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What happen to my patience?



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upstate ny? what county? or NYC?

Queens

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Yes it's very rough.

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Do you have access to any respite care funds, so that you can get a break from time to time?

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My 17 year old son is autistic and when he was 2 he would climb out the window (until we got locks for the windows) so I know a little of what you are going through). I have no idea what I would have done if I hadn't had a supportive husband.

Hang in there, mum. We're all pulling for you.

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Do you have access to any respite care funds' date=' so that you can get a break from time to time?[/quote']

I wouldn't know but I will look into it

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My 17 year old son is autistic and when he was 2 he would climb out the window (until we got locks for the windows) so I know a little of what you are going through). I have no idea what I would have done if I hadn't had a supportive husband.

Hang in there' date=' mum. We're all pulling for you.[/quote']

We instal gates on the window when we notice the climbing.

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In Wisconsin, we have access to Medicaid waivers that include intensive therapy (in-home or in a school setting) and respite care. I'm not sure if New York has something similar. Look for a Katie Becket Medicaid waiver. In Wisconsin, it also qualifies your child for a county case manager who can help you navigate all the different systems (county, state, federal, school, etc.). I did find that NY has an insurance mandate for autism therapy. This is in addition to what public schools offer. For respite care providers, I put ads in the student job center at my local university.

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In Wisconsin' date=' we have access to Medicaid waivers that include intensive therapy (in-home or in a school setting) and respite care. I'm not sure if New York has something similar. Look for a Katie Becket Medicaid waiver. In Wisconsin, it also qualifies your child for a county case manager who can help you navigate all the different systems (county, state, federal, school, etc.). I did find that NY has an insurance mandate for autism therapy. This is in addition to what public schools offer. For respite care providers, I put ads in the student job center at my local university.[/quote']

Yes we have something called respite here in New York. He is in school full time. He goes to therapy outside of the school weekly for 1 hour. He is now starting to get better. He has stop climbing on the window but every so often looks out if he notice I step out even if someone is home he is looking for me awww. I feel so overwhelm though when he is home cuz I have to cook & he loves watching me fry the meat turn the rice but he gets to close that he almost got burn lucky I push him a little when the oil was splashing. Now he has a distance. I don't want to take time away from my teen to watch him she has a social life as well. I'm now trying to prepare dinner when they are in school so all that's left is to make the meat & just hear up the food. So I also spend time with my kids. Feeding them is extremely important but that's all they see me do. Cook all day when they are home or clean. Even when we are out my 5 year old says your gonna cook on the BBQ (when we are on the boat) I say nope let daddy do that I'm taking a cooking break. I can cook on a charcoal BBQ gas grill stove hot plate anything & electric stove which i hated but i manage. I was raise the old fashion way. If things start to get out of hand as he grows I will seek extra help. Thanks

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    • Alisa_S

      On day 4 of the 2 week liquid pre-op diet. Surgery scheduled for June 11th.
      Soooo I am coming to a realization
      of something and I'm not sure what to do about it. For years the only thing I've enjoyed is eating. We rarely do anything or go anywhere and if we do it always includes food. Family comes over? Big family dinner! Go camping? Food! Take a short ride or trip? Food! Holiday? Food! Go out of town for a Dr appointment? Food! When we go to a new town we don't look for any attractions, we look for restaurants we haven't been to. Heck, I look forward to getting off work because that means it's almost supper time. Now that I'm drinking these pre-op shakes for breakfast, lunch, and supper I have nothing to look forward to.  And once I have surgery on June 11th it'll be more of the same shakes. Even after pureed stage, soft food stage, and finally regular food stage, it's going to be a drastic change for the rest of my life. I'm giving up the one thing that really brings me joy. Eating. How do you cope with that? What do you do to fill that void? Wow. Now I'm sad.
      · 1 reply
      1. LeighaTR

        I hope your surgery on Wednesday goes well. You will be able to do all sorts of new things as you find your new normal after surgery. I don't know this from experience yet, but I am seeing a lot of positive things from people who have had it done. Best of luck!

    • Alisa_S

      On day 4 of the 2 week liquid pre-op diet. Surgery scheduled for June 11th.
      Soooo I am coming to a realization
      of something and I'm not sure what to do about it. For years the only thing I've enjoyed is eating. We rarely do anything or go anywhere and if we do it always includes food. Family comes over? Big family dinner! Go camping? Food! Take a short ride or trip? Food! Holiday? Food! Go out of town for a Dr appointment? Food! When we go to a new town we don't look for any attractions, we look for restaurants we haven't been to. Heck, I look forward to getting off work because that means it's almost supper time. Now that I'm drinking these pre-op shakes for breakfast, lunch, and supper I have nothing to look forward to.  And once I have surgery on June 11th it'll be more of the same shakes. Even after pureed stage, soft food stage, and finally regular food stage, it's going to be a drastic change for the rest of my life. I'm giving up the one thing that really brings me joy. Eating. How do you cope with that? What do you do to fill that void? Wow. Now I'm sad.
      · 1 reply
      1. summerseeker

        Life as a big person had limited my life to what I knew I could manage to do each day. That was eat. I hadn't anything else to look forward to. So my eating choices were the best I could dream up. I planned the cooking in managable lots in my head and filled my day with and around it.

        Now I have a whole new big, bigger, biggest, best days ever. I am out there with those skinny people doing stuff i could never have dreamt of. Food is now an after thought. It doesn't consume my day. I still enjoy the good home cooked food but I eat smaller portions. I leave food on my plate when I am full. I can no longer hear my mother's voice saying eat it all up, ther are starving children in Africa who would want that!

        I still cook for family feasts, I love cooking. I still do holidays but I have changed from the All inclusive drinking and eating everything everyday kind to Self catering accommodation. This gives me the choice of cooking or eating out as I choose. I rarely drink anymore as I usually travel alone now and I feel I need to keep aware of my surroundings.

        I don't know at what point my life expanded, was it when I lost 100 pounds? Was it when I left my walking stick at home ? Was it when I said yes to an outing instead of finding an excuse to stay home ? i look back at my last five years and wonder how loosing weight has made such a difference. Be ready to amaze yourself.

        BTW, the liquid diet sucks, one more day and you are over the worst. You can do it.

    • CaseyP1011

      Officially here for a long time, not just a good time💪
      · 0 replies
      1. This update has no replies.
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