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.

Thursday, April 30, 2009

Sequenom test delayed

I just received this from my friend Missy, and I think it's worth sharing!

Many of you know that Sequenom had been developing a new test that they claimed could diagnose a first-trimester unborn baby with Down syndrome with up to 95% accuracy. It was a blood test, so it surely would be used often by women, and the likelihood that abortion rates for babies with DS would increase was a very real concern. The news came out today that the test release is delayed due to “the discovery by company officials of employee mishandling of R&D test data and results.”

I don't know what that means exactly, but I know that I'm pleased. Prenatal testing is a hot issue, and I'm not trying to debate that at this point. Just sharing the latest info on something that many of us have been watching.

Electronic Alphabet, Number, and Color Flashcards

I've been working on a PowerPoint for Braska, kind of like electronic flashcards, since she LOVES the computer so much. It's the alphabet, numbers 1 through 10, and colors. She is really blowing me away. The *first* time I showed it to her she got F - J and O-T right in the alphabet. Like me showing her and not prompting her verbally. Unbelievable. Sesame Street WORKS! Ha! She also did 2 through 10 the same way. I almost fell out of my chair! I'm trying to get video of it for proof. We go over them at least 3 or 4 times a day, and she requests it by coming up and telling me "Numbers!" when she wants to do it again. She just continues to amaze me! Braska just loves it. We're working on her controlling the mouse touch pad. She does well, but she gets distracted and just wants to make the pictures go and not practice her letters and numbers, so for now, it's a joint effort, which is fine with me.

Click here to view the "Flashcards". Note that there is a full-screen option in the lower right corner of the viewer.

Please let me know if there are any problems.

Thursday, April 23, 2009

Easter Dress Value

If you are very observant and have been around for more than a year, you might have noticed that Braska's Easter dress looked familiar. It is the only one she's ever worn in the 3 Easter seasons she's had so far. Grandma C got it for her when she was only a few months old. It's a 3-6 month size. It still makes me giggle to think she can wear it. This year it was a little short, but still plenty big. The little bloomers that came with it are still way too big around the waist. My little skinny minnie!

4/1/07 (Palm Sunday, but she was in the hospital the next week on Easter so it was good that she wore it early that year!) She weighed just under 11 lbs at 4+ months.

3/23/08, 16 months, 15+ lbs

4/12/09, almost 29 months, 21 lbs

You just can't beat that for getting good use out of a dress. Plus Kinlee can wear it sometime very soon, I'm sure. Fun fact: Both Kinlee and Braska wore 3-6 month dresses this year. Amazing!

Just for fun, here's a couple more pics from Easter of my little chicks.

Wednesday, April 22, 2009

Different States Early Intervention

Attention all parents involved in Early Intervention(EI): Help me out a minute, pretty please?

I've talked to a few of you lately about a variety of issues related to EI (AKA, Birth to 3, Babies Can't Wait, First Steps, etc.) and I'm finding that alot of the states are really different in how they handle things. I had no idea that there was such variety in the services and the processes.

So as a point of awareness for those who surf the web for this stuff, and just as a way to share with our fellow parents how things are where we respectively live (Maybe there will be something you didn't know about your own state!), can you take a minute a summarize a few points in a comment here? For the friends out there who have discussed this with me recently, can you still comment here so that we have the best grouping of info? Thanks!!!! If you've done a post on your blog on this, feel free to put the link in a comment too!

1. Some of you have mentioned looking for a preschool for your child who is about to turn 3. How does your city or district or region handle this? Do they assign a school based on your home location or do you have choices? For you that have kids in the 3-6 range, how often do they attend school and how have you felt about it?

We chose to live in the area of our city that we do in order to take part in our current situation. Some districts in our county have their own Early Childhood building that includes the preschoolers transitioning from First Steps. But we chose to be in the district that utilizes a special organization/facility that has 60/40 classes and in-house therapists. The whole place is designed for those with special needs but there are peer models there as well. (That's not the official description, but that's my simple summary.)This is where Braska goes to her pre-preschool currently, and she'll continue at that location, just going more often after she turns 3. We've been very pleased with our therapists from that organization that we've had already through First Steps and Braska really loves going to "school" on Monday mornings. So there's no "choice" for us to make, and I'm curious how that works elsewhere. It seems like several of you bloggers with kiddos this age are looking at preschools, and that's not part of our process, I'd like to know how it works.

