But I’m back, and I need this space. And I need the friendships I once built here, even though I think many of ‘my people’ have moved on from the blogosphere. And so, maybe there will be new people who I will find and who will find me?
I need this space because, just as was the case 5 or 6 years ago, I have a HUGETHING that is taking up immense space in my life and my brain and it’s a thing that I don’t feel comfortable sharing with just anyone which is especially hard because it’s also a thing I NEED to share with people because I need to figure this out, and I need to hear about other people’s experiences as well.
When I started this blog, the thing was trying to get pregnant. We got pregnant, twice, and this blog was instrumental in having a place to store my obsessive worry, the numbers no one (except the other people going through it) cares about, the minutae of personal crisis. And it worked, I got through it, I made friends. All of us have children now.
So, I’m back.
And here’s why:
I have been worried about Ansel for a little while. I chalked a lot of it up to my personality and, for a while, first time parenthood. But at 2.5, I felt like he should have been talking more, that he should have been easier to understand. So I took him to get testing through early intervention. He ranked low on verbal skills, but high enough to miss the cut off for services. They mentioned, too, that he seemed to have some proprioception differences. “Come back before he turns 3 if you’re still worried.”
He was hard to understand, and he just kept throwing up, gagging, eating fewer and fewer foods. We asked the pediatrician. “He’s a normal weight. Just picky. Keep exposing him to foods. He’s fine.” Then we were worried about how much he ran into things, how often he got hurt, “He’s ok, just clumsy.” We kept asking and people kept telling us he was fine.
He seemed anxious sometimes. He picked at his cuticles and sometimes his lips obsessively, distractedly. He had to be the first one in the living room every morning. He collected sticks, had to find one every day on the way into school. He couldn’t leave the house without something in his hands. He couldn’t – or wouldn’t – dress himself. He went limp when we tried to help him and more mornings than not, one or both of us was sweating before we got out to the car. I fondly refer to him as ‘my little weirdo’ and it is with deep deep love and appreciation for his weirdness but also, if I’m honest, some worry.
We asked about all of this. He’s fine, everyone said. He’s fine.
But things didn’t feel fine, and so finally I called Child Find (the school based, federally funded program available in all public schools) and asked for another evaluation. In January, we took him to the initial evaluation and got some basic results: normal cognitive function, solid gross motor skills, good language comprehension, but evidence of delays in fine motor and articulation and sensory processing. We went back for more evaluation in February and this time the folks we saw recommended we also get him evaluated by a doctor or psychologist. The waiting lists for those evaluations through insurance was 12-18 months, so we handed over our credit card and paid out of pocket because now that someone was taking us seriously, we needed things to keep moving.
The child find evaluation showed him to have substantial deficits in fine motor skills, he ranked just above the 5th percentile in speech understandability (kids his age are usually at 100% intelligibility, he’s at about 60%) and the rater noticed he had “significant sensory differences.” He qualified for developmental preschool and we got him enrolled immediately.
Finally, the expensive but very kind and very highly regarded child psychologist gave us her assessment: autism spectrum disorder. High functioning, no cognitive or intellectual impairments. With support, she thinks he will do very well.
And though nothing about my joyful, funny, weird, wonderful child changed from the morning before that diagnosis to the afternoon I heard the words, I felt like the entire world tipped on a different axis. On one hand, that huge, somewhat scary word means we will have access to things that can help him in a way we didn’t before. On the other, that word carries stigma and can be interpreted in a lot of ways. Which is why I am trying to be thoughtful about who I share with.
I am struggling now with a sense of disagreement with the diagnosis, while I’m also beginning to see things I didn’t see before. And I don’t know if that disagreement is my mama gut sense of truth, or if it is resistance born of grief and my own emotional baggage. I know that he struggles to connect with peers but also that he craves friendship and is so kind and so extroverted and so loving; I know that his meltdowns are not like the tantrums I’ve witnessed in other children – they feel much more out of control in a scary way, in a horribly sad way, in a very specific way.
Even as I feel deeply grief stricken and terrified with the ways the future may have just shifted, I also feel like we are in the absolute best place for this to have happened.
Our closest Washington friends are a lovely family we met through co-op preschool. They have two daughters, one Ansel’s age, the other just finishing 1st grade. The dad is a special education teacher, the mom is an ABA therapist working on her BCBA certification. If you don’t know what all of that means, the basic is this: ABA therapy is the best ‘treatment’ available for ASD. And now some of our very best friends are going to be on Ansel’s ABA team. People he already knows and loves.
I have been managing a lot of my feelings by reading and researching, which has always been my most beloved strategy. And through it, I have started to understand the ways in which this difference makes Ansel’s brain so beautiful and unique. I was already in the camp of understanding autism as a difference vs. a disability, but I have a greater understanding of what ASD really means and that has allowed me to see the ways in which he is able to see and do things I cannot.
There is a lot to think about and process here. Plus, of course, the many other facets of life: my ongoing struggles with my mom, the realities of parenting and being married and managing all of that, continuing to become rooted in a place that still feels very new.
So, I think I need to be back. And, I’m going to be honest that it took me two weeks from start to finish on this post. So, we shall see. But, if you’re still out there – I’m back, and I need you.