tag:blogger.com,1999:blog-6209411204914238553.post6239085268717684741..comments2023-06-19T10:24:06.335-05:00Comments on More Skees Please: On having Apert syndrome: An interview with my 5-year-oldTarynhttp://www.blogger.com/profile/17301740249699821366noreply@blogger.comBlogger24125tag:blogger.com,1999:blog-6209411204914238553.post-62587222261227847252013-10-28T15:07:50.548-05:002013-10-28T15:07:50.548-05:00Kara - Thanks for commenting. Please tell your fri...Kara - Thanks for commenting. Please tell your friends congratulations...and give them a hug! If they ever want to chat or have any questions at all I am an open book. Just have them shoot me an email: moreskeesplease{at}gmail{dot}com.Tarynhttps://www.blogger.com/profile/17301740249699821366noreply@blogger.comtag:blogger.com,1999:blog-6209411204914238553.post-27176875628622838292013-10-23T06:25:17.742-05:002013-10-23T06:25:17.742-05:00Taryn,
Wow, this is such a great blog. A few day...Taryn, <br /><br />Wow, this is such a great blog. A few days ago, some of our best friends gave birth to a boy with Apert. They have a 1-year-old girl at home and are currently reeling from the news. I found your blog and will pass it along to them. It's so informative and inspiring! Thanks for adding something so valuable for parents and friends of children with Apert. <br /><br />KaraAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-6209411204914238553.post-79132488038240004702013-04-13T16:21:52.136-05:002013-04-13T16:21:52.136-05:00I watched your video a few minutes ago with my thr...I watched your video a few minutes ago with my three year old daughter, she asked to watch the video "of the boy with the big smile" again. You are doing an amazing job and your son is an inspiration. I love reading about you guys! Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6209411204914238553.post-67531832630886086042013-04-11T21:03:29.876-05:002013-04-11T21:03:29.876-05:00I said it in my last comment but it bears repeatin...I said it in my last comment but it bears repeating. You are an awesome Mom! You have obviously raised your boy with such a sense of self and purpose as a child of God. I hope that my children feel so loved and special to God.<br />Pretty savvy kid there!<br />:-)<br />TraciStarTracihttps://www.blogger.com/profile/02119043204191845721noreply@blogger.comtag:blogger.com,1999:blog-6209411204914238553.post-44357209705927628012013-04-11T13:59:15.881-05:002013-04-11T13:59:15.881-05:00Your posts are really inspiring for me as a Mama t...Your posts are really inspiring for me as a Mama to children with special needs. I haven't really mentioned it before but two of our girls have a syndrome that makes them different from typically developing children. At 3 1/2 years old, they don't know the name of of what they have, but I have explained a few things to them as they are relevant. Like they are often called babies by other children, so I have started teaching them to say, "I am 3. I am a big girl." And I have started explaining why they go to certain doctors and receive a certain medication. It's hard as a Mama because I don't see them any differently than their siblings without special needs, but I know the world doesn't always see them as normal. Right now, they are just so happy, and I wish I could bottle that up and save it for the times when they might be made to feel badly for who they are. Anonymoushttps://www.blogger.com/profile/18074723385090544014noreply@blogger.comtag:blogger.com,1999:blog-6209411204914238553.post-73004590061831074622013-04-10T16:37:00.095-05:002013-04-10T16:37:00.095-05:00Thanks for the support everyone! :)Thanks for the support everyone! :)Tarynhttps://www.blogger.com/profile/17301740249699821366noreply@blogger.comtag:blogger.com,1999:blog-6209411204914238553.post-42751736926148204342013-04-09T23:25:26.972-05:002013-04-09T23:25:26.972-05:00I just posted but I forgot to say that your story ...I just posted but I forgot to say that your story really moved me. You are really gifted at writing and your web page is REALLY good. I stumbled upon your page by doing a search on the Dr. Oz detox and then spent A LOT of time reading your blogs. So I just wanted to say that you have succeeded in educating someone in Edmonton Canada and you are doing a great job sharing your story. God bless!