Monday, October 10, 2011

Job's Heaps of Ashes & My Bowl of Shards

I have two different ideas swimming around in my head this morning as I sit down to write.  I've sat down to write several times in the past couple of weeks but I get distracted by all sorts.  But this morning, I'm going ahead and applying some focus.  I was recently talking to a friend from church about what I've termed, "My Big Bowl of Dreams." In this bowl, I placed the things I most wanted in my life:  a husband, a career, children, happiness, etc.  There's not too much in this bowl that I felt was far-fetched or unattainable...certainly no pipe dreams.  But God seems to be teaching me lately that my bowl of dreams holds too many of my own plans.  I feel the pull of His perfect will on the edge of my bowl as a I keep my death grip on the opposite edge.  I can't say if I'm ready to relinquish.  There are so many unfulfilled dreams in that bowl--good dreams, with purpose and wonderful intention.  There are broken dreams whose pieces I cannot just discard.  And sometimes, I can't tell what's broken and what's whole.  Sometimes, it feels like the whole, damn bowl is filled with nothing but shards.

I own a beautiful set of Haviland china that belonged to my grandmother.  It is old and in the way of sentimentality, priceless.  Recently, a saucer from that set broke.  Since it is authentic china, it did not glue well.  I held onto those pieces stubbornly.  Sure it wasn't good to use, broken as it was.  But I just couldn't dump it in the trash.  I reasoned that if I just let it keep company in my "junk drawer," eventually, I would come up with some creative use for the pieces that allowed me to hold onto them.  But eventually, I just had no place left for those fractured, sad pieces.  And the idea that Hayden might find the sharp edges and hurt herself was enough for me to finally let them go.  My comfort was that I still had the rest of the set, unbroken and still precious.

So, you see, I have a hard time just dumping the pieces of those broken dreams.  Because what if I could glue them back together or even find a use for the pieces?  But history and experience tell me that I will have to let them go (both for practicality as well as safety).  More than once, I've hugged those slivers too closely, mourning their loss, but cutting myself with the sharpness of their jagged edges.  And while my analogy above makes perfect, logical sense, easier said than done.

To parallel this inner struggle, I have been dealing with an outer struggle in the way of services offered here in PA.  There is no system on earth that is not in desperate need of restructure.  PA's services for special needs children is no different.  Here is the short-list version of our fracas with the system:

*The case worker who referred Hayden for services insisted that she would never handle in-office behavioral therapy and pushed the in-home therapy with only a 20 minute interview, despite my explaining that Hayden does not handle unfamiliar, clinical settings well at all.

*The in-home therapy is not therapy but a "skills transfer" program to help parents deal with negative and troublesome behaviors; of which I need no assistance, as witnessed and attested by our behavioral specialist consultant.


*We were told about social skills play groups & encouraged to get involved with them by the psychologist who even gave us pamphlets but didn't include that option in his report so we would have to get an addendum.


*Upon trying to get the addendum (which you are supposed to be able to just call in, have the psych review the eval, and write it out for you) and having to call two different places just to get in touch with the psychologist, we were told that we had to email him directly and that he would probably require another face-to-face meeting with us and Hayden to write out the addendum


*This same psychologist, who did Hayden's initial eval, "included" info (more like, copied & pasted from another source) that in no way pertains to her (ex: work on getting along better with siblings, work on eliminating self-injurious behavior).


*I was informed that obtaining a case manager would help me navigate the system more easily.  Hayden's behavioral specialist consultant recommended that we ask specifically for a "Blended Case Manager" who would be more hands-on and helpful in recommending programs, opportunities, grants, etc., for which Hayden would qualify. Upon meeting with a representative from the service unit that was recommended to me, I was told that there was no difference between a Blended Case Manager and an Administrative Case Manager--which I was informed later is completely untrue.  It took us 3 appointments to finally get a Blended Case Manager.


*The Blended Case Manager to whom we were assigned met with me once and returned 3 of my 7 phone calls, one of which was the call she placed to me to discontinue services after I switched to a different service provider.


*The first Therapeutic Staff Support employee who was assigned to us to work with Hayden in our home (think Behavioral Therapy) quit after meeting us.  The second one, did not speak English as a native language and her accent was so thick, I could hardly understand her, let alone Hayden, so we discontinued with her.  The third was great...for the first 2 meetings and then she just stopped coming...even though she was supposed to come to our house 2-3 times a week.

