The Son Who Cannot Ask

Well- this was a surprise. Since I'm collecting my writings, I went to Chabad.org to copy an article that I wrote anonymously back in 2009. It was my husband's concept, which I then put into words, then sent it to my dear friend Nechama G who got it published on Chabad.org. We were completely not ready to put ourselves out there and hadn't even shared Mendel's diagnosis with most people who knew us and would only publish it anonymously. Anyway- I'm not sure why I never checked Chabad.org after publishing it (nearly seven years ago!) but turns out there was a raging discussion in the comments section that I was totally unaware of! Interesting perspectives and all of them very valid. One of these days I'll write a piece about the neuro-diversity movement and my opinion on it. For now, I just wrote a comment on the article. I'm copying and pasting the article, as well as the link. 

It's interesting for me to see how my perspective on Mendel has evolved. Subject for another blog post. But I certainly can see, reading this post, how much of my perspective was colored by the ABA approach, which was our initial path, and how much of it shifted later on when we were exposed to the Son Rise method and other paths. 

Here's what I wrote then, in March of 2009, less than a year after Mendel's diagnosis.

The Son Who Cannot Ask

Like the Jews in Egypt, our son is enslaved.

He looks okay, for the most part. Luminous blue eyes with curtain-like lashes and sweet lips set against perfectly rounded cheeks. A charming build, a strong gait, sturdy three-year-old legs.

But he is not okay, and we, his parents, know and live with this every day. He is not okay, because he is enslaved. Like his ancestors, he is in a prison; his is a prison of the mind, perhaps the heart. 

Mendel has autism. At three, his words come stilted and only one at a time, spoken with difficulty only when he really, truly wants something enough to say it. Sometimes, he stands at the periphery and, just for a moment, watches cousins or peers at play. He laughs to himself and seems to want to join, then darts off in the other direction because he can't. You can sometimes catch him eyeing his older sister, whose name he will not say, with something akin to interest. But she will take his hand and try to dance, and he will wrestle free and revert to a solitary puzzle.

But like the Jews in Egypt, we pray for redemption. It is the light at the end of our darkness; the faint dream that pulls us together when we begin to fray. It is possible, and besides, we believe in miracles. The sea can split; our son can talk. His personal exile is deep and real, but there is, always, the possibility of freedom.

An image comes to my mind: Mendel, at two, with a bucket of wooden blocks. Listlessly, he piles them up until the tower falls. He is not perturbed when his sister knocks it over; there is no emotion as, silently, he begins to build again. An evaluator from the State visits and points this out. "He plays with them too often. He doesn't seem to care." I could not see it then, but I do now: Mendel is enslaved, locked in a routine of his own creation, but one that seems to matter little in any sort of real way. And I think of the Jews in Egypt, enslaved in a routine of worthless, meaningless labor, where the work of their hands would crumble, and the bitterness of their troubles made them hard so as not to even care or hear the call of redemption.

Pesach, the Hebrew word for Passover, I recall reading somewhere, can be read as two distinct Hebrew words: Peh(mouth) sach (speaks), intimating a redemption on some verbal level. And indeed, commentaries note a juxtaposition in the text chronicling the gradual descent into slavery. "And it came to pass in those many days, the king of Egypt died and the Children of Israel sighed from the bondage and they cried…" They cried then, say the commentators, in the aftermath of Pharaoh's death, in a period of national mourning, because to cry for their plight at any other time was forbidden by their captors, and so they disguised their pain as patriotism and called out to G‑d.

This was the beginning of their exile, an exile so deep it limited even the words they could say, and, as the generations wore on, entrenched until it had enslaved their very souls: the thoughts they could think; the things they could feel.

And I wonder: How to pull one out of such slavery? An entire people, generations of children lost to the memory of freedom—how to move them from suffocating silence to a proud nation, G‑d's chosen? I look at my son and wonder the same thing. 

In Egypt, G‑d sent Moses. Moses, man of G‑d, who humbly bridged the gap between heaven and earth and whose personal struggles and journeys reflected the transformation of his people. 

