tag:blogger.com,1999:blog-447392662850613354.post9152412376160603283..comments2024-02-25T10:24:30.868-05:00Comments on Special needs disability parenting BLOOM: Why do special-needs parents never feel 'good enough?'BLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-447392662850613354.post-84040462127774101172016-09-15T15:51:24.509-04:002016-09-15T15:51:24.509-04:00Hi Laurie -- thank you for posting.
I think we p...Hi Laurie -- thank you for posting.<br /> <br />I think we parents have a habit of focusing on what we still wish our kids would do, and we forget how far they have come (I know I do this!) Do you have respite workers who are able to take your son out in the community? What does your son enjoy? (besides dancing and treading water!) I know it is really challenging when family members have different ideas about what is best for a child. Are there options for the kind of supportive housing you're looking for? It sounds like you have done the absolute best that you can for your son. I know cannibus has been very helpful for some people with seizures. And I know what it's like to do too much for our kids. Thanks for writing and keep in touch!BLOOM - Parenting Kids With Disabilitieshttps://www.blogger.com/profile/06901482901008135659noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-15257325809132631032016-09-15T02:27:06.865-04:002016-09-15T02:27:06.865-04:00I hang my head in shame and cry every day. My bea...I hang my head in shame and cry every day. My beautiful budda boy, was born 25 years ago with severe brain damage, which causes him to have uncontrollable seizures, which causes severe retardation. Aganist recomendations from the official medical people, I chose to take him home and love him. At 25, he is nonverbal, wears diapers, dances, treads water gives love and two seconds later, kick your ass. He stands a beautiful 5'10", 220 lbs. I'm 5'4" 140 lbs. He hs Many accomplishments. I believe he could be SOO much farther. I believe he has outgrown me. I no longer have the patience, to do this until I die. As parents, we sometimes (ha ha) do to much for our kids. Help To much. I would love to see my guy be able to live independantly with a roomie, and 24 hr staff. Then my guy will shine again! His father blocks me and wont agree. As well as he refuses to administer cannibus for his seizures. My shame comes from not being able to give my son what I believe is the best for him. The tears are for me, knowing I will die caring for my baby who desevers better. Thanks for listening lauriehttps://www.blogger.com/profile/06919828600547983495noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-60092962248335341112016-09-14T15:28:45.366-04:002016-09-14T15:28:45.366-04:00It becomes the responsibility of most children to ...It becomes the responsibility of most children to handle most facets of life once they become adults. For those who have certain disabilities , that cannot happen. So the most important thing s parent can do for such disabled children is to watch out for them and find trustworthy, responsible people to also do so. It's the big fear for such parents because it's so difficult to find anyone to do this. Also it's difficult enough of a thing to look after another person especially when they become adults, and for some, preparation for adulthood and responsibilities does not have positive outcomes. Rebecca yourighttps://www.blogger.com/profile/00280799506632923546noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-67900388192784678252016-09-13T23:17:06.793-04:002016-09-13T23:17:06.793-04:00Gosh, this is SUCH an important topic - thank you ...Gosh, this is SUCH an important topic - thank you for introducing it, Louise.<br /><br />I was a 'barely good enough' mom with my eldest (typically developing) two. I dragged them around with me a lot, didn't helicopter...and as adults, they are independent, strong willed and creative, in spite (?) of my mothering. <br /><br />With Aaron, my son with Down syndrome, I've had to learn how to mother all over again. As nurse researcher Gwen Rempel says, we are 'ordinary people doing extraordinary parenting.' There's microscopes everywhere, and I always painfully feel as if my boy's behaviour reflects on my mothering skills. Is this me with my own shame? Or is it my need for him be the 'best kid with Down syndrome ever' just to prove the world - which is so against him - wrong? Either way, there's so much anxiety, especially in public, at school, with extended family...always second guessing my decisions...<br /><br />We are just all doing the best we can. And we need to be as kind to ourselves as we are to others. But motherhood in general is hard work, and so unsupported. I'm happy for places like BLOOM where we can tell our truths. xo. sue robinshttp://www.suerobins.comnoreply@blogger.com