tag:blogger.com,1999:blog-401303964563152307.post2192643679745976507..comments2024-03-28T21:36:55.157-04:00Comments on Love That Max : Is it wrong to blog about your child with special needs? I say no. Ahem.Ellen Seidmanhttp://www.blogger.com/profile/01433429847255621203noreply@blogger.comBlogger42125tag:blogger.com,1999:blog-401303964563152307.post-62602845342317505172012-02-08T00:47:04.655-05:002012-02-08T00:47:04.655-05:00I think its ok to blog about your loved ones. I do...I think its ok to blog about your loved ones. I don't see anything different from how people post pics and there status about there families on Facebook. I have a blog about parenting and being daddy.junior81https://www.blogger.com/profile/07232508507670262111noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-21758014848593684192011-06-25T01:35:35.078-04:002011-06-25T01:35:35.078-04:00You are absolutely right Ellen, there is nothing w...You are absolutely right Ellen, there is nothing wrong on blogging your child.!!Blogging the talents and activities of your child would really amaze your readers, its cute rather.<br /><a href="http://informacionsobreloshemorroides.com/" rel="nofollow">Hemorroides</a>Alana Martinezhttps://www.blogger.com/profile/16174893849889166439noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-27882813857170788592011-04-14T17:21:50.218-04:002011-04-14T17:21:50.218-04:00I agree, Ellen. I've been wondering about thi...I agree, Ellen. I've been wondering about this myself, going back and forth about blogging about my two boys on the autism spectrum. The oldest one actually subscribes! The younger one doesn't comprehend what a blog is, but when he sees stories about himself and reads the stories, he smiles. <br> I just keep in mind that my oldest is reading it, and if I wouldn't want him to read what I'm writing I don't write it.Elizabethhttp://www.elizabethgivler.comnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-47699735084337691862011-04-13T08:44:43.887-04:002011-04-13T08:44:43.887-04:00I completely agree...I think it's great and he...I completely agree...I think it's great and helps immensely.Tiffanyhttp://www.elastamom.comnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-27430979756869837732011-04-13T08:41:07.820-04:002011-04-13T08:41:07.820-04:00I think you & your commenters covered everythi...I think you & your commenters covered everything - I've found great comfort in my microscopic little corner of the internet. And I'll probably also ratchet back as the kids get older. Maybe I'll start writing about knitting or something (I jest). <br /><br />I do want to throw one more thing in the ring since I just wrote about it - the i-net can be a tremendous resource for the shy, introverted and/or busy mom. I can't do playgroups re work, plus I develop a charming stammer in crowds, but I found a community anyway. That's worth something.krlrhttps://www.blogger.com/profile/14392064691347464660noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-12727784747427143592011-04-12T15:45:52.847-04:002011-04-12T15:45:52.847-04:00Love this post Ellen (and obviously agree, since s...Love this post Ellen (and obviously agree, since starting my own blog, inspired by yours!)<br />I also love Ms. Anonymous' comment. It brought tears to my eyes:<br />"As an adult, I've come to realize that special needs kids aren't a burden at all. They bring as much joy and laughter as my child does. And isn't that the real purpose of life anyway - uplifting others, improving ourselves and spreading joy while we do it? I think Max has got that down."Shastahttps://www.blogger.com/profile/01013565031179610593noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-26010717569498621372011-04-12T14:58:39.279-04:002011-04-12T14:58:39.279-04:00Ellen, I got my ass chewed by some a-hole busybody...Ellen, I got my ass chewed by some a-hole busybody who sent me an ANONYMOUS email because I LET MY KIDS PLAY IN THE BACK YARD "UNSUPERVISED." The yard has a fence and a gate, but NO, I have s#!t to do, so I don't sit out there like a helicoptering idiot while they played in the snow. The coward obviously knows me, but he or she (probably she--I have a good idea who it was, that jerk from my kids' horrible experiment with private school) went to the trouble of making a hotmail account to "scold" me about not being present with my children even though I can see them from the kitchen sink. <br /><br />People are always going to criticize, because that's one thing the internet does--makes it easy for some blowhard jerk who doesn't even know a damn thing about your life to wag their finger and look down their nose. Screw them. Do what you think is best. Thank YOU for sharing your life with us. You have helped more people than you will ever know. If I had any talent for writing and anything interesting to say and the time in the day, I'd blog too. It's a great way to communicate in these Never-Enough-Times!Felicianoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-16474245912157306352011-04-12T00:27:50.711-04:002011-04-12T00:27:50.711-04:00you are brave in ways i can not be. it scares me t...you are brave in ways i can not be. it scares me to tell the entire world about my kid. he has such a difficult road to hoe . it wold be easy to make him a poster boy for special-needs an advocate for the cause on all fronts. i just do not have the courage to take the risk. but i thank god every day there are those out there like you who can find the courage to give us such a personal voice. also so that we know we are not alone.The Advocacy Agencyhttps://www.blogger.com/profile/12947360507793915969noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-53985449501242603832011-04-11T22:37:34.573-04:002011-04-11T22:37:34.573-04:00Amen! I find blogging about my son helps both of u...Amen! I find blogging about my son helps both of us by building a community of individuals in similar situations. The exchange of information and ideas has benefits that are immeasurable and it is so important to raise awareness. And the therapeutic effect is definitely an added plus...