Kindness

We went to a family dance at the girls' school on Sat. and what I witnessed gave me hope that some people really are teaching their daughters to be kind and caring.  There was a line for face painting and true to form T was oblivious to all others waiting and marched right to the front.  She wasn't intentionally rude, she just saw the lady painting faces and everything and everyone else became irrelevant.  I could've jumped right in, but I sat back to see how she handled it.  Unfortunately, the ADULT face painter handled it very poorly and was extremely rude.  T was on the verge of tears and headed to the back of the line. Then the DJ got to her One Direction request at just the right moment and it was back to busting a move and stimming on all the lights.  After the song was over she walked back over to the face painting line and was sad and confused to see there were other people in the place she had been in.  I again started over, but stopped myself to see what would happen.  I'm so glad I did.  The 2 girls she'd been behind pulled her into line and put her in front of them.  Of course all those behind were upset and started voicing it.  These 2 girls both firmly told everyone that T was with them and they were saving her spot.  Standing in line has NEVER been her strong point.  There could literally be 1 person in front of her and she would still lose her shit.  Not to mention that she just gets distracted by something else, like she did with the One Direction song, and then not understand why she can't just come back to her old spot at any time.  Every time she started to wander off or whatever, those 2 girls redirected her and reminded her that if she wanted her face painted she needed to stay with them.  They talked her through it and shut down any complaining from the back of the line.  She happily got a huge snake painted on her face and then moved on to more dancing and stimming without realizing how awesome that moment just was.  I went and found the girls, shook their hands and told them Thank You for looking out for her.  Later I asked T who the girls were and if they're in her class.  She said neither are in her class. She knows one from school, but the other was just a cousin T had never met.  It's been a rough year with some kids saying some very hateful and hurtful things to her because she doesn't "fit the mold".  I know that will only continue and it breaks my heart, but this one act of true kindness and empathy gave me hope that there will be others who do the same.  And Thank You to the parents who are teaching your children what it truly means to treat ALL others as you want to be treated. 

Losing Teeth = Crime Scene?

Losing teeth is a right of passage.  For most kids it's a mysterious, exciting time they can't wait to share with others.  We've experienced multiple different things when T loses teeth.  It's ranged from crying and sad to give a part of herself up to us actually not even knowing she lost a tooth because she pulled it in hiding, afraid she would be in trouble for doing so.  Whatever the thoughts going through her head, it never changes the obsessing over said loose tooth and the compulsion to GET THAT SHIT OUT.  People throw OCD around very loosely.  This is the real deal, 24/7, CAN.NOT.STOP. at any cost.    That in combination with her ridiculous pain threshold is seriously frightening. 

I was enjoying my lunch....was being the operative word here.  T was upstairs doing T things...i.e. messing with that damn tooth.  My back was to her so when she came downstairs and said, "I got it out!", I was completely unprepared for what I was about to turn around and see.  She had fists full of blood-soaked toilet paper and blood all over her face and arms....and I mean ALL OVER.  It was  running out of her mouth.  Blood doesn't bother me.  It's all that blood combined with knowing how that tooth was only slightly wiggly this morning.  When she opened her mouth it did NOT look like a simple loose tooth pull.  Blood was POURING out of the socket....again another clear indicator of how hard she worked to get it out.  *shudder*  So yeah, even though there was blood everywhere, it was the thought of what it took to get that sucker out that made lunch suddenly seem like a very bad idea.  T, on the other hand was nothing, but relieved to have rid herself of whatever misery leaving that tooth alone was causing her amazing, little brain.  After plenty of rinsing and ice, the bleeding finally stopped and without missing a beat T asked for a plate of nachos.  So while I will probably have nightmares about this, she's moved on to more important things like familiarizing herself with facts about the venomous snakes of the world.
   
*Edited to add...

T: You know when I pulled that tooth?  Yeah, I didn't expect that much blood.  I was like, WHOA that's A LOT of blood.  I sure hope I make more.

