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~

It started out so damned well. She’d handled the crowds. She’d made it through the seemingly interminable wait with an uncharacteristic calm. She was excited for the show to begin. She’d been hearing the songs for weeks, taking it all in as her sister practiced … and practiced and practiced … at home. She knew that her sister was playing Alice, the mayor’s wife. She knew her lines. She was ready.

The first act went wonderfully. Katie was incredible, lighting up the house as I knew she would. Brooke looked up at the stage, hummed along with the music, paid attention to all of it. Each time her sister disappeared into the wings, she asked, “Where’s Katie?” I assured her again and again that she’d be back soon.

For weeks, we’d been practicing being good audience members. We’d reminded her that we needed to use our listening ears and keep as quiet as we could. It had become a script. “Do we say, “Hi, Katie, how ya doin?” when she’s in the play?” she’d ask. “No, baby,” we’d say, “we don’t.” Of course the script needed to be repeated throughout the show. “Do we say, “Hi, Katie, how ya doin?” she asked. I put a finger to my lips. Rinse, repeat. She was speaking quietly enough that I wasn’t worried. We were doing fine.

She snuggled into my arm. I looked at Luau, he at me. We smiled, thinking we’d done it. She’d done it. There we were, enjoying Katie’s play together.

She tried the bunny noises – hoping to kick off Max and Ruby in Ruby’s library. Again, I put my finger to my lips. She fidgeted in the seat. She began to bounce from her knees to her bottom and back again. Her body ached to move. I squeezed her arms, one by one, section by section, offering the deep pressure that can often manage to ease her need to wiggle. It did. For a minute or two.

She told Luau that the play was too long. She asked to go to the bathroom. Luau, since he was sitting on the end of the row, took her.

They snuck out in the middle of a scene. As they came back in, she ran ahead of him and charged toward the stage. I panicked and stage whispered her name as I got up and scooped her into a gently restraining hug. Disaster averted, she settled back in, but it didn’t last long.

She made it to intermission and then fell apart.

I took her for a walk. I pulled out every trick I’ve got, trying, trying, trying to make it bearable for her – to stave off the brewing storm. But as the winds began to howl and the driving, icy rain whipped our skin, it was obvious — there was nothing that I could do, and nothing that she could do, but hunker down and see it through. Words were gone. Reason was empty. Logic was futile. The storm was raging.

There was no longer even a remote possibility that she could go back into the theater. For her, for Katie, for all the kids who had worked so hard, it simply wasn’t a choice. We headed back to the auditorium to find Luau and figure out that to do.

We got back too late. Intermission was over. The doors were closed, the house lights down. The show had begun again. I told her Mama needed a second to think. She shrieked, then growled. She had no words. And I had no idea what to do. Standing naked in the middle of a hurricane, what can you do?

Before I’d taken her for the walk, Luau had said that perhaps he should take her home. I had wanted to try to find a way for her – for us – to stay. Now I knew there was no other choice.

I asked a close friend who was working the concession stand to stay with Brooke long enough for me to go get Luau. I wrapped my arms around her and kissed her tear-streaked face. I told her how very much I loved her. I told her that she was going to stay right there with J and Daddy would be out for her in less than a minute. I didn’t know what else to do. I was sure that I didn’t know anything that was of use to anyone. But I did know that once she was away from that place, she’d be okay. But Katie would not be okay if I left. She’d been working for this moment for months. It meant everything to her. She deserved her Mama there. I couldn’t leave.

I ran through the dark theater in a low crouch. I reached Luau and whispered something – meltdown, bad, can’t recover, no other choice, home. I don’t know what I said. I don’t know what he said. He disappeared up the aisle to rescue our girl and I sat down, trying not to drown.

I was grateful for the dark. Perhaps somehow it would hide the tears streaming unbidden down my face, hide the two empty seats beside me, hide my anger – no, rage – yes, that’s better, rage – my frustration, my impotence — god, what’s worse than being impotent in the face of a child’s suffering? — I just wanted to HIDE.

