Friday, April 30, 2010

What It Is

It is what it is. Or better yet, "so it goes". Accepting what we cannot change. Letting the inevitable highs and lows, swirls and eddies flow over us and on. Learning to be at peace with what is.

The alternative: beating bloody fists against the unmovable wall of circumstance, and time and chance. Spending energy and anger grasping at illusions. Frustration.

I know my preferred path, obviously. I want to be like Billy Pilgrim, wise and impassive. Knowing when and how to be still and let it go. But every time I think I have come along down the path to acceptance and peace, I get bitch slapped by what is, and am left blinking back tears in the aftermath. C'mon E, you know this already. You know that this is the way it is, what's with all the fruitless angst?

Yesterday the DH and I accompanied both sons on a field trip to the museum, and "what is" caught in my throat and made my heart heavy, just like it was something new and unexpected. I was surprised by my own sadness. I guess it is still there, under the top layers of acceptance, and educating myself, and advocating, and moving on with hope and possibility into the future...still there, a seed of denial, a stubborn refusal, a petulant "this just isn't fair!".

What is:
-my son pale as paper, deep purple smudges under his eyes, as frail and strange and quiet as an entirely different species landed amongst the robust, boisterous other kids
-he is almost beside himself with anxiety at the noise, and being out of his routine. He looks as if he's being led to the guillotine, fear and tension etched in every feature. Other parents keep asking me if he is OK.
-he refuses any help. A quiet break? Noise blocking headphones? No. He is painfully sensitive to the idea of being different, and he can't see past the overwhelming now that he is immersed in, forward to the relief these items might bring, so he refuses. To try to force the matter will break the thin string that he is hanging from. I desperately want to help him, but there is nothing he will let me do for him. I can't even hug him, or comfort him with words, the extra sensory input of touch or verbal will just make his overload worse. He is utterly alone in this.
-I follow him, about 10 paces behind. Making sure he is safe, intervening if he gets entangled with another kid, making suggestions when I think he can handle it, about what he could do or shouldn't do. It is unbelievably crowded. He paces around and around the various exhibits. Every once in awhile he slows down and engages with something, and seems to relax a bit, and my hope rises that the activity will be able to distract him into a bit of calm, but seconds later the relentless pacing begins again.
-the other kids ignore him. Even the ones that are his friends (should I put "friends" in quotation marks? I'm not sure). He has no one to play with at recess anymore. I can't blame the other kids, he is very hard to engage with, and right now impossible. One of the other parents, I want to punch in the face. She keeps giving him dirty looks. Sometimes it would be a relief to be the type of person who does those kind of things. "Hey, lady?" *POW* Right in the kisser. "He's doing the best he can, you smug, judgmental asshole. Mind your own effing business."
-I find myself welling with tears in the dark of the planetarium. His "best friend" has just made an effort to avoid sitting by him. Oh, my son, how hard are these next few years going to be for you?

But I am used to this. All of this. Most days, I can even find the good in it all, the wellspring of hope, the pride in all the beneficial differences and in his incredible strength and tenacity, and I find humour...buckets and gobs of it, in all the awkward, wonderful moments that make up our days, and I figure I am pretty well along my way on that road to acceptance. As L said,"It (Asperger's) is not a disease. It is not an illness, and it is not as bad as some people might think." We get on with things quite nicely, thank you very much. Yesterday, however, the unfairness of it knotted into my chest and pulled sharply.

I wish things were easier for him. I wish, I wish, I wish.

After the field trip, I had a long meeting with my other sons' teacher. Yeah. That was fun too. Problems on top of problems, on top of the barriers between him and being happy and doing well at school. I will keep chipping away at those barriers. I won't ever give up, but yesterday it felt like I was working away with a toothpick...little bit by little tiny bit. There were about 8 things on the agenda for the meeting, I came away hoping that we have come to a consensus on how to improve things on one of them. Fingers crossed. This is a hard slog, not a clear path. That is just the way it is. Expect it. Keep moving forward through it.

To end on a positive note, one of those moments of humour and joy:
E having high social anxiety and a tenuous grasp on the concept of what is embarrassing and what isn't, will often refuse to talk, smile, or laugh in public and will rebuff any social interaction but the most basic that comes from us. Most 10 year old boys would recoil at being called Lovie-Muffin in front of their friends, but E will recoil at being asked how his day was, as if it crosses the same boundary of mortification, because he just can't sort out the difference. And so, while he is a very affectionate and fun kid at home, he is stiff and chilly to the extreme when we are out in the world. We had a talk about this before the field trip, and noticed that he was much more receptive yesterday. In the evening he explained that this was because of 2 things, #1 the talk, and #2 he had heard one of his friend's commenting to the other about how lucky E was to have a dad "like that" (as in, a dad who is funny and fun, engaged with his kids and maybe even...shock, gasp...a wee little bit cool), and the friend heartily agreed. E said that made him feel better about his parents not being soooooOOooooo embarrassing.


And so it goes.


