Back Story
Most of our family and friends are aware or vaguely remember that AJ was not command sponsored to join our family overseas on my husband's unique assignment to get his PhD at Oxford University. For those new to the blog and interested in the dirt, please visit my previous blog:
For everyone else, here's a quick summary:
My son has autism spectrum disorder. He was receiving ABA therapy in America by a licensed BCBA. He takes a prescription stimulant for his ADHD and received additional services via a TA in school to accompany his I.E.P.
When we got orders to move to England, our entire family had to go through a filter system to ensure each member of our family could be cared for in our new host country. As you may now understand, AJ was flagged for three reasons:
1.) His prescription is banned in the UK. (not true, he's been on it since we arrived.)
2.) The on-base school could not provide for his needs, and the British school systems were not equipped to handle a child of his particular needs. (LIES!!!!!!) Therefore, we would be doing him a disservice bringing him to a foreign country.
3.) ABA was not available in the UK and not recognised as a treatment for ASD by health standards. (Only half true; Autism is seen as a learning disability in the UK, not a medical diagnosis. The NHS does not recognise ABA as treatment for autism and does not prescribe it or pay for it. Instead, government funding is funnelled through the schools to assist these children, which makes claim #2 almost laughable. There are, however, over 300 BCBA providers in the UK, and patients can opt to pay through private insurance.)
We researched our options and found proficient ways ahead for AJ to thrive once in the UK. We presented our findings in our application and ultimately were denied for reason #2 listed above. When an airman's family member is denied sponsorship, they get exactly one appeal, ONE, to make their case. If a second denial comes in, they are stuck with the outcome.
We decided to appeal the ruling on our son. We contacted a specific school in the area where we would be living and sent our I.E.P to the Special Education Coordinator (SENCO). We had no desire to attend the military elementary school, because it was 45 minutes away; we wanted to live near the university where my husband would be working everyday. The SENCO and headmaster of the receiving school were confident in their ability to meet all of AJ's current needs and were able to provide him with even more support than he initially received in America.
We reached out to the Special Education Office for USAFE in Okinawa, Japan. We requested a memo stating AJ would be excused from attending the on-base school system, because the local primary school was more than sufficient to handle his educational needs. (This is all within protocol mind you. It was never presented to us as an option, but we found the ruling ourselves!) The office was delighted with our findings and was more than happy to put their stamp of approval on our request! We thought we had won.
Two weeks later, we received our official denial paperwork. Now remember, we cannot appeal twice. This time, their reason being that ABA was a limited resource in the UK and not available in his area. We had already found a BCBA that was willing to take on AJ's case. I sent them her name and details in our original proposal. How could this be?
We reached out to the Special Education Office for USAFE in Okinawa, Japan. We requested a memo stating AJ would be excused from attending the on-base school system, because the local primary school was more than sufficient to handle his educational needs. (This is all within protocol mind you. It was never presented to us as an option, but we found the ruling ourselves!) The office was delighted with our findings and was more than happy to put their stamp of approval on our request! We thought we had won.
Two weeks later, we received our official denial paperwork. Now remember, we cannot appeal twice. This time, their reason being that ABA was a limited resource in the UK and not available in his area. We had already found a BCBA that was willing to take on AJ's case. I sent them her name and details in our original proposal. How could this be?
How Do We Move Forward?
We were given three options to proceed:
1. Leave our 6 year old, handicapped son behind for three years with a guardian. (Are you kidding?)
2. We could turn down my husband's full ride scholarship to the number one university in the world for Experimental Psychology. (Who comes up with this stuff?)
3. Aaron could leave for three years and we would be allowed to stay behind. Any travel between countries during his tour would be at our family's expense. (...because kids don't need a dad I guess...)
No one presented us with a fourth option, which was to say, we bring him along. We stay intact as a family and we pursue our original plan to help AJ thrive in country. We paid for his plane ticket and by some miracle, (I know God was watching) we were able to get him on the same flight as us at a quarter of the price of the original ticket cost.
Our original BCBA didn't work out, so I was back to square one on this issue. Our son needed ABA. I went through the BCBA international database and contacted every single person on that list within two hours driving distance (over 100 people) from my house asking if they would be willing to take on our case and become a sponsored tricare in-network provider. (This is the job of the EFMP office, by the way, NOT MINE!) I came across two names that for some reason I had recognised, but I could not recall where I had seen them.
Both of them contacted me back. They were already in the Tricare network and currently serving military members in two of our northern bases. That's where I had seen their names. On the "in network" provider list under non-specified practitioner. Both agreed to work with me and provide AJ ABA services. I interviewed them both and decided to go with Dr. Deborah Carr who is a leading ABA specialist in the UK. Even the other candidate said, "If you have an opportunity to work with Dr. Carr, you have no business asking me to be your therapist. She is the best in the country." That was all I needed to hear.
Her set-up was a bit different though. She wouldn't be administering therapy to AJ. Instead, she would be coming to my house once a week to train me for two hours to administer ABA to AJ. This was a change in routine for sure, but after two years of working with who I feel is the best BCBA in America, I was confident I could handle it! In January of 2017, I became AJ's full-time therapist.