Moses was a spiritual enigma: a man of Atzilut, says the Kabbalah, referring to the highest of four worlds of spiritual consciousness. Atzilut, from the word etzel, near, describes a world near to G‑d, and distant, in so many ways, from the day-to-day functioning most of us experience. For most of us, living in the world of action, Asiyah, life is a pretty simple eco-system of mind and matter. Our thoughts are grounded; they translate easily into the words and actions that fill our days. We observe the behaviors of our world and act according to its norms. Moses lived in Atzilut, in a world of the mind, nearer to G‑d than to the norms of human life. For this reason, Moses spoke with a stutter. Was he imperfect? Was he shy? On the contrary—his thoughts were of a higher dimension; his reality had little to do with life in this world. He was a man of G‑d speaking to mere men, and the line of communication across such distance inevitably blurs. 

A video clip of the Rebbe, stored in my mind: An anguished man leans in to ask the Rebbe's blessing for his son, who is autistic. The Rebbe offers his blessing, and then adds, surely the fact that an autistic child is disconnected from other people shows that he has an even closer connection to G‑d, and spirituality. And I think about our son: he of the intense gaze, the joy he radiates on the holiday of Simchat Torah, the way he probes a Talmud book larger than him and dances to a soulful Chassidic melody. He is a lofty, beautiful soul but it is not enough for me. He is enslaved.

And so I follow the story of our collective redemption, as our ancestors, led by Moses, travel from darkness and boundaries and limitations to freedom. There's no instant cure for a slavery this deep; it's a process. 

I think of the initial breakthrough, as the Jewish people left Egypt and crossed through a sea that miraculously, majestically, parted for them and revealed a dry path to go forward. That undersea world – always there but never seen or really understood – opened up in a stunning split of the water covering it, revealing incredible treasures and an entire world beneath the surface. And beyond a physical display, a spiritual revelation occurred then—the knowledge of a G‑dly life-force was so clear to see that even a simple maiden, says the Midrash, pointed at G‑d's presence on the banks of the Sea of Reeds and said, "This is my G‑d." 

I can picture the point—it is an expression of that which is clear to the mind, and a still elusive pursuit for my son. He is slowly, painstakingly, learning to point naturally and purposefully, and I wait for the day that he will demonstrate clear understanding with the deliberate direction of a finger. In the trajectory of the redemption, it is the point that seems to pierce through the layers of bondage. We can see G‑dliness; it is so real, we can point to it.

But redemption is a process, I remind myself and require no further proof for this than the Jewish people, mere days after the dramatic events at sea, complaining to return to Egypt. They are still enslaved; their souls still gripped by a deep power. It's a one step forward, two-steps back proposition that is all too familiar. 

We know all about the process. Day in, day out, our son sits in a little classroom at home while other children dance and paint in school. He is learning: to imitate, to repeat, to follow instructions and make neuro-connections that he will perhaps one day make on his own. Each step is carefully noted; what he learns, he must then work to maintain. It is hard, hard work but he is enslaved and we have no choice. We wait for his redemption. I clean the house for Passover, pull out the Haggadahs, vacuum the couch and dream of his redemption. He is here; he is hidden; he is stuck. We will work hard, but only you, G‑d, can pull him out.

I imagine Jethro, venerable father-in-law of Moses, traveling to Sinai on hearing of the giving of the Torah, that grand climax of the exodus from Egypt. What exactly did he hear? asks the Midrash. The answer resonates with me and fills my heart with hope. He heard that Moses had been cured of his stutter, and being a man of deep understanding, Jethro understood this event for what it was: a connection, a link, created between an Atzilut consciousness and Asiyah living. Between the world of the mind and the world of action. A great spirituality finding expression in the functions of life every day. It was redemption, he understood, not just for Moses, but for the hidden spirituality of the Children of Israel, for the great G‑dly spirit that lay enslaved, trapped in an exile that did not allow it expression, nor allow it a voice.

And I think, finally, of the Seder, where we celebrate this redemption by speaking of our freedom, of the great and glorious process that wrought a nation of kings from an enslaved and broken people. Our son will be at the Seder, of course. Of the four sons, this year, he will be the one who knows not how to ask the questions. It is for him that the Haggadah says, "Aht ptach lo"—you shall open his mind and explain to him the depth of the exile from which we were redeemed. It was an exile where the soul and mind were enslaved and had no voice-- an exile that needs no explanation for us. Our son lives in exile every day, and we watch, and work, and pray.

