tag:blogger.com,1999:blog-401303964563152307.post9194179851152613632..comments2024-03-28T03:35:52.176-04:00Comments on Love That Max : Those times that make you wonder: Why didn't we get the happy ending?Ellen Seidmanhttp://www.blogger.com/profile/01433429847255621203noreply@blogger.comBlogger62125tag:blogger.com,1999:blog-401303964563152307.post-72714983623514093962014-01-03T13:42:33.793-05:002014-01-03T13:42:33.793-05:00Do you ever compare your child to other kids with ...Do you ever compare your child to other kids with the same diagnosis? No because I dont want to sound like a ungrateful whiner. Spastic monoplegia is so mild. Amelia is doing well despite her disability. <br />When I'm down, I compare her to other folks with other kinds of spastic CP. I've found it reminds me to look beyond it and realise she's doing well. Taranoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-12871065696114811152010-09-11T02:30:07.260-04:002010-09-11T02:30:07.260-04:00ALL THE TIME!
Especially my Mom ... I do it too. ...ALL THE TIME!<br /><br />Especially my Mom ... I do it too. I get annoyed when other parents say, oh they did this and that, why don't you try it? <br />We tried it...our child is different. It didn't work.<br /><br />And our heart breaks that it didn't ...Devina Divechahttp://autismandus.posterous.com/noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-37713373318994822782010-08-29T15:12:03.290-04:002010-08-29T15:12:03.290-04:00All the time. It's so hard and I feel bad for ...All the time. It's so hard and I feel bad for doing it but, like you, I dont' wish anyone harm with my thoughts. As Green Girl and other moms said I do look for adults with similar diagnosis and hope more will speak out. Moms and kids alike need to know the varied levels of success that are possible.DWrightnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-78546396123998201642010-08-24T19:48:34.057-04:002010-08-24T19:48:34.057-04:00I have a child, a boy, with Autism. You betcha, I...I have a child, a boy, with Autism. You betcha, I compare. Usually its, I hope he never develops elopement...I can't handle that, I can handle pacing. Thank God...<br />Everyone compares, its called keeping up with Jones. It happens.<br />I often wonder what he would be like as NT (neuro-typical). I used to more so than I do now. I say that because I have noticed how much my husband has ASD traits. He has learned to cope and blend and bend into life quite sucessfully. I have have those same hopes for my son, to be like his dad. Besides, ASD can be pretty cool, when you let it, and when others get it.Elle2702https://www.blogger.com/profile/16942051870331202721noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-76849083074650345052010-08-22T09:58:45.469-04:002010-08-22T09:58:45.469-04:00the comparing is hard, because it's totally hu...the comparing is hard, because it's totally human nature and there's no way <i>not</i> to do it. But the guilt! <br /><br />I do applaud Parents for running the story, but I also think magazines look for stories with a neat happy ending.Catehttps://www.blogger.com/profile/16248485766805270628noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-54608279819098728102010-08-21T22:33:48.841-04:002010-08-21T22:33:48.841-04:00Kuddo's for you for getting a mention in Paren...Kuddo's for you for getting a mention in Parents. I read the article and had many mixed feelings about what was written. It is amazing that their child has been able to overcome many of the issues that the stroke had caused. I just wonder if it would give parents reading it false hope and a sense that 'therapy' will fix their child and that if there was not progress it was from a lack of their doing. <br />I believe very strongly in early intervention and how crucial it is but it will not 'cure' all our children. I wish they had added another story as well of a child/family who continue to be affected by their child's early brain damage. We could give them a couple names of some cute kids we know.BusyLizzyMomhttps://www.blogger.com/profile/09116803603107554804noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-38169991851497257382010-08-21T18:33:16.146-04:002010-08-21T18:33:16.146-04:00Do you find yourself looking at your child and vis...Do you find yourself looking at your child and visualizing him NT, how he'd behave, how he'd sound, what questions would he ask, would he be really funny or good at sports, perhaps a great artist? I do this too often, especially now around birthday-time. <br />My boys were hospitalized for a couple of years, so many preemies came and went and I felt the bite each time. Another trigger for me is seeing NT twins. The other day, in one single outing I'd seen at least 10 sets of typically- developing twins. Waltzing past us with their matching clothes, staring at my dudes.