Catching Up

I have had the worst case of writer's block EVER I suppose because for MONTHS I just have had nothing worthwhile to say. Sure there's been plenty of meaningful moments and much excitement going on around me but I've just been in somewhat of a funk and just really felt that if I didn't have anything positive to contribute to the already overcrowded-with-crap internet, then I should do like my mama said and not say anything at all. But now I have gotten into (and fallen in LOVE with) the world of essential oils and - hooray!! I have something positive to contribute, once again!! But, before I can even go into how the oils are helping us, I feel like I need to do some catching up on what's happened since our last trip to UAB. For months and months that would have been an easy job because NOTHING HAPPENED. We waited. And we waited. And we waiting some more to hear from UAB after all the testing we went through only for them to tell us we needed more testing. But we were going to get the results of the tests that COULD BE useful for the future testing at some point. We had actually received the short-version of the results of the UAB testing over the phone. After all those long hours of tests, we came up with two rule-out diagnosis, meaning more testing was required to tell us what we went down there basically just to confirm.  At this point, I have no doubt that my daughter is on the spectrum and definitely has attention issues. We were told that the final report would be mailed to us once it was transcribed which could take some time...and that it did.
  Then, one day, we get a call from Vanderbilt that we have reached the top of their waiting list for the Autism Testing and they gave us an appointment. After feeling burned by UAB, I asked if this would be the same deal as UAB offered us: we drag the girl-child through all sorts of testing and poking and prodding just to be told we have to do even more 3 years down the road before we have an actual diagnosis.  They said that was not the case with them and that we would within 2 weeks have not only our actual diagnosis for my girl, but also recommendations for things we could be doing to help her. Sounded wonderful to me! So, as it had been about 4 months or more since UAB was going to start typing their reports up and send them to us, I decided to call and check to see when we could be expecting them.  All were ready except for the report from the psychologist who was about to go on maternity leave. With our Vanderbilt appointment rapidly approaching, I called and asked - no, BEGGED- her to PLEASE dictate her findings so we didn't have to go through the same testing at Vandy.  Finally about a week before we left for Vanderbilt, we got the report.  This turned out to be more important than we knew because the DAY before we were to leave for Vanderbilt, they call us to let us know that our insurance would not pay for any of the testing they were going to do. After hours on the phone it was concluded that our insurance does not cover Autism Spectrum Disorders AT ALL. Seriously. In 2015??? Nope! Not.A.RED.CENT. (Apparently other providers had billed differently, because in two plus years this had not been a problem.) I flipped my wig. We had waiting over two years for this test, had our hotel room booked and paid for, and needed $1500+ the next day. Fortunately, we had the resources to still be able to go, but what if we hadn't? What do people even do who have severely autistic children and wait for years to find out what is going on and then can't afford to get the help they need? I'm very thankful that's not our situation, but the wrong of it all just tears me to bits. So, we headed off to Vanderbilt and acutally had a really great time. Vanderbilt got us a discount on a really nice hotel which shuttled us to the hospital and we were able to make a fun trip out of it. The hospital was GREAT with wonderful staff and it went more smoothly than I could have ever imagined. Vanderbilt was able to use the testing done by UAB and it saved us about half of what we would have had to pay and more importantly saved the girl-child from hours of retesting. Within two weeks, we DID have our diagnosis of Autism Spectrum Disorder; ADHD, Inattentive Type; and Anxiety Disorder. Most of what they recommended we were already doing, but they did suggest she receive Cognitive Behavior Therapy on a weekly basis instead of every six weeks as we had been doing due to the distance from our doctor in Birmingham (She's worth every mile!). It was just such a relief to have the actual confirmed diagnosis and to know that there is an actual physiological reason for some of her struggles. Once the problem is clearly identified, the solution is easier to identify as well! Isn't that what someone taught us in school? Math maybe?

Leaving the hotel the morning of testing and Vanderbilt.
The girl-child wasn't real excited...

