Our journey in the Autism Spectrum

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Versatile Blogger Award: Who? ME?!?!

*blushing*
Versatile Blogger Award
Many thanks to aka Super Mommy for nominating me for this prestigious award! (Hey, it is prestigious! Alright? Yeah, that’s right!) And now it is my turn to nominate other bloggers that inspire me to be a better blogger, a better mom and a better friend! Thanks for letting me feel like a part of your lives! I feel so less alone because of all of you!!! ❤
Also, for the record, aka Super Mommy named A LOT of those already that I would also have listed here so if you are not on my list but were nominated by her, please know that I feel the same way about you too!
So, without further ado (in no particular order!) here are some of my favorites:
7 Things You May Not Know About Me:
1) I read very fast.
2) I was a Greek in college. (ZTA)
3) I love things in miniature.
4) I avoid feeding my kids peanut butter when they are sick because I cannot stand the smell when they throw it back up.
5) I always have a fear of my house smelling bad. (not because of #4, but all odors!)
6) As a kid I was a competitive swimmer.
7) I’ve wanted a tattoo since I was 16 yrs old. (still haven’t gotten one but I think I might be getting closer…)
The Versatile Blogger Award is for bringing bloggers together and sharing quality blogs with our readers and passing the award on to one another.
If you are nominated, please:
 Nominate (15) fellow bloggers for The Versatile Blogger Award.
  1. In the same post, add The Versatile Blogger Award.
  2. In the same post, thank the blogger that nominated you in a post with a link back to their blog.
  3. In the same post, share 7 completely different random pieces of information about yourself.
  4. Inform each nominated blogger of their nomination by posting a comment on each of their blogs.

~ Thanks again, Cassie and all of my blogger friends! You have no idea how much better you all make me feel! ❤ 

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Breathing Optional

I want to breathe. Really. I do. A few autism moms have banded together to  name 2012 as The Year of the Oxygen Mask. They even have a Facebook page, The Oxygen Mask Project, so you KNOW that it’s official!  It’s a year to take time and remember to BREATHE. It’s a year that Moms need to learn and remember take care of themselves. To renew. To refresh and rejuvenate. (Now if only those body wash commercials would hold true,we’d be half-way there! Easy-peezy!)

However, for me, I don’t think an oxygen mask is going to cut it. A ventilator might be more appropriate. (Please no backlash on this analogy.) But really, a lot of days it’s not that I don’t want to breathe…I am just too exhausted to want to do it myself. At this point, remembering to breathe is just ONE. MORE. THING. to add to my To-Do list that ain’t gonna get anywhere near being scratched off anyway. Know what I’m sayin’?

Now, please don’t misunderstand me. I think these “Oxygen Mask Moms” truly ROCK! I practically stalk follow their blogs and their Facebook pages. (See my list of my favorite autism blogs on the right hand side of this page).  Their stories move me and speak to my soul. They are  downright inspiring! I am in awe of their talent, their endless energy and their general “autism-mom spectacular-ness” to say the least! I believe in what they are saying and know how important it is for us moms, especially those of us with special needs kiddos, to take care of ourselves. I also know that a lot of us just don’t. Me included.

[Ed. NOTE: This is the space where I deleted FIVE  paragraphs of whining, complaining and a big dose of self-pity because really, deep down I KNOW what I should be doing and I do know and appreciate just how damn good I’ve got it! ~You’re welcome.]

My kids and my husband are my heart and soul.  My family and close friends are amazingly supportive! My husband is, well…let’s just say most days he approaches “saint” status. Srsly. I could NOT ask for more or better when it comes to support! Yet, why do I feel so suffocated and lost and floundering most days?  How do I find the strength and energy TO BREATHE so maybe I have a chance to find ME ?

I don’t know. But do I know I have to try.

This past fall, two of my friends, Donna and Kara, and I had been kicking around the idea of a “girls weekend”. To go somewhere to hang out and relax and just “be”. Despite issues with coordinating schedules, personal finances (or lack there of) and timing, we held on to the idea hoping “someday” we would work it out and it would happen.

My husband, being the man-of-action that he is (thank you ADHD), got tired of hearing me “talk the talk” and forced me to “walk”. He offered a staycation. He and the kids would go up to his parents for a weekend so I could have the house entirely to myself to do whatever I wanted. (See? “Saint” status.)

Hmmmm….would this work?  I was a bit surprised that my girlfriends were as enthusiastic as they were. I mean, my house is very small and certainly NOT fancy, or spa-like, or any place I would ever think of as a retreat. But thankfully they bought into the idea right away. During the holidays it was Kara who practically forced me to open my calendar and set a date in Sharpie. (Okay, not really but close.)

