tag:blogger.com,1999:blog-401303964563152307.post8499105940107928197..comments2024-03-28T03:35:52.176-04:00Comments on Love That Max : The shocking realities of raising children with disabilities, and why society needs to knowEllen Seidmanhttp://www.blogger.com/profile/01433429847255621203noreply@blogger.comBlogger23125tag:blogger.com,1999:blog-401303964563152307.post-89288597813064051182017-06-27T17:13:51.170-04:002017-06-27T17:13:51.170-04:00Omg I think the fact you refer to any human being ...Omg I think the fact you refer to any human being with a heart and soul as ' it ' is abhorrent enough but then to suggest that they should b put out of theit misery is equally as vile. You clearly have no understanding of anybody with additional needs so should keep your disgusting comments to yourself. It is vile disgusting beings who hold such disgusting views that should be put of their misery to save those of us who actually do have a heart and soul for being forced to read your vile comments. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-5762070887041027232017-06-27T17:09:46.416-04:002017-06-27T17:09:46.416-04:00Omg I think the fact you refer to any human being ...Omg I think the fact you refer to any human being with a heart and soul as ' it ' is abhorrent enough but then to suggest that they should b put out of theit misery is equally as vile. You clearly have no understanding of anybody with additional needs so should keep your disgusting comments to yourself. It is vile disgusting beings who hold such disgusting views that should be put of their misery to save those of us who actually do have a heart and soul for being forced to read your vile comments. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-74507267311477715402016-08-13T09:40:51.583-04:002016-08-13T09:40:51.583-04:00omg. i dont understand what its like but i do know...omg. i dont understand what its like but i do know that some women get attached to still born fetuses and keep them for awhile untill they can move on. im sure its harder to move on when its still physically alive. but at some point i think its best to realize that even if its alive that dosnt mean its living or that its not a vegetable. try to think about how it would be if you didnt give birth to it and it didnt look like you.If they would never notice the difference if you left them with someone else or you sat them on a chair and hooked them up to a machine to live, then they dont love you or even have enough mental capacity to understand love. they dont get any benefits from your parenting that they couldnt get from a home or life support. you need to see through your own denial and understand your doing it for yourself and no different from the crazy person that carries around a doll and talks to it and eats with it at the table. you gave birth to a doll that eats and poops youre not helping yourself or it by pretending its living and moving it around and doing every life function for it. its not going to learn or get to know you or feel love. let it go and live your life. if i end up where i cant comunicate, or understand words, or walk, or bathe, or not poop on myself please for the love of god put me out of my misery. I would hate to be alive but not able to live and keep other people from living because of that, i cant think of a better definition of hell. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-69144123628529011252014-07-18T12:25:35.681-04:002014-07-18T12:25:35.681-04:00I agree wholeheartedly! It is NO easy task trying...I agree wholeheartedly! It is NO easy task trying to change a child that almost 5ft. tall and weighs 60+ lbs. Growing With Kerstinhttps://www.blogger.com/profile/11255235790080688158noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-39410119270401104762014-07-16T12:36:10.326-04:002014-07-16T12:36:10.326-04:00Well said:)Well said:)WriterChickNjhttps://www.blogger.com/profile/15272689146917304404noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-67134412759442435212014-07-16T10:53:41.568-04:002014-07-16T10:53:41.568-04:00The comments about letting the boy go are very ups...The comments about letting the boy go are very upsetting. They are not keeping him alive by machine. He is breathing on his own. My son is very similar to Justin and is 9 years old. There is not a choice to let them die - they are not on a vent. I guess you could stop feeding them but that is cruel and neglectful and I would think would be murder. Our precious children deserve love and proper care. They have beautiful souls and it is not their fault that they have brain injury etc. I wish people would understand that it can happen to anyone and at anytime in their life span. Accidents happen etc. I know a precious girl who was freak'n bit by a misquote and it gave her West Nile Encephalitis causing severe brain injury. She lived for about 4 years after that. Her family did everything they could for her. Brain injury and or a disability does not discriminate. We need to have compassion and services in place to help when it does happen.jendarwadehttps://www.blogger.com/profile/09877456407903250231noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-71567283745649924762014-07-16T07:04:38.374-04:002014-07-16T07:04:38.374-04:00Wow, I hadn't heard about this story (busy tak...Wow, I hadn't heard about this story (busy taking care of my disabled adult daughter and my elderly mother) and missed all the fuss. I just see love in the father's