2. Does your EI service provide equipment for you? Like walkers, specialized feeding things (Z-vibe, jigglers), or Sure Steps or orthotics? I've heard some even do things like swingsets!

Ours has a system (IL did too) that basically provides what is reasonable and needed when it is written up by the therapist and/or the service coordinator. I don't know the details, but I know it works. We got Braska's Sure Steps through this, and it covered it all. When we were in IL, they offered some of the feeding things, but I was too impatient for the paperwork and waiting for approval, so I just bought what we needed.

3. How does your EI work as far as payment from parents? Is it on a sliding scale based on income? Or is it a free service to everyone regardless of income?

In both MO and IL, it is a sliding scale. In MO, the fees are lower than in IL. I think the highest amount is $100/mo.

4. For those of you with 2-year-olds, have you had opportunities to attend training or information sessions about how to prepare for the transition to an IEP? What are you doing to get ready for this transition?

I've been blessed to know Adrienne, the leader of our local DS group and a friend I knew online before I moved here. I call her the IEP Queen. She is a wealth of information. She's involved with MPACT which gives training sessions for in-depth info on what to expect and how to be the best team member you can be for your child's IEP team. Here's a link to some great resources if you're interested. I'm trying to learn all I can so that I don't just plain accept what's told as fact but can make sure we get what we need and what's best for Braska.

5. And finally, how often do you have therapy and what services does your child get currently?

Braska gets weekly PT, speech is every other week, and OT is every other week and happens while she is at school on Mondays. She also has a nutritionist who visits twice a month and works on feeding and makes sure we're getting her enough food/fluids by mouth or via the G-tube.

Thanks, friends!! I really appreciate your time, and I think it will be very helpful. I am contacted often with some of these questions, so this will be a great resource!

Tuesday, April 21, 2009

Braska: Sliding at the play place

We've been going to the mall alot so I can have fun at the play place. On Sunday I took Daddy to show him where it is and to show him what I can do. Just a few days before that I was there and learned how to slide. So Daddy and I did it a bunch of times! I told Mommy to take a movie so you could see too. We're gonna keep going a lot because it's good practice for me to climb on stuff and crawl around with the other kids!

Like no big deal

I just sat in the kitchen with Braska in her booster chair, tray and bib in place. She ate an entire pudding cup, half chocolate (which she typically hates, but took willingly) and half butterscotch (which she apparently LOVES). She sat there, opened her mouth, even grabbed the spoon several times and fed herself. Then she finished, took almost an ounce from her cut-out cup of warm water (not on purpose, I just didn't notice it was warm--but she loved it) and then she was "aw dunnnn".

In our world, we may just throw a big party for this kind of thing.

Monday, April 20, 2009

A little more about tea

I really do appreciate the responses so far to my pondering and pontificating about the tea party yesterday. Good points have been made, specifically that we never know what a child is dealing with outside of our current situation where we observe them. I do not mean to assume that a child that I deem as misbehaving is being "bad" or that that her parent is lacking proper skills. It is understood that there is always information that I'm not privy to, and that's why I did not think poorly of the moms there based on the daughters' reactions.

There was a point yesterday when Braska started yelling, crying, tears and all. She gets upset when there is a piercing noise, especially a child's scream. One of the little girls, I think she's 5, did not want to sit in a chair when she arrived and became quite agitated to the point of screaming over and over. Braska fell apart, and even though this is a rare happening, it's no fun, as you can imagine. The little girl's mom was obviously trying to calm her daughter, seemed kind of embarrassed, apologizing to me for upsetting Braska, but there was nothing in that situation that could have been helped. I felt bad for her as it was such a small room there was not a way to deal with it discreetly. She got a high chair for her to sit in, and there was not a peep from her the rest of the time.

Braska's reaction is one of those things that I can't control at all. I can't discipline her for it. I can only comfort her and remove her from the triggering event until she's calm. She's upset, not acting out or defying me. And it's that realization that makes me think that some of the other behaviors that were shown might have been in the same category. Reactions to the environment, not so much "bad" behavior.

