tag:blogger.com,1999:blog-401303964563152307.post7282389851003041733..comments2024-03-28T03:35:52.176-04:00Comments on Love That Max : Are we too sucked into Special Needs World?Ellen Seidmanhttp://www.blogger.com/profile/01433429847255621203noreply@blogger.comBlogger61125tag:blogger.com,1999:blog-401303964563152307.post-73091838801328342982012-08-16T19:33:40.504-04:002012-08-16T19:33:40.504-04:00I'm slightly speech delayed and love acting.I'm slightly speech delayed and love acting.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-12962288760277957602012-05-28T04:55:47.868-04:002012-05-28T04:55:47.868-04:00I would TOTALLY get Max in Boy Scouts.I was in Gir...I would TOTALLY get Max in Boy Scouts.I was in Girl Scouts for 7 years. Scouting is 1 of the most accepting groups therefore making it a good inclusnariy program.Besides It would take some weight off your shouldors and put it on Daves!Kthrynnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-31146359432278633972011-12-31T18:34:53.255-05:002011-12-31T18:34:53.255-05:00My daughter does regular ballet and it has been wo...My daughter does regular ballet and it has been wonderful! She has physical disablitites, hearing impaired, developmental delayed. She started ballet actually using a walker but loved it. I observe from the outside room with monitors and if she needs a pull up change they bring her to me, but other then that the teacher is wonderful with her and helps her adjust to her needs, she does now walk but has a hard time bending, jumping and a few other things. But it has been wonderful. She also goes to regular Sunday school and never seems to have issues. She use to have a buddy teacher who was her friend but now she does not need it as much.Rachelhttps://www.blogger.com/profile/09476804178353228371noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-17086057646769058462011-12-30T15:48:24.819-05:002011-12-30T15:48:24.819-05:00Agree absolutely with Jenna. The mix is very impor...Agree absolutely with Jenna. The mix is very important for my son and he definitely has benefited from it.<br />But I do understand that it is the parents' decision when and how much this happens. We are on the cusp of deciding to put Ashley into a Special School After 3 and a bit years in mainstream.dderbydavehttps://www.blogger.com/profile/07448901859808979140noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-74923623120999492522011-12-29T05:39:11.032-05:002011-12-29T05:39:11.032-05:00My best friend in primary school has severe CP. An...My best friend in primary school has severe CP. And by severe, I mean can't walk (at all), can't talk (he says about 3 words that you have to know him well to be able to understand)... he needs assistance for everything.<br />Even though he can't speak, he always laughed at my stupid jokes, we held great conversations as long as I made everything yes/no questions. I got to know him quite well.<br /><br />However, he is now in his early twenties. I call to arrange a catchup, and his parents don't bother to get back to me. He attends a day program for disabled adults. I would love to spend time with him and catch up with him, but his parents don't make the time. And he can't exactly pick up the phone and call me whenever he wants to. <br />I'm sure that his parents don't isolate him on purpose - it probably just doesn't occur to them that there's someone who enjoys his company and wants to spend time with him without them always being there! <br /><br />Special needs people definitely need to spend time with typical people. I miss my friend. And the older he gets, the harder it seems to be to see him.Jayhttps://www.blogger.com/profile/16582185250526797407noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-48120443564094960182011-05-24T08:19:59.281-04:002011-05-24T08:19:59.281-04:00Ellen PLEASE PLEASE PLEASE send Max ro a camp with...Ellen PLEASE PLEASE PLEASE send Max ro a camp with typical kids my mom never let me go anywhere without her - aside from the two years I was in boarding school - and it really made me aware of the fact that I was differnt and trust me when I say that you DO NOT want that for Max.Nishahttp://nisha360.wordpress.com/noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-73673225392330326462011-05-24T00:06:47.733-04:002011-05-24T00:06:47.733-04:00I say go for it! One thing that for some reason or...I say go for it! One thing that for some reason or another even though he has a diagnosis I try and treat him as much like a normal 4 year old as possible. Right now the only thing Alvin does that is SN is preschool. He is in a mainstream gymnastics class and has learned a lot not only about gymnastics but also about how to interact with the other normal kids.<br /><br />Even if its just for a couple of days it will be a challenge for him. He just might surprise you in how well he could do!Vhttps://www.blogger.com/profile/06882892812988500526noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-8583775946585857122011-05-23T16:30:24.034-04:002011-05-23T16:30:24.034-04:00This was such a great post! I subscribe to your RS...This was such a great post! I subscribe to your RSS feed and read every blog post. This entry prompted me to write my first comment because it is exactly what I am looking at in grad school. <br /><br />My undergrad degree is in special ed, my masters thesis focused on youth programs, and for my doctoral dissertation I am studying high school extracurricular activity participation by students with disabilities. <br /><br />As a researcher, I'm very interested in perceptions of disability, which you often address in your blog, and also family interactions and how those interactions shape actions. The comments here today are exactly what I am hoping to learn as I survey youth and program leaders, and interview youth and parents!