A Mother’s Open–Letter to The Arc About Wings for Autism

Dear Sarah,

I am writing to express my continued gratitude for the Wings For Autism event held in Anchorage, Alaska.

Jack and his cat

Jack and his cat

Our 11 year old son Jack experiences high functioning autism, which he was diagnosed with at four years of age.  While Jack did fly at ages 5 months and 9 months respectively, in his memory he has never been on an airplane, which raised concerns for us, since we have scheduled air-travel this summer.

The Wings for Autism experience was far beyond any of our expectations (our family of 4 attended).  The attention to detail, real life/real time airport experience of obtaining tickets, line waiting, Transportation Security Administration (TSA), airport exploring, more waiting at the gate; it was all so needed, and so appreciated.  The time on the aircraft was more than we could have ever hoped for, between the taxiing and “cruising altitude” beverage/snack service, the crew going through their regular motions/speeches and the pilots coaching us through the sounds and motions of the aircraft… truly exemplary.  To add to this, the generosity of all of the hands at play, from the folks getting us through the lines, to the TSA, to the airport staff, to ground crew, to the flight staff and of course the pilots, The Arc of Anchorage, Ted Stevens International Airport for handling the logistics and security of a “mock” boarding and flight on their active airstrip, not to mention all of the volunteers and hours/dollars funneled into this event is staggering and to know that this was all done for our kids, our families to have a better experience, well, it is so humbling and overwhelming to me it makes me want to cry.

Thank you.

As for our Jack, he struggled.  And it couldn’t have been a better place, better environment, FOR him to struggle.  It gave me a good glimpse of what I might see and might expect this summer.  Jack did very well for about the first 1 1/2 hour (noon to 1:30), and then he started to lose his patience.  The noises (especially from children), the waiting, the MORE waiting, it set him right to the edge.  (It is worth noting that there are interventions I could have used/will use in the future, but I wanted him to have a “rougher” experience for this practice run so I could really have an accurate view of where I needed to focus for our trip this summer; also, I knew this was the time for him to have it harder, rather than the “real” time.)  When we boarded the aircraft and sat down in his window seat, he began to emotionally shut down.  He started to have what can best be described as a panic attack, breathing fast and clenching his hands, and said he “didn’t like this anymore” and “wanted to get off/leave”.  I told him we could shut the shade on the window, which we did, and I just quietly talked him through it (I figured he would want the window, but next time maybe I’ll seat him elsewhere).  I told him that the best thing we could do was to sit in the uncomfortableness and be uncomfortable, and eventually the anxiety feeling would start to come down.  I reminded him that if we “ran away” from this moment it would only be much worse the next time (I personally have diagnosed Obsessive Compulsive Disorder, and this is true for me; I try and use this approach with Jack as well), and I knew he didn’t want to miss out on travel and experiencing new places like other people.

Jack eventually pulled the shade back up, and about 20 minutes into it, he calmed a bit and smiled, and said he felt better.  He kept wanting reassurance over and over that we weren’t going to take off.  He is terrified of motion sickness and throwing up, and he kept talking to himself about how he’d be okay, and how he probably wouldn’t throw up on the real trip this summer.  He checked out the bathroom as well.  While he never fully relaxed, all in all it went very well.  When it was all said and done, he claimed it was “awesome” and said on a scale of 1-10, it was a 10 :).

Jack still has worries about taking off/landing, and getting sick on the plane.  We will cross those hurdles as they come.  Yet, this experience with Wings For Autism gave us something we normally could never obtain, which was practice in an airport and on a real aircraft.  Who gets to have that?!!  I don’t think I can fully punctuate how important and valuable this experience was to our family and to Jack; all I can say is thank you, and hope it is a program that can be repeated so more families can benefit like we did.

Jack and his brother

Jack and his brother

One thing that all parents keep in their proverbial back pocket, ESPECIALLY families with special needs children, is the ability to leave/exit a situation if needed.  If the event is too stimulating, your child is having a meltdown, the event is too long, there is too much noise, etc., YOU CAN LEAVE.  It is a safety net, and benefits not only your child, but it is also executed in consideration for the people around you.  A plane is probably the ONLY environment in which you CANNOT leave.  You can’t even really move away.  Knowing this certainty can be figuratively paralyzing for the parents; what are you going to do if things go poorly?  All you can do is the best you can, but that one ace-in-the-hole of leaving the situation is off the table.  It is enough to keep some of us from wanting to knowingly put ourselves and our kids in that potential situation.   That is the way it has been for us.  I would be remiss if I did not admit my own anxiety about air travel this summer, but I know it is something we must rise to and experience, and I will do everything I can to support it going as smoothly as possible for both Jack and for those around us.  It is a tall order.  Thanks to Wings For Autism, it is now more attainable.

Special needs, and all the trimmings that come with it, can be difficult, even impossible, to understand.  The good thing is, people don’t need to understand.  On an empirical level, it is too much to even ask.  To raise my expectations and hope for someone else to understand what our life is like, what Jack’s life is like, might be asking something that person cannot give.  However, everyone is capable of giving compassion.  Compassion does not have to in concert with “getting it”; compassion can stand alone.  And when a parent like me or even Jack himself receives a knowing look of compassion, a gesture in kind, a gentle word or nod, an extension of patience, it is such a gift.  That is the empathy that nourishes and gets us through that moment, that hour, that day, or that week.  It satiates in a way that even I cannot express, and it keeps me going.  It keeps Jack going.  And for this, I will always remain truly grateful.

For this opportunity, we remain in your debt.

Warmest Regards,

Katherine