tag:blogger.com,1999:blog-401303964563152307.post2500089818389532949..comments2024-03-17T12:02:12.410-04:00Comments on Love That Max : I stared at an adult with disabilities, and wondered if I was seeing Max's futureEllen Seidmanhttp://www.blogger.com/profile/01433429847255621203noreply@blogger.comBlogger68125tag:blogger.com,1999:blog-401303964563152307.post-466321978421896432014-01-30T08:59:50.148-05:002014-01-30T08:59:50.148-05:00Beautiful reply. Thank you. As a grandmother of a ...Beautiful reply. Thank you. As a grandmother of a little boy with special needs, I needed to read both this article and your reply, Alexandra. Such encouragement. I like how honestly Max's mother shared her heart. If we can't speak honestly about what we're feeling - if we have to tread softly about what other people might think about our feelings - we're in a sad state.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-2266654380853150392012-01-20T00:10:34.031-05:002012-01-20T00:10:34.031-05:00For some reason, when i read this post i teared up...For some reason, when i read this post i teared up. I'm not sure if they were tears of joy, sympathy, or mourning and wondering over my own future. As ive commented elsewhere on your blog, im a 28 year old male living with an ASD.. I have a college degree. I work as a substitute teacher. The disability makes things difficult some days with organization and managing the kids and all the discipline, but in some circumstances, i excel. I wonder about my future too. If I, a college graduate with a disability who has already overcome huge obstacles in independence (not the least of which is getting my drivers license and studying abroad in China) have worries about my future and don't know what kind of life i can lead and sustain with my disability, then you can rest easy. Encourage Max to keep striving toward independence, and he will get there. You have to push hard, and NOT be afraid to to take risks in trying things. Don't be afraid to dream big. If I didn't push myself, i never would have gotten my drivers license. I practiced and practiced driving, and this was years after i had given up the idea of driving after flunking out of drivers ed in high school. If i didnt take risks, i wouldn't have been daring to spend 4 weeks studying abroad at Shanghai University and 1 week touring Beijing afterward. But i did, and it is one of the highlights of my life. If i didnt push hard, i wouldnt have completed my bachelors degree and a 124-page year long thesis. I did, and was extremely proud to walk across the stage wearing honor chords (not university honors, but membership in a sociology honor society). <br /><br />However, keep a balance between pushing hard and dreaming big, and having too high expectations. The trick is knowing when you're really not being realistic. Ive strlugged with that too. I used to want to be a priest that travels across the US giving sermons..that is not realistic. But, that doesnt mean i can't get married and raise a family, it just means those things are few years off yet. forgive the uneven flow of ideas on that last sentence. <br /><br />Dream Big, encourage him to try hard, and love him and accept him where he is, isteand of worrying about where he will be. I have dreams of getting a Master's in Occupational Therapy. I looked athe course descriptions for it and im like WOAH WOAH WOAH.. im taking baby steps toward the goal.. remember, baby steps. <br /><br />Peace out!Rob Shttps://www.blogger.com/profile/12832047601196829090noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-66631307123151184322010-11-29T22:40:25.414-05:002010-11-29T22:40:25.414-05:00I'm sorry that I came late to the party.
I th...I'm sorry that I came late to the party.<br /><br />I thought I was the only one that felt like this - and I've felt so guilty for it! <br /><br />When Mango was first born, there was the hemorrhage and surgeries, and I told myself, "well, there goes pro-football - now we'll have to join the swim team and be a great Olympian!". Later when we got the CP diagnosis, I adjusted again, and said "ok, to hell with swimming - we'll be a top-shelf attorney!". After that we were told about the 'incredible insult' his brain had suffered. Funny - they used to call that 'brain damage' - but now it's just an 'insult'.<br /><br />He's my only child. I was always told I'd never have children of my own. When I got pregnant, I thought it was a miracle. I had such dreams! He still is a miracle. He's so beautiful. So happy. So loving. He's almost two now. I can't yet handle seeing an adult with this type of disabilty - what they can and can't do - their level of function. It hurts and it scares. I'm not there yet.jerrihttps://www.blogger.com/profile/17470360086223393027noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-62785220889835593162010-08-31T17:47:13.726-04:002010-08-31T17:47:13.726-04:00I can absolutely identify with this post. My husba...I can absolutely identify with this post. My husband and I have had such similar experiences.<br /><br />But what I wanted to take a minute and point out is that there are times WE (my husband and/or myself) stare – for any number of reasons – and another kid/parent/family with a disability misinterprets our staring. <br /><br />Given, good manners would say that you're not really ever supposed to stare but my point is that as the parent of a kid with Down Syndrome, I have learned NOT to always think the worst. If someone is staring they might be connected to our "special" group in some way.<br /><br />Maybe they are the grandparent of a newly born child with a disability or they have a sister with CP or they teach SpecEd... <br /><br />I guess I've found that I'm less affected by people staring at us b/c you just can't know what the thoughts are that are accompanying those looks you're getting.<br /><br />SAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-79871401885649638822010-08-17T20:19:12.756-04:002010-08-17T20:19:12.756-04:00Hi, Ellen!
