Sunday, August 29, 2010

Five Minutes and 1-2-3

Or another possible title for this post:  Transitions and Discipline

Did you ever get the "5 minute warning" from your mom?  How about the dreaded "I'm gonna count to 3...  1....2....3"?  These are classic mom-tools to speed things along and get kids prepared for the 'next thing' (as in the 5 minute warning) or give the kids an opportunity to make a different choice (as in 1-2-3).  Most moms start to use these tools in the toddler years, as they work on discipline, compliance, and smooth transitions. 

Smooth transitions?  Discipline?  Compliance?????  What are those?

And then, without knowing why, suddenly J-man is getting it.  Don't ask me how.  For some unknown reason, I started trying the 5-minute warning with him. 

"J-man, we are going to speech in 5 minutes"

"Bath time in 5 minutes"

His response:  Nothing.  No acknowledgement of what I have said.  And yet, when 5 minutes arrives, he seems more willing to do what I have requested.  So somewhere in that noggin he is processing what I have said.  Hmmm...

Then I thought "Why not try the mom-tool 1-2-3?"

So J-man stands on the table....  1-2-3....   And he whines, cries, but often gets down.  (Of course, he IS standing on the table... *sigh*)

In fact, he even will sass me back a little, completing my 1... 2...  with his own eeee (three).

Is this progress?  I think so... inchworm-like progress. 

Friday, August 27, 2010

When Mommy Gets Choked Up

We are starting to work on improving J-man's interaction skills. 

As pretty much every parent in our position probably does, I am reading books.  Lots of books about building interaction, language delays, etc.  The current manual:  Play to Talk by James MacDonald and Pam Stoika.  I am only 60 pages in, but so far I can give it two big thumbs UP.  Without spending large amounts of time explaining the program, let me just say that right now the current take-home message I am getting is that I need to chill out and simplify simplify simplify. 

So that is what I did today.  Chilled out and simplified.

And we have had a brilliant day! I wish I could tell you all the ins and outs, but I can't articulate it.   Now, don't get me wrong:  J-man was as much of a butt head than he always is.  But he was more present.  I was more present.  The overall tone of interaction improved.  There was MORE.

For example, J-man was in the tub this evening, chattering away to himself in his Martian talk while I putzed around getting his jammies ready. I walked up the stairs and stopped a couple of steps away from the top, perched my face on the top stair and was watching him in the tub. No words, no mom-in-his-face, just simply present.  Then J-man looked up, caught me watching him, and calmly said " Hi Momma".

Allow me to repeat that.  He said "Hi Momma".

I was stunned. I said " Hi Jonathan".

He repeated "Hi Momma".

And he went back to playing.  Let me tell you, I can honestly say I have never heard him greet me like that. Genuine, real, not prompted. I can't help but get choked up about it.

Yep, two thumbs up Dr. MacDonald.

Two BIG Thumbs Up.

Thursday, August 26, 2010

Videos A-Go-Go

Just for fun, some little videos of J-man. 

Here he is, playing mini golf with his cousin. 
As you can see, he plays golf like I play golf.

This is pretty typical play behavior for him.  Not inappropriate, but not exactly engaged.  The paper has a large track drawn on it, along with 'parking spaces' in the center.  I did end up getting a little back and forth play, but only after I put down the camera.  I need a tripod.

And lastly, just cause it is fricken funny.  Hey Grandma, check him out!!  Aren't you proud!?

Tuesday, August 24, 2010

An Open Letter to All Professionals.

My Heart left my chest
In tiny jeans and t-shirt
Walks around, exposed.


New teacher, or therapist, or doctor? Is that you?

Oh hello…

I just wanted to chat with you a second. To caution you. Or warn you.

Please, tread carefully.

You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well… you see that heart?

The slightly broken, definitely bruised one?

Yeah, that’s my heart.

My slightly-broken, definitely-bruised heart.

Now, I realize that as you look at me you might see…a confident parent… or an angry parent…or a happy-go-lucky parent…

You might think that I understand everything… or nothing…… or that I have all the experience in the world because I have done this before… or that I know the rules… or that I don’t know the rules and that is for the best….