All of that to say that our initial excitement over the services we thought we were coming into have been tempered by the reality of a damaged system.  But again, logic wins out here.  We HAVE to use this system, broken as it is.  We are not independently wealthy.  We need the funding provided so that Hayden can get therapy and participate in social skills groups.  And while there have been issues and headaches, there are also blessings.  Hayden's team at school is just amazing.  We've often said that the one of the only good things about living in Bartlesville, was that Hayden's team at school was exemplary:  caring, knowledgeable, willing to work with Hayden, understanding, and compassionate.  We are blessed to have another team cut from the same cloth.  And this is just one of the many blessings that we've been given here, despite all the BS.

So if I can easily toss aside the pieces of my broken "dream" for a perfect system, and focus instead on the shiny orbs of blessing that have been given to us in spite of all the messiness, why can't I do that with my other broken dreams?  It is a mystery to me right now.  I guess I will just keep on opening my heart to God's healing salve and continue to let him pry my hands off the edge of my bowl, finger by finger.

Saturday, August 13, 2011

The Business End of Things

I have a mish-mash of thoughts lining up in my mind tonight, each waiting (some more impatiently than others) for their turn to be dealt with.  Some won't get too much dealing, however, as there is not much for me to deal with. But nevertheless, here are a few worth mentioning:

We have begun climbing the hill toward Crazy Schedule Plunge.  In case my metaphor was confusing, that means that it's about to get all crazy up in here, ya'll.  In the process of ironing out and organizing the therapy and school Hayden needs and will begin soon, we have undergone 4 different evaluations and at least 3 different IEP meetings.  We aren't finished yet, either.  This week has 4 different meetings on the calendar, ranging from visiting her classroom to speech eval to case management to physical therapy.  When it's all said and done, she will be receiving 10 hours (yes, 10 hours) of behavioral therapy weekly, in addition to school.  She will also receive occupational therapy once a week, physical therapy once a month, and speech therapy probably at least twice a week.  (The eval for speech is this week and will determine how often she will have speech therapy sessions.) 

The behavioral therapy is the one that has really thrown me for a loop because of the sheer quantity that is being offered.  Technically, she will be cleared to receive 14 hours of behavioral therapy. 10 of which will be conducted in our home and done by a Bachelor's level TSS (can't remember what that stands for right at the moment...).  The other 4 hours are conducted by a Master's level clinician but they are not done weekly...I don't think.  When I first reviewed what was being proposed I thought to myself, "Whaaat?  14 hours a week?  Holy cow, are we going to have to give them living space in our Harry Potter closet under the stairs??"  But at an IEP meeting, the district coordinator with whom I've been working said that they use some of those hours in the school setting and so they wouldn't all have to be conducted at home.  So I was relieved...at least momentarily.  I went to the meeting with the county folks who head up all of the behavioral therapy and the lovely psychologist who did Hayden's eval didn't make mention of using these services during school.  Because of that omission, right now, ALL of the hours have to be conducted at home.  In order to get that changed, the psychologist has to write a script to include that and they have to make changes to her overall plan.  But at least it's changeable, right?  Hmmmmm....we shall see.

One of the other things that the county people told me was to take advantage of a program called Case Management.  Basically, they assign a social worker to help me manage Hayden's case...the business end of things, anyway.  They call and get Hayden enrolled in certain programs that she'd be eligible for, they talk to clinicians and physicians and make sure scripts get sent where they need to be sent, etc.  Part of me is very excited to have help in navigating this world of therapy and rules and such.  The other part of me enjoys the challenging, "job-y-ness" of this and isn't so sure she wants to relinquish control.  But I've set up a meeting and at the very least, I can say no, right?

So how is Hayden dealing with all of this, you ask?  Well, so far, sweet obliviousness.  She knows that at therapy, there are no doctors and no one-two-three-pinches.  She gets frustrated with therapy, though, because they like her to do things she doesn't feel inclined to do.  She has been asking for school so I know she's excited about that.  Soon, we will go get her some school supplies and clothes and a new lunch box and that will be pretty exciting to her.  She thrives under the strict routine, though, so I think that she will just love it when she starts.

So our summer is winding down and that's great because it has felt a little on the long-lasting side.  We are ready for routine.  Some fun anecdotal info to share before I go:

*Hayden has begun praying.  Her two prayers are, "Dear Jesus, thank you for my Mommy & Daddy!" and "Dear Jesus, thank you for my food!"  This is sweet, heavenly music to this mommy's ears. :)

*I FINALLY got accepted by tutor.com and will be able to tutor online while Hayden is in school.  I can even pick up some floating hours now! Yay for extra income!

*Kelly had a meeting with his boss that went spectacularly and seem to lift 100 lbs. of worry from his chest.  We prayed hard about that meeting and so I know it was a direct answer to many prayers. God is so good!