It hit me like a freight train. What had I done? Oh my God, what the hell had I done? It was desperately unfair to assume that Luau would take her home. There was no discussion. No opportunity for him to say no. What was he going to do, debate with his crying wife in the middle of the school play? I’d given him no choice. I’d cornered him into leaving.

I nearly choked on my tears, using every bit of control I had left to keep from gagging on an errant sob. I was wrong. Nothing was right. The entire situation sucked.

I knew that Katie would be back on stage soon. I knew that had to get it together for her. So too, I knew that she’d see those painfully empty seats and know that they were gone. Know that we weren’t there as a family. Know … Again. We’d tried, baby, I willed her to feel the words – wherever she was. We tried.

Soon enough, she came bouncing out onto the stage. Her eyes locked in on me and I did my best to reflect her wide grin. I winked at her. I love you, sweet girl. Please know how much I love you. How much Daddy, Brooke and I *all* love you. 

A little voice in my ear snapped me out of my revery. I would have sworn I’d heard a whispered, “Mama.” I was giddy with the thought that somehow Luau had miraculously calmed Brooke down and brought her back.

I turned to the little boy who must have said, “Ma’am?” and nodded, yes, he and his friend were welcome to the seats. No, no one would be coming back for them.

Katie skipped back around to the front of the stage. She looked to me again, then, as if in slow motion, I watched her eyes move to the right and take in the two little boys who sat where her Daddy and sister should have been. I’m sorry, baby, I’m just so sorry.

The play ended with all its attendant fanfare. When Katie finally came out, she asked what happened to Luau and Brooke. “I figured,” she said. I told her that Daddy had left so that I could stay. That it was really, really hard for him to miss it. “Mama, I get it,” she said.

The tears just wouldn’t stop. No matter how many times I’d apologized to Luau, no matter how much praise I’d lavished on Katie in a flat-footed attempt to make up for – well, all of it before sending her off to bed, no matter how long I lingered over Brooke’s beautiful sleeping form, whispering Mama love into her dreams, telling her how sorry I was that it was all so hard for her. The tears wouldn’t stop.

A friend texted me. You ok? As I poured my answer into the keys, I found myself committing what I’ve been so well taught by my autistic friends to believe is the most cardinal of sins — separating autism from my girl. But I was angry and I was sad and I was frustrated and I was tired and I was tired of being so goddamned tired and I was tired of feeling like there’s never a right answer but only the least wrong ones and I was tired of recon and planning and strategizing and failing and watching it all go to shit anyway and I was tired of hurricanes and crisis management and post-storm clean-up.

I was tired of watching my child struggle in a way no child ever should.

So I did it. I did what I’ve been so well taught to never do. I railed against the thing that made it all so God-damned hard. I sent a small group of mama friends an F bomb laden tirade. I’m tired, I said, of mother#$%&ing autism.

I debated whether or not to post this. For so many reasons, not least of which is that, as you know, I take great care not to demonize autism. There is so much in this life that is beautiful and sweet and triumphant. There is so much to celebrate and so much that, not just despite autism, but because of it, we, as a family, get to experience more vividly and feel more deeply and enjoy more exquisitely than those who don’t know life through its lens.

But that doesn’t mean that sometimes – just sometimes, it doesn’t really suck. And it’s got to be okay to say that. For me, for Luau, for Katie, but, most importantly, for Brooke. The other night sucked for her. It just did. And it sucked because autism made it hard. She has to have the freedom to say that out loud if it’s what she’s feeling.

I love my girl. I love her from her head to her toes and I love her exactly how she is THISEXACTVERYSECOND. Anyone who has been reading this blog for more than a minute knows that to be true. More importantly, SHE knows it to be true. But I wish that her life were easier. And although it always starts and ends there – with HER, her life is, by extension, OUR life as a family. And I wish that that were easier too.

And that’s okay to say. It has to be.

Even, once in a while, in a safe space, it’s okay to say it with an F bomb or two.

*

 

A couple of notes:

~ Brooke wanted to go to the play. We’d given her the option of staying home and she’d refused. There were two performances – she asked to come for one and sit out the second (the following night.)

~ Next time, we will have a family friend (whom she adores) on call. We’ll buy him a ticket and he’ll be there to take her to hang out in a quiet place if necessary. I think simply having the safety net will help a great deal – she will know that she has options. Thank you, J, for offering. 

