HAVE A COPACETIC HOLIDAY, Even with CAPD

The holiday season can be fraught with stress, and, of course, 2020 is setting records for one of the most stressful in a century. From poor health, food, home and job insecurity, loneliness and isolation to political and ideological differences, we all are facing new challenges in one form or another. But we all would like our holiday season to be peaceful and joyful, whether we celebrate the Solstice, Christmas, Hanukkah, Kwanzaa, St. Lucia Day, Dong Zhi, Shab-e Yaldaa, Ramadan, Toji, Santo Tomas Festival, Soyal, Illuminations, or just the beauty of winter (apologies to those whose celebrations I missed). Even Scrooge just wanted to be left alone! He probably had Central Auditory Processing Disorder (CAPD). We all have notions as to how we would like to celebrate the season. People with CAPD do too, but often things can quickly get out of control.

Whether it is stress overload, misunderstanding what your friend meant when she said “Ugh, these cookies are TERRIBLE! Why don’t you give them to me?”, or asking your child with CAPD to get the sugar from the pantry and he comes back with a bucket of water for the tree, it can only add to the tumult of the days. And, those are challenges we have in a normal year! This year we have to worry about making sure our friends and family are safe, and that they know they are loved.

For many people with CAPD, these challenges have added to an already challenging life. People with CAPD are great at faking it, great guessers. People with CAPD need their many coping skills to maneuver through the roadblocks they face daily, like worrying if they responded correctly, or understanding what was said to them when others are talking, or following a direction incorrectly, or tolerating a noisy environment, or perhaps over- or under-reacting to a perceived tone of voice. Naming a few of these is issues is fine, but it does not come close to illustrating what goes on in the day of a person with CAPD, because we are each individuals with our own stresses.

Tips and Tools

What can we do to alleviate holiday stress? Here are some tips and tools that might help. Remember, as we are each individual so some may apply and some may help, and some may not. Think about how each might work for you and yours before adopting or rejecting. Sometimes experimentation can yield unexpected and welcomed results!

First Face Your Fears

Spend 10 or 15 minutes each morning thinking about what you have planned for your day. Make sure you have some peace and quiet to do that (sometimes the bathroom is the only place you might get that)! Before you visualize what you want your day to look like, think about what you fear about the day. If you are driving your Aunt Betty to the grocery store, and you are dreading it because she always asks you questions that you can’t totally understand, identify that problem.

Once you have identified your fear, play out in your mind’s eye how you anticipate that will go, and what exactly you fear as a a result of that issue. Maybe Aunt Betty will be mad at you, or you THINK she is mad at you, or thinks that you are annoying, or something like that. How do you feel about that? How could you change that scenario?

Why is it that you can’t hear Aunt Betty in the car? Because it is too noisy? Or, because Aunt Betty mumbles? Or because the radio is on? Or because it is difficult for you to listen and think and drive at the same time? Identify your listening difficulty and come up with a plan or two to avoid the outcome that you fear. In this instance, you could turn down the radio, or explain to Aunt Betty that you have a listening problem and how it would be so helpful if she could speak more slowly, or loudly, or wait until you are out of the car, etc. (If you have difficulty explaining CAPD to others, please see my YouTube video, “How do I Explain CAPD?” https://youtu.be/hW4K6KnFbXI). Then, visualize what might happen if you were to execute your plan. Maybe Aunt Betty will dismiss what you say and that will be too bad, but will it be any worse than not addressing the problem? How might you feel if Aunt Betty listens to what you tell her and reacts in a supportive way. How about getting lunch so that you have a quiet atmosphere, where you can look at Aunt Betty for visual cues and discuss her questions? Today, you might have to eat it in the parking lot, but that’s not so bad, is it?

If you can anticipate potential problems and find possible solutions, you might be able to avoid some of the communication breakdowns, and subsequent frustration that will surely add to holiday stress. Some of the following may help.

