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.         

Praise: The Bitter Pill

I realize a lot of people have trouble accepting praise.  I just don't think they respond by turning into a belligerent sailor like T does.  Even on the best of days I know she's just trolling her internal card catalogue for the appropriate script that will get me to shut up and move on.  Our NT 5 yr old, M on the other hand, basks in the glory of any bit of praise thrown her way, like pretty much every other NT kid in the world. 

You'd think I'd learn my lesson and just hold T's praise, but yet again I'm an epic failure.  I mean seriously, how dare I wanna' throw a little glitter when she does something particularly awesome?!?  Today's incident happened after OT.  Her therapist and I were having the "after OT chat".  The OT was telling me what an amazingly great session she had.  You could see the change physically come over T as she heard this.  This isn't an "aw-shucks" kind of reaction, it's a "you must be stopped at all costs" reaction.  She flew off the floor and onto my lap, then actually tried to wrestle me down while covering my mouth with her hand.  She was growling at me that I need to stop and she doesn't want us talking about that.  Nothing was going to get through at that point so we just played it off like we were done talking and headed for the door.  Unfortunately, the damage was all ready done.  When we finally made it to the car, I was buckling K in and making sure M buckled when I realized there was no sign of T getting in on her side.  That would be because she was laying in the middle of the parking lot, oblivious to the fact that she had actually stopped traffic.  She was still wearing the scowl of doom so I knew I'd have to pick her up and force her in the car.  I may curse those damn child-locks when I actually want the kids to get out, but on days like today I at least knew she was locked in.  The 10 min. drive to school wasn't any better.  The venom was flying.  When we got to school, she was shocked that I didn't feel she was able and/or willing to walk in and find her teacher who meets us at the office on Thurs.  She glued herself to a NO PARKING sign and hurled insults at her teacher across the driveway.  After I pried her off there, drug her across the crosswalk, and handed her to her teacher, I.....ran like hell and jumped in my car.  In my defense, I did watch and make sure she wasn't actually being dangerous.  I really would've liked to hear what her and her teacher were saying to each other, but wasn't about to leave the safety of my car.  It only took 5 min. or so for T to meander inside with her teacher....God bless her. 

So why is praise such a bitter pill for T to swallow?  And why the hell can't I just learn to keep my mouth shut?  Because I keep looking for that one moment when I break through.  Seeing that even one time will make all the other times worth every second. 

You'll put the dress on and LIKE it!

Sometimes it's really hard not to laugh....or cry at the crazy shit that goes on here.  Today was one of those days that I was completely at a loss on how to get the point across.  T wanted M to play "dancing" with her.  That involved firing up the karaoke machine and in T's mind at least, putting on fancy dresses (my old dance recital costumes).  For whatever reason, M didn't want to put a dress on.  That's when things got batshit crazy up in here. 

I kept hearing that kids on the spectrum, in particular Aspies, feel the need to control who and what they're playing with at all costs.  T's never really played "with" anyone enough for me to see anything more than her being bossy. Whoa, I get it now.  Everything was great until M said she didn't want to put the dress on.  T literally came apart at the seams.  There was crying, flailing, hurling of insults.  She actually tackled her sister multiple times and told her, "I WILL get this dress on you!!!!".  How the hell do you not laugh at that?  I mean, it's not funny that M was on the receiving end, but T was completely maniacal at that point.  She kept chanting/screaming, "It's not fair.  It's my game so we play the way I want to!!!!  She's not following the rules!!".  I tried logic by telling her that when she plays her sister's game she'd have to....insert everything I could think of that she despises here...because then it would be M's game, M's rules.  That stopped her long enough for her to say, "Well, let's hope that doesn't happen.", before she went right back to it.  I tried compromise and told her M would play whatever she wanted to play as long as she didn't have to wear the dress.  That damn dress was the dealbreaker for reasons only known to T.  She then resorted to more physcial violence to see if she could beat her sister into playing.  She locked her in the freaking pantry while shouting, "Now are you going to put the dress on?!?".  I felt like we were in some alternate Silence of the Lambs universe, you know, "It rubs the lotion on it's skin or else it gets the hose again".  This went on The.Entire.Day...

Like I said, hard not to laugh, cry, admit myself to the State Hospital.  I feel for T because it's clearly almost physically painful for her not to be in control of the situation and the "rules".  I also feel for M, and once she's old enough, K for being on the receiving end of something that makes NO SENSE to them.  And my husband wondered why we were all still in our PJ's when he got home from work...

I'm a terrible mom, or am I???

Everything is so black and white in T's world.  So is it wrong that I used her news-watching obsession and Casey Anthony as a reason why I'm not the "stupid, worst mother EVER" she often claims me to be?  You know, since it's so important to show the monster's new video every other news feed?  T asked what Casey Anthony did and at first I just said she made really bad choices.  With each time that damn video pops up on the TV, that answer is that much weaker in the eyes of that too smart for her own good mind.  So finally this morning when she kept pushing for details I caved and said, "She killed her baby."  That was met with, "Her very OWN baby?!?".  Yep, her very own baby.  So she processed that for awhile and then asked 1,001 other questions to which I cut off with a simple, "You know how you get angry and say I'm the meanest, most stupid, terrible mommy EVER?  Do you think I'm so bad now that you know there are mommies out there who do those things to their babies?  I love you and do everything I can to keep you safe.  I make rules so bad things don't happen to you."  I wouldn't say that to just any 6 yr old, but we're not talking about just any 6 yr old.  We're talking about T.  So I'll be awaiting her response, that is sure to come at bedtime after she's stored it all away and taken several hours to process it all. 

And "they" say she lacks empathy

Out of the blue today, T came to me and said, "My friend is homeless.  That makes me feel like crying."  Those statements damn near made me cry.  I asked her how she knows her friend is homeless and she said, "Because she told me she is."  (which is true btw)  So right now she's outside questioning her 5 yr old sister about what it means to be homeless, if her sister cares their friends are homeless, and asking what they can do.  What was a little disturbing at first when she told me they're "playing homeless", turns out to be her way of expressing her upset and empathy for her friend's situation. 
There's all this talk about people with autism not showing and/or feeling empathy.  I think the complete opposite is true, at least of my dear T.  I believe emotions and feelings hit her so much more intensely than the majority of the NT population.  Just because someone doesn't react the way society expects doesn't mean it's wrong or absent. She may state to you that she's concerned and feels like crying (without shedding a tear or missing a beat), and I believe that is absolutely true.  I also believe in order to harness all she does feel that she has to give it in a "just the facts ma'am" way.  You see, that same 6 yr old who's stating info. in a direct, no nonsense way, is also the one who will be up at 3 am a month from now, crying about her friend's situation and worrying ceaselessly about her and the things we discussed today.  How many NT people can you say that about?