This morning the sound of Ethan happily playing with his sleepover friend, Sage, would have brought me much happiness, except, except…. it made me cry. Made me cry because I almost never hear this in the morning in spite of Ethan having a twin brother. Because of Autism.
Ethan is an 8 year old boy: they talk with their friends, play games that involve a lot of conversations, pretending and planning and even their battles are all words. “I am using water smite on you now”.
And Jacob, he screeches like a monster and throws toys. It’s not that he’s non-verbal, he talks a lot (actually all the time, but that’s another long post to come), but doesn’t have the ability to keep up with the rapid flow of thoughts and ideas exchanged in typical play. He can carry on a conversation, IF it’s on his terms, his topic, and Ethan has just not signed up for that job.
Most mornings start like this… Jacob: “Ethan wake up, are you awake, Ethan? Eeeeeethan? Are you a robot? Ethan, are you a robot? Wake up, Ethan! Are you a robot?” Ethan: “SHUT UP JACOB!!!!! Mom, Jacob is bothering me, make him stop, make him shut up, he is the stupidest most annoying meanest brother in the world!!!!! Moooooom!”
And some days I am sanguine, take it in stride, separate them (as much as I can in a small apartment), get them (separately) busy, feed them (different breakfasts), get them ready for (their separate) schools or camp and summer school and their (separate) busy days.
And other days it’s hard. The woulda-been, coulda-been, shoulda-beens bite me in the ass and I mourn the family we are NOT, the family time we just can’t have, the ease of two kids the same gender and age that I see taking place in the families of twins we know and hang out with.
This morning hearing Ethan so happy playing with his friend brings it all back, the dashed expectations: My sons will not be lonely they will have each other. Instead, today Ethan is happy and Jacob is lonely. Most days they are both lonely, Ethan bothered, angry and Jacob hurt, rejected. And I can’t fix it, I just don’t know how, I feel like a failure as a mother.
Maybe if I got up at 5 am to get everything ready so in the mornings I didn’t have to be busy, I could just facilitate and scaffold their interactions with each other. But what even then? Ethan would still want to play games whose sophistication is so beyond Jacob, and Jake would still be too loud, too physical, too repetitive for his nimble minded brother, so what then? They could play successfully for 10 minutes, with me sculpting every moment, maybe, on the good days, and then, back to business as usual for the rest of the morning? And I got up at 5 freaking AM for that? Um, no thanks.
I read a lot of true and fictional accounts of families with siblings both on & off the autism spectrum, trying to feel not so alone, trying to get into Ethan’s head, figure out how I can help make it easier. And you know what? They all suck.
Not because they are not wonderful, they are, especially this one: Rules by Cynthia Lord (who obviously has a kid on the spectrum herself). But because all those boys and girls (and for some reason it’s usually girls) while they may have difficult moments, when push comes to shove, they are unfailingly loyal to their Autistic brothers. Their parents describe them as their kid’s best therapist. And that is so far from happening in our house, I end up feeling worse rather than comforted, and no more clued in to what I can do to turn things around than before.
So, the sounds of happy morning playtime in my house are so rare. They do happen from time to time, when Ethan is feeling generous and happy and Jacob is being calm, his sweet funny self flying free, not frustrated by Ethan’s rejections.
A few weeks back, on a lazy Sunday morning, they took all their stuffed Pokemon
I held my breath, tiptoeing, smiling, puttering quietly around the house so as not to break the magic yet. Like an amateur juggler holding too many balls, I knew they were going to start dropping soon, but for just a moment they were all gloriously in the air, and all was right with the world.
NOTE: This was actually written 2 weeks ago on July 11th, so that’s the “today” of the post, not to confuse anyone who might have been at my boys birthday party today, actually, and be going “huh?” I am just so overwhelmed these days, I wrote & then lost this until now, searching for something to throw up quickly to not be completely lame having gone a month without actually posting anything.
I can identify. I have 7 kids. They've never all gotten along at the same time. Fortunately, they have other options.
ReplyDeleteBut the pairs I'm thinking of - my two sets of (OMG you had them THAT far apart????) kids...sound like your twins.
