put me in coach

*

I swear I’m not going to start putting up slide shows all the time.

Really, I promise.

But well, for the life of me I couldn’t figure out how to narrow down the photos from the other night, so I’m doing it just one more time.

It all started when Liz Feld asked if I thought that the girls would enjoy attending a Red Sox batting practice – maybe even sitting in the dugout, getting to meet some of the players.

I thought of my girls. Katie, I knew, would be over the moon simply to step on the field. Her sister, however? Well, perhaps not so much. But, there was something …

I answered honestly – Katie would be in for the whole kit and kaboodle. It would mean the world to her. And her sister would kill to meet Wally.

To the uninitiated, Wally the Green Monster is the Red Sox mascot. As you might recall, Brooke is a character girl. She loves her some random dudes in big costumes. And Wally? Well, he’s a legend around these parts. So I told Liz that if Brooke could get a chance to meet Wally, we were in.

And then I went home. And freaked out.

I thought maybe I should call Liz and tell her that I really appreciated the offer, but that she should really give the opportunity to some nine year-old kid out there who lives for the Red Sox – who knows every stat back to the seventies, who could tell each and every player his batting average and history in the big leagues.

And then I thought maybe I shouldn’t take her up on it because, as she (and everyone else who reads Diary) knows, though I think they do a LOT of amazing work, much of which they don’t get credit for, and though they have begun a number of initiatives to make themselves more representative of the whole of our community, I also I don’t endorse a whole lot of what Autism Speaks does.

Hell, I even felt guilty about letting Katie reap a ‘reward’ simply because she happens to have an autistic sister.

Yup, no one can over think a situation like an autism mom.

But then I mentioned it to Katie. Her eyes lit up. She jumped up and down. She may even have squealed a little, which is usually her sister’s domain. I was toast.

And so we went.

Katie had the time of her life. She met players, helped sort their batting helmets and gleefully told the equipment manager that everything smelled like baseball player sweat. She got a ball to keep and even scored an extra one that she gave to a kid in the stands. She beamed throughout the entire experience.

Brooke struggled. The early part of the evening was tough. Batting practice held no interest for her. It was hot. Really hot. Sitting on the bat kid bench in the dugout was torture. She lasted about three minutes there, two and half of which she spent crying. She said she wanted to go home again and again. But she didn’t. Because she knew what was coming.

As soon as we’d gathered on the field for the opening ceremonies (a full two hours after we’d arrived at the ballpark), the sky opened. Before we could blink, the Red Sox ambassadors had corralled us and shuttled us down the stairs into the concourse and into a holding room. We were told that the rain was expected to pass, so we’d be kept in the room for an undetermined amount of time while we waited for word from the weather folks.

So, to recap – kid at wit’s end, asking to go home, small room filled wall to wall with people, outcome unknown. I haven’t read Dante in a while, but I’m fairly certain that this was how he described the third ring of Autism Hell. I feared the worst.

Brooke shocked me. She was amazing. Beyond amazing. She watched Blue’s Clues in Spanish on my phone. She initiated scripts and I eagerly went along for the ride. We got silly. She cried, but we laughed far, far more than she cried. She was a superstar. Until about forty minutes later, when she declared that she was done.

“We would go out now,” she announced. I had no idea where we would go, but one way or the other, we’d go somewhere. It was just too much to ask of her to stay.

I took her to the door and told her that we’d go stand right outside the room, but that we weren’t allowed to go far. I explained that this was a special place at Fenway and that we had to stay close. She agreed. At that point, I think she would have said anything just to get out of that room.

As soon as we opened the door, she saw him. She screamed his name and began to run toward him at full speed.

I called her back. “Honey, I don’t think we can go there. Wait a minute, ok?”

She bounced on her toes and flexed her fingers. Her entire body vibrated. If she were a cartoon, her hair would have been standing on end.

One of the bat girls who was standing with him leaned over to him and said something. She’d been the one hanging out with us on the field. She knew what Brooke was there for.

He curled a giant green finger in invitation. She paused for a split second, confused.

“It’s ok, baby,” I said, “he’s telling you to come over.”

As fast as her little legs could take her, she sprinted toward his open arms.

I have never been so grateful to have had my phone in my hand. I snapped pictures as fast as I could. They’re in the slide show. You’ll see them all. They danced. She asked him if he was a banana. They played Follow the Leader. “Wally, put your hands on your tummy.” He obliged.  Wally can you sit down?” He did his best. My girl and Wally. Alone. No kids waiting in line for their turn, no babies crying, nothing. Just my girl and Wally. She never stopped smiling.

A few minutes later, the rain ebbed and we finally managed to get onto the field for the ceremonies. The girls had more time with Wally. They waved to the crowd. Their names were announced. They saw themselves on the Jumbotron.

