Tuesday, April 2, 2019

Today We Celabrate!

It's World Autism Day so it seems appropriate for me to hop on my (mostly abandoned) blog these days to give you a bit of a catch up on life with AJ. A lot has happened in the last 9 months.

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? 

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." 


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,


Tuesday, June 26, 2018

Half-Term Breaks and Other Shenanigans

I think it is safe to say that my New Year's Resolution for writing once a month tanked in February since that was the last time I posted. LOL! Oh well, I will just try to catch you up as best as I can. Not too much has happened other than the usual travel log and cool places that we've seen. I hope you enjoy some of our adventures.

Dining with Harry Potter

As many of you know from previous posts, Oxford is a hot spot for lots of Harry Potter scenes because much of the saga was filmed in our home town. Aaron and I were invited to High Table with one of the fellows that we attend church with in the Oxford building. He works at Christ Church which just happens to be the home to the dining hall where Harry Potter ate with his fellow Hogwarts wizards.

This was especially fun! I'm a huge Harry Potter nerd and love all things from the movies and books. I really hope to go to the museum in London one of these days!

High Table is a fun tradition and is by invitation only. The students dress up quite formally and gather below where Harry and his mates would have eaten in the movie. Aaron and I gathered in a separate room with the fellows of Christ Church (dressed in black robes) where we took a windy staircase from the back. This is where "Professor Moody" dashes away during Harry Potter and the Goblet of Fire. See!!!! I warned you; total nerd!

Here are a few great pics from our night on the town in Oxford:

Christ Church Courtyard
The floating staircases.

Broughton Castle

I don't know if you can technically consider this place a castle or not, think more Pride and Prejudice. It is an exquisite reinforced manor with a moat around it. It has a weathered church just outside the grounds, too. It is known for its beautiful ornate gardens that are easily viewed from the roof. This was the only house we've ever been able to step out onto the roof of which was a total blast for the kids. 

I ventured out on this trek alone since Aaron had to work during their break, so I was more than glad it was such a family-friendly establishment, because my kids were pretty wild! For only having two hands, I was a brave woman to wrangle them out onto the roof. Yes, brave...or stupid! 🙈

Here's an intimate look at Broughton "Castle":

Overlooking the moat.

Interesting ceilings throughout. Every room was different. The orange corridors left something to be desired though.

The Great Hall, every castle's got one!

Broughton Church

View of the inside of the church from the front and the back.

These were the robes worn by the inhabitants of this house during the coronation of
Queen Elizabeth II.

Ashmolean Museum

Next up, we took the kids to the Ashmolean Museum in downtown Oxford. They bring world famous exhibits periodically to this free-entry museum. We were excited to see the Michelangelo exhibit to only find out it had been moved the day before. SHUCKS!

We still enjoyed all the Egyptian collections, especially the mummies! AJ loves the classical movie The Mummy.

Berkeley Castle

Our next stop was Berkeley Castle. This was a fun castle that was only a quick hour, hour and a half north of our house. They had a knight fighting show scheduled and my kids love a good sword fight demonstration. The actors were brilliant, too. They were very entertaining even for us adults and we learned something as well. Swords were meant to be light and easy to swing so that they could wield them quickly and execute moves with intention. Hollywood somewhere along the line developed the notion that a sword is heavy and hard to pick up and move, making the strikes and blows all the more deadly. That isn't accurate at all. If the swords were actually as heavy as glamourised, they would be extremely difficult to fight with and would ensure death to the bloke carrying the heavier weapon. Interesting, huh?

The family has some interesting history tied back to them, too. For instance, Henry Lord Berkeley was 19 when he gained back the possession of the castle from the late King Edward VI in 1553. He had a son that got married to a maiden whose grandfather was friends with William Shakespeare. It is said that "A Midsummer Night's Dream" was written as a gift for the Berkeley wedding.

There are even ties back to America! You probably guessed it from the name. The town the castle resides in is also known as Berkeley. Several settlers from this town landed in Virginia in the early 1600's and Sir William Berkeley was made governor of Virginia during the Restoration. A Berkeley bishop also made it to America in the early 1700's and tried to set up a college. His plans were foiled due to funding, but the University of Berkeley in California adopted his name for their official title years later. Neat huh?

The history goes on and on, but I won't bore you too much.

Outside the Berkeley Chapel
Entrance to Berkeley Castle.

 We also got to enjoy a concert in the great hall featuring a small band of various recorders and other instruments playing baroque music from the time period when the castle was built which is the late 1000's. Can you believe that?!?!? This was Aaron's favourite part of the tour! He could have sat listening to their performance the entire time whilst imagining the type of entertainment, dress, and decor of the era. There is just something about being in a place with a history that makes it all that much more cool.

Roof to the kitchen. 
Dining Facilities
Beautiful state rooms and stairs.

AJ's favourite part of any cathedral or chapel...climbing up to the pulpit.
Taking in the grounds and getting ready for the sword duel.