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6209411204914238553.post-23784173230755770182013-04-09T23:09:16.264-05:002013-04-09T23:09:16.264-05:00mama bear, you are an amazing woman. Your little b...mama bear, you are an amazing woman. Your little boy is super lucky to have come into your family. Although he will have many challenges with acceptance in his life, he is learning all the right things from you, you are doing a great job. I will be talking to my 6 year old tomorrow about this, my heart would be broken if she was ever mean to someone just because they looked different. best of luck to youAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-6209411204914238553.post-75872258903827441512013-04-09T14:00:59.355-05:002013-04-09T14:00:59.355-05:00That kid is amazing! He is an awesome, confident ...That kid is amazing! He is an awesome, confident kid, and he's fun to be around. He will prevail. Kristinhttps://www.blogger.com/profile/13598792501741861659noreply@blogger.comtag:blogger.com,1999:blog-6209411204914238553.post-55151282913989118472013-04-08T10:40:50.116-05:002013-04-08T10:40:50.116-05:00Taryn--This is a beautiful piece, so touching, and...Taryn--This is a beautiful piece, so touching, and beautifully written. I appreciate that you steer clear of sentimentality both in your writing and your discussions with Aiden. I feel for you with kindergarten coming up. It's a big step for any parent but especially so for you guys. Please keep us "posted." Virginia Woodruffhttp://greatmomentsinparenting.com/noreply@blogger.comtag:blogger.com,1999:blog-6209411204914238553.post-57782178589323996132013-04-08T07:36:20.634-05:002013-04-08T07:36:20.634-05:00I love this post. Aiden is so handsome! Thank yo...I love this post. Aiden is so handsome! Thank you for sharing.Margaret Mederhttps://www.blogger.com/profile/12627437304579927567noreply@blogger.comtag:blogger.com,1999:blog-6209411204914238553.post-32709128743511432382013-04-06T21:30:36.039-05:002013-04-06T21:30:36.039-05:00I had to watch his video introduction a couple tim... I had to watch his video introduction a couple times because he's just too cute...or handsome I should say in his own words. I love his answers too-you guys must be so proud of him!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6209411204914238553.post-18175315638583865152013-04-06T20:29:54.681-05:002013-04-06T20:29:54.681-05:00He sounds like an amazing little boy! And he is ab...He sounds like an amazing little boy! And he is absolutely adorable. :)Kimberlyhttps://www.blogger.com/profile/13747060443039706105noreply@blogger.comtag:blogger.com,1999:blog-6209411204914238553.post-46112591340503312522013-04-06T19:58:47.890-05:002013-04-06T19:58:47.890-05:00Sounds like a happy boy to me!
We actually don&#...Sounds like a happy boy to me! <br /><br />We actually don't talk much about Jack's differences, not any more than his sameness. I imagine he'll have more questions as his awareness of others grows.Mariehttps://www.blogger.com/profile/16158883265713752481noreply@blogger.comtag:blogger.com,1999:blog-6209411204914238553.post-35675063938939306362013-04-06T15:38:32.473-05:002013-04-06T15:38:32.473-05:00What a beautifully-written, heart-felt story of a ...What a beautifully-written, heart-felt story of a portion of your journey with Aiden! I have a 27-year-old son with multiple special needs, and your experiences in so many ways mirror my feelings and thoughts. You are doing an amazing job of mothering this very special young man you have been gifted with. God bless you all!!!Janet Hertznoreply@blogger.comtag:blogger.com,1999:blog-6209411204914238553.post-45483856141818292022013-04-06T15:05:47.900-05:002013-04-06T15:05:47.900-05:00I also loved your post. Hiding the facts from your...I also loved your post. Hiding the facts from your intelligent little guy will inly protect him for so lobg. I think (and hope) you will be pleased with what you see in kindergarten. Today is a new time... much different than 20 and 30 years ago. My children dont see any of their peers as weird or ugly or damaged.... just that EVERYbody is different... its truly awesome to see the young kids completely accept each other for who they are!!! I really think it will make you