<br />No doubt I feel envious. Then I feel bad for those feelings, then sad, sorry for the boys, sorry for myself, sorry for my own parents who feel sorry for all of us... and then I go over and kiss my boys on their soft, chubby cheeks and feel better all over again. <br /><br />We just do, and they just are. I think the most painful thing, and one of the reasons I seek bonding with alike parents, is the future. I'm already a slightly older mom. I already feel worn-down. I still have a long time to go to have these feelings and intrusive thoughts. And then I'm too old, and then what? <br /><br />Oh big hugs, Ellen. Hugs for Max too, for being so awesome and especially handsome. And hugs for all the moms/dads in our boat. Oh hell, hugs for everyone!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-13228054732924270542010-08-21T01:51:21.648-04:002010-08-21T01:51:21.648-04:00Yep... and nice to know I'm in good company!Yep... and nice to know I'm in good company!Meriahhttps://www.blogger.com/profile/13495074138385568379noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-46965257012824287552010-08-20T13:47:09.819-04:002010-08-20T13:47:09.819-04:00yup. it's hard. when I see worse kids, I pra...yup. it's hard. when I see worse kids, I practically break out in tears, thinking about what could have been. Not immediatley. I smile at them because they are just doing what we do, taking one step at a time. <br />the majority of kids we see or that I read about that have special needs seem to be able to do much more then LJ. but then I read a few posts here and there about certain surgeries or illnesses and I remember to count my blessings, because LJ has been a pretty healthy kid.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-52526258159033957322010-08-20T03:25:49.491-04:002010-08-20T03:25:49.491-04:00Hope this comment doesn't get lost in the moun...Hope this comment doesn't get lost in the mountain above it but we compare too and we grieve for the little 4 year old who should be chattering and running and whining and peeing on the toilet seat. <br /><br />But we also look at Ashley as a blessing. A gorgeous loving boy who befriends everyone he meets with just a look. Once you accept his development is oh so slow, every milestone is a victory.<br /><br />I'm not teaching my Granny to suck eggs here. It's the half a glass full thing. Sometimes we all get lost in the comparison game and need to refocus on the sweet chunk of humanity who is enhancing our lives.<br /><br />Thanks for the blog. XXdderbydavehttps://www.blogger.com/profile/07448901859808979140noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-45730796777446251222010-08-20T02:43:10.106-04:002010-08-20T02:43:10.106-04:00Yes often. I don't know other kids with such ...Yes often. I don't know other kids with such severe problems as Smiley - I know they exist, but they seem to be hidden away. And now my aspie boy seems to be getting 'worse' all the time, and you just wonder where is it all going to end?Looking for Blue Skyhttps://www.blogger.com/profile/10010049814419812468noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-76866723480425271262010-08-19T22:40:10.267-04:002010-08-19T22:40:10.267-04:00I know. We were supposed to see changes to, by thi...I know. We were supposed to see changes to, by this age: not regression. WHich is what we have.<br /><br />It's one thing to have the early childhood diagnosis, then you deal with that, but when you've spent over 10 years "hoping" and this happens?<br /><br />CRUSH.Alexandrahttps://www.blogger.com/profile/00609629888008025050noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-70154090319209837262010-08-19T21:48:38.038-04:002010-08-19T21:48:38.038-04:00I wanted to add somethign to my earlier comment:
...I wanted to add somethign to my earlier comment:<br /><br />I think it's human nature to compare and to grieve the loss of what we perceive as our "perfect" or "normal" child. I don't think it's fair to blame the media for that. I know there have been many cases in my own experience where health care practitioners have, with the best of intentions, shared stories of hope, or "successes" with me. I think those who don't walk in our shoes are so uncomfortable with the idea of how they THINK we handle it (as in "OMG, I don't know HOW you do it! I could NEVER...") that they cannot fathom anything less than a happy ending being okay. I think the media is merely a reflection of what the majority of society wants to hear. Do I think it's a good thing? No. But I can't entirely blame the media.Niksmomhttps://www.blogger.com/profile/14715465327343655483noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-1696790829027510962010-08-19T21:39:06.093-04:002010-08-19T21:39:06.093-04:00are you kidding me...we all compare, but i think t...are you kidding me...we all compare, but i think