*Our kitty Leo is missing.  This is not happy news but it warrants saying.  He sneaked outside while I was bringing in groceries and I just didn't notice and 24 hours later, I realized he was gone.  We are still searching but we feel awful about it.

That's about it for us, for now, folks.  It's time I get on, though.  Nudity reigns in our house right now so we're gonna go panty-up and get in bed. :) Loves & hugs to you all.


Sunday, June 19, 2011

Summertime and the Livin' Is Easy...

Nothin' says summer like vacations & celebrations!  We started our summer with both.

I asked my new friends & their kiddos over to celebrate Hayden's birthday a couple of days before we departed for VA to see my parents & sister.  The first number 5 birthday party was a big success!  I baked chocolate cupcakes from scratch with pink petal icing tops and a mini cake of the same kind all covered in the pink icing petals.  Our new friends, Susan and her boys Carter & Brody attended as well as Susan's sister, Sarah and her daughter Riley.  They brought balloons and made Hayden a very sparkly and fantastical poster!  She received a princess Cinderella doll from Sarah & Riley, complete with a crown, blue dress, & blue slip-on shoes.  Susan, Carter, & Brody made Hayden a princess treasure box which is just too cute!  And they filled it with all sorts of princess goodies like a pair of homemade princess flip-flops, princess necklaces, bracelets, & rings, a princess-themed paddle ball, a princess pen, and a package of princess tattoos!  There was dancing and frolicking and just an all-around great time!

Opening Princess Cinderella doll
Boogie down to the sounds of Lady Gaga!
The beautiful princess treasure box!
Singing Happy Birthday to the Birthday Girl
Blowing out the candles!
Eating the cupcake!
Partiers hangin' out in the bed with a load of unfolded, clean laundry. :)
The awesome birthday banner/poster that our new friends made

On Thursday, the 9th, we were off to VA to visit my family & celebrate Hayden's birthday with them.  It was great to see them again and such a wonderful thing to drive only 7 hours instead of 20!  We went to the beach and swam our hearts out...and we all got burnt to a crisp!  We grabbed some Dumar's ice cream afterward and it was the perfect treat for an after-beach activity. :)  We ate some truly delicious meals thanks to the amazing cooking skills of my mom, dad, & sis...ribs, fresh corn on the cob, hamburgers, fried oysters, roasted garlic & brie on french bread, gazpacho al andaluz, shrimp (yes, I can eat shrimp again!!! Wheeee!!), low country boil, seared scallops, & burgundy beef.   We had a birthday party for Hayden & my mom with a red velvet princess cake topped with a princess castle and 4 of the Disney princesses for Hayden, and an amazing homemade tiramisu for my mom...complete with homemade, gluten-free lady fingers...my sister is so talented in the culinary arts!! :)  We went to the Children's Museum of Virginia which is in downtown Portsmouth.  She had B-last in that place!  There were all kinds of hands-on activities...some of her favorites were playing in the Vet's Clinic with the stuffed animals, pretending to be a Vet, the grocery store where she stocked up on every ear of plastic corn they had, and the play area where she played with stuffed animals for a good 45 minutes of our visit.  As an added & amazing plus, in the pretend bank, Hayden wrote her name on the dry-erase check all by herself!  I was overjoyed & very proud!  We enjoyed a worship service at my parents' church, First Baptist Church, Norfolk.  They even have a Special Needs Ministry, so Hayden got to have a buddy stay with her in her class during the service! :)  I got to hit up the International Market & the organic store at the Farmer's Market with my sis.  It was truly a wonderful visit with lots of fun, good food, great conversation, and time with our family. :)

The tiny, blurry sign with the green on top & the brown on bottom is the sign for the Antietam Creek National Battlefield. :)
Ridin' the new trike!
Inside the ginormous train display
In the tube, leading to the bubble inside the ginormous train display
Daddy in a fire truck
Hayden in a fire truck
Nanny & PawPaw puttin' out a fire
Ridin' a police motorcycle...or as she referred to it today, a "motor-bicle"
Checkin' out the pets in the Vet's Clinic
PawPaw helps with the Vet's coat
Ridin' a turtle
The play area...I want a couch like this to put in her room!
Dr. Hayden & Daddy pose for a pic
Checking out the baby as Dr. Hayden Couri :)
Hayden in some teeth. :)
This was 100% Hayden's effort!  Yay Hayden!
The Princess Birthday Cake
Nanny & PawPaw celebrate the birthday girl! :)

For her birthday, Hayden got a tricycle from Nanny & PawPaw (my parents) and a dry erase board with markers and an eraser from Grandma & Grandpa (Kelly's parents).  She also received a gift from Nana Carlene & Great-Grandpa Paul with which she purchased a pink elephant, tiny puppy, & an Elmo book with an Elmo beanie baby (all her choices!).  Great Grandma Gail & Papa Jerry sent her a monetary gift as well, and we purchased the special edition Cinderella DVD for her.  We bought her a mini-trampoline & the special princess castle cake topper.