This year, we are enslaved. But next year, perhaps next year, we shall be free.

http://m.chabad.org/library/article_cdo/aid/864958/jewish/The-Son-Who-Cannot-Ask.htm

A Rant

Preface: this post completely does not belong on my blog. It is a hormonal induced rant written when I was very pregnant with baby #4 in 2012. It's not about raising my kids per se and it's not a thoughtful reflection. It was meant to be a call to action op-ed in a local paper, and had it been printed, I would have made many enemies and lost many friends. My husband categorically refused, and also helpfully forwarded me a link to the thesaurus listing for "crap". So I'm posting it here, because i just want to get it out. I don't mean to offend anyone's best friends. I just need to say this: 

Here's how I spent my Sunday morning: holding a toothbrush, scrubbing someone's dog's horribly smelling feces out of each of the 800 grooves on the sole of my three-year-old daughter's new patent leather shoe.

I hope yours went better.

I find dogs rather cute, and I think they make great companions. I don't have one; I have three children instead. Walking the streets of Sutton Place with the three of them,  I've gotten my fair share of looks and comments, particularly when they were all under three years old. Yes, dear concerned, child-free, dog-walking neighbor, I have my hands full, and yes- you are right, I have a lot of children. But you sure as hell never had to scrape their feces off the bottoms of your shoes, I can guarantee you that.

My middle child is autistic, but not visibly enough to generate much understanding for his behavior. And the looks I get when he drops into a tantrum mid-sidewalk make me fortunate for my thick skin (no time to work out, obviously) but also leave me wondering as to the fairness of this judgement call from my elegant, dog-walking neighbors. Like any mom, especially an autism mom, I've  had to live with my share of feces and crapisodes (a term coined by an autism mom) but these were all dealt with, calmly or otherwise, in the confines of my apartment. No harm done to anyone but the responsible party--- and that would be me. I had these kids, I handle their excreta. So it goes.

Now why can't dog doo-doo take the same route? You bought the animal, you love the animal, you deal with whatever it produces- in the confines of your home. How often have I walked the streets of my clean and lovely neighborhood, sidestepping fresh smears of canine excrement on the sidewalk and watching someone's labrador urinate into the curb right in front of me or drop piles right in my path? When and how did this become civilized behavior among otherwise exceedingly civilized people?

I raise my arms in protest. This is not civilized behavior. Our streets are not doggie restrooms, even if the owner cleans it up afterwards. An occasional fine for undisposed feces does not make this civilized behavior. You would not be okay if my child did that, and I am not okay when your dog does that.

Lest I bring upon me the wrath of every dog owner in the neighborhood- Im sure I'd be quite outnumbered on the Moms side- I have a solution. Until a dog whisperer cracks the secret to toilet training the canine population, I propose: Doggie Diapers. In a city where dog sweaters, tee shirts and raincoats are part of the cultural code, Doggie Diapers should be an easy sell. Put one on before your daily stroll- it couldn't cost you all that much. Even financially strapped parents manage to buy diapers. I'm picturing styles for females, males, chihuahus, sheepdogs, dalmations-- someone out there will be making a killing. Get the legislation in place first and you have it made.

Doggie Diapers would be humane, discreet and, one may find, a lot more pleasant than lifting your dog's daily deliveries with a plastic-bag-covered hand. I've changed a fair amount of diapers in my years and I can tell you that personally lifting stuff off the floor, gloved or not, is an entirely different and far more nausea-inducing experience.

So: Doggie Diapers. Im busy wiping my kid's shoes these days. Who's it gonna be?

A Different Five

 I actually published this piece in a magazine for special needs parents called Spirit, some time in 2010 I guess.



A Different Five

                      

                      Night comes and it’s the fifth of Kislev- Mendel is five. Five is a big number if you have autism, and an even bigger number if you still don’t speak. For me (-“you” being my son-) it’s just big. HUGE.  So big, that I have successfully managed to drown myself in work and other random occupations to the point where I forgot that it was at all. But, reminded, I am left to face it. The day has come, and Mendel is five. At the dawn (or dusk) of this long-dreaded day, he is, contrary to all expectations, efforts, and imagination, still very much…autistic. Non-conversational, non-social, still in his own world, removed from such concepts as a birthday,  a birthday cake, or presents…and the understanding that his standard “fourt” is no longer the correct answer to the question, “How old are you?”.