By the time someone yelled, “Play Ball!” Brooke was toast. She and I headed home before the first pitch, leaving Katie and Daddy to enjoy the game. They had a blast. And in our own way, so did we. The parking lot where we’d left the car had flooded. Brooke couldn’t have been happier to wade through six inches of water to get to the car. “It’s a river!” she exclaimed.

Driving home, I still had a nagging feeling of guilt. It was quieter now, stifled somewhat by my children’s unadulterated joy, but I still wondered if I’d done the right thing accepting all of it.

I got home and posted a picture on my Facebook page. Friends and family were thrilled for the girls. One acquaintance had a question. “My kid loves the Sox. Got an in?”

I was exhausted. It was nearly 10pm. I’d been tap dancing since 4:00. My filters were off.

“An in?” I thought. “Sure, I have an in. Work your ass off. Be an advocate at every possible opportunity. Have hard conversations. Say stupid things publicly, get shredded for them and then tell everyone what you’ve learned afterward. Go to DC. Tell them what you’ve learned too. Be so visible and so tenacious that administrators and legislators and foundation heads can’t avoid you. Compose e-mails in the middle of the night to try to help guide an imperfect organization that you desperately believe can be – and will be – better if you, and millions of others, don’t give up on them. Have heart-wrenching conversations with autistic self-advocates. Facilitate other conversations – the ones with the people who need to hear from them, not you. When everyone raises a fist to the mysterious “They” and says, “Someone needs to …” be the someone who does. Do something. There’s your in.”

My reaction shocked me. I’m not usually one for self-righteousness and I’m never one for entitlement. But in that one moment, I was feeling just a little of both.

I looked over at my sweet girl. Even though it was nearly an hour past her bedtime, I was letting her decompress with some Dora al Rescado. Her official batting practice ball was tucked in next to her on her chair. She looked exhausted, but she was still smiling.

And just like that, all the guilt and all the self-doubt went up in smoke.

My girls deserved that night. Brooke, who works so God damned hard every day, deserved it. Katie, who stands guard and takes on all comers, proving her love for her sister bigger than her own fear of rejection, deserved it. And hell, ya know what? Luau and I deserved it too.

Now don’t get me wrong. I’m even going to highlight the next sentence just to make sure you don’t miss it, because this part is really important.

Our kids did not and do not deserve this any more than any other kid in the world did or does. And if I were Queen of the World, every single kid who wanted to would have the chance to do this kind of thing.

But this time, Mama happened to have an in.

And that’s ok.

I took the hair shirt off and took us up to bed.

So …

If I haven’t lost you all by now, here they are – the pictures. And I really do promise this will be the last slide show for a while. At around 2:23 you can see Katie heading into the stands to give her extra ball to a kid who she thought would like to have it. His reaction in the next couple of shots is priceless.

So here we go.

Play Ball!!

~

Ed note: Our endless gratitude to the folks at Autism Speaks for including us in this magical night – and for continuing to have the tough conversations. Thank you to Larry Cancro, Bobby Valentine and the entire Red Sox organization for their consistent support of our community and for hosting Autism Awareness night year after year. Thank you to the Red Sox ambassadors, bat girls and field staff who understood why I had to ask them to bend so many of their on-field rules and who so generously agreed to let us do what we needed to do in order to keep my daughter comfortable and safe. Thank you to the players, coaches and staff who took the time not just to sign Katie’s shirt, but to chat with her in the dugout and to make her feel important and special. Above all, thanks to the guy in the big green monster suit who made memories for my kid that neither she nor her mama will ever, ever forget.

45 thoughts on “put me in coach

  1. This was an unbelievable story from beginning to end and the video is spectacular! …and you all deserved it–no contest!

    Love you,
    Mom

  2. what a wonderful experience for your whole family! brooke and katie are both beaming, and i love katie’s protective arm around her sister.

  3. (and I had a prob w/the vid when I tried to watch it when I was still in my email but when I went directly to your site/post, it worked fine. Unfortunately I have to get to work so can’t watch the whole darn thing …… something to look forward to for later!)

  4. You could make a video of your beautiful family everyday and I would watch happily. The beauty inside of those 2 precious girls shines all the way through and your writing always captures it with the most glorious detail. Absolutely you all deserve all the special moments whether or not you have an “in”.

  5. I Heart the puzzle piece foam sign! Awesome! I’m so glad the girls enjoyed, and I’m glad you realized just how much you ALL deserved it, for you hard work, your voice, your dedication…to Advocacy yes, but more important, to each other.