So, the date was set.  As I thought about what I really wanted to get out of the weekend, I realized that Donna and Kara are my ventilators! I don’t even notice many times that I AM breathing when I ‘m with them. They allow me to be just me. I’m comfortable. Relaxed. Inspired! All of the anxiety and aches and pains and exhaustion (see Ed. Note above) fall to the wayside with them.  So really, it doesn’t matter what we do as long as we just ARE.

I thought about a few more mom-friends that I knew could use a break and that I knew were also my oxygen masks. (Thank you Tracy, Trish, Jen, Angie and Shawn!) I sent Evites as a “key” to Rabinowitz Manor for the weekend:

*****

Message from Host

Okay, so it’s more like a “small cottage” rather than a manor but you get the idea…

It’s a MOMS-ONLY weekend! No husbands, No kids!

Come for a few hours or the whole weekend~how ever long you can manage to get away!

Meals to be determined by when we are hungry and what we want to order out. I will have some “basics” and snacks but otherwise I am keeping my cooking to a minimum. If YOU on the other hand, want to cook, then please feel free!  😉

What to bring:
*Beverage(s) of your choice. (I will have soda and some beer and wine)
*A craft, a book, and/or movie. (We have 3 DVD players and Netflix).
*If you plan to stay over night, beds and couches are first come, first served. Feel free to bring your own pillow and blanket though I do have extras. I also have plenty of towels but you may want to bring your own toiletries.  
*Whatever you want/need to have a comfortable, laze-around time!

This is an easy-breezy, über casual, free-skate weekend!

Please RSVP just so I kind of have an idea of who is coming and when. ~I promise not to hold you to it if you need to change things up!

*****

So, it is THIS coming weekend that I plan to craft and eat and drink and just BE. Breathing will be optional.

~A ginormous THANK YOU to my ventilators, Donna and Kara! I cannot express just how much you girls mean to me! And to my husband, Grant,  I love and thank you from the bottom of my soul for everything that you do, ALWAYS! ❤ ❤ ❤ ~

Good Morning Peep, Chirp & Quack

This morning at 6:30pm I was awakened by my little dude. He crawled into bed and snuggled up, sleepily asking, “Watch a show?”

I rolled over just enough to reach for the TV remote from the dressing table but not enough to disturb his closeness. I immediately relinquished the remote and his fingers deftly worked the buttons to search for the subject of his latest intense interest.  PEEP and the Big Wide World. Morning, noon, night and various times in between. As I lay there, eyes closed, listening to Joan Cusack and envisioning her trying desperately to drink  soda from a can (name that movie!),  I pondered why PEEP, of all the shows we watch (we’re a TV/video family, I will admit. Temple Grandin would be appalled!) why would this one hold his interest for so long over these many past months?

The more I thought about it I began to see. Three friends, Peep, Chirp and Quack, all sort of odd in their own ways, go out and explore their “world”. They have adventures in science as they learn about their environment and each other; their differences and their sameness in their surroundings. Processing, logic, trial and error, science. Yep, right in my dude’s wheelhouse.  As Joan  continued to narrate this morning, I began to think about Henry’s world over this last week. SO MANY NEW THINGS all in one week. LOTS of new experiences and data to PROCESS. Even more when you take in to account our entire summer!

In this past week alone, Henry experienced soccer outside of our backyard for the first time, surrounded by strangers, thrown into the mix right away. At his Kindergarten orientation he went into his new classroom (eventually) at a new school for the very first time. Every single person and thing in that room was new and unknown. He had a practice bus ride. Our schedule was thrown off on top of it all this week due to that limbo time of summer when the routine of camps and activities are over but the school routine hasn’t started yet. The weeks where we try to cram in all the last minute running, preparations and appointments before the school year begins. And most of this week Grant has been out of town; something that is a very rare occurrence. None of us are used to him being gone for much more than a work day, let alone almost 5 days!

So much anxiety. Through the roof anxiety!  But he’s mostly been able to hold it all together at least until we got home. That’s big! That’s a major step in his learning to cope. Some things I was hoping would have gone better for him, like his soccer experience. Not quite a disaster but I wouldn’t call it a success either. But we will keep trying.  Or at least we will keep trying to keep trying other things anyway.