 So this is five.  This is Mendel’s five.

 I confess: I spent the night of his fourth birthday a sobbing heap on the floor of my bedroom (because the cold, awful floor seemed that much more appropriate to the situation), unable to get a sentence out to my poor, sad-but-not-sobbing husband, bewildered and angry at the four I saw, and the image of the four in my mind. It was a sad, horrible night and only a slightly better day (because things always look better in the morning.)

But this year- I don’t expect to be there tonight. Partly because Mendel is really progressing now (though he has miles to go) and partly because I’m just too tired (having drowned myself in work, of course) but also, mainly, because I’ve learned a lot this past year. And one of the things I have slowly come to realize, and truly begun to understand deep inside, is that “doing well” or “getting better” is not, and will never be, all-or-nothing. And that waiting to get to know my son until he came for recognition was foolish, and wasteful: here he was, right here, a boy of such sweetness and, yes, joy, just waiting to be seen, as he was, as he is.

Because he is. Even before he speaks, even before he emerges from whatever place he is in- here he is, my son. A sweet, sometimes-impossible-but-always-precious boy.

There was, for a long time, a little boy in my head who was not my son, but, in my mind, should have been. Sometimes, still, I swat away an image of a nameless, faceless five year old boy- he who plays with friends and chats happily, fully engaged with his surroundings. But I don’t know that boy and he is not my son. My son is a person of another cut- but a whole being, a person unto himself, with interests and passions and a singularly unique way of expressing them. Not better, but not worse, than any other child his age- just different.

Happy Birthday, my boy. It’s a different five. But not better, and not worse- just Mendel’s, and mine.

Mendel always looks so typical in photos. This picture is from the summer of 2011, Mushka is seven, Mendel is five, Chana, three. in Stanley Park, Vancouver.

Desperation on a Summer Night

from my old blog, posted in 2010.

A piece I wrote this past summer (I guess summer 2009). It was a very desperate time. I still don't know what happened then; it's like Mendel was teetering on the edge and started to slowly slide that summer. It's not like he was making miraculous progress before; perhaps it was only the subtle shift from three to three-and-a-half that fueled this desperate desire for visible progress, but nonetheless, something, however slight, happened that summer. How? Why? We talk about this all the time but don't know the answer. The worst is that we were aware of it as it was happening and couldn't figure out how to stop it.

Here's what I wrote that summer night:

…So tonight, I get dressed up all pretty and drive an hour myself to a cousin's wedding. It's lots of fun and I can forget, for a few hours, the vacant stare that has haunted me for the better part of a year now and the surging, raging desperation that has become the dominant emotion my husband and I feel constantly. He is not doing better, he is not doing better, he is not doing better!!! Our son Mendel has autism, he must do better. Not doing better is doing worse. The clock ticks relentlessly. I'm always pretty vague about my kids' exact ages and usually need to do a finger count for a precise number-- but Mendel's I know perfectly. He is 3 years, 7 months old. He is closer to four than to three. He is not forming sentences. He will barely acknowledge his siblings. He is not progressing and we are desperate, desperate for a miracle.

Wedding fun over with for the evening, I'm thinking of all this as I drive home, down Flatbush Avenue, toward the Brooklyn Bridge. Stopped at a light, I see a wheelchair, in mid-street, propelling itself against traffic, and upon closer look- it's a black woman, one-legged, wheeling her wheelchair with one arm; the other outstretched to the car windows on her left. A white SUV pulls up fast into her lane and nearly hits her head on. She does not react at all, her face a plea as she looks up at each car, and then she is at my window. The light has turned green, cars are already honking. But good lord, I thought I had it hard! I feel nothing but pity and reach into my glove compartment for the one of the singles that are always floating there.

One bill comes up- it's a twenty. There's nothing else in there.

Now here is where I pause. Certainly I feel pity but I don't have a twenty to spare, and I never give twenties to panhandlers. I think of the bills-- and the grocery order tomorrow, and the doctor bills that have not yet been paid, and the personal debt that rises daily. I don't have a twenty to spare; I really don't.

