tag:blogger.com,1999:blog-447392662850613354.post2357444272112831857..comments2024-02-25T10:24:30.868-05:00Comments on Special needs disability parenting BLOOM: Let's rethink 'normal' in children's rehabBLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.comBlogger9125tag:blogger.com,1999:blog-447392662850613354.post-33057208488010755782013-01-06T19:22:15.034-05:002013-01-06T19:22:15.034-05:00Really interesting post and the responses highligh...Really interesting post and the responses highlight to me how differently we all think about the things that are important to us and our children. <br />My son, for example, has significant challenges because of his cerebral palsy, and he WANTS to walk, despite using what many would call an 'abnormal' pattern of movement and not being very efficient at it either! At age 7, his physiotherapists have never encouraged him to walk, yet he has always wanted to do it, and LOVES to do it (with our physical support or with a walker). It isn't functional, we are told, but whilst my sons few slow and very excited steps won't have an impact on our very dysfunctional family life :), they do give him a hard to beat feeling of independence that he may not experience as he gets older. I think independence is underrated, but like function, the criteria for achieving is set at very different levels depending on the individuals abilities and aspirations. We live in the UK by the way, but I don't really think that matters in this discussion. I would like to think that as a mum, I make decisions about my sons' therapies (when they are available!) based on how well I know him: does it actually reduce his quality of life or is he excercising his ever improving 'making choices' skills by telling me he would rather be doing something else?? As I would with his brother who doesn't have disabilities, I make decisions because he is 7 years old and can't make them for himself (or can but he would choose eating chips and chocolate and watching TV all day)and as a parent, I feel I am best placed to make decisions for him that may affect his future - independence, quality of life and general happiness. <br />I really think it is important that the discussion is kept central to the child and the family, because what I have heard from the other posts is that some people, who possibly have more potential or ability walking than my son does, don't necessarily want walking to be a focus of therapy, but may prefer a power wheelchair for speed and efficiency to keep up with their lifestyle. However, someone like my son, whose potential for independent walking is minimal, and his ability in walking is 'poor', benefits hugely from the enjoyment he gets from it. If resources are an issue, then as long as it doesn't put a person at risk, should we not direct therapies to those who want them, and/or who are in a position to decide whether they will improve their lives, rather than continuing to strive for 'normal' when a) no-one seems to be able to define it and b), if they can define it, they don't necessarily want/need it?? :) Anonymoushttps://www.blogger.com/profile/02469259436380109446noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-26824767368337743362012-12-28T13:35:29.506-05:002012-12-28T13:35:29.506-05:00This is a very well written piece that should make...This is a very well written piece that should make all pediatric therapists stop and think. As a pediatric physical therapist I like to focus on achieving functional skills rather than "normalizing" movement. I do try to include the child and of course the parents on each goal set to ensure that the child is motivated to achieve the functional goal. <br /><br />I do think that standing and walking at a young age(not necessarily independent walking with or without an assistive device) is a crucial part of cognitive and social human development in addition to motor skill development. <br /><br />I agree 100% that when walking is not a functional means of mobility one should explore manual or motorized wheelchairs. <br /><br />I think the idea of different motor development charts for different diagnosis is an excellent idea although very hard to accomplish when we look at cerebral palsy which can present at so many varying degrees. There are charts like this available for children with Down Syndrome but most therapists do not use them. This most likely has to do with getting therapy costs covered - it is hard to get therapy covered if you do not score below a certain level. <br /><br />I believe that as pediatric therapists we have to start this important discussion as to what are we trying to accomplish long term. With budgets getting tighter and tighter we need more research to indicate that we are making a difference and to some degree is it emotionally and socially beneficial for the child to receive years of therapy services? Your Therapy Source Inchttps://www.blogger.com/profile/06145002317929388735noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-85847015755133047622012-12-19T02:29:20.868-05:002012-12-19T02:29:20.868-05:00I feel my role as a parent is to see what's go...I feel my role as a parent is to see what's good, great even in my children and do whatever I can to support those gifts. And bring them forward so others can appreciate them to.<br /><br />Secondly, I try to make sure my kids do at least one thing each day that they absolutely love.<br /><br />My son loves the water. I've always wanted him to learn to swim. But the number one priority is to preserve his enjoyment of the water. Even if he can't swim in the end, he can at least enjoy soaking in a hot tub at the end of the day.<br /><br />What is life without joy?<br /><br />I've had many comments on what great personalities my kids have. I don't think they would be as kind and empathetic if I was pushing them all the time.Unknownhttps://www.blogger.com/profile/00804249577741963149noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-33335946585387467412012-12-12T15:17:35.656-05:002012-12-12T15:17:35.656-05:00This post was originally posted on 3:37 pm on Mond...This post was originally posted on 3:37 pm on Monday, December 10th. Edited for spelling <br />Do we ever stop, and question our values'? Or should we?<br /><br />Thank You Dr. Gibson for such an affluent post for the mind.<br /><br />As a person with CP, I grew up receiving therapeutic interventions at 8 month of age. If there is anything that my parents and I will agree on is the reality that I missed out on a lot of "life" our debate frequently lands on the definition of "best interest". Although, I am not yet a parent myself, perhaps a moderately sufficient statement can be found in the product description on amazon for Andrew Solomon's newest novel: Far From the Tree: Parents, Children and the Search for Identity. In the description it states: " All parenting turns on a crucial question: to what extent parents should accept their children for who they are and to what extent they should help them become their best selves?”