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Friday, March 23, 2012

Underneath the layers of understanding

The other day I took the rascals to a park.  I had a wonderful window of time where I wasn't in pain and I wanted to take full advantage of that break.  We went to this park down the way from our lake house. The boys love it. There are usually a bunch of kids with their parents. Some cookout; most are playing and there is a varied age range of kids.  I usually find a mom or two to chat with while I'm there.  I have missed taking the boys to the park and this was a treat for all of us.

As soon as we got there, Rascal #1 went to the swings as always and Rascal #2 found a group of kids and threw himself into the middle of them to play.  That, my friends, still astonishes me.  He had his first panic attack at 12 months old in an elevator.  He then very quickly developed severe social anxiety and could not be around more than 2 or 3 people at a time.  By the time he was 4 years old, when we'd go to parks together, if there was a child or more playing, we'd have to find another park that was empty because he'd start to panic.  It was just mortifying for him socially.  Yes, he's been in a school setting since he was 18 months old and it's been great and it's been horrible for him as you can imagine.  The good with the bad.  The one thing about my #2 is that he has always, always, thrown himself at the one thing that scares him half to death.  That child has determination on a level that I don't think I've ever experienced first hand before.  His fortitude, partnered with intervention, therapy, encouragement and the right medication have helped him become this ... social kid..

So back to the park.  One is on the swings, singing his little heart out. The other is with a group of kids.

I go over to my oldest who is swinging and I am talking with him.  There is a Mom with her 2yo daughter next to him.  The little girl is adorable and oblivious to my son.  I look at her and smile. I say to her Mom, "she is so stinkin' cute!!" Her Mom takes one step away from my son and stares straight ahead, not saying a word to me. Immediately I get that feeling in the pit of my stomach that is becoming more and more familiar to me lately.  I give her the benefit of the doubt and I spray paint the painful smile on my face, looking at her typical child.  She is now (the little one) smiling at me.  It's easy to smile back.  "How old are you?" I ask.  She mumbles something and I giggle.  I try to strike up a conversation with her Mom to be polite.  Her Mom blatantly looks at my son up and down as he sings his song backwards and wrenches his head up to the sky; with a very disgusted look on her face.  She rolls her eyes then crosses her arms over her chest and tells her daughter they are done swinging.

I am in tears, I am so angry.  And yes, I am so hurt for him.  Will it be the next time that a child or an adult do this directly to him?  When will that layer of understanding be brought to the surface and my rascal understand fully, what just transpired?  When will that one disgusted look, that comment, that one horrible name bounce off his heart and change him... and I'm not there ....

My younger rascal, in the midst of playing with his group of friends attached himself to the biggest kid of the bunch.  He wasn't the oldest but looked to have grown quicker than the rest. Much like himself.  The one thing about my younger son (ha! I love writing that because he's younger by 2 minutes!!) is that he's very good at presenting like a typical kid at first glance.  He is learning to mimic very well.  He's with neurotypical kids most of the day.  His sense of humor is really quite amazing.  He is profoundly sensitive and in tune.  He's thoughtful and able to act on those emotions appropriately.  When compared to his brother, he "looks" much higher functioning.  To professionals he is obviously autistic but to others not so much, at least at first.  However, he can only mimic so much and for so long.  I was standing near him for awhile, observing his interactions.  He stays quiet around other kids and doesn't talk. He watches.  He runs around and chases them.  He plays tag, that sort of thing.  He's very proud of his interaction --- and he should be!

This bigger kid got everyone together to figure out who was going to be "it" and then they were going to hide and the game would continue.  My youngest followed him and became his shadow.  While observing this process, my son had no idea what was going on.  Then my oldest wanted to play and he ran up and threw himself in the middle of it all.  Two girls were very sweet to him and were trying to explain what was going on, which was just too much for him.  The boys ignored him.  My oldest kept repeating "I want to play".  I tried rallying him to sit so he could play but he gave up and ran back to the swings by himself.  Which made me sad.

