There's a place for us,
Somewhere a place for us.
Peace and quiet and open air
Wait for us
Somewhere.
There's a time for us,
Some day a time for us,
Time together with time to spare,
Time to learn, time to care,
Some day!
- West Side Story
I hear groans from the other room: "Oh, no." "I can't do it!" " Dang it!" "It won't work". It is my son. He is wrestling with something. He has wrestled so long now, that we might be late if I do not go check it out.
And yet, I don't want to be the trained puppy who comes running to rescue and take over whenever Ben cannot do something. Or, at least, if he needs help, he needs to seek me out and ask for it, or at least 'gently' holler from his room to inquire if I can be of some assistance.
But he doesn't. So forget all the wonderful principled advice from the psychologist (after all, she does not live with my son minute to minute), I trot into his room. He is sprawled in his bucket chair, wrestling with the zipper to his pants, which is stuck down.
"Ben," I say in a kindly voice, "do you need help". He groans. At this point, I witness the interior battle. He doesn't want help, but he needs help, and he hates asking for it. It is all so humiliating. I understand that. In fact, I am not trying to humiliate him when I insist that he ask for help. It is more that I don't want to turn into the co-dependent accommodator who comes running to fill his every wish whenever he sounds like he is in a touch of emotional discomfort over a task he cannot complete by himself.
The balance -- the balance -- the balance. I cannot over-react to accommodate when he is upset, but no more can I stand there with my arms crossed, haughtily demanding, "And WHAT do you say?" in order to get him to solicit my patronage.
"Do you need help?" I repeat. " I know how tough zippers can be. Let's take these dumb pants and throw them out and get you a pair that work the way they are supposed to."
Problem solved, and we happily trot out to our oatmeal and pineapple spread.
Mornings are key. A morning off kilter often leads to a day off kilter. And I know that many of you will echo that this is so for you too. It certainly can be for me, however, it is a matter of degree. Persons who suffer from anxiety disorders trigger easily and recover with great difficulty over seemingly small matters.
Our mornings go like this (on an ideal day in the summer when I am off from teaching). I get up, put on my work out clothes. I put on the classical NPR station in the livingroom, and I wake Ben to Mozart, Back, Strauss, or Rimsky-Korsikov, and while he takes 45 mins to get dressed, I take my morning walk. I return, light the candles on the table and start cooking steel cut oats, which we eat with a bowl of fruit on the patio under a beautiful green maple tree with the morning song of birds nearby. It is a lovely treat, except, not every morning goes according to plan.
From Signal to Reaction
Our environment signals to us (people, weather, objects, circumstances) and we have to take those signals in -- that requires sensory processing, i.e. we process the information that hits our senses. What is it? DOES it hurt? Do I need to move away? Does it feel good? Do I need to come closer? In Ben's case, he has a delayed neurology that results in him not just getting burned by something hot (we all do) but taking so long to let go that he usually ends up with more severe burns than most of us would get.
Once that information has registered on our senses, we need to cognitively process the sensory information that we received. Our brains need to evaluate the information and what it means. (Executive functioning). This requires judgment. This requires some level of awareness and a sense of the bigger picture.
Finally, after evaluating what some sensory input means, we need to decide how to respond or whether it is necessary to respond. And once we have decided to respond, we need to monitor, evaluate, and modify appropriately the intensity of whatever emotional response we decided to put forth. (Emotional regulation)
And all three steps happen in a matter of a split second (Sensory processing, executive functioning, and emotional regulation). When you think about it, so much can go wrong in what we decide in that split second, as we all know when we have been in an unexpected threatening situation. Thankfully, most of us are well tuned in to life's daily input and make reasonably sound and functional choices when we are in a routine.
For Ben, routines also help tremendously. When he feels in charge and in control and feels like he knows what he needs to do next, his anxiety is lower, and things usually go well. It is just that so much of his life is not under his control, so much of what happens lies out side his immediate scope of judgment and ability to see fully, that he is more prone to have something in one of the three steps (sensory processing, executive functioning, or emotional regulation) go wrong on any given day.
It is Simple -- Just Behave
He should just behave, some say. It is not that hard. But I would maintain that unless you have walked a mile in his shoes, you have no idea how hard it is, how many times he is misunderstood or misunderstands a situation, nor how many times his most well-meaning attempts to do the right thing ends up getting him "burned", metaphorically speaking.
Trigger
For those who have sensory processing disorders, or who are slow or who lack judgment on executive functioning, or who perhaps lack proper emotional regulation, a simple event, like sitting next to a person who waves his hands on the bus, can turn into a major emotional event.
It happened a million times in the past, but one example, when he was new to a program he got on a bus where a person Ben did not know, a person with poor motor control, was waving his arms. Ben who was sitting in the seat right in front of the person, felt threatened and slugged the person in self-defense. (Much like Don Quixote and the wind mills). -- Now, of course Ben should not slug people, and of course he should have "used his words" to tell the person that the person was getting in his (Ben's) space, after which, Ben should have alerted the staff person on the bus that he was getting nervous because of the arm waving, and then politely requested to be moved to a seat a distance away from this person with the waving arms.
But think about how many steps of processing and judgment it takes to go from "Oh there is something bumping the back of my head. It just hit me again. I don't like this" to "Ms. Kim, would you please come over here, observe this, grant my request to move to another seat, and then help me get up with my back pack and my ten other pack-ratty things I bring to my program every day, so I can occupy another seat??" Seems much faster to just turn around and slug the perpetrator.
