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  • My Disabled Daughter's Anxiety and Needs

    Hello,

    My precious 9 year old daughter Mary has multiple disabilities. Mary has Cerebral Palsy with right side weakness, Epilepsy, an Enlarged Atrial Valve and is missing the air sacks (alveoli) in the top third of her lungs giving her no reserve lung capacity. In addition the stroke she had in utero caused major learning disabilities. This adds up to a very self critical frail little girl. I am asking for ideas on how to boost her self-esteem and to help her know she is just as wonderful as her quote 'normal friends" . She sees herself as inferior. We homeschool her to help control anxiety/seizures and provide her with adaptive technology for learning.

    Mary travels to multiple specialists and I need fund-raising Ideas for her special needs trust(which pays for medical travel as well as adaptive educational and medical equipment). Prayer is also needed for Mary as well as my wife and I as we all fight the medical and school systems.

    Humbly,
    John Runer
    Challis, Idaho
    Last edited by jruner; 09-27-2009, 10:06 AM.

  • #2
    Have you ever been in touch with the Epilepsy Society?
    Molly Weasley makes Chuck Norris eat his vegetables.

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    • #3
      I have had the Idaho Epilepsy foundation help me get Mary a new doctor the old one kept having us see his Physician's Assistant and refusing to treat her seizures or do an MRI for a possible new stroke. She now has left side weakness where she used to have none!

      Thanks,

      John Runer

      Comment


      • #4
        I used to be a special ed aide, just trying to think of other resources.

        I worked as a volunteer with Special Olympics also, some great folks, and the kids really get so much joy out of participating.

        Another thing to check into is if anyone does horse therapy in the area. They've had great successes in the field, and the rolling motion stimulates a lot of neurons, since balance is on both sides of the brain.

        It would be hard to advise you on fundraisers, as I'm not familiar with your area/situation, but maybe a restaurant would be willing to donate a percentage of one nights sales? We have several that do that around here - and not just the chains.

        If you belong to a church, maybe they could help with a church bazaar? Or they could offer their parking lot for a "yard sale" where people pay to rent a space to sell their stuff. You get that money, plus a small admission fee/concessions?
        Molly Weasley makes Chuck Norris eat his vegetables.

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        • #5
          jruner,
          We are also raising a child with multiple disabilities, (he's now 8). My wife and I have found several local agencies such as SPIN, Family Services etc. willing to assist with everything from therapy to schooling. Contact as many as you can for assistance. We have also found Social Security to be very helpful. I think I kinda know how you feel, but I look at my little guy, and am blessed every day by the gifts he gives us. Hang in there!
          Codeman

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          • #6
            Thanks for the replies. Mary is a blessing and a beautiful little girl. We recently had to raise money for an $800 stroller because medicaid does not honor prescriptions for them and we could not accept donations. That is why Mary now has a special needs trust. If anyone one wants info on it PM me.

            Thanks,

            John Runer

            Comment


            • #7
              I shall send all my prayers your way. I am afraid that is all I can give, but I know it helps.

              God bless you and keep you and yours.
              _____________________________________________
              RIP Officer R.K Pitts
              Fairfield Police Dept California
              my father, my hero, greatest cop who ever lived


              The above comments reflect the personal and unofficial opinions of the poster; and in no way should be taken to indicate any opinion or policy of any government agency.

              Comment


              • #8
                Bake Sales, Bracelets, Baskets Of Cheer, 50/50 chances, soup sales, Pancake Breakfasts, Spaghetti Dinners, Pot Luck, Craft Fair, T-shirts, Pizza kits.... Lots of fundraising things you can do that you don't have to feel like you are begging for money. If she is good at something like art or baking then maybe she could make something exclusive to sell or do it as a hobby.

                One of the best ways I feel to make someone feel better about themselves is a sense of accomplishment. If she finds something she likes to do I would try to encourage her to do it. Maybe also find other people that share a common interest with her. Maybe some support groups or play date type of groups.

                Its trial and error sometimes to find the right thing to fit into without feeling like a space alien.

                Good luck!

                Comment


                • #9
                  Have you ever done desk-top publishing?

                  Houston Children's Hospital used to do (they may still) very cute Christmas cards and ornaments based on patient's drawings.

                  You may need a little upfront money, but it could be popular. You could also approach your local Kinko's and see if they could donate supplies or help with the project.

                  Another very fun fundraiser my PTO did was put together a bunch of Christmas craft kits from Oriental Trading Company....then we had a craft fair for kids. See if the school or church with donate the space/tables...and round up volunteers. You set up a table for each craft staffed by a volunteer. Kids buy a couple of the kits (small...think 3 for $10) and put it together with help. If you know someone with a polaroid, or a digital camera with picture printer, you can do those cute frame ornaments...very popular. Throw in concessions....(local Boy Scouts or Girl Scouts make great concessions staff) and you have a memorable day for everyone!
                  Molly Weasley makes Chuck Norris eat his vegetables.

                  sigpic

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                  • #10
                    Good Idea Willow. Made me remember that some of the schools make the kids do a required community service project every year. They have to do so many hours/projects in the school year. The one event was a craft fair that they would help set up, help sell sodas and snacks and help clean up.

                    In some of the craft fairs that we would go to they would ask each crafter to donate one item and then they would sell tickets to chance it off.

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                    • #11
                      do a bit of web searching and locate the Shriner's hospital nearest you. If you meet their guidelines, they will go a long long way toward helping your child, at minimum or no cost. Their situation has changed with the economic times, but i would still contact them.

                      Fund raisers......start close to "home". What are the work restrictions at your job? How close are you to local LEO/Fire Fighters/ect? Try and work with people that know you. Work with those people who are already "publically" minded; they are already in the "public support" mode, and it's easy for them to transition, for the good projects.

                      good luck.
                      Si Vis Pacem, Para Bellum

                      Comment


                      • #12
                        assist

                        Originally posted by jruner View Post
                        Hello,

                        My precious 9 year old daughter Mary has multiple disabilities. Mary has Cerebral Palsy with right side weakness, Epilepsy, an Enlarged Atrial Valve and is missing the air sacks (alveoli) in the top third of her lungs giving her no reserve lung capacity. In addition the stroke she had in utero caused major learning disabilities. This adds up to a very self critical frail little girl. I am asking for ideas on how to boost her self-esteem and to help her know she is just as wonderful as her quote 'normal friends" . She sees herself as inferior. We homeschool her to help control anxiety/seizures and provide her with adaptive technology for learning.

                        Mary travels to multiple specialists and I need fund-raising Ideas for her special needs trust(which pays for medical travel as well as adaptive educational and medical equipment). Prayer is also needed for Mary as well as my wife and I as we all fight the medical and school systems.

                        Humbly,
                        John Runer
                        Challis, Idaho
                        You mentioned at least one developmental disabilities (cerebral palsy)... here in CA, there is the Dept. of Developmental Services which funds non-profit Regional Centers...they employ Service Coordinators who create Treatment Plans with the clients / families / schools / doctors, etc...

                        Maybe you are already aware of Idaho's version...in the Idaho Dept of Health and Welfare. http://healthandwelfare.idaho.gov/Me...0/Default.aspx

                        I don't know if Idaho works things the same way, but in CA, the client ends up with state funded services for their lifetime.

                        Best wishes.

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