You might believe… that I am high maintenance… or overreacting… or maybe neurotic… or disengaged and uninterested… or that I don’t really care… or maybe I care too much…

But regardless of what you see, what you think, or what you believe, this is what you should know:

I am broken-hearted. And it doesn’t matter if it is the first day or a century later. It doesn’t matter where in the “grief cycle” I might be. It doesn’t matter if the wounds are healed, or healing, or fresh and new. This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don’t speak, in judgment or not, my heart is out there.

Some of “us” parents… the ‘special’ ones… can be a pain in the ass. I know that. WE know that. But we are fighting a fight we never planned to fight, and it doesn’t end. We don’t get to clock out at the end of the day. We don’t get a vacation from it. We live it, everyday. We are fighting without knowing how to fight it, and we depend so much on you to help us. We have been disappointed, by you or others like you.  And we are disappointed in ourselves.  We are your harshest critics.  We are our own harshest critics too. We are genuinely fearful, and driven, and absolutely devoted. And we also know, we need you. So please, be careful with us. Because as hard and tough as we may look outwardly, our hearts are fragile things.

Thursday, August 19, 2010

GEMM Loves IEP Season.

My current mantra

Did I think that we would dodge the craziness that is IEP Season?

Did I think that... somehow... because we had conversations and decisions made in the Spring, that we would dodge the chaos that is Fall Special Ed?

Oh, silly rabbit.... 

About three weeks ago I received a letter letting me know that Jonathan would be attending preschool at our local school.  This was a surprising letter since we had decided to keep him at Jack and Jill for this next year, and receive services there.  I called the school district office and let them know that some kind of error had been made. 

And a Call came today...

Oh, well, their impression was that the case manager felt that J-man needed more service than they can give at his daycare and therefore he was signed up for their program.  We would need to have a meeting to clarify things.  At the start of the school year.  In two weeks.

And what I find most frustrating... most insulting... is that the woman I spoke with doubted what I was telling her.  That I was WRONG.  That I misunderstood the case manager's plans.  That I didn't know what I am talking about. And oh, by the way, that I didn't get to decide...

Green Eyed Monster Momma's time has come again.  Let's get it on!

Monday, August 16, 2010

Less Traveled Roads: A Repost

As we head into fall, I am struck yet again at how this journey is so different from other parents' journeys.  I have been watching all kinds of "news" reports about getting Back to School and all the concerns parents and kids may have, and I think to myself "PLEASE....  you should read some of the blogs I do!".  Because let's face it, the coming school year brings a whole host of new challenges (and anxieties) for special needs parents and their children. 

And we are right there with you.  New "diagnosis", new teacher, new therapists, new worries, hopefully new goals... this time last year I felt way better than I do this year.  I guess my feet are little stuck in the mud. 

In honor of the coming IEP Season (thanks again to Vicki for that phrase), I am reposting this piece I wrote last year. Forward to any friends, teachers, and family that may not understand!  (My little sarcastic updates are in yellow)

Less Traveled Roads

I shall be telling this with a sigh

Somewhere ages and ages hence:
Two roads diverged in a wood, and I--
I took the one less traveled by,
And that has made all the difference

--Robert Frost

There is this famous essay by Emily Perl Kingsley called Welcome to Holland. In this essay, she compares the difference between parenting a 'typical' child and a 'special needs' child to planning a trip to Italy, but ending up in Holland. While it is an interesting analogy, it sounds too easy. No offense, but Holland and Italy both sound pretty swell to me.

For me, I tend to think of it a little differently. I look at parenting like taking a walk in the woods. Now, most parents hike the well worn trail. It is wide and well traveled, with many other parents hiking right along side you. You see similar overlooks and panoramas, beautiful vistas and mountain creeks. There are definitely hills to climb, bugs to avoid, and the occasional rain storm. And sometimes you are the unfortunate one to step in the doggie-doo or trip on a big rock. But you have the benefit of others who travel with you on this same path, and most share the same experience.