(By the way, I'm the deb that'...Hi, Ellen!<br /><br />(By the way, I'm the deb that's been sharing email with you about the article. My son is Jake.)<br /><br />Since emailing with you, I've been reading randomly through your blog and was drawn to this post. Why? Well, I had my own experience that also brought all of the uncertainty and loss to the surface, and I just had to read how another parent felt. Thanks for sharing.<br /><br />Here's my post about a similar experience: http://movingtoazonedefense.blogspot.com/2009/10/doppelganger.html<br /><br />deb<br /><br />PS Just had to say that I love that your name is Ellen. One of my closest friends is also an Ellen and had a son with special needs. :)debhttps://www.blogger.com/profile/17518616941158739491noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-7119938858876636202010-03-08T00:26:26.043-05:002010-03-08T00:26:26.043-05:00I'm very late adding to this thread, but I oft...I'm very late adding to this thread, but I often have the same response as you do, Ellen. I *know* that I'll grow into Hallie's disabilities, but I am not sure that I'll ever give up the grief that I feel over them. With autism, it always seems so murky. We're not sure where she is cognitively, and we're not sure whether what we are doing will help her cognitive skills or her capacity to engage with others. We just keep doing what we're doing because, like you say, if it doesn't hurt her and it might help her, we're there. <br /><br />But it's hard: our expectations for our children are, by definition, so high because we have to have hope, but as the days and weeks and months pass, we also can't afford to hold out as much hope as we once might have because hope, when dashed, really hurts.abbyhttps://www.blogger.com/profile/03403145277760263562noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-84136795043900715012010-02-26T01:29:39.875-05:002010-02-26T01:29:39.875-05:00I think you are spot on that your feelings one can...I think you are spot on that your feelings one can only understand as the parent of a child with disabilties rather than as the person with disabilities themselves. There is a recently published autobiograhpy by a man born without legs who goes around the world photograhing himself. He is happy with his life and who he is. But he talks about how hard he would find it to have a child with the same disabilities!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-81253951793821338512010-02-23T14:35:34.266-05:002010-02-23T14:35:34.266-05:00My son is 6 and cognitively 9-15 months. He is ver...My son is 6 and cognitively 9-15 months. He is very sweet and social -- but nonverbal and he does not seem to understand very much at all. We absolutely adore him. He is transitioning to Kindergarten next year and his current teacher told us that his classroom will focus on things like understanding money vs. algebra -- but that he would still have a math curriculum, etc. even though he will not be mainstreamed. My husband and I looked at each other -- it was hard to hear that this will be the limit of what my son will probably learn -- and harder still to understand that understanding money may be beyond his ability. One day at a time seems the only way to make everything work. Honestly, if I thought that my son would ever have the cognitive ability to be a bagger at Whole Foods I would be overjoyed.<br /><br />I too find myself "staring" at children and adults with disabilities and have to stop myself -- it is because I just want to run up to them and say, "I understand" -- it is like meeting a long lost relative -- only I realize at the last minute that not everyone may see the world as I do. <br /><br />Thank you for your wonderful blog.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-69340348911637746022010-02-23T11:53:22.291-05:002010-02-23T11:53:22.291-05:00Read your confession about the girl with Down Synd...Read your confession about the girl with Down Syndrome who you observed working. I am the mother of a 16 year old girl with DS. When I read your words, I wondered how you had heard my own very similar thoughts. After parenting Chloe for so long I have gained perspective that you, too will get in a few years. Don't let yourself get too far ahead in your hopes and worries about your son's life. Let yourself go about one year out for planning purposes. You wouldn't know what was going to happen if he were a regular kid, so why add that burden to your already bigger job as his mom? You spoke of mourning the loss of the child you fantisized about having. I did, too. I wouldn't trade Chloe for anyone else, but I have learned to slow down and adjust my hopes for her. She has taught me to keep it real and I am a better mom for it.momofchloehttps://www.blogger.com/profile/00114753013389217156noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-33048521826625795772010-02-19T06:53:56.086-05:002010-02-19T06:53:56.086-05:00as i am dealing with something similar, this issue...as i am dealing with something similar, this issue seems to be cropping up everywhere i look. a sign, perhaps? <br /><br />i don't think we, as parents, really realize how we load expectations onto the tiny shoulders of our kids, from the get-go. this plays out in various forms as they get older. many parents live vicariously through their kids and don't realize it. in a way, those of us whose kids face REAL challenges are given a gift, even though it doesn't feel like it. or at least, that's what i tell myself. my peers are all crazy about what college their kids will go to, and if their kids are popular, while i am thankful my child MAY actually live to graduate from high school. <br /><br />and i know i sound so cavalier about this, but i have had 16 years of working on accepting the fact that my child's journey is HIS and i need to just love him. but as i tell you all of this, i tell it to myself, too. the past few years have been good, but as he gets closer to being an adult, there are many days that are truly dark for me.