Top 5 Things We Love About Jacey

The past few days have come and gone (Especially since I started this a month ago!), leaving me drained and anxious to bring home our service dog for Jacey.  I am told that she does extremely well at the Special Ed. Preschool.  The minute she gets home however, is a totally different story.  It's like she's played the good little girl all morning and has to find anything AND everything to get into!!!

Most of my afternoons with Jacey require me to be standing or on the edge of my chair.  The minute I get comfortable sitting down, is when I have to get up and find out what she is getting into.  Judd has been working later hours trying to keep up with all of his work he has stacking up.  That means that it becomes a LONG evening for me as well.  By the time 9:30 rolls around, I have been ready to crash!!!

Jacey has recently discovered the dryer.  I can't leave clean clothes sitting in it or she will take the few dirty items she can find and stick them in with the clean ones.  She has also increased her passion for wanting in my dishwasher and silverware drawer.  She also tipped Bailey and Carsten's dresser over the other day because she had to have all the drawers open.  Then she'll move on to some of her old favorites like climbing the entertainment center, finding a bathroom door left UNlocked and squirting loads of handsoap into her hands, dumping toys out of the tub just to play with the tub, unloading the bookshelf in the kids' bedroom, etc, etc.  I failed to mention that she also LOVES to climb IN the dryer, not just load it with anything and everything she can find!!!  She also has learned to love pulling out my tubs (picture shown) in the laundry room that each hold a different assortment of items - anything from coloring books, Color Wonder pens and pads of paper, File Folder Activities that I have made, shoes, hats, and coats.  My shelves go from a bench style that fits three large tubs across, to a unit that holds three large tubs from top to bottom, to a super tall unit that holds six large tubs.  (I love IKEA, where I bought them!)  Needless to say with 12 tubs each holding a different assortment, Jacey has a blast when she's snuck off to the laundry room. 

Needless to say, with the little bouncy ball that she is and has been these past few days, I thought it would be good to think of the Top Five Things We Love About Jacey.  Here they are:

1.  Her beautiful yet unruly hair that reflects so much of her personality!



2.  The way her delightful GIGGLES can make everything else disappear and bring a smile to your face!



3.  She sleeps through the night...usually!

4.  Even with the diagnosis of Autism, Jacey enjoys snuggling - on her terms of course!

5.  The way she lights up when she sees us walk into the room after being away, and then running to us with pure delight!

Jacey is a beautiful girl that we have been blessed with and love dearly.  Thanks for stopping by.

Restless BODY Syndrome

"Restless BODY Syndrome?" you ask.  Let me explain:

I once had a person tell me that a child with Autism at bedtime can be much like someone who has had MANY cups of coffee.  They are just wired and have to let it run through their system.  Tonight I would say it was a 9 or 10 cup night for Jacey.  Not as bad as when she had 23 cups a few weeks ago!  :o)

Restless Body Syndrome is another description I have come up with after laying with Jacey for forty minutes tonight.  We lay down with her every night to get her to go to sleep.  Otherwise, she is up climbing on the dresser or changing table, turning the light on and off, playing with the fan, unloading all the blankets in the drawer under the crib on top of Kenna...and all of this of course upsets Kenna who will then cry.  So we lay down with Jacey until she falls asleep.

This summer we cut out her naps and that made the time for her to fall asleep SOOO much faster.  It used to be an hour and a half, easily, before she would fall asleep.  Now, it usually takes about fifteen to maybe twenty minutes.  Except for tonight of course....

When we lay with her, we completely ignore her and (I) pretend to be asleep (Judd isn't good at pretending!).  (I'm HOPING that Jacey will allow the service dog to take over our job of laying with her!!!)  She wiggles and moves about, covering herself with her blanket and kicking her feet to make sure that they are covered too.  Then the blanket comes off and she rolls over to her other side to snuggle her blankie into her face.  That might last a few seconds before she is turning back over to her other side.  She will try to cover herself again with the blanket but decide she doesn't want it when she just about has herself completely covered.  This goes on and on and on.....Until she finally finds that magical spot and position that works for her. 

She is kind of like watching fireworks.  She is constantly wiggling, and every once in a while you think she's at her grand finale with even more wiggling and then will finally settle down.  But you discover that it is not her grand finale and the show goes on for another thirty-eight minutes!  And finally after she has had her true grand finale of wiggles, she falls asleep.  

