When Your Loved on Suffers from Anxiety Disorder

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

https://www.youtube.com/watch?v=9YStlwOxfXI

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

https://www.youtube.com/watch?v=fXnRf3TQcpk&list=RDyKne5ak9V9s&index=5

Special Needs and Public School

My son Benjamin who will be 21 in September just finished school ... like ... forever!! HEEELP!!

It is OK. We have wonderful plans for him, which I will talk about options for in another post. I want to talk about his school experience and how public school works with special needs in this post.

Now, there are many students who fall under the label special needs. I am restricting my comments to the special needs that I know and understand a little bit about, which is developmentally disabled students, students with mental health issues, and perhaps a little bit less, physically disabled. My son encompasses a little bit of all three. He has Down syndrome, he has obsessive compulsive disorder, and he also has chronic health issues, though they do not prevent him from being ambulatory.

Now, I homeschooled Benjamin till he was 10, partly because I homeschooled my other chidren (initially because of Ben's health) but also because he spent his first seven years with significant health problems that led to scores of hospitalizations with infectious diseases, and also to scores of surgeries.

At age 10 he presented as pretty healthy and also as utterly bored with homeschooling. I had his three older siblings who were reading Shakespeare, doing algebra, and working on their Latin verbs, and Ben, while the other kids took turns teaching him math, reading, and writing, was bored enough one day to take a red sharpie marker and mark off our entire main floor bathroom (walls, doors, tub, commode, sink, and mirror) with little red tic marks -- thousands of them.  Add to that another day where he tried to see how much dog food he could flush down the commode in one flush -- the next thing he knew, public school was on his daily schedule.

We started him in fourth grade at the local elementary school. 

The school was more or less flabbergasted to get him enrolled. They clearly rolled their eyes at first, wondering why this mom shows up with a kiddo of age 10, and I think they expected he had no skills and that he would have suffered academically from utter neglect. (Perhaps they had experienced kids coming in like that in the past.)

At any rate, we had a series of meetings and established what services Benjamin would benefit from in terms of speech, physical therapy, occupational therapy, hearing impaired services. The teacher was a young enthusiastic woman with a sunny bright smile and a large heart. Ben instantly took to her, and for two years we walked him back and forth to elementary school.

He loved the activities and attention and other kids at school so much that the week after he started school, on a Saturday, we were woken up by the doorbell ringing. Outside stood a 10 year old girl holding Ben's hand. Apparently Ben had gotten up, decided it was time for school, walked over there and nobody had been there. This girl had been out, she knew Ben from class, so she walked him home. -- 

And so we had to have the talk about what it means that "it is Saturday." -- Local school keeps kids like Ben safe because everyone in the neighborhood knows him, and the few times he has been lost, people already knew him and walked him home. 


I won't detail all of Ben's years in school, but I will mention that as he grew into his teen years and became 'less cute' and more suspected as a growing-larger teen boy, while his heart was still with the 6 year olds on the playground, the one singular place outside home where he was unconditionally accepted was in the public schools he attended. Always welcomed enthusiastically by teachers, para-professionals, other students with special needs, as well as by regular students at the school. 

It is thanks to public school teachers who worked hard to connect us parents (via monthly Saturday morning breakfasts and occasional dinners associated with school plays) with other parents that I even after Ben is out of school have a strong parent support network consisting of two different groups that meet monthly. It is thanks to those teachers and that community at school that Ben fostered friendships outside the special needs classroom with students who were his regular lunch buddies in his "circle of friends", students he is still in touch with, students whose parents are still my friends. 

But more than that, public school helped Ben in so many ways. Apart from just helping him learn to read and write (on top of what my daughter achieved in homeschooling), having amazing math programs that Ben just adored (he still works through 1st and 2nd grade mathbooks just for fun in his spare time), in addition to the hearing impaired support, the PT, the OT, the speech therapy that helped us get him an excellent communication device, in addition to all this, school helped Ben

1. work well and hard in projects he was capable of contributing to

• greeting card making
• setting up and taking down dinners for school staff
• landscaping
• paper shredding
• food teams (sandwich making, cookie making -- hygienically!!)
• walking dogs for Humane society

2. School got Ben out in the community on a weekly basis, exposing the community to these students in a positive well regulated way, and helping our special needs students be active and confident in the community

• museums
• zoos 
• bowling
• parks and recreation centers
• grocery shopping
• restaurants
• Christmas shopping for parents and siblings

3. School has helped Ben regulate his emotions when he gets anxious not only by therapy and psychological intervention but by working with me, finding a strategy for de-escalation, and for giving Ben simple coping mechanisms (safe place, coloring activity, etc) that help him get through his day with a minimum of emotional upset, and a maximum of functional hours.

