tag:blogger.com,1999:blog-401303964563152307.post1778644219264439934..comments2024-03-28T03:35:52.176-04:00Comments on Love That Max : Emergency preparation for kids with special needs (and nightmare scenarios)Ellen Seidmanhttp://www.blogger.com/profile/01433429847255621203noreply@blogger.comBlogger31125tag:blogger.com,1999:blog-401303964563152307.post-42188748696089124822013-11-07T14:56:32.612-05:002013-11-07T14:56:32.612-05:00The US has strict anti terrorism laws in place for...The US has strict anti terrorism laws in place for our safety. As a result, the terrorism rate in the US is VERY low. Its unlikely to happen. You're more likely to be affected by fires, floods, earthquakes, hurricanes etc. <br /><br />Can I have a copy of the emergency check list please. My email is thara5241@gmail.com. Thanks! tharahttps://www.blogger.com/profile/06178926420365797564noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-8751244265893099592011-09-14T11:21:08.652-04:002011-09-14T11:21:08.652-04:00I would like a copy of the emergency prep checklis...I would like a copy of the emergency prep checklist, thanks! <br />kidtoothdrlaura@aol.comMyLittleMamahttps://www.blogger.com/profile/08444174631543557240noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-10328398229950536062011-09-14T11:20:33.800-04:002011-09-14T11:20:33.800-04:00I would like a copy of the emergency checklist, pl...I would like a copy of the emergency checklist, please! Thank you. Kidtoothdrlaura@aol.comMyLittleMamahttps://www.blogger.com/profile/08444174631543557240noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-8545820467613065262011-09-06T23:29:17.159-04:002011-09-06T23:29:17.159-04:00I feel that we are so prepared for what Kyan needs...I feel that we are so prepared for what Kyan needs now and meet his needs but we are soooo not prepared if something happens to us. I never even thought about explaining an IEP to guardians! Can you e-mail me your list? shanagonzalez@yahoo.com<br /><br />Thank You!Shana Girouxhttps://www.blogger.com/profile/10006846278917934375noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-86632663620555877392011-09-05T21:50:47.398-04:002011-09-05T21:50:47.398-04:00I'd love a copy please!
jenniehenn@gmail.comI'd love a copy please! <br />jenniehenn@gmail.comjenniehennhttps://www.blogger.com/profile/16198158689830449744noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-79205285368834595512011-09-02T10:15:12.656-04:002011-09-02T10:15:12.656-04:00Ellen,
Great post! I'd love a copy. Often w...Ellen, <br />Great post! I'd love a copy. Often we think of/are prepared for the short-term...not the longer term possibilities. lynnjmail@aol.comAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-92205351385078980162011-09-01T21:45:23.238-04:002011-09-01T21:45:23.238-04:00I would love a copy too. My email is miraclesmomma...I would love a copy too. My email is miraclesmommah at gmail.com. <br /><br />We've already finished our will and the special needs trust but I had never thought to make a list of therapists and other basic info. I'm over here feeling like a goof. <br /><br />I worry a lot about what will happen if we don't have the right meds when hurricanes hit. At one point my daughter was even on oxygen and we had to evacuate. I didn't know where to get the cylinders from given that we usually used a local provider. Oh it was so nerve wracking! Everything turned out okay but it was hairy for a while. Thank goodness she was off of that when Katrina hit and we were homeless for a month!Heather Landryhttps://www.blogger.com/profile/06367757402071557434noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-62299710731844430632011-09-01T17:32:14.624-04:002011-09-01T17:32:14.624-04:00I would love a copy. thanks!