~ We went back the following night and saw Katie perform. She was nothing less than brilliant. 

 

49 thoughts on “untitled

  1. I have similar experiences. You have a good plan for the future. Plays are particularly hard for my guy. Too much waiting. Too many expectations. A sensory obstacle course for him. What has worked for us is to plan a favorite caregiver and video the event for him to watch later.

  2. Oh Jess I am so sorry. Thank you for being so honest with us though. It makes me feel less alone in my thoughts and wishes. Doing things as a family has completely changed for all of us and it’s just not fair,not to C,not to his brothers and sister and yes,not to us, his Mom and Dad who love him so much and wouldn’t trade him for the world.

  3. I know many of us get this. In our house it has been missed band concerts and early exits from a science fair. I don’t even get the “I get it” anymore. It is just understood. We make the decisions ahead of time of who will stay and who will be the one to walk the halls, the parking lot, drive the second car home. It never hurts less. As a parent it has to be okay to acknowledge that this stuff is freaking hard, especially when it feels like you are choosing one child over the other. Thank you for your honesty in sharing this. Makes me feel less alone as a mom.

  4. You can be nothing but honest, Jess. I get this. I totally get this. …and by the way, Katie was totally brilliant when we were there the second night and Brooke was happy at home. You did what you needed to do both nights. Sometimes, there’s just no way to know.

    Love you,
    Mom

  5. For me, it’s this: my daughter is my light, but my maternal instinct says to fight things that make my children feel terrible or threatened. Except…there is no enemy here, because my daughter is a beautiful and sacred autistic human being, so those feelings have nowhere to go. I just have to ride it out with her and hope and pray that until she’s old enough to take the reins (she’s almost four) that I’m the pilot she deserves, while knowing that because I’m human and imperfect that I’m not always going to be.

  6. Divide and conquer has been our motis operandi forever. And yes, I love my boy more than life itself but sometimes not being together as a family really sucks. You are not alone ((hugs)).

  7. Oh, darling’, sometimes you just don’t know what’s going to play out until the hurricane hits. I’m so so sorry for that painful experience, but so glad you had the next night’s success with a different plan. I’m sorry for Brooke’s pain and struggles and wish to hell there was a way to make it easier for her. For all of you.

  8. It’s ok to say it all sucks sometimes. There is no need to apologize. Sometimes, it’s hard and it sucks. You have had a lot going on lately and crying through all of that can wear you down. The most important thing is you get back up eventually. I think it is more than ok for the whole family not to be places. In fact my son might even be relieved to not be bracing himself for a brother meltdown while he’s on stage. Give yourself a break.

  9. Jess, not only is it ok to say it….you can shout it from the rooftops!! It is hard and there is no denying it. You’re a great mom and even great moms are entitled to have their own “meltdowns”! xoxo

  10. Thank you for sharing this. I was thinking sometimes it really sucks dealing with autism/bipolar/teenage angst….all the stuff that we wish we could make easier for our kids. I was so thankful to hear there was a second night of the show.

  11. Wow, that gave me a good cleansing cry this morning. Guess I needed that. To hear that. And to say I understand that. I have a child with Down syndrome, so tho I know nothing about Autism 1st hand (& some have told me they are about as opposite as they can be..Ok, maybe) but I DO know what having a Plan A, Plan B & Plan C in tact only to realize we needed a Plan D. I know the exhaustion, the fear, the joy, the love & the protection. The wishing that every single thing would come as 2nd nature to him.. not always with such learning involved. I know when we have to say “No, thats not something we as a family can do” & get clouded looks or reactions from friends that dont understand. And yet I know I love him so very much I wouldnt change a hair on his head. This is a Like = I get this moment! xoxo

  12. Don’t you dare feel guilty for any of it. I get it. It’s hard to be Mama to both. It’s hard to be torn in two all the time. I get it. You rest and know…I get it.

