Tuesday, October 12, 2010

Prenatal Testing & Research Funding for Down Syndrome

Warning! Stepping on my soapbox...

I've touched on both of these subjects in the past, here is what I said when we were asked about prenatal testing during my pregnancy with Eleanor and here is where I talked about how I felt about the March of Dimes' funding research. Of course, those subjects come up again and again.

This week, I read an article posted on my favorite mothering website/magazine about new prenatal testing soon to be available that is supposed to be definitive testing via blood sample, as opposed to the current blood screenings. Whenever I read of these advancements in early prenatal detection, the underlying purpose always seems to scream out at me: FIND OUT IF YOUR BABY IS DEFECTIVE EARLY ENOUGH TO GET RID OF IT BEFORE YOU GET TOO ATTACHED! They like to sugar-coat it and say, "we want mothers to have time to "prepare" for the birth of their special needs child." B period S period

If they want mothers to prepare, than they should give them immediate resources that are balanced, up-to-date and accurate. You know, like the information required thanks to the Kennedy-Brownback law. Sadly, the medical field just absolutely does not do this. They immediately ASSume that prenatal testing= terminate if there are problems and then try again. So they offer up the termination choice first and if asked to offer other options, most just fumble around and claim not to know how to provide resources. It's not that hard! Google: down syndrome support and they can print off a dozen reliable sources immediately to take to the appointment when they deliver the news to expecting parents. Time and time again, support groups have contacted medical care providers and offered them brochures, books, phone numbers, etc for free to pass on to new parents. Yet time and time again, parents that eventually find the support say, "My doctor didn't tell me there were support groups. My doctor didn't tell me anything about life with Down syndrome. My doctor recommended termination. My doctor scheduled the abortion for me before he delivered the news."

And, thus, roughly 90% of prenatally diagnosed pregnancies with Down syndrome in in termination.

The majority of current research marked "for Down syndrome" is directed at early detection. Ways to "catch it" as soon as possible so the parents can end the pregnancy. See, if that termination rate gets high enough, then Down syndrome will be "cured". The reality is, there is not and never will be a cure for Down syndrome. Science can't genetically alter fetuses after conception.

Instead, we need to make sure that the research money raised or nationally budgeted by the government for Down syndrome is instead used to focus on improving the well-being of life WITH Down syndrome. Look at ways to improve heart defects, Alzheimer's, pulmonary disease, cancers. These are all condition that affect the life of people with Down syndrome as well as others. Put the money into early education, provide therapy for more instead of trimming the budgets to once a month. Send teachers to inclusion seminars. Help parents find and fund the resources they need to adapt their homes for their children.

Stop focusing on erasing Down syndrome from society. As I read on Facebook several times this week:
Oh my gosh... There is a cure for Down syndrome, its called ACCEPTANCE! Who knew...

Monday, October 11, 2010

We love Playgroup!

It's hard to imagine that our little playgroup is still going strong after three years! Some of the original kids have grown up and gone on to school, so they only attend in the summer. Several of us have had new babies, so there are new young ones to grow up in the group. I can honestly say that I look forward to going every time we meet, I get so much out of our time together that the hour and a half just speeds by.

Our last playdate was at the local zoo. The number of families that attend varies each time, but it's always a good mix and Ella is so excited to see her little friends.

All the kiddos together.

Little farm girl!

This female turkey gave them a talkin' to when they walked near her man. :)

Sunday, October 10, 2010

Buddy Walk Photos and a little Video!

We always call it the "Buddy Carry" and this year Sean got a little walking done, a little riding in the jogger, and a little carrying.


Hey! Would you look at that, a picture of me! :)


The boys geared up with horns to start the walk.


Playing the games is definitely their favorite part of the Buddy Walk. They love getting the little prizes.

Aidan had quite a nice shot here- you can just catch the football exiting the tire on the other side. Sean played this game twice and tossed it right in, too.


