tag:blogger.com,1999:blog-447392662850613354.post4031512702756000395..comments2024-02-25T10:24:30.868-05:00Comments on Special needs disability parenting BLOOM: Why blame Mom?BLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.comBlogger25125tag:blogger.com,1999:blog-447392662850613354.post-25357547665955548882015-03-17T12:57:58.103-04:002015-03-17T12:57:58.103-04:00So well said, well enough said that I'm sharin...So well said, well enough said that I'm sharing this link on my blog. You would be amazed at how much crap I have gotten for having two children with "special needs". My daughter we didn't know about till after testing was done and my son we knew would be 50/50.... Yes I took a risk but I don't determine genetics nor do I choose it. I did everything right and yet so many say otherwise.... Thank you for this post! <br /><br />~ Special Momma ~ <br /><br />http://blessedspecialchildren.blogspot.com/<br />http://www.caringbridge.org/visit/littlechristinaSpecial Mommahttps://www.blogger.com/profile/08016804676963876790noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-42550730705453868562014-04-24T16:21:14.463-04:002014-04-24T16:21:14.463-04:00There are certain relatively mainstream religions ...There are certain relatively mainstream religions where people believe that if you give birth to a child with disabilities, that you are being punished for some past transgression. I am not speaking of ancient beliefs here. Not sure how our society will ever stop blaming the mother or we mothers blaming ourselves, when there are children today being raised under beliefs like those.<br /> JoanPnoreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-43001989534126043872013-03-14T14:44:23.501-04:002013-03-14T14:44:23.501-04:00Thank you for this post.
I am a mother of a child ...Thank you for this post.<br />I am a mother of a child with multiple and complex birth defects that required life-saving surgery in infancy, will have another small operation at the end of the month, quite possibly more throughout his life. He is 18 months old. I did everything right. I had a wonderful OB and good prenatal care, took Foltx (a prescription with a high dosage of folic acid) months before I was even pregnant, we did extra testing at specialty clinics, I watched my diet and exercised, and had him before I turned 35. I would never have terminated, no matter what had been found in prenatal testing. My purpose for that was to determine what care he would need immediately after birth or even prior to that to improve his quality of life and chances of survival. His defects were missed completely.<br />I have a genetic flaw that makes me more prone to having children with genetic flaws. So his problems are because somewhere back in my family history some mutation happened that made this possible. Nothing I did or didn’t do could have made him magically fine.<br />Maryhttps://www.blogger.com/profile/12754431598680811346noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-60917689081131617092013-03-12T20:35:05.230-04:002013-03-12T20:35:05.230-04:00i come from a different perspective, but have some...i come from a different perspective, but have some of the same guilt. both of my daughter's were adopted. both of them have genetic disorders.<br />my big's was a complete surprise. at nine months we were at a geneticist and we got blindsided with the diagnoses of neurofibromatosis. i read (and read and read and read), and felt guilty that i didn't see things earlier, and if i had could i have prevented.....what? it happened at conception, not after birth. yet i still struggled.<br />with our little, we intentionally set out to adopt a little with Ds. she got really sick with a virus (that her big sister had, had, and had gotten at a story time she went to with a friend). as a result of the virus and an unrepaired heart defect, she ended up almost dying, intubated for nine weeks, and in the hospital for 96 days. we were in the hospital a year ago right now, and i feel like the worst parent alive because it caused her to be further delayed, and she lost the ability to eat by mouth.<br />yeap. guilt is so hard. even those of us who had no part in the creation of our children still find ways to blame ourselves. :/the family of mannchester estatehttps://www.blogger.com/profile/01989615450493104842noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-89345916771998966412013-03-04T11:53:21.598-05:002013-03-04T11:53:21.598-05:00Hi Meg -- so glad to see you here. I clicked to yo...Hi Meg -- so glad to see you here. I clicked to your blog and Gavin looks wonderful! Are you submitting to filmpossible this year?