For the parent of a special needs child, parenting is different. There is only a very thin trail, or maybe no path at all. Grass and tall weeds cover the forest floor, and there are unexpected mud pits that suck your shoes in. There is wildlife galore; some of it beautiful and some of it scary and dangerous. Gnatty, swarmy bugs bite. You aren't very sure where you are going or what direction to take, and the few guidebooks or fellow travelers you meet all have a different opinion or direction in mind. Mostly you hike alone, but occasionally meet others who hike these woods too. They know your hike because they are doing it as well. They can share tips and tricks to making it though the woods. But always you must hike on your own, because no one's journey is the same. Eventually you learn to navigate this woods. Slowly but surely you learn to avoid the mud pits, to defend against the scary critters, and to cut though the tall grasses in order to make the journey go more smoothly. And you hope that you are going in the right direction and that you aren't going to run into a bear or a mountain lion. You hope for the beautiful vistas, but you are never quite sure where you might end up.

Last week I attended a class on the Individuals with Disabilities Education Act (IDEA). According to Wikipedia, IDEA is a United States federal law that governs how states and public agencies provide early intervention, special education, and related services to children with disabilities. Essentially, IDEA is the rules of the game that States have live by when providing special education services. This course was put on by a parent advocacy group (PACER), and was organized in such a way as to explain to parents the essential "what you need to know" rules. It covered topics such as the evaluation process, getting services, evaluating those services, and how to troubleshoot the issues and conflicts that could come up.

I wanted to take the class because as we approach the J-man aging out of the Birth to Three programs and entering the next phase, we will be starting to revise both the types of services he gets and creating an Individualized Education Plan (IEP) for him. I figured it might be pretty important for me to not only know the rules of the game, but also how to navigate the system. Avoid the mud pits, tall grass, and toothy critters as much as possible.

What struck me was how lost and frustrated so many of the other parents were. One mom, upon learning that she should have been receiving quarterly reports from her son's teachers and that he was grossly overdue for a re-evaluation (by 1 year, no less), burst into tears. Angry pissed-off tears! Another mom's voice cracked and her eyes welled up with tears when she explained that her son would never progress beyond a 4 year old level, and she wondered how she could ever make a meaningful IEPs for him. And yet another mom explained her frustration in finding an appropriate school district for her child in a recent move (been there, done THAT).

We have been so fortunate. Jonathan has a brilliant team (umm, ya, that is changing??... ) and we have had very few struggles thus far ( That's changing too.... sigh ..  ) While I worry on a daily basis about where we are going and what we are doing right or wrong, Jonathan could care less. He is happy. And I think... no, I know... that the reason we have had it nice so far is that I am always willing to ask the questions. To be his advocate. And I have enough knowledge and skill that I can do it right. It doesn't mean I am not filled with doubt everyday, but I know we can make it.

My heart breaks for other parents on this journey who are struggling. There is no real guidebook for these woods, and feeling lost, scared, and confused can become a regular event. When people try to live from a place of stress and fear, things always go terribly wrong. And yet, this is where a lot of these families are ....trying to negotiate the forest without a map, a clear trail, and a solid endpoint.

Some Brownies with Your Veggies?

It's a three-peat!

The monkey looks happy

Here are the Sneaky Chef Brownies.  After multiple taste-tests by several people, here is the consensus: 

Not bad, not bad at all.  Good even.  Not outstanding, but good.

Most of the taste-testers agreed that the brownies were a little more on the cake-y order.  But they were moist, chocolaty, and no hint that anything good was inside them.  Like the 3/4 cup of Purple Puree!

I did run into a little problem. Now, I used her "Quick Fix for Box Brownies" recipe.  The recipe on the box and the recipe in the book did not exactly match the egg-oil-water mix.  As anyone who bakes knows, you gotta be careful monkeying around with ratios of wet to dry ingredients.  All kinds of chemistry going on there.  I tweaked as best I could, but the cake-y-ness might have been a result of that.  I will have to try another brand, perhaps? 

Plus, add chocolate chips.  There can never be enough chocolate chips..

Friday, August 13, 2010

How Headbutts Can Be Good (?)

J-man has started a very bad habit.