So for the forty minutes of laying still on Jacey's bed I had a lot of time to think.  It was this time when I came up with Restless Body Syndrome.  So many people suffer with Restless Leg Syndrome, but for Jacey it is not just her legs, it is her entire body.  And tonight happened to take forty minutes for her to get it out of her system. 

....And to think if I just had half the energy she has.....

It's Been a While

I guess it has been a while since I've updated everyone on the happenings of Jacey.  Would you like an update?  I thought so....

For the past month, I have been filling out paperwork to get Jacey ready to start services through the Autism Waiver.  Officially, she was finally ready to go on September 1st.  Everything was put together that had to be done and we had a habilitation aid (hab aid) scheduled to start working with Jacey Monday through Friday from 2 - 6pm, starting yesterday.  We ended up knowing the individual that was going to be Jacey's Hab Aid.  He stayed for the full four hours yesterday just hanging out with Jacey to get her comfortable so that she will want to perform the different goals we have outlined, for him.  I got a call this morning saying that he had quit, stating that the he just wasn't cut out for that line of work.  I was so excited to have things in place SOOO quickly.  I am grateful that he chose to leave the job quickly rather than hang out for some time and then quit.  Needless to say, it was a disappointment because they are currently short on Hab Aid's and there is no one to replace him.  So nothing is scheduled for now with ABA (Applied Behavioral Analysis).

On a happier note, I finally got the video that 4 Paws wanted showing Jacey and everything about us.  It was just over two hours long.  Also, Jacey has started in a self-contained Special Education Preschool.  It is in "town", so I get to be her bus driver and take her there everyday, all 16.1 miles one way.  She is doing fairly well and as her teacher put it, "She's not one of the one's that stands out."  (Meaning she is fairly content with minimal meltdowns.)  She has speech twice a week, OT (Occupational Therapy) once a week, and we are working on getting PT (Physical Therapy) worked into her IEP (Individualized Education Plan) for once a week.  I know, it's amazing how many acronyms you learn as a parent of a special needs child!  Needless to say, she is pretty content at school - they have a sand table that is also used as a water table occasionally, they have baby dolls, a little kitchen area, and more.  She's usually found transferring the water or sand, whichever it is for that day.

It's funny because a few days ago, while working on our video for 4 Paws, I thought about how Jacey's "need" of a service dog may not have been as great as some of the other children I know receiving them through 4 Paws.  And then today HIT!  Let me brief you on it...

We've noticed in the past six months or so that Jacey has gotten a LOT happier.  Believe me, she still has her moments but they seem to be fewer and farther between.  Until today.  After I arrived at the preschool to pick her up, she noticed an open door that I hadn't seen.  She bolted for it.  I had to set Kenna down and run to get her.  She had just barely made it out the door, which turns out to be a door to their play area.  After that, she didn't want to walk the same way Mom was going.  She'd rather sit since she wasn't getting to go out "her" door.  My arms were a little full between carrying Kenna, Jacey's lunch box and her coat.  It was quite the fight to get her to our van.  After fighting her to get to the van, I was pooped.  I still had all afternoon to wrangle her.  My day became that much longer as she cried and screamed the entire ride home - all twenty something minutes! 

Getting home where she could run didn't soothe her enough and so I continued to listen to her cry.  It didn't help that Kenna decided to chime in and become a little duet with her sister.  Both girls were demanding my arms and my attention.  I figure it was at least three hours of Jacey crying for long periods of time with short bits of silence (I assume to catch her breath).  :o)  Jacey was tired, as evidenced by several yawns.  But we have cut out her naps so that laying down with her at bedtime would become a max of twenty-five minutes, compared to an hour and a half when she was taking naps. 

Needless to say, my sweet little reminder chimed in today to tell me that yes, her "needs" for a service dog are just as great as any other childs.  I was also reminded of the sanity the dog will bring to me.  ::sigh::

I am so grateful to be heading to Ohio THIS year.  I thought for sure that we would still be fundraising well into 2011.  I've had the men and women on Trapperman.com and the individual donors in my mind a lot lately.  Without them, we would not be going to Ohio in eighty-two days. 

I had to go to the bank today to figure out where three unknown deposits to our Donation Account for Jacey had come from.  Two of the three were made in cash.  In case you are one of those three mystery deposits, thank you for your donation to our account.  Jacey is a very special little girl to have so much love surrounding her.  Hopefully soon, there will be a fence surrounding her as well!  :o)  That one is still in the works because of numbers. 

Until next time...pray for my sanity!