  So that puts us where we are today: Social Skills on Monday, Occupational Therapy on Tuesday, after school activity of my daughter's choosing on Wednesday (right now it's a "Gooey Science" class at her school), horse back lessons are for now scheduled for Thursday, and a Girl Scout outing on Friday. We squeeze the cognitive behavior therapy in there somewhere, too. That's just our typical week with no kinks or extra appointments (which we seldom have a week without, but you get the general picture). This is where the essential oils have come in. Not only is my daughter a prime candidate for benefiting from the oils with her anxiety and attention issues (she is the reason I tried them), but with all the stress and hustling, this mama needs to be on top of my game! As I have written in my introductory blog, I by no means seriously think of myself as the Mom Bomb. The majority of the time I am a HOT MESS, I tell you. I am less than well-organized for sure. My phone stays dead half the time and my husband says living with me is like a constant scavenger hunt because we are always searching for where I've left something: my phone, my glasses, the kids (just kidding on that one-they are hard to lose, trust me! ha!). But these oils, y'all! I can breathe again with them. Literally and figuratively. The baby is at long last sleeping through the night meaning I can get up and go to the gym with friends at 5 a.m. I feel healthy and am using the oils instead of the pharmaceuticals that made me feel so sluggish and blah. The oils are a game changer, I tell you. I actually feel like I'm winning for the moment! Or at least staying in the game. I'll talk more about how we are using them in future blogs, but don't worry. This is not going to become "Allison Sells Oils" blog. I still plan to blog about the crazy, the heart-wrenching, and the wonderful things going on in our lives. Until next time!!

The Sparks Experience (Part 1)

The girl-child's teacher and guidance counselor first made the suggestion of Asperger's during the fall/winter of her 1st grade year, 2012. The school brought in an excellent psychologist who we still see today and we got the initial diagnosis just before we were released for summer break. This would have been enough for an IEP (if her school offered them) but apparently some places/insurances require more thorough testing and our doctor made the referrals to Vanderbilt and the Sparks Clinic at UAB where they would perform more detailed evaluations (whichever could see us first). We knew the wait would be long so were surprised when we got an appt at Vandy in late Oct (or maybe it was early November) of 2013. We drove up only to see a Nurse Practitioner who ruled out any underlying medical causes of the symptoms we had seen and said that the girl-child should indeed be tested for an autism spectrum disorder (duh) so back on the waiting list we went. They said it would be 4-6 months. We were able to get on the "in case of cancellation" list at UAB since fortunately my job allows me to take off with short notice. 8 months later, we got the call. We received word on Tuesday that there was a cancellation for Thursday at 8:30 so I made the calls to work and for childcare for the baby and on Thursday morning, the girl-child and I arrived.

Reception:

The waiting room was much better than I'd expected. There were plenty of toys, books, and a movie going. Only 1 other child was there when we arrived. He was apparently on the non-verbal end of the spectrum and was having some serious behavioral issues. Adding to the mom's problem of keeping him in check was the fact that they had arrived 3 hours early for his appointment. My girl seemed to at first be a little upset by his noise and magazine-throwing and sat looking quiet and a little scared. We received our schedule for the day and of upcoming appointments as well as two pages of suggestions for nearby lunch places and fun places nearby to fill any gaps in the schedule and I tried to entertain her (and distract her from the commotion) by discussing our options for lunch. Fortunately, we didn't have long to wait.

Hearing:

The first appointment on our list was a hearing check. My first thought when the group of young ladies came to the door to call us back for the appointment was, "Where are the adults?" They all looked so young! We went into what basically looked like a bomb shelter and the girl-child was given two soft earbuds to put in. Through an observation window, the girl-child was observed raising her hand in response to a series of beeps. She repeated back a series of words such as "airplane" and then we were done. Nothing wrong with her hearing except a bad case of "Selective Hearing". Sometimes she decides she doesn't want to hear so she pretends not to.

Occupational Therapy:

After going back to the waiting room (the door had now been closed to barricade in the poor child who still had a solid 2 hours before his appointment), we were pretty much immediately called back for OT testing. I was allowed to sit behind an observation window as the girl-child traced lines, dribbled tennis balls and put pegs into small holes demonstrating her motor skill ability. I then was called in and interviewed about my take on her motor skill difficulties and what I hoped to obtain from the visit (diagnosis, extra services, etc.) While I talked, the girl-child played games with the staff and began to loosen up.

