Something happened today that brought me back to that place. You know, the questioning of every positive sign and the horrible distortion of every fearful one. Hardly matters what it was, whether it was warranted, whether I was overreacting, whether I've been in blissful denial or a state of hard-earned acceptance. What I find most disturbing is how quickly I let myself be yanked down the rabbit-hole. If you are the parent of a spectrum child, you understand. If you're a professional working with a child with special needs, I hope you understand. We are torn between passionate advocacy for our children and the hope that there is some rock, somewhere, that hides the secret. I know, it's sweat and hard work and faith, every day, because evidence-based research is hard to come by, and this is all we have. And we are on it, and we are trying to untangle our feelings from what is real and not about us and best for our children. And we are frequently confused, and we are always tired.
Isaac is sleeping blissfully. His face in repose is everything I ever wanted.
I am glad you are writing about one of "those days" because one of the things I think we moms of ASD kids don't do enough is acknowledge "those days." There are a lot of "those days" at the beginning and happily you have fewer and fewer of them as your child gets older. Your child gets more capable of coping and compensating and you get more accepting and comfortable and at some point you reach the perfect balance, the place that works for your kid and works for you. (FWIW, I'm not there yet, even though she's almost 9. Still working it out but feel I'm getting closer. And I'm WAY happier and more hopeful than I was when she was 4.) So hopefully that observation makes it a bit easier to get through one of "those days."
Posted by: Rachel Norton | October 16, 2007 at 10:43 PM
Cheer up Susan! We all go down there from time to time but we manage to climb out again. Life on the spectrum is a real roller coaster, which makes the dark days darker and the bright days oh so much brighter.
Know what? Last weekend I was shouting and screaming at my son "But you haven't done that for months, why now?" He glanced at me then at the wall and said "OK, I forgot. Calm down. Count to 10. Tell me again slowly and clearly what I did wrong."
I got really mad, as I thought he was mocking me since he hears those words in my mouth umpteen times a day. Then I realised that he was actually applying what I'd taught him, only I was aat the receiving end of the advice.
Progress was staring me in the face and I didn't realise it, so firmly was my gaze fixed on the regression. Years ago, he would have been rolling on the floor and screaming. Weeks ago, he would have looked at me in exasperation and sighed without saying anything. I wanted to hug him but he pushed me away then rubbed his nose on my cheek.
It's taken 13 (long) years to get there. Moral of the story? You can't hurry progress. There'll be days when things to swimmingly and others when they do not. But all the while, Isaac is growing, learning and progressing, like all children. But at his own pace.
Take care.
Posted by: gettingthere | October 16, 2007 at 11:12 PM
I wish I could come over and give you a hug. I know this. You think things are going well, you feel good, and then out of nowhere, something shifts and you are dropped back down into the abyss. Hang in there, Susan.
It's going to happen again and again. Sometimes you will be able to say exactly why it happened, and other times you will not have a clue.
Isaac is doing so well. There are bound to be missteps and even a few steps back, but don't lose sight of the fact that you are—nonetheless—always moving forward.
Posted by: kristen | October 17, 2007 at 10:09 AM
Oh this is like picking at a scab for me today. We're having those moments of extreme lows, too. I am exhausted and teary and I hate it. The comments from the moms of older kids helps. That and the knowledge that none of us is alone. Tired? Yes. Alone? No.
Susan, if it weren't for that whole continent between us, I'd bring over a pot of tea (or coffee...or a pitcher of margaritas) and we could commiserate and then pull each other up again. Cyber hugs are about the best I've got today...xxxxxxxxxx
Posted by: Niksmom | October 17, 2007 at 10:23 AM
Oh man. I just had a week of that. Do this: Spend time with Isaac - just playing, at the beach, riding the trolleys or elevators. Something that you both love. Go for a hot chocolate. Read books. Do it far away from anyone you know, or a place where you might compare, be scrutinized, or otherwise LOOK for stuff. I've always found that getting out of the "expectations" space and into what is REAL always gets me out.
You will see progress. And you will see Isaac.
Posted by: drama mama | October 17, 2007 at 07:30 PM
Oh, and yes...
Watch that luscious video of your son playing with his therapists.
Excellent therapy, that. (I mean therapy for YOU!)
Love and kisses --
Posted by: drama mama | October 17, 2007 at 07:31 PM