The Princess Castle & Princesses
Pink tricycle complete with basket for the babies!
Dry erase markers!
Dry erase markers & the eraser for her board
Drawing a pic of Kelly on her board. :)

It was a fabulous way to begin our first summer in PA.  For the rest of the summer, we are looking forward to pool trips, get-togethers with our new friends, visits from family, and preparing to start Kindergarten in the fall. We were all a little reluctant, I think, to come back to reality after such a restful vacation. But we know that we'll get back into the swing of things and relish all the memories of our great summer kick-off! :)

Tuesday, May 10, 2011

The Thick and Thin Of It All

After some perusal today, I found that I had never blogged about our second and most accurate diagnosis of Hayden's behavior.  It came to my attention in reviewing my very first post of this blog.  We seemed (or rather, I seemed) quite content with partial and ambiguous results from the testing Hayden underwent back in September.  Since then, Kelly has said, "That was a waste of time and money."  And while I usually don't agree with his negative view on crap-tastic situations, it kind of was.  What it did do was help he and I to face the dreaded "A" word and begin to accept what was recently confirmed:  Our daughter has autism.

This time, we said the words, "We want her tested for AUTISM."  Our ambiguity in what we asked for the first time may explain why we were given an ambiguous result.  Sometimes, a psychologist operates under the axiom that to label is to doom a child to a fate worse than death...if you'll pardon the hyperbole.  Nevertheless, we were unsatisfied the first time because deep down, we knew.  We had begun to walk that road of realization and acceptance the minute we considered testing at all.  And left with no more clarity than what we had started with, we knew we weren't finished.  We had to wait, however, because of the cost.

To go into the lengthy details of how we were finally able to obtain the 2nd diagnosis would be an exercise in misery for you, our readers, because it involved a whole lot of insurance BS.  Suffice it to say that at the last minute, we qualified for Sooner care (which, for those of you who are not familiar w/ OK, is Oklahoma state-paid Medicaid).  Sooner care covers the cost of testing for autism and other psychological and neurological issues so being accepted meant that they (eventually) footed the bill and we were in.

Hayden's testing was to cover three days:  Day 1 was a parent interview.  Day 2 was to be testing.  And Day 3 was a final parent heart-to-heart.  This was good news to us because the last time  had spanned an entire month and four or five different sessions--all a ginormous pain in the ass. Day 1 went well.  The psychologist was receptive to what we said, agreed with our concern based on her evaluation of what has become the novel of paperwork that makes up Hayden's file, and laid out the game plan.

The first day of testing was a week later.  And it was just awful.  Firstly, upon entering the office, the door to the play therapy room was wide open and in plain sight of the main office door.  Hayden wrenched her hand away from me, making a bee-line to all the toys within that room.  Kelly intercepted her and tried to point her in the direction of the toy castle in the waiting room while I tried to check us in.  She got away from him and took off down the hallway of the office.  As I was just starting to panic, someone who worked there told us that there was another waiting room at the end of the hallway and that it was OK for us to go there, too.  Kelly went after her and I heard no wailing or screaming so I figured everything was alright.
Upon joining my family in waiting room #2, I thought we were saved by the TV/DVD player in the corner.  We both calmed down even more when we discovered a Cars DVD in the thing and let it start playing.

Lulled into a short-lived sense of relief, we were side-swiped when a mom, dad, and little boy with grandma and grandpa in-tow crowded the room and started having a rather loud conversation.  Loudness tends to, first, key Hayden up to activity of very hyper proportions and makes any boundaries that she might even remotely be aware of, disappear entirely.  She alternated between running up the the parents and grandparents, snuggling next to the boy, running down the hall into a PT room and jumping on the equipment therein, rolling on the floor, bouncing on the couch, and generally causing Kelly and I to want to sit on her until it was our turn.  After the key-up, though, comes her inability to calm down and then any trigger will push her over the edge into a meltdown.

