The Purpose of this Blog

The goal of this blog is to provide education and bring about higher awareness about Down syndrome. It is to share that life with Down syndrome (DS) is not scary, horrible, or to be feared.

My experience comes from raising my daughter, Nebraska Larae (Braska), born November 2006 with Down syndrome.
The posts on this blog are related in some way to life with DS or disability, and they are reposted here from my other family blogs. There are links to those blogs in the margin on the right side of this blog if you would like to visit them directly.

Thank you for coming by.

Sunday, December 21, 2008

Your opportunity to help NOW

I just found out about a need, and you can help. Yes, even you over there!

The Newbold family is in the Ukraine right now to bring home their little girl with DS. They had a daughter with DS who died from leukemia at age 2. They have since committed to adopt two children, one is home, and now they are there to get little Dasha. I don't know them at all, but they are working through Reece's Rainbow. They have just learned that the amount they were told by the government to have ready is incorrect, and they are short $2000. They also have to come home without their daughter, for the second time, as they can't get the final adoption process done until next month now. So more plane tickets must be purchased. And so their expenses are sudden and significant. I can't imagine how devastated they must be! And how difficult when they thought they would be coming home with their best Christmas present!!

I gave right away. I just had to. This is what our community of blogland is all about, support in whatever form is needed. I ask you to pray, primarily, that they will be able to overcome these obstacles. And I ask unapologetically that you give, even $5.00 will be so helpful. Please bless this family and share your encouragement on their blog.

Thank you.

Monday, December 15, 2008

Great gifts for therapists, Angel Tree 2008

I just went and made my second round of "gift buying" at Reece's Rainbow. We did this last year and are doing it again. The response from our team last year was amazing.

Alot of us buy for Sunday School teachers, school teachers, therapists, daycare providers, etc. It's can be a chore to find the right thing, and if we admit it, most often what we give is either edible (not that it's bad!) or it's a dust collector. The thought is nice, but who really benefits? So we started last year with donating to Reece's Rainbow in honor of our therapists and service coordinator. They were so touched, and a couple of them actually ended up paying it forward and using the idea for some of their gifting as well. I heard from more than one of them that they get so many nice things, but they really don't *need* any of it, so this was a way to be appreciated but have it help someone who really DOES need it. I just gave them Christmas cards with a note inside that we'd made a donation in their honor and stating our appreciation for their work. So simple, but so very well received.

Please check out the adorable faces of kids who are still looking for homes. (Click on the picture below) You can even get an ornament with the child's picture that you've donated toward if you do it today (the 15th).



I give to RR frequently and significantly. I don't say that for any pat on the back, it's not about that. It's about putting our money on what's important. It's about stopping just the talking about how we are all supposed to help others and put those with needs first and actually DOING it.

I hear people talking about if you have "extra" to give to RR or other great causes. I appreciate any plug to help others. But I don't know anyone who thinks they have "extra" money. I know that I don't. We're literally cutting back on everything from what brand of milk we buy, to eliminating some of our "fun stuff" that we don't really need, to keeping our house less toasty warm in order to simply make ends meet each month. We're not doing Christmas gifting with family, (which is more than fine with me since I feel like Christmas gifts should be for kids anyway...all us adult siblings can buy whatever we might want so gifting becomes a hassle and stress to try to find something they haven't already bought for themselves, but I digress) and I don't miss it because to me Christmas is not about the gifts at all. It's about yummy meals and pretty lights and having fun and mostly about celebrating Christ's birth and the true gift that is to all of us.

Regardless of what the bottom line in the checkbook says, I make room for giving. We've never gone without. I don't expect we will. God always blesses us, not necessarily monetarily, of course, but in whatever way, it's more than worth it. It means I don't get the Chinese food every time I want. It means I only have one pair of maternity jeans. It means we eat alot of the same cheap food at home. And I don't mind one bit. These kids don't have any of that, and if they don't find homes, they may not even have their lives. Institutions are no fun, and that may be their future. It is just that simple to me.

So you may not have extra. You may have already done your shopping. But do you have something that could make a difference to a child's entire life, not just their playtime habits for the next few days? Will Braska wish we'd have given her some toy this year or will she benefit more from knowing that her parents value people and especially children who need to be spoken up for?

Thursday, December 11, 2008

Honeymoon is over

Ok, it's not a honeymoon with a new, peaceful, compliant, baby girl. But still. This oh-so-easy little girl who has lived with us for the past 2 years has somehow morphed into a little grouch. And in the process, she has shared this contagion with her mother, who is now becoming one as well.

Is it teeth? Maybe. She's got a runny nose, like crazy. She so rarely has had one that I always try to find a good reason. She is WAY restless. No sitting still to play a while. Fussing when she's corrected. Heck, *needing* to be corrected!

Is it turning 2? I've always said it's not fair that we don't get a delay for 2 since we have all the other delays. She's shown some attitude, but it's pretty manageable prior to this week. Suddenly, she's becoming a bit of a pain in the rear at times. I don't cotton to this, no sir.