1. Write down your triggers. When and with whom do you remember having communication breakdowns. What might have helped in those situations?
2. Sometimes you just need to avoid those sensitive topics. You could always say something like “You know, Mary, I would really like to discuss this with you, could we connect later?”
3. Or, you might need to set limits with your kids. If there are things you or they need to get done, plan it out and go over it with them. It is always helpful to know what is going to happen, or what is expected. If your child is old enough, you might even be able to explain to them that you need a little time, or that THEY need a little time and why.
4. Don’t try to do too much at once. Many people with CAPD do better focusing on one thing before starting the next. Multi-tasking is NOT a thing!!!
5. In that vein, make lists! Don’t try to remember everything, which is definitely my recipe for failure. Keep the list handy so that you can add to it as you think of things.
6. Never refuse support! (Or almost never). No one will think the worse of you if you don’t do everything alone! If they do, that is their issue.
7. Sometimes we just need to say “No”. Set your limits.

Here are some potentials for communication breakdowns to look out for:

At Face-to-Face Gatherings:

Although we are not holding large gatherings this season, many of us are still trying to keep to our traditions. Often that includes cooking special meals, listening to music, perhaps having a drink or two, kids might be excited and boisterous etc. As all those things progress, life becomes a bit less controlled. People (children and adults) often have greater difficulty processing as demands increase – including having to watch the stove, get the food on the table, filter out surrounding noise, tolerate the excitement of the holiday, etc., etc. If you anticipate the commotion you can alleviate some of the stressors before they begin. The following may be helpful in any type of face-to-face gathering in 2020 and beyond!

1. Do things in stages. In the old days (when I was growing up) my mother had most everything prepared before the guests arrived or the party started. In my own house, often times everything occurred at the same time. I was still cooking dinner as the guests arrived. The music was playing and the kids were all running around the house. I actually repaired to the kitchen for a little peace and quiet. In my mother’s house, we all sat around chatting before going to the table. We ate. And then afterwards we might all sing or listen to music, or play a game. The environment was controlled by separating activities. We were more able to appreciate each other because there was not a great deal of distraction, or of activities to process.
2. Reduce the noise level. Turn the music or the TV down or off. Set up a special area for the kids (who are usually louder) to congregate. If your child does not like the commotion, allow him or her to find a place where they are comfortable and can participate by watching and only joining in when they are ready. Or, give him (or you) some ear protection.
3. Many phones can be used as microphones when paired via Bluetooth to your earphones. On my iPhone I have set it up where it can be turned on and off in the Control Center. Once you’ve done that, just place the phone near the person you want to hear.
4. Prepare as much as you can beforehand. That way you can spend time with the others and enjoy their company without getting stressed out. Or, if your child has special needs for communication, you can be there to help.
5. Do what you can to provide clear visual access to the other guests for the person with CAPD. Encourage your child to look at the person they are speaking with.
6. When you miss something that is said, rather than just saying “what did you say?”, include what you did hear when asking for repetition. An example might be, “Which movie did you say you wanted to watch after dinner?” Encourage your child with CAPD to do the same.
7. Be sure to seat the person with CAPD away from noise sources, like the kitchen or the speaker.
8. If your child with CAPD cannot handle the situation, allow them to have a break and come back when they are ready. If possible, encourage them to return, as you want to build their ability for socialization.
9. Be vigilant for signs of stress. If you feel stressed, take a break yourself. If you see that your child is nearing his point of overwhelm, give him an “out.” Ask him to go do something for you, or fetch something from his room, so he can gather himself before coming back to the group.
10. If someone does not appear to hear you in a noisy situation, get their attention by saying their name or moving so that you are in their line of vision. If you think it is appropriate, you can touch them gently on the shoulder.
11. In 2020, you will hopefully be social distancing and wearing masks if you have anyone outside your “bubble” in attendance. Both of these degrade the auditory signal. The farther you are from a person speaking the more of the signal is lost due to the distance. The mask actually reduces the higher frequencies so that they are less audible by 5-12 decibels. This is enough to make sounds like /s/, /f/, /th/, etc. much less audible. So, if your visitor said “My sister’s cat got out by accident and came back in with feathers in his mouth.” The other person might hear “Mister Cabot got in an accident and there is his mouse.” Kind of hard to respond to that. Keeping the background noise level quiet will help with that. You might also encourage your participants to wear a mask with a window, which will at least allow for access to some facial cues. Unfortunately this will be hard no matter what. Anticipate and deal with what you can, and explain to others why it is more difficult for the person with CAPD (as long as you have their permission to do so).

