The Scenic Route

I can't agree with this statement more.  Since Ben was born, we have met amazing people, learned so much, and gone places we never would have gone if we had not had Ben.  The Down syndrome journey is not one I had planned, and we got at a much slower pace, but I sure do love my tour guide!

How Do You Respond?

A while back I went to the Dr. to get a check up.  She asked how I was sleeping.  I told her that I was sleeping fine, but I have lots of external factors that often prevent me from sleeping all night.  One of those factors is Ben.  He had some issues with his ears, and is a newly trained potty user, who can't always hold it all night, and still wants Mom there with him in the dark when he has to go.
She replied "I think it is great that you are working on potty training with  him.  I have a friend who is a para at a school and works with a second grader with Down syndrome who is not potty trained, and she says she spends most of the day working on toileting when they should be working on learning.  They (meaning kids with Down syndrome)  are completely trainable."  I just looked at her for a second (as if she was nuts) and replied "Why wouldn't we potty train him?"

When someone says something that bothers me, I always try to figure out where they were coming from.  I know she was trying to encourage me that getting up every night to help Ben use the potty, will have great long term benefits for Ben and for us, but really?  More alike than different people.  I have tried to let it go, but am having a hard time.  It really makes me sad for the family of the 2nd grader.  I don't know who it is, but I am sure they have been trying very hard to train their child, but that it just has not clicked with the child yet.  Each child, learns at the their own pace. Ben may have been reading sight words as age 2, but he did not really get potty training until he was almost 5.  Other kids with Down syndrome might potty train at 2 or 3, but may not sight read words until they are 5 or 6.  Each child is an individual, with their own strength, weaknesses, and learning time tables.

I guess I am holding up the doctor to a higher standard that I would do for others.  When Ben was younger I had a relative ask if he would be able to be potty trained.  She, like the rest of our family, did not know much about Down syndrome until Ben came along and was just looking for information.  I told her yes and gave her some statistics to help her learn.  But when dealing with doctors, we feel like they should already know, some of these answers.  I want to spread positive awareness, so I need to remember that even with doctors, there are teachable moments, and be prepared to educate and not take offense.  

Ben's Brigade 2012

This weekend was our local awareness walk. This was my first year co-chairing the event and the day started at 6:45 am and the temperature was at 26 degrees heading for a high of 50. But that is how the weather is in Nebraska. 80 one day and freezing the next. Unfortunately we got the freezing day. But at least the sun was out and the wind was not blowing, so it did not feel that bad.
Other than the weather and some unexpected construction, the event went pretty smoothly.

 A huge thank you to everyone who donated, volunteered, or walked at the event. Ben's brigade raised over $2,000 dollars and we had around 50 walkers. It was a great day and we appreciate all the support we received from family and friends.

 We are thankful to everyone who helped make the walk a huge success !