tag:blogger.com,1999:blog-4903892306148244894.post2596515497941762348..comments2023-07-15T04:43:43.057-04:00Comments on Hanzely Clan News: Identical Twins with Down Syndrome... Keeping it Real...Anonymoushttp://www.blogger.com/profile/10887462506061609158noreply@blogger.comBlogger10125tag:blogger.com,1999:blog-4903892306148244894.post-88763027146014776822013-03-28T00:12:57.495-04:002013-03-28T00:12:57.495-04:00I have identical twins with ds born on dec. 23,201...I have identical twins with ds born on dec. 23,2012 and my journey has just started I luv seenin my boys home finally after havin them in the nicu for two months I luv reading stories on twins with ds bcuz it make me feel lik I'm not the only one out there and god gives special bbys to special ppl . I'm new at this but I'm sure its goin to b ok thou at times I do feel a lyl down but I kno I can do this my boys r amazin and so r urs ...Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4903892306148244894.post-58899562035767322512012-05-09T09:14:10.795-04:002012-05-09T09:14:10.795-04:00I work for the Ross Co. Board of DD and was doing ...I work for the Ross Co. Board of DD and was doing some research and ran across your blog. Just wanted to take the time to thank you for sharing and to encourage you to continue you write!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4903892306148244894.post-82639321412049138732011-07-19T00:01:24.391-04:002011-07-19T00:01:24.391-04:00OK, somehow I stumbled upon your blog---LOVE YOUR ...OK, somehow I stumbled upon your blog---LOVE YOUR POST!! Many blog writers (like myself) tend to write about the fun stuff that happens when in reality it can be tough--very, very tough!! Last year we bought her a Dynavox ($10000--thank God for insurance) and because she does communicate, with 75% understanding, I rarely get her dynavox out. But, maybe your boys will use it everyday. They are heavy/overwhelming but seems to grow as the child grows. A dynavox can be used as a regular computer with WiFi but I haven't figured that out yet. Anyway, thanks for being human and blogging about it! Whether your a mother to twins/single typical/or not so typical being a parent is TOUGH!! And yes, I wish all of my kids came with a handbook---especially my 15year old daughter! :) I'll be praying for you when my 8yr old sits and bits herself---not because I don't understand her but because she's stubborn!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4903892306148244894.post-6869793794010402272011-06-27T23:38:20.974-04:002011-06-27T23:38:20.974-04:00I so understand where you are coming from with the...I so understand where you are coming from with the safety issue....our son (almost 5 with ds) bolts to the highway if he has a second of freedom :( My other son (6 ds) is a stop, drop, flopper - the best of both worlds I guess :) PLEASE do tell if you find a trick to the potty training. I keep thinking "someday" but still not a flicker of hope yet!Mandyhttps://www.blogger.com/profile/14314402018363684446noreply@blogger.comtag:blogger.com,1999:blog-4903892306148244894.post-81530422547221561962011-06-12T15:59:21.201-04:002011-06-12T15:59:21.201-04:00The ones that I recomend are similiar to what dyno...The ones that I recomend are similiar to what dynovox has to offer but a different company. Glad to hear they are going to evaluate them. JodieAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4903892306148244894.post-7234237019721178822011-06-07T15:02:34.785-04:002011-06-07T15:02:34.785-04:00Hi Stacy, while my kids are not exactly like yours...Hi Stacy, while my kids are not exactly like yours, I have an 8yo with Down syndrome and a 5yo with Autism. I've walked that road of not being potty trained at 5 (little one still isn't), of not being able to communicate (she also can't speak), of the frustration, the pain, the "barely holding on". What is remarkable is that you may not realize it, but your post here is challenging and it made me smile too. I believe that we get to this place in life where we need to unload our burden a bit before we can go on. It'll get better - and worse too, but you're doing the best you can, I can see that. peace to you,<br />gina b<br /><a href="http://mom-blog.com" rel="nofollow">mom-blog</a>ginabadhttps://www.blogger.com/profile/03088452361963571004noreply@blogger.comtag:blogger.com,1999:blog-4903892306148244894.post-8220541856537879372011-06-05T17:24:02.236-04:002011-06-05T17:24:02.236-04:00Thank you for all the nice comments here. Meghan ...Thank you for all the nice comments here. Meghan <3, Missy thank you for noticing how beautiful my boys are :), and Jodie, as of right now we have not tried a communication device. We have only been using sign, but they are far beyond capable of communicating what they are able to sign. Our speech therapist is contacting a DynaVox rep to come and evaluate the boys soon. I never heard of either of the recommended devices you mentioned. I will look into them.. Thanks for suggestion!!!!!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4903892306148244894.post-77247752567948702072011-06-05T14:44:43.069-04:002011-06-05T14:44:43.069-04:00Hello, I just found your site, What an inspiration...Hello, I just found your site, What an inspiration you are. I am a special education teacher and have loved reading some of the stories on here. I was wondering have you tried a communication device for the boys? Either a vantage lite or springboard lite? I have worked with students in the past, this allowes them to be able to communicate. <br /><br />JodieAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4903892306148244894.post-55824752099392346182011-06-04T21:42:10.709-04:002011-06-04T21:42:10.709-04:00I don't have a child with Down Syndrome but I ...I don't have a child with Down Syndrome but I do have twins and another child with a genetic syndrome, 16p11.2 duplication AND autism. There really should be a handbook for "us" moms that fit into more than one category. I have to tell you that your boys are beautiful!Missyhttps://www.blogger.com/profile/06896260121396686017noreply@blogger.comtag:blogger.com,1999:blog-4903892306148244894.post-3202121035874350572011-06-02T22:28:00.753-04:002011-06-02T22:28:00.753-04:00Stacy-
I have never taken the time to tell you wh...Stacy-<br /><br />I have never taken the time to tell you what an inspiration you are to me. I look at these posts that are literally GLOWING with pride about Caleb and Isaac and my heart smiles. I am only 18 months in this journey but I know well the pride a mother feels when he little princes masters something new.<br /><br />That said, this post spoke more to me than most of your others. There are some BIG challenges on this road. I often wonder when Casey and Connor will learn to use a spoon or figure out how to stand independently. I worry over their safety and I wonder if I am doing enough to make sure that they are successful in life. This is a big job. You handle it with grace and compassion and you may not realize it but you are changing lives- mine included. Thank you for sharing these thoughts- it's good to know that the occasional frustrations I feel are normal.<br /><br />You are an excellent mother.<br /><br />=MeghanCasey&Connor'sMommyhttps://www.blogger.com/profile/11560337498390215822noreply@blogger.com