The down side

Last week we went on a family vacation with very close friends of ours.  The are the kind of friends that only exist on sitcoms.  Where the husbands, wives, and children all get along with each other.  Really get along.  We are the next best thing to family.  Given some of our family experiences, I could say better than family.  There is no judgement, only love and understanding.  Neither of us have the answers to all life's problems and neither of us pretend that we do.  It' truly a Divine friendship that began over 10 years ago in a small town in Italy. 

So what is the down side I am referring to?  Well, not the friends, not the children, but the fact that my daughter has Asperger's and all the things that define her as an Aspie were in our face all week long.  There were many variables that contributed to the increased struggles.  Change of routine, well more aptly a lack of routine, and constant social interactions.  D1 and our friends two daughters are like the three stooges.  They play together very well.  D1 takes charge and they follow her like little lemmings.  They will play together for hours, something that D2 is incapable of doing.  There were many times when D2 would become overwhelmed and just leave the situation upset. Sometimes she would stay and argue.  D1 knows how this works, she is used to her sister and knows her struggles, but this week she seemed to have forgotten all those things.  I constantly heard complaints about D2.  "When she doesn't get her way she leaves".  "I was kidding and she got all mad".  "She said I was making mean faces but I wasn't".  "She always has to sit on the end and have her own space".

This made me realize just how much she struggles socially.  If there was ever any doubt about the need for therapy in her life - last week cured all those doubts.  I found myself constantly in a state of apologizing.  Adding to my feeling of failure as her mother.  Then the biggest moment - the most piercing comment "I know that D2 has somethings going on with her, but I just wish she could be normal so everyone would stop fighting."  Wow.  This lil angel did not intend her words to be mean or hurtful  They were exactly how she felt.  How many of us felt at any given moment, but wouldn't dare speak out loud.  Just hearing these words through her tears made my heart stop, my through tighten, and at that moment I couldn't breathe.  I wanted to scream out "I wish she could be normal too!"  "I wish that little things like personal space, and flexibility, and food, and bowel movements were not issues."  Instead, I left the room.  I had to remove myself as far away as I could.  I wanted to leave the house and just walk until I was too tired to walk anymore.  I made it to the top deck of the beach house and curled up in a chair and sobbed.  I sobbed like a small child, crying out to God asking why it had to be so hard.  Why did it have to hurt so much to have a child who to those who don't understand seems like a spoiled brat.  This child who is amazing in so many ways has to struggle with such simple things that come naturally to her peers.  I felt ungrateful.  I know that there are children on the Autism Spectrum that are not as high functioning as D2, parents who have children with disabilities far worse, and knew that God had chosen just the right parents for them.  I had to believe that God also chose Husband and I for D2.  And she for us.  It was at this moment I think I finally grieved the loss of the perfect dream that every mother has for her children.  It was at this moment I came face to face with the reality that D2 was indeed on the Spectrum.  Not just in all the quirky funny ways, and all the positives, but that there were real issues there, real struggles, and real consequences. 

Later that night D2 was again in a situation where everyone was upset and frustrated with her.  She was so overwhelmed and frustrated with herself, she had gone into a full fit.  Hitting herself, growling, and pulling away from everyone.  She finally broke from anger  to crying and said "it's nice that I am so super smart and good at math, but I just wish my friends could get me.  I wish people other than you and dad could really get me." 

My heat broke.  Again I felt overwhelmed and thoughts of losing friends because they couldn't handle D2 crept into my mind.  Who would love her if something happened to Husband and I?  Would someone be willing to raise her, to take her and her issues on? Or would she be left on her own?  Will she learn the skills she needs to be independent and successful?  Will she fall  to the statistic of Aspies that earn high level degrees but because of the lack of social skills can never get past the interview?  Will others see the magnificent potential in her that Husband and I see?  My heart breaks for my little love.

The week came to a bitter sweet end.  Our friends are still our friends, and even answered the phone when I called.  The truly are a blessing to us, and D2 is just wild about them.

I know that I can only take one day at a time.  To live each moment in the fullest.  To let the simple giggles and moments when I watch her and fall even deeper in love with her - be the moments that I focus on.  To let those moments creep in when the world seems alone and without hope.  I used to judge people who would talk about the "sucky side of Autism" and would focus on all the bright spots, and little quirks that were manageable.  The truth is there are times when Autism stinks big ones, but D2 is not defined by her diagnosis, She is much much more.  Her diagnosis is only a part of who she is - a part that we are learning about, and learning how to cope with, and adapt to.  People tell me that D2 is so lucky to have a mom like me... truth is, I am the lucky one.  I am humbled by her unconditional love and I pray that she will know that same love 10 fold.

Where I have been...

Just a taste of the 1200+ photos taken while we enjoyed our spring break at the Outer Banks.

Roanoke Island.. Amazing to stand where the first settlers landed...

more by me...

Cherry Blossoms

On Friday and friend and I took a field trip to the Tidal Basin for some photo therapy.  The sun was shining beautifully and the blossoms were just beginning to bloom.  The weather was cold and windy, but my heart was warm and fuzzy!  This was one of those days that I just didn't want to end.

