Downs Ed Conference

This weekend, we went to KC to attend the Downsed conference sponsored by the DSG of KC.   It was a wonderful conference where speakers like Sue Buckley, and Julie Hughes (photos below) did presentations on a variety of topics, broken down by age groups of 0-5, 5-11 and 11-16.  We attended the 0-5 track and enjoyed presentations on developing language and communications skills, developing early reading skills, supporting speech and verbal memory, developing play number and cognitive skills and behavior.

Sue Buckley

Julie Hughes

During our 4 hour trip home (it was snowing...again) I had time to think about what I learned and all the concepts I wanted to try with Ben when we go home.   Here are some of the more important things from the conference:

Visual Learning -I had heard before that children with Down syndrome learn better when visual teaching techniques are used.   In fact, just last week I took pictures or everyday things around our house to make learning cards for Ben.   The Downsed group did a really good job of breaking down the learning process for children with Down syndrome so that I could understand why visual learning works so well.  They offer a system called See and Learn that is much like the pictures I too for Ben.  I just need to make a few adjustments to my cards, and they will be much more effective learning tool.

Errorless Learning - Start lessons out very easy so the child can not fail.   Then slowly start making each lesson a bit harder.  By using errorless learning, you can prevent children from getting frustrated and giving up.  We need to work harder at teaching our kids instead of testing our kids. 

Reading - Even very young children can be taught to read, first by word matching, then selecting and finally by word naming.  It has been found that children with Down syndrome learn better when taught whole words first and then after they have a good understanding of sight words, go back and teach them phonics.   One of the most impressive parts of this session was a video clip of a 4 year old boy with Down syndrome reading.  The lesson I took from this section, was that we should never stop raising the bar.  If we keep challenging our children, there is no telling what they will be able to accomplish. 

Language vs Speech - Ben understands a lot.  He just can't say anything.   He has a communication goal that up to now has been mostly sign and a few picture cards.   What I learned is that speech and language are two separate items that are often on very different levels.  We need to get him some actual speech goals starting with teaching him the letter sounds, while continuing to expand what he can comprehend.    

Behavior - Most children with Down syndrome are very social.  However because they are so darn cute, and they look at us with those beautiful eyes, they soon have many of the people in their lives jumping to help them.  Our job as parents is to give them chronological age appropriate boundaries and behavior goals.  They may need some support to meet these goals, but good behavior will only help our children later in their lives to be accepted by their peers. 

This is just a small part of the information we learned on Saturday.  I need to go back over my notes and pick out some activities to start with Ben.  We also brought home a video that has speech and language activities for preschool children with Down syndrome.  I look forward to watching it this week.

  This was my first conference and I had high expectations that I would learn a lot.  The good people at Downsed did not let me down.  It was a great learning experience.  Plus I got to spend a night out of town with my husband and without the kids.  This was Ben's first time spending the night at Grandma's.  He did great, but I think she would have liked to sleep in a bit longer.   

Parents from the DSAF of NE group who attended the conference.

We're More Alike Than Different

A while back, I noticed on another blog Monkey Musings a post about the the National Down Syndrome Congress campaign titled We're More Alike Than Different. In this campaign, they create posters meant to show everyone how children with Down syndrome are more like typical children than they are different. All you have to do to make a poster is fill out an online form and send in a picture, and the NDSC does the rest. In about a week they email a PDF poster of your child that you can take to any printer to be printed. To find out more about making a poster of your own, click here.

I thought about it for quite some time, wondering which thing Ben does that reminds me of when his older brothers were his age. He likes music, dancing, throwing balls, playing with toys, reading books, and clearing out the cupboards. But one of his favorite things to do, especially when we are not looking, is playing in the toilet and getting into the toilet paper. While his two older brothers are pretty good at attempting to get the door shut, they do not always get it latched, so Ben takes it upon himself to systematically check the doors and drawers around the house to see if anyone might have accidentally left something open that just might have something fun in it. The bathroom is no exception.

One afternoon recently, it was just a little too quiet for a minute, and when I saw the bathroom door cracked, I knew who was in there. Luckily the toilet seat was down, so the next best thing to for Ben to play with was the toilet paper. I quickly grabbed my camera and took a couple of shots.