Alright, I know there are several of you who are laughing or rolling your eyes at me. If you know Braska personally, you are thinking I'm ridiculous. She's so darn well behaved at all times. She listens and minds. Yeah! That has been the case. I hope we return to that, but for now... this little booger is driving me nuts. Gradual, that would be a nice way to transition. But this all at once change to a stubborn toddler with a snotty nose... no fun.

And yes, I know. My world is soon to be rocked by a kid who cries and throws fits for no reason and actually *requests* to eat. My life as a mother with smooth sailing and happy, contented, quiet days are apparently over. Laugh if you must. Enjoy my coming-of-age. It's ok. I know I've had it good. I know many of you have said repeatedly to "just wait." In the overall scheme of things, this is nothin'. But that doesn't mean it's any fun!

Wednesday, December 10, 2008

IFSP meeting 12/08/08

It's that time again... time to look at what we've accomplished and where we're headed. Or I should say what BRASKA'S accomplished, since I'm not working all that hard, but she IS.

Let me back up for the sake of those who are newer to this fun of acronyms. IFSP is the individualized family service plan that is initially done with a kid enters the EI (Early Intervention) system, normally soon after birth for kids with special needs. Every 6 months, or when a change needs to be made sooner (OR when you change states), it is reviewed and updated. This goes on from birth to the 3rd birthday. In our experience, it has included the service coordinator--who keeps everything in line and organized regarding all our services/therapies needed, the various therapists and service providers, and the parent(s). We basically walk through the various therapy categories relating to the goals that we set 6 months ago, discussing how she has done, what goals she's met, what she needs to work on now, and then specifying what goals to set for this next period.

We moved to Missouri right after Braska was 18 months, so it works out nicely now that her meetings fall close to her birthday and half-birthday. I like things nice and neat like that.

So Monday afternoon was the big day. I don't really fear these meetings like some seem to, but it's not like it's fun either. I like our team, so it's not their fault. It's just sometimes hard to sit down and plot out what you want your kid to accomplish in the next 6 months. And I knew that some goals would not change from the last 6 months, in our case. Thanks to Little Miss Refuse-to-Eat. In attendance were Miss C (best service coordinator ever!), the OT, PT, and ST(By the way, that's occupational, physical, and speech therapy...all the letters...), and the nutritionist. Oh yeah, and I was there too. Of course, they always sit on the floor! Come on, people, why do I have sofas and why did I clear them of laundry and toys?!? Silly girls. They humored me and sat on the sofas. Aren't they nice?

Overall, it went well. I was pleased that everyone seemed to largely be on the same page as far as what we're looking at for the next few months, and they were very cool about the changes I wanted to make. I won't go into great detail. If you're interested in the goals, I can add more on them when I get the official copy of the updated IFSP in a few weeks. But I'll just give you an idea of what we're aiming for and what we changed or tweaked.

Kiddin' Around-- This is a new thing for us. We actually went on Monday morning and observed; well, actually we got to sit in for a bit of class. It's what I call pre-preschool, for kids that are 2 and receive some kind of EI services (if I understand it right), but there are a variety of issues. There were 5 kids there, though the teacher told me they would be getting 4 or 5 more in January when Braska starts. Her buddy, Jack, is one of those...and we're very excited that they're "starting school" together. One of the little girls in the class now has DS, and she's adorable, of course. Quite a live wire too. So there will be at least 3 of 10, and that seems cool to me. Side note: Since we live only blocks from Jack and he's just less than a month older than Braska, I'm hoping that they can go through school together. That would be so cool for a kid of mine, since I never went to the same school for more than 3 years. Anyway, KA is a weekly class, I think for a couple hours, and the teacher, Miss A, seems very nice. Since we'll be adding this weekly, and due to Kinlee's impending arrival, we decided to make some other adjustments to the schedule. Braska will start KA at the beginning of January, and from what we saw for the short while we were there on Monday, I think she's going to like it. She liked sitting in the circle in her chair and singing songs. She picked up on the Hooray! parts like a pro. And the romper room....it's like toddler heaven in the form of a colorful, cool playroom! I feel good about it fitting well into what we're working on with her now, and I like Miss A's approach to the few things we chatted about.

PT--This has been weekly, and we're keeping it that way. Braska has very low muscle tone, even for a kid with DS, so she has to work VERY hard at gross motor skills like crawling, standing, and taking steps. This is probably her most difficult element. She's just getting to where she will cruise a little at the couch, more at the bathtub. She loves to take steps when she's holding our hands, but she's not strong enough to hold it together to stand or step on her own. She'll get there, but we'll keep working hard in the meantime. She tries hard...it just takes so much more effort than it seems like it should for her. Braska likes her PT very much, so that helps alot.