Someone was "it" and as everyone fled, knowing the next step, my youngest looked panicked.  He had no idea what to do next.  All the rules had been laid out but because of his processing disorders he couldn't grasp any of them.  So, he shadowed the bigger kid.  He was smiling as he chased him.  :-)  I heard the boy say, "Kid, why are you following me?" My youngest just laughed!  And the kid just shrugged and that was that.  He let my son tag a long.  I thanked God profusely in my words, my heart and with the tears in my eyes.

That innocence won't continue, though.  That layer of understanding for me was torn away that day.  My youngest and I have these soulful talks and have for a couple of years actually.  At least once a day he engages me and will say, "Mama can we talk?" We talk about everything serious to ridiculous and we both love it.  When he was about 4 yo he asked me why his older twin wouldn't play with him or look him in the eye. I told him that their brains were made a little different and that God didn't make mistakes.  So, how his brother's brain was made -- to not like tags like him, to only like foods that were cold like him, and to not look him in the eye like it was hard for him to do, is how God made the both of them and God did that on purpose because they were made perfectly, just how God wanted with all kinds of special gifts.  We problem solved that day on how to get his brother's attention when he didn't respond to questions.  It helped.  We all do that together.  We all need it.

He is aware of the difference he and his brother have.  He tells me when kids are mean to him and his brother.  When he plays "guys" (action figures) with his Daddy, he's always the bad guy beating up others. In reality he is Mr. Follow the Rules.  It's a safe way for him to break out of that and to get that aggression out in a socially acceptable way where he won't get into trouble.  He sees  how other kids are treated who are "different" and it makes him very angry.  We don't use the word "difference" in our house usually.  We say that God makes us all different from one another and how cool that is because who wants the same --- BORING!!

I try not to spend much time in my "future" thoughts of what I know will happen, what is inevitable.  I need to stay in the present with them but when the present includes a Mother who is wretched to my child and she is teaching her child intolerance and hate, those "future" fears become an instant reality.

I was talking to a friend about this and was reminded of something: although there will be many of those mothers, plenty of kids who will be like those mothers on the playground in my rascal's future, there will also be many of those little girls who reached out to my oldest when he wanted to play.  Those little girls immediately stopped being involved in their part of the game to include him. They immediately started engaging him and including him.  My friend pointed this out and I have spent the better part of last night and this morning thinking about that.  So today, my heart is in a much better place.

As always, still searching...


Monday, March 12, 2012

Perseveration

What does a parent do when their baby cannot get something out of their head?  I mean, it's beyond obsession, it's beyond a needle getting stuck in the record (and yes, I just totally aged myself there).  It's a constant, repetitive, never-ending, quest of a question that goes on, and on, and on, and on...without hesitation...with a level of resilience that is quite amazing yet so completely exhausting and overwhelming to the caregiver -- in this instance, his brother, myself and father --- that we are spent.  We walk around on eggshells. We fear saying that one. Simple. Word. That will definitely set off the wave off meltdown once again.  Lately it's been his latest toy obsession: marble run.  He has one and his AI classroom has one.  They are wonderful toys for autistic kids.  Before the marble run it was "Don't Wake Daddy".  Then it was "Pop the Pig".  Any parent of a child with autism knows this double edged sword of OCD - obsessive compulsive disorder.  How do you let them scratch the itch without feeding the beast?

Walking Around On Eggshells....



This is my life. Plain and simple. 


My soul sister and I go to "family breakfast" every Sunday with our families.  She is learning what she can and cannot say around the rascals but of course, this changes week to week, day to day, based on the aforementioned obsession de jour.  Her sweet boyfriend of 11 years asked them about a hockey game they went to with their special ed class and she shot him a look that he could have felt from across the city. "NO! Don't ask about that!" She whispered to him quietly. "I can't even ask about that?" he quietly whispered back, quickly staring at his laptop.  The boys didn't hear or suspect anything and I felt really guilty.  How was he to know that a very sweet, well intentioned question may very well trigger a meltdown in them? (as an aside: They went to this hockey game and it was a terrible sensory experience for them... think of them being in the absolutely loudest, most obnoxious place on the planet with sound coming at them at the highest decibel possible at 100mph for 4 hours straight. And multiply that times 50.  Then you'll get the picture)  