Yes, I could have chosen a topic that was not quite so silly for Ben's poster. However, I truly think all kids know, if they want to play with something that someone's told them not to play with, they need to be really quiet - aka sneaky. Ben may have some delays in some areas, but at 23 months, I think he has getting into trouble down pretty good. He is ready to jump into his terrible two's with both feet. Are the rest of use ready? I hope so.

Sorry the poster picture is so small. The text reads: What toddler does not like to play with toilet paper? It rips easily, and comes on a handy little roll so it is easy to get more. Go ahead, leave the bathroom door cracked. I dare you!

Skate Daze, Basketball and Surgery, Oh My!

A few weeks ago we were lucky enough to be able to attend the Omaha Down Syndrome Parent Network event at Skate Daze in Omaha. They have a giant indoor maze for the kids to play in and some fun video games. Ben loved the ball pit even. I hated to see him in it as I knew it was a total germ fest. I was surprised that a place like that did not have any hand sanitizer dispensers.

I tried to hose him down when we got out, but the damage was done. The runny nose and junky cough started within a day or two of our visit. We did also visit the Amazing Pizza Machine that day as well, so he could have picked up the germs there, but at least the APM had hand sanitizing dispensers everywhere you turned. Here are some pictures of the boys at Skate Daze.

Come on Mom! There is not that many germs in here!

Concentrate! Don't wreck!

I totally know my Mom is trying to take a picture, but this game is far too cool for me to care.

Noah is the luckiest person I know. I am pretty sure we will be taking a trip to vegas for his 21st B-day. He wins at everything. Especially poker. He could be betting with a pair of 2's and not even know he got a flush to win the hand. So while at the Amazing Pizza machine, they announced that everyone could sign up to win a play card worth $50.00. The boys were ready to play, but Ben was still eating, so I took the older two to sign up, to kill a little time. Guess who won. Of course Noah won. So after that we did not have to worry about which 2 rides they wanted to go on, as they got to do any ride or game they wanted. It was fun.

John's basketball team continues to do well. John and I have been battling about his hair. I took the picture below just so he could see how silly his hair looked when he was all hot and sweaty, and it was sticking up in different directions. The next day, he let me buzz all his hair off. Noah let me trim his up too. I think John will be much cooler at his games without all that thick hair. Plus I love to rub his head just after he gets a fresh buzz. I will post a picture after his next game so you can see the difference.

Ben is a little stinker. He is so sneaky. He is constantly going around checking all the doors and drawers to make sure the non toddlers in the house shut things up tightly. Every now and then, things get too quiet, and we know he has found a weak spot in our defenses. On this occaision, one of his big brothers did not get the bathroom door shut all the way, and he was just having a blast with the toilet paper. Luckily I caught him while most of the toilet paper was still on the roll.

Ben is having surgery this week to put in a second set of ear tubes, and to get stints in his tear ducts. It is fairly minor surgery, but please keep him in your prayers this week, that all goes well.

Mom....I miss you.

Four years ago on January 25th my Mom lost her battle with cancer. In some ways it seems like only yesterday, it other ways it seems like decades ago. The end came much faster than we expected. While we were glad that she no longer had to suffer, there were many things that I wished we could have talked about before she died.

Mom was a wonderful musician. She could sit at her piano for hours and could play just about any song by ear. I miss that so much. Ben and I sit at her piano some times and he bangs on it. But I no longer have any way to recreate the beautiful music that she could play. John took lessons for a few years, but does not spend much time at it any more. She also loved her grandchildren who were just 7, 7 3, 3, and 1 when she died. She never got to meet our little Ben.

In the days following her death, I was looking through Mom's jewelry drawer to find a piece of her jewelry so I could make matching bracelets for my aunts and sister-in-law to wear to the funeral. I was speaking with on of the nurse aids who was helping to care for my Dad who had just gotten out of the nursing home after a bout with pneumonia and had a necklace in each hand. I liked the one in my left hand better and said to the nurse aid, "Do you think this one might work?" At that very second I felt a tug in my hand and saw the the necklace had just broken while lying flat in my hand. I said" Oh, Thanks Mom! Since it is now broken, I guess you won't care if I use it." I had told my kids that Grandma was now one of their angels and that she would look after them, but until that moment it had not really hit me that she would be watching out for me too.