kristinasorenson @ ho...I would love a copy. thanks!<br />kristinasorenson @ hotmail dot comKristinahttps://www.blogger.com/profile/07941583827102156124noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-7034229710771331232011-09-01T12:12:38.451-04:002011-09-01T12:12:38.451-04:00I'd love a copy too. EKDoolittle18@gmail.com. ...I'd love a copy too. EKDoolittle18@gmail.com. One thing we've done is to meet with an estate attorney and change our wills. Our attorney told us that Jake should never have any money in his name, but we can set up a special needs trust. That trust is "blind to medicaid" so it won't affect his eligibility for services (especially after he is 18). We also designated both a guardian (my husband's sister and her husband) and an executor of the estate (my brother). I may be using the wrong terminology but basically someone else besides Jake's guardians would be watching over any money left to Jake or to his special needs trust ensuring that money is being spent wisely (not that we don't trust my husband's sister), but I think it further ensures that good decisions will be made. You may not have another person you trust to do that. So in a nutshell, if my husband and I die, then all our money gets left to our second son except what goes into the special needs trust. We also had our parents change their wills in the event that we die at the same time then their money gets allocated that way too. Sorry - that was long winded but we didn't realize any of this until we met with some special needs consultants.EKDoohttps://www.blogger.com/profile/08389174288781044324noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-58791519289980138162011-09-01T12:05:43.515-04:002011-09-01T12:05:43.515-04:00I'll mail out copies of the forms to everyone ...I'll mail out copies of the forms to everyone soon. <br /><br />We got a five-month supply of Trileptal by ordering through the insurance company's pharmaceutical plan. It's cheaper for them to get the stuff in bulk! Call up your insurance co. and see if they have a plan like that through which you can order in bulk.Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-32383196744358767232011-09-01T11:57:37.851-04:002011-09-01T11:57:37.851-04:00How did you get a 5 month supply? SHare pls!! My...How did you get a 5 month supply? SHare pls!! My son takes trileptal but the liquid we get has to be used within a certain number of weeks (7 I think). Sam has never had a clear seizure but his EEG was abnormal.Emmahttps://www.blogger.com/profile/02859791572622007142noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-9833590990975050202011-09-01T11:14:45.147-04:002011-09-01T11:14:45.147-04:00I'd love a copy of the form. Thanks! azimmer...I'd love a copy of the form. Thanks! azimmerman@sumcd.orgAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-10712989410768186602011-09-01T09:57:15.434-04:002011-09-01T09:57:15.434-04:00Ellen--
Glad that you all survived the hurricane....Ellen--<br /><br />Glad that you all survived the hurricane. <br /><br />One of the things you said really caught my interest. You said that you had 5 months of seizure medication for Max. How did you get more than one month. I have often worried about this both for Samuel and myself. What would happen if we couldn't get somewhere to get our medication.<br /><br />Another suggestion for your readers, always carry a list of medications, doctors, pharmacist with you. When we travel, I put one in each carry-on and each piece of luggage.<br /><br />It also makes it much easier when you go to a new doctor. I just print out an updated copy and attached it to the forms, instead of having to rewrite all the information again.<br /><br />Hope your basement get clean soon and I am so glad your dad's stuff is safe. School supplies can be replaced, but not things like that.Let Kids Playhttps://www.blogger.com/profile/09585825807428388636noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-27534906147221837842011-09-01T08:03:41.579-04:002011-09-01T08:03:41.579-04:00Great food for thought.