<br /><br />anyway, i am rambling... my mind is a mess. but your post spoke to me, this early friday morning, and i wanted to say thank you.<br /><br />you hit on something important, pointing out that there is the disabled person's journey and then, there is the parent's journey. they are inextricably entwined, but very, very different.Debhttps://www.blogger.com/profile/07896271627723253157noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-47425856840291485292010-02-18T15:13:27.363-05:002010-02-18T15:13:27.363-05:00I couldn't read through all the comments, but ...I couldn't read through all the comments, but wanted to say that I have had twinges of the same thought... will my son be like that when he is an adult. My son is only 14 months old with "moderate" CP. <br /><br />We have a great therapy team and we've already seen big improvements, but I don't know what the future will bring. Will his progress continue or start to slow as he gets older? Will he be affected beyond the physical limitations? Communication? Learning or emotional disabilites. <br /><br />I think these feelings come up when I see adults with disabilities because it is a way of coping - of opening myself up to all the possible outcomes. I also try to find comfort in reminding myself that the unknown should not scare me anymore than any other parent. Every parent looks at their child and wonders what the future will bring-joys and challenges.~kathyhttps://www.blogger.com/profile/13066694365574584635noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-16818910579179848532010-02-18T11:32:57.038-05:002010-02-18T11:32:57.038-05:00This is Joyce, to Butterfly. Unfortunately beacuse...This is Joyce, to Butterfly. Unfortunately beacuse you give no link back, I can't respond to you directly. I am so glad you picked up on my references as they were purposely written. The point being, don't stereotype, about anything or anyone. Obviously none of the families of the residents my daughter takes care of ever thought they would be in the situation they are in. None of us can predict the future for anyone, including our children with disabilities.My name is Sarahhttps://www.blogger.com/profile/12532019900834158013noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-20951750838609279112010-02-18T02:38:21.820-05:002010-02-18T02:38:21.820-05:00Hey Ellen,
I'm a 21 year old Sri Lankan with ...Hey Ellen,<br /><br />I'm a 21 year old Sri Lankan with CP. I came across your blog by chance and have been following it ever since. In countries like Sri Lanka most people with disabilities are confined to their homes, get little or no education and have a bleak future. But the situation is changing. Even in my country disabled people are coming out of their shells. <br /><br />I, for example am studying at the University of Colombo. I'm in my 2nd year. I studied at one of the best schools in the country. My parents never gave up on me, even when I wanted to give up they continued to push me. They still do. They never lost their faith in me even when I thought I was useless. My future is not certain. I mean who knows where I might end up or what kind of job I will get? But atleast I know I will be doing something with my life. I will not be lost. People with CP are NORMAL. Parents whose kids do not have disabilities too worry about thier future. It's only natural. Parents worry about their kids all the time, disabled or not. I know that my parents are worried about me, what kind of job I will get, what kind of a husband will I have? Would even get married? I know they are terrified. So am I. Sometimes all I see of my future is just a gaping black hole full of bleak despair. But I can't predict my future anymore than a normal person can.<br /><br />People who do not suffer from disabilities are not certain about their future. No one knows where they will end up. We all fear what we can't see. It's all part of the future and all you can do is keep working to achieve your son's goals. Just like any other parent whose kid does not have disabilities.<br /><br />Be strong. CheersHere on Earthhttps://www.blogger.com/profile/07689040299692375948noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-29620674332865319642010-02-18T02:07:50.641-05:002010-02-18T02:07:50.641-05:00to Joyce:
