Tuesday, February 28, 2012

“Merely being human.” Not enough.

We’ve broached a lot of hot topics around here… and all of them have supporters on both sides.  Discussion is part of life.

Please tell me that there can be no one with a heart that thinks that THIS is worthy of support.  Unfathomable, and yet clearly there are some, with an audience, who actually are serious about this query…  “After-birth abortion: why should the baby live?”

Several articles came out in the last day or so on this topic…
Ethicists Argue killing Newborn Babies Should Be Allowed

Ethicists Argue in Favor of “After-Birth Abortions” as Newborns “Are Not Persons” (Mentioning DS specifically)

Ethicists Argue for Post Birth Abortions

One of the things I read referenced this news article out of Canada.  It’s surreal to me.

Thursday, February 23, 2012

DS Moms: Need your school thoughts

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 experience about how your district handles your home school vs. other school in the district placement and how that’s determined… those kinds of things, and anything else you’d like to share.

Thanks.  More on this when I can formulate properly.  Meetings upcoming will hopefully shed more light and help clarify.

Saturday, February 18, 2012

Kinlee: The stats at 3

I took Kinlee to her 3-year check-up on Thursday.  She was not really excited about going.  She doesn’t mind going along when Braska goes, but she is not a fan of being the center of things at the doctor’s office.

She did really well, and we walked out of there with her pediatrician’s favorite description of her, from the first visit we had after she was born.  “Perfect! This pretty girl is perfect!”

First, she stood on the big scale for the first time….
She is 27 lbs. Comes right in at a whopping 12th percentile. (I’ve previously talked about how much stock I put in “typical” growth charts.)

Then it was time for height…
She came in at 36 3/4 inches.  Just about 33rd percentile.

All systems are looking good.  Kinlee got a little upset about getting undressed and having her temperature taken under her arm, of all things…  but Dr. A was good about letting her keep her clothes on until she needed whatever was covered.  (Weird that Kinlee was funny about taking her clothes off…  Miss I Love My Skin generally is happy to run around in her “naked body” with panties only.)

It was kind of surreal to look over the little development sheet they give parents at these routine preventative appointments. 

Does she use 3 to 5 words in a sentence? Um, yeah. Times 5, with verbal variety and proper punctuation.

Does she jump off the floor with both feet? A million times a day. With gusto.

Is she progressing with toilet training? No. Not really progressing. Plateau. She’s kind of had it down for almost a year. Nights and all.

It’s just strange to laugh at the sheet for it’s asking questions she mastered long ago, when I have been often known to laugh at them with Braska because she’s not anywhere near some of the things it’s asking. 

Two kids. So very, VERY different.  In so many ways.  But both pretty awesome.

Oh, and Dr. A asked me how it was that Kinlee was sitting there reading a book while she waited. I told her she was reading at somewhere over a 1st grade level at this point. She didn’t believe it at first.  Then she just asked, “How did you DO that?”  to which I responded, “Without nearly as much effort as you might think.” 

The girl just has it.  She just learns with ease, like lifting a feather. I don’t know that we can take a ton of credit, but yes, we do work on it a lot.  Constantly teaching through each experience during the day. 

It’s nice to take a kid to the doctor and leave with a sticker and “see you in a year.”  She’s a healthy kid.  A smart kid.  A sweet, dramatic, loving kid. 

We’re glad to have her around.

Tuesday, February 14, 2012

Sunday, February 12, 2012

Restore the sparkle

The sermon this morning at church referenced the stages of grief, talking about the “blessed are those who mourn” Beatitude. It was a good sermon.  Once it’s posted on the media page for the church, I’ll link it.  And if you’re around much, you know that’s not a common thing for me.  It just struck me today. 

My life is full of good things.  There are lots of people who have many more reasons to be unhappy at times.  And it’s not like every day is a big sad cloud.  I don’t mean that.  But I’ve had to admit lately that there are definitely things that are weighing on me more than I realized.  Some from long ago, some more recent.

I’ve not experienced a loss like a death. He talked about the various things we grieve, and how it might look in our lives.  And it made sense. I have had major loss, life change, a crushing blow or three or four.  There are things to grieve deeply. Who knew… I’m still bouncing around between anger and depression and shock… but rarely do I land on acceptance.  And I thought I was right at home in acceptance.