That came for us when the psychologist came to get us to begin our session.  She had returned to watching Cars for a couple of minutes just prior to this and was not at all cool with leaving it to go to a doctor's office.  She started panicking as the doctor's office is probably her least favorite place.  So, to keep track, she had already been disappointed by being torn away from what looked like a perfectly good play room; she was keyed up by the Loudy-McLoudertons; she was peeved at leaving Cars; and she was starting to panic because this looked an awful lot like the place to which I drag her to get "one-two-three pinches."

Finally sequestered in the little office, there was a 20-30 minute meltdown of unseen proportions--luckily, Hayden does not get destructive so much as she is loud.  But we did have to go to the bathroom to "calm down" where I proceeded to lose it which only made her more upset.  In trying to calm her down, I sprinkled water in her face to cool her off.  Though, sprinkle is such a nice word.  Not my finest mommy-moment but honesty and transparency are needed here so I will just say it:  I flicked the water on her with much frustration.  Of course, guilt assaulted me at every growl I uttered, at every angry face I made, and the water made me feel like perhaps someone with far more composure than I should just take over being her mom.  And I remembered right after I did it, Hayden's newest sensory issue was being wet while in clothes.  She would get super-upset when this happened and would undress and/or throw a fit until someone produced a change of clothes.  The dumb-ass that I am, practically dumped water on her...to try to calm her down!! *Sigh*

Somehow, we made it back.  And our psychologist was wonderful as Hayden spent the rest of the testing session that day in her panties.  Unfortunately, our little melee caused the psych to recommend that we finish in a 2nd session, which we did.  Going back, I was nervous.  I told my husband that we were staying in the car until the last possible moment so no waiting would get in the way of our focus.  I kept wondering what she would remember.  She was nervous walking into the office but the first thing she said, almost pleadingly, was, "Take off pants?"  That calmed me a bit and this day went much more smoothly but overall was still painstaking.  Hayden doesn't like to test and knows when she's being tested.  So it is very literally like pulling teeth to get from question to question.

The last day was the parent pow-wow.  And it was informative and oddly, a bit of a relief to have it said aloud by a professional who knows:  Hayden has autism.  Her formal diagnosis is Autistic Disorder with Attention Deficit/Hyperactivity traits (Apparently, according to the DSM-IV, one cannot have a co-morbidity of an ASD and ADHD...weird but as she does very obviously have it, they just label it as her having "traits.") She also has the diagnosis of Disruptive Behavior Disorder-Not Otherwise Specified.  The name is almost humorous.  I know that parents, across the land, would give their child this diagnosis in a heartbeat, any other issue or not.  But apparently, this is because of her autism.  And to be perfectly honest, I feel like Day #1 is responsible for this.  And here's why:  I looked it up to see what the big deal was about this.  Apparently, it is behavior that is over and beyond what is considered "typical" for children on the spectrum.  Now, I've read and heard some pretty harrowing tales about furniture being thrown about, parents being hit, bit, smacked, and kicked.  Hayden does none of this.  She is loud.  And calming is a long time in coming.  And at most, she squeezes me in a bear hug and grits her teeth.  But hit, kicked, or bit me?  No.  Thrown furniture?  Thank you Jesus, not at all.  But whatevs.  I figure that in her lifetime, we will revisit her overall diagnosis multiple times and this may very well disappear later.  (Here is a link I found that kind of describes the DBD-NOS.)

So that is how it happened.  I tried to have the "let's prepare ourselves" talk with Kelly before we went in for the final pow-wow session.  But it was not preparation enough as I don't think anything really could have been.  Kelly said, wisely and honestly, "That was a lot harder to hear than I thought it would be."  And it was.  But we also reaffirmed to each other our dedication to love our child fully and accept that God made her perfect, just the way He wanted her.  She is Hayden and we couldn't imagine her any other way.  In our hardest moments and on her most trying days, we struggle with the exasperation and the heartache of, in that moment, wishing she were "normal."  It is gut-wrenching and guilt-encompassing when we do.  But we are not perfect and we can only open ourselves up to allowing God to fill us with His peace and teach us His patience.  She is who she is and we love her exactly that way.

We have learned a wealth of information since last September when our journey began.  And I daresay there's a few more nuggets of knowledge out there that we'll come by.  Not to mention the precarious path of helping Hayden grow up.  A day at a time is all we have and so we'll take it at just that speed.  But we know that we are not alone and we know that we are loved and supported.  And that is what drives us on.  We love you all and hope you're all well.  :)

Sunday, April 17, 2011

New

So, wow.  I haven't blogged in awhile...my bad. :)  Quite a bit has happened since.  The most important thing is that we have moved to Pennsylvania!  Sheesh!  God is good and Kelly was offered a promotion within his company the Thursday before Spring Break, which he accepted.  He is now the General Manager of Hollywood Theaters Crown Center Stadium 14 in Washington, PA.  The company paid for us to travel up to PA from March 22 - 26 in order to find a home.  That wasn't a whole lot of time but God is faithful and we found one!!  We came home and had a whirlwind experience getting packed up and finishing out our last week in Oklahoma but God was in this all the way, and while it happened quickly, it happened so very smoothly.