<br /><br />I'm really sad to hear about how some people you know can't accept that there are random, unpredictable things that are very much a part of life. I guess it takes some people a lifetime to learn that truth.BLOOM - Parenting Kids With Disabilitieshttps://www.blogger.com/profile/06901482901008135659noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-56285826254238526372013-03-04T11:48:35.140-05:002013-03-04T11:48:35.140-05:00Hi Mary -- thanks for visiting. You have an adorab...Hi Mary -- thanks for visiting. You have an adorable daughter!!! Yes, if I was in your spot I would find that "Healthy babies are worth the wait" tagline a smack in the face!BLOOM - Parenting Kids With Disabilitieshttps://www.blogger.com/profile/06901482901008135659noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-85250585208444888422013-03-04T11:47:12.757-05:002013-03-04T11:47:12.757-05:00thanks Ellen: it would be great to see a competiti...thanks Ellen: it would be great to see a competition for a public health campaign that effectively reaches the target population without implying that all problems are preventableBLOOM - Parenting Kids With Disabilitieshttps://www.blogger.com/profile/06901482901008135659noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-49074586988671130942013-03-04T11:45:10.578-05:002013-03-04T11:45:10.578-05:00thanks for visiting and sharing your experience Te...thanks for visiting and sharing your experience Terri!BLOOM - Parenting Kids With Disabilitieshttps://www.blogger.com/profile/06901482901008135659noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-64801977890038765982013-03-04T11:44:21.372-05:002013-03-04T11:44:21.372-05:00Hi Lorette -- thanks for stopping by! I think publ...Hi Lorette -- thanks for stopping by! I think public health campaigns can be more sophisticated in the language they use. For example, instead of "Healthy babies are worth the wait" which is offensive when the vast majority of pre-term births can't be prevented, how about:<br /><br />Scheduling an early C-section can harm your baby<br /><br />thanks for writing!BLOOM - Parenting Kids With Disabilitieshttps://www.blogger.com/profile/06901482901008135659noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-5319161706206153602013-03-04T11:37:25.927-05:002013-03-04T11:37:25.927-05:00Welcome BethBG -- I hope we hear more about your s...Welcome BethBG -- I hope we hear more about your son! Yes, education of medical students and doctors on this topic is critical. Thanks for writing!BLOOM - Parenting Kids With Disabilitieshttps://www.blogger.com/profile/06901482901008135659noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-78451187897836065612013-03-04T11:35:56.508-05:002013-03-04T11:35:56.508-05:00Hi Anonymous -- thank you for writing.
What respo...Hi Anonymous -- thank you for writing.<br /><br />What response do you get when you refuse to provide a pregnancy history? I have been told that my son won't be eligible for services without it. Good for you for stopping the insanity!<br />BLOOM - Parenting Kids With Disabilitieshttps://www.blogger.com/profile/06901482901008135659noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-66764453987274386382013-03-04T11:34:13.047-05:002013-03-04T11:34:13.047-05:00Hi Donna -- you're so right that it's not ...Hi Donna -- you're so right that it's not just our newborn baby's health that we are made to believe we're in control of. There's a whole industry set up to convince us we're not mortal and we can turn back the clock if we only "do" the right things. Thanks for writing!BLOOM - Parenting Kids With Disabilitieshttps://www.blogger.com/profile/06901482901008135659noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-905255821280567812013-03-04T11:31:01.987-05:002013-03-04T11:31:01.987-05:00Hi GB -- you're right about FAS. But I think I...Hi GB -- you're right about FAS. But I think I would still argue that no mom intentionally harms her child -- in this instance an addiction compromises a mom's ability to do what is best. What do you think?<br />BLOOM - Parenting Kids With Disabilitieshttps://www.blogger.com/profile/06901482901008135659noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-57047514054441130822013-03-03T21:16:51.261-05:002013-03-03T21:16:51.261-05:00Thank you! I'm glad someone is saying this.Thank you! I'm glad someone is saying this. juliehttp://howisustain.comnoreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-62935732562199827522013-03-03T08:54:47.114-05:002013-03-03T08:54:47.114-05:00I love this post. Thank you!