Downton Abbey

British people are somewhat confused by all the hysteria from Americans about Downton Abbey. They also get a bit irked at our pronunciation of the word "Downton". Most Americans that I have come into contact with pronounce it "downtown" including my sweet husband. It is in fact pronounced /downᐧtun/. Don't get me started on how the English language is pronounced in England. LOL! I found out really quick that I speak American, not English. 😂

Anyway, Highclere Castle is the destination where much of Downton Abbey was filmed. Surprise! Surprise! Photography is not allowed on the premises as much of the inside is staged for the filming of the TV series with poster sized portraits of the show in action. I did, however, get lots of nice shots of the outside from the gardens. I guess you will just have to come visit us and see it for yourselves. It's PURDY! Ha!

Front Door

A typical English morning.

Lunch at Highclere

Royal Wedding

I'm sure there isn't a person on the planet that wasn't aware that Prince Harry was tying the knot with actress and fellow American, Megan Markle. They've been tabloid news for what feels like a year! Special celebrations have been brewing throughout the land in preparation for the big ceremony in Windsor. The kids got to wear a special outfit, partake of a special lunch, while decorations were hung throughout the towns. 

Paisley couldn't wait to watch the Royal procession as it revealed a real life princess. I swear she is half Brit. We indulged her wishes a little and picked up a few extra keepsakes and treats to celebrate this royal matrimony. It was a mother-daughter date on our couch with short bread and sparkling punch using our new embroidered tea towels and mugs. 

Bristol Revealed 

When Aaron and I get a bit of cabin fever, we just pull up google maps and pick a place we haven't been and start researching what's near by. We were supposed to go to Portsmouth, but the weather turned yucky and the beach didn't sound like a destination we wanted to go see. Bristol was the next best thing. 

We discovered an amazing manor relatively close, an impressive zoo, aquarium, cathedral, and an enormous ship that changed the course of sea travel as we know it, the SS Great Britain. Check 'em out!

Bristol Cathedral

Side view of Bristol Cathedral

The slide came out the other end. Uh, what?!

Two farmers doing what they love.

AJ's "mighty eagle" pose.

S.S. Great Britain

Adding a propeller to this ship changed the course of ship building for the rest of history.


We went to visit Bath for my birthday last year during one of the craziest gatherings of people I have ever seen. Yes, the Bath Christmas Market, where 1,000's of people swarm the streets to buy from shops and vendors. It was definitely not our cup of tea and we missed out on much of the sights due to congestion. We were just waiting for an opportunity to go back and boy am I glad we did. We got to see the inside of Bath Abbey and tour the Roman Baths, from which the town earned its name.

The Abbey was neat; I've seen lots of cool churches and cathedrals to boot. The Baths, on the other hand, were A-MAZ-ING! They date back to ancient times and are still a living font. Water continues to circulate through from its original source and flows outward just like it used to when used for its purpose. The imagery is set up well using projections and audio tours. You walk right in step with the ancient Romans. It. Is. Cool. 

I still can't get over the fact that loads of people came to the same fountain of water to take a bath whether it was self-replenishing or not. BARF! Thank goodness I was born in the decade I was; I wouldn't have made it back then!

Bath Abbey as seen from the Roman baths.

The living font.

And now...the Abbey...

Fun Fact: I FaceTimed my mom from here to show her what I was doing for the day. 

Always remember to look up. These cathedrals have the neatest ceilings. They are all so different and yet equally remarkable.

This was a particularly interesting piece of artwork. There are hundreds of butterflies hanging from the ceiling. Each one is completely different and unique to the one next to it. The reason they chose the butterfly was because of its migration patterns. This piece is to help us remember the beauty of the individual and not of the masses. It is to remind us that we are an ever moving culture with migrating pieces.

Bath is known for its architectural giants and unique designs. Here are a few more things we walked around to see:


Pulteney Bridge

The Circus

The kids and me at the Circus.

The Royal Crescent

Family Business

That pretty much sums up our travels and expeditions. A few exciting developments have happened on the home front. The kids earned their yellow belts in karate and are progressing nicely. AJ has actually taken a huge leap forward and will be testing for his next grade in July. Paisley is still working on a few more details and will most likely be coming up to a yellow-orange next school year. 

Paisley has been a good mentor and example for AJ during much of his training, but as he has blossomed, he is needing Paisley less and less. 

It's no wonder I am asked almost weekly if these two are twins!

Paisley turned 6 in mid-June and had a joyous party with several of her classmates. I also took her out to dinner for a mommy-daughter date night. She chose a lovely Italian restaurant downtown. I took the opportunity to take some pictures featuring the beautiful museum in our village and my cheeky little monkey. I can't believe she is 6. Where did the time fly? 

She had to call AJ on her Peppa Pig phone to see what he was up to while we were eating. He was watching a movie. 😂

The best part about our date was that Paisley asked me if we could go to the park afterwards to "move our bodies because we had been sitting for quite a while". Later, she confided in me that she just didn't want the night to end so she was just trying to come up with something for us to do. 

I love that she wants to spend time with me. These days are short. I hope to enjoy them to the fullest. 

What's Next?

The kids are only a month away from finishing their second year in school. I can't believe we are closing out our second year and about to embark on our "last time list". 

Aaron's brother and sister-in-law are headed here in a month, and we have some big plans for when they are here. I can't wait to share it all with you.