The bracelets got done in time for the funeral and each included a picture charm . I used a picture that was taken after Mom had gotten sick and I knew that she was not fond of it. However, it was the right size for the charms I had, so I used the picture anyway. For some reason something always happens to the picture in my charm. First it got wet, then it got smudged, then it just fell out all together. Each time I replace it with the same picture. I never did ask my aunts if thier pictures were still OK, but I would not be surprised if they were not. Currently my bracelet is sitting in a drawer in need of a new picture. I am going to try to shrink the picture on this post which she did like and see if that one lasts longer. I have a feeling it will.

A few weeks after the funeral, I still had the feeling that Mom was looking out for me. So for fun I bought a lottery ticket. She was always telling me how I needed to stay home with the kids, so I figured if she could do anything to help me win, she would. Not that I was expecting to win the jackpot or anything, but a few thousand dollars would have been nice. Needless to say I did not win.

Fast forward to October 2007. I had just lost my Dad and was pregnant with our third child. Taking care of Dad had been hard, but we were able to grant his wish and keep him at home also. In the weeks following his death, I felt very lost. I no longer had anyone to look after, other than my husband and kids. While they did and still do need me, they are all healthy and able to look after themselves for the most part.

The day was fast approaching when I would get to have the ultrasound to find out the baby's sex. I had convinced myself that it would be a girl. Mom had always told me that I needed to have a little girl. Somehow, I felt that Mom had pulled some divine strings and that this surprise baby was the little girl she always wanted me to have.

I was still in shock, and a little disappointed that I was having another boy, when the doctor told me that my blood tests were a bit off and my odds of having a baby with Down syndrome were something like 105 to 1. We decided to go in for the level 2 ultrasound. In my mind it was just to prove that my baby was completely healthy. I had not even done any research, and was convinced that everything was fine and the ultrasound would rule out any problems.

After finding out about a couple soft markers, fluid around his heart and and a very slightly thickened nuchal fold, we decided to have the amnio. I still was convinced that the baby was healthy and this test would put our fears to rest. While we waited for the results I started searching the web to find more information. Two days later we did indeed learn that our baby did have Down syndrome.

Fast forward to today. Our son Benjamin is a happy, healthy little 22 month old boy. Ben and I were playing the other day, and he was absolutely cracking up about something silly that I was doing and it hit me... I did win the lottery. I never seem to be lucky at anything, but this time I won. Not a monetary win, but something much more valuable. I completely believe that Mom and Dad were both looking out for us and that they helped to guide Ben to us. Because of Ben, I now work part time, and am able to spend more quality time with all my boys. We are able to slow down and enjoy things more, and we have gained a perspective on what is really important in life. To me those things are worth more than millions of dollars.

Thanks Mom! I miss you.

11yr Old, Basketball and continued sickness

Happy Birthday John! Just 2 days ago, our oldest son turned 11. Wow! He is just a few years away from being a teenager. I am so not ready for this. We celebrated by going to Applebee's with Grandma and Grandpa on Sunday, and John got a big chocolate dessert all to himself. On his actual Birthday (Tuesday) we had pizza and cheesecake. Saturday we are going to a Down Syndrome event in Omaha at Skate Daze, and then going to the Amazing Pizza machine to finish out the celebration. Last Saturday and Sunday were his first two basketball games. They beat Weeping Water, and lost to Louisville by only 2 points. They were great games.
Here are a few pictures from the Louisville game.