  6. I’m glad Brooke got to see Wally. That would have been a highlight for my kid too (except it would be to do that with Southpaw of the White Sox). I have a question about the person questioning about the “in”. Was this person saying “my kid who has autism loves the sox, do you have an in?” or were they saying “my NT kid loves the sox, do you have an in?”. Some of us are not as well spoken as the next, are not ones to be the leaders but who actually do our part as best we can telling the one person in the grocery store about why their boy is doing what the are doing. Some of us just can’t write blogs, aren’t writers, aren’t speakers, but we do love our kids and want the same things for them. I’d love an “in” to go the game. Hell I’d love my kid to be in the dugout! But I don’t have the gift you have. I can’t write a blog that is as eloquent as yours. I just can’t. But I can love my kid and I can tell as many people that I can in my neighborhood. In my school. At my book club. I just wanted to say we all don’t just want it handed to us, and I know you’ve worked HARD for these things. We just want our kids to enjoy what they obsess about also. So we buy a ticket and we sit in the stands. And we stand in line for the character. Sometimes we make it sometimes not. Most times we leave early. I love your blog and I love what you do. But some of us just can’t do what you do. So thankfully, you can!! And we appreciate it.

  7. I don’t know why you apologize for your slideshows, they make my day! The utter joy you catch with the camera is amazing. I think you missed your calling. If you ever decide to change your occupation, I would hire you in a second to chronicle my family’s life. I loved this!

  8. Pingback: It’s the Logistics « Pucks and Puzzle Pieces

  9. A VERY WELL-DESERVED outing for your family!!! AND, It’s okay to take your filters off more often… (Feeling chatty today.)

  10. That looked like so much fun (yes, I read the whole thing!). Fenway is my favorite baseball stadium too. I’m going to be smiling all day just thinking of your post. 🙂

  11. You can post a slideshow everyday if you wish! I’m a picture taking/looking type of gal!! I live in Houston and the Astros have autism friendly room for a game or two during season. My Ainsley is fine during regular games as long as cotton candy and the play area are involved! And yes, you all deserved this special,wonderfully joyful time together!!!!

  12. Jess,
    I am a relative newcomer to your blog and also being an autism mom I enjoy it immensely. I have to admit I saw a picture of Brooke on the Autism speaks Facebook page and as an avid Six fan knew about the coming awareness night… So when I saw those two things come together I knew there would be a post and have been anxiously awaiting it. You, as usual did not disappoint. Thank you.

  13. You all deserved that beautiful night! You bust your butt everyday….to get through a day and find time to be an amazing advocate for Brooke and all our kids!!! Tears of joy for you guys……beautiful pics as always!!

  14. Bawling my eyes out here over the post, the slideshow, everything. The Wally part certainly got the tears flowing. So happy for BOTH girls. Please oh please dont deny us more pictures/videos/slideshows – they speak volumes sometimes and they are SO moving! And for the record, if my fav line isnt “no one can over think a situation like an autism mom” (so damn true), it’s definitely “She loves her some random dudes in big costumes” LOL!

  15. This is sooo beautiful, Jess! That night was as much about Katie – and you and Luau – as it was about Brooke. Thank you for all you do. You have taught me so much.

  16. LOVED this post. I just recently stubbled upon your blog last week. And every post I’ve read has moved me to tears. You are a great writer and take amazing photos. Keep the slideshows coming! I look forward to reading more posts, and I’m sure they will help put a pep in my step on those days I just want to scream AUTISM SUCKS!

  17. Jess, I thank you often for your wonderful writing. Your knack for writing just the right thing at just the right time, for me and many others. But I rarely remember to tell you how thankful I am, from all the way up here in Canada, that there is a voice – your voice – for our kids out there on the big, visible, watched, copied, emulated stage that is the States.

    Thank you. For your tireless efforts.

    And for the record, and “in” is definitely something you didn’t earn; an “in” is a friend, family member or co-worker who slides you past the bouncer and into your favourite club. You were “invited”; that is vastly different from an “in”. Enjoy your well-earned invitations.xo

  18. Love your slideshows!! At the end I went back to 2:49-2:50 and hit pause, just to soak up some more of the pure joy, wonder, and excitement in her eyes there.

    I feel like I’m going way out on a limb here because I little knowledge and even less personal experience with autism. But, I wondered as I read this whether Brooke “loves her some random dudes in big costumes” because of their exaggerated miming being easier for her to “read”, compared to having to put together a facial expression, subtler gestures, word choice and tone of voice, etc., etc., etc. *all at once* to “read” a person who’s talking to her.

  19. When you share these celebrations, I celebrate with you. Thank you for sharing your joy. I know there are heartaches (and thank you for sharing these as well). Our own heartaches are eased when you post and we remember our own joy and our own miracles as you celebrate.

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