There was one instance, when one of the older little girls was playing with a display of obviously very fragile tea sets. It made me a bit anxious because her mom was on the other side of the room and not paying attention at all, chatting with some of the ladies. I kept looking back and forth, from the girl to her mom and back to the girl. Like I was telepathically trying to will the mom to notice. Then when another mom, who was talking to someone, got in the way of the little girl, the girl hit the lady several times on the back, then moved around to the side and smacked her on the arm 3 or 4 times. Hard. The sound was almost shocking. I caught myself staring with my jaw a bit slack. I looked over at the girl's mom, and she had not noticed at all. The mom who was on the receiving end of the slaps moved away and let the girl continue to play with the tea sets.

What would you do if you were the lady getting slapped by another mom's daughter? I know it's not like she would discipline her, I don't mean that. Would you want to be told of this if you were the girl's mom? I would. No doubt. That is unacceptable in my book, to slap or hit an adult repeatedly (or at all) and I'd want to know so I could address it and keep a better eye on her at least.

I'm not sure why this little sliver of a Saturday morning is sticking with me so much. But I found myself organizing things to work with Braska on specifically as we move forward the next few months. I figure it can't hurt to work on appropriate social behavior, and I'll just have to have a plan B in place for how to handle the times that the best laid plans don't pan out.

One last thing comes to mind... I know that even before I had Braska, I had very high expectations for how she would act. Before I got that diagnosis minutes after her birth, I knew my little girl would be a well-behaved little girl. There are alot of factors that go into behavior, and I'm well aware that things may change as we encounter different things. But as far as it falls on me to teach her well and guide her as she grows, proper treatment of adults, other kids, and her siblings and parents will be very high on our list of priorities. The same goes for Kinlee. Time will tell how successful I am.

For now, I'm pleased that we're often complimented on how well Braska behaves and adjusts to whatever we're doing. I'm pleased that her personality is so easygoing. She is 2, though, and things may change very soon for us. She's already showing signs of independence and a little disobedience here and there. I get laughed at alot by those of you who interact with us and think I'm way naive about how kids act. Especially Braska's therapists. They think I'm crazy. It's true that I have much to learn, and I think you're probably right that I'm quite blessed to have such a compliant, cooperative child. There's more than one of you who have told me that you hope Kinlee gives us a real taste of reality. Maybe I just need to stop overthinking things and take it as it comes. Ha! There's a thought! I'll give it a try...

Saturday, April 18, 2009

Mother Daughter Tea

St. Louis has a big DS organization, the DSAGSL, but it operates in several area support groups that meet throughout the metro area. Ours out here in St. Charles County has been a great source for community and information through the monthly meetings and other events, like the trainings on how to do an IEP, which I've been attending lately since we're just about to that stage. It's nice that the leader of the StC County group, Adrienne, is also a friend, online first and now IRL. And of course, Julie and I are undoubtedly two of the most important members of the group. I'm just sure of it. Right, Julie?!?

Today the girls and I went to a Mother Daughter Tea that was organized by one of the ladies in our local DS group. It was supposed to be a day for just Braska and I, but M ended up working again. (He's working ALOT of overtime. Great for income, not so much for my sanity.) So Kinlee came along too.

Braska wore one of her new spring outfits, thanks to the clearance rack at Children's Place. Granted, it's a 12-18 month size, and she's 29 months, and it's still too big, but I thought she looked just plain sunny and adorable. She even still fits in her sandals from last year, size 2!

It was at a little tea room that was all decked out in Victorian style, or I think that was the intent, anyway. I'm not up on that period particularly, but it was pretty cute.

There were alot of things I thought about while I was there that I wish I could remember to jot down for later pondering. I've been in this world of Down syndrome for almost 2 1/2 years now, and occasionally it surprises me the way I react to certain things. Today there were 9 or 10 little girls with DS there, ages 2 to 7, I think. It was a very small room, pretty much packed with our group of moms and daughters. There wasn't much room to move around, and very few of the little girls had interest in sitting in a chair. Moms were chasing daughters who tried to leave the room. It seemed there was a constant hum of "come back here," "sit still," "don't touch her," and so on. That's to be expected in a group of little girls, to some extent. But I found myself even more critical of the behavior, somewhere in my mind. I'm not saying that's the right reaction, but it was my reaction.

