December 27, 2011

who needs a trash compactor?

I love that Nevin is always willing to help out!   he doesn't complain and always seems to find a way to make it fun.    ... and just to explain, he brings in the big blue recycle box, empties the purple "recycler" from  in the pantry and then stands in it to BE the compactor.   :)

December 21, 2011

Thanks, Reagan!!

Nevin got his first Christmas gift today from his friend, Reagan.  
A Nerf Gun.

Really cool !! 

lot's of bullets

his idea!!

yup, still his idea!  

"who, me?"

"it's ok, Rosie, I put it away!"

December 14, 2011

Nevin photoblog post

Nevin posted about the HADSA Christmas party.  Lot's of fun and a special girl.    
You can link to his photoblog  about the party   
 here  and here

here is a couple of my favorite picts

December 6, 2011

Open the eyes!!

oh, my Lord, thank you for blessing my heart today!

December 1, 2011

Oh, what fun.....

Nevin and his friend, Chris went to a Hawkeye Game last night Tuesday night.  Oh. My. Goodness.  can you say EXCITED!!   When Nevin got home, he was still in his "post-adrenalin" high  (even though it was late... about 11:00 pm and they had a 45 minute drive home).    He was still bubbling, talking, doing his modified cartwheels while he talked, ....   whew.......     

Nevin has been blessed beyond measure by his friend, Chris!!  Chris and Nevin started working together about 6? years ago.   Nevin has learned SO much from his friend!  Chris has been a wonderful teacher, mentor, friend.   
 Nevin posted all of his pictures  and his "stories" from the evening on HIS photoblog.

November 23, 2011

I am Thankful for......

I am so very thankful for the children that God blessed me with.
 They bless me beyond measure.
 Their love for each other makes my heart full.
 How each so very different from the other,
was designed specifically by God to fill my heart perfectly.
 Different, yet one..... one family..... one love.
 oh, my heart!!  is so very, very blessed!

November 14, 2011

our BIG.... BUSY life!

Oh, my......  our BIG life has almost been too big to handle lately!! but not in a fun way.  My work has changed a bit as my assignment has increased to cover some "vacant" positions.   This has been quite a scheduling nightmare as I've tried to keep up with both home and work.

It seems our "BIGness" has had both upsides and downsides lately.

Upside:  Nevin got his new iPad,
Downside:  I am scrambling to learn faster than him so that I can keep him safe on it.   He LOVES to search youtube for "clips" from all his favorite movies, however the youtube environment...... ESPECIALLY on an iPad is not a safe environment.  And the YouTube App doesn't allow for any "safesearch" like the website does.  So I've been experimenting with adding "shortcut to webpage" to give him access to youtube with safesearch on..... FAIL!!   YouTube iPad browser is still "accessible".   Sooo...... removed shortcut.   Much to "someone's" dismay  :(    Now we also can't use some of our educational videos from the WatchKnow App.  sooo.... still a FAIL.

Upside:  I got a new iPad for work (even more upside..... they bought it for me!)
Downside:  Wow, what a learning curve!!  as someone who hasn't had a smartphone, I am STRUGGLING with my calendars.   Synching work email, work calendars, home calendar, home email, etc. etc.   I am not able to keep my paper calendar and my "digital calendar" both up to date.  FORCING myself to "let go" of my paper calendar,  but my visual learner brain..... is really struggling with not being able to flip open my "calendar" and "SEE" it.

Upside:  Nevin has two special people who are starting to do respite with him.  Upside:  this has the potential to assist me in my current scheduling nightmares  Upside: Nevin gets to spend more time with two people who are very important to him..... his brother, Nolan (because he is currently laid off work) and his friend, Reagan.
Downside:  Since we are doing CCO (Consumer Choice Option) to manage Nevin's services...This has meant extra time on my part in getting them "hired","set-up", "scheduled", etc.

Upside:  I am meeting new precious children and their families.... as my work time expands..
Downside:  As I negotiate this transition, I feel like I'm not meeting everyone's needs.

Upside:  I'm getting the chance to work with older kids..... and that has meant even some of the ones that I worked with when they were babies.....   What fun!