  13. As usual, you said it perfectly. I have felt this pain too, and it is incredibly hard. There are rarely words to describe just how painful it is, for everyone in the family. Saying that it is hard and unfair and so terribly painful only makes you honest and sincere. *hugs*

  14. Totally, totally get it, of course. Your plan for the future is brilliant, and how wonderful that you have a friend who can do that. I know I am a lucky, lucky mom in that my Jacob is a sensory seeker, so 99% of the time he actually is OK in noisy crowds, and loves loud music. Hugs to you all.

  15. Thank you. For being honest. For reminding us all that as poignantly sweet as autism can make seemingly small things (the “look at me!” the “hi granddad!”), so can autism make seemingly mundane or easy things incredibly hard. We spend our life avoiding those hard things (kids’ concerts, restaurants, fairs at the mall, long drives) and we only remember how circumscribed our life is when we attempt one.

    It’s $&@/!-ing hard sometimes. I’m here. I hear.

    Hugs.

  16. I’ve been reading your blog since September when my not even 2 year old daughter was diagnosed. It’s the ONLY “autism” blog I read. Because it’s real. Because I admire your strength as a mom, as a family, and because you are not afraid to try. Do you know how huge that is? That you try, you try to give Brooke the same experience any child would have, even if it fails, you try. And to me, that is HUGE! You are such an inspiration to me as a mom, Brooke is an inspiration and gives me such hope for my baby girl, Katie as an amazing big sister(i have an older son who I worry about every day how he will feel about his little sister as they get older), and Luau for being an amazing, supportive husband and father. But most of all, your family is an inspiration because you try, despite what the outcome might be, you try.

  17. This is one of the hardest parts of living with Autism. One one hand, new experiences can be very beneficial for the child with Autism but it often takes many of the same new experiences for them to become successful. In our house, James doesn’t go to concerts or other special activities his sister is involved in because it is her night. We don’t even give him the option. Last year, she was in the school musical~ West Side Story. I knew he would love it because he knows the music and loved it. I contacted the director and asked if we could come to a dress rehearsal and it was an amazing experience for James. He was allowed to lie on the floor, stand up and walk around. The kids on stage enjoyed having a practice audience and James told the director after that it was a “bad” play but he liked it. The director looked a little worried and I helped James explain what he meant. It was “bad” because people died.

    We have also done the bring someone with us as a back up especially to movies. Works well! PEACE

  18. It does fucking suck. My throat is swollen with the urge to cry because I know the exact feelings you have. It’s rarely easy but we always just move forward because this is what we have to do to survive. But there is always a scar no matter how we try to forget the tough times. Hang in there. We’ve all have your back.

  19. Oh it’s more than OK to say it. For me an F bomb can be more soothing than a tall glass of wine and that’s saying a lot. I’m crying full on tears over this post. I’m sure others are as well since we’ve all been there – in the school play audience no less – and nothing sucks more. Ok some things suck more. Ok the moments all suck. F! Is right. Xo

  20. I am so sorry this was so wrenching. I could feel it completely in your words here. It is always so hard to balance needs of all the individuals in a family, especially when those needs conflict. Which is all just a fancy way of saying, I get it and I love you.

  21. At some point all parents must feel this way, so if you pretended like you didn’t (by not posting this) how would they know they’re not alone with these feelings? I started to think, “I hate that you have to add these notes to stave off criticism, as if anyone would think you forced Brooke to go!” but then I realized that you learned from this experience, formulated a plan, and are sharing it with others so they’ll know in advance how to handle a similar situation. I’m so sorry you went through it, but I’m very happy you shared.

  22. tears rolled down my eyes reading this!! sadly i understand this so well! missed baseball games having to leave amusment parks early even the disney on ice she didnt get to see it all. so many times ive cried for her for her brother for everyone!! ill can do is send u lots of hugs and tell u u r not alone…i wish there was some magical solution that would make this rollercoaster easier for everyone! HUGS!!

  23. Couldn’t have stated it with more love felt if you tried!! It’s hard, really, really hard. We get it…… Sadly, happily and with love… WE GET IT!! Hugs and big congratulations to your Katie on her performance!

  24. Both children are brilliant in their OWN ways…. And Yes, it is hard… and you handled it with love and respect for both daughters. The great news is that Luau is your partner in all of this, and you didn’t/don’t have to travel this journey alone.