But here she is- she's seen me fish around, her arm is outstretched, eyes lit in anticipation.

I roll down the window and give her the twenty. "Ohhhh my G-d" I hear her say as I speed off. "Ohhh my G-d."

And, appropriately, it's G-d I'm talking to right now as I turn onto the bridge and drive home. Because you see, G-d, I'm that desperate. Desperate enough to wheel down a barely lit street against the traffic. Desperate enough to do whatever in heaven's name I have to do to get my son back- if I could just drop all the other balls I'm juggling with no consequences and knew what exactly it was I should do. I'm not panhandling in a wheelchair but I'm that desperate, G-d- I'm that desperate!!!

And I gave that woman a twenty and it made no sense. Because you know, G-d, that I don't have it.

So give me a twenty, G-d. Okay? Just give me a twenty and let's get this thing over with.

Choosing Gold

I wrote this for an anthology of writings by Shluchos, Chabad female emissaries, since I am a proud member of that most incredible ( can't find a less cliched word, sorry) global sisterhood. 

I'm not sure my opinions represent the views held by every Chabad woman, but this is my truth. Enjoy. 

 

Choosing Gold

written December 2014

What is it with us and our many children?

Of all the ways in which my life differs from my friends here in Manhattan, it differs most visibly in this. And of all the things I share with my Shluchos sisters, I feel the bond strongest in the sizeable families we have in common.

I write this about a month away from delivering baby number five, G-d willing. I've had three under three, four under seven, and I'm about to go for five under 10. It places me firmly in the “religious woman with lots of kids” category, a place quite distinct from, say, “jetset celebrity with large blended brood.” It's a lot. It's a big family, in a city where “childfree” is a celebrated and common choice, and neighbors bond most frequently over their pets.

The comments, which I won't detail here, come freely. I smile and thank strangers and friends for their concern and well wishes. But if I could stop and chat longer (let's be honest: if one or more of my children wasn't pulling at my skirt or wind-tossed wig), here's what I might share:

Dear stranger/friend, we share so many interests. Like you,  I love this city we live in, its literature and culture and diversity; its independent spirit. In this matter, in the choice I make for more children and hassled, harried decades of raising them, we differ. And so I want you to understand a few things about it.

Firstly, my body is just like any other woman's. It's not a baby machine (a congregant actually called my friend that, on learning of her fourth pregnancy!); it does not pop or otherwise churn out babies. Pregnancy is hard; it's annoying and painful and exhausting and nauseating and all the other things it is for any woman. I might not complain to you , but it's a pain all the same. And yet I go for it, again each time. “So good to see you!” I greeted a congregant last Yom Kippur. “You too!” she said, “I come here every year and every year you are pregnant with another one!” I've been visibly pregnant for perhaps one Yom Kippur of the last eight, but I understand; it seems that way to her. It's part of the whole package: the Rabbi husband, the wig, the modest dress and the children trailing behind. It's how they see us. It's who we are.

So here's the second thing I want you to know: This is a choice I've made, and continue to make. The Rebbetzin, the wig, the whole package- and, especially, the pregnancy. The commitment to the large family, the deviation from the common understanding in this society that two is a perfectly sized family, three is bustling and four is more than enough. This choice... it's not a result of naivete or some sort of mandate handed to me by a Rabbi. It's a reflection of a different perspective on having children, and what families are, and what getting married and building one means.

I can't speak for earlier generations, but it may surprise some to know that, of my friends and contemporaries, many, even those who are well on track for truly large families, avail themselves of contraceptive methods and are making a conscious and deliberate choice each time they go for that next baby. And I want to share a little bit of why I make it.

For one thing, large families are so.much.fun. Not for the adults, necessarily. For the parents, it's joy intermingled with hard work, accumulated sleep loss and inevitable financial stress. But for the kids! Growing up as part of a large family means there's always a party going on somewhere. There are family jokes and wiser older siblings and exciting- incredibly thrilling- events like meeting a brand new baby who turns into a rollicking two year old who brings down the house and becomes everyone's favorite plaything, until the next one comes around. It means big, fun laughing dinners and family memories and holidays and birthdays and weddings and so much more.  My eight siblings are the greatest gift my parents have given me, a gift that keeps on giving, with in-laws who become close friends and nieces and nephews to delight in. Our family is not all rosy; there's petty infighting and rivalry and long standing differences. But there's love, too, and so much laughter. We go off the pill each time and we know what's coming- the chaos, the bills, the bedlam. But we know the love, too, and the laughter. We know the joys. We choose those joys.