4. School has also accepted Ben in spite of his deficiencies, his flaws, and his -- let's face it -- utter lack of value in a free-market competitive economy. Public school has that attribute that it MUST accept all students, and it has welcomed Ben, worked within the federal law regarding special needs, and done a world of good for my son.

Is it perfect? No! I do have friends who are parents of students with special needs who have not gotten from the schools what they had hoped for their students. I will not discuss their cares here, since they are not mine.

My hope with school for Ben was that he would find a community where he could learn and grow, where he was accepted, and where he would enjoy being.

Same hope I have now for the new adult programs that Ben is going to be in starting June 1st. I want him learning, growing, accepted, and happy. If he can, as I hope he will, hold down some part time (paid or unpaid) employment with group support, that too, I hope is in his future for a few hours per week. (He calls it his new school, and that is the highest compliment Ben can bestow on anything).

In conclusion, I cannot say enough good about all the ways in which Ben was affirmed and loved by super-energetic teachers who personally cared for him and his (sometimes difficult) emotional and academic well being.  And it takes quite a person (or two) to teach those who are not only developmentally and cognitively challenged, but who, as is the case with my son, also has a mental health component that can totally lock him up and have him stuck, impossible to deal with because of his anxiety and inability to move onto the next task. 

School to Ben has not ever been 'a chore', nor was it ever something he wished would go away so he can go into summer vacation. On the contrary, he has always dreaded summer and wished it away so he could get back to school, where he is loved, affirmed, challenged, employed in meaningful activity -- where he is among friends, peers, and professionals who honestly care for him and want to be with him --- unlike, for example, church, which is a mixed bag where some accept him (bless them!!) some avoid him, and some actively can be frustrated with who he is, what he does (or what I let him do) even if they try not to mention it too much. 

Not so with school. In high school Ben  has marched triumphantly through the hallways during breaks or lunch, getting multiple HIGH FIVES or fist bumps from scores of students, most of whom are pleased to give him 5 seconds of their time, students who may not all achieve so highly themselves, but who thanks to integrated high schools have been blessed with the smiley presence of my son Ben daily. 

Our public schools serve ALL students of ALL needs, and I think this is an important point to make. In many cases there is no other place for them. The more severe and specialized the special needs, the less likely that the needs can be met at a private or a charter school. 

During the 2013-14 school year, 6.5 million students—13 percent of the public-school population—received an IEP.

Some things may be able to be run better when they are run by business men or in a business manner with competition in the marketplace, but special needs are not one of them. Special needs COST us, the tax payers, but it is what we do because we care about each other and we care that each and every citizen (rich or poor) finds a meaningful place in our society.

 "(S)pecial-education programs are costly and provide few tangible benefits for school districts. School districts are rewarded for giving high-achieving kids ... Good students raise test scores, increase the ranking of the school, and keep property values high. Special-education students are red marks on the ledger."

https://www.theatlantic.com/education/archive/2017/01/is-the-bar-too-low-for-special-education/514241/

A more Accurate Portrait of Down's

I recently was surfing the Internet with the search terms Down Syndrome, Adult, Mental Health. Such searches usually occur to me after times when my son has been exhibiting a series of behaviors which are more challenging than his normal-but-still-challenging behaviors. (In the past three weeks we have had to deal with multiple behavior issues at day programs, including, but not limited to, running away, throwing things, hitting people, wiping an entire piece of speech software off his iPad,  turning off his GPS watch -- and very cleverly done on the day when he later ran,so we couldn't locate him.)

Never a dull moment. 

(There is still relatively little written on the Internet and in books about the life of adults with Down's and even less on mental health issues; however I did procure the only published book in the US on that topic and I am happily reading along now.)

But that is not what I wanted to talk about here, what I really wanted to talk about is the 'face of Down's' that so frequently shows up on the Internet. 

Most searches about parenting a child with Down's will bring you to blogs by mothers of cute toddlers and preschoolers with Down's who write hyper-positive blogs about how their kids are just like any other kids. And that claim is both true and not true; it all depends on the angle you take.

