Derailed by My Memories in Autism Land

Derailed by My Memories in Autism Land November 20, 2018
D and his artistic genius burning.

I took my mother-in-law with me to D’s first IEP meeting.

I was thinking about that first time the other day in the evening, sitting in front of the fireplace and giving silent thanks for the ease of the meeting we had that day to finalize his individualized education plan through the fall of 2019 – probably 20th IEP meeting I’ve done for him, if you include the emergency ones with the annual ones. It was one of the fastest meetings we had, with little objection or questioning from me about his “present level of performance.”

I suggested three additional IEP goals, which were immediately approved and added to the IEP (one which caused his current program director to remark, That’s a really good one. I can’t believe we didn’t add that in ourselves, to which I replied, Mom knows some things, too.

With that, we zipped through reading over the accommodations, the amount of speech and occupational therapy his school district would be providing, testing accommodations and a few other sundries. No one even said anything about his school placement, and I looked to make sure “private placement” was still checked. Bing, bang, boom, I agreed and signed the papers right there.

No taking it home to read the fine print.

No battles over sending him back to public school.

No drawn-out discussions about goals or the lack of accommodations.

It was like with only three years to go in D’s school career, everyone had gotten their acts together and had finally figured out how to write a reasonable IEP that worked for D. Either that, or I was too tired and over it all to push and micromanage every aspect of his goals and supports. I like to think it was the former.

Soon enough papers were signed, and we all stood and waited for our turn check ourselves out of the High School before rushing out into the relentless rain, shouting quick good byes to each other over our shoulders. I ran into my car, turned it on and waited for the seat warmer to do its magic as I scrolled through my phone.

I looked back up at the high school, where somewhere inside A was in class, probably Honors English or Honors Pre-Calculus, and felt a strange absence of emotion, a sort of matter-of-factness about the business at hand and the lives we were all living that felt strange and rather empty to me. My Motus Operandi was to feel overly emotional on days like this – IEP days, evaluation days, days when I met with D’s behavior consultant to pore over behavior data, or days when I met with his service facilitator or Medicaid waiver case manager.

All those days, those meetings, those fist-in-your-face moments of intense focus on all the challenges and struggles D faces on a daily basis and what we can do to help, constantly reduced me to a puddle of post-meeting teary and angsty-mush most often released in the safety of the bathroom or my car.

But this time, this particular IEP meeting felt like another check off of my to-do list. I barely lingered over familiar feelings of “this would’ve been D’s high school if … “or, “D would’ve been a senior and A a freshman in this school together if … .“ Nope, none of that today. Maybe I had finally crossed through to the other side of this pity party I habitually buried myself in, a place where nerve endings were routinely laid bare for me to feel all the feels while trying my best to keep it in check from others in my family. Maybe now I would be like some of my other autism mom friends, who were so well ensconced in their acceptance of life as it is that they were beyond the throat catches and unsettling gut feelings of grief that these meetings brought out in me.

Maybe.

**********

I brought my mother-in-law with me to D’s first IEP meeting. It bears repeating because now, 15 years later, I can’t believe I did that. Who brings their mother-in-law, who knows infinitely less than me about the American education system let alone the American special education system, to an IEP meeting?

I asked her about it, to find out if my memory was not tricking me. She had just come up from the basement on the rickety stairlift as I was simultaneously wrapping up work in front of the fireplace and cooking dinner.

Hah, main chalain thain thumari saath. – Yes, I did go with you.

D was with us, right? This is how I remember it, but I wanted to ask you.

Hah, D bhi saath thain. Oosli yain main saath chali thee. – Yes, D was with us. That is why I came also, to look after him.

This was true. With D at age three and yet to be in school yet, with me not knowing if he had to be at this meeting or not, of course I brought him with me. It would be the only IEP meeting he ever attended.

I remembered that first IEP was handwritten. I had walked in to the meeting with tear-stained notes written out by me, things I wanted D to learn, goals I had for him, expectations, dreams, wishes. Pages of my cramped, illegible handwriting that I still have stored in a file to this day. I had no idea how to formulate an IEP or what would actually be in one. There was little by way of prepping for life-changing meetings like this one, little information to be found online in 2003 or books to teach me how this would all work. The IEP bootcamps offered with an annual regularity by my local Autism Society chapter years later were all missing that crucial first year.

