Saturday, October 30, 2010

Annual 21 Facts about Sean List

I love reading these on other blogs each year, as well as looking back at my old ones. Here is 2009, 2008, and in 2007. Let's see if I can think of 21 for this year!

1. Sean is very ticklish! I love to hear hm giggle just because I run my fingers across his back.
2. Sean's favorite treat is Dairy Queen ice cream cones. He only eats the chocolate soft serve ice cream in a cake cone. We've tried to get him to eat other ice cream, but he doesn't usually comply.
3. Sean loves alligators and sharks. He likes books about them, toys, movies, and songs about them.
4. He got two stuffed alligators for his birthday and sleeps with one of them.
5. Sean likes to jump on trampolines/bounce houses, but only if no one else does at the same time. His balance isn't strong enough to handle others bouncing.
6. Sean loves playing matching games. We lay out memory cards and he likes making matches out of them.
7. Puzzles are a big favorite, too. We still give him wood puzzles to work with, because he occasionally chews on cardboard pieces.
8. He loves to watch his brother play video games on the Playstation and he plays several games as well. His eye-hand coordination has really grown by playing games.
9. We are convinced that he will develop some type of performance hobby. He has a really good memory for acting and re-creates scenes from his favorite things.
10. He likes to navigate his way around youtube, clicking on Disney Cars clips, Mater's Tall Tales, and Spongebob Squarepants clips.
11. He likes getting his hair cut, doesn't mind hair washing too bad, but really hates having it combed. We keep it short so it doesn't get too crazy looking in the morning.
12. He really really really dislikes having his nails clipped.
13. He's on his third pair of glasses this school year. He does pretty good wearing them at school and out of the house, but at home he takes them off immediately.
14. He can pedal his trike, but would rather scoot it with his feet.
15. He can sing the ABC song, but we are still working on letter recognition.
16. If you sign a letter he will say it faster and more accurately than if you show him a letter.
17. Sean likes drinking Dr Pepper, so after church he gets two quarters to buy one to drink with his brother during coffee hour. He puts the money in the machine and selects it all by himself.
18. We don't give him any soda during the week, so I think it's a feature of church that he looks forward to.
19. Blowing out candles is a huge joy for Sean. On birthday cakes, in jack-o-lanterns, at church, or any where he goes.
20. I love the slap-slap-slap sound his bare feet make on our floors. It just makes me picture his cute, little, flat-footed, gap-toed feet when I hear it.
21. Sean gets keeps getting better with age! More fun each passing year!

Fall Festival at School

Aidan and Sean's school celebrated their Fall Festival today (they don't "do" Halloween, but it sure looked like a Halloween party!) The kids didn't have to wear their uniforms, instead they could wear jeans and an appropriate favorite tee shirt. Ella and I arrived to attend the party right as all the classes paraded out to the playground to show off their favorite shirts to each other. The principal led them in a game of Instigator, which they all seemed to enjoy.

When we returned to the classroom, Sean's teacher warned the class that there was someone strange hiding in the room. The principal joined her to see who was inside. It was a witch! A narrator read the kids the book Humbug Witch while the witch acted out the story.


All the kids were so quiet and attentive!


Ella got very scared of the witch and burst into tears so I held her until the story ended. Now when she looks at the photos, she says, "Ella cry!"


After the story, the kids got to drink a glass of the witch's brew and eat the pumpkin cookies they made earlier.


His teacher had a couple of games planned for them to do, so Ella and I walked down to Aidan's class to see him. We showed up just in time to see him have snacks. Then it was time to pack up and go home.


When we got back to Sean's room to get him, the were playing a Hot Potato game using mini pumpkins. Sean did not like the happy laughing and music, so he was sitting alone with his hands over his ears. :( My poor baby. I sat with him to try to relax him and another mom said, "He is just so cute! When I saw him on the first day of school, I said I want to scoop him up and take him home!" (Uh, thanks for the warning, lady!) After the game ended, Sean's teacher gave him a mini-pumpkin to take home and that cheered him up.