Yes, your son or daughter with Down's needs to go to the doctor on the same schedule as your other kids and he or she will need shots just like your other kids. He or she needs clothing, boots for winter, food, and yes, love and quality time, just like the others do --- persons with Down's to paraphrase the Jew in Merchant of Venice: they laugh when you tickle them, they bleed when you poke them with a sharp object... Etc. In short, they are human.

So, where is my 'but'??... You knew it was coming. 

The 'but' is this --- yes, you take your son or daughter with Down's to the doctor regularly just like you would any other child.But in the cases of a reasonably large percentage of kids with Down's you as the parent will become best friends with the pediatrician, the endocrinologist, the cardiologist, the orthopedic surgeon, the ophthalmologist, to say nothing of the otolaryngologist. Kids with Down's have more health problems -- on the average-- than typical kids. That is time-consuming, all those times in waiting rooms, all those times in the emergency room (for some of us), all those therapies and extra check ups. It is NOT just like having an ordinary kid.It is kid ++, the deluxe needy model.

Yes, kids with Down's still need education and they are going to school just like other kids --- but that learning they do in school is much slower, and every piece of learning they acquire tends to be concrete, needs to be broken into teensy bits for them to comprehend it, and it also often requires special education and one-on-one in order for learning to take place.  Again Kid ++, more time consuming, less intellectual yield. 

Is my son with Down's just like my other three kids?? Yes, he is human, he looks like them, he has likes and dislikes... But also an emphatic no. All three of my older kids are financially independent, one is in grad school, one is a newly minted officer in the Marine Corps, and one is finishing his last year before getting his bachelor's in physics. My son with Down's will never get a bachelor's degree. He will never become fully independent.

I would even go so far as to say this, that the early years with Down syndrome (in spite of all the medical stuff --- and we had way more of that than most families with a kid with Down's get to have) -- the early years were easy, real easy compared to late teen and early adult years. The transformation into adulthood has been rough. My son has seen his siblings go and gain their independence and he struggles with the knowledge that he cannot do the same and never will. It depresses him.

People and their reactions to him have changed and I think that has been the hardest part. When he was little and cute, people loved to affirm him and let him know how cute he was, and let me know how he 'really was just like everyone else' (which by the mere need to mention that tells you that they really did not believe what they were saying).  Once Ben got to be about 15 or so and started looking like a teen, grew past 5ft, that changed.Cute was gone and left was a somewhat awkward looking teen with Down's with the requisite teen complexion issues off and on, a teen who cannot speak, whose lower jaw protrudes 1.5 cm beyond the upper lip, and whose features say Down's all over them. 

People -- the general public -- are moderately 'scared' of him, as in, they do not know how to address or greet him, and if he acts strange, like gets upset when a crowd is laughing because he thinks they are laughing at him, they retreat awkwardly away from him, or they actively worry that he might hurt someone or something and they may come across a slight bit aggressive because they worry that somehow they have to defend themselves against this strange boy with Down's.  Benjamin is nothing, if not emphatic.He immediately senses the estrangement and it produces anxiety in him, extremely high anxiety. That causes him to talk to his stuffed dog, or to the wall, or both.At any rate,the more nervous he is the more he self talks and the more agitated he is when he self talks. 

Down syndrome is more than cute kids growing up to near-normal perfection where one almost 'cannot even tell that they have Down's'.

I suppose these hopeful myths are told in an attempt to soothe brand new parents. Perhaps, also, a certain subset of the population labeled 'parents with kids with Down's'  crave that assertion of normality for their new babies with Down's,  even if deep inside we all know that it is not true at all. To raise a kid with Down's is to raise a kid who likely will have more health issues, who likely will be significantly slower in learning material in school, and who likely will never get past simple concrete cognitive skills. It is to raise a kid who likely will always be dependent on someone else to handle his or her finances, health, and living expenses and situation. 

It is not a picnic, folks.And given that close to 50% (if I got this right) of persons with Down's acquire some mental health diagnosis during late teen early adult years, the job of parenting a teen or adult with Down syndrome can at times be extremely time consuming and also exhausting. 

Why this more accurate portrait? Well, I recently acquired "Bright-sided:  How Positive Thinking is Undermining America". Positive thinking to the point of not acknowledging how difficult it can be to raise and live with a person with Down's can leave you thinking, when you get into the teen years, that there is something wrong either with the way YOU are raising YOUR kid, or perhaps something wrong with your kid with Down's. I found it challenging and completely unexpected to have a mental health diagnosis added to an already impressive list of diagnoses for my son, not to mention I was SO unprepared for such a turn of events because everything I had read, all the positive parents I met, did not squarely face their issues publicly. 

