Tuesday, October 11, 2011

Road Trip

He sat so quietly there in the back seat. Wide-eyed and full of hope. He had no words nor noises. I think he was afraid to say or do anything to risk what was about to happen.

Although the car was not yet fully packed, he was sitting in his seat. Quietly. Patiently. His blankies were in his lap, and he was ready for the trip.

He was going to see his grandparents, my parents.

"Gam's and Dave's house," he had said many times over the past two years since his last visit. Sometimes he said it and cried. Sometimes he would say it to comfort himself. Without a doubt, he wanted to go see his Gam's and Dave's house. As much as I wanted that for him, I was never able to make that happen. Things just kept getting in the way.

I'm not talking about lunch with the girls or that a scheduled hair appointment got in the way of making the trek from NY state to my home town in north central West Virginia. I'm talking about an ill timed manic episode from his bipolar disorder got in the way, or his gastric system got in the way or he was ridden with OCD and anxiety due to a school break (not exactly the state you want him to be in going into a trip). I have found the effort it has taken for me to manage these things at home to be simply exhausting. Guilty of being human, I admitted to not having the strength to manage them on the road.

Often, I even questioned if HE had the strength to cope with his disabilities on the road. We wanted to see our distant loved ones, but I often found that once we traveled to our destination, we spent more time managing his distress level and less time visiting.

When traveling with our older son, his gastric system alone requires an army to pack and prepare: special foods which likely can't be found locally, cookware to prevent cross contamination issues and dish soap and sponges to wash said cookware. Medicines packed on ice, pre-dosed so that it can be given on the road. Comfort items. Every comfort item under the sun which will put his mind at ease and allow him to sleep.

Please let him sleep. Please let him sleep.

It is such a challenge to survive the night with a wakeful child. It is pure torture to try to do it in a household with people who aren't accustomed to that life. And, in the quiet small town that is my West Virginia home, there are few 24 hour haunts to carry us through the wee hours of the night. What's more, when daylight finally comes, and our son is sleep deprived and seeking comfort places to try to quell the anxiety that is building inside of him, this town surely has no escalators. It has one mall, and that mall has no carousel. I think I would have to call in a favor or two to find a friendly place for him to even ride an elevator. Life where his mom was a child is quite different from where he is spending his childhood. Adapting during crisis is a challenge.

Considering the emotional strength it requires to parent him on the road with the physical strength it requires to prep and pack him and then to realize that we would drag ourselves through emotional turmoil to barely be able to visit with loved ones at all, well, it just didn't seem as though traveling was for us. Somewhere along the way, after one excuse or another, we stopped taking him to Gam's and Dave's house.

But, this time, in this given month and this given week...all seemed well. I told him that we were going to see his Gam and Dave, and I don't think that he believed me. My heart ached for the little boy and his family who, at times like this, felt so limited by his challenges.

Fueled by his bright eyes and my promise to make this happen, I hopped into the driver's seat of our van, my husband behind me to take on child duty, and focused on the road and the 8-hour trip ahead of us. The outcome was anybody's guess.

How often do our special children have the opportunity to live life without their labels? Is there ever a time when they can leave their cares and simply just..."be"?

I know that our older son rarely--if ever--can escape the baggage that accompanies his challenges. And yet, this past weekend, he took a road trip. This kid needed a vacation, and he was able to pack his bags and leave his worries behind him.

Along the way to our destination, he stopped and visited old haunts--things that he remembered from trips past. And, when we reached my parents' home, he jumped right out of the car and soon began to search for all the things he remembered to be fun in that house--

The pond...

...and his old lullaby toy.

For the first time in his life, he was not in crisis during a visit. (Thank you modern medicine and his new psychiatrist!) Because of this, he willingly sat at the table with my family to eat, a level of interaction that hasn't before happened.

Having his breakfast with Gam and Dave

With his brother and cousin

For years, I have worked for the day when I could calm his medical needs, remove the state of crisis so that he would be available for us. This trip, his first ever, that happened. I am so happy for him and for all of us who were able to share in it with him.

And, yet, what I learned from the gift of this past weekend, was that he still has autism. (And that's okay). He still doesn't go out to dinner. He doesn't attend soccer games or lounge around the house so that he can enjoy the presence of others. His interests are very different.

I used to think that if I took away his pain, he would want to be around us more.
He didn't. While he wasn't crying in pain and in sadness, and while he wasn't running at top speed to escape any and everything around him, for the most part, he still did not want to do any of the things that most people do.

He wanted to go to Target. He wanted to go to Target ten times in one day. Target, in all of it's predictability, is just plain fun to him.

The mother that I used to be so long ago strove tirelessly to end this child's pain in an effort to cure him so that he could be more like us. Now, I look forward to ending his pain so that we can learn more about who he really is.


  1. Sounds like a fruitful trip, filled with growth for all of you. We'll all be learning more about who he really is.

  2. I'm so glad you were able to make this trip. It may be self-torture, but we try to take a road trip camping with the kids each summer. While it is often painful and exhausting getting them, all their stuff and accommodations, in the end we always look back on these trips fondly.

  3. New Triberr warrior here - I am filled with admiration for your courage and mothering skills.

    You probably don't see it that way, you're just doing what needs to be done.

    I'm glad you were able to make the trip, and that it worked out that well, even if you did have to spend a lot of time at Target.

  4. Hi, Beverly--great picture, btw! Thanks for stopping by and reading. I have to say that road trips have been the one and only area where I have admitted defeat with this child. It seemed an exercise in futility to exhaust us all for no good reason. Oh, the mommy guilt this has played on me. I am so, so, so happy for him and for my family that they all got to experience a trip free of crisis, that they could see him for who he is--even if that meant he didn't really care to be a part of the crowd--and to know that a thriving little boy exists underneath all of those symptoms and behaviors.

    I hope that he gets to experience many more trips like this to see his Gam and Dave and extended family in WV.

    Accidental Expert--you are a bigger person than I. Those crisis trips are rough. I look forward to learning from you!

  5. Beautiful post. Beautiful boys. Beautiful spirit.

  6. Wonderful that he was able to make this trip at his best like that. I loved the pictures - when we've visited my mum, F always loved the old lullaby toy too and at my dad's she sought out the familiar things she remembered. I really enjoyed reading this x