I interjected and asked the boys about the hockey game having a pretty firm grasp on the fact that I didn't think that this particular subject would be the one to push them over the edge... (yeah, ok, it worked out this time but I'll be the first to admit that sentence was totally arrogant and totally hilarious.. "having a pretty firm grasp".... c'mon!!! that's just funny right there!)  I never want to discourage anyone from asking the boys questions, especially people I consider my family, but I also understand there is an ever evolving, ever changing learning curve -- even for me.  

Today the word de jour of meltdown is "marble run" or "mouse trap game".  Who knows what tomorrow could bring and I do not want to find out.  Please God I look forward to the day when there isn't a word, or an object, or an item.... but if that day never comes... we will persevere in the midst of it all. Like always.  

Still Searching....



Thursday, March 8, 2012

Short and Sweet...or not so sweet...haven't decided yet - LOL

I want today to be a grand day...I do..honestly...really...I do...yep... okay, okay. I'm totally talking myself into this spectacularly-wonderful-awesomely-gorgeous-dancing-around-the-effin'-room-glorious-type-of day, right?

*sigh*

They say, it's all in the mind.

They say, it's all in how you look at things.

They say, it's all in your attitude.

I say, it's all about Friday, as in, Tomorrow, with a capital "T".. going out, getting Dressed, make up on, nails done, hair did, feeling like a Woman.

And if that doesn't work?  There is always Irish Whiskey.

Here's to Katy Perry....




Saturday, March 3, 2012

Too full....

So, how does one find the "right" clinical trial?  Seriously, I'm the patient here, right, and yet I'm the one researching all this stuff out trying to navigate myself around a public health system that is absolutely mind boggling.  I feel extraordinarily blessed that I have a clinical background with social work. I don't know how else I'd be faring otherwise.

Maybe I'm in denial.  Yeah. Probably am. I'm probably borrowing some level of imagined confidence to shoot out these emails to places like the NIH --- which, by the way, I imagine as these creepy, varied shades of grey institutionalized buildings from the 1950s where they perform all kinds of terrible experiments on people.  I'm sure it's nothing like that, right?  I'm sure there are at least pictures of daisies or a sad clown or two on the walls by now.

*shudders...*  So...very...creeeepy...


As I sit here and sip my Chai Latte with real whipped creme, thank you very much, I'm attempting to ignore the past week.  Really, the past 3 days to be exact. And I really don't like that. I like treasuring and cherishing every day God has blessed me with.  Honestly?  The last three days have been beyond, beyond... I find myself heavy sighing a lot.  I feel my heart pounding in my chest occasionally.  I'm really on edge tonite (and I'm sure the caffeine will help that tremendously! lol).  Rascal #1 is having severe meltdowns that I haven't seen before and they are completely out of the blue.  I had to take him to the ER today because of the 3 he had today alone, his last one took over 2+ hours with full on escalation, self injury... I called his pediatrician after hours to find out what in the hell I could do and also wanted to reassure that nagging voice in the back of my head that I wasn't overlooking a medical problem that could be triggering all of this mess.  The nurse agreed with me and so off we went.  I was really proud of how calm I stayed. Not that I get worked up like you'd think -- I'm not a yeller, or a panicker, I worry.  That's my niche.  But where I stayed was in his head and thought how tormented he must be in that place and how alone and scared he must feel. There was NO WAY I was leaving him there regardless of  how emotionally drained I felt.  It was nothing compared to his pain and agony.  His poor twin was triggered all over the place, reacting, hiding out, trying to escape it in every facet imaginable.

Today 100% of me hated autism.  I rarely ---rarely -- feel like that.  And it really hurt my heart.

He is asleep, peaceful at last, prayed for intensely, and watched often.  His brother, curled up around him, protectively, both, so very loved.  Their mother.... hmmm....

tonite, I'm not so sure.

Still searching.