12.22.2009

Five Sets of Wings

Today we will be flying as a family quintet for the first time since the Can I Sit With You? Annex Theatre show in April, 2008. We will be staying with Seymour's parents as a family for the first time since Thanksgiving 2007.

I am nervous. I am cautiously optimistic. I have packed the full arsenal of Leo-happiness triggers. I am open to suggestions from anyone who knows about good activities for kids on the spectrum in beautiful Las Vegas.

Nervousness: Leo's been doing less well than his almost beatific well of 2009's January through November. He was still doing reasonably well when December started, so we decided to take a chance on a full-family trip (the kind where Mali doesn't have to ask, "Is Mommy coming too?").

It seemed like Leo's behaviors spiraled downward the day after we booked and paid for our flight. He started being fidgety, loud, and doing a lot of rapid-fire and ceaseless raspberries whenever he's seated. I didn't really notice this until Rook and I took our four kids to see Fantastic Mr. Fox, and Leo's noises and behaviors drew looks from other members of the audience.

He's also started to bust out with occasional hopping flailing octopus episodes where he decides that the best way to inform me that he dislikes an activity or wants to get my attention is to thwack me as fast and as many times as he can. At home I back away and tell him NO very loudly and firmly; in public places like post offices I have to keep ahold of him lest he bolts, and get pummeled.

I really, really hope his spitting and pummeling don't happen on the airplane or in the airport. But just in case, I am carrying a copy of the U.S. Department of Transportation's Nondiscrimination on the Basis of Disability in Air Travel (note: PDF) and will wave the following excerpt under the nose of anyone who complains about Leo's behaviors:
§ 382.31 Refusal of transportation.
    (a) Unless specifically permitted by a provision of this part, a carrier shall not refuse to provide transportation to a qualified  individual with a disability on the basis of his  or her disability.
    (b) A carrier shall not refuse to provide transportation to a qualified individual with a  disability solely because the person’s disability results in appearance or involuntary  behavior that may offend, annoy, or  inconvenience crewmembers or other passengers. 
This is not a preemptive #suckit for the other passengers; it's a way of guarding Leo's rights. Air travel means playing a lottery in reverse: usually you'll win, but sometimes you lose and get stuck near a crying baby or a kid like my son, neither of whom are responsible for their behavior, both of whom are likely in great distress,  each of whom have as much right to be on the plane as you do -- and who are  accompanied by freaked-out adults doing their best to calm the kids down, because we so do not want to piss off an entire planeful of people.

** Deep breaths. Not hyperventilating.**

On the cautiously optimistic side, he's using a lot of great language. Some of it makes us really sad; he enjoys thinking and processing and reciting items in pairs, and has a hard time mentally adjusting when we tell him that some of his favorite pairs of people are no more, like Jo Spanglemonkey and Manny, or my mom and dearly missed dad. He then goes over the pairs again, looking at us quizzically, as we remind him yet again that Pepere isn't here anymore.

He's also starting to verbalize whether people are present or not. The same sadness applies when he keeps insisting, "Grandma is at home. Pepere is AT HOME," and I have to tell him, again, that Pepere isn't here anymore (I don't know that "dead" makes any sense for him). Although I do appreciate his growing ability to recognize when house guests are no longer staying with us, e.g., "Badger is at home! Moomin is at home!" Those wheels are turning.

I hope his continuously expanding language skills and love for his grandparents (and their love for him) factor into a good, or at least a manageable, visit. We used to be quite the traveling family, and Leo used to be quite the traveling boy. Every single one of those trips was to visit or travel with family and friends. Leo usually loves being in airports and flying on planes. I'd like to see us inch back towards the traveling lifestyle that our sweet, social boy deserves -- but only if he can tolerate it, only if he wants to.  This trip will be telling.

7 comments:

  1. Know he can do it! Thinking of all of you---whatever travel gods I was going to pray to for us on our now-cancelled trip, am asking that they fly with you.

    (Mercury/Hermes himself is the god of travelers.)

    ReplyDelete
  2. Well, you DO know that all your peeps are pulling for a safe and successful trip, right? :)

    ReplyDelete
  3. hope it goes well. we've only tried car travel with T, but there's an amusement park for persons with disabilities going up in San Antonio, and my plan is that's a real good excuse to try and save up for a trip back to where I grew up, because it will give us something fun to do as a family. I'm thinking, if we do go, I might have my husband and daughters take a plane, and I'll take a train with the boy, but he's pretty good in a car, and on the bus, so maybe a plane trip would be fine (he is not sensory sensitive, but sensory seeking, but he can still go into overload).

    ReplyDelete
  4. He can come see us soon and he might like a boat ride in the dinghy! (Once it's cleaned up and the weather doesn't suck)

    ReplyDelete
  5. Does it make sense to notify the flight staff in advance that he has autism? I often wonder this when traveling w/my son. He has Asperger's and Tourette's, and the Tourette's would be the more likely issue for us on a flight, but I can never decide if it's better to bring it to their attention so they can potentially discriminate vs. let it be and address it if the need arises.

    ReplyDelete
  6. @califmom I said nothing except to the gate staff to get early boarding so we didn't have to deal with the sensory-overloading boarding herd. Onboard he was angelic, not an issue for us. But if he had been, I had (again) my rights as excerpted above and my best don't-you-fuck-with-my-kid face at the ready.

    @liz we can't wait. New year!

    @Navi GO!

    @Beth dreaming dreams for you and your family.

    @kristina do we need ten sets of wings then? (One set for each ankle?) My hope is that the travel magic we're using on this trip then transfers to you and Beth.

    ReplyDelete
  7. I clicked on the link from Twitter and was thinking "Oh noes, she's dragging her kid someplace and trying to force him to behave." But it sounds like your main concern is for your child's easily-frayed nerves. I wish you luck, and I hope that this trip goes well for the both of you.

    ReplyDelete

Respectful disagreement encouraged.

Related Posts with Thumbnails