Friday, July 27, 2012

In Our Shoes - P.S.

I had to clarify this morning's post for a friend...I am hurting about Elise's current status less for myself, and more that my baby is aware and not able to "speak" for hurts me to see her hurt.

When she was little, she was a pixie.  When she was a toddler, she was so effusive that her smile brought one to others.  Now, there is obviously something "wrong" and now we get the questioning stares, the judging looks, the pity, and the disregard.  I am a big girl.  I have lived a lot of life in my years.  I don't care for me, what those looks are...I care for my girl and her heart.

When we are home, I feel it less.  But with everyday that passes with her sisters, I am seeing more questions and sadness in my Littles...and fleeting moments of *not normal* hit...

But when I am with her alone, I see only her brilliant smiles, I hear only her giggles of joy, I feel all of her emotions with and even without verbal response.

I drove up to my parents this afternoon, and mulled some of the responses of my friends in my mind...and this song came on the radio...and felt that it needed to be my P.S.  It said almost all that needed to be said...

"Chasing Cars" by Snow Patrol

In Our Shoes - What do you accept?

This may be a melancholy post for some.  But I am genuinely asking this question of those with older/adult children...

"At what point do you make peace with the idea that it's not 'going to be okay'...and that despite the highest of expectations and the most extraordinary educational opportunities, your child will not wow the world. At what point do you accept that your child will change you, and that's it?"

Elise will be 10 in a few short months.  As I mentioned HERE and HERE I expected and expected and expected....and I do not see the open field of opportunities that I had seen for my daughter when she was 2.  I just don't.

I was told after she finished treatment for her leukemia that there would probably be some mental retardation as a consequence of the chemo.  But when your child already has mental retardation thanks to a disability, there is no way of knowing what effect it had on her.

Plus, the range of IQ is huge in people with Down Syndrome.  There are high functioning people with it, and there are low functioning people with it.  And it all does not come down to their parents expectations and the opportunities given them...not all of it.

This question comes up because of several things...many, if not most, of the people I know with kids with Downs have little ones...they are under 5.  And they are still writing, arguing, and fighting the school system for opportunities that are limitless.  They are still following the Einstein Syndrome model and are still fighting the world at large for the same view of their baby.  And don't get me wrong, that is a good thing!  But there will come a day for all of us parents with kids with special needs (really, ALL parents, right??)  where you will have to take stock and meet your child where they are.

Also, I am seeing Elise shut out in our own home because she cannot play or communicate.  The little girls are playing house, dolls, concerts, dances, plays, and animals...and Elise can't.  She is becoming aware of this, I think.  She used to try harder.  Now she only attempts to join them 50% of the time....if that.  I encourage her and them to play things they can all play, but even mama cannot fix this one all the time.

The inability to communicate especially hit me this summer and Elise is now getting private speech therapy that is specifically targeting the social communication with peers.  I am pursuing a speech device, I have left whole hosts of messages with the specialist down at the hospital...and as each week passes, I question if they have any intention of calling me back.  It will be a big surprise when I show up on their doorstep if I don't hear back...don't think that won't happen, okay??

The depth of the lack of communication hit me pretty heavily last week.  Elise went to her beloved hippotherapy.  And had a kitten.  She took off her shoes, threw them at the therapists, let all the horses out of their stalls, and cried in the dirt.  At first I was in a state of utter disbelief...then when she volunteered to go home and take a nap, I realized that there was something else going on.  To make sure that it wasn't a well-organized attempt at escape from work (which I would never put past her!), we made her go back in for another 30 minutes and work on physical exercises.  She had to "be" the wheelbarrow to work her arms, and then she asked to do the climbing wall...something, she's wanted to do since they installed the wall...and she worked hard, in her crocs.  Which brought to mind a total nervous breakdown she had when she was 2 and it turned out her shoes were too small...Which caused me to be suspicious of her shoes.  So, on the way home, I took her by a couple of shoe stores.  Not surprisingly, she had outgrown her shoes.  She went to therapy in a size 13 and we bought a size 2 (for those of you who aren't properly impressed, that's 2 full sizes).  And lest you respond, "Well, brands vary..."  it was the same brand (there are only so many that fit her).

It brought me low.  My child cannot even tell me that her feet hurt.  That her shoes don't fit.

THIS article was shared with me this week.  And to be honest, it was a bit of a kick in the teeth.  Until I read it again.  The mother is discussing her preschool son.  I used to love reading articles like that one, and ones like THESE...  They inspired me.  Nowadays, they just remind me how very far from that Elise is...and as the years pass, I wonder if that will ever be her future.

