Today’s Our Land Series post was authored by the incredible mama bear Beth Siebert. Beth is a wealth of knowledge on special needs and on the rights that all of our superhero kids have. She’s involved in advocacy, is amazingly up-to-date on the legal aspects of raising a child who requires support and specialized medical treatment, and is a woman that I’m proud to call my friend. Today, she’s thanking a wonderful group of people who help her to get the best care for her son Alex.
Our Land: Our Skies – Love and Acceptance at 5000 Feet
When I read Our Land, I want to include Our Skies as well. When you look toward the heavens, know that an Angel Flight Mission has flown above you today and every day. How do I know?
My son, Alex, was born with a very rare disease which requires speciality care only available 200 + hundred miles north of us. We’ve spent the majority of his life on planes, trains, and in automobiles in pursuit of care for him. This has been expensive, time consuming, and destructive to our lives. We started flying right after 9/11 on commercial jets from Florida to Ohio, where Alex was first treated.
Luckily, there is now a hospital in Florida that is able treat him. Unfortunately, it’s 200 hundred miles from us, which means a very draining four-hour car trip each way. It feels as if we’re always traveling and it’s been hard to maintain friendships. Friends simply can not relate, although I know they try.
After 13 1/2 years, of traveling, we discovered The Air Charity Network (known here in Florida as Angel Flight). It is a charity of the most fantastically accepting and generous people I have ever met in my life. Pilots volunteer their time and aircraft to pick up patients and their parent who need a flight to a far away medical facility.
We had a bit of a glitch and thought we’d not be able to utilize these incredible services. Not only does my son have a very rare medical disorder, he has severe autism and is non-verbal. In order to fly, you need to get medical clearance from a pediatrician. In Alex’s case, it required that two doctors give him clearance to fly.
Rather than dismissing us, Angel Flight contacted their medical director, who cleared my son stating, “There was no medical reason Alex could not fly.” It is true the the cockpit in general aviation aircraft are a sensory integration nightmare but the understanding and caring the pilots showed Alex gave us a great deal of confidence for our mission.
All of the pilots understand medically needy children and autism. They are such positive, caring people who are so calm that it soothed Alex. Alex actually touched the back of the pilot’s chair and was very interested in everything they were doing.
I am not going to lie. Waiting on the Tarmac for take off clearance is hot in Florida, even early in the morning. It is loud in the cockpit. Taking off in a general aviation aircraft is a bit different than in a commercial jet. Alex was frightened on the first take off. He grabbed me and remembered that he loves me. He actually loved me more than Lady Gaga for that first take off. Of course, once we were in the air and had leveled off, Lady Gaga was the love of his life again.
In The Air
Once leveled off if in the morning it is a very smooth ride. Loud but smooth. Alex loved being amongst the clouds. Each pilot we had explained the aircraft and as much as they could about aviation while flying the plane. Unfortunately, Alex will not wear the headset so the education is all for me but I enjoy it. On one of our flights, we were actually allowed to fly over Disney World which is restricted airspace. There was a strong head wind and a lot of the planes were jockeying for position with air traffic control. Since we were an Angel Flight we actually got to fly over Disney which was an awesome experience since that is probably as close to Disney as my son will ever get.
Afternoon flights are more turbulent because of the heat. Everyone reacts differently to turbulence. Alex sleeps through it as it is like a rocking ship to him.
Clouds are difficult for Alex because we are blind in them. The third mission the pilot actually landed the plane through a cloud blind. It was a master landing. For the most part they are bumpy, blinding and benign.
Upon each landing, I am extraordinarily humbled by the generosity of the pilots, their love and acceptance of my son, and struck with a bit of sadness to see them take off again. Our Land does begin in our hearts, but those skies belong to the generous pilots who love and accept everyone. They take time out of their lives to provide a service to those in need of help without prejudice but with enlightenment, enthusiasm and generosity. So while I am glad it is Our Land, I must say we own the skies with the generous pilots of Angel Flight (1-352-326-0761, www.angelflightse.org).
All of the pilots are so conscientious. If they get sick they may have to drop the flight which is for everyone’s safety. This happened to us as well but we were lucky enough to have wonderful Captain Harvey pick up the flight. In the event it does happen to you I suggest that you know your fixed operating base (FOB) car rental agencies at your departure and destination. A one way rental is not that expensive. I was looking at spending $40 + gasoline.**
I want to thank Angel Flight and AirCharityNetwork.org (1-877-621-7177*) for their commitment to helping children in need, and for their love, generosity and acceptance. Actually everyone in aviation seems to be Angels to children with special needs. And of course, my very special friend and advocate, Kristi R. Campbell, who was willing to publish this article on her blog so other parents can utilize this service. It is Our Land but those are Our Skies too! Next time you look at them, look for the Angels flying children with complex medical needs and know all exceptionalities are welcome.
*This number routes parents of children of complex medical needs to the Angel Flight/AirCharity in their area
**Services are contingent on pilot and plane availability, which neither of these charities have control over. For instance, a child with CP who utilizes a wheelchair for movement would not be able to walk up on the winged aircraft. If only pilots of aircrafts were available which required walking up on the wing there would not be a flight available. Some children with autism would not necessarily fare well in a general aviation aircraft as I know many adults who would be very airsick. Great charity and wonderful service but there are specific requirements of general aviation which the child and parent must meet.
See? I told you she’s amazing. Here’s a bit more about her:
Elizabeth Siebert has a Master’s in Special Education and is a researcher in Verbal Behavior. She also happens to have a son with two exceptionally rare diseases. One is named Mitochondrial Cytopathy in which he was not expected to live past the age of two with. The other is a very rare form of Autism known as Landau Kleffner Syndrome which approximately 201 individuals internationally have been diagnosed with since the 1950(s).
Elizabeth has dedicated her life, as all Mothers do, to rearing a happy, healthy child but unfortunately she lives in an area of Florida which medical services, therapies and respite are non-existent. Therefore Elizabeth and her son, Alex, spend the majority of their lives traveling to get even basic medical care for Alex.
Here are some of her articles:
Five Kindest Things You Can Say to a Child with Autism
Home Schooling Children with Medical Complexities and Autism
Caring for Children with Attention Deficit Hyperactivity Disorder
Mitochondrial Disease Awareness Week
Effective Speech Interventions for Children with Autism