tag:blogger.com,1999:blog-401303964563152307.post4721659689566850020..comments2024-03-28T03:35:52.176-04:00Comments on Love That Max : Getting past the guilt you caused your child's special needs: group therapyEllen Seidmanhttp://www.blogger.com/profile/01433429847255621203noreply@blogger.comBlogger75125tag:blogger.com,1999:blog-401303964563152307.post-21946200515987674762020-02-24T21:54:18.350-05:002020-02-24T21:54:18.350-05:00Have you felt guilty about your child's disabi...Have you felt guilty about your child's disabilities? What's helped you get past it? Let the group therapy begin.<br /><br />Both of my adult kids (19 & 22) have recently been diagnosed with 2 genetic syndromes, hypermobile Ehler's Danlos and Postural Orthostatic Tachycardia, which they inherited through me. I didn't even know that my being flexible and great at yoga and gymnastics was a genetic connective tissue thing that could be passed on to my children at a much greater degree that it became a syndrome and affected every system of their body negatively. They have both had to drop out of college, quit working and start applying for SSDI in the last 2 years. I am just falling apart with guilt (I just HAD to have children). They are such wonderful people and were working so hard in school, and now.... They may never have the mental acuity to finish school or be able to have a career due to their chronic pain and fatigue. My daughter has had to start using mobility aids. We are still trying to find answers and get them treatment, but hope is so limited for these syndromes. I am broken, guilt-ridden, fearful, can't fall asleep at night, and don't want to get up, do anything or go anywhere in the morning. But I try...I try to accomplish something productive each day. I have to do my daughter's laundry for her, take both of them (and my daughter's friend who moved in with us who has the same syndromes) to doctor's appointments, do all the grocery shopping, all the cleaning, and manage all the bills. My husband is an over-the-road truck driver, who comes home less than 5 times a year, because he is the only income provider, because I had to stop teaching 2 years ago. I miss him and feel so alone. Life is too hard and too sad. I am reaching out to a church for free therapy for me. I need someone to talk and cry to, because I have to try to be strong for my kids. I am not past it, but I am trying to move forward, love them, forgive myself, take care of me, so I can take care of them. I have been going on bike rides; I take my son's dog to the dog park' I have started getting massages; I have been trying to call 1 friend every week, since they all love far away...Anonymoushttps://www.blogger.com/profile/00995352601894850981noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-62638392415009720992016-04-01T22:09:58.347-04:002016-04-01T22:09:58.347-04:00My son has global developmental delays and next mo...My son has global developmental delays and next month we go to the neurologist. When he was 2-3 months old, I fell asleep while feeding him in the middle of the night and he rolled out of my bed and onto the floor. I freaked out then but haven't thought much more about it until now. He is happy and otherwise healthy, but if they find anything I will never be able to forgive myself.livhttps://www.blogger.com/profile/09041874921067131332noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-28207205584422205692014-09-16T18:47:20.024-04:002014-09-16T18:47:20.024-04:00Its hard to function knowing that pushing against ...Its hard to function knowing that pushing against that dishwasher caused the dent. I was only 6 months at the time...I had 3 to go..I go through 'you only get one chance and I blew it'...what mother hurts/damages their own child...I did everything right by the pregnancy....now its too late for another child and I am stuck with my first born who will struggle in life....what a monster I feelAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-164847936173780622014-09-12T12:28:47.605-04:002014-09-12T12:28:47.605-04:00p.s. forgot to say that I very much agree with th...p.s. forgot to say that I very much agree with the doctor that you could not have caused this....even if you pushed at the corner of the old dishwasher! With all the amniotic fluid and layers of skin, fat we have (even if skinny), the babies are so protected by layers.<br />I am so sorry your son has these problems, but I truly don't believe you are to blame. And even, if you were responsible, which I don't believe you are, I would still stand by my first post to you. You are a loving mom who plainly went through a difficult time - don't let yourself believe otherwise. Just do the best you can. In order to do that, you need to forgive yourself. <br />Another Anonymous Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-81229699808863719872014-09-12T12:15:03.315-04:002014-09-12T12:15:03.315-04:00Dear Anonymous, I also had severe panic attacks du...Dear Anonymous, I also had severe panic attacks during my pregnancy. There is so much I blame myself for and my daughter had birth trauma and continuous pain for 24 years now. Please forgive yourself and know you are a good person who was