We’ve had a summer of success really! New things, new people in particular, he has processed and figured out and got through them, if not always with flying colors, but he did it! This spring, Maya, our RCP, came into our lives and she has made such a difference ! Henry has accepted her as someone who belongs here. That in and of itself is BIG! (I really do need to share more about our Maya! She certainly deserves more that just a mention in a blog post!) Henry participated in a mainstream part-day summer camp and actually did quite well! We have spent more time at the pool and in water this summer than ever before (with much of that opportunity because of Maya!) and that was a great success!

On Tuesday my little dude will get on a school bus and head to his first day of Kindergarten. There will so so much to take in, to explore, to process, to learn. It’s a big, wide world and it’s waiting…just for him.

PEEP’s Theme Song: 

Well, it’s a sunny day
I feel brand new
There’s about a million things
That I could do!
Whoa-oh-oh
Would you like to
Do them, too?
Yeah
Well, it’s a big wide world
And it’s waiting for me and you!

Let’s look around
What will we see?
Round every corner, a discovery!
Whoa-oh-oh
There’s no place I’d rather be!
Oh, yeah
Well, it’s a big wide world
And it’s waiting for me and you!

Written by: Eggplant Music and Sound Design

Performed by: Taj Mahal

 

[P.S. from the Editor~ Oh, yeah, and for any of you that may also be a product of the 80’s and/or “classic” movie buffs:

A Pengaroo’s “Fun”

On Tuesday I shared my experience dropping my son off at day-camp. If you missed it, check it out here. I’ve been getting inquiries as to how he did/is doing so I thought  I should post a follow-up today.

So, Tuesday, a whole THREE hours after dropping Henry and Lucy off , it was time to head back and pick up them up. Seriously. I was freaking out about THREE hours. Really?!?! Anyway, when I got there Henry was still pretty quiet but it didn’t look like he had been crying or anything and his teacher said he did “fine.” 

A little side observation here: My immediate thought at the teacher’s response  was that clearly, as lovely and wonderful as I am sure this teacher is, she teaches NT kids. Our SSD team would have been doing a happy dance right along with me! My friend, Kara, asked her daughter Ellie, who happens to have Asperger’s, how Henry did and Ellie responded with an enthusiastic, “Great!” Even Ellie gets how big these “small things” can be. And we love them for this, by the way!

Anyway, when I asked Henry how his day went I got a head-down response, “Fine. Can we go home now?” Okay. This was okay. He didn’t say it was stupid or that he hated it so I was actually relieved! Lucy, of course, loved it! No surprises there!  Later I asked Lucy how Henry did at camp.

“Well, he made paint.” Alrighty! Participation is GOOD!

I let the subject drop until yesterday afternoon when I mentioned that Thursday would be another camp day.

“In the Kangaroo room, Mom?” Henry asked. Each of the classrooms in the school has an assigned animal mascot.

“Yep. For summer camp you are a Kangaroo.” I reminded him.

Henry thought about this for a moment. “Wait, I’m a Penguin.”

“I know you are, Hen, but for summer camp you are a Kangaroo and for summer school you are still a Penguin. So starting next week, two days you will be a Kangaroo and two days you will be a Penguin.”

Henry seemed to be relieved by this and I could tell he was processing and the gears were turning in that head of his. “So, I’m TWO animals, right Mom?”

“Yeah, you are, Hen.”

With a smile on his face he said, “Like…like…uhh…like a Pengaroo! I’m a Pengaroo, Mom! Or maybe a Pengo for short. ”

“Dude! You ARE! That is awesome! A Pengaroo!”

“Or a Pengo for short, Mom.”

“Oh right, sure, of course, Pengo.”

“What about me?!?” Lucy chimes in. “I want to be two too! I’m a Fish and a Kangaroo. What does that make me? A Kangaroo-Fish?”

“Yeah, babe, YOU are a Kangaroo-Fish! Or, maybe you are a Fisharoo!”

“Yea! I’m a Fisharoo and Henry is a Pengaroo!”

From Henry, “Uh, Lucy, that’s Pengo for short, remember?”

I think camp will be fun for Henry. At least his version of camp and I think that’s pretty awesome! He just needs time to make it his own. So, this morning I dropped off my Pengaroo (Pengo for short!) and Fisharoo without barely a hitch! Who knows how the rest of the summer camp experience will go but I am feeling so much better about it and I think Henry is too!  

********

Addendum: I discovered later this morning that, Maya, our Respite Care Provider, had talked with him yesterday about camp to see if she could help him talk it out. My message from Maya: We talked about it yesterday. He said that it was scary being with so many new people, so we brainstormed ideas of how to make them “not new”– playing games, sharing toys, asking to race, etc. I told him that every day he goes to camp he’ll get to know the other kids more and it’ll get easier. “The more fun the more you go!” He’s gonna give it a try 🙂 ~ Thank you, Maya! You are truly a gift!

