When we are discussing Ken’s diagnosis of Clinical Depression it is no longer possible to do so as a stand alone issue. This seems to be a common thing I have found when I talk to other people suffering (and healing) from a mental disorder, the combination of multiple diagnosis. Often you hear about depression with anxiety, or a phobia… possibly the underlying diagnosis is the lead in to the depressive tendencies.
For Ken we have also had to learn how to deal with a rather interesting hearing disability known as – Central Auditory Processing Disorder, or CAPD. I know, not a commonly known thing. In fact, I am still learning about it and I do believe so is Ken. BUT it has answered some questions as to behaviour and issues in conversation and public settings Ken has had. Let me share the noticeable symptoms in adults as is found in the Wikipedia article Ken found me (if you wish to take a look at this highly technical article from the start go for it); adults with this disability/disorder tend to:
- talk louder than necessary
- have trouble remembering a list or sequence
- often needs words or sentences repeated
- have poor ability to memorize information learned by listening
- interprets words too literally
- need assistance hearing clearly in noisy environments
- rely on accommodation and modification strategies
- find or request a quiet work space away from others
- request written material when attending oral presentations
- asks for directions to be given one step at a time
Now for anyone who knows Ken well as you read this list light bulbs should be blinking on all over the place. Especially if you have ever rattled off a number for him to input in a computer or phone… yah not happening. That really is the sign of a spot on diagnosis… do one or two of the items on this list apply to you… NO pretty much ALL of them do.
I think before I discuss a few of the symptoms Ken has and how they affect everyone I will try and explain what CAPD is… Ken found me a couple websites (beyond Wikipedia) that do good job of talking you through it. First off a bit of an explanation as to how this disorder works with the ear and hearing explicitly:
When a person has central auditory processing disorder (CAPD), the part of the brain that translates what the ear delivers does not function properly. The person with CAPD can hear sounds, but how the brain translates those sound is disrupted, and the end result is a garbled message. (EXCERPT FROM)
So basically your actual hearing is not impaired, there is no hearing loss per say. Sounds are normal volume and clarity in that respect, the problem is in the processing and the brain. So when you hold a discussion with someone with CAPD they are hearing your words, but once they go to sort out the conversation and their response to it, that is where the problems occur. This is distinctly different from the more easily diagnosed deafness or hearing impairment that we are all more familiar with. Another way to think of it is like a short circuit (NOT MY ANALOGY). The information comes in but is not making it to the correct destination in the right order or as a complete and clear message.
Ken has always been unable to spend a lengthy time in crowds. People always joke that if there is a comfy couch you will find him, halfway through the night, asleep on it. Well, this explains that a little. What most interpret as anti social introvert (now don’t get me wrong, he is that as well to a degree) was really a survival mechanism for when he simply could not handle the constant hard work that participating in conversations in crowded and loud room requires of him. The average adult is quite adept at filling in blanks in noisy situations, carrying on conversations with distractions and generally filtering out nonsense and unneeded stimulus. What CAPD is (at least for Ken) is where the brain simply cannot handle all of that stimuli in an organized manner. Often multiple conversations in a room (even if you are only a part of one) hold too much distraction to keep sentences organized and recognized as coming from a specific conversationalist. That is just an obvious example of course.
I have actually discussed the interpretation of people’s words issue. Ken will often lean heavily on semantics. This makes more sense (and honestly sometimes it is just to tick me off…) when you think about how as he is listening to say a procedure or some sort of directive he is not processing 100% of it. To make up for this he needs total clarity on what does make it through. Like a radio cutting out, you try your hardest to figure out what is coming through and extrapolate to create a complete series of steps. Ken is constantly dealing with his brain recreating the cutting out radio. Of course, to deal with this necessity he often jokingly brings up semantics and plays around with being a stickler for over detail. I personally feel this is often an attempt to soften, for the rest of us, the way Ken has to deal with conversations. It is not like he is completely unaware as to how complicated and frustrating it can be to be asked for greater and greater detail when all you want to do is say – JUST GO DO IT ALREADY.
Now the trick of this disorder is that it is hard to diagnose, people who have it tend to compensate for it, some better than others. Ken’s depression really put a damper on that. With anti social behaviour enhanced and as he phrases it his “Give a F” (you can fill in the word there I am sure) very low… well the depression lessened the need or wish of his brain to create a bridge across these difficulties. When you are not in a good mind set introspectively it often quickly and drastically increases and additional effort you need to make to sort out the externals. This is rather apparent when you speak to Ken on many topics. All this is bundled in with a genius IQ (I kid you not, tested and everything… this is one girl who will NEVER take an IQ test… no need for that humiliation) and creates and external personality that seems ill equipped for many of the situations that we “normal” (I hate that word… maybe average?) people find so simple – crowds, rattled off telephone numbers, verbally given steps or stages for tasks… these all become mountains instead of mole hills.
The whole family has learned (even before we knew we needed to) to adapt to how Ken hears us. Now don’t get me wrong, it can be utterly FRUSTRATING to tell him something on the fly only to have him look at you blankly and say he got nothing of that, could you please repeat it. At which point you inevitably cannot remember A WORD YOU SAID! BUT it has slowed our speech down at times, words are better enunciated. Patience is a virtue that is slowly being improved upon.
Our family has become a family of lists and notes. When one person cannot remember offhand a list of anything we all have tended to finding a paper and pencil. The twins take great joy in leaving requests on the chalkboard, a piece of paper, the boogie board (wouldn’t I love a few more of those!!)… often meant just to be humorous it is a visual reminder, an opportunity for the kids to practice spelling and writing skills AND a bit of respite for Ken who then does not have to attempt to remember yet another spoken item.
There is something to be said for compromise and adaptation. And really with any disability that so acutely affects any of your 5 senses it is inevitable. I am proud of our adaptation and our work to be a home of openness and all encompassing compassion and love. So I will end this blog entry as I have all the ones regarding our journey and say YOU, you that are reading this are ALSO welcome in our home and in our hearts… You are NOT alone, we love you and we are celebrating your successes as you take your journey to become a healthy individual!
