tag:blogger.com,1999:blog-447392662850613354.post2682759034705299694..comments2024-02-25T10:24:30.868-05:00Comments on Special needs disability parenting BLOOM: Raising a disabled child in an abled world takes a tollBLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.comBlogger12125tag:blogger.com,1999:blog-447392662850613354.post-91071922486760091902018-02-27T19:03:31.424-05:002018-02-27T19:03:31.424-05:00Dancing around the house while you do chores is a ...Dancing around the house while you do chores is a good way to have fun and get work done. You can't be sad and dance at the same time. I lost a few pounds doing that for about 30 min a day, and it made me happier Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-70794567325454784352018-02-15T22:20:40.819-05:002018-02-15T22:20:40.819-05:00The article's content is spot on and aligns wi...The article's content is spot on and aligns with my own experience, as well as my research with other families. It's ABLEISM that is the problem. Ableism, like racism, has infiltrated every aspect of our lives and has made all of us believe that it is "just the way it is". No. We need to dismantle the ableist attitudes that keep devaluing our children's lives (if we are parents of someone with a disability) and your lives (if you are people who have disabilities). Ableism has trained society at large to think that an able body or mind is a BETTER than a disabled body or mind and because of this assumed superiority, the world has been structured accordingly. Does this sound like racism and white supremacy? It should, because they are linked. These are insidious power structures and have been and will continue to be very dangerous to real human lives. We need to keep fighting, it is exhausting and demoralizing and terrifying sometimes but so important that we keep it up in whatever ways we can. For my part, in part because my child's disability is relatively mild, and I have reaped the benefits of many unearned privileges by virtue of where I grew up and my race, I have chosen to both study and teach on the subject of inclusion and ableism. I wish you all the best and hope I can contribute in some meaningful way to the improvement of all of our and our children's lives. <br />Tesshttps://www.blogger.com/profile/14587892869675354455noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-19027169960638956212018-02-12T16:07:19.071-05:002018-02-12T16:07:19.071-05:00Exercise, making time to just stop therapy and med...Exercise, making time to just stop therapy and medical stuff and enjoy being a family for half hour, sleeping tablets once every couple months to get a night’s sleep and blogging about our sons journey. Nothing can ever stop the paralysing fear when I hear an ambulance siren (17 ambulances and critical care every time in the last 9 months), sleep deprivation is the worst form of torture and learning about how hard I have to fight every day just to get access to provisions that should be automatic for our child is exhausting but seeing a milestone met no matter how delayed makes it worthwhile. Having videos of my son laughing on my phone to cheer me up when the guilt at working (a necessity to pay for therapy) is essential. Having a safe place to vent when everyone calls you strong when inside all you want to do is go to sleep and not wake up or not wake up anymore in this nightmare but knowing you have to go on because your child needs you. Trying every day to push away the fear that he will die this week, this month, this year, not understanding how we can do that year on year - using exercise to run off the anger and fear. Angelmumhttps://m.facebook.com/emsjg/noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-32221751347104018602018-02-12T10:58:11.304-05:002018-02-12T10:58:11.304-05:00I am a pediatric nurse who works with children wit...I am a pediatric nurse who works with children with complex needs and their families. People often ask me if it is hard to work with these kids or if it is too sad. What I can tell you from the bottom of my heart, is that I feel nothing but privilege to work with them. The children are amazingly resilient in so many ways and I have seen the unconditional love and devotion of so many parents and grandparents.I have also witnessed their fatigue and pain and stress. It is true that all families need support from their communities, respite for their children (which means neighbours or other family members may need to take training) and kindness towards the caregivers when they're having a bad day and the stress has made them a little less tolerant of others. Caregivers need care and fun to replenish themselves to take care of these children.My own child struggles with ADHD and we know first hand how advocating and dealing with other parents about friendships or behaviour can be isolating,painful<br /> and exhausting for us. I also know that my experience does not begin to approach the experience of these families.Nursing, as