misdiagnosed by the doctor and also that you are Human. We have all done things that we regret. It is so hard to live with this guilt. You were simply a woman in mental and emotional pain - if you had been able to control this, you would have. Your posts show me how sensitive you are and how much you need to love and forgive yourself. We are all human and make mistakes. At the time we react we don't understand the consequences. I live in pain each day for my mistakes too. I hope to forgive myself someday and what helps me sometimes is knowing that I would forgive a friend so easily, so why not myself? "Serenity to accept the things we cannot change..." I feel your pain but I don't want you to suffer from it anymore, but go on to be the best you can from today on and to give yourself love and hope, as you would to a friend. Love your child and run towards, not away. You are a good mother who went through a very bad time.<br />Another Anonymous MomAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-91037158030510715652014-09-08T20:00:31.503-04:002014-09-08T20:00:31.503-04:00I pushed against my stomach against an old dishwas...I pushed against my stomach against an old dishwasher without thinking....dent in head and possible Cerebral Palsy...how do i get past this???Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-83076462372600761842013-05-04T23:39:06.349-04:002013-05-04T23:39:06.349-04:00I just wanted to thank you for the post, and for a...I just wanted to thank you for the post, and for all of you Moms encouraging each other and us all. I really needed to read this today.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-67780245360526664392013-03-31T14:55:06.932-04:002013-03-31T14:55:06.932-04:00I am a little late to this discussion but just fou...I am a little late to this discussion but just found it! I am overcome with guilt to the point that I can barely even function. My son's brain did not form properly. I went through a rough time in the middle of my second tri when my thryoid went crazy and I started having panic attacks. The doctor misdiagnosed it as depression and slapped me on a heavy dose of antidepressants which made the symptoms worse. I started thinking that maybe I couldn't handle another baby, even though he was planned. Sometimes I would push on my belly out of frustration, just wanting the feelings to go away. Finally, I found out my thryoid levels were double were they should have been and that was causing all of the anxiety. Thyroid medicine got me back to myself and back to complete excitement over the baby. Then when he was 9 months we got the diagnosis. Several doctors have told me his condition formed before any of that, probably early in the first trimester wen the brain is first forming. they have told me there is no way pushing on my belly could have caused this either. But I don't know if I will ever believe them. I cry most of the day, every single day, because of the guilt I carry over those aweful 3 weeks. I don't know if I will ever feel that it is OK to smile again, or be happy, or enjoy life because I believe I ruined his chance for a beautiful, normal life. And all of those feelings were so outside of who I thought I was as a human being. Now I just think I am some sort of monster. I hope this is just a stage in the greiving process and that one day these feelings won't seem rational, but they sure feel like truth now.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-90747517933095623172013-03-25T10:05:31.111-04:002013-03-25T10:05:31.111-04:00I know my daughter's syndrome was just a flaw ...I know my daughter's syndrome was just a flaw of nature but I have often felt it was my fault. I have grown to accept that it's just one more thing in life I never had control over. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-4418802113157618242013-03-15T13:50:23.310-04:002013-03-15T13:50:23.310-04:00amazing how two different people examining the sam...amazing how two different people examining the same thing can see two totally different things. When i read this, i automatically think how lucky your children are! Reading about your younger child, I automatically think how lucky she is to have you as parents and to have been in your care when she got sick, otherwise who knows if she'd even be here today! Delays are things that we can deal with! I am just so happy your children have you! Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-21268791438239069362013-03-15T13:31:30.521-04:002013-03-15T13:31:30.521-04:00WOW!! Dr.s can be so insensitive! When my sister w...WOW!! Dr.s can be so insensitive! When my sister was born, back in the early 80's, the dr. didn't even suggest Ds until my mom questioned it. She had worked with children with special needs and was aware of many disorders. After the genetic testing came back, the dr. told my parents that my sister was a mongoloid... to which my mother replied... no, she is a little girl and she is our daughter! It amazes me that even after 30+ years of development, people, including drs can be so ignorant and hurtful! as the sister of a person with special needs, i thank God everyday that i have the sisters i have! Anna has taught me soooo