Tuesday, July 6, 2010

Independence Week

Well, it's back to reality today. Yipppeeeeeee. I don't think it's exaggerating to say the kids had the time of their lives on our beach vacation last week. We were at a resort on the Jersey shore, and we spent a lot of time hanging in the pools.

During our week off, I wanted the kids to really enjoy themselves, I wanted to relax, but more than anything, I wanted to work on something very important: encourage Max to do more stuff on his own. He's pretty codependent on us, more than he needs to be.

We got him a cute fish tube and he did a nice job kicking around in it. But this pool, with its mini geysers, was where he felt most comfortable. He's been obsessed with car washes lately, and he liked to pretend he was running his truck through the car wash.

On Tuesday, we visited Six Flags Great Adventure. Max climbed the stairs to this slide by himself (with Dave behind him just in case), then he went down alone. Score!

There was a fun little water area, where Max freely splashed around (geysers again!)...

...and a Wiggles section, too. We were over them as of a few years ago, but Max was still intrigued. At first, he refused to go on this ride. So Dave picked him up and plopped him into a car, anyway. And then, of course, Max wouldn't get off. He stayed on for seven rounds.

Sabrina enjoyed the ride too.

Max and Captain Feathersword. I think Max would make a fine pirate.

Hanging with Bugs and Daffy.

Both kids ate their body weight in ice-cream and shakes this week. Max fed himself on occasion, but likes it best when Dave feeds him.

One afternoon, Max and I went to the zoo together. There was a cute little train, and I bought us tickets for it. Only Max wailed when the time came to get on, so I returned them. He kept hovering around the train. I knew he wanted to ride it, but he had to push past his qualms. So I picked him up and carried him on. The whimpering instantly stopped. And when it was over, he asked to go on it again. See a pattern here?

Max especially loved miniature golf. He kept wanting Dave to help him swing, and Dave did, but we also made him try it himself.


Driving home, Dave and the kids sat in the back seat and pretended I was their chauffeur. "Driver, take me to DisneyWorld!" said Sabrina. "Driver, I'd like a beer!" said Dave. "ARRRR WAHH!" said Max ("CAR WASH!")

It was an excellent week. Max made some progress in terms of independence, but it's a long haul. For years, we have been doing, doing and doing yet more for him, and he's used to that. It's a fine line we walk as parents of kids with special needs, isn't it? Our kids depend on us for so many things. Yet if we don't push them, they won't achieve whatever independence they are capable of (Amalia over at Autisable just did an inspiring post on this).

Max is actually a lot more independent at school and with our babysitter than he is with us. At school, he'll use the potty. At home, he's been refusing (OMG, I have total potty despair). At home, he always walks down the stairs from our second to first floor with our babysitter, holding her hand and the rail. When he's with me, half the time he wants me to carry him.

How are your kids doing with the independence thing?


  1. Looks like Max and Sabrina had a great time. I'm glad you all enjoyed your time away so much and it's also great that Max was able to gain a bit of independence. I am dealing with the independence thing a lot myself right now. As a kid, my parents probably did more than they should have for me, but now they are finally letting go, I am enjoying finding my own way in the world, though growing up is not always fun. It has its challenges, but we all live and learn eh!

  2. Sophie can do SO MUCH more independently when I am not around. The best is when we had an IEP update meeting and she had mastered one of her goals...independently using her fork. Huh? What? She can use her fork by herself? She has me so fooled.

  3. I visit your blog first time it is so nice and interesting. My family watch your blog and like that.

  4. Bribe Max with a purple toilet seat!!!! That might persuade him! Put a few car stickers on the thing, too--whatever it takes!

    He's a smart kid...he knows he can get you guys to do stuff for him, so he lets you.

    It's difficult to go outside those comfort zones, though, isn't it?

  5. Looks like loads of fun times, Ellen! We struggle with independence here too. It's such a fine line, how do you walk it when you never have before. I feel very inadequate in this area.

  6. OK...this sounds so bad, but have you thought of faking an injury that would prevent you from doing things for him that you *know* he can do? Like "oh Max, Mommy has a sore back. I can't carry you down the steps today" or "my arm hurts so bad, can you try to feed yourself breakfast?"

    Years ago I dated a guy with spina bifida. He was the youngest of 8 or 9 kids, and babied like crazy. At 26 years old his family still did everything for him. At my house he was on his own, and learned to do things. His friends thought I was harsh when we went out places, but they quickly discovered that it made him more independent.

