The Death of Dreams -- the Hope of Other Dreams

My guess is that every biological mother who gave birth to a child who happened to have special needs would readily confess that this is not the child she originally had set her heart on. 

And yet, once that child is born, whatever his or her 'differences' might be, we -- as mothers -- would never want that child to be any different than he or she is -- or that child would not be our child.

I am the mother of four children, and I remember each birth, but more than anything I remember my 4th labor, an arduous 52 hour labor that started Friday afternoon and ended in an early Monday morning (2 am). A labor which became a strange metaphor of my life with that particular child. This was the  birth of my son Benjamin, a 6 lbs 5 oz son who could barely breathe, who was whisked off to NICU immediately, leaving me feeling empty as I proceeded through maternity recovery without a baby to justify my bodily pain and suffering.

I remember Benjamin's first year as an endless series of "what next"- events, seemingly endless emergency room visits, visits to the cardiologist, surgeries, all followed by interminal hospital stays trapped by every imaginable surgical complication. Yet, we all (parents, doctors, nurses, therapists, friends and family) did all we could to keep Benjamin alive -- Benjamin, this  frail baby with Down syndrome -- this mysterious gift from God -- who somehow, I was not sure why, was meant to be kept alive. Truthfully, I was never sure of anything during that first year, or during the second or third year either, other than "Dear God, keep him alive. Spare him!!" 

I pray you'll be our eyes

And watch us where we go

And help us to be wise

In times when we don't know

Let this be our prayer

When we lose our way

Lead us to a place

Guide us with your grace

To a place where we'll be safe

The Prayer - David Foster

Sung by Sissel

One of the greatest blessings as a special needs parents is reaching into the special needs community. You get to connect with some of the most awesome, some of the most loving parents the world has ever seen. 

I have amazing friends who intensely love their sons and daughters with autism, parents with kids who suffer the daily trials of schizophrenia or bipolar disease, parents whose love for their kids is incomparable.

I have witnessed Naval Academy parents (other than myself) and their dedicated love and pride for the accomplishments of their own talented sons and daughters, and it is all delightful and inspiring. However, it compares not with the fierce and dedicated love  that special needs parents feel for their children. It can't, simply because the dedication of a special needs parent is not rooted in the performance of the child. Our parental dedication is rooted  in nothing less than life itself, in survival, something Naval Academy parents need not concern themselves with until their children deploy in the fleet or in the Corps.

In my special needs groups, I have met parents whose wisdom and perspective on life has been my regular reality check. Where these people have connected with me, is where life has felt  most real, and where my pain, my fatigue, and my utter defeat as a special needs mom has intersected with the pain, fatigue, and defeat of others. Somehow in that intersection we have together found the strength and purpose to move on.

As for myself, my continued strength in being a special needs mom of a 21 year old son with Downs has been fortified monthly by these moms of adult special needs dependents. Meeting with other moms who share the daily, often petty, struggle  with both physical, developmental, and mental health challenges of facilitating a meaningful life for my son with special needs helps me laugh. I cannot discount friends who normalize my daily challenges -- a kid who cannot leave the house unless he completes emptying the dishwasher, a kid who cannot start a task and not finish it (however insignificant!)  without throwing a fit. 

Benjamin 

It is not even that we face the same challenges, but more so that we all -- as a group -- expect the unexpected (whatever that looks like???), and just knowing that others maybe understand, somehow makes it OK to have my 21 year old freak out every time he goes near a pine tree, or makes it OK every morning, that he, once again, pretends that one of his stuffed animals -- all of whom are named Benjamin-- once again, surprise!!! has a birthday. In fact, Ben the baby, this week, was 72 on Tuesday, 8 on Thursday, and then again 14 on Saturday. This requires singing "Happy Birthday" every STINKING day, it requires CANDLES every day. DO YOU ever get tired of birthdays?  Well, frankly, my dear, I do!!!!!! (and yes, I don't feel good about it.)

My son loves birthdays because they speak to him of appreciation and love. Birthdays celebrate, they honor -- birthdays are safe. Nothing bad happens on birthdays. Nothing is ever ugly on a birthday, so every day, in quest of beauty, in quest of joy, and in quest of love, he pretends that one of his stuffed creatures -- from Ben the elephant to Ben the cougar -- has a birthday. That birthday is cause for celebration and so the appreciation and love that my son so desperately seeks (and often does not get in public, often does not even get at church!!!), the affirmation and admiration that he craves every day, is formally requested with the simple declaration that Ben the bear has a birthday today -- he is 996. OK, here we go. Hmmmm?? I wonder how I will swing the 996 candles. Ben is obsessed with the number 9 because his birthday is  09-09-1996.