much about life that i don't know i would have been able to learn from any "typical" person! Anna is the reason I love so freely, she is the reason i decided to become an SLP, and is also the reason I want to adopt a child with special needs! I believe that God had a plan for our family, and I am so glad that He knew what was best for us! God often chooses things for us that we would not choose for ourselves and blesses us beyond what we could imagine! Siblings of children with special needs may have it the best in the world! Although it can be hard, we learn to love unconditionally, accept people for who they are, and we can be some of the biggest advocates for our siblings and others with special needs! It hurts my heart to know that so many parents still blame themselves for the difficulties that their AMAZING children were born with! I guarantee you, Anna does not blame my parents for the challenges she has endured, just like i don't blame them for the challenges i have endured. Everyone is born to endure challenges, some peoples are just a little tougher than others!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-25502324414764103212013-03-13T18:34:23.006-04:002013-03-13T18:34:23.006-04:00Autism is a stealth ninja. You can never tell it i...Autism is a stealth ninja. You can never tell it is there until age 18 months or something like that. I like being autistic.Anonymoushttps://www.blogger.com/profile/16576844684725684941noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-42757249063410326992013-03-13T14:31:51.458-04:002013-03-13T14:31:51.458-04:00Again, as always great blog!
I think as parents we...Again, as always great blog!<br />I think as parents we always blame ourselves when everything is not perfect with our children. We are their parents, we are to protect and provide for them and for me it is very difficult to get past the feeling that I failed our Ellie. <br />I had severe pre-eclampsia and was induced at 34 weeks for my own health. 3-4 Dr appts a week and we trusted our multitude of Dr's that she was "OK" to be born. I often wonder maybe it was that day I forgot to take my meds,, maybe if I would have been more strict with bedrest I could have lasted longer! I work in healthcare and I should have been able to prevent this from happening! It was very hard to not blame myself when the specialty pediatrician told me her CP was caused in utero. My body did something wrong during her development.<br />One day I found peace that no matter what I did this is how it was just meant to be when someone actually said to me "who better of a person for this to happen to!", I of course initially wanted to rip her head off, how dare you say such a thing. After a few days of stewing I realized maybe she was right, just not tactful! Our family and friends have accepted Ellie, we can financially support her needs and working from home she has opportunities to go to group activities and I can attend all of her therapy sessions; something not every parent or family can do or provide. It is disheartening to think not all children like our Ellie have the opportunity to be all they can due to lack or resources or just love for who they are! <br />I still struggle with blaming myself, but I do believe everything happens for a reason and I believe Ellie (special needs and all) was meant for our family!JWhttps://www.blogger.com/profile/14822446428118184504noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-59514171445618557002013-03-13T11:36:33.682-04:002013-03-13T11:36:33.682-04:00i 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-401303964563152307.post-61731076015527296452013-03-13T05:09:09.984-04:002013-03-13T05:09:09.984-04:00Thanks Ellen for opening up this discussion. It is...Thanks Ellen for opening up this discussion. It is such a hard topic for me right now and very raw. I have issues with this in many ways even though I have recently discovered more to the story. I can relate to taking the mother guilt into therapy energy! Hope both your kids are well xxSmithsholidayroadhttps://www.blogger.com/profile/03614441021886602077noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-63549784825420753702013-03-13T00:25:27.442-04:002013-03-13T00:25:27.442-04:00I had a c section with my first daughter and the m...I had a c section with my first daughter and the midwife with our second was the same person. She wanted me to try vaginal after c-section. We talked in length about how I would only try pushing a short time, no labor inducing drugs, no oxygen etc. She was not there for the delivery. We had a different midwife. I pushed for a very long time, the epidural was in the wrong place--I couldn't even lift up my own head to push.