    BLESSINGS today!

  25. THANK YOU! THANK YOU! I am the mom of three beautiful children whom suffer the effects of their birth parents’ choice to abuse drugs and alcohol. I love every fiber of these girls! I HATE that it is so hard for them to deal with the world as it is. I understand that the FASD, ASD, PDD-NOS, and whatever other alphabet soup gets thrown in the mix is part of who they are, but it is HARD! Thank you for saying is your beautifully written word that a)it is hard and b) it’s ok to say that it is hard.

    Blessings to you and your family. You are a gift to me.

  26. I’m impressed that she wanted to try. My N doesn’t and won’t. Hasn’t seen his sister in any of her high-school plays these past two years. Even sits out in the lobby at the theatre we frequently frequent. (It’s small, and owned and run by two good friends, so we know it’s OK that he not come in, especially since his constant moving and going to the bathroom etc would be obvious and really really intrusive.)

    It makes me so angry. Not at him. Just angry. So I get it.

    I will note what a friend of mine has said to me so very many times: These things hurt you (me, us) more than they hurt the people for whom we feel so badly. My heart breaks for my daughter, not having her brother there, and thus not having her mom and dad there together. She says, only, “Hey, how about I show him just the parts I’m in when I get the DVD? He wouldn’t enjoy the whole play, anyway.” My heart breaks for him, not getting to broaden his horizons and see live performances. He says, only, “It will be too loud, and I won’t want to sit that long. Can we bring my DVD player and The Mummy?” All that heartbreak, and I’m the only one who really, truly feels like there’s a loss. For everyone else, it’s just what it is, and they’re fine with it. Not broken, like me.

  27. My 4 yr old has smith magenis syndrome when she was diagnosed at 6 mths old the only thing drs could tell us was its like a violent autism and reading this made me feel like I was reading about my life! Thank you for posting this I have that feeling everyday that for just one day I wish my daughter could experience a normal life bc it just isn’t fair how much she must indure on a daily basis!

  28. I have been “there” more times than I would like. The balance is hard. The planning is hard. The keeping it all together is hard. It is OK to be frustrated and angry. It is a part of this ride. Hugs and heaps of understanding.

  29. As usual, you have found a way to express what I am feeling… this time, it was at the moment I was feeling it as well. So, of course, I am a puddle. The last few days have been the culmination of a tough year and I went one meltdown over the limit. I melted, my frustration bubbled over along with all the anger… Why can’t I find a way for him to “tell” me what’s wrong? I’m the one after 19 years who knows him the best. I should be able to figure this out! Why can’t I figure this out!? I still don’t know what to do about it all, but I will do my best to try and take steps in a positive direction by making a phone call to an augmentative communication expert. I want to give a voice to his frustration so I can help him.. Not being able to help him is killing me!

  30. Jess, I love your blog, it is so honest and true, such a real portrait of life with autism. My brother’s 12 year old son is autistic, and he’s brought so much awareness and reflection into my life–how to see things in a different way and how to meet him where he is and not impose my world view on him. I love him so much, and so do my kids, and I try very hard to understand my brother’s experience as a parent — your blog really helps. Thank you. Much love, Anna

  31. Your words as always full of truth…..so honest. I am sorry that it was such a painful night…..all I can say is I get it….I really do….and I thank you for saying that it s#cks sometimes…..because it does….and that is just the truth. I thank you for speaking it.

  32. So sorry that what should have been a night of pure joy was tinged with so much sadness. You are always entitled to your feelings (hell, on some days, that’s all we’ve got left). The most important thing from that evening is that both girls’ needs were met, and that’s no easy task. Hang in there, I hope situations like this will improve with all the progress Brooke has made lately!

