Guest guest Posted July 6, 2006 Report Share Posted July 6, 2006 We are an audience. sent this great site with a person who designs the coolest t-shirts and bumper stickers. We might add to the topics: breakdowns of different chores or jobs. I have not forgotten that I will start work on this when Elie returns to school in 4 weeks!!!!!! And the training component for people who work with our kids - vital! We also need a piece on educatiing medical staff on how our children react out of the norm to: situations, medications, treatments, etc. Ah, yes - much work to do and so little time.... Sara - Choose to make lemonade, not complain about the lemons. > >Reply-To: >To: >Subject: Re: Joan >Date: Wed, 5 Jul 2006 20:10:16 -0700 (PDT) > >What did send? > >I've been a little distracted. > >I was thinking that if we did any educational piece it >would most definitely cover the things that are not >done at the level we need at national conventions - >communication partnering, social stories, positive >behavior supports, prehaps a make and take session for >visual tools, training support folks who work with >yoru child in your home... > >As for selling things - we need a little more exposure >for me to think we have an audience who will buy them! > > >j > >--- sara cohen wrote: > > > Wonderful t-shirts and bumper stickers at the site > > sent us. > > Wonder if we could use some idea like this to raise > > money for the info > > center?? > > > > > > > > Sara - Choose to make lemonade, not complain about > > the lemons. > > > > > > > > > > > > > > > >Reply-To: > > >To: > > >Subject: Re: Re: Future Picnics > > >Date: Wed, 5 Jul 2006 06:45:35 -0700 (PDT) > > > > > >HI all, > > > > > >Take a peek at the DSAIC (Down Syndrome - Autism > > >Information Center) page on disabiltysolutions.org > > . > > >That will give you a better idea of the vision. > > We're > > >not " under " anyone. We will work in colloaboration > > >with the DS Community and other groups (autism > > support > > >groups, TASH, etc) to share what is most helpful to > > us > > >to be a part of the greater " disability community " > > and > > >our neighborhood communities. We are their > > technical > > >support. > > > > > >Does that make sense? we dont' want to create a new > > >parent organization - we want to create a clearing > > >house for informaton and technical support and > > >collaboration. We want to encourage true inclusion > > in > > >all communities. > > > > > >Take care, > > >Joan > > > > > >--- Liz D wrote: > > > > > > > Joan & : We definitely need to keep the > > DS > > > > & Autism under the DS community. There are so > > many > > > > families out there dealing with the same issues > > we > > > > are and their kids are not diagnosed. If there > > is > > > > anything I can do to help promote anything you > > guys > > > > come up with, let me know! I'm there! > > > > > > > > Liz > > > > Re: Future Picnics > > > > > > > > > > > > Hi Joan: > > > > I agree with the idea of keeping the DS-ASD > > issues > > > > as part of the > > > > existing DS community. It can take people a > > while > > > > to realize that > > > > your child has issues beyond just DS and it's > > > > important that we are > > > > visible and available. This was an issue that > > > > caused us a lot of > > > > wasted time, not understanding why we didn't > > fit > > > > in, and that we may > > > > have been dealing with something beyond DS. > > > > > > > > I would be interested in helping to pull > > together > > > > an educational > > > > forum for next year. I think we should start > > with > > > > taking a survey > > > > of where the majority of the people are so we > > can > > > > determine the most > > > > logical region. Perhaps you already have an > > > > address list from the > > > > newsgroup that provides that info. I also > > would > > > > suggest that even > > > > if we do an educational forum (perhaps tied to > > one > > > > of the National > > > > DS conventions - like Dr. Capone's session is > > this > > > > year), that > > > > anyone who also wants to have a casual get > > > > together, no matter where > > > > they are, should! > > > > > > > > So, I guess I'm volunteering. I'll be at the > > NDSC > > > > convention - if > > > > you want to we could " take a meeting " ! > > > > > > > > > > > > > > > > > > > > > > Let's go one step at a time.... > > > > > I think you have all shown that this is a > > > > component of > > > > > the DS-Autism Information Center that must > > be > > > > > addressed. There are politics to consider > > (i.e., > > > > not > > > > > creating yet another ds group - I want us to > > > > integrate > > > > > and stretch the ones that exist, if possible > > - > > > > but > > > > > that we need the connection just as much, if > > not > > > > more, > > > > > than other