tag:blogger.com,1999:blog-447392662850613354.post235688649967212724..comments2024-02-25T10:24:30.868-05:00Comments on Special needs disability parenting BLOOM: 'The shoes are too big'BLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.comBlogger9125tag:blogger.com,1999:blog-447392662850613354.post-8926925987233954922010-06-03T10:33:39.456-04:002010-06-03T10:33:39.456-04:00I just love how she wrote, straight from the heart...I just love how she wrote, straight from the heart without stopping to think, does this make me look like a bad mom because I'm being too honest...<br /><br /><br /><br />At least Canyon, my son isnt loud. He's actually too quiet which makes me worry about the same things but for other reasons. He could be entertained with movies ALL DAY, but does that make me a bad mom for letting him??? <br /><br /><br /><br />James (his dad) doesnt care for the fact that canyon has a wavier worker. Says its not necessary and his aide at school agrees. Niether of them have to have him all day long. Being with Rusty (his waiver) gives him something to do besides watching a movie or staring out the window talking to himself in his own made up gibberish. He gets to go places,play with other kids (yes they are 3 year olds (Rusty's boys)but thats Canyon mental level anyway) and not be such a loner if only for 2 to 3 hours 3 times a week. No different then a typical kid getting to go to a freinds to play or a typical kid getting to go to mommy's day out on Tues and Thurs at the local church... They don't get it.<br /><br /><br /><br />Gosh, do I have some frustration here? I hope that mom gets some help. Yes, it will get better, but will also lead to other frustrations, worries, concerns, problems, issues...<br /><br /><br /><br />I love Canyon for all he is forever and always. Some parents with kids with DS say they would never change a thing because DS has made their special child who they are, sweet, great personality, loving, forever young at heart...<br /><br /><br /><br />This mom and I will most likely be the frist in line for the DS cure-shot when it comes out. HA!Canyon's mamanoreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-31618294306153403002010-06-03T09:18:44.351-04:002010-06-03T09:18:44.351-04:00Thank you for writing this wonderful post. It is s...Thank you for writing this wonderful post. It is so real, and truthful, we need more of this because it is real life. It is how we feel. I have a 5 year old with Christianson syndrome and a typical 2 year old, I still can't go any where alone with them because they both need one to one right now. The double stroller is my best friend, when they are both strapped into it I can walk and walk and walk, in snow or sun. I have a wonderful respite provider who comes 2 a week to be with the kids for a couple hours so I can have break. I hope you can find a way to give yourself a break too.Ninihttps://www.blogger.com/profile/02318265193434250606noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-1964840065573105292010-06-02T14:22:33.323-04:002010-06-02T14:22:33.323-04:00been there...done that...my son is 11 now. he is ...been there...done that...my son is 11 now. he is still VERY delayed in communication, but it has gotten so much better. you need 'me' time. at least once a week. get your husband, mom, close friend who you can trust, so you can spend time away. you can read a book, take a walk, meet others for lunch, relax in a tub. doesnt have to be fancy...but do it at least a few hours a week to regroup. look into programs in your area for help. respite, wavier, groups for moms with special needs kids. i live in a small community but have found a few things like this available and it helps a lot. no, it's not going to make him normal, but it will make you feel more normal. good luck!mistynoreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-86349780871971143822010-06-02T09:55:32.372-04:002010-06-02T09:55:32.372-04:00Angela's piece really hit me in a profound way...Angela's piece really hit me in a profound way. I think what the others have noted is that push and pull between wanting to be positive about our child's disability -- because we love our child unconditionally -- and sometimes feeling overwhelmed by the challenges and our ability to cope.<br /><br />And the sense that because disability is devalued in our culture, we as parents have to always be "up" and present a wholly positive view, when in fact, life isn't like that. That creates a lot of pressure.<br /><br />I thought all of the feelings Angela expressed were natural and common, but not always spoken about. It also reminded me of a young adult with Down syndrome who told me: "I hate Down syndrome!"<br /><br />I'm grateful that Angela shared this and I can't wait to hear more about Benjamin as he grows.BLOOM - Parenting Kids With Disabilitieshttps://www.blogger.com/profile/06901482901008135659noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-82109057555490356562010-06-02T08:23:21.386-04:002010-06-02T08:23:21.386-04:00It will get better, I promise. My daughter turns ...It will get better, I promise. My daughter turns eighteen this month and I remember feeling all that you wrote. You sound worn out. Can you get help? Respite care?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-29559259092003541712010-05-31T19:40:48.610-04:002010-05-31T19:40:48.610-04:00Oh, thank you for reposting this! I am having a be...Oh, thank you for reposting this! I am having a better day, thankfully, but definitely still feel these feelings a lot. I'm just so glad to know I'm not alone. :)Angelahttps://www.blogger.com/profile/11387011004798871747noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-20116216684778866772010-05-31T19:17:12.809-04:002010-05-31T19:17:12.809-04:00I love this post. Love, love, love it. Sometimes w...I love this post. Love, love, love it. Sometimes when I write something that expresses very honestly how much I just hate the disability we live with, the pain, the uncertainty, the differences, I feel guilty, or defensive, certain that some other parent dealing with a disability will call me a whiner, or a pessimist, or say that I obviously haven't yet figured out how to recognize all the gifts of life with disability--how we learn what's really important and all that. And I just keep saying over and over and over again that we can learn much of value from life with disabilities, but a lot of the time, it just sucks. Thank you so much for your honesty. It has made a difference to me today.<br /><br />Elizabeth - Like you, I'm always on the lookout for "my people," and I seem to find a lot of them here.Ellen Painter Dollarhttps://www.blogger.com/profile/04249909035254149073noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-41719073770996010632010-05-31T17:17:42.591-04:002010-05-31T17:17:42.591-04:00I have a son with ASD and health issues. I soooo c...I have a son with ASD and health issues. I soooo can relate to your feelings. I do no think that there is a Mom or Dad with a special needs child that has not felt this way at one point in our lives. Maybe numerous times.<br />It takes a lot of guts to be able to verbalize these feelings outloud. Society makes us feel like we are bad parents if we are truthful and express such feelings. We are then labled as frozen unloving or God help us, undeserving. <br /><br />When I saw Woody in his big shoes I thought you would be writing about those that need to walk in our shoes. People are so judgemental of us as parents. They do not know our situation when our child is screaming or throwing a massive tantrum. I was so relieved when Joseph was diagnosed with ASD. I could finally tell the little old ladies at church he was not being naughty he had autism. It is sad that I felt that way and that they treated me as they did.<br /><br />I was once told i did not deserve to be a Mom and that if i could not control my child I should not have him out in public. As soon as I got to the car I was physically sick and emotionally trashed. Yet what was worse my then 5 and 11 yr old daughters heard these statements and my reaction. They still talk about it to this day when ever we pass a Walmart.<br />So when you get the chance buy a new pair of shoes.Blair Lynn Sprousehttps://www.blogger.com/profile/08472375270493147788noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-63610969023811141182010-05-31T13:27:33.872-04:002010-05-31T13:27:33.872-04:00The shoes don't fit is such an excellent analo...The shoes don't fit is such an excellent analogy! I think there's an enormous amount of pressure on some parents of children with disabilities to feel the same way as others, those others who have different perspectives and seemingly cheerful, accepting dispositions. I, myself, look toward what I call "my people" -- those who acknowledge the damn hard business of disability, those who have often very dark senses of humor and those who are not afraid to voice great fear and sorrow. I imagine as your son grows older, you will find more like-minded people as well, those with whom you can feel comfortable voicing your fears and grief. For now, thank you for sharing those feelings -- I can so totally relate to them!Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.com