Our new home is in Houston, PA which is a borough right next door to Chartiers Township and on the other side of the borough of Canonsburg and all of this is in Washington county...now, I'm not sure what all of this means but at least I can find my way to and from our house!  :)  We left Bartlesville and Oklahoma on Saturday, April 2 and arrived in Pennsylvania on Sunday night, April 3.  So we have been residents of the Commonwealth of Pennsylvania for exactly 2 weeks today.  Just to give you a small example of how wonderfully God has provided for us and really fulfilled the promise He made in Jeremiah 29:11, Hayden had ZERO issues traveling here in the car.  She was amazing!

Moreover, while we were here house-hunting, I was able to get in touch with a person from The Arc of Washington, which is an advocacy group that operates locally but is based on a national group.  The person I met from this organization, met me at our hotel and gave me a wealth of information on our new home.  Through her, I was able to connect with a variety of individuals who helped me get Hayden placed and she started school last Monday after only a week of being here!  In PA, there is no Pre-K program but thanks to her IEP she was eligible for Early Intervention services and was able to start a class called LEAP:  "LEAP stands for Learning Experiences: Alternative Program for Preschoolers and Parents. It was founded by Phillip S. Strain, who received a three-year federal grant to create a model program that placed autistic children in a classroom with those who do not have autism."  Interestingly, the guy who created LEAP first tried it out as a preschool program in Pittsburgh in 1981. :)  (Here's a great article on how the classroom works.) She attends school Monday through Thursday from 12:45 to 3:15 and is sooooo happy to be back in school!  Her original love for school from the beginning of the school year has returned!  And she asks for "friends" all the time. :)

Her classroom consists of a teacher, 2 paraprofessionals, 8 neuro-typical kiddos, and 4 kiddos with autism.  Further, the Speech Therapist and Occupational Therapist are on staff at the school and come in and work with whomever needs their services. They have 10 vocabulary words each week and have a "test" on Thursday.  She had her first one last Thursday and she got 9 out of 10!  There is also an art project each week that is meant for the parents to do with their children.  The teacher sends home a template of something and the parents and students decorate it however they want.  Last week, we decorated a template of an Easter egg.  We used markers, stickers, glitter-glue, and crayons.  One last thing on Hayden's schooling:  the elementary school that she will attend next year is literally in our backyard. :)  In fact, on the evenings and weekends, we can walk about 500 yards from our back door and go play on the playground! 

I am so amazed at God's obvious movement in our life...over the past few weeks, in particular.  He is our Rock and our Salvation!  And while moving so very far, so very quickly has been somewhat daunting and a little scary, we know that He is faithful to provide us what we need.  I am excited about this new place.  I am excited about the hope of a fresh beginning.  So often, we wonder if we really are following the path that God laid out for us.  We seek to follow His will and get a little paranoid that we've made a mistake...especially when things go wrong or feel hard.  But in this move, I am assured that this is absolutely right for us.  I am encouraged of this when we have rough days.

So that's the past 2 months in a nutshell. Most of you are on Facebook and if you've been following there, this is old news.  But I wanted to post it here, too, as a record of our new trek in a new place.  We love you all and hope that this Easter, you remember Him who became sin that we may all have new life!

Tuesday, February 22, 2011

Color Me Pink!

I just discovered that Blogger finally added more than just the same, plain-jane fonts to their Design-Your-Blog repertoire!  Being a connoisseur of fine fonts, I decided to re-decorate, as it were. :)  Color Me Pink! :)

The last week and two days has gone swimmingly in the drop-off arena.  I am so happy that we're finally reclaiming our routine and Hayden seems to enjoy going to school once again.  I did read something last night, however, that would require further research and lots of creative solutions.  In Temple Grandin's book, The Way I See It, she mentioned that anxieties for individuals on the spectrum can increase as the person gets older. In an interview with Dr. Tony Attwood, Ms. Grandin was asked where she would spend $10 million for research, either in existing areas or new areas.  As part of her answer, this is what she said:

"...Another really bad thing, especially in the high-functioning end of the spectrum, is that as the people get older, they get more and more anxious.  Even if they take Prozac or something else, they're so anxious, they have a hard time functioning..."