And then there's the question of how much joy is enough.

“I hope you have a boy so you can stop!” said a complete stranger to my rounded belly as I held my first little girl-- a reference, I guess, to my Rabbi husband and a presumed understanding of the halakhic discussions surrounding contraception. What a wish. And what a sad reflection of the value our society places on having children.

Because unlike common values, and all hyperbole aside, I see a new baby as the greatest of all gifts one could possibly receive. More than a beautiful home, or more money or a perfect figure, or even- dare I say it- personal satisfaction. I learned this from the Rebbe, who would often share the biblical life story of Chana, mother of the prophet Samuel. She was an influential woman, the Rebbe would say, successful, happily married, accomplishing great things. Why then did she pray so desperately for a child? Her husband, in the biblical telling, could not understand it either. And the Rebbe would explain that she understood that nothing she would achieve, with all her wealth of talent, would compare in value to bringing a new life, a precious and irrevocable fount of possibility, into the world. I learned this from the Rebbe but I understood it when I saw my first child, whose preciousness took my breath away. The moments in which I met each of my children for the first time have been, without any exaggeration, the greatest moments of my life.

Now, I think most, if not all, women feel that way. You don't need to be religious to feel awe at the miracle of new life. What sets us apart, my friends and I, is perhaps that we benefit from the perspective that carries that emotion further, so that we see that there really is nothing that compares to that moment in value. Not anything I can acquire, not even anything I can achieve. If you see it that way, things look different.

A dear friend, a Chabad shlucha in a neighborhood that is home to more ‘one-percenters’ than probably anywhere else in the country, shared with me her community's astonished reactions to her eighth pregnancy. “Seriously,” she said to me, “do I question their need for their sixth car? Or their fourth home? So you collect cars and we collect kids! We like them!”

And we do. And if God gives them to us, and we think we can handle it, we take them. And yes, we need to know that we can handle them. But when you view another child as we do, it's harder to turn that gift down. That's not to say that there aren't some days we might want to place one or two of them in temporary (safe!) quarters, somewhere far away so we can sleep. Every mother has those moments, and sheitel or no sheitel, all the moms I know have them too. But, buoyed by a value system that remembers that first moment of joy and the certainty that nothing could be more precious than this gift of new life, my friends and I come to see the blessings in the chaos; the light in the endless laundry. On good days, with the strength of a good man at our side, we can even see the face of G-d in the little people in our homes, in their squabbles and their journeys and their laughter.

“Not everything that shines is Gold,” goes the old Yiddish saying, and sometimes, when I meet up with a friend, heavy with another pregnancy, or worn out from the intense demands of raising small children, I think of that line. She does not need to explain to me, nor I to her, why she has chosen to do this again, why she's not “done” after two or three. Like her, I know the stress, I know the cost, I know it's really, really hard. But then there's the rest of it: the laughter, the joy, the unlimited possibility that is each new life and the gifts they will, with G-d's help, bring to our world.

To me, that's gold. I choose the gold.

Thanks to my dear friend Chanala K for her valuable editorial suggestions on this piece.

A Lullaby

I think I wrote this in 2011.