I'll post more pictures later. This is a very busy weekend for our family, so my time is limited.  Besides, this way I can prolong the pleasures of this day all week long.

recharge before use...

Today I looked at my iPhone and it let me know that I needed to charge the battery.  I was thinking - how wise that this device reminds us when it needs to be charged.  How much wiser that it knows when it's battery is running low.  If only I was that wise.

By the time I recognize I am low on power (patience) the world is already spinning out of control and I am completely empty.  If only I could just say "I'm sorry, but before you press any of my buttons today, you will need to let me sit on the counter and recharge my battery."

AND - people would recognize this and say "oh, the mommy is recharging, we have to wait a bit before we suck the life out of her again"

The problem with a low battery is that we don't preform our best.  We lose perspective on what the real issues are.

D1, my 10 yr old is wearing me down.  The last 2 weeks she has mouthed off, 'forgot' to do important things, and is yelling ridiculous things at me.  She seriously has lost her mind.  Add on the school issues with D2 - and you have a recipe for disaster.  D2 spins out of control at times, and  you think she's just wound up.... but then issues get worse and before you know it you are thinking "what is wrong with this child!?! Why is she doing this?"  Then a little voice hits you in the head and says "she has Asperger's you nub!! she can't really help it!"

I think we get so caught up in shining the positive light on disabilities, that we forget the reality of the not so positive sides.  Today's topic being bowel movements.  There is a relation between the two.  I thought it was silly before the Dr pointed it out to me.  Not all - but there is a connection and it is not uncommon for children with Aspergers to not have bowl movements.  Understand, I am not complaining about skipping a day.  Not even skipping 2 days. I am talking about going a week or more.  Dangerous levels of not going.  Why?  Just because she doesn't like to.  In fact she hates going.  The docs tell me it is a sensory thing.

Regardless, here we are in the battle of poo.  I accept the blame.  I try to stay on top of things - seeing that she TRY to go every other day.  We have sticker charts, and rewards, and the whole sha-bang-bang for rewards.  I do well for a while and before you know it, life takes over and it's been a week or more and she hasn't gone.  I know the signs that she has to go.  Rocking, can't sit on hard surfaces, not eating, hiding her underwear, not sleeping well...But when all these signs show - it's too late, we are in for the long haul and the battle of the wills.  This struggle, on top of an already emotional week, becomes the moment my battery light flashes and says - "you should have recharged me!!  I'm shutting down"

I am thankful for Husband.  He had to step in b/c I stepped off.  Most mothers fear their child will die from a stranger, or an accident, I fear my child will die because her bowels will erupt.  You just can't make a child poop.  Sure you can make them sit there, but you can't push for them.  I give her laxatives, but she holds it in still.  It is an exhausting battle.  One that I have to just start over with a new day and do a better job of seeing that she tries every day.

I have to remember that she is a child with Aspergers and with that comes some amazing qualities, but there are also some things that we just have to push though and get creative with.

Most of all, like all moms, I need to do a better job of reading my battery meter.  When that sucker starts running low - I need to plug in to a rechargeable source.

Sunshine and lollipops

Today is a BEAUTIFUL day!
This morning I sent husband off to work on his motorcycle and then got ready to take on the day.  Since the weather is supposed to peek above 70, I thought capri's were in order.  I couldn't find my old faithful denim ones, so I kept digging when I found a pair that hadn't fit in 2 years.  I thought about trying them on, but then thought, "why depress myself before 7am?"  I had decided on pants, which was depressing so I threw caution to the wind and tried on the long lost capris.  The last time I tried them on (august) the buttons couldn't even see each other, forget coming together.  Today was different... they went on with ease!!!  WaHOOOOO!  Rock star moment.  Hips and butt are down a few inches, tummy is still all over, but hey - it's a start.

The girls woke up happy and content - looking forward to the Jump-a-thon at school.  I totally dropped the ball there, but the important thing is that they will still be there to jump their lil hearts out and have fun in the sun.

It had been a while since I escaped to the coffee place to relax and enjoy so after dropping the girls off I thought I would head that way.  I ordered a springy iced tea, and found a table that was free.  It wasn't my "usual" spot, but it'll do.  Just as I got set up, I realized there was no way I could focus or relax.  The amount of LOUD chitter chatter was overwhelming.  SO, I made my way outside.  The breeze is a bit much, but I am loving this sunshine.

I love spring and fall.  They both excite me.  In the fall it's a fresh start with school and new suplies and getting organized with schedules and new routines.  Spring is the anticipation of everything new.  New buds on the trees, fresh air, new flip flops and fresh toe nail color.  We shed off the stink of winter and cabin fever and press on face towards the sun soaking in all the vitamin D we can.

The In-laws are coming tomorrow and there is work to be done to prepare, but who could stay home in side with all this yummy weather!!!  I'll be sure to slip home mid day and wash the sheets and accomplish a few things before the kids get home, but then their lil booty will be outside, riding bikes and whatever else they can do before the day is through.