This seems to be happening with our kiddo.  How she reacts when her triggers are pulled has changed as she's grown.  For instance, she never gave a crap about being smeared with food or mildly damp (drool, milk, pee diaper, etc.) as a baby and toddler.  Now, we've reached the level where if her little butt isn't bone-dry after she goes pee, we have to change underwear.  Same thing if she spills juice, milk, water, or food on herself...she MUST change clothes.  She started bringing me the "zizzors" with a shirt and saying, "help."  That meant she wanted me to cut the tag out of the shirt.  Her drop-offs at school have been going well, as I mentioned.  And I think it may have to do with her holding onto her "baby" for a few extra minutes instead of putting it "night, night" in her bag when she first arrives.  She is suspicious of movies when we go to them because she has grown a healthy fear of certain types of animated characters.  I am not sure exactly what seems to be the problem. Big, googly eyes?  Scary voices?  There doesn't seem to be a one-size-fits-all approach...that I can recognize yet, that is.  It is for this reason that her once-beloved Veggie Tales go unwatched and very staunchly ignored.

So I'm trying to use my creativity to practical use and come up with fail-safes to assuage her anxieties over these things.  Lots of hugs.  Keep the baby with her.  Tell her it's OK.  Although, these don't seem too creative. I've also tentatively pushed her to try and accept certain things.  Sometimes it works and sometimes it doesn't.  We took her to see Gnomeo and Juliet on Valentine's Day evening.  She was adamantly against it as we walked in.  She kept repeating, "No cute little gnomes!"  But the trailers of children's movies (like Winnie the Pooh) seemed to ease her into the experience...along with some popcorn :)...and once the movie started, she was fine.  Living this way requires a lot of trial and error and even more patience than I can sometimes muster.  But she is worth it so I charge on.

Well, that's the look of things from our castle, today.  This life is ever-changing and sometimes very hard but God gives us the strength, the patience, the grace to keep at it.  Oh!  And in case you haven't seen it on my Facebook page, I started a photo blog as a project.  It is called Project365 and the point is to take a photo everyday for a year.  Now I really went and complicated this very simple task for myself by pledging to take one photo myself AND make sure that Kiddo takes one with her new camera as well!  So far, we're chugging right along!  There has been a day or two where I've had to play catch-up from the day before but so far, so good!  Check it out HERE if you get a chance!  Lots of love from us today.  Have a great one!

Thursday, February 10, 2011

Oh My!

So Hayden has been expressing quite a large amount of personal independence lately that makes us react in one of two ways:  exasperation/anger or laughter.  Today was a great day for the laughter end of things.

In an effort to clear out our cluttered garage, I decided to finally sift through all the crap and photograph a few things to advertise on Facebook, make a Goodwill pile, and label the boxes of stuff that we're keeping.  To begin, I put the stuff to be photographed in the house while I straightened everything else in the garage.  Some of those things included old car seats and a baby swing.  Among other things, this is what I discovered her doing:

 While in the garage, putting the swing cover in to wash, Hayden decided that she was going to swing...

 While I was at the task of laundering covers of things, I decided to launder the cover of this item...the papasan that Hayden used when she was an infant.  Once it was clean and dry and back on the frame, I let Hayden play with it and this is what she did.

I was so ready to be mad and yell at this but just couldn't maintain it.  Hayden has really taken a liking to our cat.  It's enough of a liking that Leo has decided that the only place he can snooze undisturbed is on top of the entertainment center where Hayden can't reach him to pull him down and give him bear hugs.  But alas, she has discovered a way to trap him...


In addition to her silly shenanigans today, we've had several snow days where we've done some fun things.   Here are a few:

 Fort building...

 Playing in the fort

 Checking out the roof of the fort

 Silly camera antics (that's fodder for a whole 'nother post!)

 LOTS of Facebook... :)

 Kelly making midnite trips to the mailbox in several inches of snow

 Snowpocalypse #1...Feb. 1-4

Sittin' in the snow

After we cleaned off the cars

 Sooo much cooking...this was potato soup w/ Sicilian cheese paninis...was craving McAllister's hardcore and so made my favorite meal of theirs. In addition, over the two weeks, I made white chili, chocolate chip cookies, roast chicken, spaghetti, chicken & noodles, snow ice cream, sandwiches, and other various items that now escape me...

 The panini

 Gooey cheese!