May I ask what the use of the word '...to Joyce:<br /><br />May I ask what the use of the word 'Jewish'adds to your post? Is it important that the residents of the nursing home in which your daughter works are 'rich JEWISH women'? It really doesnt' even matter that they are rich, despite the fact that you seem deeply interested in the jewels and furs. Elderly folks in nursing homes are often alone for many reasons, whether rich or poor and certainly of any faith.<br /><br />Shame on you. Even as you indict Barbara for being 'insensitive, you come across as a bigot yourself. The shoe is truly on the other foot. Too bad this had to sully the thoughtful --and respectful--responses to this poignant piece.butterflyhttps://www.blogger.com/profile/01225180305895052866noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-44956870276020113742010-02-17T19:30:04.467-05:002010-02-17T19:30:04.467-05:00I'm only now catching up on blogs and I just w...I'm only now catching up on blogs and I just want to say I absolutely understand. I have those thoughts all the time when I see a person with disabilities. The other day I saw a woman in a wheelchair being pushed by another woman. They were both a little dirty and their clothes looked old. The woman pushing the chair talked very quickly while the woman in the chair just stared off into space. I thought, "Oh dear God, don't let that be my daughter in 10 years."<br /><br />The future is scary, but our children are wonderful.<br /><br />Sending you some big Mommy hugs.Renahttps://www.blogger.com/profile/15911608453762091207noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-18490477294216152802010-02-17T16:01:44.012-05:002010-02-17T16:01:44.012-05:00I have a friend who has severe Cerebral Palsy. Sh...I have a friend who has severe Cerebral Palsy. She can't fully take care of herself. Her speech is largely unintelligible. She went to a self-contained school her entire life. Despite this she attended college-(one class at a time) - graduated recently with an A.S., has competed in Miss Wheelchair contests in her state, holds a job and owns her own condo. She gets support for bathing, shopping, etc because she is physically unable to do them alone. She, like Max, never fails to keep challenging herself.<br /><br />Max has a great future-full of possibilities because you keep raising the bar and expecting him to succeed.Chicory Bluehttps://www.blogger.com/profile/01411168515570431153noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-67908614532983669362010-02-17T15:22:07.192-05:002010-02-17T15:22:07.192-05:00There are a couple of individuals with Ds that I s...There are a couple of individuals with Ds that I see at the mall food court - cleaning, and I've seen a female bagger at the grocery store, and a female stocking shelves at CVS. When I'm in the mall food court w/Kayla I, too, often wonder - will that be 'it' for her? Will there be more? Same at the grocery store. I smiled at the bagger and tried to picture Kayla in that roll. Of course I'd like to hope that there will be 'more' for Kayla and we will help her achieve her potential...I've also had this other side of me become 'ok' with the possibility that there just might not be more.<br /><br />Awhile back I did a post where I mentioned this topic of being 'just' a bagger and reconciled it like this - being a bagger, or cleaning tables in the food court even, is an honest job. It's making an honest living. It's providing a service for others and there is nothing 'wrong' with that. <br /><br />Do I look at other baggers, or food court workers in a different light? How come I don't give another thought to the other 10 baggers in the store? they are providing the same service as the one lady who happens to have Ds. <br /><br />So while I would like Kayla to aspire to be 'more' I'm also ok if she is bagging groceries or wiping tables. <br /><br />Great topic!Michellehttps://www.blogger.com/profile/02441176684416139172noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-7807110668886964162010-02-17T10:41:41.399-05:002010-02-17T10:41:41.399-05:00Emma, I love that question on your mind. It track...Emma, I love that question on your mind. It tracks off what Gina was saying and Barbara, too, about the types of opportunities that will be available to people with disabilities as our kids get older. I think that's something to be hopeful about as surely there WILL be more possibilities—and surely WE will make them happen.Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-24640607423066204602010-02-17T09:37:34.332-05:002010-02-17T09:37:34.332-05:00Somehow I missed this post and so am a little late...Somehow I missed this post and so am a little late adding my tuppence.<br /><br />The question that goes through my mind these days when I see an adult with a disability in a job which - in our society - is not considered as a "good job" is:<br /><br />Do they have this job because it's something they want to do or because it was the only job available/offered to the person.<br /><br />Last year I went to a supported employment seminar, the question one speaker asked was "what is the most important consideration in finding a job" - that it is something the person wants to do.<br /><br />In todays job market that is tricky for any of us! I big hindrance to finding work for people with disabilities is discrimination, an unwillingness to let people try jobs other than cleaning tables or packing groceries, not that I have a problem with either of these jobs, it is the question of choices available that is bugging me.<br /><br />We often say that we just want our kids to be happy, but being happy also involves being challenged and feeling satisfied with what we do.<br /><br />I know this is kind of off track with the original post, my mind wanders :-)emmahttps://www.blogger.com/profile/04195918097785592926noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-26850748521832486712010-02-17T08:57:32.033-05:002010-02-17T08:57:32.033-05:00"Water and let grow."