Online Gatherings

1. Optimize your internet connection. Nothing is more difficult for all of us than an internet signal that goes in and out, but it especially difficult for someone with CAPD. Turn off any devices that are connected to the internet before you start your gathering. Place your computer or tablet, or phone wherever you get the best reception. If the signal is really poor, you may have to ask the guests to turn off their videos unless they are speaking.
2. Encourage everyone to speak one at a time. Some online platforms have a “hand raise” option. Does this make the party a little less spontaneous? Yes, but if you can’t hear what someone is saying, then it isn’t much fun anyway.
3. If speech reading (seeing the visual cues from the face) is helpful, then the person speaking can be “pinned”, or the program set to automatically focus on the face of the person speaking.
4. Encourage use of earphones with microphones. The earphones will block out some of the surrounding noise at the listener’s site, and the microphone will pick up the speaker’s voice more clearly than the device’s internal microphone. If you have more than one person on a device that will make it harder because, typically, once you plug into your earphone jack the computer speaker is muted. You can get a splitter so that two people can plug their earphones into it.
5. Encourage people to mute themselves if they are not speaking to reduce competing noise (and improve the signal.).
6. If you are incorporating games into your online party, provide the game beforehand so that everyone has a chance to figure out the rules and how to work it on their devices.

One of my rules when testing children is “Never assume, and be flexible.” I think you could use the same rule here. If it appears that someone has misunderstood, check with them to see if they have any suggestions to make communication clearer.

Have a safe and peaceful holiday.

https://youtube.com/channel/UCp6KtG6n8iVEAIWK0VXx7iA

No. That is NOT what I said.

I get overwhelmed.  It can be anything.  Right now, we are getting our house ready to sell, keeping it clean, figuring out lodging for Santa Fe, making sure to spend quality time with my mom, cleaning out her storage locker, worrying about our dog because she has torn her ACL, etc., etc., etc.  And, I can handle all that.  But, the minute someone asks me to do something that is not in my plan, beware!!  The most innocent statement might just hit me the wrong way and I am ready for a fight.  Ask me to help bring things in from the car when it is not in my plans and I am doing something else, and I might think that you are trying to tell me what to do! – and who are you to control my life!?!?!  And WHY don’t you know that I am doing something else and that I cannot cope with one more thing.  Yes, I might have looked like the picture of calm, and not given you any clues that I might be at the brink of an eruption, but you should have known!!!  Of course, when things calm down and I can think rationally again, I realize that I might just have overreacted a tiny bit.

That happens to a lot of people.  One of the reasons I believe it happens to me is because my brain can’t function as well as I’d like if there is too much going on.  After years of testing for central auditory problems, I have come to realize that I have what is called an Auditory Integration Deficit (AID).  Of course, at this point, I could never really find that out for two reasons.  One is that I have used the tests for others so many times that I know them by heart!  The other is that some of the therapy that I have done with others has rubbed off on me.

AID is basically a faulty or delayed communication and integration of auditory information with other things going on in your brain.  These might be other auditory things, like you might be able to understand and identify the sounds that are coming into your brain, but then not be able to put it together with your understanding of timing and sequencing of sounds, of identifying patterns of how sounds are coming in, etc.  Or, it might be with other parts of the brain, like those that process visual input, or memory areas, or language areas that allow you to understand those crazy sounds coming in.  So when you say “Can you please help me carry the boxes in from the car?”, I hear “Can you PULEEZE HELP ME CARRY THE BOXES!!”  Or, “Stop everything you are doing and get out here immediately to carry all the boxes in from the car all by yourself while I go in and sip a glass of iced tea!  Why aren’t you here yet!”  So, even though I understand the words that are being said, because there are other things going on in my head, I don’t access the  tone of voice effectively enough and think the person is angry, annoyed, controlling, unreasonable, etc., etc., etc.  As you can imagine, this is not the best way to communicate if I would like to have a respectful, positive relationship with that other person.  Not only do I hurt the other person’s feelings, but I create anger and anxiety in myself.