face . I'm also thinking there's probably exhaustion behind that expression, too. I don't think the average person who doesn't have any thing to do with the disabled have any clue what it's like to take care of someone in this way who is not an infant. It's a non-stop, exhaustive never ending process. I don't know that God gave me my daughter because I can handle it all better - there are a lot of days I don't think I handle it very well at all. But I keep plugging along because I don't have a choice...and neither does my daughter. Donna Dhttps://www.blogger.com/profile/11119972839438717143noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-3370106751226079082014-07-15T18:59:12.196-04:002014-07-15T18:59:12.196-04:00so interesting how your experiences impact your pe...so interesting how your experiences impact your perceptions. As a parent of a 6 year old son with severe cerebral palsy there was nothing odd or exceptional to me in this photo. In fact my first thought was "that will be us in a few years... I better start working out more". I do believe more of this sort of coverage and education is important for our society and will ultimately result in more compassion for those living special needs.Jessica Linquistnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-50767430264859270822014-07-15T16:57:14.092-04:002014-07-15T16:57:14.092-04:00I can understand the concern about showing him in ...I can understand the concern about showing him in his diaper. He's almost a grown man, and is entitled to his dignity, which may mean that he would not feel comfortable being shown in essentially his underwear. I've seen this discussion before and I know the argument goes both ways, and I can understand why the Lee's chose to use that photo, even if I'm not sure that I agree with it. Anonymoushttps://www.blogger.com/profile/12995570614012976086noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-40463959059253030822014-07-15T16:41:11.579-04:002014-07-15T16:41:11.579-04:00Ellen--you rock. #thatisallEllen--you rock. #thatisallteachmamahttps://www.blogger.com/profile/11185810541933116431noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-66004824512305034502014-07-15T16:00:19.538-04:002014-07-15T16:00:19.538-04:00I understand completely! People have no idea and t...I understand completely! People have no idea and the way they look at you in public is amazing!! I take my Grandaughter everywhere but have to say I feel more at ease and understood at events where other Special needs families are and have an understanding! I actually am almost inviting people to say something to me!! God only gives Special Needs to Families that he know can handle them!!!<br />Maggienoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-10697135276092516932014-07-15T15:33:36.448-04:002014-07-15T15:33:36.448-04:00I'm disappointed that people would make those ...I'm disappointed that people would make those comments. I wasn't offended in any way about that picture or the story. All I say was the dad's face and it looked to me like he was happy to help his son. I would do it if my son (Ds) needed it in a heartbeat. That's what you do when you're a parent--you help your children. <br /><br />No one knows what life will bring.......some people are born with disabilities while others become disabled through accidents or illnesses later in life. If those parents, who said that the Lee family should just let Justin go, were to find out ahead of time that their own children would need round the clock care as adults after a car accident, would they decide to let their own children go so they don't have to deal with that? No? I didn't think so. We all love our children, no matter how they come to us, no matter what they come to us with.Anonymoushttps://www.blogger.com/profile/17913754866057778005noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-35372636628051164192014-07-15T13:49:02.843-04:002014-07-15T13:49:02.843-04:00Thanks for sharing this experience and for having ...Thanks for sharing this experience and for having this experience with your son. This is real life, people of all abilities needing a variety of supports to do every day things and parents loving and caring for their children.Jennifer Van Rooyhttp://www.orioniso.comnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-81995172897764262072014-07-15T13:39:41.296-04:002014-07-15T13:39:41.296-04:00Very well said Ellen xVery well said Ellen xLooking for Blue Skyhttps://www.blogger.com/profile/10010049814419812468noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-61496934201265569632014-07-15T13:28:12.429-04:002014-07-15T13:28:12.429-04:00Hi Ellen, it's been a few weeks since I've...Hi Ellen, it's been a few weeks since I've read your blog, lots to catch up on xx we are on holiday right now and we have learnt a lot about disability access in Europe. Bron x I have a new blog now too xxAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-49454915061084468292014-07-15T13:17:13.068-04:002014-07-15T13:17:13.068-04:00As alway, Ellen, wonderful insight and perspective...As alway, Ellen, wonderful insight and perspective. One thing I think many people don't understand when they ask about whether Justin would have "wanted" this is that he may not have the cognitive ability to make that decision. While I don't have a special needs child, I feel fortunate to have an interesting insight because my uncle worked with adults with cognitive challenges and