And this all sounds sweet and wonderful, and I am sure you can imagine yourself hugging Ben, lighting some candles (though perhaps not 996 candles, but perhaps 13 candles) and singing happy birthday. but imagine this happening -- as it does -- every single day. YAY!! this is SO FUN. NOT!!

And yet, would you do it?? 

I do. 

And my dearest friends do too -- when we go to their house for dinner every week. And I am eternally grateful for their patience and love for Ben.

Now, imagine, your twenty-one year old son is at the zoo watching the sea lion show. But instead of watching the show, he is obsessively anxious about all the people pressing in around him --- their clapping, their laughing -- it makes him nervous. Are they laughing at him? Why are they clapping? He does not get it.

In fact,  your son  is way too anxious to even look at the sea lion show -- Now, knowing that, would you enjoy the sea lions, or would you be upset right along with your son, anxiously hoping FOR ONCE that he would actually have a good time at the zoo?

Well, he won't ever really have a good time at the zoo. Well, he will say he had a good time when he comes home, but for the time you are at the zoo together, the multitudes, the loudness, the activities around him lead him to be  ever anxious --- and that  is the best he can do. 

So, what about you? Would you move beyond his anxiety, would you be able to enjoy life (at the zoo or elsewhere) in spite of your persistent awareness of his ever anxious feelings? Or would you be trapped forever, hostage to your child's ever anguished emotions, hostage to his experiences, ever trapped in his frustrations? His are chiefly frustrations of being left out. Frustrations that the rest of humanity never quite resonates with  nor understands how he feels? Frustrations that he will always be alone, no matter how hard you try to include him.

 Which parent would you be? The one trapped in your child's experiences,  or are you the one  who is truly free rejoicing  even when your child cannot?

I always wonder where that line lies between the enabler and the truly free parent of the special needs kid. Between the parent who can truly empathize with the child -- at the same time that he or she is truly his or her own person with a life full of joy in the midst of pain-- or is the latter even possible?

Where can my son and I be, where we can truly be us -- he can be him and  I can be me -- and both of us content??  What would that even look like?

There's a place for us -- Sissel

I look at Benjamin, I look at his struggles, his eternal (sometimes-- to me -- infernal) birthdays, and I wonder if he and I, with time, will find that new way of living. Will he ever forgive me all the times I brushed over another birthday with his stuffed animals-- because DAMMIT!! I did not want to light a candle or sing "Happy Birthday".  Will he forgive me all the times where I  just moved on with my morning routine  anxiously to get to work to deliver that kinematics lecture on projectile motion or that lecture on L'Hopital's rule in my calculus class?

There will always be much guilt to go around. Mom-guilt to be sure, and for special needs moms -- an extra dose of guilt.  

No, it is not all that dark. It is not hopeless. Life with special needs in not all impossible and frustrating. What it is, generally speaking is exhausting. It is exhausting because it requires vigilance, because it requires doing things you never dreamt of doing, like telling a 21 year old to wash his mouth after dinner because food is stuck on his chin and upper lip. It requires shaving a 21 year old who has matured physically, but who does not, like most 21 year olds, know how to keep facial hairs at bay. It requires reminding your 21 year old not to strip down and change all his clothes in front of other people -- and that despite the fact that you have told him that umpteen times, but his day program just called you and asked your support on this one detail because they tried and they have failed at impressing on your son, the importance of personal hygiene and modesty.

At other times, it is triumph as your son gets dropped somewhere on the bus, nobody is answering the door, and your son has the bright idea of calling the person on his phone, and because he does so, all is well --- and you are proud for a whole week afterwards and you tell everyone about it TWICE, whether they want to hear it or not.

Special needs is an odd journey, like ENHANCED life. More joy and also more pain and grief.

And where will it all end? I do not know. It keeps on plugging on. 