<br /><br />Thank you for your blog and your ideas. You do make a difference.mama to j and beanhttps://www.blogger.com/profile/13242975146692216066noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-2598055059745924002011-04-11T21:22:45.223-04:002011-04-11T21:22:45.223-04:00I mean nay its not wrong t blog about it, yay for...I mean nay its not wrong t blog about it, yay for you. Oops....coffeemomhttps://www.blogger.com/profile/12332220347018136072noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-30667259566552754782011-04-11T21:20:48.062-04:002011-04-11T21:20:48.062-04:00What Barbara said:" out your oxygen mask on f...What Barbara said:" out your oxygen mask on first". <br /><br />I struggle and waffle w this stuff all the time; having many kids & several w special/different needs. But again and again I come to the idea that while I never want to embarrass my children .... The concept of "hiding away " or not talking about the very issues which are the warp and weft of our family day & life is disingenuous at best and really, at worst, adds to the stigmas that are still attached due to ignorance. Its like not saying "black" about my African American children or doing gymnastics to not mention skin color. Its ridiculous, its part of them, our family. Are they DeFINED by their disability? No. But to refuse to address the very real issues for them and for us/me is to also make them less than in its own way. <br /><br />I'm tired if having to whisper " developmental delay" or " intellectual disability" or even "ADHD". Sheesh. So they have impulse issues,meds, cognition glitches,.... They also are caring and empathetic and funny and creative,And aggravating, and love hot dogs and cake, and are scared of spiders...or love purple to distraciton. Or pink. <br /><br />Amen to this post, your stance and this blog. It's a gift to me, so thank you!!! I vote yay.coffeemomhttps://www.blogger.com/profile/12332220347018136072noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-25229280302830146682011-04-11T21:20:21.867-04:002011-04-11T21:20:21.867-04:00Paula Kelley -- I don't know if you'll che...Paula Kelley -- I don't know if you'll check back here and you didn't leave a link... but if you do come back, please get in touch! My 6-year-old daughter has linear nevus sebaceous syndrome as well, and I blog at <a href="http://elvis-sightings.blogspot.com" rel="nofollow">Elvis Sightings.</a><br /><br />Obviously, I don't think it's wrong to blog! The connections are so valuable!JoyMamahttps://www.blogger.com/profile/15073328328434957851noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-83523393090078515692011-04-11T16:41:49.065-04:002011-04-11T16:41:49.065-04:00Well I am very careful with my blog, with pictures...Well I am very careful with my blog, with pictures etc. I have C.P. and when I turned 18 (I live in Canada) it sort of felt like I fell off the edge of the planet. Alot of the services I had grown used to weren't funded anymore. I think that blogs such as yours are great because they help people feel less alone. I use a pen name so nobody knows my name but that's just a personal choice. My blog is http://www.accessibilityincanada.blogspot.com/.Toonerhttps://www.blogger.com/profile/13035308590730363327noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-34436107376842041092011-04-11T14:28:10.703-04:002011-04-11T14:28:10.703-04:00P.S I hope I didn't offend anyone in my comme...P.S I hope I didn't offend anyone in my comment. I just really have learned so much from you and sometimes I can't express myself clearly!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-28823970128470236392011-04-11T14:23:04.083-04:002011-04-11T14:23:04.083-04:00I have a "typically developing" child. ...I have a "typically developing" child. <br /><br />Your blog has taught me a lot about special needs children...that they are just like other children. They love to laugh and dance and sing just like my kid does. (I really loved when Max sang with his music therapist.)<br /><br />Honestly before I came across your blog I had no idea what life for a person with CP would be like. I don't know anyone with CP and if I did I wouldn't feel comfortable asking them what their life is like because with my own bumbling way of talking I'm sure I would offend them in my efforts to understand. Your blog has a way of lifting up the curtains and saying this is what our life is like...just like yours. It breaks the silence and kills the stigma.<br /><br />Growing up my parents were very sympathetic to those with special needs. The message I received was that we should feel "sorry" for them. As an adult, I've come to realize that special needs kids aren't a burden at all. They bring as much joy and laughter as my child does. And isn't that the real purpose of life anyway - uplifting others, improving ourselves and spreading joy while we do it? I think Max has got that down.<br /><br />When Max realizes that you've written about him, I think he'll be so proud to see how much change he's been able to effect by just being himself.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-23633674593395300642011-04-11T13:20:20.721-04:002011-04-11T13:20:20.721-04:00What Katy said.
