Just RK

I had a few questions after this post about how our special needs trust went.  So I’ll try to answer them before I forget any longer! (Remember, I’m not a legal ace. This is just my experience or opinion expressed.) How much did you have to pay the attorney to setup the special needs trust? Our whole process cost us $2300.*  The attorney we used, who we highly recommend if you’re anywhere near where we live, allowed us the option of paying over time if we had needed to do so.  The MetLife guys don’t bill at all. There’s no charge for their services.  If you choose to update life insurance or investments through them, then they get a small percentage from that company. *We chose to go the more expensive route.  This cost was for both wills, a family trust as well as a special needs trust.  And Braska’s trust is a “self-standing” trust, which requires a bit more legal setup.  It means that the trust exists right now, instead of becoming an ent...

I’m watching “A Smile as Big as the Moon” on my DVR right now.  I’m about 25 minutes in and so far it’s cool.  And it doesn’t hurt that there’s a particularly handsome young man featured.  I might be biased.  Anyone else see it this week?? 

The precious Little Miss D’s mom recently made reference to the fact that her little one hadn’t ever slept in a crib.  I asked her about it because, well, I’m just nosy that way. Today she replied and explained a bit more…  and it brought up something I’ve been meaning to discuss anyway.  What were the sleeping locations for your kids when they were babies? Same room, different bed? Same bed? Different room altogether? (That one’s my fave!!) Or just wherever the heck they wanted to sleep? So my comment is below… share your experience.  The same for all your kids? Or did your kiddo with DS do anything different in the sleep realm? I find this stuff really interesting. Thanks for explaining!! :o) I can't stand to have the girls in the same room, let alone in my bed.  I'd never get a wink of sleep... every breath, every little sound wakes me.  And that doesn't make for a pleasant mommy the next day! So Braska was in our room for a few w...

These stories come up occasionally… and people seem to have different perspectives on them.  So I thought I’d invite discussion here. Read here and here , as an example at one school.  And then please share your thoughts (politely and respectfully, of course).  (Photo from wfaa.com) I’ll say up front… I think it’s great. I think she’s clearly adored. But not everyone agrees.  What do YOU think?

Today I received an email from a blog friend (who I didn’t recognize immediately…sorry!) asking a question that prompted what I have been meaning to post about for a while.  So I asked permission to share the email and response, removing identifiers, for a couple reasons. 1. I don’t like to rewrite things when I don’t need to.  Who has the time? 2. I know there are SEVERAL of you other blog buddies out there who can relate to this situation, and I’d really love to share your input with her as well. So read along, and please share your thoughts…if you want to do a post of your own, or you already have one that’s relevant, leave a link in the comments. Thanks.  Online support is VITAL, I think. I’d be lost without all the things I’ve learned from the other “DS moms.” (I know…not PC.) ______________________________________________ Her email: I have a 2 1/2 year old who has down syndrome, and an 11 month old who is 'typical'. My question for you is: how do you n...

Even though we are just outside of the Early Intervention system, since Braska turned 3 in November, I still get a lot of contacts and questions about the differences in EI services in different states and even other counties in Missouri.  Ria has been communicating with someone about this and posted their conversation on her blog today.  It sounds like this mom that Ria has been talking to has been put into the new model for EI that some places are transitioning to. She asked for some input into our experiences. In St. Louis County, next door to ours, the First Steps Program has been trying out a new parent-centered team approach with new parents and transferring families.  From what I learned via word of mouth from a few in the administrative side of the system, St. Louis County agreed to be part of a testing or trial program with this new approach.  So far, I’ve not heard many families who are pleased with it, unfortunately. To contrast the two, let me first...

A student working on a project on Down syndrome in college posed a question yesterday on one of the forums I frequent. What would you suggest for someone else who is going to have a baby? Would you suggest that they get the amniocentesis or any blood work directed towards finding any potential problems or was it just easier not to know? And this was my response…  I know this is a controversial topic, but I wanted to share my perspective. This is quite a loaded question, in most circles, but I'll answer as honestly as I can.  I didn't know prenatally and I'm very glad that I didn't.  For me, that is because my marriage was in a very fragile place, and if we'd have known this, I'm sure it would have been over before she even arrived.  I would not abort a baby for any reason, so when I was offered an amnio, there was no reason to do it and take any risk related to it.  Even though we struggled with the first couple weeks of adjusting to all the new...

Beverly Beckham writes for the Boston Globe and has many wonderful articles in her archives.  Sunday, she had another winner, called Seen Through Loving Eyes .   What do you think? Have you had similar experience? Share your thoughts in the comments. _______________________________ My granddaughter Lucy is six years old and is part of a class of people that is quietly being eliminated in my country. She has Down syndrome, a genetic condition that frightens so many women that 92 percent of those who learn they are carrying babies with it choose to abort. Dr. Brian Skotko, a genetics fellow at Children’s Hospital, fears this number will rise. Prenatal tests are invasive, carry a risk to the fetus, and are given in the second trimester, so many women choose not to have them. But a simple new and non-invasive blood test, to be given early in a woman’s pregnancy, is coming, perhaps as early as next year. “As new tests become available, will babies with Down syndrome sl...

If an uncomfortable temperature was inevitable, would you prefer to be too warm or too cool? (This is a previously scheduled post.)

Which do you prefer and why?? Do tell!