Spring is appropriately named, don't you think?  The weather alone puts a pep in your step and a smile on your face.

Is old school Bad school?

I love technology.
I support and advocate for technology in the schools.  My children have their own computer and we encourage them to do more than just play games and shop.  We teach them how to use different systems and be creative.

Okay - so that's my disclaimer.

My concern is this... Are we going to far?

A few nights ago my 10yr old was complaining that her sister was taking too long on the computer and I wouldn't let her use mine.  She said she could not complete her homework because she NEEDED the computer.  I asked what she had to do on the computer and her answer made me laugh.

"Mom, I have to figure out the definitions for these words!"  I suggested she use a dictionary and she looked at me like I had lost my mind.

"You are not serious!"
"yes, yes I am. We have two dictionaries in the office, go get one and look the words up."

"MOM - that is crazy! I can just type the words on the computer and it will tell me the definition. It will take me forever to look up ALL these words!"  (she had 7 words to define)

This conversation went on and on then..

"MOM, (said with the desperation of speaking to a crazy person) in the future there won't even BE dictionaries! I'll just talk to the computer and it will tell me the definition."

At this point I am laughing and talking with a friend who in unison we say "when we were 10 the future held flying cars and you wouldn't have to cook dinner, you would swallow a pill that had all you needed"

I of course followed with "but here I am driving on 4 wheels and cooking your dinner.  The future isn't as close as you would like - look up the words and while you're looking you may discover a new word."

Shaking her head and waving her hands lugging the giant, dusty, dictionary she says"I don't know why you are making me do this - did you go to school with this Webster guy or something?"  Buy this point the conversation had gone so far, I couldn't even take her seriously.

Remember when.... You were told how to treat a book.  Don't crack the spine! Don't fold the pages!  Be careful where you keep your books.  Don't eat while you read, you'll mess the pages.  The thrill of getting a new book.  The smell.  The crackle of opening the cover. The adventure that awaited you on the pages.  The respect.  If you had a question - you went to a book.  Remember Encyclopedias?

Yes, computers have made life easier - especially if you have a Mac. (sorry, selfish plug) Very few own encyclopedias.  We don't.  The internet is an instant resource at your fingertips.  However, our children are still tested to know what a Dictionary, Thesaurus, and an Encyclopedia are.  The test that they take on... a computer.

This year our school will be taking the Standards of Learning tests on the computer.  Computers that fail to work half the time. (PC's of course).  In order to practice these test taking skills, they take their subject tests on the computers.  It's nice that the teachers get instant results.  They no longer have to lug home stacks of papers to grade.

What concerns me is how do our children learn from their mistakes?  Remember taking a test, and when you got your test back, you had to look through to see which items you answered incorrectly?  What was the purpose in that? To learn from your mistakes.  Now my girls bring home a form that says D2 scored a "B" on the Economics test.  When D2 is asked "What kind of questions did you miss?"  She has no idea.

Your child bombs a math test with greater than & less than.  Since the teacher sees the raw score - they don't see that Susie got the symbols confused.  That Johnny transposed the numbers.  All Johnny and Susie know is that they bombed the test.  They don't know why.

Last night I reviewed D1's Math homework.  She made silly mistakes.  Here is a child who is tested as brilliant, years above grade level, gifted, and is bored in school.  She blows through her work b/c "it's easy".  Funny thing is, in her boredom, she makes careless mistakes.  9-3=2... um no.  She doesn't take the time to check her work.  When she gets her paper back and has a 'B', she is okay with that because a 'B' isn't bad.  Daddy and I are unreasonable because we give her that "seriously? you got a B on this" look.  We don't expect straight A's.  However, when she gets that 'B' because she forgot to carry the one, or answer the question all together... yeah, Momma has a problem with that.

This morning I explained to D1, I don't want her to ever just settle.  So she got a B when she could have easily pulled off an A.  I told her that all those B's would amount to a solid B on her report card and she said "a B isn't bad mom".  Sorry kiddo, it is when you earned that B because your being lazy.  Maybe I was extreme, but I went on to say how settling for a grade would lead to a life of settling.  So you settle for a lower grade then you are capable of.. do you then settle for friends, settle for a husband, settle for a job, settle for a life style.  When you have amazing potential... do you settle for less?

Learning from mistakes.  Doing the work.  Going the extra distance.  Asking questions.  Taking time to search for answers.  Not just settling.  Are these all things of the past.  Or I am just part of a generation now that looks at young children and complains about how easy they have it compared to when we were young?  I know we didn't have it as bad as our elders... but to completely toss aside life looking for the easy path and working so hard to resist other avenues... seems foolish.

I love technology.  But when it replaces fundamentals?  I love my dishwasher, but when it's broken or I live in a country without one, I still know how to wash the dishes.

I love that my children know how to use the computer to learn what they need to know, but I don't think it is absurd to expect them to know how to open a book and learn the knowledge they seek.

(stepping off soapbox)