To be honest, I have despaired as I watch them head out separate doors for separate classrooms with separate lunches and different ideas about the world. But...then there come these moments of heart-swelling pride, when the principal calls to tell you that your NT beat the crap outta some kids in your ASD's class. Why, you ask? Because they were picking on his brother.
For all that they are different, and your NT is irritated and your ASD lonely...they are joined at the heart, and when it matters, it shows. At home, they both know YOU are there, and you settle the differences and make things work. Out in the world, it's just them, they stick together.
I've been thinking about this recently, how brilliant our 11 year old daughter is with her 8 year old brother. And how long that's going to last. And then it struck me: it must be a lot easier for a sibling to 'care'for an autistic brother if they're the older one, as they're already feeling protective. But Ethan probably sees his brother as an equal in part - a peer, anyway - and therefore expects him to hold his own. But what I thought mostly, is how much all of us parents who congratulate ourselves on this kind and helpful older siblings are placing weight on these sibling's shoulders. Probably too much weight. Probably brothers and sisters of autistic kids need to be offered help as much as they need to give it. Food for thought.
ReplyDeleteHope the birthday party went well!
Many hugs
ReplyDeleteI feel your pain
Sometimes the only comfort is knowing that you are doing your best ( and its clear that you are )
I read once (in Mom-101, maybe?) that the best thing to do in preparation for parenthood is to accept that everything you do is right, and everything you do is wrong. So that's point A. Point B? At the risk of being cynical, I wouldn't necessarily believe ALL that you read. I'm sure that many kids in Ethan's situation have really great moments with their siblings (and I bet that Ethan does too), but what doesn't make it into the (public) story are the moments that you're honest enough to write about. It's hard to be 8 under any circumstances (oh hell, it's hard to be ANY age) esp b/c boys are getting messages from the outside world about being "manly" and so forth (right, those aren't dolls! they're action figures!) ... Things in our house aren't all peachy keen, and we don't have the added pressures that face your family. I applaud your grace, wit, and honesty.
ReplyDeleteHere's my version of yesterday, aka, the longest day ever:
http://mannahattamamma.com/2010/07/a-day-in-the-life-or-life-in-an-unfair-state/
I am so glad you posted this, Varda. It's wonderful. In a sad way, of course, but it's so honest, so raw. Remember that you're doing the best you can. And that? Is awesome.
ReplyDeleteThis post made me feel like I was right next to you, sharing a coffee, listening to you- and I wanted to tell you as if I was right there: "you don't need to get up at 5 am- there's nothing that can prepare you for what your kids bring that day except what you have already done to prepare: being a good person and a great mom."
ReplyDeleteI'm so glad you found this post.
A beautifully written post Varda, healthy and nourishing thanks to it's lack of sugar coating. I think Jane made an important point... my kids are never at each other's throats when they are out in the larger world... they save that for the safety zone of the parents. As your boys grow older, and differentiate even more, I'm sure Ethan's ability to be compassionate with Jacob will expand, just as Jacob grows his own circle of compatible and beloved friends. Once some of the pressure is off, as they each feel more secure in the world, they will be able to recognize (and demonstrate) their bond more clearly.
ReplyDelete-eve in portland-
Wow - that's really hard. I have no idea what it is like to have an autistic child but I do know what it's like to live with two sons who act like they hate each other a great deal of the time so maybe it's not just the autism? My two break my heart sometimes as the older one rejcts the younger one in a bid for independence and distance and the younger one has developed a hard shell and nifty line in verbal put-downs to cope with the rejection. It is particularly bad when the older one is having a hard time outside the home as he then takes out his frustration on his brother. I hope they would stick up for each other when away from me but right now I'm not sure they would. I hope that maturity will change some of that which I guess is not something you can count on and why it must feel so devastating. If it's any consolation, I've seen from my older child that dealing with some hard stuff makes you a stronger and more caring person in the long run. We can't fix everything for them. I find that hard to live with but the older they get the more I come to accept it's true.
ReplyDeleteAnother beautiful post! I think i will do myself a favor and follow.
ReplyDelete=)