It made me think, and I realized that I actually hold Braska to a higher standard of behavior than I would most other children. Why is it that I want her to be better behaved, more obedient, more polite, and even more well-dressed and properly "styled"? Wow, that's far more difficult to admit than I thought it might be. Why am I so concerned that she always present herself well, keep her tongue in her mouth--no matter what the reason is for it to be showing, even if it's totally "normal" for the situation and very brief--and respond with a smile when spoken to (which she does not do)? Some of the little girls were better behaved than others. Some seemed to adapt to a new place and limited freedom within it pretty well, but most had a very hard time with the whole situation. It was like I was making mental notes of what I would remember to do or not do as Braska grew into these stages that were represented.

The only thing that makes sense is that I am in some way wanting Braska to defy the "norm" for DS. I want her to be the one who surprises everyone with her good behavior. If she has cute hair, matching bows, current clothes, and can sit still when told, maybe people won't sell her short from the first impression. How twisted is that? Or is it just a slightly bent way of trying to protect her?

This is alot of rambling nonsense now that I glance back over it, but I need to kind of think outloud. I did not think negative things about these moms in relation to their daughters. It wasn't that I was thinking, "Gosh, she obviously doesn't work with her on that," or "She really should have better manners." I mean, come on. The girls were young, most under 5. There aren't alot of 2- to 4-year-old girls that would sit quietly and proper-like in a tea room for 90 minutes, regardless of their chromosome count. Maybe my fantasy world has nothing to do with DS, maybe I just don't know how kids are. But I do know that I felt uncomfortable today at several points... and I wish I could really identify why. I hope it's not that I still have SO far to go in dealing with the reality of what this diagnosis means for our futures. I hope it's not that I've been kidding myself in thinking that I'm all resolved and settled with the whole thing. I'll never ever say that I've got it all figured out, but I did think I was farther along than that. I could be wrong. It happens alot, my being wrong.

Above all, I want to do the best for Braska, and for Kinlee, too. I really DO want them to be held to a higher standard, but yet one that is not unreasonable or overly restrictive. I suppose only time will tell. And I'll take these experiences as learning opportunities, that I may find out more about myself and where I need work. There's nothing at all wrong with cute clothes, pretty hair, and good manners, but I don't want to live in the shallow end. I'm definitely a project in process, but I'll get there.

Friday, April 17, 2009

Healthy babies

Deborah posted yesterday about her feelings regarding the March of Dimes position on "preventing Down syndrome" and other chromosomal issues. She had a good post, points to ponder, so check it out if you haven't seen it.

It reminded me about how I've been noticing this lately.

Julie and I were walking at the mall recently when I noticed these in window cling form on several of the store entrances. I mentioned to her that they strike me almost, I don't know....misleading? That may not be the right word, but here's the issue.

"One day...all babies will be born healthy."

That sounds like a great idea. Of COURSE, we want healthy babies! What's not to like there? I'm wondering, though... What is the definition of healthy? What does a healthy baby look like? Maybe it's no heart defect, no GI issues, no respiratory problems... but there are many kids with DS that do NOT have those issues. So maybe it's related to the cognitive issues, that dreaded "mental retardation" label. But there are such great ranges of abilities in people that might fall into that category. Can we call them "unhealthy"? And what steps are we willing to take to make that statement come to fruition, that day when all babies are "born healthy"? Something to think about...

As Deborah mentions in her post, quoting from their material, they are looking to prevent DS. I don't know that I want to prevent it. I've really been tumbling that around in my head. I can't imagine there is a way to change each of those cells or to keep the trisony from happening at conception, and I'm not sure what it says that we've deemed this community of people expendable enough that we could desire to eliminate them in the future so that we would be supposedly better off.

To be fair, the March of Dimes did have some better-than-usual info regarding DS on their site, and for that I am appreciative.

