Finding Ninee » Sharing our parenting and special needs stories with heart and humor.

Our Land: Our Skies – Love and Acceptance at 5000 Feet

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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.

Co-pilot Bill Doty and Pilot Bob Wall

Co-pilot Bill Doty and Pilot Bob Wall

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.

Beth and her son Alex on an Angel Flight

Beth and her son Alex on an Angel Flight

Take Off

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.

Captain George Robbins with Alex Angel Flight

Captain George Robbins with Alex

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.

Captain Harvey Gutwein

Captain Harvey Gutwein

Landing 

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).

Pilots

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.

thank you angel flight

*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:

Beth SiebertElizabeth 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


  • Elizabeth Siebert - Kristi thank you for being the incredible advocate, friend and awesome writer/ editor who made this article shine and sparkle. You make diamonds from coal with your love and inner beauty and inspire all of us to be better people, parents, advocates and writers. Thank you!April 27, 2015 – 10:58 pmReplyCancel

    • Kristi Campbell - Aw you – it was YOUR words that gave this essay truth and beauty and heart and I thank you so so much for allowing me to publish this in Our Land. You’re an amazing mama and you and Alex are going to help so many families!!! Thank you!April 27, 2015 – 11:06 pmReplyCancel

  • Shay from Trashy Blog - This is completely awesome. True angels, for sure!April 27, 2015 – 11:58 pmReplyCancel

  • Kerri - My friend’s dad is a pilot for Angel Flight in New England. He is a retired HUGE airline commercial pilot and feels that doing this is the best way to spend his retirement. Not only does he get to meet some great kids, he gets to share his love of the skies with him. I’m so glad, Beth, that your son gets to meet these incredible men & women.April 28, 2015 – 10:03 amReplyCancel

    • Kristi Campbell - Really Kerri? That’s so awesome. I’d never heard of it before Beth told me about it!April 28, 2015 – 7:41 pmReplyCancel

    • Beth Siebert - Hi Kerri,

      Lovely to meet you. You are so right about the Angel Flight people. They are all INCREDIBLE! Just the most sage people in the world. Their love of aviation and children with exceptional healthcare and all exceptionalities is so incredibly humbling and endearing. Thank you for reading my article (Actually Kristi gets billing here because she helped me a lot and provided the forum for all people to come together a celebrate love and acceptance of every diversity.). It is humbling to be a recipient of Angel Flight but then to get to share this wonderful experience ion Kristi’s blog is a wonderful experience as well plus I got to meet you! Thank you!April 28, 2015 – 7:44 pmReplyCancel

  • Pattie - What a wonderful gift these pilots give to their guests! Thank you for sharing this Kristi (you are always the bestest ever)and Beth, as I am sure like me, many people don’t know about Angel Flights. I hope that more people who can benefit from this wonderful service will see this post. Lots of love to both of you!April 28, 2015 – 3:21 pmReplyCancel

    • Kristi Campbell - Pattie,
      HI! And thank you so much for coming – I’d never heard of them either and so hope that people will know they have options for traveling to medical appointments when needed!April 28, 2015 – 7:42 pmReplyCancel

    • Beth Siebert - Hi Pattie,

      I’d have to agree with you Kristi is the best ever as ai would have never had the courage or forum to publish this story without her, She helped me a lot!!

      The pilots have all been incredible human beings and very diverse, I knew about this air charity but was very reluctant until I meet our first set of pilots. Those guys were such pros the flight was smoother then had it been a. commercial airliner.

      The other pilots have all been brilliant as well. It is a great experience too because I am teaching my son about general aviation as we fly in different airplanes.

      It is very nice to meet you as well and thank you for reading our story. From your lips to God’s ears that this blog article helps other families. The Air Charity Network aka Angel Flight organization and pilots could not be appreciated more by us. Thank you for leaving a comment.April 28, 2015 – 7:56 pmReplyCancel

  • Emily - Wow, what an incredible charity and organization…I had never heard of this before, but I’m so glad it is available for families like yours who truly can benefit from it. Thank you for sharing this with us!April 28, 2015 – 3:57 pmReplyCancel

    • Kristi Campbell - I agree, Emily! I’d never heard of them! So glad they’re there, and think “I want to do something like that when I retire!” (but don’t know how to fly – something like that though)April 28, 2015 – 7:43 pmReplyCancel

      • Beth Siebert - Never too late to learn to fly Kristi but what you do here is so important and helps so many families. I think you have found your calling, Flying for you can be a hobby.April 28, 2015 – 7:58 pmReplyCancel

    • Beth Siebert - Hi Emily,

      Thank you for commenting and it is nice to meet you. It is a tremendous benefit for us physically, emotionally and spiritually.

