Thursday, August 29, 2013

iPad as a Communication Device

If your household owns and iPad, or if your child uses one in school, you probably already know how well our kiddos can manipulate and utilize this technology.  It can be used to play games, learn to trace your letters, read, count and even speak for you.   There are communication apps you can buy that have more flexibility and are less expensive than some of the more traditional communication devices.  It is even more impressive when your child uses his iPad to communicate with you when you don't have a communication app installed on your device.

Let me explain.

Full day kindergarten has been rough.  Yesterday was particularly rough and Ben had some aggressive behaviors that earned him a great deal of time out, emails to Mom from the Special Ed director, and his teacher, and a phone call from both the school secretary and finally the Principal.

He had a BAD day.

This behavior is somewhat out of character for him and generally only happens when he is on the verge of getting sick.   He also struggles with constipation at times and that can make him cranky too.  So yesterday we gave him some Miralax before he went to school.  He also had a messed up routine due to school pictures being yesterday, which probably did not help his behavior much either.

 I learned at one of the conference that I attended, that when children (and adults) are in pain or afraid, their language skills decrease by an average of 2 years.  I think this explains why when he hurts or does not feel good, he just clings to me and signs hurt and won't do much else.   He did answer yes once yesterday when I asked if he had an owie, but would not tell me more. 

He got off the bus last night and seemed pretty good.  His Miralax worked while he was at school and he looked like he was feeling fine and happily played referee in the basement with his whistle.  We also had a talk about how we don't push, hit or scratch and he lost his popsicle after school treat and TV privilege.

At 6 we had to leave to pick up brothers from Football practice.  Ben fell asleep pretty quickly once we got in the car.  When we got home I put Ben on the sofa to continue sleeping for just a bit and started getting supper for the big boys.  At 8 after trying for over a 1/2 hour we finally got Ben up for supper. 
He ate 3 grapes and drank a couple sips of apple juice.  Then he climbed on my lap and said, "Night, Night please".  He NEVER asks to go to bed. 

This morning he was up as soon as Randy turned on a light at 6 am.  After a trip to the bathroom he snuggled in with me for a bit.  Soon he was asking for the iPad.  I gave it to him and tried to catch a few more ZZZZs.  My alarm went off and I hit the snooze a few times.  Ben was playing with a flashcard game that speaks 2 words called Learn to Talk First Words .   He had been repeating one card over and over again for at least a couple minutes, and was shaking me each time he played it, but I was zoning out.  Finally he said, "Mom Potty!"knowing that would get me up (because Mom does not like accidents in her bed). So I headed toward the bathroom while he headed for the kitchen.  I said, "Ben, don't you have to go potty?"  He turned to his iPad and tapped the flash card again.  It said, "want food".

Mom finally got it.

But now I am torn.  He is perfectly capable of saying I want food, time to eat, I hungry, breakfast please, or I want pancakes, but instead chose to tell me by using the iPad.   On the one side I am so impressed that he was able to find a way to tell me what he wanted, since we don't really have a communication app on the iPad.  But on the other side, why didn't he just tell me?   Maybe he did and I was just too tired to internalize what he said.  Or maybe he does not feel good or is in pain.  He has been on a very low dose of Thyroid meds for about a month.  Maybe they are causing issues?   He has been specifically acting different since Sunday and maybe he is coming down with something?  I wish he could tell me what is going on.

But whatever the cause, that was some great problem solving skills buddy!

Sunday, August 25, 2013

Communication Breakthrough!

Tomorrow is our 18th wedding anniversary.  Since it occurs on a Monday, we decided to go out and celebrate on Saturday night with a nice dinner at a new Italian restaurant and after went to a movie. 

We hardly ever go out.

And never to eat and a movie.

So my friend Jo came out to keep the older two from fighting and to watch little Ben, and we had a wonderful time enjoying our rare evening out.

We got home about 10 and Ben came running up to me sniffling like he was crying.  I asked what was wrong, but he just clung to me.  We sat down and he was instantly on my lap trying to tell me something.  It sounded like he was saying something that started with an "s" but I just was not getting it until I noticed his hands.  He was signing scared.  I said were you scared when you woke up and Mommy and Daddy were not home.   Ben got the biggest look of relief on his face, screamed YES and gave me a big hug.