I get that life is not going to be easy for our kids. I get that sometimes it is hard to watch them go through the medical stuff that can come up. But that is the case no matter what the chromosome count for your child. Nature is not homogeneous. Differences are often good. It seems to be a bit presumptuous for us as humans to start determining who is worthy of life and who is not. There's more to be said there regarding MOD, but we'll leave that for later.

Just food for thought...

Friday, April 3, 2009

Hindsight: Hints of DS, Part 2

If you are interested in Part 1, it's here.

While I was in Dent County last week, in the midst of driving those memory-reviving roads, I passed a place a few times that held another bit of what I consider to be foreshadowing.

Honestly, as I thought about this, I am missing alot of the details about this time in the file drawers of my brain. I don't know why that is. This little snippet of that era is foggy.

What I do remember is for a short while I worked at the adult day care facility of what they call Enrichment Services for the county. I think that I had an aquaintence that worked for the ES, and she had asked if I had time to help them since they were quite shorthanded. I really don't remember exactly where this falls in the timeline of things that happened during my three-year period of living in Dent County. But I believe it was after my stint in Mrs. B's class, and I know it was before the opening of the after-hours clinic.

During most of my time in that town, I had at least two jobs, since most of them were just "as needed." I thought that was really handy, as I could work as much as I wanted to, and I could still take time off without causing anyone to be in a bind. For instance, I was working at the school during the day with my long-term assignments in 7th and 8th grade when I was at the after-hours clinic at night. And when I was doing day-to-day subbing at the school, I had odd days here and there that I could fill with other things. This time at ES was one of those things.

The levels of functionality were varied, not surprisingly. But most of the people could handle their own self-care needs and such. Most of the clients lived with their families who worked during the day, and it was better, or in many cases just more fun, for them to come and hang out with friends instead of being home alone during that time. The days there consisted of playing Bingo, alot of Bingo, with a particular couple of the people. Routines were very, very important, as most all of them were much more comfortable with it that way. Some days there would be friends come and play the piano and sing everything from hymns to show tunes. Those were fun times. Lunchtime was a favorite, and the meals were provided by the center and were considered pretty yummy. Some clients had food issues, as in allergies, and many had environmental meal requirements, like placement of the utensils, colors of the tableware, or what drink they liked best. There were a few of the clients who went to work for a while during the day at a sheltered workshop or nearby business.

I wish now I could remember more about the individuals from a clinical standpoint. I don't recall much that would help me guess at the various diagnoses. But the people there were not scary. They were not useless. They were not disposable. They were people, gathering with friends each day, and enjoying it immensely. I'm sure there were negative experiences at times, but which of us can say we are free of the like at work or school or even at home. Life is not perfect, but these neat people didn't seem to mind at all. They were excited to arrive each day, eager to tell their friends what had happened the evening before, and ready to see their families at the end of the day. Sounds like most of us, doesn't it? Except more of us could probably use an extra dose of the "excited" part at the beginning of our days.

The picture of our intellectually disabled child as an adult is not one that most of us want to dwell on. Some I've met refuse to even discuss it in passing. I admit that it can be a scary prospect, but I don't know what Braska's future holds. I don't know how it is all going to play out with services, facilities, living arrangements, available jobs, etc. But I hope that wherever she finds herself at age 40 or 45, she is as happy with her life and as much a blessing to those around her as these wonderful friends were. For it does not matter much what else is true, as long as she is happy, I'll be pleased as well.

Thursday, April 2, 2009

Braska: Play day at the mall

Today Mommy took us to the mall for a while. Jack and his mommy were there too! We walked around a while and just looked at things, then we looked at some cute clothes and stuff. Well, the mommies looked while me and Jack watched TV in the store. It was a good show!

Then we went to the play place. It's always fun there, and there were alot of other kids there today. I crawled around alot, and I kept trying to go out to the stores by the play place. People kept picking me up when I tried to leave, though, so I couldn't get to them.

I decided to just play inside the play place. There is a neat fish there.

Me and Jack took a ride in the car. I let him drive.

He tried to stand up and tell someone to get out of our way, but I told him he needed to sit by me and drive!

It was alot of fun, and there's lots more pictures, but I have to go to bed, so they will have to wait til later.