Here's what I like to sing to Mendel at night, if big sister lets me (she doesn't like the song). It's a song I remember from high school. I hit upon it one night while rummaging through my mental file of Songs I Like with my kids (they lie down, I sing; they get up, I stop). It is a song for Mendel.
Here it is, with my translations following:
Lo alekha Hamlakha ligmor
Lo alekha ligmor
Ve'lo atah, ben khorin lehibatel mee-menah
Ve'lo atah ben khorin
Sheyibaneh beit hamikdash, sheyibaneh
Bimheira byameinu, sheyibaneh
Sheyibaneh hamikdash
Lots of repetition there but I love the song so much I had to sing it out in words. The song is mostly taken from Pirkei Avot, a book full of grandfatherly life-wisdom and here's one piece (my own translation):
The work is not incumbent on you to complete it
It is not incumbent on you to complete
And (But!) you are not free to abandon it
You are not free
Those are the words from Pirkei Avot. The ending- a classic Jewish prayer added to the above lines by an inventive Jewish composer who clearly knew the thoughts of my heart as I lie in the dark room with my children at night, each with their futures ahead and none so uncertain as Mendel's- goes like this:
May the Temple be rebuilt, may it be rebuilt
Soon, in our days, may it be rebuilt.
So many nights I lie next to my children and sing these words and think of the journey ahead for Mendel. And I think: My darling little boy, there is so much work ahead of you, and it's okay- really, it's okay- if you cannot complete it all. You will do your best to join our world, this world, but if you cannot complete this work, my son- it's alright. It is not incumbent on you to complete.
But! And my voice gets stronger, more insistent- you may not walk away from it. You are not free to abandon it. It is your work; you may not turn your head away and laugh into your own mind or allow your eyes to glaze over, hearing nothing, seeing nothing of this world. It is your work! You must try. You are not free- we will not let.
And then, usually, my voice will break. Because we – my son, and our family, and so many others- we need a miracle. Sheyibaneh Beit Hamikdash- a prayer for redemption, for G-d to save us when all our efforts fail. This is what we need, G-d: Build his Temple and redeem us all.
And then I will end the song because big sister has had enough. And the moment is over, but the prayer goes on.

Mendel's Opshernish (3rd Birthday)

We could barely make a party. We didn't know what to do. In the end, my parents flew in, we invited relatives and a few close friends and did a simple party with a fancy cake at our preschool, which had just opened a few months before. We didn't make a community event of it. We just didn't know what to do.

I got everyone dressed and ready and then went to get dressed myself, while someone- maybe my parents or my husband, I can't remember- took the kids, including Mendel, to the party.

I was in my closet getting dressed and I couldn't find the other shoe of the pair I wanted to wear. And no matter how much I looked, I couldn't find that pair. And I wasn't going to the opshernish- my own son's opshernish, to greet all the guests I had invited- because I couldn't find that shoe. And I really thought it was because of the shoe. I wasn't crying, or thinking about the opshernish, which I had dreaded with a sinking heart for months. I was just looking for my shoe.

After a very long time, I wore my brown heels, not the gray ones that I had planned to wear, and somehow made my way over to the party.

Everyone was already there, and no doubt wondering where on earth I was. My sister said, "Were you going to skip the party?!"

