tag:blogger.com,1999:blog-4997156159638877174.post4668995502192448700..comments2023-09-26T00:25:51.171-07:00Comments on Little Wonders: Crossroads kind of suck ...Heatherhttp://www.blogger.com/profile/04209967185741239050noreply@blogger.comBlogger38125tag:blogger.com,1999:blog-4997156159638877174.post-63068463603665318742011-10-06T18:07:33.357-07:002011-10-06T18:07:33.357-07:00I'm glad Elizabeth said poo first. I hesitated...I'm glad Elizabeth said poo first. I hesitated over my response for the same reason she gave. That said, my older sister, Michelle has profound mr, her cognitive capacity is about 6 mos. She live at home till she was 5. Then I was born and she was home for another year. My mom had to make an awful choice. No dr would rx pt. She was 5 and didn't walk. I'm grateful to her institution for this, they did give her pt. She was 7 when she first walked. Not walking at 5 does not mean it isn't going to happen. I don't know if it will, but it also isn't a reason to not work towards it. She can have 2 goals to work for. <br />Abby,s pt sucked. He told me she wouldn't crawl and told the other therapists on her team this. What it really meant was he wasn't working towards it. Her failure to get there on his timeline disappointed him. It pissed me off. That was about him, not her. He was burnt out and it was affecting his ability to be effective with her. We now have a new pt. <br /><br />If that pt can't see how to get zoey there, I would suggest getting or trying a second opinion. If it's not hurting her to try, don't let their inability hurt you too.Colehttp://www.thetaooftulips.wordpress.comnoreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-52004210715040492282011-10-01T07:24:26.182-07:002011-10-01T07:24:26.182-07:00Hi,
I found your blog by accident, have you ever ...Hi,<br /><br />I found your blog by accident, have you ever heard of Patterning? its also known as the dolman-delcato method? google it, it may well be useful for Zoey. I live in england and work with children with Autism, professionals should never give up on a child, we need to set the bar high for our special children to help them meet their potential.<br /><br />much love<br />AnnaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-24192843839694148782011-09-26T12:48:08.816-07:002011-09-26T12:48:08.816-07:00Everyone has said it all. All I want to add is p...Everyone has said it all. All I want to add is prayer and lots of hugs. Zoey is going to do what Zoey is going to do just has she has for the 4 1/2 years. Don't let anyone take that away from you. Hugs and loveScrappy quilterhttps://www.blogger.com/profile/08643346408388508283noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-7561884375395514782011-09-24T05:55:24.781-07:002011-09-24T05:55:24.781-07:00I just stumbled upon your blog through a friend...I just stumbled upon your blog through a friend's blog (Secret Pepper Person). I am a speech therapist and I agree with many of the other comments that maybe it is time to look for a new therapist. I think Collen's comment are dead on. I just wanted to offer a different perspective. Sometimes I work with children who are very delayed with their speech. Often when I suggest to parents about working with alternative communication devices, I am met with great resistance. Parents are always afraid this will keep the child from talking. I assure them we will still work on trying to develop verbal communication but that each child has a right to communicate his or hers wants, needs, and feelings today. Not months from now or years but today. When parents see how quickly an alternative device can begin to allow their child to express themselves they are thrilled! I have thrown the idea of "window of opportunity" out the window. I was taught that in college but the children in my life did not take that course. My nephew with CP started talking at 11! Way past when the "window" should have been closed and boarded up. I am sharing all this so that you might be able to look at the use of a wheelchair differently. If the chair allows her to be more independent and mobile today isn't that wonderful!!! Maybe with creative positioning Zoey can use her vision to the best of her ability. Never give up on greater goals but give her the chance to fly today even if it involves lots of circles. Would Zoey feel independent and proud of herself? If the answer is yes then maybe it is worth considering. I hope my thoughts help and in no way offend you. I am sure you always have your daughter's best interest at heart when you make decisions on her behalf. God bless. <br />Mrs. MAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-74869644981954661362011-09-23T18:36:17.057-07:002011-09-23T18:36:17.057-07:00Heather your PT is taking the easy way out and the...Heather your PT is taking the easy way out and the fact that she doesn't believe in Zoey is completely unacceptable. Since when do we limit a child based on the need to write goals???? You're stuck with what you get at the school, but check into a PT with you medical insurance. You need a PT who can think outside the box and who is eternally optimistic. Zoey is just way too amazing to limit in any way.Bea Braunhttps://www.blogger.com/profile/02731571117429173461noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-71661162017017468772011-09-23T18:23:50.658-07:002011-09-23T18:23:50.658-07:00I'm