The boys brought home lots of fun goodies and candy from the party. They are super pumped to go trick-or-treating!

Friday, October 29, 2010

A Case of the Naughties


Late last night, I read the post by Tiffany on her blog, Just a Little Bit Downsy, about her daughter having a bad afternoon. I was way too sleepy to comment on it then, but I thought about it as I drifted off to sleep. Gave me time to decide I'd like to touch on it here.

For the most part, Sean is becoming pretty easy-going and doesn't get into as much trouble as he did as a toddler. However, he has his triggers, just like anyone else does. Things that set him off and bring out the grumpy, stubborn, and naughty parts of his personality. Doug and I have gotten really good at reading his signs and try to work with him to avoid his triggers. Mainly because when something sets him off, he doesn't understand us when we try to reason him out of the situation. And if we can't talk him out of, he turns into wet noodle boy that won't budge.

Here's some typical Sean cause and effects.

Cause: Loud noises, such as screaming children, over-crowded areas, fireworks, sirens, loud music. Effect: covers his ears, will not move, screams "no! too loud!", crying until removed from situation. This makes it hard for him to go places like the school cafeteria when it's full of students talking, even the Buddy Walk is difficult for him.

More recently, he has been lashing out at Ella because she likes to shriek at the top of her lungs. He's started hitting and pushing her away from him when she does that. Obviously, we don't approve of her shrieking, because it hurts every one's ears, but we also don't approve of Sean hitting someone because they are too loud. We are actively working on teaching both of them appropriate behaviors.

Cause: being asked to do something (like get ready for school) when he's still tired. Sean is a slow riser, but if we get him up too early then he doesn't get enough sleep and drags on even more. Effect: stubbornness, refusal to cooperate or independently do what is asked of him, snappy. Sean isn't at the point where he just willingly gets ready for school every day. Some days are better than others and some days are much worse than others. In general, it's a daily struggle to get ready on time. We do a lot of the process for him. He won't feed himself in the morning (or he'd do it at a snail's pace) so we spoon feed him. He likes to refuse to go to the bathroom, so we take him to the potty and sit him on it every morning. Once he goes, he's fine to take care of business and move on. He just doesn't want to do things on our time schedule. Same goes for teeth brushing, he will do it himself, but needs us to prompt it. Sometimes he dresses himself, but most of the time we help him. He's very capable of dressing himself, again it's a time thing.

Cause: people that won't do what he tells them to do. Effect: he reflects that behavior back. Example: he likes to walk down the front stairs with me, wants me to follow his step pattern. If I don't he wont's walk down the stairs and I have to physically carry him to the car. He makes up lots of walking rules, wants people to follow his way or he won't do it. He has to be the one to open the door first. Lots of crumbling behavior when people don't do things his way.

This is one that we really work on. We don't want to constantly bow to his will and do everything his way. We need him to learn that everyone has their own pace and way of doing things. Yet, on the other hand, we really can't make the world move at his pace. Concepts like let's hurry, we're going to be late don't matter to him. I'm hoping that eventually he outgrows this and understands more about time.

I think so many discipline issues are based on communication. When you have a child with limited communication skills, it's understandable that you'll have more behavior problems. When I get discouraged about this, I find myself looking at older kids/adults with Down syndrome and how they behave for inspiration. I clearly remember thinking "I am never going to be able to make it through a grocery shopping outing with this child!" Yet, now he is a great shopping companion when we are one on one.

Like with all children, I think the motto "this too shall pass" applies. I hope so, that's many a mama's mantra!

Thursday, October 28, 2010

Naming your Child with Down Syndrome

I thought of this topic the other day while reading a blog post at The Bates Motel. Totally not related to what I'm going to talk about, but the title of the post made me think of it.

