Wonderful Weekend

This weekend has been delightful.  Nice and relaxing.  D1 had a sleepover Friday night and D2 was thrilled to have us all to herself.  I think it was a bit overwhelming for her though, she was so torn with all the wonderful things she wanted to do, but our time was limited and the clock didn't slow down at all.

Saturday was nice.  We each enjoyed doing things together and separately.  For a bit D1 was designing clothes on the computer, D2 was watching a movie, husband was working on school work, and I was milling about with this and that, interrupting husband with my thoughts on the world.  Which alway intrigue him. ;-)

That afternoon we sat down to a great game of Clue.  I love this game.  My family likes it, but they don't like how competitive I am.  I can't help it, I just love these type of logic puzzle games.  D2 was really getting into the game and was Sooooo close to making her accusation when the die was 1 number shy of letting her into a room.  D1 had complained how much she didn't like the game, how bored she was, how it was sooooo hard.  She then goes into a room, and makes an accusation and was right.  Game over.  The look on D2's face was crushing.  She was working so hard to put her clues together and then her sister swept the rug from under her.  Oh well.

We played 2 games of clue and then each took some time to read, play legos, do art, or whatever we wanted.  My friend Tammy showed me this great puzzle called 100 alligators and a purse.  There are all different ones, but the one I have is 100 Mice and a Piece of Cheese.  It's a pretty fun Puzzle and has been taking up space on our dining room table since Christmas.  By the end of the day, all four of us were rather intense working on this puzzletill after 9pm.  It was the highlight of the day.  NO technology required.  Well, there was the iPod playing, but other than that.... After the girls were in bed, Husband and I continued until it was finished.  I loved that time with him.

Today we continue on.  Some are working on puzzles, reading, and creating.  The plan is to continue to relax today.  Gearing up for a very busy week ahead.  The weather outside is freezing and the house is working hard to keep us warm.  I ventured to Wal-Mart and purchased some electric blankets on clearance and so we are all snuggled and relaxing.

I just heard the TV come on and it kind of makes me sad.  Oh well.  It was bound to happen.  Besides football starts soon, and we'll all be plopped in front to the TV then anyway.  Except for D1, she's not a fan.

I loved our "unplugged" weekend.  Playing games, reading, creating, and best of all communicating.  No stress of the Monday thru Friday things that eat away at our souls.

How was your weekend?

Happy New Year.. time to kick it all in gear

Welcome 2011!

This will be a year of discovery and lots of education.
On Dec 15th we learned that D2 has a diagnoses of ADHD, Asperger's, and Anxiety.

Deep breath.

At first I was relieved.  I felt validated as a mother.  That I KNEW my child.  I knew that she was dealing with more than just the ADHD.  I knew that there was something that made up all the things that the ADHD didn't cover.

I learned that there were things that she was doing at earlier ages, that I just didn't put together with Autism.  Now we look back and have many "ah-ha" moments.  Moments that all of a sudden make sense.  Daily things that seem crazy - now seem normal when we look through the Autism lens.

After my relief, I then felt horribly sad.  Sad that things were so hard for her.  Sad that I had missed so many clues.  Sad that I pushed the "suck it up & toughen up" attitude on what seemed like little things.  I even went so far as to think this was somehow all my fault.  That D2 having ADHD & Autism was because of me.

Her matter of fact attitude.  Her sensitivity to sounds and smells.  Her blunt comments.  Her struggles with writing and her lack of letter structure.  Her lack of friends.  Withdrawing from crowds, obsessing about the rules, routines, and her crazy desire to please everyone.  It all makes sense now.

I'm doing much better now.  Well, today.  Two days ago I was a mess.  Trying to understand, trying to learn how to be the mother she needs me to be.  Trying to help her sister understand and stop annoying her just for fun.  Then there is Husband.  The most amazing man in my world.  How do I be a mother to D1, D2, and a good wife to him?

Did you know that 80% of parents with special needs children divorce!  WHAT???  That is crazy.  I understand it though.  Every single bit of research that I do says "be sure to take care of yourself", "take care of your spouse", "take a time out, grown up time".  I know all these things and have encouraged many moms to do the same.  How did I forget that?  Everything I read is about ADHD and ASD.  I am even reading a fiction book... about a boy with ASD.  Okay - so that doesn't count.  I get on the computer and google about D2's Dx.  I check my facebook and look for others going through the same things I am.