Ben and Noah were not quite ready to give up on the stomach flu and decided to get it again last week. This version lasted a bit longer, and made them feel worse. Then they were gracious enough to share it with me. No fun. Ben decided twice was not enough and got it just one more time for good measure. I did not know a baby could vomit that much. He was only a little bit cranky this time and slept pretty good except for when he threw up in his crib. Since he was running a fever off and on, we went in to the Dr. just to make sure it was the stomach flu and not something more serious. With surgery coming up to replace the tubes in his ears, they decided to do the antibiotic shot this time. Wow! That did the trick. It was like someone just turned off the snot faucet and all of a sudden he was better. Now we just need to keep him that way until surgery. That will be the hard part. Hopefully the Lysol bomb that I set off in the house Monday will do the tick and keep the germs at bay.

Happy New Year...Sickness Stinks...So Does Snow

I would like to start by wishing everyone a very belated Happy New Year! We rang in the new year with a family game night at our house. We had lots of fun eating, talking and playing games. The kids had a blast. I was wiped out the next day and did not even get out of my pj's until nearly supper time. Below are a few pictures from the evening.

We have had quite a bit of sickness at our house this week. Ben was up very early Tuesday morning, (12:30 am until about 2:30 am) wheezing and coughing. It seemed like I had just got back to sleep when Noah came in and said "Mom. I need to show you something." A quick check of the clock showed that it was now 4:30. At least I got a couple hours of sleep. The something he wanted to show me was that he threw up in the sink in the bathroom. Hey, at least it was not his bed. That earned him a $1. It was a quick clean up, and so I got to go back to bed again. I feel asleep again about the time Randy's alarm went off. I let him know what had happened, and that I was really tired, and was volunteering to stay home. The rest of Tuesday was pretty uneventful. Noah seemed fine all day, and ate normally. Ben was still wheezy, but doing OK. He is still on antibiotic from his ear infection last week so I was not too worried about him.

Since they were predicting snow and Randy had something to do after work, we headed into Lincoln to do some errands and get some groceries in case we got snowed in. At HyVee they had a special for 99 cent pieces of pizza. Both boys were bugging me for pizza. I asked Noah if his tummy felt good enough for pizza and he said yes. So I let them each get a slice. Big mistake.

They called off school already before we went to bed because of the snow and bitter cold. Ben started running a fever, so I gave him some Tylenol.

About 12:30 am (again) Noah came in to my room and said "Mom, I think I am going to throw up!" I rushed him into the bathroom where he broke the bad news. "Mom, I already threw up on my bed and the floor. Nice. I am not liking the new carpet that much now, as it is really hard to pick out bitty pieces of mushy smelly pizza. I moved him to the couch and Ben to our bed and set to work cleaning it up. I don't even know when I got back to bed, but I was glad I did not have to get up in the morning.

Randy went to work the next morning (Wed) so I thought I would try to sign in to my work from home. Ben woke up and started crying (very unlike him). I picked him up an sat him on my lap while trying to type. He was still fussing and I could not figure out why. Then he coughed funny and I figured it out as he threw up in my hand. Poor baby with an ear infection, some nasty viral something, and now the stomach flu on top of it. How can one little baby have so many things going on at once. Needless to say I did not get much done that day other than rocking my sweet little boy. About mid morning he started signing eat, so we tried a little oatmeal, and a bit later some mac and cheese. By supper he was starving again, so at least I knew the flu stuff was gone.

Randy got home and reported that it was pretty bad out. By Thursday morning we were officially drifted in. Now I was starting to get worried. We only missed one of Ben's doses of antibiotics due to the stomach flu, but his breathing was getting worse. The wheezing was getting louder and his respiration rate was increasing. I could tell he was not in any immediate danger, but knew that it could turn for the worse at any point and here we are snowed in.

We tried warm liquids, and setting with him in the bathroom with the hot shower going to try to loosen him up but nothing seemed to work. This morning however, his fever seems to be much lower and his respiration rate is slower too. He still wheezes somewhat, but it is not as bad as it was. We are still completely snowed in, but I am not as worried now about having to call someone to dig us out so we can get Ben to a Dr. Randy and the boys ventured out despite the cold to see some of the drifts and even went over to check on the other house. Here are some pictures:

The drift by the other house

John and Noah laying on one of the many drifts in the road.

The road looking north. Don't let the foreground fool you. The drift at the top is shoulder deep.

The boys climbing some of the drifts.