ST--This has been weekly for about the last year or so. As many of you know, this is Braska's strength, in my opinion, and I think the pros would agree. She understands instructions and minds them, for the most part, and she is loving adding more verbal communication every day. Since we know that right now she is very self-motivated, we are going to back off to every other week. This will help me in easing the schedule, and we do not feel it will harm her at all at this point. We'll continue all the work we do at home on these things, which is quite a bit of reading, singing, and practicing words, sounds, and letters. And the ST sessions will focus on labeling (like pointing at a picture of milk when asked which is the milk) and working on two-word combinations. Miss J has some good ideas of what to do for our next steps, so I think Braska will continue to do well, even with the change in schedule.

OT--This has been weekly, and it has varied alot. Our OT in C-U was also kind of our PT for the first year of Braska's life and helped her through sitting, and transitioning to sitting, and working on crawling. Once we came here, our first OT was all about feeding, which was what our goals were for that area. When we changed to our current OT, the approach changed, and it has been more about interacting with food but not so much eating. Braska's never had much focus on fine motor in the "classic" sense, and she's not making any great strides in feeding, so I decided that I wanted to let go of the food element for now and go with more of the fine motor in a play-based environment. Her issues with feeding are less about sensory problems with food and more behavioral. Plainly, she's stubborn!! Well, that might only be 95% of it, but still. The cool thing with scheduling OT is that our OT is based in the same facility location as KA, so she is going to see her for sessions there during KA every other week. I think that's wonderful, and I think Braska will probably respond favorably to that change. It will ease up our schedule too. Big thanks to the OT for doing that!

Nutrition--We've been seeing the nutritionist every other week for a few months, and she works on introducing foods and feeding. Braska cooperates pretty well considering her history, but it's slow going for sure. We're going to keep it the same for now and continue this part of her feeding work. Honestly, we are just not worried about this. She will get it. It may take watching kids at school and her little sister eat and enjoy yummy food to get her to take an interest. And that's fine. We're definitely at a no-stress point with the feeding thing. It's exhausting to make it a big deal. It will come. I've no doubt. In the meantime, it takes all of 5 minutes to feed her and there's no mess. What's to complain about?!?

So there you have it....that's the important part of the meeting. It was interesting to look back over the IFSP from June and see how type A I was, and then to note how nonchalant I am about this stuff now. Life changes, priorities change, and the kid's needs change. We're alot more laid back now, and I like it. Miss C did make mention of the transition meeting in the spring. What?? Do we have to talk about that already?? Actually, I tease her, but I'm not so worried about it. I've got faith in this bunch to get us where we need to go, and I like that we have a few options about frequency for when she starts preschool next fall after the transition on her 3rd birthday. We'll deal with that later... For now, I feel good about the goals we came up with, the plan for the next few months, and Braska's progress.

Oh yeah, and I did let them know that we'd probably be off a few weeks in February when we're trying to figure out how to have 2 girls to deal with. I've gained a bit of wisdom since planning only a few days off when I had Braska! Ha...little did I know...

If you have questions about any of this, feel free to ask!

IFSP fun

I just put up some info on our IFSP meeting from Monday on Braska's blog. It went well. I feel like we're in a good spot.

And let me say, that's no small thing. It's nice to feel like some aspect of life is in good shape and under control. It's not like my life is bad, no way. Just that it's good to be able to check one more thing off. Braska's in good hands, and we have a good plan. I'm thankful for our team, and I appreciate how much they like my girl!

You moms or parents who have the privilege of doing these IFSP/IEP meetings...do you like them, dread them, go with the flow, or have a planned agenda of things to accomplish and change at each one? Apparently, some parents never have much input, just going with whatever the team says. It's good to trust your team, but I'm surprised that the parents wouldn't have things to say in regards to what they want for their child that the therapists may not be privy to.

Just curious...

Wednesday, December 3, 2008

Little call, big letters

This will make more sense to you DS moms and families out there... I apologize for the cryptic nature, but you'll have to trust my reasoning.

Braska had a lab draw on Tuesday last week. The GI called me Wednesday and said there were some significantly elevated levels in the results. Ok fine. Not like we've never had an abnormal lab. But then he used *those* words...the C word and the L word. Said he'd be talking to hem/onc. We needed to go redraw on Friday morning. We didn't freak or anything, but when I hung up the phone, I thought, "Wow, so that's what it's like the first time they mention it."

We took her for her draw again on Friday morning, and we figured everything was fine since we got no call over the weekend. Yesterday I checked in with them. Dr. R confirmed that everything was clear, almost in a "weird way," but they checked with the lab to make sure it was a viable result. All is well. Follow up in 6 months as usual unless there are concerns.

We're thankful every day, and especially so now.

Point taken... good news first next time

Sorry to scare so many of you... I didn't think about anything other than the chronological events of the last post. My bad. There was never any great fear or concern on our part, so I am sorry to cause stress or "freaking out" to any of you! Thank you for all your kind words, though. We love having so many people love our little princess.

Next time I'll start with ALL IS WELL!!