<br /><br />Just wanted to say that I really appreciate your blog, and I often share it with my friends who have children with disabilities.cmghttps://www.blogger.com/profile/05664855059313532586noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-25684318846050736672011-05-22T21:22:51.960-04:002011-05-22T21:22:51.960-04:00Hi Ellen, First, I don't think that your appro...Hi Ellen, First, I don't think that your approach is wrong. We SN parents make each decision with our child's best interest in mind. Even if the pattern of decisions reveals a particular philosophy, the child --and not the philosophy -- continues driving our decisions. Maybe that means trying a different path for a particular decision, and maybe not. My son is fully mainstreamed, and I often question whether he'd be better off having more experiences where he is not "the only one" with a physical disability. <br /><br />Second, on your particular question: we're trying a non-SN sleepaway this year! A traditional hiking-centric camp in the mountains (never mind a sports camp) would be a nightmare for my son, but we found a non-competitive arts and music camp that we are excited about. They are emphasize diversity and respect for differences. A very many of the campers are "quirky" (diagnosable or not) in ways that lead the camp to create a culture of acceptance, and to offer lots of support to the kids. The sports offerings are all optional and include yoga and gardening. And, the staff-camper ratio is 2-1. He won't be going until later in the summer, but we can report back! <br /><br />Good luck with the decision! Some days I am more worried about how *I* will cope with my son being away than I am about how he will cope!<br /><br />LisaLisanoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-79974565753720296842011-05-22T13:05:59.972-04:002011-05-22T13:05:59.972-04:00GingerB, I think your point about "what will ...GingerB, I think your point about "what will the other kids do when the counselors aren't looking?" is something to consider. It is all well and good for a parent to say, "My kid has a right to be here, so I'll just sign him/her up, and they'll just have to deal with it!" But that's your kid you're putting on the front lines, and if you want this activity to be a positive experience for your kid, it takes leadership from the staff and cooperation on all sides. We all know that kids can be cruel and that bullying is a problem everywhere, and the staff needs to be educated about your child's needs and how best to meet them in the group, about how to head off potential problems, etc. If the staff feels ill-prepared or fearful, your child may be resented rather than welcomed.Galenhttps://www.blogger.com/profile/02133622477462629829noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-26358128543577805772011-05-22T13:00:23.962-04:002011-05-22T13:00:23.962-04:00I'm gonna be the contrarian, here, (AGAIN!!!!)...I'm gonna be the contrarian, here, (AGAIN!!!!) and ask the question: What is "normal?" To me, what's "normal" is an environment where your kid is 1. SAFE, 2. Happy, 3. Acknowledged and 4. Accomodated. <br /><br />I would not trust a "regular" camp with the high school and college "counsellors" to have the tools to deal with my oldest-- or Max. I just don't think they have the skillset. Besides, most of those camps are more interested in profit than anything else. I won't even raise the "PERV!!" alert again! Music classes and assemblies at school and sports day are one thing, but trusting a kid barely out of high school to supervise/medicate/care for/be aware of my kid's needs, is a horse of a different color. My youngest, even with his clipped wing, can tell you what he likes/wants, doesn't like/want, and can scream like hell if there are any issues. My oldest doesn't have that ability to articlate and could easily become a victim of foul-minded counsellors or campers. Not that I'd do the "camp" thing anyway (so you can discount my remarks entirely if you'd like!!!). <br /><br />We go camping all right, every year, by a lake, in tents and a pop-up, and the kids get fishing and nature lessons from grampa....and that's fine with me and them. If they ever want to invite a little friend, that's fine with me too! <br /><br />To sum up--it's really not about what I want or think--it's what's best for my kids. I don't really care about inclusion to the point where I feel like I'm depriving my oldest if he isn't shoved into a scenario where he'll be last/slowest/unable to grasp the concept--but "included" with the "normal" kids; they get enough of that crap day-to-day when they're at school and out-and-about. If they are happy, I am happy. If their lives are busy and filled, who am I to be the one to force them to participate in activities where they might be severely disadvantaged and singled out because of it?Felicianoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-83753518804694968782011-05-22T02:44:12.947-04:002011-05-22T02:44:12.947-04:00My Hannah is much less impaired by her CP than man...My Hannah is much less impaired by her CP than many kids are. Although she didn't walk until 20 months, she does walk, and she runs and jumps. One of our therpists suggested dance - with a possible enrollment in dancers with disabilities for just $10, while regular toddler classes cost $250. Schedule wise the other wouldn't work anyway, but I