well as other disciplines and community, need to be trained in and acknowledge that indeed some of these families are experiencing PTSD.This is an an area of research that needs to be followed up. Masters anyone?Lisahttps://www.blogger.com/profile/11805013126440259517noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-33170308541448808032018-02-04T19:27:33.813-05:002018-02-04T19:27:33.813-05:00I do the same. I have 2 days a week with no kids a...I do the same. I have 2 days a week with no kids at home, so after I drop them off, I head to the gym and I go again on the weekends when my husband is around. Otherwise, on the other days, I get up early and go for a 3-5km brisk walk. It doesn't fix anything, but definitely helps.Meghannoreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-56577390824046691232018-02-01T15:10:08.284-05:002018-02-01T15:10:08.284-05:00Raising a disabled child is a lonely road to trave...Raising a disabled child is a lonely road to travel. I have three children and all three of them have been medically complex. My middle son has a genetic disorder that is destroying his arteries (Vascular Ehlers Danlos Syndrome) and every time he starts coughing up blood and having chest pain, I wonder how much longer he can keep strong before his body can’t keep going. My youngest son has a different range of problems, but is wheelchair bound. It’s kept him from feeling connected to his peers and even teachers sometimes forget that he is 13 and full of beauty and wonder. I have worked for years getting the right advocates and services in place, but I still get down. Sometimes it’s lonely and tiring and so hard to find support. I have VEDS like my older son and have had to undergo massive surgeries to stay alive. Sometimes I wonder what will happen to my disabled children when my own body gives out? I guess it’s late at night when the worst thoughts come out. Bonniehttps://www.blogger.com/profile/11930356714356268411noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-2625012419473890712018-02-01T12:20:10.916-05:002018-02-01T12:20:10.916-05:00I think more of the world needs to know about PAND...I think more of the world needs to know about PANDAS and PANS. When the link between infections/inflammation and and mental illness symptoms is missed in our children it sets them up for a lifetime of inadequate treatment and a very difficult childhood, often leading to the added stress of living with an illness other people do not understand. Strep can affect any child and families, our medical professionals and our communities need to be more aware. This condition affects the whole family. To learn more or to help create more awareness in Ontario visit www.pandaspansontario.org or find the organization on Facebook and Twitter.Kerryhttps://www.blogger.com/profile/12357786126976075936noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-7846864071549870602018-02-01T08:22:19.665-05:002018-02-01T08:22:19.665-05:00I would love to expand www.amothersrest.org to sup...I would love to expand www.amothersrest.org to support you! <br />Andrea Robertshttps://www.blogger.com/profile/01717408861899440069noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-64416569531965492152018-02-01T00:59:39.115-05:002018-02-01T00:59:39.115-05:00I do stress out in thinking about my son's fut...I do stress out in thinking about my son's future, but I just prepare myself for the worst and hope for the best. I also keep myself busy, try to have a "normal life"... But my son's therapy, appointments, etc...Are my priority. I've also taken up exercising and it is helping. Staying positive has really helped me. Anonymoushttps://www.blogger.com/profile/14060595552284249743noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-84133159306144756952018-01-31T17:26:33.029-05:002018-01-31T17:26:33.029-05:00It is terribly difficult worrying about the future...It is terribly difficult worrying about the future. I try to work towards it slowly and day by day. Doing something for yourself, no matter how small, helps me to keep moving forward. Andrea Gillannoreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-50539315441390738722018-01-31T15:33:57.281-05:002018-01-31T15:33:57.281-05:00Hi Julie -- Thanks for posting. What kind of exerc...Hi Julie -- Thanks for posting. What kind of exercise do you do? Wondering how you fit it into your busy day. Thanks for sharing!BLOOM - Parenting Kids With Disabilitieshttps://www.blogger.com/profile/06901482901008135659noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-56525157968858063992018-01-31T15:02:08.117-05:002018-01-31T15:02:08.117-05:00The one thing that has truly saved me and has allo...The one thing that has truly saved me and has allowed me to get off medication is exercising EVERY.SINGLE.DAY....I always tell people that I exercise as much for my head as for the rest of my body....I can't stress enough how important it is for your peace of mind!Julie Goniknoreply@blogger.com