Gotta love the putt-putt! Both boys got it in the hole on the first try. Ella gave it a go with Daddy's help.




All three had fun riding the cool trikes.




Sean and Aidan both got in the firetruck.




Ella was too distracted by the balloon arch to notice the firemen.


They played several others games as well and climbed in the inflatables that were set up. The "walking a mile" part was a bit of a disaster, per usual, so we took a short cut half way. The lunch lines were overwhelming, so we just had a drink, played a couple more games, then went to lunch at Carlos O'Kelly's.

The weather was perfect yet again, it's such a pretty place to have the event. Each year it gets bigger and bigger, which is nice to see the huge support for the DSSW. Unfortunately, it also makes it harder each year to go there to connect with other families. You basically just have to focus only on your group to keep the little ones safe and don't have much of a chance to mingle.

I guess we just need to get to more of the monthly meetings to see people and try to hit the smaller, fun gatherings they organize. It was cool to see some of my blogging friends, even if it was just a wave from a distance!

Saturday, October 9, 2010

It's Buddy Walk Day!

Gorgeous weather predicted and a large turnout planned today for the Down Syndrome Society of Wichita's annual Buddy Walk.

Due to other major events Doug and I have on our calendar this month, we weren't sure if we'd be able to go this year. So for the first time, we did not do any fund raising or gather up a team. Other than making the 150 Buddy Walk medals we provide the walk each year, we actually got to take it easy this year. I hope we have a nice relaxing day and get to catch up with our friends from around the state.

See you there, fellow walkers!

Friday, October 8, 2010

Preparing for Kindergarten Transition: All Systems Go!



Time for a long overdue post and it's a long one! The resolution of my months (okay, I admit it, years) of worrying about how Sean would adjust to attending grade school. I had so many fears about how he would be accepted, whether or not he'd make friends, how'd he manage the long school day, would he eat there, will he continue to grow and learn new skills, would he be able to manage his school uniform, etc.

I am so, so, so entirely pleased to say.....




it's all good.

Never underestimate our children!! (That goes for me, too, sometimes mom and dad need reminders as well.)

Let's see, let me tell ya about how Sean's kindergarten experience has been going.

1. Communications with his teachers has gone pretty well. Since we live close to school, Sean does not ride the bus. Therefore, Doug or I see his teachers twice a day and can exchange verbal updates. He has two folders in his backpack, one from the mainstream class and one from the resource room class. Almost everyday I get papers from them. Projects he's working on, class schedules, notes about how his day went.

So far we've only had one disagreement about their procedures. Since all of the children wear uniforms, it can be hard to quickly recognize kids that might need extra help on the playground. We were asked at the beginning of the year if it would be okay if Sean wore a bright orange safety vest during recess until the various recess helpers had time to get to know the kids. They have used them in the past as a way of quickly keeping an eye on kids that might wander off. My initial reaction was "Absolutely not!" I saw it as a way to separate him from his peers and felt it was unnecessary. Then Doug and talked it over and thought, "Well, we want to make sure he's safe there. Wearing the vest would make it easier for them to watch him." We went back & forth on it over a weekend. Finally we concluded a compromise, no vest until Sean shows that he is attempting to leave school grounds and merits the extra "flag" so to speak. The school was fine with our decision and it doesn't seem to be a concern anymore.

Sean had a few bumps on the playground already this year, but they were not due to lack of attention from the recess teachers or his paras. Just normal schoolyard accidents- he took a soccer ball in the head & bent a pair of glasses. He skinned his knee one day and was furious that they put a band aid on him. (He hates stickers or band aids.)

2. Eating at school has gone exceptionally well. The first few weeks I packed his Goodbyn lunchbox with the slim variety of table foods he likes to eat. Currently that list is: plain sliced wheat bread, hot dog buns with ketchup (gross, I know!), fresh oranges cut into bite size pieces without rind, whole banana, applesauce, occasionally yogurt, sometimes blueberries, carrots or fresh broccoli with ranch dressing to dip in, animal crackers, and shredded lettuce salad with ranch dressing. If the school had a meal with french fries or tator tots, we'd let him buy a hot lunch that day so he could eat those. The boy goes to town on tots & fries.