I read that somew..."Water and let grow."<br /><br />I read that somewhere, said by a neuropsychologist, evaluating a child...Loved it.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-9163559880775755172010-02-17T08:09:10.806-05:002010-02-17T08:09:10.806-05:00I'm coming out of lurk mode to say that I have...I'm coming out of lurk mode to say that I have had these exact same thoughts/feelings. I'm guessing from the number of comments that we are not alone. My daughter has DS and for the last two years I have had her portraits done by an awesome photographer who also happens to have Cerebral Palsy. She may do things the same as other photographers, but she does a fab job nonetheless. You can email me at livinforthelove @ gmail.com if you'd like her website address.Brandiehttps://www.blogger.com/profile/01704697731192764110noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-1271945883447933582010-02-17T04:17:09.334-05:002010-02-17T04:17:09.334-05:00Dear Ellen
There is a new CP website www.CerebralP...Dear Ellen<br />There is a new CP website www.CerebralPalsySocial.org and I suspect you will probably want to know about it. It’s for people who cope with cerebral palsy directly or indirectly, on a daily basis.<br /><br />So what can I say about it. It pays to have a look because you’ll see we’ve taken our first steps and now want to increase membership to make it more useful for all who use it.<br /><br />You are invited to open a blog, use the bookmark function, start polling, open a group or join an existing group, connect your Twitter or FriendFeed to your profile, and the options are growing all the time. Most of all, you can stay in touch with your friends and make new ones!<br /><br />So, stay well and stay in touch.<br /><br />The CerebralPalsySocial.org teamCerebral Plasy Socialhttp://www.cerebralpalsylawdoctor.comnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-4695517696780879752010-02-17T03:02:14.109-05:002010-02-17T03:02:14.109-05:00I keep coming back here so you guys can keep teach...I keep coming back here so you guys can keep teaching me stuff. I don't really think so much about Hannah as an adult because I am so busy trying to focus on Hannah right now, but if I do have such thoughts, I still tell myself she is going to college, without considering whether she wants to. Humph. Something to think about.GingerBhttps://www.blogger.com/profile/09976594257345428901noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-18816649244846933172010-02-17T00:47:59.082-05:002010-02-17T00:47:59.082-05:00I have a lot more to say but i need to do homew...I have a lot more to say but i need to do homeworkAZ Chapmanhttps://www.blogger.com/profile/07649451111980332722noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-73482832907960429092010-02-17T00:47:24.435-05:002010-02-17T00:47:24.435-05:00Hay Ellen
first I am not at all mad at y...Hay Ellen <br /><br /> first I am not at all mad at you <br /><br /> seconed from what i have read it seems to me that Max has a stuborn fisty spirt about him. I see him as doing fine when he gets older, He may even go to collage. Programs for people with Intellectual disabilities are starting up all over the area. I think when Max grows up he will express interest in jobs and u know what he will have a job that he wants which will make him happy. <br /><br /> three I will be posting about this supper soonAZ Chapmanhttps://www.blogger.com/profile/07649451111980332722noreply@blogger.com