Downside:  I have been working in Early Intervention with little ones/families and I haven't worked in the schools for many years.....  it is a very different setting, requires a different mindset, has a different paperwork process (IEP's)  that has been changed multiple since I last wrote one...... and mostly doesn't allow for lots of the parent connection that I crave and need to feel like I'm serving children the best I can.

Upside:  We bought a travel trailer and are planning a trip south for a couple weeks this winter.!!  Yippee.
Downside:  This has meant a learning curve for us, mostly my hubbie, as we learn to winterize, get our almost 20 year old Suburban ready to pull a 15 year old trailer.   While he's been awesome about assuming responsibility of his new role...... he also would like to spend lot's of time talking about it...... and my time and energy has not allowed me to be a very good listener/active participant in this endeavor.  :(
Downside:  We just figured out that SeaWorld in San Antonio is closed in January and February.   It was our planned "Main Attraction"  :(   So now hubbie would like to spend lot's of time researching/discussing/planning where else we can go.    ....... and again I say "my time and energy has not allowed me to be a very good listener/active participant in this endeavor".  :(

Upside in general:  God is showing me A.G.A.I.N., that only in my broken-ness and surrender can he use me for his glory.  Upside:  sermon at church today.....  reminded me of that  :)
Downside in general:  don't feel like I'm keeping all the balls in the air.  And the stress has taken a toll on my immune system.
Upside:  God has gifted us with caring doctors who prescribe antibiotics for ear infection, prednisone for inflammation.......  and today, finally after 9 days of my ear hurting and ringing, headaches, neck soreness and swollen lymph nodes..... I am feeling better!  physically, emotionally and spiritually.
At least until tomorrow..... (actually, 1:30 in the morning now..... so later today....) when I forget all the upsides...... and can only think of the downsides!

Nevin and I spent some time on the computer together yesterday....... and he was so proud of our "artwork", guiding me through pictures to find one of him with short hair like Curly, goofy look like Curly,  making sure I "noted" that they are twins  ....... thought I'd share!   Think I'll print it and take it with me today!!

October 23, 2011

Uncle Jeff

Some things are just so very special that there aren't words.
That would be what this relationship is.  I kept putting off posting, because I couldn't find words to describe.....  sooo, instead....... Nevin posted.  :)  
Who needs words?  Pictures are worth 1000.

Nevin has a new post on his photoblog.  

October 21, 2011

October is Down Syndrome Awareness month!

We want to support all those that rock that extra chromosome with a blog hop on the 21st! 
p.s. adding that.... I don't exactly know what I'm doing, but hope to make some new bloggin' friends!   join me on my first blog hop!  :)

October 12, 2011

New iPad & Double Trouble!! :)

So Nevin finally got his new iPad.  Actually, he and I are sharing.  But today was the first day, so it was his today.   I didn't put many apps on it yet, but he still was very excited to check it out.  This evening I sat down with it to do my own playing...... and when I opened it up.   This is what I saw!!  
I'm not sure how he did it, but even by himself with a new iPad.... 
 he is Livin' Life BIG!!  

October 10, 2011

Buddy WALK!!

We had absolutely beautiful weather!!   and had a great time.   Nevin was a "star".... and announced to the whole crowd that now that he is 21 he can drink beer! (thank you Erin, for that little "prompt" :)   I tried to post the video, but it must be too big to post on blogger..... cause it keeps giving me error messages.  So you're gonna have to settle for just pictures ;)

 Boys!!  we're supposed to be setting up!!
Ta Daa!!  our table
and our special guests!!  
The DeLlanos family.  
Timothy has been HOME for almost a year now.
I love this picture....  Nevin got to draw the name of who won the iPad2 raffle.

I love both these boys!!
Nevin is 21 and Daniel is 1.  :)

and my very special friend, Isabel came to share our day, too.

What a wonderful day to celebrate with people who "get it"!!
People who understand the blessing of that extra chromosome.  :)

October 6, 2011

Nevin's Card !!

We ordered some business cards to give out at the Buddy walk primarily so that they could order bumper stickers or other "future"  Live Life BIG  items "hint hint" :)  and maybe some give-aways.
Oh, should have seen Nevin's face when we picked them up. 
 He definitely felt important!! 
I'm thinking you better come to the buddy walk so he can give you one of his cards!!