 The soup

 Hayden was having fun with her babies...or putting them in the stocks; one of the two. :)


So there was a small taste of our massive amount of time spent indoors.  We've been to school three times in the past two weeks.  In addition to all of this, we watched the Toy Story trilogy about 8000 times as well as Word World, Elmo, Dora, the Backyardigans and Wonder Pets.  There was also an abundance of coloring...I'll get some pics of that art work and post them sometime but just to give you a perspective, she colored every single page in her Mickey Mouse coloring book.  And she took pictures...lots and lots of pictures.  When I uploaded all of her work to my computer, there were over 300 pictures.  So we bought her this.  I will post some of her photography in yet another post sometime very soon as well as some of our snow shots.  But for now, this is how we spent our time during the double blizzard.  Loves and hugs to you all! :)

Monday, February 7, 2011

R-O-U-T-I-N-E...This Is What It Means To Me

I just need to take a few moments this morning to vent a little of my frustration.  It is aimed at no one.  These lamentations are just parts of our life.  But geez, how it can get so tiresome. 

Hayden started the school year ready to go.  She really, really liked school and we were so excited about it.  She had a paraprofessional that she formed a routine with, a very caring and wonderful set of teachers, and she just enjoyed learning! 

Her para got a new job and so left the school a couple of days before the end of the semester.  Upon returning to school, post-Christmas break, Hayden had a new para and the arduous task of getting back into the swing of things.  The first week back went OK.  There were some bumps but overall, it looked good for Operation Get-Back-On-Track. Then, she got sick. 

First, it was a stomach bug that reared it's ugly head all over our bed in the wee hours of a Sunday morning.  She stayed home that Monday to recoup.  Then, due to snow, school was cancelled on Tuesday.  She was back in school on Wednesday but then developed croup that night (as it somehow ALWAYS happens at night) and was out again on Thursday and Friday--we were in the doctor's office on Friday to avoid any late-night/early-morning E.R. visits.  We got a much-needed nebulizer for times like these and seemed to be on the road to recovery.  But alas, it was not to be.

We had a long weekend (out of school on the 17th for MLK, Jr. Day).  She was back in school on Tuesday, Wednesday, and Thursday, but started running a fever on Thursday night so we were back in the doctor's office on Friday, this time, as it turned out, for strep.  So we were sent home with antibiotics and a prescription for rest.

She was back in school on the 24th, 25th, & 26th (Monday, Tuesday, & Wednesday, respectively) but kept coughing and coughing and were BACK in the doctor's office AGAIN on Thursday, the 27th.  This time, we had a chest x-ray, a nasal sinus x-ray, and a blood test for mono--which tested positive.  And the nasal sinus x-ray showed that she had been suffering from a chronic sinus infection!  We were given even stronger antibiotics and even more instructions to rest.  At this point, I decided that the next week, Hayden would go half-days to help her get well and transition slowly because of all the sickness she had been undergoing.  That, and her days at school had not been very good, partly from missing for this, that, and the other; and partly because she was still getting used to her normal routine and her new para.

So, she went half-day on Monday.  It worked out well and even though drop-off was awful, I felt like the extra rest would really make a difference.  And then it snowed.  It snowed like snow was going out of style.  And we were out not 1, not 2, not 3 but FOUR days.  On one hand, it was great for Hayden to have some time to just relax and play and be at ease to try and get over the mono.  On the other hand, it was setting us up for an even harder journey to get back into a workable, functional, positive, and effective routine.

So here we are on Monday of a brand new week.  A new start.  Drop-off was again, miserable.  I sat in my car and cried and didn't know how to make it any easier or any better.  I went back in and talked to Hayden's SPED teacher to try and understand.  It helped some.  And I feel encouraged that re-establishing a routine will really help and so consistency with our morning routine and drop-off and going to school are very important.

But there are some hazy clouds on the horizon that make me nervous. She had been recovering--cough almost all gone, appetite returning to normal, energy levels back to near-full capacity.  Her follow-up with the doc went well, this last Thursday.  But that very afternoon, energy dropped again.  She ran a low-grade temp on Saturday night/Sunday morning. Her appetite has gone back down some.  Her cough is back, just a little.  Oh, and we're supposed to get 4 -10 more inches of snow tomorrow and Wednesday.  I'm hoping the illness factor is just the mono and that more rest is what we need.  Snow days provide that without me having to keep her home from school but that means that we have to delay a return to routine even more. 

So I am lamenting.  And I'm frustrated.  And while I can adapt and go with the flow on this, Hayden cannot.  So my prayer is that somehow, our routine can get back on track and soon. I also pray that Hayden would stop getting sick!  We could really use your prayers, too.  We love you all and hope that you're all staying warm and cozy during this crazy winter!  Much love and thanks for reading.