tag:blogger.com,1999:blog-447392662850613354.post8770952256186127924..comments2024-02-25T10:24:30.868-05:00Comments on Special needs disability parenting BLOOM: When sleep eludes your childBLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-447392662850613354.post-28910709195557081422013-02-26T13:33:16.160-05:002013-02-26T13:33:16.160-05:00We have the same issues with our almost 8 year old...We have the same issues with our almost 8 year old with special needs. Any time we mess with meds we may be up for days at a time. The Ipad has been a huge help. I can totally relate to travel and company as traveling with him is virtually impossible (even with meds to sleep) as you can never guarantee he will sleep. When people come over, they may be up with him screaming (even is we are up with him) and it isn't always mad yelling just hyperactive, excited, want to be awake yelling! "Mom, go outside" and he will yell it repeatedly until you do it. Even family struggles to understand the sleep issues our son has. Thanks for your advise and thoughts. I've bookmarked your blog!Juliehttp://www.myappykid.comnoreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-75709513463640646542010-08-17T20:13:12.318-04:002010-08-17T20:13:12.318-04:00We're on week 5 of an insomnia stretch with ou...We're on week 5 of an insomnia stretch with our son that has dystonia. He wakes up at 2, goes back to bed around 4:30 or 5 and were all up at 6 for the daycare and 2 working parents run around. Right now he's sleeping half his nights on a good week. I thank the Lord for my husband who takes half the time awake. Other parents try to give tips that worked with their "normal" ( I hate that word ) children, but as you said, they don't get it. Add this on top of meeds, mris, ct scans, blood work and therapy appointments, 12 doctors and 15 therapists and it is one busy life! Bon courage à tous!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-9401083407979772502010-05-22T19:34:41.767-04:002010-05-22T19:34:41.767-04:00Hi Erika -- Of course you can link -- that would b...Hi Erika -- Of course you can link -- that would be wonderful! I think Bethan would be a wonderful contact for you. We would love to run a guest blog about you and Izzy sometime. Hugs xoBLOOM - Parenting Kids With Disabilitieshttps://www.blogger.com/profile/06901482901008135659noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-75947565800293908982010-05-22T15:55:00.857-04:002010-05-22T15:55:00.857-04:00Thank you, Louise, for posting an article about An...Thank you, Louise, for posting an article about Angelman Syndrome. Izzy's erratic sleep pattern is indeed one of the hardest aspects of her syndrome. It makes it difficult to tackle the other issues when you are sleep deprived. Would you mind if I linked to your interview?erikahttps://www.blogger.com/profile/03048369118376287016noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-91677021449806315152010-05-22T15:43:02.058-04:002010-05-22T15:43:02.058-04:00Thanks Elizabeth, Ellen and Kate (great to see you...Thanks Elizabeth, Ellen and Kate (great to see you here again Kate!)<br /><br />I thought the 24 hour playroom was a tremendous idea and I loved what you said, Ellen, about accommodations made at your conference and how they make people feel: accepted and respected and that they belong.<br /><br />I admire Bethan's approach of figuring out what works for her family and sticking with it, even though others may not understand or judge. I also am in awe of how she's able to remain so upbeat on so little sleep! There is obviously a lot of love in this family. I can't wait to hear more about Tecwyn and Tathan and their adventures. Thanks Bethan and Sean for sharing!BLOOM - Parenting Kids With Disabilitieshttps://www.blogger.com/profile/06901482901008135659noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-14417911954280598282010-05-22T08:39:05.686-04:002010-05-22T08:39:05.686-04:00Thanks for this wonderful interview, Louise. I als...Thanks for this wonderful interview, Louise. I also wish the McCutcheons rest!kate hopperhttps://www.blogger.com/profile/08761820572827505993noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-71023272959478641392010-05-22T05:46:05.895-04:002010-05-22T05:46:05.895-04:00I love the idea that at your national conference, ...I love the idea that at your national conference, there is a 24-hour playroom available! One of the most profound, uplifting effects of going to a conference of people affected with a particular disorder is the sense that, finally, you're among people who get it, who share your assumptions and challenges. At conferences for my and my daughter's disorder, they always make sure several of the refreshment tables are lowered, since people with our disorder are often very short-statured and/or use wheelchairs. For the first time in their lives, people feel like their needs are being not just accommodated but given priority. I imagine it feels similar to be at a conference where a 24-hour playroom is available!Ellen Painter Dollarhttps://www.blogger.com/profile/04249909035254149073noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-34916422078739330912010-05-21T17:18:12.777-04:002010-05-21T17:18:12.777-04:00While I don't have a child with Angelman Syndr...While I don't have a child with Angelman Syndrome, I can so relate to this post. My daughter, now fifteen, rarely slept well through the first dozen or so years of her life. My husband and I have managed a very fine sleep routine that is perhaps inappropriate to those who don't know what it's like. Thank you for this clear interview and for sharing your "sleep story" with us! I wish you rest.Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.com