I have learned that being the mom of a special needs child can be very lonely at times.

Since D2 is medicated during the day for the ADHD, the teachers get the best of her.  They get her controlled and focused.  They think I am a loon when I express my concerns.  As I have blogged before she is a different child in the mornings and evenings than she is during the day.  I have also learned that other children with ASD become very good at "holding it together" through out the day and when they get home, in an environment that they feel safe, they let it all go.  That is when the tantrums, hitting, yelling, and all the things that no one likes to talk about - THAT is when all those things happen.  That is when life is the loneliest.

Through this new land, I remind myself that I was chosen.  I was chosen from all the other moms in the world to be her mother.  She was chosen for me.  A wise woman told me yesterday... I need to remember to thank God for her being in my life.  I am embarrassed to say I needed to be reminded.  Not that I ever wished other wise, but it gives me a new perspective.  I must admit though, many of my prayers have been along the lines of "how in the world do I be a good mother to her".  She deserves so much, and I pray that I can be enough to give her all she needs.

the first decade

Today D1 is turning 10.

The BIG 1-0. 

The "first Decade down" is what she said today as she was scarfing down her lucky charms.

I watched her carefully plan out what she was wearing, how she was wearing it, and the hair that had to be just so to go with the just so outfit.  

10

Where did those 10 years go?  Seems like just a few days ago Husband and I were counting contractions, speaking our best medical Italian, and waiting an eternity for her arrival.  

Husband and I were stationed at Ghedi Air Base in Northern Italy.  It was a beautiful area and since we were stationed at an Italian base, we lived completely on the economy.  No base doctors and hospitals for us.  Our OB/GYN was Italian and we were told she spoke great English.  Hmmm.  Great english compared to someone who didn't know any English... maybe.  When we left her office, I wasn't sure I knew English.  My Italian did improve rather quickly though.  

D1 came into the world healthy, beautiful, and with a head full of curly hair.  She was perfect.  She arrived without any birthing classes, practiced breathing, birth plans, parents around us, and all the things we as Americans obsess about.  The plan was - "the baby come out".  I had to trust.  I had to have faith that I was right where God wanted us to be, right where he wanted D1 to be born.  His timing was perfect.  My mom and Husbands parents had plans to arrive soon after her birth, so I knew extra hands and love were on the way.  

Unlike America, a natural birth allows you to remain in the hospital for a week!!  We were so blessed to have the sterile hospital, nurses on hand to help with nursing, and nothing to worry about but the three of us.  I especially liked the hot tea served every day at 3pm.  Yum. 

I couldn't stop staring at this beautiful lil baby.  So precious, so innocent, untainted from the world and all it pollutes our lives with.  I wanted to retreat to a place where there was no one else but the three of us.  

I still watch her sleep.  She is still my little girl.  All snuggled up with her Felicity doll, her Lamb, and her blankie.  Her sweet cheeks that she inherited from Husband's family, her pursed lips, and her long curly locks of hair.  I fall more in love with her every time I stop and stare.  

She is brilliant.  Straight A's.  Gifted.  Talented.  A wonderful singer, pianist, artist, friend.  She has so much going for her.  I pray that her life continues to go well.  That she will see her options are unlimited.  She can do anything that she sets her mind to do.  I pray that life affords her every opportunity to explore and discover what her purpose is.  I find her to be amazing.  

The first 10 years have gone by so fast.  She has grown from my baby to my young lady.  

The second 10 years I hope slow down.  I want to enjoy my young lady and be sure the transition to a young woman is a smooth one.

I am always amazed how much I love her. The ability to love her with every ounce of myself.  A love so deep and powerful, that no one could ever EVER break that bond.  A love so strong that I tear up just thinking about it.

Happy Birthday my angel.  

so numb it hurts

waiting.
who likes it?
anyone?

I don't.  I hate to wait.  Even more, I hate uncertainty.  Waiting with uncertainty... yep, that about does me in.  Uncertainty makes me crazy.

D2 had all her testing done last week.  A week ago today in fact.  We were scheduled to get the results of that testing on Thursday the 9th.  It has been a LONG week.  Since D2 was unmedicated for 24 hours on the 30th, nothing has been the same.  We thought that the medication was not having much of an effect on her, but when we had taken her off the medication we saw just how much the medication was doing for her.  YIKES!!  We had no idea how good we had things.  Off meds D2 became a child I could hardly recognize.  Loud, repeditive, angry, defiant, and unaffectionate.