Children are not equal partners...What Katy said. <br /><br />Children are not equal partners in what we decide for their lives - where to live, what to eat, which school to attend - for as long as they are dependent on us. There are ample other ways to protect them online making blogging a measured risk. <br /><br />Re: the emotional benefit that parents garner from blogging - that helps the child, too, I think. Put the oxygen mask on yourself first. <br /><br />BarbaraTherExtrashttp://www.therextras.comnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-83693894720651488622011-04-11T13:05:38.752-04:002011-04-11T13:05:38.752-04:00After Ethan's stroke in utero...I felt alone, ...After Ethan's stroke in utero...I felt alone, even with tons of support from family and friends. I didn't know any other person who this had happen to. Then I read the article in a parenting magazine which provided your blog site. From reading your blog, I then looked around on facebook and read other people's blogs about babies having strokes. It was exactly what I needed. That eas a direct result from you blogging about your child!Vanessa Moorehttps://www.blogger.com/profile/06635131912167190098noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-51567924683835423982011-04-11T12:41:02.551-04:002011-04-11T12:41:02.551-04:00You should read the Free Range Kids blog, as free ...You should read the Free Range Kids blog, as free range parenting a special needs child is an art form. Please continue writing. As the parent of a child with Down Syndrome I love your blog.Unknownhttps://www.blogger.com/profile/18221660194745621073noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-74850354835341047932011-04-11T12:08:39.544-04:002011-04-11T12:08:39.544-04:00I don't think it is wrong. We're not belit...I don't think it is wrong. We're not belittling our kids or mocking them. We are sharing aspects of our lives, struggles, achievements, concerns but all in love. Yes, even those days when we admit we are tired or drained or wish it was easier. And your words, and those of other bloggers, do help other parents. Even if it is just to know we are not alone.<br /><br />Keep writing, your love for Max shines in your writing.<br /><br />LynnPenblethhttp://penbleth.co.uknoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-85851400562784175922011-04-11T10:43:05.353-04:002011-04-11T10:43:05.353-04:00This is pretty much exactly how I feel.This is pretty much exactly how I feel.Stimeyhttps://www.blogger.com/profile/09685801693683588805noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-29620951005187032042011-04-11T10:30:20.197-04:002011-04-11T10:30:20.197-04:00Yay! Here's why. I started my blog as a way to...Yay! Here's why. I started my blog as a way to inform my family (who ALL live in other states) of what we expereince and of Oia's progress, etc. I view my little slice of cyber space as a virtual scrap book that one day Oia will have to read for herself and without doubt, I know she will feel the unconditional love and fight that I/we have for her. In addition, all the encouraging comments from far and wide will be her source of inspiraction one day too but for now, those comments drive me and that's a huge deal on this crazy journey in a "special" world.<br /><br />Blog on, my friend. Love you and Ur-ul Max!Mohttps://www.blogger.com/profile/10083710958029714414noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-20066333962582629652011-04-11T10:05:54.937-04:002011-04-11T10:05:54.937-04:00Wow, I only recently found this blog and I can'...Wow, I only recently found this blog and I can't stop reading it. Our son, Robbie, is 32 years old and when he was born in 1978 there were absolutely NO resources for us....very little information at all. Our pediatrician managed to find an article in an ancient medical book and made us a copy. I STILL have that dog-eared copy. Robbie's diagnosis is Linear Sebaceous Nevus Syndrome. At birth, all seemed fine....Apgar score of 10 and we were on cloud nine. One month later he began "twitching" and while I recognized this was out of the ordinary, I didn't allow myself to think "seizure". However, seizures became obvious when the infantile spasms/myoclonic seizures began. Our lives have never been the same.<br /><br />All of this long-windedness (I think I just made up a word!) to say that I feel blogging about our special needs children is a blessing and a comfort to so many...if only it had been available so many years ago! And identifying the child by name and using photos is, in my opinion, necessary to the readers in order to humanize what would otherwise be just words on a page. Thank you so much for giving yourself to others!Paula Kelleynoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-2428908604314305462011-04-11T09:51:30.471-04:002011-04-11T09:51:30.471-04:00Writing my blog and reading others has done a worl...Writing my blog and reading others has done a world of good for me as the parent of a special needs child. Frankly, I think the "real world" carries far more risks to my child than my blog does. I do filter what I say....always thinking of my kids before I write something. I will be over the moon with happiness if Sam is ever able to read or understand my blog. Everything I write is written out of love for her.Anonymoushttps://www.blogger.com/profile/11405672449157495022noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-77884254758580140202011-04-11T09:45:16.777-04:002011-04-11T09:45:16.777-04:00Exactly!!! Thank you! Thank you very much.
I rece...Exactly!!! Thank you! Thank you very much.<br /><br />I recently had a very similar experience with an opinionated mom and blogged about it.<br />It's only my second posting so be warned. :)<br />http://abearaladybugandapeanut.wordpress.com/<br /><br />BTW, your blog was one of the ones that inspired me to take on this endeavor, so thank you for that!<br /><br />JenCanadian Momhttps://www.blogger.com/profile/03947101601713775887noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-23273087550438928642011-04-11T09:35:52.854-04:002011-04-11T09:35:52.854-04:00I think you said it nicely for so many of us who d...I think you said it nicely for so many of us who do blog about our children. I find that I don't write a lot on my blog when things are incredibly difficult or Nik is goig through some significant health issues. I may write about them in slightly vague ways after the fact, but I am sensitive to NOT sharing things which are best left private for Nik's sake.Niksmomhttps://www.blogger.com/profile/14715465327343655483noreply@blogger.com