<br /><br />While, I am not even going to attempt to answer that question!! What I am going pose is: aren’t the concepts of health and success conceive by our society? If so, I feel strongly that in order to shift paradigm we must become ever more cognizant of the fact that a child is developing regardless if they are receiving therapeutic interventions or not; therefore, a child's sense of self is shape while they are spending their time at physio. So is not whether is "right" or "wrong" is much more intricate… I feel is a matter of value entangled with personal beliefs’ and social pressures under societal influence. We all put our time, effort and money into people and things we value, and in return we hope to receive affirmation by the community at large (society). The question I always like to ask is why. I understand that it’s only natural for parents to want “the best” for their children, and there aren’t many arguments against it. Yet, what does “best” mean? What would it look like? As Dr. Gibson pointed out:<br /><br />"World Health Organization’s International Classification of Functioning, Disability and Health puts the rehab focus on social participation rather than fixing bodies, and acknowledges that function results from many influences.<br /><br />But the politics of disability are still largely absent in rehab talk". <br /><br />Why? How come? <br /><br />The World Health Organization is a "branch" of the United Nations Economic and Social Council in short is part of the UN which is no doubt an organization which, with an effort in attempt to present " global societal" values. So, what are truly our values? And do our decisions, regulation, and actions fully reflect, and align our values as a society?<br /><br />As we continue to evolve, I hope it won't just be "a grind of the fittest" but also, a process of defining and fostering our humanity as well.<br /><br />I want to conclude with a statement made by the current United States Secretary of States, and former First Lady, Hillary Rodham Clinton. <br /><br />"Woman's rights are human rights"<br /><br />Thus, I strongly feel: disability rights are also human rights. <br />Crystal Chinnoreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-70750335931838427272012-12-12T14:54:33.880-05:002012-12-12T14:54:33.880-05:00This comment has been removed by a blog administrator.Crystal Chinnoreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-45129360941200107462012-12-11T17:10:38.694-05:002012-12-11T17:10:38.694-05:00Thank you Dr. Gibson. I really appreciate your pos...Thank you Dr. Gibson. I really appreciate your post. <br /><br />I have sensed from some in the rehab/medical community that resources are better expended on a disabled child who can be rehabilitated to be almost "normal" than on a very disabled child who might make great personal strides but will never come close to having the abilities of other children.<br /><br />It is great to encourage discussion in this area. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-77167996634225524692012-12-11T10:00:11.377-05:002012-12-11T10:00:11.377-05:00Hi -- It's great to see all the comments here....Hi -- It's great to see all the comments here. <br /><br />I wondered why we wouldn't create new benchmarks based on what could be expected with a certain type/degree of disability. So instead of comparing against "normal" why not have a different development chart (e.g. if my child has a certain type/degree of CP, we would expect their development to proceed in this way). <br /><br />I'm thinking about the same thing with growth charts. Why do we use growth charts based on typical kids for children with genetic conditions and even dwarfism!<br /><br />That's right, my son was diagnosed with "failure to thrive" as a toddler even though his body was in proportion and he wasn't skinny, and his condition is associated with short stature/dwarfism. Instead of assuming that this was natural for him given his condition, we were told to monitor and record everything that passed his lips, put him on a high fat diet of cream and butter, and generally become obsessed with his weight and growth -- to the point he was put on a g-tube and a trial of growth-hormone therapy (none of which worked!)<br /><br />What is the point of charting a child with a rare genetic condition and dwarfism on typical growth charts? Of course they're going to be off the map.<br /><br />Why aren't we tailoring benchmarks based on a child's condition???<br /><br />Thanks Barb! BLOOM - Parenting Kids With Disabilitieshttps://www.blogger.com/profile/06901482901008135659noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-75460897312249365802012-12-10T23:24:59.705-05:002012-12-10T23:24:59.705-05:00Thank you for a thoughtful perspective. I have alw...Thank you for a thoughtful perspective. I have always thought that an emphasis on walking for so many people was strange. Getting from point A to point B, yes, obviously. But I would prefer to do that quickly, painlessly and whenever I felt like moving in space. Wouldn't most rational people (if they really thought about) prefer a power chair if walking was simply inefficient and unpleasant? Independence is overrated at best and a cruel fiction at its worst (for people with severe disabilities). As the writer indicates, often aspiring to independence at all costs simply leads to isolation. The Caregivers' Living Roomhttps://www.blogger.com/profile/10920119448415733545noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-84028469129655348762012-12-10T15:51:14.807-05:002012-12-10T15:51:14.807-05:00This is a great post. I never thought about it fro...This is a great post. I never thought about it from a professional's point of view. As a parent - and this may sound odd - it makes me happy that they struggle with issues that are so similar to what we deal with on a regular basis.<br /><br />Syona is young so our key indicator is really just her. That's not to say she loves all the hard work she does, but she has a very distinct way of telling us when she really is done and isn't enjoying the process anymore. At this point, my key driver is inspiring her to be HER best self (whatever that looks like) so I take my cues from her.<br /><br />It will be interesting to see how this changes/is impacted as she gets older and she begins to identify with certain traits, abilities or groups.<br /><br />Anchel (@AnchelK)http://www.todaysparent.com/specialneedsnoreply@blogger.com