I had the privilege to spend a lot of time with him and them when I was a child. Even as adults, all of the clients at the center were brought their by their parents or another caregiver. Just because the chronological age may indicate that someone has the ability to make their own decisions doesn't mean it's appropriate. Not all special needs come with cognitive delays, and it's important to know that.Sara Hawkinshttp://www.savingforsomeday.comnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-83144306346923575922014-07-15T12:20:47.906-04:002014-07-15T12:20:47.906-04:00I've experienced the swim trunk issue. The lea...I've experienced the swim trunk issue. The learning center I work at took a field trip to the local sprang park. One of our kids (with CP) was without a shirt. We got several snide remarks one about how what he was wearing was "inappropriate." I was extremely annoyed. Then, same park, same day, we had another incident. A little girl saw Cameron (the child with CP) and decided she wanted to be friends. She gave Cameron a shovel to scrape across the ground (he likes the sound), and she would fill buckets of water to (gently) pour on him. Cameron loves it. <br /><br />As we were leaving, the little girl's mom asked for the shovel back. We handed it to her, and the lady grasped it with the tips of her fingers, like it was 'diseased' or something. We were shocked. I was watching Cameron the whole time and it wasn't as if he had put the toy in his mouth or anything. One of the employees pulled a five dollar bill out of her purse and handed it to the woman, to cover the cost of the shovel. The woman dropped the shovel like it was burning coal. I just do not understand why some adults are so disturbed and/or disgusted by people with disabilities. Anonymoushttps://www.blogger.com/profile/08196730792135710489noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-66233676303688670512014-07-15T11:33:01.141-04:002014-07-15T11:33:01.141-04:00I am not really familiar with physical disability ...I am not really familiar with physical disability culture, but I understand the isolation aspects. Since I am socially awkward, PE is tortureAnonymoushttps://www.blogger.com/profile/10616282351291824392noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-1827769505185948122014-07-15T10:59:04.724-04:002014-07-15T10:59:04.724-04:00One of my favorite things at Morgans Wonderland wa...One of my favorite things at Morgans Wonderland was an adult sized changing table. I think they should be mandatory! Jennifer Ortizhttps://www.blogger.com/profile/14350225247489608653noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-15183529867308472422014-07-15T09:51:38.075-04:002014-07-15T09:51:38.075-04:00My sister became disabled due to MS. We went to an...My sister became disabled due to MS. We went to an adaptive equipment show - basically a trade show for those with disabilities - and noticed how a lot of it is to address the same needs - eating, transferring, and bathroom. These are the realities everyone absolutely has to cover every single day, and dealing with it when the other person is in an adult-sized body is difficult. I thought the photo was beautiful, because the love shines from the father's eyes.SUEB0Bhttps://www.blogger.com/profile/16301963922769609715noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-79507841517157177862014-07-15T09:18:19.296-04:002014-07-15T09:18:19.296-04:00I am so glad you wrote this - I read that article ...I am so glad you wrote this - I read that article and could not believe the response/follow up on NPR (usually my favorite). I was so angry by the public reaction. You try carrying a 16 year old kid for their shower, or to the toilet, or anything else that those amazing parents have to do everyday for their son. And what was their reward for opening up and sharing their lives? More cruelty and horrendous evidence of lack of public awareness or basic empathy. Shame.Julie Steinberghttps://www.blogger.com/profile/05749608879067906559noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-39231476010068889092014-07-15T08:47:28.928-04:002014-07-15T08:47:28.928-04:00I do not find the photo offensive at all. It's...I do not find the photo offensive at all. It's basically my life with my 11 year old daughter. I would take pause at having a photo of her in just her diaper because I do agree that it is a question of dignity. If Justin was okay with it, then absolutely fine. If not, then no. But was he asked or was it just assumed he didn't have the capability to understand? If you didn't know my daughter very well, it would be easy to think asking her a question like this would be pointless but the fact is, she understands so much more than the world in general expects her to. She can make choices when given the opportunity so I'm just wondering if Justin was given the choice? No judgement for the parents being fine with the photo, just curious.smilinjohttps://www.blogger.com/profile/16774270348325860387noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-51966263739518433142014-07-15T08:07:59.381-04:002014-07-15T08:07:59.381-04:00Exactly. People don't know what it's like....Exactly. People don't know what it's like. Justin may not have wanted that photo shared, but his parents are not only his caretakers, they are his decision makers. If they felt it would raise awareness and was in his best interest, then it was. Momohttp://www.momofali.comnoreply@blogger.com