No, I told her. I just couldn't find my shoe. 

~~~

Some pictures from the party. It was simple and beautiful in a certain way.

I love this photo, blurry as it is. My husband is deep in unspoken prayer, holding Mendel. That whole day was a prayer. My brothers are around him.

    My beautiful boy, a few days after his haircut.

Musings

I posted this piece on my old blog, tzadique.blogspot.com. I must have written it sometime in 2009.

Be Careful What You Wish For

When Mendel was a baby- and the cutest, most strikingly beautiful, cuddly and adorable baby you could find- I remember looking at his face (I could stare at it for hours) and thinking how much I wished for him to stay a baby, to never grow up, to always be my precious and beautiful baby boy. I thought that no stage could possibly be as adorable, as delightful and wonderful as this.
Turns out that I was right. Mendel made a perfect little baby and a really cute young toddler but his mind was not catching up as the years passed and his body grew. Perhaps I knew this on some deep instinctive level, even when everything looked so perfectly fine. Perhaps I wished for him never to grow up and face a world he would not understand. I did not know it then, but as the months went on, in the chaos of my life, under everything, I did know that something was wrong, try desperately hard as I did not to admit it. When he was two, almost two and a half, I took my three children in the car to pick up my sister from the airport. She had been abroad on a study program; it had been a full year since we had seen her. In the car, I thought about the changes she would see: our sweet five-month old baby she had not yet met. Our oldest child, now a four year old big girl, bouncing in her booster seat with excitement as I drove. And Mendel. Mendel was a year and a half when she left, a sweet if slightly withdrawn baby. Now he was two and a half, and still!- I realized this in shock- a sweet and slightly withdrawn baby. Desperately I tried to think of the ways in which he had grown over the course of the year. His hair was longer, and more beautiful. He was taller, less chubby. Would he say her name? Would he say anyone's name? Was he talking? He was not. He had not grown. A year had passed; he had not grown.
So I say: be careful what you wish for. I wished my son would always be my precious and beautiful baby boy and here I am: he is now four, with full-blown autism, a beautiful, beautiful boy with skills not much beyond a baby's. My little girl, now two, has surpassed him months ago in language, cognitive and social development. The tiny seed of worry in my heart has grown into a full blown monster, worse and more severe than anything I could have ever pictured when he was two. When I look at him, I see my beautiful boy- but inside, the spirit is fleeting. He talks very little; he is in his own world and seems unwilling or unable to come out. He is adorable and sweet but at four, there's so much more you need to be.

For This

I've decided to take old memories, photos and writings, and place them here on my blog for posterity.

This first post takes me back to the summer of 2008, a few short weeks after Mendel's autism diagnosis. As an over-analyzer of every situation, I've found myself too often feeling like an outsider looking in at my own life. Not so the moment of Mendel's diagnosis, on June 25, 2008 in a tiny room in Mount Sinai Hospital with a tactless developmental pediatrician and a helpless case manager from YAI, plus my husband and I and Mendel, 2.8 years old. I remember how deeply I felt in my body hearing those words, and how I felt the room spin around me, and knew with utter certainty that life would never be the same. Denial came later, and stayed for a while, but I never forgot that moment.

Here is one of the first pieces I wrote about Mendel that summer. I could barely even say the word autism in those days, but I guess I could write it.


  For This
  Written August 2008

There’s a refrain to my life these days, and it found expression in the sudden appearance of an old song I hadn’t heard in years and a convergence of feelings old and new that held me for a moment with its deep power and left me shaken.

It happened as I was carrying my sleeping little boy, not yet three, to his crib late one night. A recent purchase I had yet to listen to was playing on our CD player and the song jumped out at me; it had been years- two decades, at least- since I’d heard it last. “Eleh Chamdah Libi; V’Chusa Na V’al Tit’alem! Eleh Chamdah, Chamdah Libi, V’Chusa Na….” (For this my heart yearns {oh G-d} Have mercy, and do not conceal Yourself..)

Mendel, winter 2007, 1 year old

For this my heart yearns! The melody, at once joyful and pleading, takes me back instantly to the Simchat Torahs of my childhood. In our Chabad House, where my father, red-faced, would dance with abandon together with the motley crew of Jewish souls who would come through the door for just this night, the human moisture created a fog so distinct I can feel it now. The smells of cold cuts and whiskey and sweat were the undercurrent; above them rose a shining Presence, a sense of G-d so powerfully visible through the mist; so strong that I, a child, watched and understood and have never forgotten.

There was no music playing on that holiday on our Chabad Shul; the room was full of joyous song. My father, his voice bellowing, would begin, and the assembled- Israeli ex-pats, long haired hippies, Jews wide-eyed at this celebration of their souls- would join in. Newcomers would dance in the circle gingerly, clutching Torahs tightly, unaccustomed to their bulky shape, and I would watch- see their faces shining with sudden joy at the weight of this scroll in their arms. Eleh Chamdah Libi- I didn’t know what the words meant, but I saw it in the yearning of the faces in the room that night and that particular song, a special favorite of the Israelis who sang with gusto in their native tongue, reverberated in the room and deep into my heart.

For this my heart yearns, I think , staring down now at my sleeping boy, my little son, whose diagnosis is autism and whose beautiful eyes stare out vacantly but with a depth of soul such as I have never seen . The sense of G-d, the people-mist and the soul presence of long ago Simchat Torahs suddenly rose in my heart. Eleh Chamdah Libi! Have mercy and do not conceal yourself! You, so real and present in my childhood, You, who has given me this special soul I hold in my arms, his sleeping face blurred now by my sudden tears, You! Hear me calling out, hear the yearnings of my heart! Have mercy and do not conceal Yourself-Shine Your presence on my little boy and make him whole.

I dried my eyes- as I do so often these days- and laid my son in bed. ~

Some photos from that time

Three under three, summer 2008, just after our move to 54th Street. Mendel looks so typical here even I think I must have been exaggerating his condition. I wasn't.

Chana, about 8 months old, summer 2008. A magnificent, happy baby and a source of so much comfort in those days.