  1. Oh, Evangeline. I am reading this and crying. My heart is breaking for your sadness and for your boy's sadness. There are so many cruel people out there, and I'm constantly surprised by that.
    We want the best for our children. I know I do, and I know you do, and I'm thinking that if every parent wants the same for theirs, then they must want the best for all the children. But they don't. Thinking of you. You are a strong, strong woman.

  2. These moments are so heartbreaking. I wish I could hug you both and share the load. These moments will pass. Your boy is smart, and fierce of heart and he will find a way. Maybe the school will never be a place he finds peace or happiness, but he will find it in his life, just like the flower finds sun. I believe this.
    My heart aches for the mother who feels her son's pain and can't soothe it, and for the quiet little boy who needs to find his way.
    Maybe it's time to not go on the group field trips? Does he want to go, but find it overwhelming?
    We suffer from reality letdown a lot, things are never quite as exciting or awesome as we expect them to be, and the emotional rollercoaster rides again. But thank goodness for good days and bad days. You are blessed that your amazing sons are not locked away inside. And you are blessed that there is so much intelligence waiting for a way to burst out.
    Remember what the good doctor said - they find their way....
    thinking of you all, sending hugs.

  3. If I had been there, I would have boffed that insensitive asshole in the kisser FOR YOU. Or at least given that parent a tongue lashing. What do I care? I don't live here.

    -Also, I love the reaching for expectations print. Beautiful and heart-wrenching and so dead-on appropriate.

  4. @Angie You are right, almost all parents care about their own kids, but definitely not about ALL kids. We sure learned this lesson when the boys were first dxed with life threatening allergies. I can understand the lady's POV yesterday, her concern ends with her own daughter, and how awful that her little girl is exposed to this strange, strange boy. What is his problem anyway? And why isn't his mom doing something about it? But understanding it, doesn't make it anymore pleasant to deal with sometimes. And thank you. I was sad yesterday, and it kind of took me by surprise, because it should be old hat by now, but I guess it never stops hurting when your kids hurt even if you are well versed in the why's and wherefore's.

    @Mel He is the one who pushes himself to go. He really likes the museum (of course, much quieter when we are there as a family), and he wants to do what the other kids do. We went along and took our own vehicle, so that he wouldn't have to ride on the bus (which makes it 100 times worse), and so that we could take him away from the action for quiet breaks if he needed them (which he refused). He is actually finding situations like these more overwhelming as he gets older, and I think the magnitude of the stress of it caught him off guard too. Poor little guy. But his feelings about the trip today are that it was "medium", which I love. I love that he can find enough to be positive about in a day, that looked absolutely wretched from the outside, to call it "medium". That's my brave, tenacious kid. :) And you are right, we are so lucky. I need to believe they will find their way(s). As I told the teacher in measured frustration, after she expressed her grave concerns for his/their futures and how she has "no idea how they will get through grade 5 let alone the higher grades" (*ugh*), that there is no reason why either of them can't do and be anything they want in life, it is just a matter of figuring out how to get them there!

  5. wow. that's all i can think to say.
    you are awesome. that too.
    you artwork is amazing as well as your words.
    thanks for sharing E.

  6. @K Thanks, and I know you would've. :) Sometimes trying to catch the flies with logic and honey gets a bit old and it would feel f**king fantastic just to let 'em have it!

  7. well, I think you stay so very positive about it all dear heart, it has to be so challenging and yet you do find the goodness in it all every time. It will all work out, it is just hard to see it when you are in the thick of it. and your work reflects it all, just fabulous and heart felt! xx's

  8. i'm not gonna put any stars.
    that woman is a fucking bitch and a big reason why there is so much hate crime in the world. i'm not a violent dude, but side-eyed slags like her make a good case for public stranglings. shut her inside her house and lock the door from the outside.

    as to your day-to-day, not to treat anything lightly, but it sounds to me like those boys are experiencing what all boys do at that age, with all the jangly nerves showing. they're kicking ass. and when the chips are down, they have two parents as the best back-up any 10 year old could have. you're their TJ Hooker. their BA Baracus. their Samwise.

  9. Ay yi yi. Aye yai yai. (how spell it?) And an exhausting day was had by all. Sheesh. But I think L is right "not as bad as some people might think." Probably easier to be him than be you two watching, empathizing, using all those push-me-pull-you psychic muscles to try to help but not too much. And wise little E, more of a politician than you thought, hey? Putting "the talk" first and then, oh yeah, the kids thought dad was cool. :-D Your friends left lovely comments. Meli as wise as ever and who is this Craig H that I now have a crush on? :) deb

  10. I do have the best, smartest, kindest comments ever on my blog, don't I? I appreciate, appreciate, appreciate. Just soaking it all in.

    Right now it is the weekend. Life is very, very, very good, and it is easy to see everything they (sons) are instead of all the "can'ts" and struggles. I 'spect you are right Deb, that it is harder watching and worrying than for him walking through it as brave and resilient as he is. And E IS such a little politician! Or a lawyer. He told his teacher the other day, that he'd found a "loophole" in one of her rules, therefore did not need to follow it. Lawd have mercy for when that kid is a teenager! LOL

    And Craig, "their Samwise". Sniff. *heartstrings giving big comic book-style twang*


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