not sure how I arrived here, but I'm g...I'm not sure how I arrived here, but I'm glad I did. I can identify with your post on your beautiful girl, only for us it is speech. I have felt the same things in reference to Lillian's speech therapist. I cried as I read your words about your heart breaking. I wish there were words I could say...thank you for sharing your heart.Michellehttps://www.blogger.com/profile/12151314481973711574noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-26159280945712384092011-09-23T04:58:00.065-07:002011-09-23T04:58:00.065-07:00The Teenager should not walk because of her substa...The Teenager should not walk because of her substantial hypoplasia of the cerebellum and CP. She began walking at 5. She began walking well at 6 or 7. She now runs and rides an adaptive bike. She began writing at 13. I've learned from the Teenager that we really can't set limits on the human spirit. Stroke or no stroke. CP or no CP. Her IQ is 46 yet she reads on a 3rd grade level. Ten years in book one of Hooked On Phonics paid off. Now she reads for her own enjoyment. Never say never. I've seen too many miracles with my kids and my clients to not be a believer in the human spirit and the mama lions that nurture the little ones...Unrealistic. Who gives a crap? And who is to say what the future holds? No one knows that. Only our Creator and he has good and perfect plans for Zoe...and The Teenager....and the children he loves so dearly.SECRET PEPPER PERSON:https://www.blogger.com/profile/06434583043459305729noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-44025527667587956622011-09-19T18:44:52.635-07:002011-09-19T18:44:52.635-07:00I love you! I have no wise words or advice to give...I love you! I have no wise words or advice to give,just know I love you and your sweet Zoey.Cherylhttps://www.blogger.com/profile/01013919287284128734noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-37232040582907748782011-09-19T18:20:05.994-07:002011-09-19T18:20:05.994-07:00As others have said, it is not about LIMITS. It is...As others have said, it is not about LIMITS. It is about what she can and will one day do. As parents, we have to and want to put our trust in the professionals that surround us, but we have to try to manage that fine line of trusting them but also making sure they are fully supporting our children by endlessly encouraging and BELIEVING in them. Trust your mommy instincts. You will always know what is best and your little sweetheart will be just fine!Drianoreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-12310122019109358722011-09-18T23:18:14.497-07:002011-09-18T23:18:14.497-07:00Fight back, Friend. Zoey will walk. If she has h...Fight back, Friend. Zoey will walk. If she has half the perseverance of her mama, she WILL walk.Kisses For Noahhttps://www.blogger.com/profile/13093512713874459548noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-11923053675027358702011-09-18T16:18:21.852-07:002011-09-18T16:18:21.852-07:00Have faith - everything so far has been on Zoey...Have faith - everything so far has been on Zoey's timeline - not on a medical timeline. She has made such wonderful strides in her progress so far - with everything she's been through, look how far she has come!. She just might surprise you again one of these days! Have faith.<br /><br />Robyn from Otisco Lake.<br /><br />PS - Mark I am sooo sorry we didn't get to see you and the boys when you were here. A week is just tooooo short a time!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-64372526290104163022011-09-18T14:47:28.014-07:002011-09-18T14:47:28.014-07:00OK, totally unsolicited, but get a new therapist. ...OK, totally unsolicited, but get a new therapist. Preferably one who is blissfully Pollyanna-ish, and thinks there is no limit to what Zoey can do. I don't know Zoey personally, but I see a girl who has always surprised people. So why would anyone imagine she could predict a single thing about her or about what God intends to do with her? And long ago I grew tired of the way medical-type people worry about giving parents "false hope," so they proceed to speak as if there is no hope, and right around our kids! Screw her. (In a completely nice way, of course.) :)conniehttps://www.blogger.com/profile/08675708151247378703noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-41034308279383712232011-09-18T12:25:30.401-07:002011-09-18T12:25:30.401-07:00Zoey is an amazing person.
I believe that if she w...Zoey is an amazing person.<br />I believe that if she wanted to walk and she would.<br /> <br />Statistics are only numbers.<br /><br />She may appear to be going in circles, but what if she is just having fun?<br /><br />And imagine how many hurdles she has already cleared in such a short time.<br /><br />You are doing a fantastic job with her.