There were so many highlights, so many wonderful moments this past weekend…but, as what should have been one of those highlights played out on a screen, autism reached out and clamped its heavy hands around my throat and squeezed. I didn’t say anything for fear that maybe I was seeing something that my wife did not. I wanted her to turn it off.
I didn’t say a word until it was done.
That was…hard, I said.
And then I broke down. I broke down and cried. I cried like a young child who has been told the brand new puppy his family got must be returned. I cried like a young teenager who just found out her crush likes the girl who terrorizes her. I cried, wanting scream, It’s not fair!!! I wept like I have not wept in a long time.
***
This moment happened over 24 hours after the actual event. We had traveled south for a cousin’s Bat Mitzvah. The cousin and her family (and even her friends) had gone out of their way to make the event user-friendly for Brooke. Brooke herself had a wonderful time, dancing the night away on the dance floor, even when no one else was dancing. She got her cousins to join her; she got her cousin’s friends to join her. To say she was seamlessly blending in would be a tremendous over-statement, but the truth is, those around her were accepting her for who she was and as parents, it felt great.
Before the party began, all of the kids were called into the ballroom to learn a flash mob style dance that would take place on the Bat Mitzvah girl’s entrance. Honestly, it was pretty darn cool! While in the cocktail hour I got a text from Jess saying that Brooke was getting right in there learning the moves. Half an hour later, as the family members were being called in, I was beaming, watching my little Brooke stepping from side to side clapping, watching the people around her to make sure she was doing the right moves. At the big entrance, the kids mobbed the floor and went into the routine. Brooke went right along, watching, imitating, even anticipating. I was so proud of her.
The rest of the night, she flittered back and forth between the kids table, the dance floor and occasionally just checking in with us to make sure we were there. It was by far the easiest large scale party we have done with her – ever! I am so grateful to our cousins and their friends for making it so easy. On the way back to the hotel, both Jess and I told both of our girls just how proud we were of them, how well they handled themselves.
***
But then last night I helped Jess upload the video of “the Grand Entrance”. I had been eagerly anticipating watching the video, reliving the awesome moment of Brooke participating in a flash mob; excited to see her dance with a group; waiting to exorcise the demons of the ballet recital that never was so many years ago that left me weeping in a parking lot for 20 minutes.
When the video finally came through, I pressed play. I was so excited.
And then the wind simply died. My anticipation was rewarded with a slap, a dose of raw reality.
I wanted to turn it off. Yes, she was in there. Yes, she was trying to keep up. But nothing was in sync, turns were in the opposite direction, occasionally she’d jump ahead. I did not want to feel this way about something I had felt such pride about not 24 hours earlier. But I can’t deny that it hurt to watch her; I can’t deny that my heart broke; I can’t deny that fear of the future got the better of me – what happens when she’s 13 and wants to go to a school dance? Will her friends be so accommodating? Will she always be “out of sync”?
And so I cried, weeping into my pillow like no man ever wants to admit.
God, I hate autism; any disability; though I know having to deal with it has made me a better man, husband and father, I still fail to see why God needed to brush my baby, anybody’s baby, with autism.
***
I know this pain will pass – at least on the surface. I know there are more victories than defeats ahead of us. I know the world is becoming a friendlier place for those like Brooke. I know, selfishly, that I will recover.
But for now, it hurts.
Run Luau Run 
There’s really nothing I can say (as there wasn’t anything I could say when I read Jess’s version earlier today) except that I am sending loads of supportive thoughts your way and I appreciate as always your candor.
{hugs}
Hugs to you. So hard. I cannot imagine
I can only say that I know that pain… though a little differently. My son is in his seventh year and I am only just now starting to “work” at letting him go. He was on the porch with the girl upstairs and her friend. He seems to be so enamored of this girl who is just a year older, yet she is so far advanced. She’s just a girl, but she is bossy and manipulative. She told him to sweep and he swept the floor, cleaning up after her mess. That raised my hackles until I could stand no more and said something. Even as I spoke, I knew that I should have just stayed out of it because Gabe needs to experience things on his own… ugh. Later when I spoke to him to try and tell him she was taking advantage of him, he simply said he wanted to be a good neighbor. OMG, I am so proud of him… I want to protect him from the world. He still has child’s eyes, maybe even more so than the average kid…. but he’s above average and seriously, I don’t want him to lose his innocence, this child-like view of the world… I wonder who is in the better position here… me or him. I constantly come back to the idea that it is him. Can he be hurt if he is always seeing the good in this world? I don’t know that, but for him it seems that he’s not making an effort to accommodate or tolerant. He’s just being himself and I see that he’s not suffering. So for now, I can believe that he is not feeling the effects of a manipulative, bossy little girl. He’s being a good neighbor.
I know exactly. I watched my Jack at a school carnival last week and watched how out of step he was and how the other kids mostly kind of brushed him off and I hurt for him now and him in the future. It is phenomenally hard to watch your kids struggle.
So sorry to hear this. These moments are the worst. Not only do you have to see your child struggle, but it taints your wonderful memory of the original event. Sending good feelings your way. This too shall pass, but it won’t get any easier the next time. Hoping you can hang on to all the good that came from this weekend.
Lump in my throat as I read. I am all too familiar with this hurt. I’ve seen it with Helen and I’ve seen it with Hana. It is painful. ((Hugs))
I understand! Leaps and bounds and defeats!
I understand!
Love you,
Mom
Dude, you are an awesome dad!
That raw pain and fear that grips at times like this is heartbreaking, it just hurts so damn much. My son has a school disco coming up (he is 6) and I cant be there, and I am terrified of letting him go. He will love it, he will dance like there is no one there, he will fly. But he will be as you say ‘out of sync’ with his classmates. I don’t want to let him go.
You are such a wonderful Dad… Your honesty is amazing and so is your family. Wishing all of us a lot more victories!
Go for a run – now!
Just like the camera adds 10 pounds to your figure, it provides a different filter to any experience. It dosn’t make the live version any less real or wonderful.
As for me, I’m leaving the blinders on, I only see my kid in the room and at the party, and don’t give a whit about how he is fitting in. He is not interested in being a part of something social, or so it seems and so he tells me. That is my biggest struggle, should I push him to participate with others when he seems to truly not want to, just so he can “fit in”. Am I harming him by letting him be himself – which is alone. I don’t want him to want to be alone forever, but how do I fix what seems to be his natural inclination? How much do I push a seven year old before he gets even more desparate for his space? Sorry to go off on a tangent.
Hugs to you and Jess.
*hugs* I read about this on Jess’s blog and had to stop by. I think this is the hardest part of all. We know our own child and watch as they take each step forward, fumble, try again and then move forward and wow we are so happy. Then we fall into what I call the “reality trap” which can eat at us if let it which is seeing our child beside other children…..sometimes we are human (yes we are) and you are and we all our allowed to feel like this. It’s okay.
Thank you for sharing this, Luau. Your honesty and love for your girl inspire many of us.
Peaks and valleys .. but what a view, right?
Thanks for sharing this Luau! As a mom of a 13 year old daughter on the spectrum I hope I can give you a glimpse of hope! My daughter attended her 1st school dance last fall and I had all of your fears. I wrote about it on my blog and it is by far one of my favorite memories EVER! I look forward to hearing about Brooke’s 1st dance & how she conquered it!! Blessings to you and your family!
http://iamjuju.com/2011/09/07/not-just-a-dance/