Now, please hear me.  I am not giving up on my daughter.  I am not.  Everything may finally *click* and fall into place.  As everyone constantly assures me it will.  And I still want from her, her best.  But I also need to start being realistic.  She may not be "high functioning".  She may not be able to "change her stars".  She may not ever have the friendships and relationships I had hoped for her.  She may find solace in movies and petting her cat.  She may not be able to ever follow the rules in a game enough to play a typical sport.  She may never be able to attend a party without me playing interference.  She may never be able to stay home alone.  She may never hold a job that inspires the parents of children with disabilities with hope for their future.

And I need to be okay with that.  More than that, I need to glory in it.  This is a child that we have almost lost 3 times.  This is a child that we have fought for medically over and over and over just to have with us.  I have no personal space anymore.  She lives in it.  I have to beg to go to the restroom alone.  It is exhausting.  But she loves hard and rejoices brightly.  She has changed me in so many ways.  She has refurbished my life and my perspectives.  She does a happy dance over the littlest things.  And I do too, now.  And that needs to be enough.

Thursday, July 12, 2012

Summer Livin'...

...Is not so easy.

Elise thrives on scheduling.  Which I really like, myself...most of the time...but not like Elise loves it.  Elise loves school and spent 3 weeks asking to go back. I felt a little badly, that she couldn't go hang with her friends...but a smidge hurt that she didn't enjoy vacation with me...

I keep wanting to do another Esther serial.  Car Etiquette.  Because, wow, do we need it!  But every time I turn my back on her, Elise is dumping stuff out, eating hand-over-fist out of the pantry, or smacking her sisters.  And so, unless I do it at night, which makes for some bad lighting, it's not going to happen until school starts back.  And so I sew and read and clean within arm's reach.

Charlotte and Amelia are playing really well together...and as Elise has never really gotten the "hang" of playing, she finds herself shut out.  She mostly stands around, and after a while, starts whining that she's hungry...or watches 1.75 minutes of a movie over and over and over.  Right now it's Astroboy and Wallace and Gromit...and we still like the Halloween shorts of Shrek...STILL...Why has Netflix not taken this down???

Behaviorly, she is having a hard time, too.  Elise has been off her ADHD medication for a month or so.  And we can REALLY tell.  She is skittery.  She is hitting.  She is volatile.  But she had taken to twitching and several ticks.  It was one of the side-effects listed on her ADHD medicine.  She had a follow-up with her neuro who got to see a couple of her ticks.  I was paranoid-ly worried that the ticks were side-effects of her medicine or indicative of seizures.  But thankfully, the neuro thought not.  She is pretty sure that they are actually out-growths of OCD.  She told me that ticks usually manifest between ages 6-10 years old.  Ticks are not too foreign to us.  Both her father and myself have dealt with them ourselves.  Back to that old apple and the tree again.  And Elise loves to organize her toys by color and size.  She delights in anything that "match".  And so I am starting her back on her medications again this week.  And so we shall see.  I keep hoping we will see the end of them sooner rather than later...because unlike most of the time, I am less worried about the ticks for her, now that I am reassured that it is not a red-flag for a big baddie, I am worried for me.  There is nothing like ticks to activate a dormant issue.  I used to really have issues with it myself and was able to beat it back..but when Elise starts ticking, I feel the compulsive need to move come when someone mentions ticks (the bug) or lice...suddenly you have to itch your head...tell me you didn't just run your hand through your hair just now, right?  But back to my selfishness...I need her to stop ticking, so mine doesn't return and make me CRAZY.  Because for me, I am aware of my ticks and the inability to stop really makes me nuts.  I really don't need the power of suggestion, frankly.

In related news, Elise is now getting speech therapy from a private entity.  First time, ever.  We should have done it sooner, but this is the first time since she was 4, that I don't feel like I am drowning in commitments.  Elise and Deidra are working on feeding, sign language again, and social give and take conversation.  The sign language is as much an independent form of communication as it is a physical marker to slow Elise down and remind her all the parts of a sentence.  The therapist also gave us a referral to a speech device specialist.  This specialist will do an intake with Elise and assess her strengths and weaknesses and will recommend a device that will help her best.  I have been forced to wait out everybody's vacations, but eventually we will get some new answers.  And hopefully, Elise will qualify and she will get her hands of something that will help her communicate with her peers...and it won't be such a guessing game when she tells us all about her newest obsession...Like a few weeks ago and it took me several days to discover "Sare Bot" was "Dinosaur Max" from Dino Squad...which she LOVES...and she was SO frustrated that I could not figure out what she was talking about!!  It's one thing to not understand and be sad for her myself, it's a whole 'nother when she is aware of the communication breakdown and is depressed on her own.  That breaks my heart.

If she could tell you, she'd probably be counting down until school starts.  Right now (for once) she is playing with her sisters...School.  With their dolls.  :)