Wednesday, September 14, 2011

The Journey

Spectrummy Mummy

Our family of four recently moved from the U.S. to South Africa. This isn't our first international move, but traveling with a toddler with sensory issues, and a preschooler with an autism spectrum disorder complicates matters.

Before we left, I referred to our journey as The Flight, and much as it deserved capital letters, it disguised the fact that there were in fact two flights. The first was a tiny domestic flight under two hours, the second being a mammoth fifteen hours. So in my preparations, I concentrated mostly on the big one. I assumed the first flight would be easy. I was wrong.

We'd had a couple of hiccups before boarding. The van that we booked to collect us was late, and we were all waiting in the D.C. summer heat for over half an hour. To say that the kids became irritable doesn't really do it justice.

Going through security was tough for Pudding this time. She refused to let her doll be subjected to the X-ray machines, then became anxious of the (male) security guard. Fortunately we'd chosen the special screening area and there were hardly any other passengers around to add to her distress.

We pre-boarded, and I retrieved one of the Flying Fairy's wrapped up gifts: a pad of paper and markers. She was delighted, and began to draw. She drew the best rainbow yet, along with a few other sketches. I was pleasantly surprised at how well the gift occupied her.

Once we were airborne, the attendant came around offering a drink, and we pulled down the tray for the first time. When she finished her water, she moved her pad to the tray and continued drawing. She drew a train "for Cubby," and then a princess. The princess' gown needed dots.

She raised her hand and with too much force brought it to the paper. I quickly told her it was too hard, and held her hand to help her gauge the amount of force required. But this wasn't a teaching moment for our heroine. She was incapable of changing her motor action, and again and again she raised her arm for more dots.

The woman in front turned around and told Pudding to stop kicking her chair. Pudding's legs had not moved until that point, but when she feels threatened she reacts violently. Pudding was scared by the tone of the lady's voice. I knew the legs were going to kick from that point on.

The woman continued staring at Pudding, waiting for her response. She would have waited a long time. I apologized, and explained that my daughter has special needs and may not have understood. This was not acceptable. So Spectrummy Daddy and I avowed that we would do our best to prevent Pudding from disturbing her peace.

Of course, now that Pudding was ruffled, preventing her from disturbing the peace was easier said than done. Though I managed to prevent her from touching the seat in front by holding her hands and legs, she became very vocal (and loud) in her discontent.

The woman and her husband continued to turn around, give us "the look" and sigh, but I resolved not to make the situation any worse. Still, every stare was a challenge to Pudding. The more they turned around, the worse her behavior became. She was desperate to get off the flight. So was I.

Loud as Pudding was, we've seen much worse in other children. Evidently the couple in front had not. I've had my seat kicked for the entire duration of a flight, and I don't think that drawing dots on paper really compares. They complained to each other for the remainder of the flight, making sure it was loud enough for us to hear. I became particularly rattled when the woman wondered aloud why "they are allowed to fly."

How I wanted to scream at her! Who shouldn't fly? People with autism? Any special needs? Children in general? Who are "they"? Just anybody who is not the same as me?

But when Pudding is worked up, I don't have the luxury of rage. My only job is to comfort her, because the last thing we all needed on that flight was a meltdown, and we were getting perilously close.

Pudding eventually calmed, and returned to drawing. Her storm had passed, but mine still raged on. The lady became air sick, and I felt my first stirrings of compassion. It is bad enough feeling sick without being disturbed. I was glad Pudding was preoccupied at that time, she tends to repeat that somebody is sick over and over. There is nothing worse, let me tell you, if in fact you are sick at the same time she is pointing it out, ad nauseum.

Soon it was time for the final descent. The husband called for a flight attendant, wanting to know where he would be able to collect his wife's wheelchair. The attendant explained that they could wait until everybody had disembarked and it would be brought to the cabin door. Instead the wife opted to get off at the same time as everybody else and walk on her crutches.

Her husband moved on ahead quickly (presumably to collect the wheelchair) as the wife moved slowly and painfully through the tunnel to the terminal. Spectrummy Daddy had waited behind to collect our stroller (push chair) and I followed directly behind the lady with Cubby and Pudding.

With her two crutches, there was no room for other passengers to pass. Now I felt for her. Others were trying to get by, in a rush to leave the airport or make their onward connection. Once she had started there was no way to change her mind. She had to keep going until she reached the terminal, no doubt feeling the humiliation of a body that can't do as she wishes.

Behind me I could hear others becoming impatient. Maybe some were thinking that she shouldn't have been allowed to fly, much as she had said a little while earlier about Pudding. This woman's disability had been hidden while she was seated on the plane, no wheelchair or crutches in sight. Pudding's disability is hidden all the time. Sometimes her autism can inconvenience others, but never as much as it causes difficulties for my girl. This lady and Pudding have more in common than she would ever have realized.

I was still angry, and scared of the impending fifteen-plus hour flight. I needed a drink to calm my tempest. We made our way to the next terminal, and found a coffee shop. After a short while, the couple arrived and sat a few tables away from us. This lady who had seemed so formidable an hour earlier now looked elderly, frail, and beaten by her efforts. Pudding, no longer hyperactive, looked tired and defeated too.

We're on the same journey, and yet finding it so hard to really see those traveling with us.

Our table was right next to a piano, and a gentleman arrived to perform. The kids were pleasantly distracted by his music, and before long, I was too. I noticed something around his neck, and realized he was wearing an autism awareness lanyard, and I almost cried. In recognition, relief, solidarity ... I don't know what. When it was time to go to our gate, I gave him the remaining dollars I had left in my purse and thanked him, not just for the music.

And you know, the second flight was better than I'd anticipated. A passenger even apologized to me for disturbing Pudding when she had fallen asleep. We made it.  It was all worth it.

This can be a Hell of a journey, but it eases considerably knowing that we don't travel it alone.