Allow me to say that J-man has never, ever been an aggressive kid.  Even if he steals another kid's toy, it is always in the spirit of "Oh, you were holding this?  I didn't notice..."  So the advent of this new and troubling behavior has me a little concerned.  To be honest, J-man's headbutts actually aren't in the aggressive spirit either.  Usually, he is really excited.  He might kiss you one second, and you think he is coming in for another kiss and then.....


And that is what happened to me today.  BANG!  Right on the forehead... and  I saw stars.

The few times this has happened before, I have been able to prevent the collision, tell him no, watch him try and do it again, and wonder about where did this behavior come from (I think TV, but maybe daycare?  Not a lot of headbutting on Sesame Street...).  He typically giggles and laughs when he does this, and seems mystified on why headbutting wouldn't be a good thing. 

This time, he hit hard and I saw stars.  He seemed unphased, but my eyes teared up and ....instead of yelling or correcting or walking away.... I cried.  Big tears, boo-hooing, the whole nine yards. (Actually, I couldn't help it... dang, that hurt!). I covered my eyes as the tears welled up, and J-man moved my hand and looked at my face with this really perplexed look.  I told him that it hurt and mommy was very sad.  His eyes welled up and he put his arms around me for a long, comforting hug.  He patted my back. He sniffed when I sniffed.  He seemed sorry.

So maybe the goose-egg on my forehead has taught J-man a little bit about empathy?

Thursday, August 12, 2010

The Sneaky Chef Strikes!!!

So begins my journey into becoming a Sneaky Chef....

When I last left you, I was starting off by making an Orange Puree.  The Orange Puree, by the way, is essentially sweet potatoes and carrots pureed to a very smooth consistency.  Well, this week I made two more purees, the White Puree (cauliflower and zucchini) and the Purple Puree (blueberries and spinach ... yes, it's true). 

Purees in serving size baggies
So, here is my first attempt in making these purees into food that someone might actually eat:  Baked Macaroni and Cheese with the White Puree.

Delicious!!  No really, even my hubby (who is a veggie hater) loved it.  You really could not detect veggies at all.  Of course, J-man hates Mac and Cheese (I know, I know... I don't understand it either), but I thought I would start with something I love.

My second attempt was this evening.  I made spaghetti with sauce, and added the Orange Puree to the sauce.  J-man loved it!

As you can see, he starts using a fork...

...but quickly abandons it.  Per usual, actually.
We aren't "big" on table manners.
Go figure.

Next to come:  Brownies with the Purple Puree. (Wrap your head around THAT one.) Stay tuned...

Wednesday, August 11, 2010

Celebrity Lullabies with Ricky Gervais

J-man has a renewed passion for Sesame Street.

And I have a new passion to get him to interact with me.

Enter Ricky Gervais singing "The N Song".

He LOVES it. And to be honest... me too.  I mean, come on!!! 

I will sing the chorus... yes, that chorus... as we both shake our heads.  Our primative head-banging.  J-man will grab my face and go nose to nose with me, wiggling his head and saying "na-na-na-na-na-na... goes".  He grins at me.  He giggles with me.  He squeals. 

Thank you Sesame Street.

Tuesday, August 10, 2010

An Open Letter to Anyone Who Might Visit My Home

Dear YOU,

Yes, you!  Be you family, friend, or complete stranger.  Be you my mom, my mother-in-law, a friend from work, neighbor, friend of a friend of my hubby, school district representative, pizza delivery person (we love you), Mormon doorknocker, or UPS guy. Whoever you are, whatever you do, consider this my public notice...

I give up. I cannot... for the very life of me... keep a clean house.  I just can't. 

I have tried, but it is not in my nature.  I have been messy since I was in diapers (my mother would no doubt testify to that).  I reformed pretty well once I became an adult, managing to do a halfway decent job.  It was never perfect, but it was passable.  The main germ areas (kitchen and bathrooms) were pretty decent.  After hubby and I got together, the challenge increased.  You see, my hubby is a slob (Sorry hunny, but it is true).  And we moved from an apartment (smaller space) to a house (bigger space).  Then we had J-man.

And as you know, he takes some time.  My time.

And so now, even when I DO have the time to clean my house, I just don't want to.  I just don't.