When I am down and, oh my soul, so weary
When troubles come and my heart burdened be
Then I am still and wait here in the silence
Until you come and sit awhile with me

You raise me up so I can stand on mountains
You raise me up to walk on stormy seas
I am strong when I am on your shoulders
You raise me up to more than I can be

There is no life, no life without its hunger
Each restless heart beats so imperfectly
But when you come and I am filled with wonder
Sometimes I think I glimpse eternity

You raise me up so I can stand on mountains
You raise me up to walk on stormy seas
I am strong when I am on your shoulders
You raise me up to more than I can be

You raise me up so I can stand on mountains
You raise me up to walk on stormy seas
I am strong when I am on your shoulders
You raise me up to more than I can be
You raise me up to more than I can be

- Sissel

USE YOUR WORDS!!!

Both parents and special needs educators insist that kids and young adults with special needs "use their words" when they need something. So have I. I have worked so hard to get Ben not to whine and groan when he meets with frustration. I want him to say, "I need help!" or something to that effect.

I was in the kitchen, and Ben, at my request, had gone in the laundry room to feed the cats. It was early morning and we were getting ready for work and day program, respectively. I was busy packing lunches for both of us when I heard a groan from the laundry room, followed by "Oh, no, I can't!!", shortly after followed by, "I give up!"

With my learned pedagogical wisdom I interject, loud enough that Ben can hear me, "Ben, if you need my help, please ask me. Use your words."  Well, he was having none of that. I heard continued groans from his quarters, so I decided that he would have to fend for himself until such time as he would request my help using my specified verbal formula.

THEN I heard the crash... just as I zipped up Ben's lunch bag. KA-THUNK! I hurled Ben's Minion lunch bag  in an unspecified direction (and later recovered it between the couch and the wall) and rushed back to the laundry room. Behold my son -- sitting on the floor with the folding door to the laundry-room closet on top of his head. Thankfully he seemed relatively intact and unhurt.

As it happened, a broomstick had gotten stuck between the folding door and the door frame, which resulted in Ben being unable to access the catfood.

When his frustrated exclamations did not produce the coveted help from me, Ben  resolved that additional force was required, force sufficient to open the door. And, one must confess, he was right. An additional pull not only opened the door, it actually removed the door from the door frame.

Yup, I need a new door for that closet. And nope, the cats were not fed.

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/

Special Needs -- finding Wholeness through Brokenness

When I initially found out that my son Ben had a serious heart defect, I was devastated. Not only did I not know what it meant in terms of life and death, which was scary, but more to the point the 'scary thing' had happened to me, i.e. My soon to be born baby was not perfect. My general expectation of what life would bring was disrupted. I felt threatened. My illusion that life was something I controlled was shattered beyond how it had ever been shattered before. My life would never be the same. I knew that much. But I did not welcome the change.

What I have learned from 20+ years with Ben is that living with persons who have disabilities, living with them in peace and acceptance is a life-long endeavor to accept life and with it all the brokenness that life inevitably brings. -- And that makes it sound so pretty and virtuous, that we might almost all wish that we dealt with at least ten persons with special needs daily so we could all achieve this wisdom and peace. -- It is not that pretty. It is a moment by moment realization of one's own brokenness in dealing with another person who does not have the judgment to make adequate decisions for himself, and who sometimes makes time consuming or costly or just strange decisions after which you get to pick up the pieces.(And that is of course assuming that it is ALL about you!!)

Actually my paragraph above made it sound a whole lot more broken than it is. I think, in essence, living with special needs is a constant journey of fixing that which could be done better and accepting the rest with gratitude -- all the while remembering that it is indeed ANOTHER PERSON you are dealing with, so all your fixing and accepting needs to expand far enough to respect and uplift another person's wishes and desires, perhaps even above your own.

That is not my forte. At root I am a perfectionist. My Ph. D. Is in theoretical nuclear structure. What I really like is complexity. I am completely detail oriented when I am pleasantly engaged with a topic that interests me -- my preference is to be immersed (nay drowned) in the esoteric. Checking for jam spots on shirts before going out (for the 1000th time) is not my forte. In fact, repeating that which I think I have already made clear to be my express wish can be a great irritant to me. 

In short, I am a not particularly patient person at the root of my being. Just ask my older kids. I was the kind of mom who wanted the dishes cleared and kitchen clean every time after every meal, rooms orderly, essays for school written early, etc. Perfection in grades was not necessary, but doing your best, working hard, being consistently responsible, timely, and pulling your own load were definitely my expectations of the kids. -- Perhaps every mom dreams of that, but I know, not every mom stubbornly insists on it the way I tried to. That worked sort of OK for my regular kids who are all independent adults and who have, by now, derived their own version (or rejection) of whatever I tried to instill in them. --- However, an  expectation of performance can be a deadly trap to get into in dealing with Benjamin.

