Thursday, March 4, 2010

Road Tripping with Sam

Our first road trip with Sam was to Williamsburg, Sam was 3 years old and we were in the midst of potty training. I knew from other stories I had read that I wanted to get past this milestone probably more than most people, however very few people realized what my true driving force was. When Sam was originally diagnosed with a brain injury along with Down syndrome, a Children's Hospital doctor had told me that Sam would probably have difficulty with potty training and we shouldn't really begin trying until he was older, like maybe 8. After that statement, my mind went blank, I don't think I remember much of what he said after that. It was one of those times that the reality of having a child with special needs slapped me in the face. At that point, I couldn't imagine having to change a diaper on an 8 year old child. I knew how much I had looked forward to the day when my other two children were out of diapers and this new information was really weighing heavily on me. It was again, a time that the Lord was testing me, how would I react....what choices would I make? I could have accepted what the doctor said as truth, I could have revisited that "whoa is me" "why me" destructive/debilitating state of mind that most parents of special needs children experience, I could have been angry at the doctor, at God, at the idea of again another hurdle my child didn't need to have. So what was I???

I was mostly angry at the doctor, I wanted to know where the hell he got his crystal ball from that told him how Sam would be at 3, 8 or as an adult?? I would have paid anything at the time of either of my children's diagnosis for an instructional manual that told me how and what I needed to do to make everything okay. Now...9 years down the road I still long for that instructional manual at times but I have a new understanding that the lessons learned on this journey is really the gift I have been given. Now...9 years later and after having had the privilege of working with and experiencing other special needs children and their families, I have come to understand that I would have figured it out, it would not have been the "end of the world" as I once thought but instead yet another challenge/demand that comes with raising a special needs child. I chose to ignore the information the doctor provided (actually I think he inspired me to prove him wrong but then again that's part of my personality and I chuckle when people think Sam got his stubbornness because he has Down syndrome...NOT). I would love to see this doctor again sometime and let him know that his crystal ball was wrong. Sam was fully potty trained, even through the the age of 3 years old.

Okay, off my soap box and back to the roadtrip. We took Sam's potty training chair with us in the van and kept him on his timed schedule. My other two children found it gross that Sam was "doing his job" at times while we traveled. Yes, it could have been a safety issue but at that moment in our lives it was more of a sanity issue. We wanted to help him be successful in meeting this milestone, no matter what the sacrifice. He did wonderfully on that trip and we were all proud of his accomplishment.
Sam has always been a good traveller as long as you have certain preparations. So, the big question, what are those preparations?? Well Sam is on the SCD diet so it is crucial to have SCD approved snacks and beverages while we travel. It's not so easy to pull into a McDonalds and find something that will work, although a salad, bottle of water or the occasional diet soda comes in handy in an emergency. We pack nitrate free turkey sticks, some cut up vegetables with Sam's favorite dip, Beanos Chips, his sparkling green tea that we refer to as soda and other similar snacks. We have always taken along a DVD player with some new movies as well as a few known favorites that only get to be viewed when we travel and in case of emergency. We bring along some CD's for Sam to listen to and enjoy hearing him sing his favorite songs. Some of his favorites are "Kiss Your Brain", "Time to Sing" which is a wonderful slow tempo CD of children's songs and of course a few country music CD's. We pack small toys that can be played with in your lap such as Trio blocks (an all time favorite of Sam's), bendable figures, and a DVD of family pictures that he can look at and talk about. A blanket is always a good idea for that peaceful nap (which are few and far between at this point).
All in all Sam travels well. We began by taking him on short trips and then worked up to longer trips. The trip to Utah was by far our longest to date. In the early days we had the "NO" behavior to deal with but on our more recent road trips Sam has learned to go with the flow and enjoy the adventure! Life is good!


  1. You're awesome Sue! I love the fact that you take information from the "professional" and use it to inspire yourself to prove him and the stereo-type wrong!

    Way to go Sam!!! You are our inspiration!

    Raquel and Noah from AZ.

  2. Thank you for this post! I am a new reader, and as a single mom who loves road trips this was good to hear. I have 2 bio children who also love road trips, and I have just adopted a 9 year old boy with Down syndrome. We plan to take our first short "practice trip" this spring.

  3. Great post Sue, don't you love how dr's seem to know everything. It frustrates me at times, because my husband lives off those words, however, I am more like you and feel well let's prove everyone wrong. I think our kids need that strength and stubborness as you would say.

    We did the same thing when we went back east for the holidays, potty seat in the car, got a great potty seat that had compartments that I could put pullups, wipes, bag, books, etc. So I'm with you...stay strong.