  33. I discovered you last month and cannot stop reading… you put in words what so many of us dont know how to….today specially, i cannot tell you how many times i felt exactly the same way…i struggle every single day on how to approach a unique situation….one day my son who is 9, will need to face the world by himself, one day i wont be here….that is my greatest fear!!! Thanks for your effort and energy!!! Mariana (Washington DC)

  34. God Bless you for sharing your feelings here. I know that many will find themselves and their struggles in your story and feel less alone, will gain strength from your planning and learning, and will find they are able to take two steps forward because of you! I do not experience the struggles of autism, but have experienced similar struggles with my ADHD boy when he was younger, and remember being tired, and being tired of being tired, and being tired of the struggle, the repetitive cycles of trying and failing to structure the world to meet his needs, and of ignoring the needs of others and myself. Its ok to rail against it all once in a while. You don’t always have to be strong – those who do so too long on their own are bound to break. Glad you have a family friend who is going to pitch in and be a part of the solution in the future.

  35. I won’t reiterate what all the other commentors have written, just know: Ditto to much of it.

    My daughter is 8 and on the spectrum (PDD-NOS). She had a hard time sitting in a theater for a long time too. We slowly acclimated her by taking her to a cartoon movie in a theater. At first we were lucky to last half way through -with popcorn!, but slowly we got her to stay throughout. We also acclimated her to the noise and such at home by cranking up the volume when listening to music and watching TV.

    As for the sitting still and not asking too many questions, we usually sit towards the back -but I know that’s not good for you since you want to be up front seeing your eldest. But what has helped my daughter to buy more time in the theater is to chew gum. She gets sensory feedback through the jaw so her body, while she can’t move as much, still gets some movement. Does Brooke chew gum?

    Hang in there, you can’t blame yourself. I know it’s not fair for Katie, but perhaps y’all can think of it this way: Instead of it being about Brooke leaving and having only a part of the family there to watch Katie, it could be that Brooke stayed for a part of it! And she was present during that time. 🙂

  36. For over 2years we treated our daughter’s meltdowns as a behavior problem. Needless to say nothing worked. It wasn’t until she turned 4 ½ that we realized there was something more to this than behavior. It’s exhausting, but you get it. You always have. Your daughter is blessed to have you.

  37. Totally understand where you are coming from, for both your girls. But remember that Brooke did this for Katie as much as you and Luau did what you had to for Brooke and Katie, to make the best outcome possible. Brooke got to see her big sister on stage for half the play!!!!!! There are neurotypicals that can’t do that and Brooke did!!!! You all did wonderfully. Katie got to have her WHOLE family there for half the show! And both her parents and grandparents for the other show. That is huge! And she knows, because she is a wise young soul. Cry and shout when you need to, we are all here for you.

  38. Jess, you did everything you could have possibly done. I too believe in the restorative power of a few F bombs here and there.

  39. I get it Jess. I think most of us here do. Saturday, was amazing. I was glowing in my girls presence. Sunday, we crashed. Words weren’t available. And I spent a good part of my day being an ABA therapist. It’s beautiful, and it can suck.

  40. So glad that you and Luau were able to sit through the entire play together the following night.
    Your solutions for the future are excellent IMO.

  41. School musicals were a contributing factor to Ben’s downward spiral in elementary school. He loved to sing, but couldn’t keep up with the pace of the songs. Then put all the kids in the gym and the sensory overload was just too much. By the end of 4th grade, he ended up in a sped school. At 5th grade conferences, the music teacher told me that she was planning on having Ben sing a solo at the Christmas concert. I said, “You’re kidding, right?” I told her that he had never even sat through a whole school concert, much less participated. But I agreed that she could try it, as long as she was prepared and had a backup plan. When it came time for the dress rehearsal, he panicked and wouldn’t go out on stage. We talked and we practiced, and we coached. I told him that everyone there was rooting for him and wanted him to do well, but that there was no pressure. I told him stories about my 6th grade concert where I completely blew my trumpet solo, but everyone clapped anyway. The day of the concert, he stood on that stage and sang his solo. He got lost partway through and missed a few words, but it was the most beautiful thing I ever heard. I cried. His dad cried. His teacher cried. My parents cried. There is hope. It will get better. He’s in 11th grade now. We leave him home for his older brother’s band concerts because they are still too loud. But last week, we took him to see a friend’s production of Hamlet. He loved it! 🙂

  42. Oh my god. This is ME. Someone understands my hell!!!! I cried, I’m crying now. Wow. I’m in shock that there is understanding out there of what I deal with.

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