The passage that hit me… from Psalm 13 (NLT).  David cries out, wondering where God is, asking why He left him.  And then he says… “Restore the sparkle to my eyes…” 

What a great way to say it. Sparkle. My sparkle is mostly gone. The things that used to be my security, the light when many things were dim, what brightened my day, are often the things that burden me most. The sparkle that’s left is just reflecting off the light in my girls. So thankful for them even when they are being challenging little divas.

But don’t miss the end of that Psalm…
5 But I trust in your unfailing love.
      I will rejoice because you have rescued me.
6 I will sing to the LORD
      because he is good to me.

No matter what.  No matter what, the Lord is good.  He never changes. Things may not look like I would have drawn them out to be, but that does not reflect on God’s goodness. 

So I’ve added that to my prayers.  Restore the sparkle to my eyes… and really, simply asking is the beginning.

Friday, February 10, 2012

Met Life Center for Special Needs Planning

image(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 most important.  But there are many more facets to the process.

We spent time (over several months of this process) thinking about what we want for Braska in the big picture, what the details of that plan looks like, and even what things we can utilize this special needs trust for even while we’re around. 

Because, yes, a special needs trust does not just have to be for after you die.  Did you know that?

There’s a ton of info that’s good to know.  And the fact that these guys are trained and experts and it’s their job to be up to date on all the goings on in the legal side of special needs info…. priceless.

What about all that money I have to have before I can start this process??  I have no money to even dream of leaving inheritance to my kids…  Might that be what you’re thinking?? 

I can’t speak for every single part of the organization, but I can say that we don’t have big $$ to begin setting aside for our little trust-fund-babies-to-be.  The beauty is that the Met Life gang met with us several times, spent hours with us, listening, suggesting, listening a lot more.  There was no money exchanged.  Yes, there are things they will talk about that involve money…. life insurance being one of them.  But with each thing they suggested, they always knew that we would only make the choice we could afford, and our choice was not always their “best” option, in their opinion.  They were still supportive even then.

When it got to the legal side—wills, setting up the family trust (which we also chose to do, encompassing the special needs trust…makes more sense when they explain it), and dealing with guardianship and beneficiary deeds, etc—we did pay the attorney.  And we were ok with that.  He was beyond awesome and if you’re in the StL metro, we would highly recommend that you use him.  All in all, money included, it was not more than we could handle, and it is invaluable to now have in place.

If there is one thing I learned without a shadow of a doubt, it is how dangerous it can be to entrust this type of task to a financial planner or an attorney who does not SPECIALIZE in these things.  This thing, the special needs trust, is it’s own animal, and unless they’ve studied them in detail, I would look elsewhere.

I received this link today to a video piece that Met Life has done for this particular service.  Check it out.  And if you haven’t done it already, no matter WHAT age your child is or how much money you have in the bank, set up an appointment.  Call whoever is close to you and book a time.  It doesn’t cost anything but some time to sit down and learn more about what is available. You will be very glad you have experts on your side, and your family will benefit from these things being handled and settled.

If you’d like to know more specifics or about how some particular area of our process went, just ask, we’re not shy…  I would be happy to share.

For those of you that have gone through the special needs trust process, I’d love to hear your experiences and/or resources you found helpful.

Thursday, February 9, 2012

My 3-year-old big little girl

Someone has a birthday today…

She loves life and the daily doings…

She loves (LOVES) reading…

She loves to take pictures…

She loves to play on the computer and type messages to her daddy…

She loves her sister…a lot…

She loves her parents…

She loves her grandparents…

And she loves to “nose” her daddy, especially early in the morning on her 3rd birthday…

And we love her.  Bunches and bunches.  Brilliant brain, cozy cuddler, diva drama.
All of it.

Happy Birthday, little beauty.

Tuesday, February 7, 2012

To all my running heroes… NDSC Fun Run chance!

My friend, known in the blogosphere as “krlr,” is being a catalyst for good things.  She’s helping to put together a group of people who would like to do a fun run during the NDSC convention weekend in DC.  My guess is that this is going to be a hit!

She explains it way much better, so go read her post.  But if you are into those things, or if you want motivation to BE into those things, get on the list! 

It’s a super cool idea.  Kudos!