Monday, October 10, 2011

On centering your life around your child (and not centering your life around your child)

We decide to go on a ferry ride
Last summer, we went on a car ferry ride and Max loved it. For weeks after, he asked whether we could once again drive our car onto a boat. Repeating activities that Max enjoyed are more of a sure thing in our life; when we try new stuff, there's always a chance he will get freaked out by crowds or noise or something. Sure enough, Max gets giddy when we pull into the ferry cue and squeals when he sees the ship pulling in. On the boat, he sits down long enough to enjoy some chocolate ice-cream, then does laps around the deck with Dave as Sabrina and I hang out in the lounge.
It's a good ride except toward the end, when the ferry is about to dock. Max and Dave are nowhere to be found and Sabrina and I are standing in a sea of cars, a little freaked. Finally Dave and Max show up. Turns out that Max and Dave had been hanging out on a bus. The driver had invited Max on, and Dave didn't realize it was time to go.

We go to a crafts fair
There's a little festival going on in the town where the ferry lets us off. We hit a crafts fair, but within five minutes Max books out of there. Dave goes with him; Sabrina and I finish walking around and meet up with them.

We hang out in front of a sign for 10 minutes
Max liked this "Open" sign in front of a store because of the purple flap. And because it spun.

We listen to music
We head over to the waterfront, and come upon a woman singing kids' songs standing next to a giant tadpole. It's not totally clear on why someone is dressed up as a humongous tadpole, but it's nice music and free. Sabrina settles down to listen. Max is cracking up at the tadpole and listening, and I am psyched. Five minutes later, he's done. I follow him out of the area and we go and explore a boat docked nearby as Dave stays with Sabrina. "I used to be a special ed teacher," some guy on the boat says to me. Very often when we're out, special ed teachers say hi to us.

We eat in the car
I'd like to go to a restaurant for lunch, but the day's been good so far and we are not up for the potential drama; Max is wary of restaurants he's never been to. We hit a drive-thru and down salads and burgers.

We visit an outlet center
Shopping is definitely not the kids' idea of a good time, and when they're with me, it usually isn't mine, either. But the siren call of the Crocs store is strong. Sabrina gets navy blue ones. I show Max some purple Crocs; I've previously vetoed them but now I decide that, heck, if Max wants them, he gets them. Inexplicably, he falls in love with a men's size 12 pair of white canvas shoes.
He wants to color them purple. The child size won't do, because there is so much less shoe to color on. He clomps around the store in them. People are amused. I am, too, until I lift him out of them and Max has a fit, which includes plopping himself down on the floor and crawling around it in protest. We haul him out of there screeching.

We go on kiddie rides
There's no choice but to conquer and divide, which is often where we end up. Dave and Sabrina head off to explore a few stores; I plop Max into a car ride and sit down a nearby bench. He's perfectly content. The afternoon sun feels nice on my face; I am tense from the Crocs store scene.

We go to a restaurant for dinner
We venture into an Italian place at around 4:30, before the crowds descend; Max looks dubious. The dining room is empty, but Max books through it and out the other side, to an area where people can pick up pizzas. It's chilly in there and not very nice-looking, but we settle in. I whip out Max's iPad from my bag and find some Cars videos, the Max equivalent of a sedative. It works, though it doesn't always. Max has spaghetti (shocker), Sabrina has mac and cheese, Dave and I devour an antipasto and a really good chicken and artichokes dish. We breathe a sigh of relief; dinner success!

We head home
Max plays video games for most of the ride back, and downs two chocolate milkshakes. Sabrina has a vanilla one, and we color. When we all get back in the car at the end of the ride, Max says, "Nooooooo!" He'd like to sleep on the boat, and could he? We cruise off it to the sound of him saying "Nooooooo!" I tell him, "We'll go back on the boat soon, honey. We'll go back." And he calms down.

As much as we try not to center our lives around Max's needs, often, there's no getting around them. So we reconsider and let go and divide up and compromise and give in, on occasion. And that's just the way it is—for now, anyway.