wanted H learning from typically developing peers, so we signed up for the regular class and it has been wonderful. H moves more slowly than others, and doesn't corner well so if she gets hit by a bigger kid going fast she gets knocked down. Only half those kids were toliet trained so we didn't stand out there, and enough other kids had behavioral issues that H just came across as really compliant and smart and having a great time. I don't know if this will work as well on faster moving activities, such as soccer, but we certainly plan to try. <br /><br />If I were you, and Max went to a sleepaway camp, I'd worry most about what the other kids might be like when the counselor isn't looking. This stuff terrifies me now even though we've never experienced it. Many people can't tell H has issues at all unless they spend a bit of time with her, but I don't know what will happen later on, if the drooling keeps going, or she has very obvious braces, and so on. I hope some of you with more experience will tell us good stuff . . . this part scares me witless.<br /><br />Thanks as always for an insightful post. I love this cooperative learning we've got going here.GingerBhttps://www.blogger.com/profile/09976594257345428901noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-5967052037911099732011-05-21T23:34:04.161-04:002011-05-21T23:34:04.161-04:00It turns out that out special recreation associati...It turns out that out special recreation association will provide an aide if your special needs child wants to be in a regular park district activity. So for the summer I have my child enrolled in gymnastics and also a week long sports camp.<br /><br />There is also a very good dance school in our town and I approached them a few months ago about putting my daughter in their classes and if they would be OK with me sending my sitter. Their response was, no sitter needed, we have been integrating children with physical and cognitive disabilities for 20 years.Sineadnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-66102208423692642282011-05-21T18:37:27.333-04:002011-05-21T18:37:27.333-04:00My son has quite a lot of physical difficulties an...My son has quite a lot of physical difficulties and is medically complex, but I go out of my way to get him mixing with mainstream children. Not only is it a great way of educating children that SN kids aren't scary, but Dominic will have to exist in a world that doesn't necessarily make allowances, and I want to prepare him for thatRenatahttp://www.justbringthechocolate.comnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-69293453981822968882011-05-21T10:18:55.668-04:002011-05-21T10:18:55.668-04:00I know this isn't the question you were asking...I know this isn't the question you were asking, but I went to an inclusive preschool and elementary school so inclusion was completely a fact of life for me growing up. I also went to a day/overnight camp that did inclusion really well. If you got in touch with them they may be able to give you ideas of camps closer to home or names of parents you could talk to. http://www.campfireusacny.org/talooli/TalooliHome.aspAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-52877266922023726872011-05-21T10:03:10.885-04:002011-05-21T10:03:10.885-04:00Typical camps will probably claim that they will n...Typical camps will probably claim that they will need to get more insurance for Max, so be prepared!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-64693915451156524472011-05-21T08:27:37.272-04:002011-05-21T08:27:37.272-04:00Oh, and I have to say, I think it is SO important ...Oh, and I have to say, I think it is SO important for NT kids to be with kids with disabilties. My AYSO team is kids with and without special needs and I loooooooooove it. I think it is SO important for people to get to know children with special needs. It alters the way you move about the world. It changes your vocabulary (goodbye r word), and it teaches children to love children who are different frm them.Mollyhttps://www.blogger.com/profile/15881590483174001768noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-60806438911788998332011-05-21T08:15:23.323-04:002011-05-21T08:15:23.323-04:00It depends on the kid, 100%. And the program. You ...It depends on the kid, 100%. And the program. You want some place where Max will thrive, and those mainstream staff need to be able to step it up and ensure that he is thriving and is included. <br /><br />Love the idea of inclusive activites, although the liberal chick in me can't abide the idea of boy scouts. My mom yanked my brother after she found out about their gay ban.Mollyhttps://www.blogger.com/profile/15881590483174001768noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-51123732311546940562011-05-21T02:17:55.188-04:002011-05-21T02:17:55.188-04:00Our world has been opposite. Zoe has been the only...Our world has been opposite. Zoe has been the only kid in a walker and wheelchair,throughout our social circle.. neighborhood, church , school, and recently she began holding back a bit, holding herself to the expectation that she had to do things " just like everyone else." I wrote about the realization here..<br /> <br />http://www.5minutesforspecialneeds.com/7746/her-way-one-half-turn-at-time/<br /><br />My reaction was fast and furious- and I felt it necessary to expose her to kids with disabilities- doing everyday things, sports, dance etc. It's a balancing act we can never perfect, yet it is good to always push..suzanne Perrymanhttp://www.specialneedsmom.comnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-90357152668631418302011-05-20T21:29:45.620-04:002011-05-20T21:29:45.620-04:00I was too lazy to read the (41!) previous comments...I was too lazy to read the (41!) previous comments, so hopefully I'm not just repeating similar stuff to everyone else.