families. > > > > > > > > > > First step I would like to consider is a > > grant > > > > for an > > > > > educational program to go along with this. > > > > Something > > > > > very relaxed (like this was) but with an > > > > educational > > > > > component that is welcoming to our kids. > > > > > > > > > > And it has to come to the west > > coast...that's > > > > where > > > > > *I* am! It would depend on whether or not > > > > you're > > > > > willing to drive a bit if you flew in, but > > there > > > > are > > > > > some great retreat centers we might be able > > to > > > > pull > > > > > this off at and get really grand support for > > our > > > > > kids.Anyone like the beach? > > > > > > > > > > But I guess it would all depend on who wants > > to > > > > step > > > > > up and be the prject manager. > > > > > > > > > > volunteers? > > > > > > > > > > Joan > > > > > > > > > > > > > > > > __________________________________________________ > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2006 Report Share Posted July 20, 2006 <<Usually it's just him and me 5 nights a week.>> Hi, Everyone...Joan...sounds like my house.....me and Gareth by ourselves. That is what I miss the most....someone to carry on a conversation with. BTW.....did you send out 'thank you' notes or will you be sending me the format? I did write into the local paper and put in an editorial thanking all our sponsors and commenting on how everyone said the park was beautiful, safe, and clean. All the places thanked me for the plaques that Liz did up for them. I should go back and see if they are displayed!!! Take care, Everyone. Margaret Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2006 Report Share Posted September 9, 2006 Hey, I'd be interested in this too. My husband who is a radio news announcer is going to be the MC for the Buddy Walk again here in Seattle. If there's stuff I could have out regarding dual dx that would be great! a (Hannah 9) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2006 Report Share Posted September 9, 2006 Margaret: Let me get together the info we made available at our Conference this year. I think they are all email-able. Liz Joan Hi, Everyone....Joan and anyone else.....our Buddy walk is a month away and I was wondering what sort of handouts you give out about dual dx. I have the paper from last year....just a paragraph or two about Gareth and dual dx'd kids. I will have a table again this year with a sign for Dual Diagnosis. Is there any new info I can distribute? Take care, Everyone. Margaret Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2006 Report Share Posted September 9, 2006 Well. Hmm. I should put together a brochure about the info center. Time is not my friend this summer! I know, s ummer's over, but my summer schedule has not relazed yet! Let me think about what we should put in a brochure. Anyone want to contribute photos? they need to be high resolution so they will print well. Send them to: joan@... Thanks! Joan --- mfroof@... wrote: > Hi, Everyone....Joan and anyone else.....our Buddy > walk is a month away and > I was wondering what sort of handouts you give out > about dual dx. I have the > paper from last year....just a paragraph or two > about Gareth and dual dx'd > kids. I will have a table again this year with a > sign for Dual Diagnosis. Is > there any new info I can distribute? > Take care, Everyone. > Margaret > > > [Non-text portions of this message have been > removed] > > > > -------------------------------------------------- > Checkout our homepage for information, > bookmarks, and photos of our kids. Share favorite > bookmarks, ideas, and other information by including > them. Don't forget, messages are a permanent record > of the archives for our list. > http://groups.yahoo.com/group/ > -------------------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2006 Report Share Posted September 9, 2006 Joan: What kind of pictures are you looking for? Liz Re: Joan Well. Hmm. I should put together a brochure about the info center. Time is not my friend this summer! I know, s ummer's over, but my summer schedule has not relazed yet! Let me think about what we should put in a brochure. Anyone want to contribute photos? they need to be high resolution so they will print well. Send them to: joan@... Thanks! Joan --- mfroof@... wrote: > Hi, Everyone....Joan and anyone else.....our Buddy > walk is a month away and > I was wondering what sort of handouts you give out > about dual dx. I have the > paper from last year....just a paragraph or two > about Gareth and dual dx'd > kids. I will have a table again this year with a > sign for Dual Diagnosis. Is > there any new info I can distribute? > Take care, Everyone. > Margaret > > > [Non-text portions of this message have been > removed] > > > > -------------------------------------------------- > Checkout