I don't like this place.
I know I keep saying that, but I don't. I am forced here by the death of the Other Place, and I have to get used to it. But I don't trust it and it doesn't feel safe and normal.
But I'm going to try.
I'm in Indianapolis, at an academic event for my master's degree. I've been gone nearly five days and I'm tired. I know I'm supposed to say I miss my kids, and I do - a little. I see them on skype and I am happy to see them. Then I see the chaos that Jon is dealing with and I'm grateful to hang up.
Chelsea went into daycare full time for four days because of my trip. She did great until today. Today she had a terrible day. Here I am, in Indianapolis, and I get an email from her preschool. Because they can't reach Jon and Chelsea's in trouble. I get so anxious myself and want to know everything: What happened? What is she doing? How bad is it? Did something set her off? Singing, some loud noise? Is she settling down? What's the story here?
Thankfully, Jon picked her up and was able to bring her home in about 30 minutes. I asked to skype with her and I tried to talk to her. She only said that she was "sad" and "missed her daddy". Unfortunately, we can't know if these are true responses or scripted ones.
I wrote my "last" entry in the Other Place, and in that entry, I decided to really put to bed all of my business, old and new. I didn't just want to say goodbye. I wanted to put that chapter to bed. So I did.
One of the hurtful chapters occurred not long after my daughter was born. A group of total assholes attacked me, in part because my words were just too honest and raw, and in part because they really, really stupid. A few of them are so stuck on their children, it's a joke. They eat, sleep, and breathe their kids. You know I can't relate to that, and the fact that I can't is considered some sort of a flaw.
Anyway, over the years, from time to time, I have reflected on that situation. As my daughter has grown and we have learned more about her, I have realized that some (not all) of my feelings were absolutely warranted.
Chelsea was born autistic. We didn't know it then. I'm not getting into a garbage argument about the MMR vaccine or any other vaccine. You do want you want, but I know what I know for my daughter. No, it wasn't a vaccine or anything like that. She was born with it.
Today, I watched a wonderful video that examines early behaviors of children suspected of ASD, versus neurotypical children. After I watched it, I cried. I cried sitting at a table, on a lunch break at my academic event. It's ten minutes, but you can watch it here:
Why did I cry?
I cried because I saw Chelsea in this video. No, not every behavior, but so many of them. Things I know now that I didn't know then.
Why was she such a "stiff" baby? (She had a gross motor delay. This is why she didn't 'melt' into me when I held her as a small infant, like the books said she would)
Why was she so irritable? (She was autistic. She didn't know how to make social connections)
Why did she get so upset with eating, and why does she struggle to eat appropriately today? (She had sensory issues related to her autism; food was a challenge to her)
Why didn't she become mobile when other children did? Why was I stuck propping a 9 month old baby up? (She had a significant gross motor delay and motor planning issues)
Why didn't I enjoy her more as she grew? (She didn't have appropriate play skills. She didn't understand how to engage with us socially. She was, at least partially, in her own world.)
Why didn't she start babbling, talking, speaking? Why did we have to wait until she was more than 2 years old to hear sounds? (She had a significant speech delay and didn't understand what speech was for)
It was a perfect storm. I was struggling with an identity as a mother, and Chelsea was not a typical infant.
I was robbed of the chance to morph gracefully into motherhood because Chelsea was probably one of the toughest children to parent. I didn't know that. I thought all children were like this.
I don't blame Chelsea for that; I never would, it is not her fault. When I say "robbed", I do not mean SHE robbed me. I mean...the world. Fate. God. Whoever. It was robbed from me, but not by her. All Chelsea did was get born, because we willed her into existence with technology.
There are moments when I am very, very sad. There are moments when I realize what I have missed out on and what I will never know. These moments are transient, as it is difficult to consider these thoughts when you are knee deep in therapy, and IEPs and worrying about kindergarten and hearing about Chelsea's meltdown at preschool. How can I think about what I didn't get to experience?
But in quiet moments, every once in a while, I remember that my experience as a mother is not a typical one and I will never have the chance to have a typical experience. It just won't happen.
Something funny: Sometimes I think if I magically (and it WOULD be magic) got pregnant and delivered a healthy, typical child...sometimes I worry that it would make me love Chelsea less because I would have a direct comparison as a sibling to her. Right now, it is her and her atypical brother.
It is also a blessing though. It is a blessing to be somewhat detached, as I am. Jon struggles in this area and doesn't understand how I do it. He hears me on the phone, arguing with people for services for her, listing her struggles, fighting for a good IEP...and all he can do is look at her and love her and pat her on the head. I have a wonderful duality about me. I can speak dispassionately about my daughter and her needs. But when it's over, I can tickle her and play the Ipad with her.
And no one sees me...when she's off playing with "whatever", and I am standing in the kitchen or wherever I am...she is rarely out of my sight. I am watching her. I am thinking about what she needs, what we need to do, when the IEP meeting is and what arguments I am going to use to force them to comply with the law.
The other week, I asked Jon, "Which child do you think I worry about more?"
He paused. Then, "I'm not sure," he answered. "I mean, I guess both of them, right?"
I said, "Of course I worry about them both. I want them to have great lives. I want them both to be successful. But which one do you think I worry about MORE?"
He thought some more and then said, "Maybe Joshua? Because he had a rough start in life and there's still so much work left to do to figure him out?"
I shook my head. "Nope."
"Chelsea?" he replied, with a hint of surprise.
Yup. Chelsea. She is the one I worry about the most, because she is brilliant (she IS) but socially lost. I can help Joshua realize his potential. He's adorable with an infectious smile and he tries so hard to learn. Once he is better able to communicate, he will be okay. We will have other post-adoption issues with him but it's not like Chelsea.
Chelsea may never be who she is designed to be because her anxiety, her compulsions, her insistence on routine...these things will hinder her natural ability. I see it all of the time. I listen to her counting backwards from 50. But when asked to do it in a school setting, she begins to cry and says she doesn't know. Of course, she DOES know. Medication for her anxiety has helped some, but not enough.
Yes, I worry about my daughter more. My impossible, neuro-atypical daughter. She was an impossible child and I know why now. I know why my experience was so hard. I shouldn't have been in tears when she was 2 months old. She shouldn't have needed to sleep in a car seat in her crib until she was over six months old. There is so much that should have been different, and it wasn't, and I know why. I can't change why that all happened.
I cut myself some slack. Not all slack; hell, I could have made a more graceful transition. I could have been more mentally prepared. I wasn't. I accept that. But I forgive myself in some ways for my feelings and actions and acknowledge that they were valid and there were underlying reasons for their validity.
I think that truly puts it to bed for me.
Loading comments...