In addition to misunderstanding the underlying intent of a communication due to mistaking or missing tone of voice cues, including the rhythm, stress and intensity of voice, AID can manifest in other ways.  You can think of the connectors in your brain as highways.  The more information, or cars, going across the highways, the slower the information travels, and sometimes there are even traffic jams. Excessive noise, listening to more than one talker, looking at something while you are trying to listen, worrying about whether your teacher is going to call on you in class, for example, can all create traffic jams, keeping you from understanding what someone is saying, or what you are reading.  I often find that I have just spent five minutes reading and have no idea what it was that I read.  I may have to go over it three or more times before I get it.  Of course, if I am reading a mystery novel, I have no problem at all.  When I am relaxed, interested, and there is no pressure on me to understand what I have read, reading is easy!  If I know that I have to remember what I read, or the information requires me to concentrate to understand it, that is when the problems arise.

Now I limit myself to reading what I need.  I don’t read professional journal articles unless I can relate the information to something I specifically need.  I keep abreast of current literature by reading synopses and abstracts, and going further if I need to know more.  I listen to audiobooks for pleasure.  I love narrators who have great intonation in their voices, but hate it when their intonation patterns are inappropriate or poor.  I pay more attention to that than I do to the content!  We are lucky to have programs now like Scientific Learning’s Fast ForWord to train the auditory skills we need to make listening and reading easier for kids and adults with central auditory processing disorders.

Most importantly, though, I try to be aware that my perception of what another person has said may be incorrect, and that I must try to keep an open mind before rushing to judgment.  I am not always good at it, but I keep trying, and I am really lucky to be surrounded by dear souls who don’t give up on me!

 

 

Batman CAN save the world

This is a picture of me and my friend, Batman.  I call him Batman, not only because he loves the superhero, but like the masked crusader, he has gone through some tough times in his short life.  And, because he and his family are my heroes.

Batman and his family have taught me so much about persistence, and dedication, and support, and love.

When Batman and I first met he was 3, and his mom believed that he had some problems with his hearing, but had been unable to get a complete picture of what was going on.  Batman had a few other medical difficulties, including sensory processing problems, ADHD, and duplication of the 12th and 22q11.2 chromosomes which can cause behavior issues. These confounded the process of getting a clear understanding of his auditory function.  He had already started to receive occupational and speech therapies through early intervention services.  When we met, Batman and I hit it off immediately.  He is a funny, creative, imaginative, sensitive young man who makes me smile every time I see him.  He also had difficultly following auditory directions, could not tolerate noisy or confusing environments and had some speech/language delay.  We did find that his recurrent middle ear problems cause him to have mild fluctuating hearing loss.  We also found, eventually, that he has central auditory processing problems as well.  Because of his fluctuating hearing loss, Medicaid agreed to pay for his hearing aids.  He was fit soon after our initial meeting with hearing aids in both ears.

Batman’s mother is amazing.  She and his father have three other children at home who also have medical needs of varying types and degrees.  Mom spends her days (and nights, I imagine) taking care of her children.  You might say, “Isn’t that what every mother is supposed to do?”  Yes, certainly.  But, not to the exclusion of almost everything else.  She is a knowledgeable, positive, cheerful yet dogged advocate for her children.

When she came in for Batman’s post fitting check a few weeks after getting his hearing aids and told me that she felt the aids had already created a clear improvement in his negative behaviors, I was thrilled for them.  Batman wears his hearing aids on a regular basis (sometimes with his Batman paraphernalia – he has a T shirt with Batman’s silhouette wearing hearing aids).  He calls them his “super powers.”  Mom brooks no messing around.  The only time, in his waking hours, he doesn’t wear one of the aids is if he has a draining ear due to his ongoing ear infections. As you can see from the picture, Batman is doing well!  He is still smart and funny and creative, but now he can function much more easily in unfavorable environments and can show the world his scintillating personality with greater ease.

Batman’s story is such a clear example of the power of early and appropriate intervention.  That such a small change in his sensory input (hearing aids for mild hearing loss) can create such a big change in his and his family’s lives, in conjunction with his other therapies, is testimony to the necessity for all of us to have access to appropriate medical assistance.

Batman is one of millions who benefit daily from affordable medical care.  Batman is one who through the love and devotion of his family, and appropriate medical care will have the opportunity to go out and save Gotham if he so chooses.  Let’s hope that others get that chance as well.