World Autism Day or as I Know it: Day

All God’s children are their own special brand of pain in the ass. And don’t be smug those of you with “great kids” because sometimes their flaws are latent and festering. You won’t know that your kid is a serial killer until they are well into their 30’s. Sometimes you can’t see this shit until it’s way too late. So I guess I should thank God for small favors because I knew that kids were a total sucker’s bet even before I gave birth.
Let’s just review my situation. I became pregnant while living THE life. I was living in an artists colony (I had been planning on moving into the recording studio in Milo where regionally famous bands like Paisley Reign had recorded albums) when I found out I was having twins. Sure, it’s a cheap way to get two kids for the price of one but I didn’t know how to change one diaper let alone having the willingness to do it twice in the same day! This situation was going to seriously cramp my style. Having twins puts a lot of stress on the ole cervix, too. I was 135 lbs at the time and my cervix had already had a few slices taken out of it thanks to a bout of genital warts. (sexy, no?) So 5 months into my pregnancy I had to have a cervical cerclage which is a fun little procedure where the opening in the cervix is cinched shut like a hefty bag. This also left me in the position of fearing going into labor lest my cervix dilate and rip out of the stitch closing it shut.
fun times
I ended up not having to worry much about those fetuses puncturing my cinched cervix. Thankfully, my twins stayed in a cute little T position where one twin stood right on my cervix and the other twin napped riiiiight under my bladder. Those little bitches (sorry, I mean female fetuses) didn’t move and at week 38, we scheduled a c-section. My legs were stumps and I was horrified to weigh almost 200 lbs. (BTW, 200 is my fucking goal weight now). After tons of drugs and very little effort on my part, the girls were extracted in spectacular fashion and I was absolutely amazed. They were perfect.
I can not overestimate the day I had my kids. (even the boy three years later). I really marveled at their beauty. I was totally in love with these gasbags and frankly I was stunned. I had spent the better part of the past 9 months reading about babies because up until I saw the pink plus sign on the pregnancy test, I had less than zero interest in being a good mother. I pretty much assumed that I was destined to live at Larry’s Bar being weird and poor for the rest of my life. Things turned out differently, sometimes drinking too much has unintended consequences…who knew?
I paid a lot of attention to those baby books. Human development is really fairly predictable. I had one baby who was obviously reading them as well because that little tiny girl did everything, on every page, just on time. The other kid—not so much. And it wasn’t just that baby a, who we ended up naming Kathleen, was slower, she also looked different. She had eyes that clicked back and forth and a really round head and the whitest hair. Also, this is no joke, she scared me.
It’s been 22 years since I’ve admitted this but I remember telling my buddy Cary that when Kathleen was crying one night I was scared to pick her up. I was afraid that she was going to hurt me. How can a 9 month old hurt a grown up lady? I have no idea. I know it sounds nuts but there is research to back up that the cries in some children illicit fear instead of normal nurturing feeling. Now, it was a fleeting feeling and I was able to bond with her and I loved her just as much. But the fear, no matter how fleeting, it was there. Something was really different with that kid. She definitely needed some sort of examination.
A trip to the pediatrician to have the clicking eyes checked out was kinda unbelievable. We went to “the” twin doctor…THE man. When we expressed concern over her eyes, he dismissed us. My ex husband actually blocked him from leaving the exam room and said “examine my baby’s eyes please,” An extremely rare time where I appreciated his assholeness. He declared that she was fine but was oh so gracious enough to refer her to a pediatric ophthalmologists. And it was that day—that very day that I decided that I never, ever wanted to live in a small town. Because I lived in a major metropolitan area I was able to travel less than 5 miles to a dedicated children’s hospital with every type of specialists a baby could need.
Kathleen was diagnosed with Ocular Albinism. It’s a congenial genetic disorder that affects pigment. My father had it and was legally blind. He also had another vision disorder due to his premature birth but he was intellectually fine but I was very upset to think that my daughter would never be able to drive, just like my dad. Because all of my baby books talked about development and I knew that a vision disorder could stunt her development, she was enrolled in infant stimulation courses from age 3 months. Kathleen started school at age 3 months and didn’t quit until age 22.