our homepage for information, > bookmarks, and photos of our kids. Share favorite > bookmarks, ideas, and other information by including > them. Don't forget, messages are a permanent record > of the archives for our list. > http://groups.yahoo.com/group/ > -------------------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2006 Report Share Posted September 9, 2006 I think a brochure re: ddx would be wonderful. Liz Re: Joan Well. Hmm. I should put together a brochure about the info center. Time is not my friend this summer! I know, s ummer's over, but my summer schedule has not relazed yet! Let me think about what we should put in a brochure. Anyone want to contribute photos? they need to be high resolution so they will print well. Send them to: joan@... Thanks! Joan --- mfroof@... wrote: > Hi, Everyone....Joan and anyone else.....our Buddy > walk is a month away and > I was wondering what sort of handouts you give out > about dual dx. I have the > paper from last year....just a paragraph or two > about Gareth and dual dx'd > kids. I will have a table again this year with a > sign for Dual Diagnosis. Is > there any new info I can distribute? > Take care, Everyone. > Margaret > > > [Non-text portions of this message have been > removed] > > > > -------------------------------------------------- > Checkout our homepage for information, > bookmarks, and photos of our kids. Share favorite > bookmarks, ideas, and other information by including > them. Don't forget, messages are a permanent record > of the archives for our list. > http://groups.yahoo.com/group/ > -------------------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2006 Report Share Posted September 10, 2006 Hi Joan, I'm outside of Syracuse, NY. I know that we have a Wegmans (grocery store), and a Nature Time Health Food store that offers a lot. So far, we've just been eating meat, fish, fruits, some vegi's and yogurt. A friend brought us a pizza for dinner last night and Mikey took me over to the box with his hand and wanted it. I felt so bad for him. But he ate taco salad with tomatoes, lettuce and cheese. I tried to give him these gluten free cheddar crackers and he spit it out and threw it on the floor. Tasted like cardboard. I'll have to find the crackers you all suggested! Poor little guy. I'm trying to locate a cook book that some local mom's put together -- I hear it's good. I appreciate any tips you can give. Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2006 Report Share Posted September 10, 2006 When my son who is 36 was a boy I made pancake sandwiches a lot with yummy fillings. The longer the kids are on the gluten free diet, the easier it becomes. I must admit that first year was a pip! He was about 4 years old when we started. After awhile we also had to do a no dairy diet too..now that an added dimension. Good luck! Brigid Re: Joan Hi Joan, I'm outside of Syracuse, NY. I know that we have a Wegmans (grocery store), and a Nature Time Health Food store that offers a lot. So far, we've just been eating meat, fish, fruits, some vegi's and yogurt. A friend brought us a pizza for dinner last night and Mikey took me over to the box with his hand and wanted it. I felt so bad for him. But he ate taco salad with tomatoes, lettuce and cheese. I tried to give him these gluten free cheddar crackers and he spit it out and threw it on the floor. Tasted like cardboard. I'll have to find the crackers you all suggested! Poor little guy. I'm trying to locate a cook book that some local mom's put together -- I hear it's good. I appreciate any tips you can give. Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2006 Report Share Posted September 10, 2006 WE're really careful not to have a good alternative for Andy - something he likes - when others are eating somethng we know he will want. We're really fortunate to have a brick-oven pizza place that makes gluten-free pizza (and delivers!) in our neighborhood. I posted a request to the Celiac.org list for restaurants, bakeries and grocers in the syracuse area. I also googled " glute-free syracues ny " and foun da few things: Welcome to the Western NY Gluten Free Diet Support Group Website http://www.buffaloglutenfree.org/home.html They have a button for local grocers I did find this: http://www.glutenfreepizza.com/ NO idea if it's good, and they're in idaho. so ordering would be spendy. *I* Like " Namaste foods " pizza crust mix. and we fall back on Amy's gluten free rice crust cheese pizza. Amy's has rice mac and cheese and a lasagna that we use as well as a couple of enchiladas and " bowl " meals. http://www.amys.com/ http://www.amys.com/special_diets/celiac.php Anyway! I " ll keep you posted. JOan __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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