tag:blogger.com,1999:blog-4675590510792979183.post2786722459046360853..comments2024-03-28T04:11:32.480-04:00Comments on Uncommon Sense: The GatekeepersDanahttp://www.blogger.com/profile/11193445038085911249noreply@blogger.comBlogger21125tag:blogger.com,1999:blog-4675590510792979183.post-35392441699694512232014-05-28T09:20:17.476-04:002014-05-28T09:20:17.476-04:00Hear Hear! And a million other stories as well. I...Hear Hear! And a million other stories as well. I wrote this some years ago.<br /><br />The Cycle of Negativity<br />Most people with a congenital disability and many of those with an acquired disability (depending on the age they are when they become disabled) are caught in a “cycle of negativity”. For example, from the moment a person with a congenital disability is born, the general reaction to their disability and therefore to themselves is one of negativity. As babies, toddlers and children they will hear people saying things like “what a shame she is like that” or “it’s a pity she survived”. The medical profession will talk about them in front of them about their inability and their deformed bodies or minds. They will be paraded in their underwear and poked, prodded and operated upon. The medicos will be the “experts”, the ones who know how wrong these children are, and they will say so. Often opinions will be expressed as to the capacity of these children to “perform”. Doctors and physios will say “she will never walk, talk, read a book, laugh, respond to you, drive a car, get married, etc”. They will not be expected to achieve anything, they will be teased by other children, stared at in public and avoided by other people. This is the cycle of negativity.<br /><br />This negativity seeps through to the child’s core and leads to them having a very low opinion of themselves. They may see themselves only as useless and a burden.<br /><br />When a person with a disability fails to achieve because of discrimination, lack of opportunity or poverty, no one will recognise that those are the reasons. They will see the failure as an innate part of the person and therefore not anyone else’s responsibility. The failure will confirm the earlier predictions by doctors or parents or friends. They will confirm their own rightness. But for the person with the disability the negativity goes on.<br /><br />This cycle does not ever stop. Even after a person with a disability dies people often say what a blessing it is that they are free. Those people never consider that they all had a hand in building the prison of Negativity.<br /><br />Glenda Lee© 1998 May be used with acknowledgement of author.<br /><br />Gleehttps://www.blogger.com/profile/17671758996746410949noreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-64703497576583248372014-05-27T21:09:40.057-04:002014-05-27T21:09:40.057-04:00Sing it! I *am* a 'gatekeeper', so to spe...Sing it! I *am* a 'gatekeeper', so to speak. I do the AAC evals, but I'm also the therapist. If a kid is using AAC, then they are on my caseload. And I do worry about the same concerns you have. I do my best to think about all the possibilities. And my students continue to teach ME. This year, I had a student show ME which AAC app was best -- he started typing words independently, then mimicing their actions. He showed me that he doesn't just see and retype words, but uses this strategy to learn words. SFY seems to be working for him -- he is learning some icon sequences, but frequently makes use of the type-to-speak option as well. And he continues to amaze us all. <br /><br />I hate to hear stories like yours. I hate to hear about kids who are missing out because someone along the way missed something. I even admitted that *I* was one of those people at an IEP meeting this year -- that I had somehow missed something with a student, and we have since scaled back and are finding enormous success using a couple of different strategies (whew!). <br />But as an SLP I will tell you, it's HARD. It's hard to figure out which kids will really 'get it'. It's hard to focus all my energy on a new strategy for one student when I have 40 others who are also needing AAC support in various ways. It's hard to find the time and the energy and the motivators that will all fit together so that, on the appointed Tuesday at the appointed time, said child will WANT to talk to me, will WANT to use the strategy I am working on (or will clearly show me that I am on the wrong track), and will be able to show me something meaningful in our 20 to 40 minutes together -- and then will be able to do it again next week. It's hard to get teachers and classroom staff to buy into these strategies when I can see that, to them, it's just easier to anticipate the child's wants and needs and meet them right away. <br />I'm not defending L's assessments (she's clearly way off base). I'm just letting you know that some of us out there are trying -- maybe we are still failing, but we're trying. And hopefully the Maya's of the world will be as patient with us as we are trying to be with them, so that we can learn together and create beautiful words.<br /><br />Kimberly Hurley, MA, CCC-SLPAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-17243340066556224502014-05-01T17:48:04.014-04:002014-05-01T17:48:04.014-04:00You are a rock star! Thanks for this!