Comfort Aspie Style

One thing you know you can count on with T is no-nonsense, bottom line info. regardless of the situation.  She's not trying to be harsh, she just sees the facts and doesn't feel the need to cover them up in other frilly, feel-good statements.  For example, when I was getting ready to go in for knee surgery she put me in a bear hug, laughed maniacally, and said "I love you and I hope you don't die during surgery", then ran off.  It took a lot for her to express that and I know it came from the bottom of her little heart.  So her knowing I'm really worried about my Grandma was cause for another of those heart to heart talks.  She sat down, put her arm around my shoulders and said, "I know you're worried about Grandma M.  I'm worried too and I don't want her to die, but if she does we can always go back to her house and take more stuff.  Oh, and you can always type her name into ancestry.com and look at her information.  That will remind you of her."  And of course, she jumped up and ran off.  Again, I know that came from a deep place of love and that those were just the logical answers in her mind....we're sad, but here's how we feel better...end of story.  Thank you T, you turned my sadness and tears into fits of maniacal giggling I hope was worthy of you.     

Turner Syndrome ONLY comes in Pink

I've been away from this blog thing for awhile and WHOA have some things happened since the last post.  We've now been introduced to Turner Syndrome, which I previously just vaguely remember from genetics class.  T had appendicitis in Sept. 2012.  If it wasn't enough for our oldest daughter to have emergency surgery, the surgeon came into recovery, threw some pictures down and said, "I saw something during surgery."  Given my history, the first thing I thought was that he found cancer.  Thankfully, that's NOT what he found.  That's not to say we were prepared in any way for what he did find...or for his complete lack of understanding how his horrible delivery impacted us.  The next thing he said was that what he found is "indicative of some syndromes" and that we should see a geneticist and endocrinologist right away.  No specific syndromes mind you, just "some syndromes".  Thankfully for us, the nurses were empathetic and closed curtains, brought tissues, etc. while we literally were unable to breathe. 
When we got back upstairs to the Peds. floor, the Drs. up there were much better equipped with empathy, language, and information.  The one thing we kept hearing was the likelihood that in addition to Asperger's, Turner Syndrome was something we needed to familiarize ourselves with.  They offered to do the blood draw an send off the karyotype for us so it would save us a trip to one more specialist. 
After over a month of waiting and worrying, we finally got the results.  T does in fact have Turner Syndrome.  Only women can have Turner Syndrome.  It occurs in roughly 1 in 2500 births, only an estimated 1% of fetuses make it to term, and 10% of miscarriages are caused by Turner Syndrome.  We never would've known she has TS until things started to or were lacking in her health and physical development. 
So jumping forward, T now has an endocrinologist who will monitor her every 3 mos. for the rest of her life.  She has been on growth hormone injections for 2 mos. now and will be on those until she's considered done growing....min. 7 yrs.  She also has a cardiologist.  Thankfully she doesn't have the 2 major congenital issues often associated with TS, but she's still at great risk for various other things impacting her heart including aortic dissection.  No nephrologist for now as her renal u/s at this point shows no abnormalities.  There seem to be countless implications for her health that are lifelong and pretty heavy duty. 
We all ready knew T was an incredibly special little lady, we just really had no idea how many statistics she beat to bless our lives as one of our daughters.  I could type an endless list of info. about TS or I can make this easy for us both and share a couple links if you'd like to peruse at your leisure and educate yourself.
www.turnersyndrome.org
http://www.turnersyndromefoundation.org/

These moments make it all worth it!

I often find myself wondering if we've made and are making the right choices for T...and the rest of our family.  Like every Thurs. a.m. when I round everyone up so we can be out the door by 6:45 and at OT by 7:00.  Or that over the last 4 years our house has been in various stages of a sensory integration wonderland.  Or how about driving 45 min. to social skills group and trying to fill an hour and a half up for our other girls who had to come along since J was working?  Not to mention all the Developmental Pediatrician appts., decisions about medication, etc.  So it's safe to say I'm frequently looking for validation that what we're doing is for the absolute best.  The gaps between those times are often long and progress isn't always easy to spot. 