Back in the dark ages of the mid 1990’s, autism wasn’t diagnosed until a child was 4….(maybe it was 3 whatever criteria the DSM 4 used). Nowadays, kids receive services for autism at 18 months. It blows my mind but whatever, weirdos. But I guess I can understand because we suspected autism at about 2 1/2. When her sister MA was playing with human looking toys, Kathleen would play with q-tips. When MA would politely request apple juice, Kathleen would grab our hands and lead us to the refrigerator. She didn’t speak and wouldn’t for a few years and even then almost exclusively in a receptive or “labeling” manner. The signs were there. With no more knowledge of autism than having watched Rain Man, we knew the problem. At age 6 months, Kathleen began going away to school with her sister who served as a peer model. We brought up an autism diagnosis to the teachers at this specialized infant/toddler school and were told not to worry. At the end of her third year, the vision teacher pulled me aside and told me that they had seen signs too but knew that there was “nothing we could do” about autism.
In 1996 we didn’t have the internet but we still had common sense and a library. I had heard about treatments for autism and believed that time was of the essence. I was infuriated that the teachers didn’t seem to know that there was early intervention for autism and discouraged by the idea that I couldn’t afford the cost of running a home program. I was a annoyed with the autism community who resented that their children were often lumped in with “retarded” kids. (Autism is technically a developmental delay.) When Kathleen was eventually diagnosed, she was dually diagnosed with autism and intellectual disability.
I felt like an outsider even amongst the outsiders.
My days with the twins before age 4 was filled with school and researching child development. I stayed home with them for a full year until I was diagnosed with postpartum depression and prescribed Prozac. This drug would change my life in many, many ways. Turning me from a sullen, angry deeply unhappy person to a very aggressive mommy-vixen. These few years were, well, odd. Going from living underground in special needs world in my own little foggy bubble to coming out into the regular world was very hard.
When I finally went to work, in retail, I was forced to talk with humans. Now, I should have just lied about my life. I should have said that I was single and had two cats and liked long walks and white wine spritzers. Instead I told people I had twins.
Do they have a twin language? Do they look out for each other? Do they get into trouble together? Do you think they’ll be friends forever? And on and on and on and on and on.
Nope…none of those things. My twins can’t communicate, I’m afraid that Kathleen is more likely to pull MA’s hair than anything else, they aren’t close and even though I try to force a relationship…its not working. And have a niccceeee day!”
I went to work at home too as the one woman development director for a home therapy program for Kathleen. I repurposed respite provider funds to train and pay for “therapists”. I found a newly licenses psychologists who was wiling to work with me and lots of students who worked with Kathleen for course credit. I had a fire in my belly and Prozac coursing through my brain and I was going to ensure that my daughter finished school, went to college, got a job and would never be dependent on anyone. I ran a home program from 1997-2003’ish. What good did it do her? I’ll never know. She never got out of special education and into the regular classes like I kept hearing that kids doing this therapy were. And although she lives in an apartment, she will need assistance for the rest of her life.
When people ask about my kids now, I just say “they’re fine”. It makes my conversations much shorter and has the added benefit of being mostly true.
It was a weird infant hood and weird toddlerhood and even a weirder childhood, from my perspective anyway. I am only glad that I never dreamed about motherhood because my dreams would have been crushed. No one dreams of having a motherhood like I had. It was hard to relate to other moms, my own family and my own kids. I never got over it but I did get used to it.
It was a very long journey from thinking something wrong to the day I moved Kathleen into her own apartment. It was filled with lots of people. People who helped me tremendously and at least three total assholes. I let many many compassionate strangers into my home. They saw me cry, saw me drunk, saw me happy and saw me divorce and then fall in love again. Most importantly, they helped me raise my family.
The story of your kids is never over, even when you’re dead you don’t get to be done. But living without your kids and letting them loose is a game changer. I witnessed so many strangers in my home interacting with my family that I was probably a little more confident of the world I was turning them over to. Maybe in that regard I’m much luckier than most parents. Maybe the therapy was never really for Kathleen but for me.

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