(my husband lifted my body for me), the nurse kept calling the anesthesiologist and telling him it is not right and he kept telling me that I was "anxious". The midwife kept telling me I was doing "great"--she tried oils and stretching and all that other BS....long story short--the RN NOT the midwife called a code. My daughter's shoulders got stuck. She was born not breathing. She was delivered by 3 RN's--one of which pushed the midwife out of the way--the OB Doctor was the LAST person to walk slowly into our room after the code was called--it took the Peds doc a little over 4 minutes to get Ally breathing. Her 1 minute apgar was 1. She is developmentally delayed. No doubt almost daily I still think if only I would have had a c section.... maybe things would be different. I live with it now...you just don't know....what would have been. I can't go back and change things. We are lucky in the sense that she is a beautiful, smiley, dimpled, happy little girl who can run and play and dance and work hard to succeed at whatever she is working on. But.....I sometime still wonder---especially this time of year--IEP time--goal time---3 year evaluation time---well check time... **scream***Cheryl Niehausnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-86604945853647784672013-03-13T00:18:33.951-04:002013-03-13T00:18:33.951-04:00Oh and I just saw your post about seeing a therapi...Oh and I just saw your post about seeing a therapist and I do see a counselor. I have been for awhile now, and it is amazing thing!Kathryn (SingingThrough the Rain)http://www.singingthroughtherain.netnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-34630238951283665272013-03-13T00:16:55.983-04:002013-03-13T00:16:55.983-04:00Thank you so much for this post. My son was just d...Thank you so much for this post. My son was just diagnosed with Autism and SPD only 7 months ago and it has been a struggle to come to terms with it and realize it is not my fault. He also has a speech disorder and a feeding disorder. I still feel guilty at times and think this has somehow got to be my fault. It has to be something i did wrong during pregnancy or that I ate wrong or I didn't follow all the "rules" of pregnancy. I just struggle with wondering why my precious baby has to struggle like this. <br /><br />I have also held guilt for a long time about a miscarriage I had before my son. I wonder if I did something wrong or if I had done something different could it have prevented it. I still wonder at times. I think these will be struggles I will always have, but I know deep down these things are not my fault.<br /><br />My 2 1/2year old son has therapy 9 times a week and it has taken years of fighting for him and getting him the therapy he needed and still needs. I know doing the best for him is the best I can do.Kathryn (SingingThrough the Rain)http://www.singingthroughtherain.netnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-2585994821125600172013-03-12T23:59:20.128-04:002013-03-12T23:59:20.128-04:00This hasn't come up in discussion but I hope t...This hasn't come up in discussion but I hope that anyone who has consuming guilt that isn't going away sees a therapist. I know that it's hard to find time when you're juggling all your child's therapies, but it's so important to take care of your needs, too. If you're a wreck of a person, you can't be there for your child. I saw a therapist for a few months when Max was a baby to deal with grief, and it really helped. Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-16273803970891184812013-03-12T23:48:51.542-04:002013-03-12T23:48:51.542-04:00"There is no point in dwelling on things I ca..."There is no point in dwelling on things I can't change, I try to focus my energies on the things I can change" -- YES. This. Everyone here should say this out loud to themselves. And then do it again. And again. Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-79700635750292239902013-03-12T23:43:01.900-04:002013-03-12T23:43:01.900-04:00Truly horrified to hear people would make comments...Truly horrified to hear people would make comments to you about folic acid. The medical knowledge and advances we have now can be a double-edged sword when things don't go as planned, because they give the impression that we/medicine have the consummate power to prevent.... Nature has its own mind. When I've told myself that, it's helped. Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-42195633235008296202013-03-12T23:28:34.357-04:002013-03-12T23:28:34.357-04:00I was just having a separate discussion with anoth...I was just having a separate discussion with another mom about how our kids' disabilities are often harder on us than they are on them. I hope that knowing you do everything you possibly can for your son gives you comfort. Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-11764657819684515152013-03-12T23:23:03.323-04:002013-03-12T23:23:03.323-04:00Amen. Amen. Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-44387768813204973672013-03-12T23:22:03.217-04:002013-03-12T23:22:03.217-04:00I felt so much more guilt when Max was little. I h...I felt so much more guilt when Max was little. I hope you grow out of it too, Deb. Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-14536599892034919662013-03-12T23:20:44.023-04:002013-03-12T23:20:44.023-04:00Amy, since I know you IRL I can say with full cert...Amy, since I know you IRL I can say with full certainty that you are a GREAT mom and we can only do as much as we can do for our kids without self-destructing. Also, Jessie has come a long way since she was a tot and you deserve credit for that, so take it!Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.com