She began taking her meds again the next day and was so calm it was scary.  Then on Thursday she was back to "normal" except now when her meds are wearing off about 6pm, life becomes very intense.  If one thing is out of place, different, or changes....the world comes crashing down around you before you even know what happened.  This is especially delightful when in public and with people who don't have an understanding of there being a problem.

Saturday night we went out to eat at Cracker Barrel.  Things were going well until the food came out.  Typically food comes in separate dishes.  Not this time.  D2's mashed potatoes were touching her chicken strips.  Thinking fast, I asked the waitress for a bowl.  We then scraped the taters into the bowl.  Problem solved right?  Wrong.  See, NORMALLY the taters are in the shape of the scoop, since we did the scraping, they were dry and falling apart.  Huge break down.  For a normal child this would be just silly - for D2 this is earth shattering.  Judgement was instantly upon us.  Then spinning us into an evening excusing our selves from the table and having a "come to Jesus meeting" every time we did.

Our evenings are spent this way more and more.  Each one becoming more tiresome then the next.  I was really looking forward to this Thursday's appointment.  I know that what ever we learn about the results on D2 will not instantly fix everything.  I know that it wont be this huge magical moment that will make all the hurt go away.  What it WILL do is validate me as a mom.  Give me a place to start.  Telling me she has "abc syndrome" will then give me a ground zero.  I can begin to research what to do, how to help her function.  How to return our home to some state of normal.  Not that our home life will be normal, but being informed about what is going on and what to do, will help us to structure our lives and establish a new kind of normal.

Hmm, Saying that reminds me of my friends book "Some Kind of Normal".  It's about a mother and her journey as she discovers her daughter is diabetic.  Summing that story in one sentence doesn't give the praise that book deserves, but I know Heidi will forgive me.  See in that story the mom goes through this crazy whirlwind of emotions.  Many of which I am finding myself in the midst of.  She learned a lot about herself.  He strengths and her weaknesses.  Her friends, her marriage, her son, and her faith.  I felt a connection with this book when I read it last May.  Now I recall things from that book that I relate to even more.  To look at the book, you may think "oh it's about diabetics, I can't relate".  Shame on you. If you are human, a mother, and have any compassion - you will like this book.  Okay, enough on that.

Yesterday afternoon the doctor called and said we needed to reschedule D2's appointment.  The first thing I felt were my eyes welling up and the urge to vomit.  RESCHEDULE?  She said some company line thing about wanting to be sure to have a comprehensive report..blah, blah, blah, I don't even know.  Her next available was Tuesday which wouldn't work b/c it's D1's birthday and she needs to have her day NOT be about her sister.  So we had to go with Wednesday afternoon.  I told the doctor "we're struggling here!"  Her reply was that it was just a few more days.  Sure for her!  She's young, single, and not dealing with the day to day anguish that I am.

I hung up.  I cried out.  I cried like someone had just ripped out my heart.  I called out.

Another week.  NOT a few days, another WEEK!

I am growing numb.  I wake up my love in the morning, to be greeted by yelling and arguments.  I put on my tough face, my tough love voice, and deal.  Then when I turn around I see D1 doing everything she is supposed to do without being told.  Looking at me with a smile and seeking my approval.  I praise her, only to hear the screams from the other room of how much better D1 is than D2.  The comparison.  I start to praise and talk to D1 in private, in a lower voice.  Just to avoid the conflict.  Meanwhile deepening the conflict that stirs within me.  This bi-polar approach I have to take to mothering.  It's tough feeling like two people.  Tiresome.  By bed time I have nothing left.  Nothing left for my man who I adore.  Nothing left for my marriage.

Just numb.

I crawl into bed to sleep in 1-2 hour increments.  To wake to the alarm and do it all over again.  In the hours that they are at school, I try to maintain life.  Volunteering at the school, being a good friend to others, cleaning the house, and the daily tasks that come with being a mom.  All of which I seem to be failing miserably.  But to avoid the feeling of failure, the hope of an answer, the loneliness, I become numb.