liz TreeYou are a rock star! Thanks for this!<br />liz TreeAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-77624913186469395112013-07-13T15:21:21.456-04:002013-07-13T15:21:21.456-04:00To Debbie Downer,
I really hope you never have a s...To Debbie Downer,<br />I really hope you never have a special needs child ever. Your sentence- I never understand when people have high (or even moderate) expectations for school systems, regardless of ability of the child, if that makes any sense. No it does not make sense at all. What's more it shows you do not believe in the child. tharahttps://www.blogger.com/profile/06178926420365797564noreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-61045795043361522192013-06-17T13:36:35.722-04:002013-06-17T13:36:35.722-04:00I am so, so happy to find your blog. My daughter S...I am so, so happy to find your blog. My daughter Sophie has bilateral perisylvian Polymicrogyria, which we just found out about (we thought she was autistic for over a year). We are now looking into AAC in earnest. I love all the wonderful resources you put together and I will keep coming back to learn more. <br />As far as the gatekeepers go, I have no words. Maya is a wonderful communicator. I wish you luck with dealing with them. We are still not there yet, Sophie is due to start a special-needs nursery school in sept. (she is 3). Sophie's Trainshttps://www.blogger.com/profile/07774177895296697594noreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-83458544610720216352013-06-14T20:42:30.404-04:002013-06-14T20:42:30.404-04:00So what is the end result here? Will the school u...So what is the end result here? Will the school use the device that Maya is using at home and the one that you know is the best for her, or will she have to learn to use what the school wants to use? <br /><br />I get the feeling that those at the school are more familiar with a certain device and would rather teach all of the children to use it, than to learn what each child uses. Is that the issue? Catherinehttps://www.blogger.com/profile/11149885637140617891noreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-3494776749443299302013-06-07T14:03:24.686-04:002013-06-07T14:03:24.686-04:00Excellent post, amazing writing, inspirational act...Excellent post, amazing writing, inspirational actions! <br /><br />Found you via Love That Max, will be reading tyjhe rest of your posts when my little people (actually not so little anymore) go to bed!<br /><br />Take care<br /><br />LucasAbstract Lucashttps://www.blogger.com/profile/10396367651843421077noreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-73807819320045453162013-06-07T11:02:39.258-04:002013-06-07T11:02:39.258-04:00Thank your for the pep talk, Dana! I, too, am a pa...Thank your for the pep talk, Dana! I, too, am a parent of a child who was quickly donned a TechSpeak, much to my dismay. I was nervous about it, but I have just recently joined the group of parents who have "gone rogue" by getting my son an iPad and an AAC app. I need all the support I can get! <br /><br />I so appreciate your candid descriptions of the NYC DOE evaluation process. It's ridiculous, and they are just as strapped for cash as any other department so they are not to be trusted. Melissa Mhttps://www.blogger.com/profile/09046716949319231916noreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-32512945732073880192013-06-07T10:37:06.867-04:002013-06-07T10:37:06.867-04:00You are amazing Dana, and such an inspiration.
You are amazing Dana, and such an inspiration. <br /><br />Crissynoreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-19336751830326642582013-06-05T23:47:16.228-04:002013-06-05T23:47:16.228-04:00Hi!