So when T's school OT called yesterday to see if the goals she was planning on adding to her new IEP sounded good to me, I had no idea I'd get some serious validation and have happy tears welling up the rest of the day.  We talked about goals, we talked about progress and concerns.  Keep in mind that T's been at this school for 4 yrs. now and this is the first yr. this OT has been with her.  Out of nowhere she told me that she watches T and can clearly see she's made the progress she has because of all our hard work and intervention early in her life.  That thanks to our awareness and willingness to pursue those interventions, we've done so much to positively impact her life and give her the foundation to reach her fullest potential. 

Ms. S may or may not know just how much I needed to hear that, right at that moment.  Unprompted validation and encouragement are like my own little, shiny, gold nugget I can tuck away and bring out whenever things don't seem to be going so well and I'm nearing the breaking point.  These are the moments I live for, the moments that make it all worth it! 

What I saw today

I'm always wondering and let's be honest, worrying, about what T's day is really like at school.  Preschool and Kindergarten so closely involve the parents, but making that leap to 1st grade means a lot less direct conversations with the teacher(s).  T's team is very supportive and responds very quickly when I contact them, but we just don't have that daily full report like before.  Like all parents, I worry about how successful she is, if she has friends, etc.  Unlike all parents, as the mom of an amazing little lady who has Asperger's and really struggles with all things social, I worry about every little thing she says, or doesn't say that could stigmatize her and possibly set her up for being shunned, or worse. 

When I drop her off at school, I watch in the rearview mirror until I know she's safely in the gate and monitored by the appropriate people.  Today I noticed that she stopped beside one car and was waiting for the kids to get out.  I was smiling to myself as I thought she was waiting for a friend, or at least someone she knew.  The kids got out, didn't say a word to her, and walked right past her.  She continued to stand there.  They turned around and stared at her while she stayed exactly where she was, looking at their car and stimming.  I could read the looks on their faces and my heart sank.  Now I don't really know what about the car made her stop, but something clearly interested her and it wasn't the kids getting out of it.  She paid as little attention to them as they did to her.  I'm thankful that she didn't even slightly seem to notice the looks I saw on their faces.  She was locked onto whatever it was that caught her eye and set her brain in motion. 

I wish I could stop wondering and worrying.  I wish I could care as little as she seems to about the expressions of those around her when she's stimming and/or doing something others see as odd.  Let me be clear, it has nothing to do with embarrassment and everything to do with wanting others to see past those things to the beautiful, crazy-intelligent, loving, and fiercely loyal person T is.  Because I know too many people don't take the time to see beyond what they don't think is "normal".  Because people can be horribly cruel to anything or anyone they don't understand.  Because I'm her Mama and I love my girls with a fierceness you don't want to mess with.  Because we could all learn something from T...       

Our Parrot

Though T has TONS of independent vocabulary, she's always scripted certain things that stick in her memory.  A frequent favorite is anything to do with Clorox.  Don't ask me why, but she can work a Clorox commercial into pretty much any situation.  She's also fond of working herself into Disney episodes she's heard and/or creating her own promo, or putting herself into a movie theme and presenting it to unsuspecting people as something that's happening in her own life.  Thank goodness I know what she watches because the kid is more than a little believable when she does this.  After she saw the Hannah Montana finale she had her OT convinced we had to move out of our house and that we were all very sad, but we couldn't stay here.  So it really should've come as no surprise that she's started imitating things she randomly hears in passing from other people.  The other night we went out to dinner.  We were looking over the menus when our waitress came up to the table and asked if she could get our drinks.  Without missing a beat, T said, "I think we're just gonna' go hang out at the bar."  Now I do have to be proud of the fact that she was actually looking at the waitress when she said this.....you know, instead of looking at the ceiling or something.  The waitress either didn't hear her, or pretended that she didn't, so we moved right on into ordering drinks.  After she left I asked T why she said that.  Of course, no answer.  The husband, J, did hear where that came from, though.  Apparently as we were walking in, that exact interaction was happening between another guest and the hostess.  This skill is either gonna' get us in serious trouble or seriously work to our benefit.