tag:blogger.com,1999:blog-401303964563152307.post8095290113277984155..comments2024-03-28T03:35:52.176-04:00Comments on Love That Max : How I made peace with having a kid who has special needsEllen Seidmanhttp://www.blogger.com/profile/01433429847255621203noreply@blogger.comBlogger39125tag:blogger.com,1999:blog-401303964563152307.post-83715908421977455922017-01-19T05:24:45.855-05:002017-01-19T05:24:45.855-05:00I agree. I signed up for BabyCenter updates when S...I agree. I signed up for BabyCenter updates when Susan was born only to stop reading them after Daniel was born. When I found out I was pregnant with Daniel on pee stick day I was so excited. It was a bittersweet day. Leahnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-36814397555056043792014-02-24T08:06:57.351-05:002014-02-24T08:06:57.351-05:00FYI Disabled, handicapped, special needs kids and ...FYI Disabled, handicapped, special needs kids and autistic ARE antisocial words. Normal decent people do NOT use words like that. Who talks like that?! Shame on you- you should know better! And to both of you, get with the times please. Tharanoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-16625882936219242142013-01-20T12:57:09.463-05:002013-01-20T12:57:09.463-05:00GREAT example of 1st person "making peace - m...GREAT example of 1st person "making peace - moving toward Positive Acceptance" work - just backlinked it to "The Stages of Grief Following Diagnosis" on my attentionally focused WordPress blog.<br /><br />Madelyn Griffith-Haynie, CMC, SCAC, MCC<br />- ADD Coaching Field co-founder -<br />(ADDandSoMuchMore and ADDerWorld - dot com!)<br />"It takes a village to transform a world!"Madelyn Griffith-Haynie, MCC, SCAChttp://www.addandsomuchmore.comnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-50963827763244648402011-03-08T23:16:56.574-05:002011-03-08T23:16:56.574-05:00Hi,
My name is Heidi... I just randomly came acros...Hi,<br />My name is Heidi... I just randomly came across your blog when I searched for songs for kids with special needs... the songs of love is perfect and I'm going to suggest it to my mom!<br /><br />My younger brother is severely disabled and I've always wondered how my mom managed to deal with it all. Reading your blog brought me to tears, because I think I just got a glimpse of the journey my mom has been through all these years, but never expressed in words to us siblings.<br /><br />Though you don't me, I will look forward to reading your blog from now on... It helps to see there are other families out there like mine!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-38635239749688106182010-10-27T11:32:19.753-04:002010-10-27T11:32:19.753-04:00This is just a beautiful, beautiful post. I wish I...This is just a beautiful, beautiful post. I wish I'd had it to read six years ago when my Leo was born. But at least I have it to read now. And I couldn't agree more with every word!Mayahttps://www.blogger.com/profile/13640322135525371672noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-37995631708569756402010-10-10T17:44:21.759-04:002010-10-10T17:44:21.759-04:00A beautiful post...and encouragement for you today...A beautiful post...and encouragement for you today.growingupartistshttps://www.blogger.com/profile/12399714569663568902noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-27450052979137458442010-06-11T21:57:27.505-04:002010-06-11T21:57:27.505-04:00Hi Ellen,
Loved reading your blog about Max. My w...Hi Ellen,<br /><br />Loved reading your blog about Max. My wife pointed it out to me because Max and our son Victor look so much alike. We also feel very much the same as you do about him and has taken as as long to find out. Here is his <a href="victorpauca.blogspot.com" rel="nofollow">blog</a>. I'd love to add one more item to your list: I've learned to count up and celebrate the things Victor can do instead of counting down and mourning the things he cannot do.Paulhttps://www.blogger.com/profile/02340425090960252698noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-55672311996564601332010-05-07T01:33:37.286-04:002010-05-07T01:33:37.286-04:00Marie Clare, that is a really good question. For m...Marie Clare, that is a really good question. For me, it wasn't so much that having a second child healed me. It was that she helped me to not obsess and worry so much about Max, because I had less time to do so. My little girl balanced my brain out. Also, it was thrilling to experience a typical birth and newborn phase. I think it somehow gave me newfound confidence as a mother. But what ultimately healed my heart was Max. I eventually stopped looking to the past and grieving about what had happened. I stopped trying to look into the future and see what he'd "be" like. I learned to be grateful for his slow yet steady progress, and to appreciate the child he is, not the child he could have been.Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-52247825049689185532010-05-06T20:02:48.331-04:002010-05-06T20:02:48.331-04:00Hi Ellen, just wanted to ask was it healing to hav...Hi Ellen, just wanted to ask was it healing to have another child? Im feeling that my heart will never be truly healed because I didnt get to experience "typical" even in tiny things like crying typically.marie clarehttps://www.blogger.com/profile/15102120046107159127noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-54515372143391786912010-05-05T20:41:49.082-04:002010-05-05T20:41:49.082-04:00Thank you thank you thank you. As a mom early on ...Thank you thank you thank you. As a mom early on in this "developmental delay" process (and having a particularly pity-party like day after a rough PT session), this is exactly what I needed to hear today. I remembered happening across your blog months ago, and just found it again hoping for some inspiration, and just a few posts down, found this. Thank you. I NEED to believe that this dark place will be lighter