I too am an SLP, but I do not work with child...Hi!<br /><br />I too am an SLP, but I do not work with children. I found your blog when searching for more info on DynaVox for one of my adult clients. <br /><br />I found your story very interesting. I feel the SLP evaluating the child really was in error by not including your input in her report. When doing my college externships in early education, we often evaluated the child in their own home, and parent input was integral to the report writing. The SLP may be an "expert" in AAC, but you are your child's expert! <br /><br />I also found it strange the SLP was so concerned with your child using proper grammar over spontaneously communicating thoughts, feelings, and ideas. Based on what I have read about your daughter's communication level, I personally think communication and interaction should be stressed rather than grammar. <br /><br />Is there any way you can request a reevaluation? Perhaps even done by a different SLP and in both school and home? At the very least, could an addendum be added to the evaluation with your input and viewpoints? <br /><br />I haven't read much into your blog, but I hope you are seeking out private speech therapy if you are able! <br /><br />Like I said at the beginning of the comment, I do not work with the pediatric population. However, I hope my comment helps!<br /><br />Best of luck! Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-13611120537160302132013-06-05T17:45:04.227-04:002013-06-05T17:45:04.227-04:00Just so you know, I am an SLP and a "gatekeep...Just so you know, I am an SLP and a "gatekeeper" as you term it. I work for our local school system and while "downer" has a point that budgets are indeed tight, we as SLPs are taught to hold the wellfair of the child as highest concern. Money will find its way to my student if I push for it.<br /><br />I read this post angry and cheering you on all the same. As an SLP I am frustrated that you went through such a hard experience to get your daughter her device. At the same time, I can only hope that I can one day fight tooth and nail alongside a parent in a unified front, just as you have done alone for your daughter.<br /><br />Finally, as an SLP I hope that you view my profession as much more than that of "gatekeeper", for that is only one small part of my job. Please don't think that all "gatekeepers" are closed-minded.<br /><br />Respectfully,<br />LaurenAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-9871621668929752572013-06-05T10:20:09.998-04:002013-06-05T10:20:09.998-04:00Standing ovation!!!Standing ovation!!!Cathy Ballou Mealeyhttps://www.blogger.com/profile/07925815654400078026noreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-88038811815986709062013-06-04T14:04:16.865-04:002013-06-04T14:04:16.865-04:00I currently work as a one-to-one para for a presch...I currently work as a one-to-one para for a preschooler with complex communication needs. I noticed that you said *most* of these gatekeepers are SLPs; I'd love to know what the other ones are. I can't figure out how to train as an AAC specialist without becoming a SLP, silly as that sounds!Katyhttps://www.blogger.com/profile/08973553725831537202noreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-31126322598364376072013-06-04T12:27:02.043-04:002013-06-04T12:27:02.043-04:00I am floored by how similar your recent experience...I am floored by how similar your recent experience is to my own and yet how different. We do not have the fight of assistive tech, Ty is a speaker (sometimes I'd like him to be quiet actually). But we do battle constantly over ability. Sadly, our fight seems to be the opposite direction. Ty is what they like to call a "tweener". He is not "obviously" disabled "enough" to "easily" place him an SLC classroom but he fails horrible in the overwhelming environment of a mainstream classroom. The gatekeeper in our story wants to shove him back to mainstream next year. We've had one pretty good year (not spectacular, but pretty good) in the SLC room...his first good year in 3 and they think he's magically ready to head back to an environment that destroyed him. The assessment that brought this conclusion about was his Intelligence Eligibility testing...an IQ test. The gatekeeper insists that it is standard protocol to drop the lowest 2 scores when there is a large discrepency. Essentially proving her to be right and the rest of us to be wrong and therefore showing he is intellectually "able" to handle the mainstream classes and acdemics. I want my son to be those higher numbers, more than anything! I'm not the type to fight for reducing his intelligence but I am also not going to steal services from him that would help bring those scores up simply to make myself feel better about giving my, obviously, bright, fun, loving little boy a low IQ score. <br />I truly believe that years of focusing on the cost of these children and the services needed to care for their needs in the classrooms have left the gatekeepers blinded to the actual needs of the kids. I had to laugh at you recalling the conversations that most people hear when they even mildly disagree...that exact sentence was said to me...we can do more evaluating at the beginning of the next school year, before the next IEP. What isn't said outloud..."so we can see if we can prove that we are right in a way that you will accept." So more testing, more classroom interruptions, more evaluations all to prove that the low scores in the first round of testing were wrong and the high scores that they wanted to keep, are the right ones. After questioning their motives and requesting information about the types of tests and evaluations they would be doing, along with the results and backup from the original tests...the gatekeeper has suddenly stopped responding to emails. Go figure.