I put money on his lunch account for him to buy a white milk for lunch every day. After the first month's funds were used up, the lunchroom clerk suggested that since he qualified for reduced lunches that I just let him buy a hot lunch every day and then send a couple things in his backpack to go along with what he might eat there. She said that he'd been doing really well trying some of the hot lunches and thought he might try more if he could get it every day. So we've been giving that a go. I'm never entirely sure what all he eats each day, rarely does anything come back in the his backpack.

They have an afternoon snack in the classroom every day and his teacher says he's been doing fabulous with that. She said she started a game with him, "one for you, one for me" and they eat a snack together until Sean has five bites of whatever they have that day. Awesome!

When he comes home, he is immediately hungry and eats a big after school snack, dinner and sometimes a bedtime snack. I think he's weight is being maintained, but haven't had a chance to get him weighed since school started.

3. Adjusting to the school uniform has also been surprisingly not a problem. He willingly wears his uniform every day. He can't tuck his own shirt in yet, but is capable of pulling his pants up and down & using his belt. We have a Myself Belt for him and it works just great for him. We bought Sketchers Z-Strap shoes for him because they are popular in his age group, easy for him to fasten, and fit with his shoe inserts.

We only had one potty accident at school and it was totally our fault. He has a camel bladder and will hold it all night and all morning for a very long time until he absolutely must go immediately and don't stand in his way. We have to prompt him to go in the morning before school otherwise he would gladly hold it until later (were talking no peeing for a good 13-14 hrs.) The morning he had an accident, we'd forgotten to prompt him to potty before school, and when he got there he was suppose to met with his new physical therapist for the first time. She was ready and waiting on him, so he didn't have time to settle in the class. She took him to the gym to work and apparently he told her he needed to potty then couldn't hold it long enough to get to the bathroom. I got a call to bring in spare shoes for him because every thing was soaked. (I had given them spare clothes at the beginning of the year.)

Now we are adamant about making sure one of us has seen him potty before we leave the house.

4. Sean's adjusted to the longer school day fairly well. He is there from 8:10 till 3:30. They only had a 15 min rest period in the school day, but recently cut it as the kids were doing well without it.

His teacher keeps a fairly tight schedule in the class and gave us a list of how the day is spent. 4 hours of his day is spent with the mainstream class and 3 hours is spent in the resource room. Sean's time in the resource room is spent focusing on the academics he needs to work on.

5. A wonderful part of his resource room education is a once a week trip to Reins of Hope for hippotherapy! We are so glad he gets to have this experience again. He did hippotherapy for 6 months when he was almost 2 1/2 until he turned 3. When he started hippotherapy he couldn't walk independently. When he finished it, he could easily walk from the car to the fence gate and into the arena! It is so beneficial for building core muscle strength. I need to ask his teacher if I can sneak out there to see him and take some photos.

6. And, lastly, just a brief recap of Sean's first Parent-Teacher Meeting as a kindergartner. I spoke with both teachers at once and they unanimously stated that they were extremely pleased with how he is doing. They feel he handles the transitions of the day very well and is very willing to do whatever task they ask of him. He's making friends and bonding well with his classmates.

The only concern that came up in my meetings was one regarding his older brother. Aidan has always felt the personal need to take on responsibility for his brother and sister when he is around them. He constantly checks on them and keeps tabs on what they are doing, he tries to direct their behaviors. Well, Sean and Aidan share some recess time together after lunch and Aidan was stepping right in to watch over Sean. Granted, he plays with him and invites his friend to play with Sean as well, but primarily he was telling the adults that he was in charge of Sean. It was obvious to the teachers that Aidan had a lot of anxiety about Sean's well-being. They wanted to reassure him that Sean was okay and that they were keeping an eye on him so Aidan should just enjoy his recess with his friends. Apparently, Aidan was also encouraging Sean to play superheros together, complete with pretend karate chopping each other. Big no-no at school.