<br /><br />Camp possibilities as you describe definitely exist if you look for them. I was involved years ago with a Christian camp in Canada. Camp counselors could have a cabin or be matched one-to-one with someone with special needs at the regular girls' or boys' camps. I suspect they stayed in a cabin with all the rest and were included according to their own abilities with the help of their buddy. Probably a good experience for all involved: kids and leaders.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-92058409105109679792011-05-20T20:45:02.797-04:002011-05-20T20:45:02.797-04:00My daughter is 5. She is multiply disabled and re...My daughter is 5. She is multiply disabled and requires many services in her regular ed classroom. Most of them push in to the classroom. She is receiving summer services at her regular camps this summer or at home. She only sometimes has contact with others with significant disabilities. We talk about it and plan trips to places where she will have that exposure. The majority of people she will come in contact with in life will not use a wheelchair. She has to be used to socializing with them. The time to start building life-long friendships is when she is little. She has a best friend in school who comes over to play and she has several other friends, too. And this is a kid who is non-verbal, uses a wheelchair and has a trach! Kids like kids no matter what! If inclusion can be left up to the kids, it will work.Anonymoushttps://www.blogger.com/profile/08008275331445301888noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-76532419420297213542011-05-20T20:21:48.844-04:002011-05-20T20:21:48.844-04:00I'm so happy to read this post from you. I...I'm so happy to read this post from you. I've been wondering when this would come:-) Max is so lucky to have a mom who is so open to new experiences even if it's scary. I actually have a friend who just signs her son up from t-ball and such and doesn't even give them a chance to say no. After all, it's their right. If they say they can't be on the team, it's discrimination. <br /><br />I don't fault the "special" organizations, but sometimes they do more to divide our kids than help them. There's definitely a place for them, and some families love them. But for us, we're taking the inclusive route...for now:-)Jenniferhttps://www.blogger.com/profile/16134973524794977697noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-67690988370090797652011-05-20T19:11:17.721-04:002011-05-20T19:11:17.721-04:00We run a special needs cub scout program here is s...We run a special needs cub scout program here is saugerties Ny and our special needs scouts are inculded in the typical scout pack. and they do go to scout camp and make the pine wood derby cars!april corvin from starlight starbrightnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-26156419510952179942011-05-20T18:26:26.066-04:002011-05-20T18:26:26.066-04:00Ellen,
another thoughtful post that shows how we a...Ellen,<br />another thoughtful post that shows how we are always learning and trying new things. my thoughts are to start small - like a neighborhood type of activity w. inclusion or a religious activity w. inclusion or even an after school care inclusion one time per week. then you can see what sort of things Max would be interested in. One thing we did was use the after school sports teams at our local elementary school - it was non competitive and included a range of age groups. but we also did Special Olympics (started with his very first team here) then moved on to non competitive sports teams usually w. a variety of ages - my son would not be on the same level physically as his peers. we still balance both - special needs things and non, but by starting out small, you learn different things and see what sort of activity/coach works and what doesn't. we are still learning. another thing is to be involved. I attend the typical sleepover camp as an assistant for the entire group he's with, so I can make sure things go smoothly. Maybe next year I'll feel OK for him to go on his own. That's how we did it. It is a gradual thing that goes w. your comfort level and ability to fit things in. You'll find a camp that both Max and Sabrina can go to. I know it. I found it sometimes difficult though to fit more in when there were so many therapies to take my son to. As the therapies diminished or we cut them, it opened up more time for these things - and they were in themselves forms of PT/OT and speech.<br />you rock ellen!!!!<br />kctAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-24219633509833084422011-05-20T17:17:50.429-04:002011-05-20T17:17:50.429-04:00My little guy doesn't have quite the same chal...My little guy doesn't have quite the same challenges as Max, but he has some major motor planning issues, and is severely speech delayed (as in, Thank goodness he can use the iPad to tell me when he has to pee). He does special needs preschool right now, but next year he'll be in an integrated pre-k class with typical kids, and he does swim lessons at the YMCA - he started in February, and can now dog paddle! It's hard to find the balance, I agree, but I really try, because I've found that the non-special needs activites have higher expecations, and he almost always is able to rise to the challenge.Pattyhttps://www.blogger.com/profile/17769842129536893837noreply@blogger.com