the most important thing, though we compare progress is to never compare GRIEF! we all grieve the losses that our precious babies have experienced because of their issues, their strokes, their retardation, their syndromes, their autism, their cerebral palsy, and on and on...whether they have a learning disability or are wheelchair bound for life...they are OUR baby and for them to suffer ANY pain, any setback...we, as their mother, we grieve it, for them and for us! but it would be dishonest to say that we do not see the success stories and long for that to be our baby, our daughter, or our son...so, bring down the hammer on the guilty side for those "sins" for me, because i would much rather be found wanting there, than to be found guilty of not wanting everything for my girl! you are a delightfully human mother, loving in every way and i applaud your vulnerability in writing this post! (i met you at the billmelater booth at blogher with sara parker - fyi!) thanks!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-26081329818398886892010-08-19T21:00:19.745-04:002010-08-19T21:00:19.745-04:00Oh @ anonymous a couple of comments up. I play th...Oh @ anonymous a couple of comments up. I play that blog game as well! Glad I'm not the only one ;)The Boydshttps://www.blogger.com/profile/17734578890361337666noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-68257960316332567542010-08-19T20:46:17.336-04:002010-08-19T20:46:17.336-04:00I just wanted to thank you. Reading your blog toda...I just wanted to thank you. Reading your blog today, while I was catching up on everyone, was a tipping point I needed to take a step I needed to take.<br /><br />Thanks for being so open and vulnerable...it means a lot to many people. Especially me.blogzillyhttps://www.blogger.com/profile/08268388544631653375noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-73573084057844982822010-08-19T20:36:30.929-04:002010-08-19T20:36:30.929-04:00I'm still learning not to compare him to other...I'm still learning not to compare him to other regular developing children let alone other children with similar things going on. I'm still searching on how to make peace with this.The Boydshttps://www.blogger.com/profile/17734578890361337666noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-58502693415785646422010-08-19T19:30:24.430-04:002010-08-19T19:30:24.430-04:00All the time! I used to feel guilty about my perfe...All the time! I used to feel guilty about my perfectly normal 28 weeker (who's now almost 8) who went thru so much during the first year of her life, but now is amazingly normal (and in fact quite tall for her age!) Now with my little Jack, I compare him all the time to other kids and wonder "when will he sit?" or How come that kid can do this but jack can't? However, with PVL (his medical diagnoses at birth which caused the CP) I know it's common to have WAY more health issues than he has...so I know I'm also very lucky.Jana Weaverhttps://www.blogger.com/profile/11492118205706353318noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-45780756734405466982010-08-19T18:42:44.986-04:002010-08-19T18:42:44.986-04:00I have a game I play when I'm in a bad place.....I have a game I play when I'm in a bad place...it's called find all blogs about kids with PVL, look back to when they are my son's current age and compare where they were then to what they are doing now. I like to do it in the middle of teh night to hide it from my husband. I'm also sort of embarrassed to admit how good I am at it. Locating the birthdate or the month that they have their IEP meetings, then look back in those months in prior years. <br /><br />But, when I read this comment, it made me think more so about our official meeting with the head of our NICU to give us the overall picture on our son after his event, telling us about his extensive brain damage, and actually, he was a real positive guy but sort of in a harsh way...telling me to stop mourning and all about plasticity, etc. etc. I remember when he was finished with his speech, I said... OK, neuroplasticity, I want to go that route, that sounds great...how do we do that? Silence.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-82031866674886059132010-08-19T17:57:10.896-04:002010-08-19T17:57:10.896-04:00I have to stop myself comparing my older autism sp...I have to stop myself comparing my older autism spectrum son to my younger 'neurotypical' son all the time. They are so different, and it does make you wonder why.