  7. We had a hard time with letting Gabe do things on his own-he got VERY used to us doing everything for him and it was an absolute PITA to try and get him to do anything on his own. Thank God we have an amazing pediatrician who gently but firmly told us it was time to "cut the cord" and let Gabe do things on his own. We ended up seeing a family counselor for a few sessions to help with letting Gabe do what he needs to do and encouraging him to get frustrated with things.

    It's hard to let him do things on his own; I hate seeing him struggle but I know for HIS own good I have to let him to these things on his own; I have to let him get frustrated and angry and even throw the occasional fit about doing something I would have done for him previously.

    Looks like you had a lovely time on vacation!!

  8. I loved the pics -- especially the one where you're the chauffeur!

    I don't have any great answers re the independence thing. We know Ben's capable of doing a lot more than he does with us.

    However, I also think independence is overrated and I'm sick and tired of the overfocus on it -- which leads to guilt in parents.

  9. Oh, boy, it IS a fine line, isn't it?! Charlie is giving hemo camp another try this summer. I think this will go a long way towards self-reliance. But otherwise, like Max, he will try the path of least resistance if he know he can get away with it.

  10. Way to go Max!!! You guys seem to know just what to do for Max. It is not easy when a child seems to show a hesitancy towards doing something - do you try to encourage them to do it or just give in. Try to show him that he can be independent even when you are there. So glad you all had such a great vacation.

  11. Oh we have been working this issue too! Kate just turned 9, so I say things like "Thanks for finding your own shoes, that was a very 9 year old thing to do." or "I think that's a reasonable thing for a 9 year old to do for herself." Instead of yelling "I need a napkin!" I'm not even saying anymore "Say please" I'm saying "Well you should go get yourself one." And I'm teaching her how to push the buttons on her insulin pump. Very huge. Kate has Kearns Sayre Syndrome, a form of mito. She's fiercely independent but also likes to be served like a princess.

  12. Max is half-way there once you decide to fade your help and require more of him. Your reports in this post show proof positive! Congrats!

    BTW, I see improvements in his postures in these photos compared to other recent photos. Way-to-go!

  13. LOVE this blog! I'm only a part-time "mom" as my fiance's kids are only with us on the weekends, but his oldest is autistic. He's 6 and depends a lot on us to do things for him. We just had a huge disagreement this morning because he wanted us to help him get dressed like we usually do, and we wanted him to do as much of it as he could by himself. It's been a difficult journey, but every time he accomplishes something on his own, his little face lights up and it's the greatest thing in the world. Baby steps. But we'll get there. He makes progress every day. Thanks for this post!

  14. Hi Ellen,
    I am trying to contact you about a piece you wrote for the Huffington Post. My emails keep bouncing back. If you could send me a quick email (nicole.collins@digi-rights.com) I will explain further. Thanks!!!


  15. Ah wonderful photos!! What a great week you had..love the crazy golf one in particular.

    I'm a fraud to be here as I'm not the mum of a special needs child. But, the same applies with my boys (4 and 3). Especially the 4 year old. He will REALLy play up for me to do everything for him and we have had such battles recently over me having to put his shoes on, dress him etc when he can do it himself.

    I think it's' normal' (whatever that means) to push the boundaries for your parents with all that stuff.

    But I know it must harder to find the 'line' with a child who has additional needs.

    Looks like you had a super week!

  16. Erin, it is very heartening to hear those words from you.

    Elaine, that fork story made me smile!

    Felicia, we HAVE the purple toilet seat. I just bought a purple bowl and filled it with purple things from the dollar store, he'll get one every time he goes. We'll see! You're right, he's a smart kid, he knows how to manipulate us.... It is really time he was toilet trained, though.

    Sarah, that is interesting thought on trickery! Max doesn't really buy it when I say things like, "I am too tired to carry you right now." And I think I'd rather just play it straight with him. It is so telling that the guy you dated with spina bifida did so much when he was at your house.

    Chrissi, we've been pushed by the pediatrician and neuro, over the years, to let Max do more stuff, but we have been absolute wusses. Like you, I know in my heart it is for his own good, but I cave.

    Louise, I know what you mean about independence being overrated. But right now, I really, really want Max to try and do more. For his sake AND for ours!!!

    Barb, I'll bet camp works wonders for independence! I'd love to hear more about it.

    Thanks, Aunt Judy!

    Lesley, you go, girl!

    Barbara, that is so heartening to hear about the posture. I hadn't even noticed.

    Ashley, welcome! You sound like an awesome "part-time" mom.

    And Judith, my new friend, you are no "fraud" for being here, both moms of "typical" kids and moms of kids with special needs kids visit. It's always interesting to hear both perspectives.


Thanks for sharing!

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