<br />My point...the gatekeepers are everywhere, not just in the speech rooms or OT rooms...and they aren't always trying to dumb our kids down...some are simply pushing the kids through the system, regardless of what they learn, the easiest and cheapest way they can. I am always so inspired by you and your fight for Maya. You are such an amazing mom and advocate for her...it is truly no wonder she can accomplish so much on her own...she has a great rolemodel! LTuxhttps://www.blogger.com/profile/00221319500816041397noreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-28248243375843221802013-06-04T11:08:25.126-04:002013-06-04T11:08:25.126-04:00Dana - I always enjoy hearing about your advocacy,...Dana - I always enjoy hearing about your advocacy, and share your struggles and triumphs with many of my friends. We are all fellow travelers on the journey of "Special Needs Parent" and you are a great support and inspiration for many, so I just want to say "thank you."<br /><br />To Debbie Downer - Wow. It is apparent you neither have children old enough for school nor have children with special needs. I hope you don't have to travel that path, but if you do, good luck getting support or services from your private institutions. Yes, we often have to fight to get our kids the support they need, but not always. Yes, general education teachers are under-trained in special education needs, but generally speaking, Public school teachers are have much more education and training than their private school counterparts, who often do not require even a basic credential to teach. As a professional educator AND a parent of three children with rather diverse special needs, I can say your attitude of dismissing an entire system based on . . . well, I'm not sure what the basis for your opinions are . . .but your attitude is part of the problem. J Griffithnoreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-30976578976305155132013-06-04T08:10:40.278-04:002013-06-04T08:10:40.278-04:00I love your stories of advocacy! You are an inspir...I love your stories of advocacy! You are an inspiration.Lizhttps://www.blogger.com/profile/03701889547411279194noreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-8150765762042716502013-06-04T06:05:28.112-04:002013-06-04T06:05:28.112-04:00Thank you so much for writing about this topic. It...Thank you so much for writing about this topic. It is a such a shame that 'professionals' in the position of evaluating AAC needs, would not know the basics. These evaluations must also be taken into the context of how much teaching of robust core word language has been modeled over time. AAC is a new language for many students and exposure over a short period of time is not enough. Your analogy to Picasso was exactly correct for Maya. Additionally, children who have not had the teaching that Maya has had also have the educational right to in-depth teaching of AAC before making decisions. We do not deny books to children who can not read, or pencils to children who can not write-- we teach. Always presume competence and teach, teach, teach.Robinhttps://www.blogger.com/profile/09526332761308935538noreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-63414512125273842322013-06-04T05:46:03.512-04:002013-06-04T05:46:03.512-04:00Love this post! I am so glad you're sharing yo...Love this post! I am so glad you're sharing your story.<br /><br />In response to the public schools comment, there are many wonderful public schools with highly skilled and amazing educators. While I agree that educators may have too many demands placed on them that does not mean they are underqualified or indifferent. :) lisanoreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-30730294153280829982013-06-03T23:20:25.950-04:002013-06-03T23:20:25.950-04:00I don't mean to be a debbie downer, but there ...I don't mean to be a debbie downer, but there is a disconnect for me when people have high expectations for school systems, or any public system for that matter (e.g., government.) They are broke, the educators are stretched thin, maybe under-qualified, maybe they're qualified but just don't care, have limited resources, etc. I just don't believe that they can be all things to all people. And, by all people, I mean those with special needs and those without. We will spend thousands of dollars to put our kids through a private school because we don't believe our public school can educate our kids in the manner in which we want them to be educated. And, we're not moneybags, far from it- no iPhones and fancy cars in this house. I would much rather be a SAHM but I work so they can be educated well. I guess what I am trying to say is that I have very low expectations for educating my kids in a public school system. I always figured that a public school would never align with how I want my kids to be educated, so I always assumed we would pay. I never understand when people have high (or even moderate) expectations for school systems, regardless of the level of ability of the child, if that makes any sense. Just like you, I know how my child will learn best, and it's not by sitting at a desk filling worksheets out all day. I know they are capable of much more. But, I wouldn't expect otherwise from my school system. This doesn't speak to your situation directly, but if you lower your expectations of 'the system' - not your child, then maybe there would be less angst. Hope this is taken with all the respect that's intended. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-88006499297373083732013-06-03T22:41:04.731-04:002013-06-03T22:41:04.731-04:00Thank you so much for writing this. My 7-yr-old da...Thank you so much for writing this. My 7-yr-old daughter has been using AAC for 3 years and our experiences parallel yours. Thank goodness we had an excellent private SLP who helped us find a LAMP-based device (Vantage Lite) for our daughter. This NEVER would have happened through the school. The importance of an independent assessment can't be over emphasized. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-27168912469840634702013-06-03T22:12:54.436-04:002013-06-03T22:12:54.436-04:00*stands applauding* BRAVO mom! Thank you for rais...*stands applauding* BRAVO mom! Thank you for raising MY awareness and potential for what my daughter may be capable of. I have not been able to try AAC for my daughter yet as the gatekeepers don't believe she is ready for anything more complex than a choice of two items. We also don't have the money to purchase an i-pad for ourselves, so I haven't been able to try anything like this. You have given me hope for so much more than just 2 choices! Anonymousnoreply@blogger.com