the rope which was the “barrier” between us and the field, and the environment was controlled. Ha, ha, ha, ha, ha HA! Remember that nanosecond? IPAD dropped, attention diverted, Johnny sprinted to the middle of the Red's field toward a moving John Deere riding mower. Well, let's just say, the Red's staff did not find this as amusing as the fellow parent chaperones. The man on the mower screamed over and over at us, at him, to stop. As if? Oh my gosh, by the time I caught up with him he was rounding first headed for a double (not really, he has no idea where the bases are I just wanted to give you a visual of how far he got before I could catch up with him). My heart was absolutely pounding out of my chest. What's interesting is that he wasn't being bad, he could care less about a silly baseball field. He loves riding mowers! I should have anticipated it, should have seen it coming. I guess maybe I wanted to blend in that day, just a mom and her kid on a field trip (so ridiculous, I know). But Johnny always has other plans...........

As one dad put it, “Not many kids will ever get an opportunity to step on a professional baseball field,” and that is true and a good way of looking at it. He just saw and opportunity and seized it! Looking back, I still shake my head and smile cringe thinking about that day.

Yes, he perfectly capable of walking. 

But if you could ride, wouldn't you?

Playing in the museum before the great escape!

Happy Halloween!

Oh my gosh! Elizabeth and Johnny's teacher sent me a picture of them on Halloween at school. They are in the SAME picture. Over the past few years, this has become virtually impossible, unless there is an adult using force. Seriously. So, needless to say I was so excited when I got this picture. Below is what I believe they are thinking when this pic was taken.

Johnny's thoughts:

Seriously dude, get her away from me.

Is someone calling me from over there?

Have I not expressed my dislike for her enough? Now a picture with her-unbelievable.

I will never hold her hand, not under any circumstances.

Hmmmmmmmmm (or whatever a humming sound is)

Are we good here?  I am so over this costume.

                                       This is so not fun!

Elizabeth's thoughts:

Cheese!

I love dressing up and I love my brother!

Come on Johnny, let's hold hands.

Could I be any cuter?

This is so fun!

Yep-nothing

That awkward moment when you realize that your life is absolutely positively nothing like the people with whom you associate. It happens often to me, because our life is so very different than anyone with "typical" kids. This first realization, though, really sticks out. For me, it was when I was hanging out with a group of friends, which I love to do so very much, and the kids were little and my friends were chatting out what they were worried about at the time. Granted, these were and are important and significant things, things I worried about with my "typical" child, but it was still so striking to me. I was and continue thinking if I ever will hear the words "I love you", will my child ever be invited to a friend's to play or worse will he know/care he was never invited, will he ever go to the bathroom on his own, will he ever sleep in his own bed or through the night, will he ever be able to play/work/live somewhat independently? These are my everyday worries, every hour, every minute questions. It is that until you have that first time, where it is so apparent that your life, and more importantly, your children's lives, are going to be so very different than most of the people that you are surrounded by everyday. Sometimes that is a very lonely feeling, even if you have the very best of friends.