Alvin, Simon, or Theodore?

Yesterday the first half of my day was spend down in my office working. Yes, working on a Sunday of a holiday weekend. No, I am not a workaholic. The truth is I can be a procrastinator and then must pay a price…

Grant and the kids had been in and out upstairs working and playing in the yard. Mainly it was Henry coming in and out as he either gets bored and/or something of the outside has gotten too close to him. Now, as active as Henry is and as much as he loves to be outside, any  contact with nature, even remotely, that is not of his choosing, will send him scurrying inside. (The emergence of the 13 year cicadas this spring has been somewhat of an ordeal!)

So yesterday morning as I was working I heard Henry coming in through the garage to our bedroom. Grant called down to let me know that Henry was back inside which put him on my watch. Grant was heading to the hardware store with Lucy. Henry was staying home with me. It is rare for Henry to choose being with me over his dad so I figured he had had enough of the practically deafening hum of the cicadas or one had flown too close or something and he was not going back outside, even for a ride with his dad! 

It hadn’t been a minute and suddenly Henry was screaming upstairs! I jumped up and bounded up the stairs. My immediate thought was that he had just realized his dad and Lucy were leaving and either they hadn’t done the “good-bye ritual” or he had changed his mind and wanted to go along. Either of these two things will have him darting outside toward the car even if sometimes the car is already moving! As I hit the top of the stairs Grant was coming from the garage where he had just buckled Lucy into the van. Henry was on our bed screaming still. It took several second of getting Henry to calm down enough to decifer what he was trying to tell us.

He had heard a strange noise; a scratching across the bedroom floor. He wouldn’t get off the bed. He is screaming and crying and truly panicked! This is when Grant told me it wasn’t the cicadas that sent Henry inside but a chipmunk that had run across our driveway.

We were thinking that he had heard Grant out in the garage moving something  and since he had just seen the chipmunk he made an association and freaked.  I picked Henry up and carried him from our bed to the kitchen all the while he was just beside himself! In an effort to prove to him that all was okay and nothing was in the bedroom Grant was making a good show of checking our room…until I heard Grant with a sharp, “OH!”

Grant stuck his head in the kitchen to let us know that there was, in fact, a chipmunk in our room! I jumped up on the kitchen bench where Henry was standing! Henry started crying again.

“See! I told you I heard something!”

“Yep, dude, you were right! Daddy will get him, won’t you, daddy?”  I said in a perfectly calm voice. The look in my eyes saying, You WILL get that rodent OUT of our bedroom NOW!

Now Grant looked slightly freaked as he was trying to figure out how he was actually going to shoo this thing OUT! I stayed in the kitchen trying to calm Henry down as he was still in a panicked meltdown and Lucy was calmly waiting all buckled up in the van. Thankfully, Grant was able to get it out fairly quickly…don’t ask me how because I stayed firmly put in the kitchen with Henry!

We finally got Henry calmed down enough that it was safe for him to get down from the bench but now he didn’t want to stay home either. I don’t blame him as I was a bit creeped out as well. Ewwww!  So, off Henry went with Grant and Lucy to the hardware store after all. As much as I enjoy watching chipmunks on TV or out in our yard even, INSIDE our house is a different story and I’m pretty certain this one didn’t even have a record contract or movie deal!

Surf’s Up on Redefining Typical

I have been given the wonderful opportunity to be a guest blogger over at Redefining Typical created by an amazing woman, mother, and writer! Cheairs also shares her family’s journey with her son on the Autism Spectrum. I am so honored to be a small part of her wonderful blog!  Please check out my post there and read beyond my story to experience Cheairs beautiful words as well!

Thank you so very much, Cheairs!

❤ Karen

Happily Ever After…

Eight years ago today Mr. Rabinowitz made me his Mrs. Rabinowitz and so began our “happily ever after”.  We have known each other for eleven years but how we met is for another blog post another day. Today…well, today I wanted to write about my feelings for my husband, but…

I am finding my feelings too big and my words too small. My heart aches for him every moment that we are apart!  Butterflies jump into my stomach at the mere thought of him throughout my days.

He is everything to me. He is my friend that I need, my husband and father to our children that I want and he is the soul mate I have craved for all of my life.

Right now. Still and always…my feelings are too big and my words are too small.

Thank you, Grant, for all that you are and all that you inspire and encourage me to be!  You are my knight. My happily ever after. My forever.

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