Benjamin has achieved a great deal of independence in many areas, like dressing and self hygiene, but with releasing those areas to him comes a cost, loss of control, and with that loss of control a certain cost.  For example he chooses what to wear on a given day, but then, as a consequence, I might spot -- at the last minute as we are ready to move out the door -- shorts in January, or huge yogurt stains running down his shirt.  -- His personal hygiene is good for the most part, but a couple of months back, I realized that his clothes never made it to the washer and dryer any more. He was recycling his favorite outfits to wear over and over again. Another time I noted that that he no longer was brushing his teeth, hence I needed to step back into a few areas where I had happily turned the responsibility over to him.

And with every discovery of where he 'falls short', every time I have to reel in his independence and explain, exhort, and impress on him the way things need to be done, I see, not only reluctance to comply, but also pain in his eyes. He winces at being corrected (yes, I know we ALL do!!) because he tries so hard (OCD) to do what he can to be just like everyone else, and having it pointed out (as if life doesn't poke him with it almost every minute of the day anyways) is immensely painful because he knows how short he falls already and how difficult it is for him to achieve even just a tiny fraction of the kind of independence that his siblings so easily achieved for themselves years ago.  -- In the moment, it is not difficult for me to stop, ask him to take off the jam stained shirt and have him go back and get another one. But every single time, after that moment, when I see his reluctance, his closing in on himself, his indisputable sense of inadequacy, I feel broken too, and I wonder why life is so hurried and busy that I always discover those stained shirts at the last minute, as we rush out the door. There HAS to be a better, gentler, more understanding way  that does not include this rat-raced feeling that we are always in a rush to get to the NEXT thing. 

When Benjamin leaves the house in the morning, he says good bye to all his stuffed animals, he pets each cat, he carefully zips up his coat, puts on his backpack, makes sure all the straps are comfortable, and then he leisurely makes it out the door while his driven mother tries to look the other way, lest she ... eh... eh... bursts!

Life with special needs ever holds in tension the stress and hurry and endless tasks that are involved for any adult in America of holding a job that demands your all, combined with the necessary slowing down that is required when dealing with a person whose mental faculties and general character are not capable of doing anything fast.  Ben needs to understand what we are doing next, where we are going, why, and how everything is going to pan out, before things happen. He is neither motivated, nor driven, like me. Why should he be? What is the rush?

His sense of time is limited. He always says, "Next Friday is my birthday", and while it may be true that this year his birthday is on a Friday (he DOES have that fact down), his birthday is in September and it is currently May. Knowing that, knowing HOW he speaks about time and what understanding he has of the future, took me years to understand. I used to always correct that, "yes, your birthday is on "a" Friday, but not "next" Friday."  Never mind. Now I just nod and say yes, your birthday is on a Friday. But I do not correct the 'next'. That word does not mean to him what it means to me.

What made me think of brokenness when I started writing this was the many incidents that occur where hindsight makes me feel broken -- makes me feel like the person who doesn't have the necessary skills and forbearance to get through life contentedly. Many of those occur because of my hurriedness alone. For this past year, we have been getting up at 5:15 to 5:30 on work/school mornings because Ben's school bus leaves at 6:37. Ben needs 1 hour to get up, get dressed and eat breakfast and walk 3 minutes to the bus stop. 

I put my stuff by the door, so I don't forget it (that includes purse, keys, lunch, computer, etc for work).  We get ready to go and suddenly I cannot find my keys Usually they are in my canvas bag, but there is no room today because I am bringing donuts to the lab for a special occasion. Ben has gone outside and taken the kitchen trash with him (as requested) and he is waiting by the car.  I tear through the house. Where are those keys? I could have SWORN I put them in my purse by by the door.

