I can’t tell you that I have the answers to all of my problems (or yours for that matter), because that would be a lie. But I can tell you what I do to face an ever expanding siege of crises. Seriously sometimes it’s like my problems are breeding faster then cockroaches and I am forever under assault.

Success in any situation (or battle) starts in the mind: so stay positive, visualize success…and get a theme song. Now, as a woman of strong spiritual convictions, you may be expecting my answer to that would be a hymn. You know, I emotionally replenish by playing hymns (and Christmas songs) on the piano, but I have found far too many of my problems just don’t want to make peace with me. While I like a wide variety of genres, when I’m marching off to war with my challenges, far too often I need a song that puts me in the frame of mind to be unstoppable.

Sometimes it is the lyrics and sometimes it is the actual music itself that has me embracing certain songs as part of my mental armor. Just got a call from my PCP that I need to see a specialist right away and some things might be seriously wrong with my health? “Danger Zone.” I’m going in like one of those fighter jets…and I will do everything I can to come back out the other side because important people are counting on me to be here. Problems keep piling on for me and my family, and now we’re waiting for test results that could confirm rare genetic disorders for one of our kiddos?  “Enter Sandman.” This one is mostly about the music itself (which has a great “preparing for war” feel to it), but those problems better “sleep with one eye open” and be “gripping their pillow[s] tight,” because they will not be taking me down.  Got accused of something I didn’t do?  Sometimes the feelings that go with a situation require me to throw a whole album at it: “Reputation.” Except you don’t get to “light me up” and burn me at the stake unless I actually did it.

When Tony got handed his most recent wave of diagnoses, my approach to picking a theme song was a little bit different. I’m tired in almost every way imaginable, and I’ve been “fighting” serious problems without a chance to catch a breath for the past six years. Now, we love Imagine Dragons in this household and two of their songs have already made it into my theme song hall of flame. So this time, I picked a song (“Burn Out”) that has a message I say to myself to keep me hanging in there, and for part of it I changed the lyrics to match what I need to hear at this time of my life. “It’s just another [diagnosis] don’t let it get the best of you…Don’t burnout, don’t burn out on me…”

Adopting a strong mental attitude only helps me to fortify my emotional castle. I aim to do more than withstand the siege, so when more strikes (and it just always seems to) I move to formulate a plan of attack as quickly as possible.

As I looked at Dr.Hunt’s report for the first time, I really wasn’t familiar with the specifics of Mixed Receptive-Expressive Language Disorder. Yes, Tony is non-verbal but a lack of speech tells us nothing about the why, how he can be helped, or what he is processing of the language that is used with and around him. We already know Tony has some motor planning problems with speech production, but this new diagnosis speaks to something more.  Pun definitely intended.  My first step then, was to do a little bit of research.

I looked at the following websites and gleaned enough information to start acting on: 

https://www.ncbi.nlm.nih.gov/books/NBK356270/

https://onlinelibrary.wiley.com/doi/full/10.1111/j.1469-8749.2010.03750.x

http://www.minddisorders.com/Kau-Nu/Mixed-receptive-expressive-language-disorder.html

I am going to summarize what was the synthesis of my thoughts as I read through these articles. Please note, my inquiries into this particular diagnosis will get more specific over the next few weeks as I have more time to dig around.

I noted that individuals with the severe form of this disorder have problems with both receptive and expressive language in such a way that impairs their ability to understand instructions, which increases behaviors and is often confused with obstructive defiance. These articles indicated that at the time they were published, there was no consistent treatment approach that showed promise for all individuals, and that while vocabulary teaching shows improvement, it is recommended that a plan be customized to the individual. Also, very few credible studies on treatment methodology are available for this diagnosis.

I have observed that for Tony, his understanding seems higher when he is calm, but when he is upset, anxious, or feeling under pressure there is a noticeably diminished response to what he hears and his accuracy with his Touchchat HD goes down. A few months back, shortly before our son was diagnosed with ADHD, The Fabulous Miss Whitney (pretty sure that needs to be trademarked), Tony, and I were on a therapy outing to a WalMart Neighborhood Market that our little man had never been in before. He did amazing, just amazing. I was swelling with pride…until he asked for water and I had to tell him to wait. The flip out at the checkout lane was spectacular.  I thought taking him to one of the glass drink cases and choosing a bottle to buy would calm him down, but he was so upset he wasn’t responding at all to my words. I ended up needing to put him in the cart basket until we had checked out, and I wouldn’t give him the water until he calmed down and was willing to ask for it on his device and walk out of the store appropriately.

Whitney at that time suggested that we print out a few pictures for things like “stop” and “wait” that we could try using in those situations. I got so overwhelmed with everything that snowballed on me shortly thereafter that the pictures were printed- but never used. After I read Dr. Hunt’s report, I remembered that pile buried in my desk and realized that it was not only going to be necessary but would need to be expanded upon for other instructions, especially in some of his therapies where the tasks are upsetting to him. I immediately prepped a small set and started using them that very day, and right now I have a lanyard I am wearing with a few pictures we are using to reinforce instructions when Tony is upset. Stephanie is laminating an expanded set for both Andy and I to use on those occasions where his regulation is impairing his ability to process language.

Our experiences thus far are showing that this is helping him to calm down, follow a prompt, and act appropriately more often. However, not every situation is resolved by this approach because Tony definitely has his own ideas about what he wants to do and when he wants to do it. Like any introductory plan, I am going to be developing, modifying,and expanding what I do based on what our little man responds to and the recommendations of his other therapy providers.

I have said this before (a whole lot), but I’m going to repeat it again. Life is hard, and it’s definitely not a fairy tale. But I know that a positive attitude and a lot of hard work can do amazing things, even when the odds seem determined to discourage you and rub the fear of failure in your face. Never give up. When more strikes and problems try to batter down your happiness, get a theme song, make a plan, and kick some butt.