This sort of incident can easily be regulated long term by where Ben sits. It also is resolved once Ben knows the program participant who waves his arms and knows that is just how this person is. Then Ben can choose to sit near or far from the person depending on his own comfort level, but that initial encounter is not one that anyone necessarily can foresee or prevent. It just happens. And there may be many such incidents weekly when you have a loved one with an anxiety disorder.
Walking on Egg Shells
I shared in a previous blog how Easter morning turned into a melt down disaster because Ben did not get to ring the bells. We went home after the service, calmed Ben down (sometimes that is a matter of a few minutes, and sometimes he sits and stares at the wall muttering to himself for HOURS, depends on his level of obsession and on how well I am able to redirect him, or how well he manages to redirect himself).
And that is the tough part of living with a loved one who has an anxiety disorder or some other mental health issue. Their ability to process, understand, and communicate with reality accurately varies, and when that ability fails them at one of the three stages, conflict often ensues.
Persons living with the person with the mental health issue are often (usually) operating at some level of stress because the loved one cannot be counted on to be in a logical, rational state of mind. And even though it is not ALL THE TIME that the illogical irrational state of mind is present (thank God!), you do not know WHEN the other shoe is going to drop. THAT is where the egg-shell existence can at times be a more or less permanent state of affairs.
Developmental Disability and Anxiety
I have had people ask whether it is harder to have a dependent with Down syndrome who also has an anxiety disorder -- in contrast to having a loved one with a typical IQ who suffers from an anxiety disorder.
My answer is -- depends.
I remember many years back helping a friend who was going through a hard time. I did not know this friend super well, but I thought cheering her up with some entertainment, taking her out would be the ticket. Little did I know what hid behind her exterior in terms of anxiety. My invitation was accepted somewhat reluctantly with a series of what ifs, ranging from mosquitoes to sunscreen, to water to discomfort sitting on the ground, and then finally, the morning before the afternoon when I was going to come and get her for the 2 hour event, she called me and she was crying. She had not slept all night, worrying about this little trip/walk/outing we were going to take in the outdoors, and she felt so sick and so headachy worrying about it, there wqs no way she could go. -- I was completely taken aback. I had thought I was cheering someone, and instead I had made her suffer for a whole week worrying about how she was going to say no to me. This is a woman of high IQ, very accomplished in her own field, but completely unable to function outside her own bubble. It took me a while to get to compassion because I was so dumbfounded, so ignorant that it was possible to suffer like that. Back then, I thought she just needed a grip. Nowadays, I know, there are people who suffer like that, who are deeply anxious about anything familiar, and it is not just a matter of exposure for those people to reintegrate into 'typical' life with all its hustle and bustle.
I think in many regards I prefer dealing with my own Benjamin rather than with adults with typical IQs. Benjamin does (at times) sport the stereotypical friendly Down syndrome disposition and he CAN be easy when well grooved in his routine. In addition, I full guardian powers and I can to some extend 'displine' by granting and withholding coveted events and possessions. I do not have any issues with substance abuses, since Benjamin lives in a tightly regulated home without access to stimulants. He goes to programs that are wholesome and spiritually based, and over all, his situation is well enough controlled that I can ensure good sleep hygiene, daily exercise, a little academic stimulation, and an excellent diet at all times.
If you have a loved one of typical IQ who finds him or herself to fall in the possibly 20% (NPR says) of the population that struggles with some kind of mental health issue (depression being the disease of the 90s and anxiety being the disease of the new millenium) you may feel more free because you don't have to drive them or baby sit them every minute, but on the other hand with those freedoms that your loved one with mental health issues has also comes access to all sorts of behavior, ingestibles, and activities with less than ideal companions that can in extreme cases lead some persons with mental health issues down long winding self-destructuve paths that you can only witness, lament, and take the brunt of when they return and in whatever manner they choose allow all the ill that has come from their choices to spill all over you. And then you sit, off and on, during the bad times with this loved one with a tremendous burden of how to set boundaries, what to put up with, and generally in the usual conundrum of how to be loving to this person for whom life is always a tremendous struggle -- so much of it seemingly of the person's own doing.
I don't think there is a good answer here, and we never are given a choice between the two anyways, unless we are the kind of saintly persons who open up our homes as host homes to persons with mental or cognitive disabilities.
Summa Summarum
I wrote this to bring, perhaps, a teensy bit of clarity around having a person with special needs who also has a co-morbidity of a mental health component. It is a very common combination for persons with Down's. 50% develop a mental health component as adults -- because, it is just so hard to fit into a society that is based on competition and the free market, where the fast, the smart, the industrious succeed, the rest of us take second or third row, and the weak, the old, the sick, and those who just never were able to find a groove where society welcomes them, are just left behind to flounder. Some of that floundering is done dysfunctionally, in a repetitive, somewhat self-destructive mental illness groove where those people, to the best of their abilities, try to feel just OK about themselves some of the time.
God on high
Hear my prayer
In my need
You have always been there
He is young
He's afraid
Let him rest
Heaven blessed.
Bring him home
Bring him home
Bring him home.
Bring him peace
Bring him joy
- Les Miserables