I was recently asked ...I love this post. Thank you!<br />I was recently asked by several people WHY my son's arm didn't develop in utero. But why?? They wanted to know. I had to defend myself that it was nothing I did and it is just a random thing that happened. An unexplained statistic. As they looked at me with questioning eyes...Anonymoushttps://www.blogger.com/profile/07211480269080229620noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-31753766755325309642013-03-02T17:07:37.763-05:002013-03-02T17:07:37.763-05:00I had a really similar response to one of the NYti...I had a really similar response to one of the NYtimes Well blog posts a while back about preemies and near-term preemies. The blog post was about the health problems associated with near-term births, and the importance of avoiding non-medically indicated early births. However, the author immediately segued into a discussion of the health problems of very early/very small preemies. As a mom who gave birth to a very early IUGR baby because I was in danger of dying of severe preeclampsia, it felt very insensitive to be told that "healthy babies are worth the wait," no f-ing kidding.<br /><br />Anyway, I clicked over hear from Motherlode and I'm really enjoying your blog.Maryhttps://www.blogger.com/profile/09251539482775464009noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-49849449942402282492013-02-28T21:35:59.117-05:002013-02-28T21:35:59.117-05:00Louise, brilliantly said, as always. I do agree t...Louise, brilliantly said, as always. I do agree that the message is over the top, but I also think that, as Lorette said, these campaigns are largely aimed at a certain population, often underprivileged (and perhaps super-young) moms who need a handle on prenatal care because they are most at risk for not getting enough or even ANY.Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-88284790174599576692013-02-28T11:24:42.490-05:002013-02-28T11:24:42.490-05:00I was fortunate enough to have a Healthy Preemie a...I was fortunate enough to have a Healthy Preemie at 32 weeks and I did everything I was told. My baby was measuring small for dates so we went for an Ultrasound which showed low level of placenta as well as baby was pinching the Umbilical cord and slowing its heart rate... We were told, you can wait but it will lessen the chance of survival. I really dislike when people blame the parents for everything.<br /><br />Thank you for the great article :)Terrinoreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-78903439493782635042013-02-28T09:11:46.350-05:002013-02-28T09:11:46.350-05:00While I appreciate your opinions on these campaign...While I appreciate your opinions on these campaigns...I do see a correlation between the health of the mother and the health of the newborn....disabilities are in my opinion a separate health issue ... which many times cannot be controlled for by a mom taking care of herself during pregnancy. However I think that many of these campaigns are aimed at those moms who are not taking care for various reasons...some out of ignorance...some have severe problems of their own.<br />There has to be a balance and definitely moms should not blame themselves for being the cause of their child's disability ...but that should not preclude campaigns that are meant to help prevent the preventable....and yes disability is not necessarily synonymous with poor health. We need campaigns to reach those most vulnerable and I would say that moms and parents reading your blog are not among them for the most part.Lorettehttps://www.blogger.com/profile/04019631557908953082noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-31954490630656545162013-02-27T21:07:06.283-05:002013-02-27T21:07:06.283-05:00Thank you Louise for the true words. My son has D...Thank you Louise for the true words. My son has Down syndrome. It doesn't matter what I did or didn't do during pregnancy, his disability was determined at conception, possibly even before that. Dealing with clueless medical professionals was not helpful as we struggled with the shock and grief of an unexpected diagnosis. They really need to teach this in medical school. Btw, I adore this blog, I always learn something or see from a new perspective, so thank you for that also!BethBGhttps://www.blogger.com/profile/12353601159806913449noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-35129240815428549742013-02-27T12:39:49.875-05:002013-02-27T12:39:49.875-05:00Most mums who do 'all the right things' or...Most mums who do 'all the right things' or even most of the right things have healthy babies.<br />That's a bitter pill for those of us who don't to swallow.<br />It does make me particularly bitter that medical professionals, who should know better, perpetuate this.<br />Based on you and Cheryl writing about your experiences constantly being asked about your pregnancies, I now refuse to engage in this with HCPs.<br />They should know better. We have more than enough to deal with.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-55623792386879353502013-02-27T09:49:41.463-05:002013-02-27T09:49:41.463-05:00Thank you for this important post, Louise. We bla...Thank you for this important post, Louise. We blame ourselves enough without others chiming in. I think it's natural to go over every detail of a pregnancy and birth when a child is born with disabilities. Should I have done that step aerobics class at 24 weeks? Should I have had my hair coloured even though it was 'vegetable based'? I had to give myself a long, hard shake to stop thinking those thoughts. I find it hurtful and offensive that some would perpetuate these myths that we are in control of health, longevity and nature itself. The Caregivers' Living Roomhttps://www.blogger.com/profile/10920119448415733545noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-70044866307973451212013-02-27T05:43:54.225-05:002013-02-27T05:43:54.225-05:00Very well said! This is a very informative article...Very well said! This is a very informative article and in my opinion, a lot of moms out there will be able to benefit from the knowledge that you shared to us in this post. I agree on every word that you said here. Thank you for sharing. :)Anonymoushttps://www.blogger.com/profile/09360260510046488561noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-6186071828326394172013-02-26T19:29:04.893-05:002013-02-26T19:29:04.893-05:00Important points, all of them.Important points, all of them.Ahttps://www.blogger.com/profile/06318174928862120631noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-13656041300354189832013-02-26T19:21:04.137-05:002013-02-26T19:21:04.137-05:00Fetal Alcohol syndrome is a notable exception. It ...Fetal Alcohol syndrome is a notable exception. It is the leading cause of mental retardation and is 100% preventable.GB's Momhttps://www.blogger.com/profile/08866513131959998883noreply@blogger.com