Occasionally, I see discussions on Down Syndrome support sites about why they named their child the name they did. Some parents didn't know prenatally, named the baby in utero and stuck with it. Some parents did know prenatally and chose a name based on that knowledge, usually because of it's meaning. And then there is a third version where parents had a prenatal name, didn't know baby had Ds, and then decided to change it at birth when they found out. Some times that change was made out of inspiration, hopes, and dreams for the future of the baby. I'm often so proud of parents that have a prenatal diagnosis and chose to honor a loved one by naming the baby after them. I guess, because to me that shows how proud they are to continue their family tree though this child that may seem so different than all the other branches. A father that names his son with Down syndrome Junior seems to be such an amazing statement of hope and pride. It's very rare that I read of the opposite- a beloved name no longer seeming "worthy" or "fitting" of the unexpected child.

In our family, naming sons was a difficult task for us. We were not interested in doing the junior route, Doug isn't exactly a popular name anymore. Male family names we could of used were either too popular within our families or in general, or just not to our tastes. So we went the 1000 Baby Names Book route. Circling, sharing, and vetoing until we came up with possibilities we liked.

Aidan's name wasn't too hard for us to agree on. It wasn't very popular the year he was born, in fact it wasn't even in the top 50. We were surprised to see it skyrocket to the number one male baby name in just a couple of years after his birth! His middle name is Riley, chosen because we liked how they sound together and it coincidentally was also the name of the county he was born in. Doug liked that his initials spell ARM, he figured it would look cool on a Pac Man high scores screen.



Since we didn't find out Sean's sex until birth, we were less solid in his name. We were very sure on our girl name, but the boys names were wide open. I was pushing for Jared, Joel, or Sebastian. Doug didn't care for those. Somehow we both thought Sean was a good choice. It was a nice Irish name to go with Aidan. Short, didn't lend itself to mean nicknames. Easy to spell, so we wouldn't have to go around constantly spelling it for people like we do Aidan ("With an e or an a?") His middle name, Patrick, seemed like a great balance to the first name. We did toy with other options, including a nod to our family names, but in the end chose Patrick.

Since we didn't learn of his diagnosis for a few weeks, it never crossed our minds not to use it or to re-think it's meaning. As we got used to him and how his name fit him, we learned that it wasn't as easy of a name as we thought. Spelling questions always come up. We like to reply, S-e-a-n, like Sean Connery. Or P-Diddy. :P We only had it mispronounced once- a nurse at a doctor's office kept calling for "Seen? Seen? Is there a Seen here?"

As he's grown older, it definitely fits him. I love that it is short and easy to spell. He's been "reading" his name for quite awhile "S e a n. Sean, that's me!" It took Sean a long time to be able to say his name himself. Most of the time it comes out pretty clear now, but sometimes it still sounds like "On." When Aidan was a toddler, he started calling him Seanie and it's really stuck with us. We all call him Seanie. His preschool teachers asked Aidan, and us, to please call him only Sean as they didn't want him to be confused about his name. They told him he was a big boy and they want to use his big boy name. Phooey. We have tapered it down and call him Sean about 70% of the time.

Ella has only recently started calling him Sean. For some reason, for many months, she called him "Nice" or "Nicey" Doug thinks it sounds like Seanie backwards. It amused us to no end, and even Aidan started calling Sean, Nicey. I shot a little video of Ella saying it, to save as a memory of her special nickname for her big brother. Now that she's stopped calling him that, I kind of miss it.



So, if you have a child with Down syndrome, how did that affect your child's name? I'd love to read more stories!

Tuesday, October 26, 2010

From our Gnome to Johnny's

Last night, I posted a link on facebook to a hat pattern that cracked me up. During the course of talking about it there, a new friend mentioned that she'd love a gnome hat for her kids. I did a search for a free pattern, that happened to use yarn I have and had no plans for, and ta-da! A fun gnome hat was quickly knit up today while I waited in the dentist office, enjoyed toddler naptime, and watched the kiddos play after school. Renee, I hope your little gnomes enjoy it as much as my models did:

Gnome Sweet Gnome


"Always" Happy Gnome


and Full of Angst Gnome


I will wash it up tonight and mail it out as soon as you send me your addie. Happy Halloween!