<br /><br />I try not to compare. I really try. Because, for me at least, it seems kinda like picking at a scab. It's not pretty and it's not at all healing.Jennyhttps://www.blogger.com/profile/08986080963534940625noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-68525402563474479052010-08-19T15:07:41.032-04:002010-08-19T15:07:41.032-04:00Of course. There was a story not too long ago abo...Of course. There was a story not too long ago about a boy who had a near-drowning accident and made a COMPLETE recovery. I couldn't even deal. We did not get a "happy" ending in the eyes of the media, because you'd never find our family in the news like that - most people wouldn't consider us a "happy" ending. I wish it had been us, but it isn't.ferfischerhttps://www.blogger.com/profile/00184449747019920745noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-35779071392012800282010-08-19T14:12:52.562-04:002010-08-19T14:12:52.562-04:00Ellen I thought of Max immediately when I read tha...Ellen I thought of Max immediately when I read that article in Parents Mag. I wish they would publish stories that don't always have a happy ending and how "we" as families deal with life!<br /><br />I know you are a vetern at dealing with emotions like this as Max is so much older than Vinny. I still and figure I will always struggle with this! I am so happy for other kids with his same syndrome that are more advanced then him, but secretly I feel those pains in my heart start to creep up!<br /><br />Every day when Vinny smiles at me, I am reminded that I am lucky to have him healthy and happy and to just try and enjoy him for how he is!<br /><br />HugsStacihttps://www.blogger.com/profile/11072196865353305350noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-27395344092652923752010-08-19T14:07:08.159-04:002010-08-19T14:07:08.159-04:00Sweetie, the point I didn't make, I guess, is ...Sweetie, the point I didn't make, I guess, is that PARENTS magazine wouldn't have chosen a family for their story if there wasn't a happy ending already up in there. You think they're gonna pick fat mama with the bad dye job and the abusive drunk of a husband who have The Uncute Kid Who will Never Get Better? The only way that would happen is if the mama lost weight, the husband went to rehab, and Jeeeesus came down and zapped the little kid into health and cuteness--It's a MIRACLE!!! If there's no "arc" of improvement, there's no story, as far as they are concerned. Also, if the kid ain't cute, he's not in the mag, either. There's a place for contrived, formulaic crapola (waiting rooms, airports, bus stations) but the blogs are better, and most of them (not all--there are a few "Look at my perfect life" ones out there) are more honest, too. <br /><br />Give me the "messy" ending, or no ending at all. After all, life doesn't have a happy ending, unless you're a total a-hole--in that case, everyone's happy when you're dead! That's not the kind of happy ending I want, I will go for plod, plod, plod and lather, rinse, repeat over "He could not pick up a cheerio, but now YOU CAN NOT TELL!!!!" Please! Like that's the goal--sweep it all under the rug! You're only successful if you CAN NOT TELL! Everyone else falls short, no matter how much improvement happens!<br /><br />But hey, if that kind of stuff brings more people to where it's kept real (like here), then it is all good, now, isn't it? <br /><br />Like I say, Be Water, My Friend.Felicianoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-89896478231817275822010-08-19T13:58:15.030-04:002010-08-19T13:58:15.030-04:00I thought about this post and had to reply again. ...I thought about this post and had to reply again. I don't just compare my daughter to other kids with similar disorders, I compare her to almost any other disabled child! My friend has a 24 weeker who is now almost 5. She walks and eats by mouth now, even though she's blind and doesn't talk. It is AWESOME that she walks and eats, but what the hell - she weighed 1 lb 4 oz at birth! How can she do things that my daughter can't do? My daughter was 5 lbs at birth. It's stupid, I know. Or how about reading about near drown kids who miraculously recover (and I'm not being sarcastic - I am BLOWN AWAY by these amazing stories) with no lingering affects? It hurts my mommy heart even though it makes me feel guilty to admit it.ANewKindOfPerfecthttps://www.blogger.com/profile/11978293330074662766noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-17731553136862114282010-08-19T12:49:13.232-04:002010-08-19T12:49:13.232-04:00My kids are neuro-typical, so I'm thinking the...My kids are neuro-typical, so I'm thinking the question doesn't exactly apply to me. But I read your blog and I read the article and I also felt awful. Not for that family, but for you and all the other moms and dads who may read the article and suddenly get to that particular paragraph and get smacked in the face with someone else's happy ending when their own future is filled with worry. <br /><br />But if you don't sometimes wish your life were different, you're probably a robot. Real people have real feelings. (((hugs)))Karenhttps://www.blogger.com/profile/10167975377269696346noreply@blogger.com