Fast Forward
AJ was tested in June 2018, for his abilities across all domains in his development. His average scores were all within his developmental age range, some even a few months higher. He only fell below slightly in one domain which was his social and interpersonal skills, which is to be expected. This qualified AJ for graduation from ABA therapy and an official discharge of care. Sorry, I'm bawling as I type this...I hope it makes sense in the end.
When AJ started ABA with me, his entry test scores placed him between the ages of 2.5-4. He was 6 years old at the time, a month shy of 7. When our original ABA therapist took him on, he was around 9-15 months developmentally. She had caught him up over 2.5 years before she passed me the baton. I took him the rest of the way.
His test scores were so good on paper, that the therapist told us if we wished to, we could have AJ's official diagnosis of ASD revoked. She cautioned us in doing so as a diagnosis in America does guarantee additional services if they were ever needed. It is unfortunate, but that is just part of the game.
We have no reason to revoke AJ's diagnosis. We accept him whole-heartedly and feel that despite any test score, his autism will always be a part of him. We will leave that decision to him when he becomes an adult, but we have proceeded to raise him with the understanding that autism is normal. It's our normal and there is no cause to get rid of something we are not ashamed to have.
Now What?
With our graduation and official discharge of care, there was no foreseen reason why AJ couldn't be command sponsored by the military. We decided to reapply for command sponsorship. We compiled our paperwork including AJ's current I.E.P. with a letter from the SENCO demonstrating the school's incredible job in helping AJ sore through his curriculum. We provided a letter from his current psychologist who was overseeing the pharmaceutical prescriptions and guaranteed AJ's access to ADHD medication. Finally, we included his discharge paperwork from ABA therapy.
When I met with the EFMP office, they said, "Now that he is graduated from ABA, there shouldn't be a problem. We just didn't have a BCBA therapist to help you."
TIMEOUT! WHAT?
I explained, "We had worked with their "in-network" provider the entire time. No one had told me there was one. I found her on the registrar. All our insurance and payments went through Tri-care. You had the means to care for my son the entire time. There was no reason at all for his denial in the first place."
Her response, "Oh!...well...sometimes these things slip through the cracks. Sorry about that."
That was it. Sorry. My son slipped through the cracks of a broken system. At the heart of it, the Exceptional Family Member Program is supposed to be a network instrumental to families with members of special needs. It is their job to ensure that families can remain together by finding providers in the relocated destination that can care for them. Sadly, this post is undermanned and lacks funding. It's broken.
When I spoke to the base psychologist to plead our case, her response was, "I will be honest with you. At one time, we were letting everyone with a diagnosis of autism into the country. We found that we couldn't take care of them. Our school wasn't equipped to handle their educational needs and our doctor's didn't feel comfortable caring for them either, so we just closed the door to all of them. As soon as paperwork came in with a diagnosis of ASD, it was an automatic 'NO', but after seeing your case, I think we closed the doors a little too tight."
My response to her was, "That is the definition of discrimination."
She followed up, "Yes...yes, it is."
I will never be able to prove these conversations happened as there were no witnesses and I was behind a closed door, but I will go to my grave knowing that we were unjustly served and discriminated against by the United States Air Force.
Make no mistake, my blog is meant to express my emotions of anger and hurt, but it's important for me to note that I am not bitter. In fact, I wonder if we would have made near the progress we did if the Air Force had said "Yes". There is a spark that ignites in you when someone declares your son unfit. It drove me to do things I didn't know I was capable of and I learned a tremendous amount in the process. AJ's future looks a lot brighter now all because someone sitting at a desk somewhere said, "Denied".
The Good News
Our package was submitted. Aaron's commanding officer placed his signature on our request, and AJ is officially command sponsored!
What does this mean for us?
It means that my husband can now receive his whole pay check that has been withheld from us since August 2016. It means when we move back, we are allotted the correct amount of weight for cargo, so we can bring all of AJ's stuff, too. It means that AJ has the right to be seen by a medical practitioner and dentist on our assigned base. It means that AJ will be command sponsored back to America which includes the cost of his return flight home and guarantees him a seat on the same flight as his family. Yes, the military expected our 9 year old son to fly across the Atlantic by himself and we would need to pay for it.
More importantly, it means that we are whole again. I have righted a wrong that was forever burned into my bosom. I've accomplished a lot of great things in my 34 years, but I consider this the biggest win of my life.
We've Got Orders!
If we are Facebook friends, then you know the details already, but we are due to move back home to Colorado Springs in September! It has been a wonderful three years living abroad and experiencing many new and different cultures, but we are ready to be on U.S. soil again.
To be honest though, I have some reservations about our return to the great U-S of A. I have a hard time believing I will ever find a school as equipped as the one we currently attend, or teachers and aides as brilliant, loving, and passionate as our team now. America, you've got some big shoes to fill!
We had a blast this fall covering much of Rome and Vatican City and will be headed to Ireland in one week visiting Belfast, Limerick, Dublin, Cork, and the Cliffs of Mohre. I will try to a do a recap blog of both our trips when I get back.
Below is a youtube video I created in honour of my son and his time thriving in England: (You may have to watch from a PC to enjoy the music.)
Until then, remember to...
Light it up Blue for World Autism Day,
~K