<br />Please don't get discouraged and keep up the great work! We are hoping and praying for the best.Peter Olsonhttps://www.blogger.com/profile/14527197022630274057noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-69576161500110255152011-09-18T09:00:24.907-07:002011-09-18T09:00:24.907-07:00I am so sorry. Hugs and tears from here. Deep do...I am so sorry. Hugs and tears from here. Deep down do you think she is right? I keep firing people, doctors mostly, who don't believe in my Bell. I keep taking things into my own hands and saying, Yes, she will. She may never breathe without a machine. BUT by golly she is going to walk, because I believe she can and she wants to. Listen to your heart. You know her so much better than anyone with any degree. If the answer is no, we will all cry with you for that loss, but we will all love your strong and amazing girl the same, without or without a power chair. Sending love and a million hugs.Shelly Turpinhttps://www.blogger.com/profile/09076447364643644461noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-43262671784629483072011-09-18T07:59:49.987-07:002011-09-18T07:59:49.987-07:00I read this post this morning. And then, while dri...I read this post this morning. And then, while driving to Cologne with the Husband, I was thinking about it again and again. Now, here`s my output:<br />I don`t believe the PT. I´ve heard so many dr. opinions and everything, and they weren´t right all the time. Sometimes totally not expected things happened - some good, some bad. They just don`t know what is going to happen. They just tell their opinion - but that must not be what it turns out to be in the long run. Not more, not less. Zoey will find her way, and I don`t know why - but I do see her walk. Someday. She is just taking her own time. Love to you, my friend.Claudiahttps://www.blogger.com/profile/16954761345803576676noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-3618180773160972712011-09-17T19:40:06.013-07:002011-09-17T19:40:06.013-07:00I am not a medical expert, but know a little about...I am not a medical expert, but know a little about brain anatomy from my psychology degree. A right hemisphere injury would explain why Zoey has fairly good receptive language skills, but struggles with simple motor tasks such as learning to operate a power chair. Right hemisphere dysfunction often results in visual/spatial and perceptual deficits. In addition to Asperger's Syndrome, I have Non-verbal learning disability and although my challeges are different than Zoey's, many motor tasks had to be verbalized/broken down into steps for me. For instance, I had to be told to swing my arms when running or to alternate feet when skipping. I wonder if Zoey going in circles has to do with difficulty orientating herself in space. On a much smaller scale, I struggle with some of those issues. I am unable to drive a car and I have trouble crossing intersections. I also get lost really eaisly, even in familiar places if it is near dusk. In order to teach someone with peceptual difficulties to operate a moving object other than their own body, it will have to be broken into very small steps and each step practiced one at a time. The same will have to be done with any motor tasks she learns (e.g. in a few years if she is ready to walk, learning to hold a pencil etc.). Physically moving her body in the positions (e.g. directing her hand on the joystick) may also help some. Using her chair, using her gait trainer, and hopefully eventually walking, will all be good oppertunities for Zoey to learn navigational skills which are so hard for those with right hemisphere disabilities. Finally, don't let experts use spatial/perceptual abilities as a measure of Zoey's global intelligence. As a child with a brain injury (even without DS), her abilities will be greatly scattered with some close to normal and others severely delayed. Full scale IQs mean very little when there is such discrepancy between abilities (better to look at individual areas).Anonymoushttps://www.blogger.com/profile/14299493731311058061noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-91442646294173729752011-09-17T19:11:41.596-07:002011-09-17T19:11:41.596-07:00Oh come on. Seriously, what a way to earn a living...Oh come on. Seriously, what a way to earn a living. Telling others their four year old will never walk so they can write a reachable goal. Really? Is that how the game is being played these days. Sad commentary. Fire the therapist and move on to one with a can-do attitude. (after a self indulging pity party which you so deserve after being subjected to that bs)Joycehttps://www.blogger.com/profile/08466914387696533499noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-91715784384969062992011-09-17T05:10:04.715-07:002011-09-17T05:10:04.715-07:00I know we have talked about this and it still brea...I know we have talked about this and it still breaks my heart. Just so you know, I worked with a child with an unspecified disability that is 5 and 1/2 and is in a chair. She can barely sit up and last week she decided that she would start bearing weight and is standing with support!!! We will never give up on our Zoey Grace!Cammie Heflinhttps://www.blogger.com/profile/07843057037279743749noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-67885370208464705672011-09-16T18:07:51.542-07:002011-09-16T18:07:51.542-07:00Uggghh! I'm so sorry that you are going throu...Uggghh! I'm so sorry that you are going through this. I am definitely no expert AT ALL, but it seems to me that for a child with CP _and_ DS the "won't likely ever walk" predictor age would be later than for kids with just CP. For goodness sake, I know kids with DS who don't have CP who didn't walk until almost 5.