Would love to have a copy...Great food for thought.<br /><br />Would love to have a copy -<br /><br />lanarush@austin.rr.com<br /><br />Thanks, Ellen! And happy to hear all of you weathered the storm fine.AlongCameTheBirdhttps://www.blogger.com/profile/04590432394118183751noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-10701577788895238302011-09-01T07:14:13.144-04:002011-09-01T07:14:13.144-04:00I am pretty lucky--I live within walking distance ...I am pretty lucky--I live within walking distance (well, it would be a hike, but I could walk it in well under a half hour) of a hospital. I wouldn't think twice of walking/biking if that was the only way to get there.Felicianoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-86696467010031211512011-09-01T07:08:57.014-04:002011-09-01T07:08:57.014-04:00That is such a good idea! Especially since the tw...That is such a good idea! Especially since the twins had been in school for a whole year before my mom clued in that they had started kindergarten...I imagine the smaller details aren't even on her radar. I would love the form please nerdgirlmom@gmail.com. Thank you! I hope your basement is all fixed up quickly, and I'm glad Max is handling it all ok!Tara (Nerdgirlmom)https://www.blogger.com/profile/01794050180559426460noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-29839265863360465262011-09-01T06:05:39.472-04:002011-09-01T06:05:39.472-04:00The biggest planning for emergencies needed for us...The biggest planning for emergencies needed for us, is actually planning to conquer S's anxiety about emergencies. The fire alarm accidentally went off at school the other day and it took a good half an hour to calm him down. <br />I can't even think about any of the other more serious stuff about wills/trusts etc.... but I know I really know that I should. Thanks for the reminder :-)Diannehttp://n0thingbuteverything.wordpress.com/noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-21481011764753949042011-09-01T03:09:45.383-04:002011-09-01T03:09:45.383-04:00We've lived the disaster 3 times in the last y...We've lived the disaster 3 times in the last year. I live in Christchurch, New Zealand and we have had 3 devastating earthquakes since September 4th last year. We still live in our house but it will most likely be demolished. With the worst earthquake in February we lost power, water and sewerage for 2 weeks. We still get quakes frequently. I never leave the house without plenty of food, water, clothing etc for Owen. I also make sure I've got enough oxygen bottles in storage in case we can't make it to the hospital. <br /><br />I really like the idea of that form you mentioned. What a good idea.The Boydshttps://www.blogger.com/profile/17734578890361337666noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-27819337109620725892011-08-31T23:58:16.355-04:002011-08-31T23:58:16.355-04:00please email me a copy. Thanks
lesleytaylor@hotma...please email me a copy. Thanks<br />lesleytaylor@hotmail.comAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-24577929438182931252011-08-31T20:46:18.046-04:002011-08-31T20:46:18.046-04:00I would love a copy of the letter of intent. kimbe...I would love a copy of the letter of intent. kimberly6@hotmail.com I have regular anxiety attacks thinking about what would happen if... (insert crazy senario here). I thought I was the only one! Glad I'm not crazy!<br />KimAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-24422764235928514202011-08-31T18:29:55.584-04:002011-08-31T18:29:55.584-04:00I would love a copy! paradisefound2001 at gmail d...I would love a copy! paradisefound2001 at gmail dot comReading Widely https://www.blogger.com/profile/04623490605434252471noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-2471104089862434452011-08-31T17:31:43.192-04:002011-08-31T17:31:43.192-04:00Great idea!! Please send me a copy - hadamon@gmail...Great idea!! Please send me a copy - hadamon@gmail.com. Thank you so much.Heatherhttps://www.blogger.com/profile/04470767791901867826noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-75893613674212646402011-08-31T17:31:14.205-04:002011-08-31T17:31:14.205-04:00I would love a copy. Thanks! jjjstenger@gmail.com...I would love a copy. Thanks! jjjstenger@gmail.com<br /><br />I, too, have had awful nightmares and "Yes" they always stop short of disaster.JoJohttps://www.blogger.com/profile/03332655199159504033noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-12060268858533156272011-08-31T17:09:45.428-04:002011-08-31T17:09:45.428-04:00I'd love a copy too; thank you! (andee.glenn a...I'd love a copy too; thank you! (andee.glenn at gmail)<br /><br />We are not nearly as prepared as we should be for an emergency, especially pertaining to Phia. I cringe when I think of it.<br /><br />Thanks to the earlier "anonymous" poster for the additional websites. I'll take a look at them.Andreahttps://www.blogger.com/profile/13546347150603853508noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-68662495892317054902011-08-31T16:52:42.986-04:002011-08-31T16:52:42.986-04:00Would love a copy cllmnshan@aol.comWould love a copy cllmnshan@aol.comAnonymousnoreply@blogger.com