  1. Hey Ellen,

    I know Max needs more attention because he has CP but please don't forget Sabrina I feel like my siblings although they love me also resent me because my parents' lives revolve around my needs.

    Yours truly,

  2. Really appreciate this! Trying to explain how life is affected by Mikey is hard and so often makes us sound like push-overs. But he's rigid so the rest of us have to be a little more flexible! This sounds like an incredibly successful day out - I'm seriously impressed and hopeful that we might manage something similar one of these days! X

  3. I think one of my fatal flaws is the inability to accept when to temper my expectations for outings. I don't even think it's necessarily a special needs thing, more just a parenting thing. I tend to get set on a certain activity we WILL! DO! And we will HAVE! FUN! And honestly I am sometimes so stubborn that I will insist that we go to the restaurant (or whatever it is) when it will almost certainly be a disaster. I always feel like it's a fine balance figuring out how to continue to do the things you enjoyed pre-kid but also know when to throw in the towel. Sounds like you're a little further along in that journey :)

  4. Love how you handled this topic. It's hard to balance things, and we never meet every need. But I read something in Time Magazine (it was about picking favorites among your kids, but i think it applies here): "Even if your kids know you have a favorite (or, in our case, a kid you have to spend more time/energy on) the effort it takes to pretend it's not so can itself be an act of love." :) Here's to hoping your Sabrina and my 2 sibs to special needs kids know how much we love them!

  5. I think what you are trying to say is you want to meet the needs of your children but not have your life centered around them. One of the differences is having your plans before you leave. Knowing when you might need to change plans. Knowing where there will be no comprimise. Also knowing when you want to give in. Sounds like you did and the result was a good time by all :-)

  6. My oldest was 'rigid' (like Alice said) too, but thank heaven he finally has (pretty much) outgrown it. He used to melt down at the worst times, and he's HUGE so it wasn't "Aww, cute widdo kid having a tantrum" it was Scary Angry Baby Huey (who would HIT) on the rampage! I used to leave half full shopping carts, wrap up food in the placemat, that kind of thing, and just get him outta there. It was so disheartening. One day, though, it was like a light bulb went off with him--meltdowns equals we're going home--no ifs, ands or buts (because that is how I played it). Of course, that only works if you're never too far from home, I guess. Also, my youngest started getting pissed off about the bouts of chaos and he applied some serious peer pressure, and that helped nip it in the bud. I won't minimize, here, it took a long time but it finally resolved. Now the worst I get is a whine, and I can tell him that if he keeps it up we'll just have to go home. That said, fine dining is out--about the finest dining we get are the nice booths in the back of the diner!

    Have you tried videoing places you would like to go and showing them to Max, and verbally trying to put him in the picture? Or, if you're going to Disney or something popular like that, going on YOUTUBE and finding videos of your destination and "warming him up?" Maybe you will have to do it a LOT, early and often, but it might help him get over the "Oh sh!t this is all new-I can't process it all!" feeling that accompanies a new place followed by one of those melt-n-bolt events.

    Like I said though, we stick pretty close to home, we have routines (outside to play after school unless it is too cold/raining--run around and get tired, same lakeside vacation every year, helping Gramps on the weekend, either around the yard or going fishing or repairing stuff around the house, for example) so we don't have so much of the "drama of the new" to deal with. I don't know how my oldest would do, say, on an airplane or in a big city. It might freak him out.

  7. That is such a familiar story - swap some details and that is us. We don't do everything for Haley or because of Haley, but if we didn't consider her or rearrange for her our lives would be unbearable.

    I get you.