Speech/Language:

We were again taken back to the waiting room (the 3 hour wait kid must have finally been taken back) and again were immediately called back for the Speech/Language segment of the testing. We started with basically the same questions for me as in the OT session and then I was allowed to step into the observation room while the girl-child was assessed. To me it seemed more like her comprehension skills were being assessed than her speech skills (ex:"Show me the picture of someone who has been doused; "The man said 'I think I'll hit the sack.' What did he do?"). Some of the questions seemed hard for an 8 year-old (ex: "The box is posterior to the ball. Point to the picture that corresponds). While the girl-child had completely found her groove and was making her usual jokes and cutting up with the girls performing the interview when we first started the Speech/Language portion of the testing (still not sure of all of their credentials but at this point I had figured out that one was a speech intern who would follow us throughout the process), she soon started getting tired, hungry and started having (I thought) trouble with focus. She had to ask for questions to be repeated several times which was apparently not allowed to be done. She started looking nervous, frustrated and and getting fidgety. It was time for a lunch break. As 12:00 rolled around, I was on the verge of stopping the test and telling them she needed a break. Finally, they also realized the time and called me back into the room. Apparently the test was supposed to continue until she missed so many (4 maybe?) in a row and since she wasn't missing any, they had to  keep going. (Go, girl child!)  After the scoring process of this OWLS evaluation as it was called was explained to me, we were turned loose on the streets of 5-Points Birmingham for lunch. (PTL!)

Lunch:

We walked the .20 miles through 5-Points, dodging cigarette smoke and cars, to Mellow Mushroom where the girl-child ordered world's largest slice of pepperoni pizza only to take two bites and remember that she doesn't like Mellow Mushroom's pizza. We were a bit rushed getting back and the 5-Points area is busy, loud and a little scary to two girls from the country, one of whom doesn't do loud, unexpected noises very well. If I could call a Mulligan, we'd have brought our lunch and eaten in the courtyard at the clinic. On the walk back, we got stuck behind two large ladies (no room to pass on the sidewalk) walking, talking and blowing their cigarette smoke into our air. Leave it to my walking Public Service Announcement to let them know, "We just heard a commercial on the radio that said that cigarette smoking leads to gum disease and you could lose your teeth." Ha! True that! We made it back to the clinic just in time for our one last appointment.

Vision:

This time, a pretty blonde lady named Dr. Dinkle and her side-kick (assistant? student?) came to get us with a pile of paperwork for me to fill out while they dilated the girl-child's eyes. (From my understanding, this optometry department is seperate from the Sparks Clinic, hence the need for additional paperwork. They submit their findings to Sparks and it all goes into one big report in the end, but billing, etc. is seperate.) It wasn't until I had finished my paperwork and she came out of the exam room that I realized the breakdown had begun. She totally did not understand why her eyes were being dilated and thought she was being blinded for the rest of the day. We spent the next 45 mins back in the reception area talking silly selfies, using my camera phone to document the progression of her eyes' dilation, calling Nana and basically doing whatever we could to avoid an all-out freak-out. 

By the time Dr Dinkle and friend came back to get us, the girl-child was sure she was going blind, would never see again and it was all my fault for bringing her to such a horrible place. Fortunately, she was must not have been the first child to have this reaction and toys were brought out to distract her through the eye exam. (Good, sensory stimulating, flashing, squishy ball-toys. Yay, Dr. Dinkle!) While they did decide the girl-child is somewhat farsighted and has a slight astigmatism, Dr. Dinkle didn't think we were at the point of glasses. Unless the girl-child starts to have problems such as headaches, we will follow up with them in one year and, if things have worsened, we may need to consider reading glasses. 

The fun:

Since we are frequent visitors to Birmingham for appointments (we see our beloved Dr. Le, Christian children's book writer and most importantly psychologist specializing in childhood ASD's, about every 6 weeks) we are always on the lookout for cool stuff to do in the 'Ham to add a little fun/adventure to each trip. Today we hit up Steel City Pops for a victory reward after the long day of testing (about 6 1/2 hours). Their popsicles, featured in Alabama Living's June 2014 "Worth the Drive" article, are made from whole ingredients with many of the ingredients coming from nearby farms and producers. SO YUMMY.

What's next:

We are scheduled to complete the psychology part of the evaluation process on June 30. Our parent conference with them isn't scheduled until Aug 4. We still have the above "on the autism waiting list" stamp on our schedule. Does this mean we have more waiting to do? Is there more to the test than what we are already scheduled for? Why the crap did I not ask while I was there? (Mom-bomb fail!) For now, we just carry on.