I was clueless about everything – what autism was, if my child would overcome it, what support meant, why I should send him to school, who I should listen to, what doctors should D be seeing, what therapies should he be availing, how I would explain all this to our family and so much more. All I felt certain of was my fault in all of this and the weight of everyone’s unspoken accusations laid upon me – guilt I felt from my family that in reality was born from my own heart. The truth of these feelings would take years to unpeel and unravel.

I dug out the file box from the back of D’s closet, in which I still have all those old papers, IEPs, notes, articles printed and saved, doctor’s letters, lab results and a copy of the email Taruj sent to our parents and siblings after D’s diagnosis. There they were, my notes scribbled on lined paper in my laughable preparation for his first IEP. A series of memories came flooding back:

A mother of a newly-diagnosed autistic three-year old and a month-old baby. A beautiful son so well-loved by everyone in his life, the most beautiful and innocent child in the world, depending on us, on me to make all the big decisions in his life. In my heart were the weight of expectations for my son, all the things I so desperately wanted him to learn written out in a sort of frantic, flailing plea to God.

I want D to learn the alphabet, upper and lower case, how to say the letters and identify them.

I want D to learn his numbers, 1-20, how to say them and identify them.

I want D to say Mamma and Baba with meaning.

I want D to learn his colors.”

I want D to learn animal names and sounds – the cow says Moo. The chicken says cluck. The duck says quack.

I want D to be toilet trained.

I want D to be able to say his name and answer to his name.

I want D to talk.

And on and on and on.

**********

I have to put the papers away. It’s too much. Because when I look at the heft of expectations of that 28-year-old, I feel guilty now about the acceptance I have about D’s educational goals as a fortysomething-year-old. Have I become too complacent about what I believe my son can learn and achieve? If I believe there is no timeline on progress, why have I let nearly every academic goal slide out of his IEP to be replaced by functional, practical goals that focus on pre-vocational work, activities of daily living, the ability to work in a group setting, turn-taking skills and continuing communication goals via his iPad.

When did I give up on the dream of him learning to talk? Did I really give up? He had some clarity to the few words he said in his youth. He used to be able to provide the last word of the nursery rhymes I’d sing to him over and over and over:

On top of spaghetti, all covered with … Chee

I lost my poor meatball, when somebody … Snee

It rolled off the table, and onto the …. Flo

And then my poor meatball, rolled out of the … Do

Tum ku yaad hain? D jo gaathai thain thumarain saath? Last word bol thai thain. Do you remember? That D used to sing with you? He’d say the last word?

My mother-in-law’s remark brings me back to the present and dovetails with the memories of my mind, as if she knows what I am thinking. I ask her if she had been worried about him before his diagnosis as I had been, and she tells me she was, that she had always been worried, but that I hadn’t wanted to listen to her.

And, it’s not in an accusatory way she says this. It’s her memories of that difficult time, which are just as solid and shaky as my memories. As much as I want to feel like I carried this grief alone, that no one saw what I saw, this isn’t the truth. I thought I was the only one who saw delays in my boy, who worried desperately and cried in the night over fear and worry at his distancing himself from everything in his life and from those who loved him, only to build his own world that we didn’t understand how to enter.

But we all, those of use who loved him so very much, had our grief and worry to bear.

I don’t sing those songs to D anymore. I haven’t for years. We moved onto other things, as learning one thing was replaced by trying to learn another, and then another, until we are where we are now – trying to teaching him as much as we can to give him more control of his life, to foster as much independent living as possible, and to continue to teach communication skills, albeit now via an assistive communication device and letterboard rather than the expectation of verbal words.

Was moving on from verbalness and academic IEP goals as the years progressed a sign that we were giving up on D, on his potential? On his annual IEP meeting day, where earlier I was feeling at ease with his educational goals for the coming year, I am now derailed by my memories.

I lean over the opening between our eating area and family room, where D is sitting on the couch snapping his Magnatiles together and munching on Cocoa Puffs. Somewhere in the next room, A is scrolling through text messages from her friends, and H is setting up yet another Star Wars battlescape with his umpteen figurines on the adjoining sofa next to the flickering fireplace. I call D’s name and put my hands on his stubbly cheeks, asking if I can kiss him. He cannot see me out of his right eye, clouded over by a cataract. But he turns his right cheek towards me to receive my kiss.

And, I am rendered undone.

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