Just RK

Today I sat with Braska's teacher to chat about what's up. To touch base about how things are going. Braska is in a private school. Small class of 8 in a gen ed setting. There is some assistance for those who need it here or there but no special ed, per se. She does sometimes get help from a teacher who has time to lend an extra hand. She's been getting pulled out more frequently lately, according to her daily report sheet. I wondered what that was about,  as it was during reading and the phonics,  two of her strong areas. So today I asked. Her teacher simply stated that she was benefitting from the one on one to keep her challenged and on a good pace of progress. She said the other kids just weren't ready yet for the level Braska was at. Come again? That's right.  My daughter,  with Down syndrome, the only child with this type of disability in her school, is being pulled out of her academic Kindergarten class because she is reading at about a grade level above...

I could write for days.  Lots of info is being taken in and many things are looking different than I thought it would.  We’re at the beginning of this transition process for the fall, and things are already different than we had understood them to be only recently.  It’s not all doom and gloom, but there are some mental adjustments already needing to be made on my part, so input is welcome. So I want to start with this…. if you have a kiddo (DS or other SpEd situation) that is prepping for Kindergarten or has already been through the Kindergarten thing in the last few years, can you share how it looked for you?  Feel free to email if you’d rather… braskasmom atgmaildot com  I’m specifically looking for glimpses at how the day looked…how much time in the reg ed room and for what activities/subjects, what para support was there and if it was one person all day or different throughout, what pull-out/SpEd/resource room time looked like…also anything from your ...

(This is not a paid endorsement. I’m not on commission. It’s just good information to pass along from our personal experience.) If you’re in the StL metro or surrounding areas, this group is doing a free workshop about all this on 2/27 in O’Fallon, MO.  Let me know if you want more details. braskasmom atgmail. com Throughout the Down syndrome community and other groups supporting those with special needs, it is often heard discussed.  Special Needs Planning.  And to some, they immediately want to change the subject.  Talking about what happens to your kids when you die is not really everyone’s favorite subject.  And that’s what people seem to assume this “special needs planning” is all about. And it’s not.  Well, not completely.  It’s much more than that. Yes, there is the discussion of things like who will care for your children if you are not able to, how you want them cared for, what you expect them to have access to and what resources are m...

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?? 

If you’re in the St. Louis area and shop here…. make sure to ask your cashier to “round up” when you check out to donate the change amount here… Thanks!!

Denmark has stated openly that their goal is to be a society without Down syndrome. Here's the whole article if you are so brave. That statement in itself is disturbing. My friend, Michelle, at Big Blueberry Eyes (one of the first blogs I found and followed after Braska was born) posted some comments about this choice, and I'll admit, it's a very difficult post to read. It makes me mad. It makes me a little ill if I think about it too long. But I feel like it's important to realize to what extent the philosophies of disabilities in some countries have twisted. So check it out, knowing it won't give you warm fuzzies, but with the intent of knowing where "the others" stand, and how far they are willing to go. Then tell someone... be sure that those who might be around you and think like this out of ignorance have the opportunity to learn the truth about what life with DS means. And My Heart Cries Lord bless our efforts to share with the w...

(Biloba, that is. Liquid gold. Brain power.) If you heard the Beverly Hillbillies theme and rhythm in your head as you were reading that, you’re as twisted as I am. Welcome. The point of this was supposed to be telling you about a great sale on Ginkgo Biloba at Puritan’s Pride .  So there ya go.  There’s an awesome sale. Buy 1 get 1. Or even better buy 2 get 3.  Yeah. That’s my kinda deal.  Just ordered me a sweet fivesome a couple days ago. Today’s the last day of this current sale!! But I figure I can’t really just throw out that there’s a sale, that I ordered 5 bottles, and then not tell you why we would stock up like that.  That’s just not fair, now is it. Back in the fall, I once again looked at the option of ginkgo.  I’ve heard parents talk about it, and I know some adults with no particular disability or diagnosis who love it for it’s help with maintaining a sharp memory.  I found several bloggy friends who use it with their kids, most...

I have had the privilege of getting to know some super nifty blogger buddies “in real life” (IRL if you’re a fan of the acronyms, which I am) versus just communicating through blogs and comments shared.  I could list a whole bunch of them, but for today’s purposes, I’ll highlight one of my faves. Most of you are very familiar with Courtney, Justin, LC, and Jace and their ever-entertaining stories written in the dry, witty style that Courtney employs with ease. (And for what it’s worth, it’s not a show for the blog. That’s how she talks. It’s great.) I’ve been blessed to be able to get to know them better since they come over here to St. Louis Children’s for a chunk of specialists for the squibs.  We’ve done dinners out, visits at our house, and I’ve been able to provide some tiny distraction from the fun of hospital stays when they’ve been here for a few days at a time.  Trust me, I am always the one who walks away more excited and blessed by the interaction.  ...

Tomorrow, 9/30, ColdStone Creamery is offering a FREE 3 oz portion of a super yummy treat from 5-8pm.  More details here …. (thanks Hip2Save !) Be sure to take a dollar or two with you and help the Make-A-Wish Foundation while you’re there… we know so many families who have had great experiences with Make-A-Wish.  And who doesn’t love ColdStone anyway?!? Enjoy!  And leave me a note tomorrow if you go and share what you thought of the treat!

Today is Eunice Kennedy Shriver Day (EKS Day).  My friend Jen tagged me to help spread the word about this day celebrating Mrs. Shriver and her contribution to the world through Special Olympics and so many other avenues. I’m in a conference this weekend but I wanted to share a couple links for you to check out… ~~Jen has a post with more info and some great quotes here . ~~More good stuff from Michelle’s post at Big Blueberry Eyes . ~~ SpecialOlympics.org has a wonderful spread for EKS Day with many neat links and articles.

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...

You may have heard by now that Mrs. Eunice Kennedy Shriver , founder of the Special Olympics, died today at age 88.  There are many great things about her and the work she accomplished on behalf of the those with physical and intellectual disabilities.  But one of my favorite things is that she displayed a complete example of defending the vulnerable, not only those with disabilities, but also the unborn. From the USA Today article , Unlike other members of her Democratic clan, she remained opposed to legalized abortion and was a longtime supporter of the group Feminists for Life . From her family’s statement today, Inspired by her love of God, her devotion to her family, and her relentless belief in the dignity and worth of every human life , she worked without ceasing - searching, pushing, demanding, hoping for change. (emphasis mine) She will most definitely be missed.

I don't often like to reply to comments in another post, but sometimes it seems the way to go. No, I'm not going to rant, so if you're looking for drama, sorry to disappoint. I'm in a bit of rush...ya know, new baby, toddler, and all...so this will be relatively short. I'm not all that sensitive about this kind of thing--questionable jokes, using the wrong words, or words in the "wrong" order--related to the disability community. I'm in the minority in many circles that I travel in due to this. I understand the outrage at the "r-word" and I know the PC way to say things, but I admit I don't really react with the fervor that many do. That's just the honest truth. So this is not me flipping out about his comment about the Special Olympics. It's more about what it may indicate. And one thing I do agree with many of my friends and acquaintances in the world of developmental disabilities... it's not just a joke. And if it h...

This may be a good reason to go back to the policy of not appearing on this kind of show as a sitting President. Braska may "just" be in the Special Olympics some day (which is FINE by me), but she can say "gaffe" already. Summary (In case you couldn't hear it) BO: "I bowled a 129" JL: "That's very good." BO:" It's like Special Olympics or something." Wow.