This was huge for Ben.  While most parents of Kindergartners have kids that come home from school and chatter on happily about their day, I usually have to read about what happened and then prompt him by asking questions.  Most of the time the best answers I get are yes and no to my questions.  Sometimes Ben goes off on long orations about his day, but is speaking so fast and not clearly enough for us to understand what he is saying.   Often he uses signs to help us understand a few of  his words and sometimes we can get an idea of what he is trying to say.  This was the first time he ever came up to me completely unprompted to tell me how he was feeling and kept at it until I figured out what he had to say.   

I asked later if he had fun playing with Jo and he very enthusiastically said "Yes Mommy!  Thank You."  So glad he had fun with Jo even though he was scared when we were not home when he woke up.

Ben is also developing quite the little sense of humor.  The other day he walked up to me with the container of strawberries and said, "strawberries, please".  However, he had one of my price tags across his nose.  I asked him, "Ben, what is on your nose"?  He said and signed, "hurt, Mommy".  I said, "Oh Ben, did you hurt your nose?"  He said yes and skipped off with his strawberries giggling as he went.  Silly boy.



Thursday, August 22, 2013

First Day of School

Last week was Ben's first day of Kindergarten.  He was so excited to go.  He is in the general education class room, and there will be no para in the room.  However, they will have a student teacher for the first 6 weeks of class, so that will help, and then we will decide what level of para support is needed if any.

We went on a Tuesday night to the orientation where Ben got to find his desk, put his supplies away, and reacquaint himself with the classroom.  He spent about 20 minutes in there, decided he was done, and took off, sprinting for the gym.  He helped himself to a ball (there is a rack in the stairwell that leads to the stage, and stared playing basketball.  He was already at the free throw line ready to take his first shot when I caught up to him.  Mr. Warner the gym teacher was in there and I told him, if Ben ever comes up missing,  they should check the gym first.  The boy loves any game that involves a ball.

The first day of school was cold for Nebraska in August, so we took our traditional first day of school photos inside.  I loved the expression on Ben's face on his solo picture.  It think it really captured the joy he was feeling about going back to school.

Noah was not very interested in giving Mom a first day of school smile, so he settled for a "cool" pose.

John just plain scowled until I cracked a joke and made him laugh.  


 I was quite happy to get this pleasant of look on all of their faces at the same time. 


I am so glad I had him rid the bus home.  When I asked him what his favorite thing was from the first day of school he said, "I ride bus"!


 But full days of Kindergarten are hard on little boys.  It took a couple episodes of Barney the first day, but he was out.  He is getting better, now a few days later, but you can tell he is tired from the meltdowns that occur on a regular basis after he gets off the bus. 



 Hopefully things will be better next week.

Saturday, August 10, 2013

2013 Step Up for Down Syndrome Walk

The W Family would like to invite you to participate in the 11th annual Step Up for Down Syndrome Walk on October 5, 2013.   


How can you help?  Many different ways!  You can support Ben’s Brigade by walking or donating.  You can sign up to do either by going to our team fundraising page by clicking here. Adults are $20 and Kids are $10 and if registered by September 15th you get a free t-shirt with your registration. If you can't be there the day of the walk, you can still support Ben by being a virtual walker.  
Students and faculty of Elmwood - Murdock School can register for free by joining the Elmwood Murdock School Team by clicking here. (School team registrations need to enter a coupon code of "school" and do not get a t-shirt so wear school colors.)


The walk is 1 mile and starts at Antelope Park (by 33rd and A streets), but there will be so much more than just the walk!   There will be food and fun for the whole family with the String Beans, Der Viener Schlinger, Face Painting and much more.


August 31st is the deadline for the Early Bird Fundraiser.  For each $200 we raise by that date, Ben gets a fact poster displayed along the walk route (limit 3).  So far we have enough pledged to earn one poster.  It would be great to earn all 3!
September 15th is the deadline for getting a free t-shirts with your paid registration.  So don't wait, register or donate today. 


 We are so proud of Ben and all that he has accomplished in the last year.  He loved going to preschool and playing T-ball and working on his reading skills.  He also enjoyed cheering on his brothers at all of their sporting events.  Ben is looking forward to starting Kidergarten at Elmwood Murdock this fall.  Thank you to everyone who has donated in the past and to those who are planning to donate this year.  You are helping to make a difference in the lives of individuals with Down syndrome in our community.


We appreciate everyone's support.
Thank You!

The W Family