someday, no matter what the future holds for my sweet girl.Momttorneyhttps://www.blogger.com/profile/09783917281663075229noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-75295710188297112412010-04-30T15:56:02.098-04:002010-04-30T15:56:02.098-04:00My former less than two pound preemie who will be ...My former less than two pound preemie who will be 27! in 23 days taught me that our children are just children. They are perfect, just like other children. They don't need to be fixed, just loved and supported and guided like all other children - and keep fighting until you get whatever help it is they and you need.Carolhttp://candrworld.com/Life-with-Nin/noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-60231982374318509772010-04-29T15:28:16.223-04:002010-04-29T15:28:16.223-04:00Wow, what an amazing mother you are to your two ch...Wow, what an amazing mother you are to your two children. I cry almost everytime I read your blogs and am thankful that my children are for the most part healthy and can't imagine what you and so many of your readers go through on a daily basis. I think you ALL are such strong people and don't know what I'd do in your shoes. I almost think of you now sometimes when I get frustrated at home with my children and how your life must be even 1000x more difficult at times. Your an ispiration and I love reading your blogs, even if they make me cry alot :o)Travelers Baristahttps://www.blogger.com/profile/15291790960204517580noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-27303920889222102712010-04-29T01:13:17.511-04:002010-04-29T01:13:17.511-04:00I think you are amazing. My family has... health i...I think you are amazing. My family has... health issues. while I was pregnant with my daughter I was so afraid she would be born with something wrong with her, and worse that I would hate her for it. I was so afraid of that possibility that I almost put her up for adoption. I dont know really what to say other than I am in total awe of you. I really hope someday I am as awesome and well adjusted as you.hannah yarbournoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-18744422750198284332010-04-29T00:37:38.476-04:002010-04-29T00:37:38.476-04:00Hi. I came over from Ken's blog and I am so g...Hi. I came over from Ken's blog and I am so glad he shared. I am currently trying really hard to make peace. I am trying to live in the moment and stop thinking so much about the future. It is hard, though. It is a whole mind shift and your post today has been really helpful. Thanks.Sophie's Story by Elainehttps://www.blogger.com/profile/00415731740298071423noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-14192451749475265752010-04-29T00:06:54.002-04:002010-04-29T00:06:54.002-04:00As a yound adult with Cerebral Palsy, and knowing ...As a yound adult with Cerebral Palsy, and knowing how long it took me to get to this point with myself (actually, I'm still not convinced I'm fully there), thanks for sharing you're perspective of how you've gotten there. It's something I've always wanted to ask my parents, but never have.Mollyhttps://www.blogger.com/profile/11299570483127342830noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-57953538224948618762010-04-28T23:44:10.224-04:002010-04-28T23:44:10.224-04:00What an amazing post. I think that every parent of...What an amazing post. I think that every parent of a child with needs should read it. It should be mandatory reading material before you leave a NICU, or when you get an unwelcome diagnosis. You are so inspiring. I feel the same way about my daughter, but could never voice it as eloquently as you did.sugar magnoliahttp://sugarmagnolia70.blogspot.comnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-73803039069801809312010-04-28T23:37:27.457-04:002010-04-28T23:37:27.457-04:00Hi, I have a three year old severely disabled chil...Hi, I have a three year old severely disabled child (does not eat by mouth, walk, sit up, speak, etc.). I also have a 4 1/2 year old and a 1 1/2 year old. <br /><br />Regarding your autistic son having a difficult time with kids, perhaps the preschool environment isn't the right thing, right now. Liam had the opportunity to attend preschool, but he wouldn't have gotten much out of it. Thus we are having home based services.<br /><br />Your son might do much better in a really small play group with perhaps another child with some challenges and some "normal" siblings. I found a friend with a disabled child through my birth to three therapists. Ask everyone you know who is involved with special needs kids if there are any parents who have similar children or if they know any parents you might hit it off with...Super Frugalettehttps://www.blogger.com/profile/05654085342427218507noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-77035058913856944932010-04-28T23:36:42.316-04:002010-04-28T23:36:42.316-04:00There is a wonderful website called The Common'...There is a wonderful website called The Common's Cafe: http://thecommonscafe.com/Home.html <br />and an amazing little book that spawned the site. The book is called "The Badge ~ God's words to a wounded child" and is written by my dear friend Nan Mac who is the mother of a 24 yr. old handicapped child. Their story is amazing and truly inspiring. I count Nan and her son Dan as "Heroes of the Heart". I hope this helps in some small way...Anonymoushttps://www.blogger.com/profile/10365407228381991920noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-72383048158476675692010-04-28T23:14:48.700-04:002010-04-28T23:14:48.700-04:00I agree, my daughter at that age was overwhelmed t...I agree, my daughter at that age was overwhelmed too especially by crowds on playgrounds. Try asking the staff to set up one-one first then slowly increase the group size. Why not try a short script? Like "hi my name is __ what's yours?" Mine is ___. Let's do a puzzle." etc. Hope this helps! Aydatweetautism on twitterhttp://www.csaac.orgnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-71165174886597069192010-04-28T23:09:17.602-04:002010-04-28T23:09:17.602-04:00I didn't get into how cathartic this blog has ...I didn't get into how cathartic this blog has been for me, but it has been amazingly so. Partly because I can vent/share my feelings, and partly because I know I'm sometimes reassuring to moms who are in the thick of it. Rebecca, Jamie, Kara Melissa, Sari, and everyone else, and I'm glad it helped you. And Jamie, Owen is just adorable. And you are welcome to share this, Suealeen.