proud of our future... now... fifth grade... that's a different story, but at least you have time to make your son even stronger!!!Anonymoushttps://www.blogger.com/profile/18220276095933556826noreply@blogger.comtag:blogger.com,1999:blog-6209411204914238553.post-60843640660730029262013-04-06T14:40:12.181-05:002013-04-06T14:40:12.181-05:00A former student had a large port Wine stain birth...A former student had a large port Wine stain birthmark covering much of one side of his face. His mother explained that she told him the story of the Persian carpet-makers. They are masters of their craft, capable of making a perfect rug, but they never do--always including a small imperfection to reflect their belief that only God is perfect. She told him that every person has some imperfection too, but he is fortunate that his is something like this, which does not affect how he is as a person, instead of a less visible imperfection of character which can make some people ugly on the inside.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6209411204914238553.post-20958601643839520902013-04-06T12:13:23.147-05:002013-04-06T12:13:23.147-05:00Love love love this! He has a beautiful heart and ...Love love love this! He has a beautiful heart and you're doing a great job making sure he knows that God made him the way he is for a reason. He is a world changer!<br /><br />countitalljs.blogspot.comJasminehttps://www.blogger.com/profile/05368835489048927127noreply@blogger.comtag:blogger.com,1999:blog-6209411204914238553.post-89070229357500805982013-04-06T10:35:01.589-05:002013-04-06T10:35:01.589-05:00Love, love, love your little guy!Thanks for postin...Love, love, love your little guy!Thanks for posting this beautiful interview with your amazing son. Our daughter Ayshe is 4 with Apert syndrome. The stares and comments are difficult but we are trying to surround her with many people who love and adore her and build her sense of self-worth as you are with Aiden. Thanks so much for sharing with us. He is beautiful!Patty Bolesnoreply@blogger.comtag:blogger.com,1999:blog-6209411204914238553.post-43078978611046956232013-04-06T09:54:46.316-05:002013-04-06T09:54:46.316-05:00He is Perfect ;)
He is Perfect ;)<br />Lisa Bockhttp://www.apert.org/bocknoreply@blogger.comtag:blogger.com,1999:blog-6209411204914238553.post-59641703030372816622013-04-06T09:00:34.505-05:002013-04-06T09:00:34.505-05:00I just love his answers! It's very clear that ...I just love his answers! It's very clear that he has loving parents and family! I love that book you made for him and hope his class next year love him as much as we do!robinhttps://www.blogger.com/profile/16004240577952462737noreply@blogger.comtag:blogger.com,1999:blog-6209411204914238553.post-83103254363190798612013-04-06T08:30:05.294-05:002013-04-06T08:30:05.294-05:00You are an unbelievable mother and give us moms so...You are an unbelievable mother and give us moms so much insight...anytime Ricky posts these on FB I go to read them and each time I am just as emotional and amazed at your writing skills! Keep it up...you are helping so many others in the process!Shalon Murphynoreply@blogger.comtag:blogger.com,1999:blog-6209411204914238553.post-36546503662834053792013-04-06T08:15:35.130-05:002013-04-06T08:15:35.130-05:00Taryn,
What a beautifully written post! I cried ...Taryn,<br /><br />What a beautifully written post! I cried after reading Aiden's interview.<br />I think you are doing everything right for his world, and he will end up being more confident because of it. What a great mommy you are!<br />LeahLeah Smithhttp://www.txkidskitchen.comnoreply@blogger.comtag:blogger.com,1999:blog-6209411204914238553.post-16417499683909528592013-04-06T07:41:34.963-05:002013-04-06T07:41:34.963-05:00Our almost 5 year old has a hemangioma on her face...Our almost 5 year old has a hemangioma on her face. We've been talking to her about it for as long as I remember. She can say the word & knows what it is, but it still bothers her to be different. I'm anxious to see what kindergarten brings this Fall, but hopeful that we've given her enough tools to deal with any taunts that might come her way. Thanks so much for sharing Aiden's story and voice. Mama Melchhttps://www.blogger.com/profile/09756297260590217633noreply@blogger.com