Well, Ben decided to be helpful, so when I finally come outside to check on him and make sure he is still where I asked him to be, I find that he has my key ring hooked on the belt loop on his pants. He wanted to help by locking the door, and more to the point, he always wanted his own keys. We are late now, and I am experiencing a combination of relief and annoyance, since, once again, he took my 'stuff' and moved it some place where I could not find it. I.e. I am organized, I have a million things to think of in the morning in order to make this 5:15 am deal work (FOR BEN who is going to his transition work program) and he grabs my keys and throws off my entire game -- which of course would be so perfect if only other people did not step in and mess it up.-- This little incident resulted in my getting him a house key, which then resulted in him learning to lock and unlock the door to the house, which resulted in him being able to go on the special needs bus and coming home and letting himself into the house with his key, which means that now, if I am running 10 minutes behind the bus, he can still get in the house. -- A major feat!! 

Summer has just begun for us, teaching is over (next week is final's week and then I am done for the semester). The goal, the dream,  my wish, is for a new more contented slower pace, that respects and uplifts the needs and desires of both of us in our symbiotic existence.

But if I have learned anything about living with special needs it is that while I slowly learn to recognize some of his needs and wants and hopefully foster a more meaningful environment for him and for me to live contentedly in, he is --to me-- a mystery precisely because we are so very differently driven. I often see his needs in hindsight and try to repair the damage I do by misunderstanding him. 

One person in a book described the experience of having cognitive disabilities this way. You walk into a store and go to the customer service desk. You hand the clerk a jacket. She takes it and quickly scans the tag, opens the cash drawer and voila! She hands you back your $83.35 cents. -- You take it, and you walk out of the store, frustrated. What you really wanted was to explain that the zipper was broken and you wanted an exchange.  But here you are with the money. -- The clerk was much faster than you, you never had a chance to explain. --- So with Ben. He has many ideas, many thoughts, but he often gets bowled over by people who are fast, people who can talk well, people who mean well (like me). It is the few who take the time to stop to hear what it is he really wants. 

Communication and Isolation

I chose the background picture for this blog several years ago when we went for a visit with my middle son, who had just finished a summer of basic training at the Naval Academy. The picture shows Benjamin, my son with Down's, sitting on the quay where the Severn meets Chesapeake Bay, looking down, all by himself.

Not to paint a depressing picture, Ben is not profoundly unhappy, but I do want to paint a realistic picture, and that is one where, often, Ben is alone: alone in his room writing calendars or birthday cards to imaginary friends, alone in a big room of people where everyone else is engaged in fast and furious conversations, alone with this thoughts, his feelings because they are trapped inside his mind and heart, struggling to get across the twin barriers of Down syndrome and an oral cavity physiology that makes it very difficult for him to articulate anything slowly enough that it is comprehensible to another person, and yet fast enough that he is included in the conversations around him. 

I think of how often little things bother us as people, little things make us doubt ourselves or doubt the meaning of something someone else said. Then I think of how often we turn to a friend, a spouse, a family member for that quick reality check about the little thing that bothered us, and how often that other person reassures us that everything is as it should be, that there is nothing to worry about. I think of how well that settles many a doubt, and how alone, scared, angry, or unsettled we would feel if we did not have those little reassuring conversations.

And I wonder how it feels to be Ben, Ben who can see and hear everyone else producing those many words, who can see and hear others receiving equally many words back, who perceive so keenly how much attention is bestowed on those who can converse back and forth. I wonder what it feels like to WANT so desperately to do the same, to talk and talk, and yet, so much of the time when he tries to do just that, it ends in frustration.  Frustration because the other person inevitably does not understand the words produced, frustration because the other person wants clarification, frustration because the words will not exit the mouth and instead a stream of stutter ensues, that frustrating angering stutter over which Benjamin has no control. 

And so, he turns inward, away from others, into his imaginary birthday parties for his stuffed animals who every morning turn 2, 50, 900, and sometimes 55, like his mom and dad are. One day last week, he took a ream of printer paper from my office and wrote happy birthday on every single sheet in large green letters. (That was the Sunday I was gathering papers for my tax accountant). 

He also recycles birthday cards people send him, and rewrite in black ink over the original writing:  Happy birthday, Ben the dog. Or Ben the cat, or Ben the Fox, or Ben the Koala, or Ben the lizard. You get the picture. Every single stuffed animal is named Ben. And he is their dad, and they are all his sons. The theme here is a recreation of that which he wants just as much as anyone else, independent adulthood and a family, and the birthday theme -- Well, he loves celebrations, he loves events where the focus is on him, and where can he find that more intensely and consistently than on his own birthday?

