Saturday, December 31, 2011

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!


  1. i appreciate your honest thoughts, feeling, and stories about how you manage your lifestyle.

    amy, i hope the new year brings you new ways to share the seeds. ways that will help your boys grow, as well as helping you. to continue to be the best mom. the kind of mom you hope for.


  2. Thank you for continuing to stop by, comment and support. Really, overall, I think our family is doing well with this challenge in life. But I do want to share my honest thoughts because I'm sure that there are others out there who have them. Reality is,life is a struggle for us all when special needs enters the picture. We'll figure it out.

  3. So all this talk of accepting the responsibilities of life as they come....that's just for you right?
    No? Just for women then?
    No. I suppose then, that it is incumbent on all of us to actually do, and even embrace, as you are exemplifying, the good burdens we carry for the sake of others.

    The blessing of joy comes later. As Jesus went to the cross "for the joy that was set before Him", and was given the joy after the good work was done. Your joy will be great, as your work is done for Him.

  4. Wishing you a great new year filled with little successes along the way. I love you Amy and I love how much you love those baby boys. You are truly inspirational even though you always maintain your realness. Big hugs and a boatload of love!

  5. Wishing you all the best for 2012, with more breakthroughs and less desperate times and disappointments. And my selfish hope is that you will always continue writing as you do, honestly and freely, always increasing people's understanding as you go.

  6. I don't have much extended family, so I have no idea what it must be like to travel and have to try to lead as normal (normal for you) of an existence on a different playing field. It must be hard (understatement, I'm quite sure) and I admire and respect you for doing it.

  7. Some families manage to travel with their special kids. I think it depends upon the level of disability. With our younger son, we could certainly do more. With our older son, well, it is nearly impossible. Yet, I feel it is our obligation to provide the memories for him. He may not be able to verbalize his desire to travel to all the distant places in his mind, but I know he wants to do this. The trick is making that happen without also taking him too far out of his comfort zone so that we are then dealing with crippling anxiety and endless car trips to every Target along the way. lol. It's a tight rope walk.

  8. Everyone needs a break from their kids now and then and shouldn't feel guilty. I used to work at a respite care home for kids and adults through United Cerebral Palsy. It was a tough job but temporary. I couldn't imagine it being a full time job, so kuddos to anyone raising even one special needs kid.


  9. Amy, you are such an awesome mom and so generous in sharing your "real-life". I know you have to be a tremendous help to so many mothers that follow behind you. I hope 2012 will be a breakthrough year for you and your boys. May you have a blessed New Year!