Thursday, January 3, 2013

A special needs showdown with Max

It's the first night of the Disney Cruise, and I'm a little stressed. Max and I are in our cabin; we're supposed to meet Dave and Sabrina in one of the restaurants for dinner.

Last time we were on a cruise, Max refused to go out for breakfast, lunch or dinner. He had room service for every single meal, and he'd let me know he wanted to do that again. Only it's two and a half years later, Max has matured, and I want to try again. This time, I've come equipped with noise-blocking headphones for Max (but unfortunately, no Xanax for me).

"Max, we're going to go meet Daddy and Sabrina for dinner," I say.

"No!" says Max.

"OK, let's just try," I tell him, taking him by the hand.

We ride the elevator down and walk into the lovely Enchanted Garden, with it's lush flowery decor and twinkly star ceiling.

Max starts wailing, as if we are about to descend into the Inferno.

"Come on, Max!" I say. "They have lots of mac 'n cheese and ketchup!"

He wails louder. People are staring. I pull him to our seat, a corner booth I'd requested before the cruise began because Max feels more secure in corners.

Not this one, he doesn't. His wails grow louder. I sit him on my lap and give him a big hug. He slips out of my arms and onto the floor, and then he starts crawling toward the entrance. Families are looking a bit alarmed, as in, uh-oh, hope this kid isn't sitting near us.

I pick him up and sit back down. But he starts screeching, and with that, my resolve dissolves. I carry him out and we return to the room.

I am bummed. I just want all of us to enjoy dinner in the ship's nice restaurants, one of the pleasures of being on a cruise. And I know Max is capable of it.

I look at him. "Max," I say, "I am sad. Because I do not want to sit in the room to eat. I just don't. And Daddy and Sabrina don't."

And then I can't help it, tears spring to my eyes. When you have a kid with disabilities, family life often centers around their needs. You get used to it. You navigate. You deal. Every so often, though, waves of disappointment about a missed opportunity or mishap wash over you.

Max is startled; he can't stand it when I get upset.

"Nooooo eye!" he says, and he starts crying again. "Esss. Esss!" And he nods his head up and down.

He's telling me not to cry, and that yes, he will go to the restaurant.

"Really?" I ask. "You'll go to the restaurant?"

"Esss," he says, and kisses me.

Now I feel guilty. But, heck, we're going back.

And then: Max calmly walks into the restaurant, sits down in the booth and asks for chocolate milk, as if nothing ever happened. I am all, PINCH ME, I KNOW I'M ON THE DISNEY FANTASY BUT I MUST BE DREAMING.

Dave and Sabrina show up, and I tell Dave what happened. "He was totally playing his disability," Dave says, which is kind of true. Max has his sensory issues, but I have seen him push past them when he sets his mind to it. The tricky part is knowing when to stand my ground, and when to give in.

We had a nice dinner that night and a bunch more that week, including Pirates of the Caribbean Night. A couple of times, Max decided he wanted to have dinner in the kids' club, and that was cool. He'd broken through, and I'd gotten my fantasy.


  1. I LOVE this, because sometimes I do think you have to push your kids. It's part of what being a parent is all about. The hard thing is knowing when it's good pushing, and when it's you pushing because of unrealistic expectations of the way things are supposed to be. So glad he had a breakthrough!

  2. I love it too, I never know when I should push and not push. I like to count on my instincts at times like these but sometimes they fail me, ha! At my son's ABA school Christmas party, they had a Santa photo booth and this other family totally forced their son to sit with Santa and at first I thought they were crazy, why would they force him? What was the point? But of course by the time he was finished, he was smiling and laughing and hugging Santa and I thought well, what do I know? It's so challenging and I appreciate hearing a victory story! Yay!


  4. This is too sweet, and makes me teary. Glad he recognized he was playing you...
    He's adorable.

  5. Thank you so much for sharing this. It actually brought tears to my eyes. Hooray for Max! But I particularly appreciate you sharing your moment of disappointment.

  6. I love that he understood that you were sad and he wanted to make you happy. And then brushed the whole thing off with chocolate milk!

  7. What a remarkable boy you have... So nice to know that he wanted to make you happy! That's great that all your family got to enjoy the cruise restaurants together. Thanks for sharing! How wonderful! This story brought a happy tears!

  8. So it looks like Max is maturing emotionally as well as cognitively and linguistically--he let his concern for your feelings override his own preferences! What a guy! What would happen if the next time be balks at a restaurant, instead of beguiling him with tales of all the mac&cheese awaiting him, you said something like "Mommy and Daddy and Sabrina all want to eat there together with you, and we'll all be so sad if we can't do that"? Think it might work? After all, his empathy is genuine, and I bet he was proud he did the right thing and made the rest of the family happy.

  9. This story reminded me of that time you went to the play with Max (I believe it was a school field trip?), and you expected a meltdown, but he did just fine and enjoyed the play. I think Dave nailed it. I also think if you are confident and have realistic expectations, Max can continue to expand his experiences. Way to go, Max!!!

  10. I also think these kids are so rooted in their old habits that they forget that sometimes they have a choice, or that the habits no longer serve them. And as they get older there's nothing wrong with letting our kids know that we are humans with wants, needs and desires, too. Way to go, Mom - and way to go, Max!

  11. Tears here. Good for you both! It is so hard to know when to push for achievement and when to let them feel comfortable and safe. I'm glad you got some dinners out!

  12. Max max max u like to keep things interesting don't u. I do as well could be a CP thing

  13. yay! happy tears for you guys!

  14. I went through something similar a few years ago. Kind of a reversed scenario, though, where we'd leave a "fun" place, no delays, no excuses, no drama, if the behavior wasn't modulated.

    Well, now you know what to do!! Fun days ahead! Next step--start in with the whole concept of "taking turns"--everyone gets to do something they want to do, and everyone else goes along with it. He'll be accommodating to you, Dave and Sabrina...and he'll start having fun, too. When it's his turn to do what he wants, make sure he knows that he's getting his way.

    It's the unfamiliar that is frightening, the more familiar these things become, the more fun they will be. He's turned a corner, here. Great for you and the whole family!

  15. Ellen you look blissfully excited and rightly so. I am thrilled to read that your dream came true!!! Can you share some more cruise info like where you sailed etc? My kids are loving hearing about max and sabrinas adventures!

  16. Oh my word, I am in tears as I read this. I cannot tell you how uber happy I am that Max came around for you. What a breakthrough! Thank God! I hope this is the beginning of many more breakthroughs like this for you all. This made my day, honestly! Thank you for sharing this touching story with us. I love it so that Max had empathy or at least sympathy for you in this situation. He is definitely maturing in so many ways, and I couldn't be happier for what this means for your family.

  17. So awesome! My son is 10 yrs old and on the spectrum. In the last year or so we have started to tell him that only babies behave this way. It has really helped because he only wants to be a big boy

  18. That is so awesome I hope you get to enjoy the rest of your cruise

  19. I just love this story. Step by step we continue to make progress. Makes you appreciate all the hard work that goes into making our lives tick! Glad you had a nice cruise.


Thanks for sharing!

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