Friday, June 25, 2010

A Little Respect

The other day a miraculous thing came in the mail: a letter addressed to my son Jacob, the one on the Autism Spectrum who has no real friends of his own yet, and never gets mail. The letter came from the Admissions Director of the new school Jake will be attending in the fall. 

Those who have been aware of my struggles to find a school for my son for next year will read these words and know the tonnage of the weight that has now been lifted from my heart.  

Jacob has not been an easy child to find a school for.  Too related for the Autism schools and too Autistic for the LD (Learning Disabled) schools - and also with too large a language disorder for the wonderful Aspergers program that shockingly does exist in our NYC public schools (the ASD Nest program) - he is a classic “falls though the cracks” kind of kid.  Not that we would let that happen to him, but still, this has not been a fun year. 

Let me say that again, because I like the saying of it: my son Jacob now has a school to attend next fall. And not just any school, a wonderful one that felt so right from the moment I walked in the door, and stayed that way through every interaction I have had with every staff member of the school.  

I have felt there to be an overriding (and sadly rare) combination of warmth, caring, intelligence and respect that I did not know was exactly what I was looking for until I encountered it, and then it left nearly every other school sadly wanting.  This school, though private, is neither fancy or shmantzy, but it is perfect for Jake right now, and so I sigh the deepest sigh of relief a parent has ever exhaled.

But I am digressing again (I do that, I have ADD, remember?) and I want to come back to this letter.  A few simple paragraphs. Nothing fancy, or shmantzy, but it made me cry.  Read it here (with a few specifying details fudged) and you will know why: 

Dear Mr. Jacob F.

Congratulations!  We are pleased to inform you that you have been accepted to the Level II class at the XYZ School at (address) for the 2010-2011 school year.

Within the next week, your family should expect to receive an envelope with enrollment materials.  They will also receive a phone call from our main office, asking to set up an appointment for an enrollment meeting.

I am delighted to welcome you and your family to the XYZ School.  We look forward to a successful year and a long partnership.

Director of Admissions 

If you haven’t figured out why this made me cry, here it is: the Director of Admissions sent this letter directly to my Autistic almost 8 year old son. To HIM, not to me.  What that simple act communicates is a world of import, summed up in a simple/not simple word: RESPECT.  

Jacob is being treated like a person, a person to be talked to, not just talked about.  He is not “being placed”, he is being welcomed into a community.  And this makes all the difference in the universe.   

I sent an email to the Admissions Director, telling him his letter had made me cry, and also telling him:

“I want you to know that your short, simple, warm letter so elegantly communicated a level of respect for your students as people and members of a community.  I have not experienced this anywhere else in his education to date, and now that I know it is possible, from this point on I will expect no less for him, ever.  Thank you.”

And this is what I want to pass on, to say to all of us, parents of children with special and with ordinary needs (no, calm down, I’m not calling your kids ordinary, yes, they are all special) of children with and without IEPs (although to quote a friend “isn’t every child an individual, and shouldn’t all Individuals have their own Education Plan?”)….

I say this:  R-E-S-P-E-C-T (nods to Aretha)  Expect and demand no less for our children, ever!

Sunday, June 20, 2010

Fathers Day Without a Father

 Me, Mom & Dad . 1962

It is Fathers Day, and all the posts I started to write about my (mostly) beloved, recently departed father have dissolved into dust, sputtered out, words tumbling over themselves into the void that used to be filled by a man: my father, the photographer Jim Steinhardt. I have yet no distance.  It's too soon, I'm too raw and the tasks of cleaning up his life are still upon me.  

I've spent days in the empty rooms he and my mother so recently occupied sorting though his many thousand photographs.  Lobbing thin notebooks full of his words, thoughts, wild ideas, and great plans into boxes, I am not able to throw them out, but completely unhinged by cracking them open, watching his familiar looping hand growing increasingly wobbly as time took its toll.

I need to pay tribute to him, to our loving, complex, father/daughter relationship, but can say no more today, a day spent with my husband and sons, the menfolk of my family now.

So, if you don't mind, I will point you back to some old words I've already written about him:

Here, the eulogy I delivered at his memorial service, three months ago.

And here, about his last clear days.

And here, a post written very close to the end, about letting him go.

I will always have a father, here with me in my heart.

Wednesday, June 2, 2010

Victorian Gardens Magic

NOTE: This post originally appeared on the sadly closed NYC Moms Blog.

