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Oh, Lord. Here in Zurich we only have 5 weeks summer holiday and I am so grateful. I work hard to fill it and I've got 3 n/t kids. Whatever routine you can build, go for it. Including a 1/2 hour dvd while you have your evening glass of wine.

That kind of stuff drives me absolutely bananas - it's really just so hard enough to advocate for the important things. To have to spend so much time and energy on the stupid stuff (b/c the upshot is that respite care is a really good thing) is totally crazy-making.

Your description of Elias' frustration with his disabilities and relationship with Olive had me weeping. I feel your pain as his struggles are illuminated by Olive's successes. When my Ellianna asked why her two year old sister could walk better in play-high-heel shoes than her, my heart broke for her. Or when Ellie asked me what suggestions I could make to help her walk like her friends, crushing. I can't resovle your anguish but I can let you know your family isn't alone.

Kimberly your comment gave me goose bumps of recognition, thanks for letting me know that you get the anguish of this off-road we travel. I wish I could look into the future and know it got easier but I have no such magic ball...

Sara, crazy-making indeed. I trust a career military woman and trained Army Medic to respond to a medical crisis better than a recent grad of a basic First Aid CPR course...but you know logic and common sense and experience don't count for much within systems shrouded in paperwork and flaming hoops.

Danielle, we have ten-plus weeks off and days that never grow dark....so yes I think we utilize DVD's and Elias ipad to gain a half hour of down time at night for that much needed glass to tip:)

Your summer vacation starts earlier than here in Canada where there is almost a month of school left but you also start back in august whereas here school doesn't usually start until after labour day. I hope to get an ipad for my daughter later this year.

"He was my North, my South, my East and West, My working week and my Sunday rest, My noon, my midnight, my talk, my song; I thought that love would last forever: I was wrong"

I like you am excited for the time off of work that my summer vacation brings (starts NEXT week), but know that I will have trouble keeping my kiddos busy. Luckily, we have grandma and grandpa "respite".
Crazy about your respite worker. I think it is awful how hard it is for parents to get respite and other services. Here in AZ we tell parents to be ready to be turned down for all state service 2 times. The 3rd time you apply is a charm. This is so not right.

"flaming hoops" - I love it! Ridiculous, every day, in every way. We have a county social worker come to our house once a year, just to keep us "on the list" in case any REAL help ever becomes available. To fill up her time here, she tediously goes thru every single program there is, followed by, "Don't qualify, don't qualify, don't qualify... OH! Your daughter would qualify for this one , but no more funding (and the waiting list is 6,000 deep- no kidding!)... or too much income this year, or you have to fill out this 30-pg form that is more difficult than a complicated tax return, wait 9 months for approval, then pay a $1000/mo "family co-pay" to the state, are you interested?" Uh, gee, no thanks. "We could offer you respite in the form of foster care, interested?" No! The part that bothers me is that other people often assume that we are benefitting form any number of these programs, some even going so far as to look upon us as a drain on society, when we can't even get in on what is available at all. Aside from a yearly visit from the social worker. Sigh...

Wow, how can I write anything after hearing what all of these fabulous parents post. All I can say is that, don't stop writing- you all support each other so much- I so wish I had this structure 20- some years ago when I needed it. I felt like I was crazy with so much on my plate and now I hear all of yours and I just LOVE this support system. It doesn't get any easier when they get older. There is always something and it is always "all about Me" I just don't remember that being an issue when I was growing up- I had to deal with it. What have we done to this next generation? OK, too much wine, too much work and I am exhausted.
Love you all.

Poor kid, that's got to be very frustrating! He has comes leaps and bounds in the last few years so he deserves a HUGE pat on the back for what he's accomplished!!!! Still it must be hard to see his little baby sister "get it" so easily

This may be a naive and ridiculous idea, but are there any day camps in your area that might take Elias? Shoot, what if you started a day camp at your elementary school, an inclusive one? (I know--you are thinking, that woman in Zurich has lost her mind.) I sent my two older kids to a camp over spring break. I was disappointed because the different groups were not integrated, but ...
Anyway, it is a crazy thought but maybe a long term project? Go on--tell me I am nuts to dump more work on you.

There are some camp opportunities for Elias once he turns 8, so next summer we'll look into them more. And yes dear Danielle, at the moment, I will call you nuts as I'm too fried to plan a play-date let alone a day-camp but that is a good seed for my noggin and not a bad idea at all. Someday...:)

Kate, I too hate that some people assume we are freeloading the system when in fact there is nothing free about the system. I hope one of these days when that Social Worker arrives at your door she has a program that meets your needs and you theirs and you don't have to write a book to enroll. I get so tired of the paperwork and the run-around.

As Noel put so well, all of you hold me up with your sharing, questions, ideas, comments, and the heart that is so evident in your words. Thank you!

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