We are conditioned in America to only talk positively, so there are few enough places where one can be honest about how things really can be on some days, and the result is isolation  and inability to know how to deal with the issue. 

It is not easy to raise a kid with Down's--- not even in the toddler years. It is even more difficult in the teen years because of the many natural 'teen' issues that are difficult with typical adolescents which are then even more difficult with teens with Down's because you don't know how to deal with them, the person with Down's doesn't know how to deal with those issues, and worst of all THE WORLD does not want to acknowledge the physical, emotional, and least of all sexual maturity of persons with Down's (who appear in the image of the unwashed masses FOREVER CHILDREN). 

I am not trying to spell doom and gloom, but I am trying to spell reality out here. The cute toddler is gone,  the 'almost like us' grade school kid is gone. What is there now is a young adult, yearning to have his own place, yearning to make his own decision, yearning to have a girl friend and move far away from his parents like his other siblings have done --- but unable to do so.

Navigating the waters of young adulthood, finding the balance between either cracking down on immature (8 year old) behaviors in a person with 20 years experience or letting that 20 year old be an adult in his own right, that is like untying the Gordian knot (and no, I do not recommend using a sword!!).  It takes the wisdom of a Solomon and the patience of a Saint.

I am neither. 

A Confession

(Inspired by a writing exercise in my special needs writing group.)

 

Domestic pain can be searing and it is usually what does us in. It is almost indigestible. ~ Anne Lamott

Dear God, 

Hear my confession! I was here last month. Same story, second verse, much the same, an not much worse. But not much better either. 

"Sign the book," Ben demands in his non-verbal way by putting it on top of my bowl of oatmeal, pen attached. 

"No," I repeat. "Ms. K. Said she was out Thursday and Friday. Today is Friday, there will not be anything to sign. Put the communication book back in your backpack, we need to go, or you will miss the school bus." I push the book across the dining-room table. 

He pushes the book back towards me. 

"Ben," I says, "it is time to go." I shove the book in his backpack, yank up the zipper. Then I guide his reluctant footsteps out the door, down the stairs, and into the car -- his face, downcast, scowling, refusing to look at me. 

"It's the OCD, it's the Down's", I think to myself. "Every morning has its routine. One of the routines is for me to sign the school communications book during breakfast, then I hand it to him, he reads what I write to this teacher, nods with a smile, and puts the book in his backpack -- but not this morning..." 

We wait at the school-bus stop in silence. No hugs, no "I love you"s or goodbyes when the bus pulls up. 

"Poor sub in his class room today," I think to myself as I drive down the road towards Lakewood. But... Why did I pick this battle? I could have just signed the #@%& book. I could have written anything in there, even if the teacher did not write any notes to me yesterday. If I had done so, our morning would have turned out differently. Why didn't that even occur to me? 

And then... the usual conflict in my mind -- the familiar spat where half of me wants to accommodate his OCD habits and the other half of me wants to stretch his flexibility -- begins to run in its familiar grooves. When to push, when to yield? For the next twenty-three minutes, as I stop-go-stop- go down Wadsworth Parkway, I feel like a louse. As Anne Lamott says, "Domestic pain can be searing and it usually is what does us in." 

Fast forward to Saturday night ... Ben opens his backback after a weekend sleep-over, and the first thing he hands me is the $#@$& communications book. 

I sigh, but this time I am prepared to sign. After all, it really doesn't matter, does it?

Ben flips through to the very last page, and holds it up to my face -- close, very close. I grab my reading glasses and pull the book out till I can focus.  

Entry -- Thursday: Ben had a great day, we made muffins. Signed Ms. Miller (substitute teacher).  

Entry -- Friday: Ben enjoyed frisbee and a math sheet. Signed Ms. Larson (substitute teacher).

Yes, my son has OCD and he has Down syndrome. He likes routines. But ... He is so much more, and I do not always believe or remember that. When Ben acts, sometimes I see OCD acting, or I see Down syndrome acting. 

When he looks at me, what syndrome does he see? What label can explain my inflexibility, my blindness?  

God have mercy on me, and help me 'see' -- really see -- so I don't inadvertently inflict pain where none is needed, not for him, and not for me.   

--- Amen.