The scene playing out behind me captures a portrait of what our family is – Muslim, American, autism, multi-generational, nuclear, supportive, tolerant, innovative, and just a little crazy. Amal is up in the loft, reading a Roald Dahl book. Dadabba (the children’s paternal grandfather) has his topee on and is reading the Quran. Dadima (paternal grandmother) is lying down and resting. Hamza is playing with his cars, husband is driving the rig, and I am co-piloting. Lil D? He’s got two pillows tucked under each arm, beads twirling around a toy drumstick and a little piece of sesame candy upon which he is strongly tapping his fingers.
This is our new mode of travel – Ali family style – where everyone can go together, where all diets and sensory obligations and need for space are accommodated to the best of our abilities, and most importantly, where we have a space that Lil D can retreat to when the need arises.
We are vacationing RV style.
If you had told me several months ago that we would be spending our Thanksgiving vacation driving a 28-30 foot recreational vehicle plastered with RV advertisements to Florida, I would’ve said, “Yeah right. On what planet?” (Or something hopefully more clever than that.)
But part of being us, part of being in a family dictated by the needs of seven very different people all governed by the challenges of autism is that you have to think outside the box – way outside — to be able to do things that come easy to so many other families. We have accepted our fractured family syndrome and challenged many limitations that come with Lil D’s special needs. And, we have tried to seek God’s help and guidance while being accepting of what He lays forth for us along the way.
The Lead Up
Several weeks ago my husband and I sat together and discussed what to do about Thanksgiving. He had the week off, and he was in the mood to vacation somewhere – not visit the few “safe” family homes we tend to go to when we want to travel with Lil D. We weighed our options. Husband wanted and deserved a vacation. Relatively stress-free vacations with Lil D are virtually impossible.
Do we leave Lil D at home with his grandparents? I didn’t want to do that, having left him behind several times recently when we traveled for weddings or other functions. If this was going to be a non-family, non-function vacation, then I wanted Lil D to be part of it. But I also wanted to respect the husband’s needs for fun and relaxation.
Then there are my in-laws. So many times they have watched out for Lil D at home. This summer we experienced the loss of several family members on both my mother-in-law’s and father-in-law’s (as well as in my) side of the family. It really brought to light how precious our time is together. As we sat across from each other that night, I listened to my husband express his frustration – I want a vacation. I don’t want to leave anyone behind. I want to make memories with our kids and my parents. I want us all to have fun.How the heck to do we do all that? It’s seemingly impossible. Flying anywhere is pretty expensive, not to mention hotel costs. Lil D has special dietary needs, and as we all stick to a halal/zabiha Muslim diet, so that makes eating out a challenge. For my husband, our younger two kids and me, we can manage. But it gets hard for my in-laws, and virtually impossible for Lil D. Then there are all of Lil D’s autism needs: his routine, his sensory input and output, his tolerance and intolerance of various situations based on the crowd, noise, smells, lights, not to mention his own widely varying moods. And, the small fact that the only place he has fun is the beach. The beach in November? That’s a long haul.
You may have heard me mention self-injurious behavior in the past. Though it is less now due to our stringent medical and behavioral interventions, it still is very much there. Last year, before the SiBs got really bad, we actually traveled as a family (minus the in-laws, who were in India) via airplane to Texas to visit my brother. That was some adventure. I’m so thankful to know that we did it, and hopefully we may be able to do it again.
But since that trip, things drastically changed in the Ali household with Lil D’s autism. That happens when you have a child with special needs – things change all the time. Paradigms shift, new world orders are established and reestablished, and you have to roll with the punches and figure things out.
So there we were, with a vacation coming up, and it seemed way more of a problem than a blessing. How pitiful is that? But there it is – where vacations and time off from school are problems to manage rather than time off from responsibilities to enjoy. I’m sure many families familiar with autism will understand what I’m saying here.
A few days after that conversation, my husband sent me a text. Remember how we joked about driving an RV across country? Let’s do it. Let’s get an RV and drive to Florida, where it’ll be warm enough in Thanksgiving to hit the beach. We’ll have our own little home on wheels, a bathroom, shower, and kitchenette!
So here we are, day two of our grand adventure. Seven people determined to do this thing called family togetherness. Three days spent cooking and freezing, umpteen lists made, all medicines checked and double checked, bedding and weighted blankets packed, beach items in tow. We’re in a RV about 30 feet long, and there’s no escaping from each other. It isn’t perfect (yes, meltdowns have occurred), but we are doing this.
Two bearded men, one woman in a headscarf, a grandmother in traditional Indian clothing, three rambunctious kids, and our third wheel – autism. RV trailer parks, campgrounds, beach sites, generators, water and electrical hookups and sewage pipes.
By God, fun will be had. And we shall be thankful.