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.