Traveling with Special Needs

It's Christmas time. It's the time of year my internal clock insists that I MUST take my special little family to West Virginia so that the boys can spend time with my parents, their uncles, cousins and maybe their visiting aunt. My aunt is there. Heck, all of my family is there. I used to travel there monthly in the early days. Then, fatigue gave way to the tantrums and lack of understanding of our older son as we traveled and he did nothing but cry, scream, and never, ever sleep.

For a couple years, I didn't take our older son. Boy, did I feel like the worst mom in the world. There I was, in the center of half of his family, watching his little brother--then undiagnosed--soaking up all the attention while I knew he was at home. He was at home KNOWING where I was. He had even ASKED to come with me. Yet, knowing how hard it was to travel with him, I had sneaked out of town like a coward.

"Mama and Will are going to visit with friends." I said to him, as I arranged the sentence in picture symbols on a simple calendar for him. I know he knew where I was going. Always, at the last minute, I would wonder, could we do it? Could I pack the special food? The pots and pans? The compounded medications on ice? The other medications? The special soaps and creams? His diapers and extra pjs because he wets the bed? The extra clothes for toileting accidents? The clothes? The comfort items? The communication boards? His dynavox? Special blankets? Special everything?

Did I have it in me to do all this and still manage his sleepless nights in a sleepy town with no 24 hour stores. No carousels. No escalators.

Did I have it in me to do all this and still manage his anxiety?

Most important, did I have it in me to be a super mom but then also a super daughter/aunt/sister/niece? For, in the moments of caring for a child with special needs when one is traveling, there is an audience of extended family members who have been there with us, in the periphery, but who don't understand the nuances. Some of the people---the kids---I worked to shield from the ugliness of this life. But, when on their turf, one can't really gloss things over as well.

How do you explain to kids that you lock your child into the room at night?

How do you explain to them that your older child still wears diapers at night?

Our family is learning to face these issues with time and maturity. However, in the early days, the details were emotional and everwhelming. For a brief time, my solution was to avoid them.

This year for Christmas, I brought my entire family to my childhood home in West Virginia. We had visited not too long ago in the autumn with great success. Our older son is have a remarkable year. I was hopeful.

On the road of special needs, I have learned that it is a mistake to have too much hope. I think that cautious optimism would be better. However, I am a mother, and my children are my weakness.

My parents have acquired two dogs since our last visit, and it just so happens that our older son has acquired within the year an extreme fear of dogs. I knew within the first minute of our arrival to my parents' home that this arrangement was not going to be pleasant.

And, for the record, I must add that these two dogs are beautiful. They hardly bark. They didn't jump on him. Really, their only problem was the fact that, well, they were dogs.

He spent zero time in the home that evening, and his anxiety spilled into a sleepless night. For those that don't understand, it is incredibly difficult to contain a sleepless child in a home where people actually sleep at night.

There I was, lying on the floor of my sister's former bedroom, across the doorway so that our son did not escape, pondering the question: Is the saying true that we can never really go back home? That long night, as I processed my disappointment in our son's response to his arrival, I realized that I was also processing another disappointment, and that was the loss of my ability to come home to my family as I once did, to celebrate holidays as I once did--to do ANYTHING with them as I once did.

Look, I was attempting to sleep on the floor. I needed to face facts. I was no longer a daughter. I was a mom, a special needs mom with one kid flipping out over the dogs sleeping one floor below. And, let's face it, even without our older son in the picture, our younger son visiting West Virginia is no walk in the park. In fact, he is a massive case of ADHD and autism on wheels running through his environment and turning it on its ear. Those who stick with him are usually family, and that's just a labor of love. He spits. He growls like an animal and he exhibits no social skills at all. Bless his heart. He's so happy to be there. I'm thankful that they all understand that he is a work in progress.

Soooo, that all being said, I decided that I needed to clear my mental hurdles.
When traveling with special needs, I think one needs to expect discomfort to be the norm. If along this path of discomfort one manages to eek out some moments of fun, or, if lucky, see a glimpse of brilliance, then it is all worth it.

Holiday road trips are about planting seeds--theirs, not mine. Mine were planted long ago. My job isn't to create the same garden for them but to give them pieces of mine from which to make their own.

I haven't quite figure out how to do that yet, but I have a year to work on it.

Happy New Year, Everyone!