That is not to say that he does not love other people's birthdays just as much. He knows how to write cards, he knows how birthdays go with cake, candles, and presents, and so, celebrating the day of someone else is equally satisfying because he knows what to say, how to behave, and which components are appropriate for the day.

Most of all, I think what I am saying here is that Benjamin for all that he seems content with his day program, his afternoon programs, and his home life, struggles with his identity as a person with Down's relative to his siblings who have all moved away and are independent, something Ben also wants. He struggles to connect with new people in his life to replace the gaping holes left behind by siblings, who perhaps more than anyone else, understood not only his few spoken words, but also his gestures, his body language and his immediate needs in almost any situation.  -- His rituals (birthdays and calendar writing) have developed from his need to create comfort in a world where he feels both lost and left out too too often. 

As his parent, for all the joy he brings and for all the good loving times we have at home and when we are out in the community, I feel a keen loss in my own limited abilities to connect with him. I remember trying to read books to him, basic picture books or first or second grade readers where we take turns, BUT it is difficult for him to focus his attention on those. They do not satisfy. Neither the pictures, nor sitting side by side taking turns and flipping pages. They don't satisfy because he does not like to read to me, it frustrates him because of the stutter and the incomprehensibility of his speed. It does not satisfy him for ME to read aloud to him either, because it is a one sided conversation where he has no input.

What actually works best in providing him with emotional support and a good time is playing games. He seems most contented and engaged with playing Sorry or Monopoly Jr or something similar because he knows the rules better than anyone, and he knows the words one says during the exchanges in a game: "your turn", "1, 2, 3, 4, 5, 6, 7", "Sorry", "2 dollars", or "Jail". The game is unpredictably predictable, and he accepts losing, getting knocked home, or set back in some way. We play, and even if, for example, in Sorry, he wins, he insists that I play all my pieces till they are all done, and then he declares that I win too. -- The game structure is a mini-life situation that he manages because he knows every rule as well as I do. We are playing on an even turf. We are both equipped with all the vocabulary and the abilities to clearly articulate all words needed for the situation.  

When the game is over, we congratulate each other, assure each other that we are both happy, we pack up the game meticulously, putting rubber bands around cards, putting playing pieces in plastic bags. The lid is put on the box and the box is put back on its shelf. All is done in an orderly fashion. Closure is as important as the game itself. Signaling the beginning and ends of events with Ben helps him cope with when an activity is over and when a new activity may begin. Doing the same clear ritual for putting the game away helps him transition through the idea that we are done and prepares him for the next task.

When, as on occasion happens, a game is interrupted, incomplete, or if we suddenly have to rush out the door and don't put the game away nicely, he can get profoundly upset, more -- some would say -- than the situation merits. I have had people in the past tell me that there is 'no reason' that such a little thing should so greatly upset anyone.

That perspective (while I share it to some extent -- I am no saint, I can certainly get both frustrated and annoyed with Ben's rituals) is in itself limited. After all, if there were 'no reason', Ben would not get so upset. Nobody gets upset for no reason at all. There are certainly reasons. The fact that I cannot articulate a reason for Ben's upset, speaks more to my limitations than to his not having a reason. 

Ben needs rituals and closure surrounding his activities or he feels pushed around and out of control.

And we do too. Imagine your friend coming over to your house drinking tea with you, you have a pleasant time. You walk off to the kitchen to put away the teapot, and you come back, and your friend has left. Her car is gone. --- She omitted the ritual of saying, "Well, my dear, I think it's time for me to get going". She omitted the ritual of waiting for you to come back from the kitchen, the ritual of giving you a hug and letting you open the door for her to leave. -- You too would be upset if she skipped out like that.  

We have many rituals in our interactions with our friends and family, weekly, daily, hourly. We expect them to be honored in our interactions. In Ben's world of communication, he has of necessity developed his own rituals, mostly because ours are syntactically, semantically, and expressively too difficult for him to participate in, given his physical, mental, and sensory limitations. -- It is, I believe, our job as compassionate human beings, when we encounter a person with special needs to enter into his or her terms of communications, into his or her rituals, in order to engage. When we do engage, that engagement is largely a recognition that that other person is a human being. When we fail to engage (as I have done and continue to do with many a person who has limitations I do not understand), we fail, at some profound level, to actively recognize the humanity of that person. -- ... like that friend who walks out of the house after tea, without remembering to engage in the ritual of saying good bye.

Job 29:15  I was eyes to the blind and feet to the lame.