      First, it cuts the trips down from eight hours of driving to approximately two hours of flying. My son’s mitochondrial cytopathy is characterized by extremely low energy. For him to travel for eight hours in a car is exhausting but up in a plane for two hours and he is feeling great physically.

      Second, the pilots are such wonderful positive people. If Kristi ever lets me write again for this site (I require a lot of help from her so I wouldn’t blame her if she wanted a more seasoned talented writer.). I will share a story of one of the pilots whose daughter was born into the same NICU as Alex. Quite literally, we lived at the same hospital for a month together, in the same room, both praying our respective children would make it. Both children survived and he flies Angel Flight missions now in his spare time. The pilots are just so loving and accepting. It is such a positive emotional experience. You literally feel like you are in the hands of one of God’s Angels (Sorry so sappy but true.). So it is a very emotionally supportive experience.

      Third, just flying in the heavens is a very spiritual experience for me. You look down to the Earth and problems seem so tiny and the heavens vast, open, inviting to everyone who surveys them. It is almost a religious experience for me. There is also the rocking of the plane which makes some people airsick but for me it reminds me of being in the rocking chair holding Alex. Reminds Alex of it too because he often falls a sleep.

      Thank you for commenting and allowing me to share this awesome experience with you,April 28, 2015 – 8:13 pmReplyCancel

  • Allie - I have never heard of a doctor needing to sign off on flying? Is that because of the rare form of Autism that Alex has – or his other condition? I’ve taken my son up in the air a few times and it never occurred to me to clear it with his doctor. Uh-oh…April 29, 2015 – 7:34 amReplyCancel

  • Beth Siebert - Hi Allie,

    Great question!!!

    The medical clearance is because my son has severe medical complexities. I believe it is Angel Flight policy but do not quote me and I have had to get a medical clearance for my son to fly commercial when he was younger and more medically fragile so I could administer medicine in flight which was challenging when TSA had the “no liquid” rule. Fortunately, TSA worked with me, once I had medical clearances, and I could carry medicines, breast milk, etc.

    If your son does not requires medication administration and no one has asked then your are probably fine.

    Thanks for leaving the question and I bet your son loves flying in the heavens as much as Alex.April 29, 2015 – 10:53 amReplyCancel

  • Tamara - Wow, Angel Flights is the perfect name for this.
    I love that he sleeps through the bumpiness. I think I might too, if I were a less anxious flyer. Anxiety often has me tossing and turning or rocking a bit, at least when I was younger, so it would probably soothe me.April 29, 2015 – 11:45 amReplyCancel

    • Beth Siebert - It is very calming like a rocking chair. You’d probably love it if you needed the service. Besides the pilots are so calm cool and collected you’d leave your anxiety on the Tarmac upon take off.April 29, 2015 – 1:55 pmReplyCancel

  • Elizabeth - This is incredible! I love this story, its grace and compassion and practical problem solving. Thank you for sharing it!April 29, 2015 – 1:40 pmReplyCancel

    • Beth Siebert - It is a very wonderful loving charity. Thank you for reading and commenting but to be clear none of this would have been possible without the awesome advocate Kristi Rieger Campbell who took made my work shine and provided a forum for me to share our story. Thanks to Angel Flight, thanks to you for reading and commenting and thank you Kristi R. Campbell who unites us all with her huge fantastically loving and accepting heart.April 29, 2015 – 2:02 pmReplyCancel

  • Kenya G. Johnson - Downgraded from Lady GaGa. Too cute. Air Charity Network is a wonderful organization that I hadn’t heard of before. I am glad to hear they in addition to taking patients on these flights that they are also genuinely caring people.May 1, 2015 – 6:30 amReplyCancel

    • Beth Siebert - Hello Kenya,

      It is true. My son’s heart belongs to Lady Gaga. She has reach! Although on take off and landing in the plane, when he is a little frightened, he remembers he loves his dear old Mum. He grabs me and hugs me.

      Air Charity Network also know as Angel Flight love their passengers. Everyone at Angel Flight I have met is super generous, kind hearted and sensitive. It is one of the most charitable organization I have encountered. Angel Flight is awesome.

      Thank you reading our story and leaving a comment.May 1, 2015 – 8:33 amReplyCancel

  • Roshni AaMom - What an incredible, amazing service these Angels perform!May 1, 2015 – 9:33 pmReplyCancel

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