To Maria from Alec:

Hey Maria!!!

Writing some stuff this morning.

Wanted to ask…

What was Ethan’s original diagnosis?  Like what was it the doctors told you first?

When did you figure out that it was lack of oxygen at birth that had an effect?

You may have told me and I was dumb and didn’t write it down. I just want to get it totally right.

Thank you and hope you’re well!!!!!

-Alec

From Maria to Alec:
Original diagnosis was mixed developmental delay. He would have been given Pervasive Developmental Disorder NOS (the precursor to current Autism Spectrum Disorder) but he was well related to his parents. The relational piece the desire for relationship with us and the need for it the ability for the back and forth was not consistent with traditional diagnosis of autism.

Later Pervasive Developmental Disorder (Not Otherwise Specified) was offered.

We didn’t learn that the anoxia could have been the culprit until his most recent evaluations at 18 to get him on Medicaid and to determine functioning. This is a lengthy process with endless testing. It happened at the Brooklyn Developmental Disabilities Services Office on Fountain Ave in Brooklyn. Literally its built on a landfill. 1960s brutalist architecture, low ugly pored concrete.  Craig mentioned a recent article in NY Times about a man who doesn’t want to leave the center. You can google it and see images.

In any case, Ethan and I went there for the tests that would determine whether or not he qualifies for the services he gets. These tests determine someone’s qualification for services based upon what is called in the business and ICF-MR level of care. Someone has to be needing a level of care that a person with moderate to profound mental retardation. This determination is based upon either a diagnosis of mental retardation (Ethan’s IQ is higher than the cut off) PLUS defects in Adaptive Functioning (which he does have).  Ethan could have travelled the NYC subway at age of 3 because he had the system memorized. But, he still cannot tie a shoelace, his visual-spacial processing is impaired so like a stroke patient he can’t draw what he sees, he is also incapable living independently without ample supports. He has lots of issues with sensory processing. He jumps and skips to literally let off energetic steam. Look at an amazing book called WHY I JUMP.

Its this great disparity, the sweeping vistas of ability and disability that are consistent with autism and also with traumatic brain injury. Looping back to the question about when we learned that the anoxic head injury might be the cause, it was at the Brroklyn DDSo, sitting with their Psychologist who was hired to deny folks services. His name was Bernie or Lenny or some slightly cute diminutive.  I sat and completed a behavioral and adaptive functioning questionnaire with the man. His questions were designed to trip me up and to prove that we were faking the level of need. However, as the HOURS went on and I specifically answered each question yes, Ethan can do this part of laundry but no, he cannot always remember to check if something is in need of laundering. He doesn’t sometimes see stains on clothes. He will wear the same sweater for 2 weeks unless reminded to change it. The endless, sad, humiliating questions over and over and I was clear that some parts were totally independent and others not at all.  The Psychologist went from taking an adversarial stance with me to getting down deep into the subtleties and teasing apart where skills were present or absent.  Like a stroke patient, Ethan has one side that is much stronger than the other and he struggles with anything that requires two-handed coordination. These are clues that there has been a head injury. The Psychologist pieced the puzzle together. Ethan was pacing outside the room, entering from time to time and doing the anxious, autistic obsessive compulsive dance that was in sharp contrast to his self-contained demeanor of his interview with the Psychologist. The guy saw the peeks and valleys during the course of our day with him. He is the one to told me that it may be traumatic brain injury that masks as autism. After a 5 hour interview, I left this ugly institution with information I hadn’t had. And had an experience of an adversarial process transforming into a mutual treasure hunt. I left with a gift. I was supposed to leave empty-handed with the State determining that Ethan did not qualify for services but I left with the services.

But there is more. When I was 3 to 4 months pregnant I was doing a stupid thing standing on a chair to put something away and I fell. That fall also could have caused the TBI. Ethan does not know this story. But after the fall, not a bad fall at all and in no way was my belly impacted (it didn’t feel so at the time) because I fell on my side into a wall. But that fall sent me to the hospital for monitoring. While there they did a sonogram (they weren’t done as regularly as they are done now). The sonogram found bi0lateral chord plexys cists on Ethan’s brain. They think 50% of the time gestating humans have these cysts during brain development. We talked to someone at NIH who told us to have an abortion. We had to see a fetal brain specialist who told us the cysts would resolve (and they did) and we would have a healthy baby.We had to see a geneticist for counseling just in case the amnio centesis came back with some bad news.

A generation ago, women drank, smoked cigarettes, didn’t consider diet an important part of pregnancy. These days we know so much more. It is impossible to say what caused Ethan’s issues: Was it the pesticides they sprayed on the trees when I was a kid? Was it the drugs I did as a young adult? Was it the light fall? Was it the fact that Ethan was 2 weeks late and the umbilical cord was being compressed during labor due to low amniotic fluid? Was it the Doctor’s faulty for not ding a C section? Was it my familial history of schizophrenia over generations taking a slightly different genetic turn with Ethan (100 years ago autism was called childhood schizophrenia). The CAUSE issue is disturbing. I never want to know.

Ethan has always been Ethan. Even at 3 months we were looking at his little fetal brain and there was something different. He  has always been Ethan. There was no vaccine shift. He doesn’t care or want to be anyone but who he is.

The DIAGNOSIS for the parent is the process of unpacking all the guilt and worry and blame. It is essential to getting help but it is a meaningless activity ultimately because it doesn’t change who is before you.

Ethan stands before me as a man whose capacity to love and capacity for joy exceeds both his parents abilities in that area. Like the image of Henry saving the group, Ethan carries his entire family on his shoulders with his ability to love. He used to carry his Superman doll around all the time. He carries us. He loves unconditionally which is something I have never been able to do.

-Maria

I just remembered the psychologists name was Howie. And, if there is a scene about diagnosis from the parent’s perspective it is a scene about a confrontation or encounter with the “universal other” who resides within and without. The scene is an interior scene, a hunt for clues to what happened that winds up at the dead body which is ME. It’s also a scene with talking hands and lists of words and paper and tests

http://www.nytimes.com/2015/02/02/opinion/our-curse.html

http://www.nytimes.com/2014/11/06/nyregion/therapist-and-patient-share-a-theater-of-hurt.html?module=Search&mabReward=relbias%3Aw%2C%7B%221%22%3A%22RI%3A11%22%7D&_r=2

Also, can everyone bring in a suggested scene that you want to see played out by another team. I for example, would like to see a scene in which Craig dresses Delia in the clothes and hair she longs to wear, pretty feminine and put together while this song plays over the scene. Its called A Heart Needs A Home:

A Heart Needs A Home

Thank you for a wonderful day. I am exhausted and deeply moved.

-Maria

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