Less than a week till we pick a winner!

Don't forget that your comments put your name in the hat to get a custom-knit Hudson Hat! :)Something Snuggy for your Buddy!

Making Jack-o-Lanterns









Monday, October 25, 2010

Random Seanies from the Week

Just some bits and pieces about Sean from the past week. Never enough to write a lengthy blog, but fun to remember anyway.

~One of Sean's ears was draining pretty bad last weekend, so we started the week off with a trip to his pediatrician and meds for an infection. (He has tubes, got them last year, they are still in place, this is the 3rd infection he's had with them.) Sean is really good about taking antibiotics, but is not a fan of the ear drops. I'm wondering if it's time to see the ENT again. Sean's usually such a good patient (with the exception of anything that requires sticking tape-like things on him.) He even used to be really good about giving blood, up until the last draw he had this summer. Even as a newborn, he would make a little cry when they first pricked his skin, then he'd just calmly sit through the rest. I remember it being very unnerving to a tech once! Some kids that have to see a doctor so much more frequently have a strong fear of them, Sean's the opposite, he's the pro that knows the routine!

~We showed up for school one morning last week at the same time as a girl that looked like she might be in kindergarten. I asked Sean if he wanted to say hi to her and he did. I asked her if she was in the same class as Sean and she said yes. Once inside, she asked me if she could walk Sean to class. I asked him if he wanted to and he said yes, so they held hands and headed down the hall together. He glanced back over his shoulder with a wave and big smile, "Bye, Mom! Bye, Aidan! See you later!"

~Friday night, Doug and I had a bottle of wine with dinner. Sean peered at Doug's glass of wine and Doug offered to let him smell it. Sean took a sniff and a little light bulb went off in his head. He pinched his thumb and index finger together, then lowered his hand into the glass of Merlot, dipping his fingers in the wine. He pulled them out and licked his fingers, saying "Amen."

~Saturday, after we picked up Grandma from the airport, we all went out to lunch together at an upscale burger/steak place. Sean's favorite thing to munch on at a restaurant is french fries, so we ordered a side of fries for him. They brought out a huge plateful of shoestring-style fries, which Sean loves. Given enough time, he'd eat the whole mound, but he eats very slowly, one fry at a time, dipping each bite in ketchup. Grandma snuck a fry off his plate and nearly lost her hand when he snapped, "No GamGaw! It's MINE! Sean fries!"

~Sunday afternoon, we came home from church and there was a message on the answering machine for Sean. It was one of his kindergarten classmate's moms. She said her son was asking her all day if he could call Sean and talk to him on the phone. She left her number, so Doug called her back and they gave the boys the phone to talk to each other. Mind you, Sean's phone conversations tend to be a mix of words, gestures and babbling, he often talks about what he's doing/playing with/looking at. I'm sure it was an interesting conversation! How funny! I don't even know which kid this is, I think I will have to have Sean's teacher point him out today at pick up time.

Sunday, October 24, 2010

Grandma's Home!

After a six week stay in Florida with Grandpa, Grandma Minner flew home yesterday. The people in Florida think she's crazy for going North for the winter, but there are at least three little people in Kansas that are very happy to have her home. Hopefully, Grandpa will join us soon, too.




A special thanks to our friend, Jan, who was able to recover these photos after I accidentally deleted them from the camera! You rule!

Saturday, October 23, 2010

Pumpkin Pickin'

One of our favorite parts of fall is the fun and excitement of Halloween. The choosing of costumes and the picking of pumpkins. For the last several years, we've enjoyed making a trip to a local farm for our pumpkins. The kids have had so much fun at Harvest Farm in past years, that I think we all look forward to our day there each October. This year, Doug and I had to make the tough decision to cut it out of the October budget, in lieu of the fact that we had several other out-of-town trips and expenses to cover instead.