So I am giving up.  When I have downtime, I am going to now spend it doing only essential chores (laundry, dishes).  I will write on my blog.  I will consider starting an exercise program that I need desperately.  I will cook, which I love to do.  

So when you come to my house, expect the following:

*  There will be toys on the floor.
*  There will be crumbs on the counter.  And the floor.  And probably on the furniture.  Same with dust.
*  There will probably be dishes in the sink, and maybe on the counter.
*  There will be laundry in baskets, probably clean and folded.  But there.
*  The bathroom may or may not be clean.  It is a roll of the dice.  Pee before you arrive if that bugs you.
*  My hubby's Mancave is his responsibility, and probably a pit stain.  Deal with it.

Now, I am always up for help, so consider any and all offers for housecleaning assistance on the table.  I will take you up on them.  I am no longer proud. 

Consider yourself warned.

Monday, August 9, 2010


J-man is developing something of a fearless streak in him.

Check him out checking out the minnows.

He bravely... almost stoically...  held a bigger fish at the cabin.  He looked it right in the eye. He was most serious. And then set it free.  He picked up a toad.  It jumped up his shirt and he calmly, seriously, and with the eye of a scholar, picked it off, looked at it for the longest time, and then set it back down to hop away.  Same story with an inchworm.  (Note:  they all lived!!  PETA will be so relieved...)

He was afraid of the water at the beach at the beginning of summer.  Now, he heads full force in, and would keep walking in deeper and deeper if his helicopter mom would let him (I won't... he can't swim).

He is climbing up the jungle gym rope ladder with no assistance.  Have I mentioned that he has a serious clumsy streak, can't jump or walk down the stairs unassisted?  Can you say motor planning problems?  And yet, up he goes... giving his helicopter parents a heart attack as we hover below to try and prevent the inevitable head injury or broken bone, should he fall...

The confidence and curiousity is wonderful.

The complete lack of any appreciation of danger... a little nervewracking.

Friday, August 6, 2010

Lemons and other lessons

The lemon may be the most deceptive of fruits.

If you were transported from another world and offered a lemon, what would you see? Oval in shape, a glowing, downright cheerful shade of yellow, the lemon appears to exude happiness and good feelings. You take a sniff and breathe in its fresh, tangy-sweet aroma. Imagine then, anticipating joy and good feelings, you might take a large bite of that juicy lemon….

And then…ah then… you might have a different experience altogether. An apple?? PLEASE! The fruit eaten by Adam and Eve was no doubt a lemon. The lemon seems so filled with promise, and yet is so unexpectedly sour. Did you feel your mouth muscles tighten at the idea of biting into that lemon? Did the saliva start to flow? The lemon inspires a Pavlovian response in people, and with good reason.

And yet…

And yet, lemons are so much more. For all of their saliva-increasing, pucker-inducing traits, lemons contain so many important and wonderful qualities. Lemons are a natural antiseptic. Lemon water is provides all kinds of disease prevention qualities, from preventing the flu to cleansing the liver. Lemons are an excellent source of Vitamin C, potassium, and help with calcium absorption. Lemons provide excellent antioxidant and anti-cancer properties. And lemons, when added to any number of recipes, greatly enhance the flavor of foods from bland and boring to fresh and interesting.

Lemons feel fresh, like spring.

Maybe J-man is like a lemon. This thing… whatever it is that plagues my heart… has its sour pieces. And right now my eyes are watering with its sting. But I read blogs and hear these stories about how it is going to be OK. That kiddos like J-man are amazing children who have so much to that is special to offer the world. Someday (hopefully soon) it will be easy for me to see his gifts.

Tuesday, August 3, 2010

The Sneaky Chef Dons Her Hat

As seen in a Nashville Bookstore
I should have bought it!

I ate two brats for lunch today.

Cheesy brats with the most delicious (white) buns.  And chips, don't forget the chips.  And nary a veggie in sight.  You can probably guess my mood...

But this afternoon, I embark on the beginning of my quest to become a Sneaky Chef.  It will involve a lot of steaming, chopping, and pureeing.  It will, no doubt, be quite an experiment in hilarity.  I shall begin with the Orange Puree, and then try the Green Puree.  You are jealous, I know. 


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