Without numbness there are tears, when those tears are released there is the realization of anguish.  I know that my JOY is right around the corner.  I know because there is this other great book - the bible - that tells me so.  In fact I recently attended a conference that was all about my anguish and how it will turn to joy.  How at times this anguish can even coexist with Joy.  I'll share that in my next post.  Since I am on Husbands laptop, he probably wouldn't appreciate all the tears clogging up his keyboard.  For now I will sip my Caramel Brulee' Latte, take deep breaths, and psych myself up to volunteer at school today.

words...

I need words
As wide as sky
I need a language large as
This longing inside
And I need a voice
Bigger than mine
And I need a song to sing you
That I've yet to find
I need you, oh
I need you
I need you, oh
I need you
To be here now
To be here now
To hear me now
To hear me now



~ David Crowder Band.  Song posted to the right.

I'm a sucked up juice box.

These last few weeks have been rather tough.  In fact I think it safe to say that these last few days in particular have downright stunk.  Just when you think you have moved forward and have your head wrapped around things - BOOM - you wonder if you moved forward at all.  So you took 3 steps forward - you just stepped into a new room filled with confusion and chaos.

D2 has a diagnosis of ADHD.  Okay - got that.  We have been seeing the therapist, psychiatrist, medicating... but what happens when suddenly that isn't enough?  What happens when she isn't in the bounds of ADHD but instead you start seeing signs of something more?  You put on your big girl panties and adapt - increase meds and move on.  Right?  Then just when you think you have things underway another BOOM.  Now everything you have exausted yourself doing isn't enough anymore and you are left feeling like an empty juice box. All sucked up and crumbled on the floor with nothing left to give but this heaving, pathetic burst of air when someone tries to squeeze a little more.

Yup.  That's me.  Crumbled up with people still squeezing me and expecting what? I don't know.

Everyone is as perplexed as I about D2.  No, I take that back - I am still more confused and concerned.  I get brief updates from teachers and those in D2's life.  "What's going on?, What can I do?  Why is she...?"  I look at them helpless and say "I don't know."

I found myself apologizing.
I'm sorry she isn't being still.  I'm sorry she flips out when there are too many people in her space.  I'm sorry that she is getting "very active".
Then I wanted to smack myself.  The only thing to be sorry about is that I am spinning in circles looking for information and am on the slow boat to getting them.  I am doing the best that a mom can do.  Short of kidnapping the 'experts' and holding them hostage in my house until we have some answers and I have some direction.

I used to hate labels.  But today I long for one.  One that encompasses all the things that are going on for D2.  One that will force the hands of others to help her be in an environment that will help her to thrive.

It's a tough road.  Daily I wake up with my mind racing about the events ahead, does she know them, am I prepared for every possibility, is she?  From 6:30 to 7:30 we struggle with things that should be as routine as breathing.  Get up, brush hair, teeth, get dressed, eat, take pill, get to the bus... and try not to absolutely hate each other in the process.  Most mornings I am numb when the girls get on the bus.  Then I go about the day just to gear myself up for the afternoon and evening.  Homework is often torture.  Not because of the work, because of the effort required to complete the work.

D2 has been referred to a Psychologist for a full evaluation.  Today was my appointment with the Dr. to talk about D2 and all she has going on with her.  I spoke, the Dr asked some tough questions, and I left there with a mountain of paperwork.

Behavior assessment scales, Asperger scales, Autism rating scales, and 2 more behavior scales.  There are papers for the teachers, and for D2 to answer about herself.  Tough stuff.

The toughest part about this road we are on is the judgement.  Some friends and family are very understanding and supportive.  Others say nothing aloud, but their body language is loud and clear.  I have to remind myself that NO one knows what it's like to be D2's mother & father better than D2's mother and father.

In 3 weeks, D2 will undergo a full battery of tests.  In 5 weeks we will have answers to those tests.  Today and tomorrow, I will remind myself to breathe.  And to those that choose to judge anyway - well, my Christmas card list will just be a little shorter this year.

Made for me...

I am in need of a new purse.  I am not a huge Vera Bradley fan, but occasionally there is a pattern that really jumps out and grabs me.  Fortunately I have a birthday just around the corner and so I have sent Husband some subtle clues.  You know, the kind where you call him and say - look at this web site, see that pattern, yep, gotta have it.  

What do you think?  Think this pattern looks like it may just be perfect?