That didn't stop the boys from being excited about selecting pumpkins this year. Every time Sean's seen them at the grocery store, he's been asking for us to get some. He got a pair of flannel jammie pants with pumpkins on them and has insisted on wearing them every night. His last four books from the library have had pumpkins in them. He picks pages with pumpkins to color first in his coloring books. He has me drawing pumpkins on his MagnaDoodle daily. He has a fine eye for spotting pumpkins on other people's porches.

So, yeah, the boy wanted pumpkins. Doug and I took the kids to do something I never thought we'd do....

we went to Wal-Mart for the sole purpose of selecting pumpkins. Not quite the photo op I had in mind, but we thought we'd take a couple anyway. There was a huge stack of hay bales, which of course my kids climbed up.




Only to be immediately told by WM staff to get down for fear of injury...

Sigh, well, they might not have had all the fun they are used to at Harvest Farm, but they did pick out 4 big pumpkins to bring home and it saved us a good $50. I'm hoping to hold off carving them till Sunday afternoon, so they don't look rotten by Halloween.

Thursday, October 21, 2010

Who's kids are these?

oh em gee, theses are some goofy school pics the boys took! Aidan, with his zipped-lip grin, is trying to hide his shark front tooth. (He has an adult tooth coming in faster than a baby tooth is coming out.)

And, I can honestly say, I have never seen Sean make this weird chin-jutting, eyebrows-popping face before! LOL


Good thing we only pre-purchased the $10 package!

Speech & Down Syndrome

Saw this wonderful article posted today on Facebook and just had to share it here. Deborah Yost wrote about Understanding Speech Difficulty for Down Syndrome today and her example to teach others how difficult it is to speak due to complications caused by Down syndrome is so helpful!

I think when the boys get home from school today, we will have to do a little video demonstration for the blog. Aidan has often asked "When is Sean going to start talking like me?" What a great learning tool this will be! I will share the results tomorrow.

Tuesday, October 19, 2010

Two Dolls Done, Three to Go!

I decided to squeeze in some of my Christmas knitting projects this past week. I tried out a few patterns and came up with outfits for two of Ella's five "dressable" dolls. Here's what I have finished so far.

First, Ella wearing the gorgeous longies I bought knit by another knitter. She wouldn't hold still for a good photo today, so this is about the best I could get.

The knitter sent the remaining yarn to me and I had enough to make this cute set. (Laid my phone there so you can see the scale.)

And the dolly that it fits.

Next, you remember the Elizabeth Tunic dress I made for Ella in the spring.

I had enough yarn leftover from it to make a matching dress for her Cabbage Patch doll. I have more of it still, so I might making something else with it for the dolls.


Making doll clothes is so fun and instantly gratifying. It's going to make it hard for me to go back to knitting full-scale. Ha ha ha

Monday, October 18, 2010

Hippotherapy for Children with Down Syndrome

Sean's teacher emailed me a few photos from the last session he had at the Reins of Hope hippotherapy center.






I'm just so glad to see how much he is continuing to enjoy his sessions there! I grew up riding horses every chance I could during my summer trips to visit my grandmother in the Colorado Rockies. Being able to share a passion for horsebacking riding with Sean is such a dream. In a few years, we will both be able to go on trail rides together through the mountains.

For now, his time on a horse is not a means for sight-seeing, but rather an opportunity to strengthen his core trunk muscles, coordinate his motor planning skills, and teaches him concepts like left, right, stop, go, front, back. It's also a great vocabulary-building tool.





Best of all, it's therapy that makes him happy!

While looking at the new photos, it made me want to dig up old photos from when he first went as a toddler. He was a petite boy, just 30 months old when he began. He went from only walking with a walker to independently walking within a few months of hippotherapy.



A cute video of an early session.
video

Some photos of Sean after he started walking. He'd get so excited when we pulled in to the stables. He even mastered opening the gates.





If you can get your child into hippothereapy, I'd highly recommend it! If you don't have a child that needs therapy, but have time to volunteer, you can look at The American Hippotherapy Association to find a therapy center near you. Most hippotherapy services are run on a volunteer program and fees for riders can be covered through medical card insurance, the public school system, or on an income sliding scale.