October 5, 2011

The Blog.....

oh, my goodness....... all I needed to do was figure out how to add tabs!  My friend, Amy, gave me a short tutorial..... so I felt ready to tackle it.    And before I knew it...... I had completely lost my old template and was deep in a "re-design" whether I wanted to do it or not!!
  Whew,  then finally...... I have tabs......  clicked on Nevin's photoblog tab..... and realized that this week they have done a huge change in formatting there!  yikes....  at first I thought I had somehow messed it up, too.
   So for now,  I have tabs.   and a new color and a new picture..... but the picture is bigger than I wanted it to be..... but I can't figure that out either.  I need a blogger for dummies book.

   Next a new chip-in!

**ok, update......   got the picture smaller, not can't figure out how to center it!  I give up!!  goin' to bed.

October 4, 2011

Nevin has been invited to speak as a self-advocate and also to talk a little about Reece's Rainbow.  Yikes!! don't they know it makes me terribly nervous when people give Nevin license to speak to a large group :)  You never know what he is going to say.   AND...... this is a large group of people (expecting 700 people!!) who will probably understand what he says!!   :D

and.......  guess where we went this last weekend!!  
the Omaha Zoo and the Strategic Air and Space Museum!   what fun!    
here is few teaser pictures........... more to come!

October 1, 2011

Bumper Stickers!!

We have a new bumper sticker!! we will be selling both of them to benefit Reece's Rainbow at our Buddy Walk on Saturday, October 8th!!  I will also be adding a chip-in so that you can get bumper stickers via a direct online donation.
    however.........  I'm currently in process of trying to figure out how to add tabs, do a new chip-in, etc. for the bumper stickers.   Soooo........   coming soon!!    or  maybe we'll see you at the buddy walk!!

September 30, 2011

James Bond

Here is Nevin after his garage sale leftover find.   
He is thrilled to have a James Bond briefcase 
WITH it's very own secret code!!
(thanks Russ!)

Too bad he didn't have his "James Bond briefcase" 
on the day that he looked like James Bond!
(at his friend, Chris's wedding)

but I guarantee you that next time he rents a tux....
he will have the perfect accessory.

September 26, 2011

A family grieves, Heavens rejoice......

A sweet family from our church suddenly and unexpectedly lost their sweet 3 yr old girl.  While the heavens rejoice at Vivian's arrival, her precious family grieves their loss, while knowing she is fully healed and able to be a happy, skipping toddler in heaven.
Please join me in prayer for Vivian's family.

FUN on your way to work?

Seriously,  how many of you GET to have this much fun transporting your son to work?
Me, I prefer quiet.  I like music, but not loud rock'n roll music.
Nevin, however, seems to need it to "wake up his brain".
So this is our routine trip to his work in the  morning.
Clutters my brain,  but gets his going!  
(and yes, I was driving... but I wasn't looking at my camera,
 just taking a chance it would turn out)

sometimes, we trade off parts..... 
air guitar, air drums and air piano

"bye Nev, work hard, make me proud!!"
(he always does.... but likes to know how proud I am)
"bye mom!! " 
oh, my,......thank you God for this blessing!!

September 24, 2011

Quarry Quest: Part 2

Yaba Daba Doo!!
Some of us need to practice our salute a little bit!  :)


Nevin has a very deep respect for military, 
and always wants his picture with soldiers.
 Yes, sir!!  
"I'm in the Army now!!"  

..... and next..... the BIG crane!!
He loves that this picture looks like he's operating the crane himself!

The voluteers were all wonderful.  She is congratulating him
for his expert crane operation.

Then..... Nevin climbed the sand mountain......
 He stood at the top for a long time,
I was worried that he couldn't figure out how to get down.
(he really does struggle with depth perception and going down stairs...
 so it was a legitimate concern.)
I figured out he was just waiting for kids to clear out and make way.
He came rolling down, arms and legs flyin'.  
 this was the first "dumping" of sand ..... 
but we kept finding it in pockets for days.

lastly..... Nevin's very favorite!!
The Lift (or cherry picker, depending on who is talking)

.....can you tell that Nevin is anxious to do the lift?  :)
 He was REALLY proud of the fact that he talked ME into doing the lift.
He knows I hate heights......

This was the best I could do with one hand white knuckled on the rail
and one hand to run the camera!!
It was a wonderful day!!  We are definitely going back next September!