  8. This whole balance of centering or not centering our life around our son's disability has been something we've been dealing with a lot lately! He's a spicy, feisty, gorgeous, funny, heart melting, easily over stimulated 4 yr old boy with the double whammy of Down Syndrome and Autism. We never know how Paolo is going to handle a social outing but we've decided to not let it scare us from living life. The down side is that even if he is doing well it's hard to enjoy it because our nerves are on high alert for a meltdown. On the upside we had two major successes which I believe is due to the constant exposure.
    I just took Paolo with my mom to Hawaii for 10 days! My husband thought I was INSANE!!! The 5 1/2 hr plane ride was hell but I learned what his triggers were (i always pay attention now!) and on our flight home I made changes that I could and he sat like an angel the whole way, not a peep! I was disappointed that he didn't like the pool and water as he normally does but I realized I was imparting my own expectations on him and he actually was having a blast out of the water! He loved watching me swim and people watching so he did have a great pool experience, his own way. As part of his therapy we go to restaurants at least twice a week to help him process all the sounds. It really paid off on vacation because we ate out everyday!
    My other proud moment was that we went out to dinner last night and he freaked! Not proud of that but I was so proud at how he handled it. My son is nonverbal and really still very baby like, he's developmentally at about 18 months so it's really hard for us to know how much he knows sometimes. Anyway, I knew we were in trouble when the waitstaff came to the table next to us singing and clapping (very loudly) for someone's birthday celebration. Paolo immediately looked at us in terror and just started screaming. I immediately started rubbing his back and told him it would be all done (and signed it for him) really quick. He still cried until the song was over but he totally regained his composure and was able to work through it. In fact after that he couldn't keep his eyes off that table and the people thought he was just adorable and enjoyed interacting with him. In the past we would have had our food boxed up but I think the constant exposure has helped him:) We've also learned to feed him (if possible) before we go to a restaurant because it's hard for him to eat with all the stimulation. We bring his favorite yougurt and he has "dessert" with us. It's not perfect or easy but each time I feel we're a step closer to more positive experiences and hopefully I'll relax more and just enjoy the moments...good or bad!

  9. I can relate to this! Like Jaida, I sometimes still try to plan for having typical kids, even a year after M's diagnosis. Take yesterday, for example. We knew we wanted to take the kids to a pumpkin patch. I knew to go mid evening, when it would be less crowded, but I wanted to go the patch we'd gone to when M was a baby. It has a maze! A train! A band! All kinds of fun things! And as my husband gently pointed out, it is also a recipe for sensory overload. So, we went to another place that's very small and now the least bit crowded. Not as exciting, but exactly what M needed to have a good time. :)

  10. I, too, have had a Croc buying episode that I would rather forget. I, too, wish that our time out didn't have to center around David, but that's the way it is for now. Sounds like you had a good and full day.

  11. You are such an amazing Mommy. I really love you, Ellen!! That is all...

  12. I have four kids, one with special needs. We have family outings which like yours can be a challenge. We also take the other kids out in ones and two's for a bit of quality time. We did this before our little man came along and just carried on after and with the arrival of number 4.
    Wise comments and great ideas from the guys above

  13. I absolutely love that he's standing. That alone gives me hope. I know that's not where you were going with this blog entry but I had to tell you that anyway.

  14. Nisha, I hear you but trust me, we give Sabrina plenty of attention. Sometimes, though, our life revolves around Max.

    Jaida, it took me a long time to get here and I still have overly high expectations sometimes, ones that only come back to bite me in the butt.

    Felicia, you were the genius who first suggested I show Max photos/videos of places we were going, and I have done that (well, when I get my act together and do it)! But the reality of being in a place can get to him.

    Kate: It takes one to know one. :)

    fivelittlekittens: ALWAYS have hope. We were told Max might never walk. And he does. He RUNS.

  15. I love reading your blog...found it on accident and now its a favorite.. have a 2 children with special needs and I can so relate to this post. My son Cameron has a progressive illness so even when I feel like I have a small handle on things, it changes. It is hard to juggle the other children and him at the same time without someone feeling short changed.. you seem like an amazing mom.. good luck to you

  16. Ellen,

    Do you give yourself enough attention, too? I know as a mom it's hard to think of yourself, but honestly, for your own sanity, try to make time for yourself. I am a single mom and have a special needs child, and I find that I'm a better mom when I'm a better Shelley.

    Keep up the good work!


Thanks for sharing!

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