This Saturday I ignored dire predictions of afternoon thunderstorms and took the boys off to that tiny jewel of an amusement park that wings in to perch in Central Park’s Wollman Rink for the summer  (Memorial Day through mid September): Victorian Gardens.  We’ve been taking the boys there a few times a summer since they were three, and though they are nearly too old, too big for the pint sized thrills therein to be found, we’re squeezing one, maybe two more summers out of the place, because there’s some sort of magic there for the boys and I’m not ready to let it go yet.

I remember the first time we went, it was the whole family, all four of us: me, my husband, and the boys.  They were still tiny, not yet quite three, and we rode all the rides with them, grown ups with our bent knees approaching our ears. They loved being on the really little kiddie rides, which were just right sized droplets of thrill for them.  By the next summer, at four, our services were only required for some, not all rides (just the "really scary" ones), and my husband and I stood by in trepidation as Ethan took charge of his twin brother Jacob, making sure he stayed safety belted and didn’t try to climb out mid-ride.  For you see, Jacob is on the Autism Spectrum, and at four was still very un-awake to the rules of the world, needed a minder at all times.

This was my husband’s last foray with us there, however, because while they may be named “Gardens”, it’s mostly a misnomer.  But really, who would come to “Victorian Hottest-shadeless-circular-patch-of-sun-blasted-cement-in-the-city”?  Oh, yeah, it’s surrounded by Central Park lush, but inside: bake-a-rama.  And my husband, well, he melts in the heat. Hates heat. His idea of perfect weather: Seattle. In winter.  So we no longer torture him by making him come drip with us. Because no matter what the forecast, and this Saturday it was “cloudy and cooler with a strong chance of thunderstorms”, it’s ALWAYS hot and humid when we go.  The kids don’t care and I just sweat and bear it because they always have such a wonderful time.  But the whirling fun, while terrific, isn’t the magic, it’s the co-operation. Because you see, my boys don’t always get along, and lately it’s been like oil and water.  And that’s on the calm days.  On the bloody ones, it’s more like oil and flame thrower.  The full history is too long and complicated to go into here, but let’s just say that having a twin on the autism spectrum is really hard.  And being the autistic twin of a brother you love, who currently wants very little to do with you is really hard, too.  Yet somehow, at Victorian Gardens magic things happen.  The boys don’t fight.  They ride rides together, laughing.  Every year Jacob needs less and less help, by now just little bits, here and there, and here, at Victorian Gardens, Ethan is willing to provide it, patiently.  It’s actually something approaching a miracle.  

Thinking about writing this post in praise of our little magic patch of amusement, I stumbled upon something I had written last summer about this very phenomenon. Here it is: 

I am absurdly happy watching my sons be happy today on the flying swings.  Ethan does not hate his brother today.  When I go in to help Jacob onto the apparatus, Ethan shoos me away saying “I can help him, I want to help him, I can do it” so I back off, let him be the big, helpful brother to his twin.  Something I never envisioned 7 years ago when, large as an overripe fruit, I lay about waiting to bust open and birth the twins.  An only child’s fervent fantasy: my children will never know loneliness, they will always have each other.  They will not spend countless childhood hours in front of the mirror practicing funny faces, creating a playmate, an other, out of the reflected self.  I never counted on Autism, on this: that Ethan and Jacob are and are not twins.  Womb shared, room sharing they are.  But partners and age mates not now, not yet, questionably ever, though I’ll never say never.

I still tell the story, though it would horrify him now, of Ethan and I in the car when he was 4.  We had dropped off Jake and I was driving the 10 blocks to Ethan’s pre-school.  He was in the back seat, when he said “Mom, I wish that Jake and I both had had Autism or we both didn’t have Autism.” Tears jump out of my eyes “Why honey?” “So we could be the same and go to the same school.”  Glad he’s facing the back of my head so he doesn’t catch the tears streaming down my face now.  So understanding and compassionate at 4.  Jump ahead 3 years to the fighting, hitting, screaming “I hate you” – where is that sweet boy?  Buried under years of longing and disappointment turned bitter and angry.  Bitter and angry at 7 – how did it come to this?  Too big a burden to be a twin but older brother, yet I ask him to shoulder that load every day.  

And so it continues this year: we have a day of (mostly) peace and fun, stay out till late, watch the first fireflies come out in Central Park as the boys scramble up and down rock "mountains" on the long walk home. And I quietly hold my breath, waiting for what tomorrow will bring.