Our decision was to encourage Aidan to relax about Sean, trust that the teachers care about him and will watch out for him. We told him that Sean is going to school to learn how to make friends with other kids, too, and that he needs recess time to play with kids his own age. We told him that it's okay to say hi to him and see how he is, but that it's important that he let Sean play with his classmates, too.

I think it helped. I'm confident that Sean is doing well there. I went to have lunch with them one day and stood by the fence watching them play for awhile at recess afterwards. Aidan saw me right away and ran over to say hi. I asked where Sean was and Aidan ran off to find him. A few minutes later, Sean came running over with two girls he was playing with, they said hi to me, then Sean said "Bye Mom!" and continued to play chase with the girls.

Yeah, he's doing alright.

Thursday, October 7, 2010

Sniff, sniff, drip, drip

Yeah, that's me today. I have a cold and have been going to bed early and napping with Ella. Afraid I don't have the mental clarity to write a lengthy post today. Hopefully it will pass soon!

Wednesday, October 6, 2010

How I Spent My Summer Vacation: Lots o' Knitting

I kept my hands busy this summer! I found myself staying up late knitting and watching reruns on tv after the kids went to bed most nights. Plus, the drives back & forth to visit my family or going to Wichita gave me nice knitting time, too. Here's my finished pile for the summer.

First up was an Elizabeth Tunic and matching shorties set for a church friend's new daughter. What fun it is to knit tiny pieces! I used cotton yarn for the first time, Bernat CottonTots Solid. The trim is Country Red and the body is Dollhouse Ombre.

I gathered up scrap yarn in boyish colors and knit a pair of wool Sheepy Pants shorties for a cloth-diapering friend's one year old. Here's why we like wool with cloth diapers.

A pretty Oriental Lily dress was next for my friend's daughter's first birthday. I used a superwash wool, Cascade 220 Paints, for it. I LOVE this pattern! I've got to make another one and this yarn was so nice to work with, too. I didn't take very good photos of it before I mailed it, but luckily my friend sent beautiful action shots! I also whipped up a little toy fishie out of the leftover yarn.
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I started an Elvira dress for Eleanor, using fingering weight hand-dyed wool by a local dyer. I lost my steam on it, though. and set it aside for a bit. It's a pretty start, though.
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I made a Ruffled Summer sweater for Eleanor as a quick break project in between working on the Elvira dress. I knit it a size up to last till next year. This is made with Plymouyh Yarn Encore Worsted.

And, lastly, I made a pair of Sheepy Pants longies for Eleanor to wear this fall. These were knit in the Baba Sienna colorway on wool Peace Fleece yarn.


I feel pretty good about what I got accomplished over the summer, especially since I didn't expect to get more than a one dress for Ella done. I was able to start going to Knit Nite at my local yarn store on most Tuesday evenings while Doug stayed home with the kids and I think that really helped keep me motivated. It was so nice to get out and hang out with other women in a relaxing atmosphere.

For this fall/winter, I have a few things I hope to make (roughly in this order):

1. Children's poncho #243 for Ella with this fabulous yarn from Mosiac Moon. Have the yarn and the pattern is in route to me.
2. Make the Hudson Hat for my 31 for 21 comments winner. :)
3. Possibly finish the Elvira dress.
4. Knit a dress for a friend's daughter's 2nd birthday. Already have the yarn and pattern, but it's a surprise. Birthday is in December.
5. Newborn or small dress or longies for a friend's baby. Have the yarn, haven't decided on a pattern yet.
5. Knit the boys something for Christmas. Either a Hudson Hat or this vest #256.
6. Knit some doll clothes for Ella's dolls as her Christmas gift. I'll use up yarn I have for that.
7. Not likely to happen, but would like to try knitting socks after I get thru this list. :)