<br /><br />Jen, I've also struggled with how to handle similar situations. First, here are two relevant posts I did you might want to check out:<br /><br />http://lovethatmax.blogspot.com/2010/02/developmentally-delayed-parents-and.html<br /><br />http://lovethatmax.blogspot.com/2010/01/mama-bird-ha-i-am-mama-pterodactyl.html<br /><br />I wonder a few things: Have you had a conference with the teachers/principal/speech therapist at school about this? It seems like they could be facilitating things for your little boy, and they could also offer suggestions that could be applied to summer activities. I mean, they could make it so that they set him up with one or two other kids on the playground so that he's not overwhelmed—maybe he has a cool toy or something that would draw kids in. (A little different but, when Max was 2 and he had a walker with wheels, he was the hit of our neighborhood.) The teacher could also have a classroom discussion where kids talk about what scares them, and it would be a chance to for the teacher or son to say loud noises scare him.<br /><br />Max also has sensory issues about new situations/noise. When he was really young, we just had to not do the big noisy group activities and arrange for one on one playdates. Or we just hung out with him a lot, with my mom and my then-single sister. Sometimes, I had to contain my own eagerness to get Max to do typical-kid things because it wasn't best for him. Do you know what I mean? It's great that he has family to hang with. Maybe that's enough for him at this age. <br /><br />Anyone have other ideas for Jen?Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-36477680474309804222010-04-28T21:49:09.848-04:002010-04-28T21:49:09.848-04:00Thank you for this... I just sent it around to all...Thank you for this... I just sent it around to all of the family and friends who have helped us since Owen was born just eleven weeks and five days ago... Again, thank you.Jamie Krughttps://www.blogger.com/profile/06695081270550029233noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-47244706713000936552010-04-28T21:35:31.040-04:002010-04-28T21:35:31.040-04:00What a wonderful post....my son is 3, and I'm ...What a wonderful post....my son is 3, and I'm taking step after step to get to where you are. You invited questions and I hope you won't mind this one...how do you go about or make adjustments for other kids reactions towards Max? (or for anyone that wants to answer your kiddo). My son just started some limited pre-school classes, one is special education based with multiple therapist one is not...(for the record, he's Autistic, and has Apraxia but the one that effects him the most is the sensory sensitivity disorder). He really wants to make friends and be friends, but he's so easily over whelmed with sensory issues and so behind verbally that it's really created a wall around him. If he does attempt to respond verbally, he's very quiet and slow and I've seen numerous kids, get impatient standing there waiting for him to respond and just leave. As he stands there lip quivering. And then on the other side of the spectrum, if kids start playing tag and screaming (happy screams, mind you), he will get completely overwhelmed and run to the corner, squat down and cover his hears and start stemming. Outside of blinking back my own tears, it's not the other kids fault, at this age, they are too young to understand, none of my son's delays and challenges are obvious to the naked eye (okay maybe some of you parents might pick up on them, but most won't). I can't shelter him and I don't want to be one of those bossy mom's either...there must be a fine balance, but I have yet to find it. And to be honest with summer social activies coming up, I am honestly dreading them...I am ashamed to admit that, but so far, outings or group/social things, family excluded have been such a struggle. Sorry this is so long.<br /><br />JenAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-64418023396517381402010-04-28T21:30:00.693-04:002010-04-28T21:30:00.693-04:00I love this. You mind if I share?I love this. You mind if I share?Sue.Aleenhttps://www.blogger.com/profile/14237818992306316920noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-32854989188722439342010-04-28T17:32:53.484-04:002010-04-28T17:32:53.484-04:00Touching and beautiful post and I am so thankful f...Touching and beautiful post and I am so thankful for your honesty, Ellen. Truly. I hope you do not mind that I linked to you through mine because I think this is such a great post of hope - and thoughts that we all have, whether we admit it or not. And it is ok!<br /><br />Thank you again.Sarihttps://www.blogger.com/profile/16604795442859757843noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-29185384597320705362010-04-28T16:02:45.362-04:002010-04-28T16:02:45.362-04:00What a nice post. I wrote one the other day about ...What a nice post. I wrote one the other day about how I hate Cerebral palsy. I think at times I go through mouring and then right back to the grind. I watch a lot of friends with Autistic kids who are sure they will find the cure and drop MILLIONS of dollars to cure them... <br /><br />Cure.. what a word. Instead of Cure how about we ACCEPT and do our bestnancyhttps://www.blogger.com/profile/16943446751465263123noreply@blogger.com