<br /><br />Praying for your decisions.Justinehttps://www.blogger.com/profile/04628086750403852099noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-60024205842415422322011-09-16T17:58:51.783-07:002011-09-16T17:58:51.783-07:00Oh sweet friend ... I can feel the pain in this po...Oh sweet friend ... I can feel the pain in this post and it hits me straight in the heart. Emily is almost 8, and nowhere near walking. She can't even bear her own weight on her feet anymore, when you hold her up. I was always the told the same statistic about walking by 5. BUT - I know two kids who walked way later. One girl in Emily's class at school didn't take her own steps until she was 12!! So it CAN happen. Do not let this PT tell you the future. No one can do that! I agree with the others that you need a new set of PT eyes working with her.ANewKindOfPerfecthttps://www.blogger.com/profile/11978293330074662766noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-86676344408377450192011-09-16T17:03:44.717-07:002011-09-16T17:03:44.717-07:00Heather - I hope you received my call today on you...Heather - I hope you received my call today on your cell. But following all these comments from your whole family of supporters one line came through to me - Do not give up on Zoey's abilities, set up an appointment with your wonderful children's physician you so strongly relie on and definitely request ANOTHER PHYSICAL THERAPIST. THIS ONE WAS WAY OUT OF LINE.. (Yes, I'm shouting)! sorry :) <br /><br />Aunt Bluebelle/Loraine<br /><br />PS: Colleen's words were right on..<br />Wouldn't you just love to have her in your medical group for Zoey Grace awesome!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-83619659705887280382011-09-16T16:33:33.093-07:002011-09-16T16:33:33.093-07:00Don't even get me started about that PT! I can...Don't even get me started about that PT! I can't believe the nerve of this woman! Does she realize that Zoey has only been getting PT for a year or two now?!?!? I mean, if they had started her in PT since her first diagnosis, maybe, just maybe I'd be a little discouraged. But come on, she's only been getting it for a short while! And the 5 yr mark. Zoey is her own individual. Why should she have to fit into their timeline?!?! I mean, how many other kids do they know that have been though all of the things Zoey has?? NONE, I'm sure. Don't be discouraged. Go out and get your girl a new PT that actually believes in her and kick this one to the curb!Reagan Leighhttps://www.blogger.com/profile/10276933188608521229noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-67269674458271776992011-09-16T15:43:16.431-07:002011-09-16T15:43:16.431-07:00I jusr cant and wont accept it. I know it could be...I jusr cant and wont accept it. I know it could be a possibility but I just dont want to hear it. For you or Miss Zoey. I know that the gap seems to be widening, I too have these spurts of anger because our little one wasnt even given the chances she needed until we came along. She is so delayed and doesnt fit into the DS mold. I wish there was something we could all say or do to fix it or make it feel better. Keep dreaming Heather! Hugs.Annahttps://www.blogger.com/profile/05452607521750848540noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-59340802325733878602011-09-16T14:48:54.179-07:002011-09-16T14:48:54.179-07:00I know your PT is a professional, but I'm sorr...I know your PT is a professional, but I'm sorry - NO ONE can accurately say what our kids will and won't be able to do!!! And this PT person needs to be replaced with someone who doesn't think in limits, who instead, works tirelessly to find and try new ideas to help Zoey progress! Princess Zoey is amazing and she will continue to amaze and inspire all of us! <br />Sending much love, <br />Karen<br />Logan UTSalinas familyhttps://www.blogger.com/profile/07559230479268867574noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-84436269399756477182011-09-16T08:49:42.376-07:002011-09-16T08:49:42.376-07:00As a pediatric nurse practitioner, I am confused b...As a pediatric nurse practitioner, I am confused by the fact that one member of the health care team has independently made a decision that should typically be made after consultation with Zoey's whole team. Zoey's PT's expertise is not in evaluating the cognitive potential of a child with Zoey's diagnoses. You have always indicated that your pediatrician has a great deal of experience with special needs kids and is smart enough not to fall into the notoriously dangerous territory of predicting outcomes in children. Perhaps you could make an appointment with him and bring up all of your very legitimate concerns should you follow Zoey's PT's advice and perhaps he will document his opinion in a letter should it differ from your PT's (which may help her with the more objective problems she faces in writing goals for the "state"). My nephew just started Med school -they are being trained to work in groups (including on tests) to find the answers to questions, as that has been shown to be the most effective way to come up with the "best" answer. This crossroad merits a group consensus of all the experts who know and care about Zoey. And should they happen to disagree, tell them to get their "letter writing pens ready" which may help your PT with her state issue.colleenhttps://www.blogger.com/profile/13329067973795030839noreply@blogger.com