(no subject)
I'm not sure if anyone still reads this, but hi, everyone if you're reading! I'm posting a kind of general life update.
My book got rejected. It was hard, but not unexpected at this stage in the game. I'm plugging away, but much slower than I was before.
Now for the nitty-gritty stuff and I think most of you know what that is.
In early September of last year, I found I was pregnant. A few days later, Thor got his official diagnosis of being on the autism spectrum. Lots of navel gazing word vomit ahead.
Now neither of these were entirely a shock. We had been trying to get pregnant for a while. We had been trying to figure out what was up with Thor for a while. But dealing with those two things back to back has made this last year or so a wild ride.
Most of the year has been fine, happy even. We started a journey (I know it's a cliche, but it's apt) and we kept trying to move forward on this new detour we had taken. Thor had in home therapy until he turned 3 in January and then he went to school. Full day school as in 8 hours a week, 5 days a week. Just like the big kids. We saw a bit of progress. Even this summer, without school, we have still seen some progress. So if it isn't that big a deal, why don't I talk about it more? Why am I just talking about it now?
Well, I do talk about it quite a bit in person where I can control the flow of the conversation. Some people are very chill and accepting. Some people get nervous and awkward, which I understand. And then there are the people that are so, so sad for you. No lie, my obstetrician started crying when I told her. What do you say to your doctor when THEY start crying? What do you do when your mother starts sobbing uncontrollably over the phone, clearly grieving over something you are still grappling to understand?
So I'm trying to learn when to hold it back and when to let it go. Lots of times, I try to stick with "he's just shy" or say nothing if it is a casual social interaction. I strive to never use it to excuse his behavior (hitting when people touch him/invade his personal space), but I do tell sometimes. Because whether it's true or not, I feel like when we are out together there is a blinking neon sign over our heads saying "special needs family."
Let me clear, Thor doesn't flap his hands. He doesn't bang his head against walls. He doesn't do any of the stereotypical things I thought autism was before it entered my life. But he rarely speaks even to us and his vocabulary is roughly 8 words. He might not make eye contact with you, but even if he does, he definitely won't wave. At three and a half, he is just now waving "bye bye" and even that is very rare. If you spend any time around kids at all and then you spend some time around Thor, you will realize that there is something going on. Maybe you wouldn't think it was autism. Maybe you would think my kid is just a brat or weird or I'm a bad parent.
And I don't care about that (really, I don't), but I don't want my low-key attitude to be mistaken for obliviousness to reality. Sometimes I tell others about Thor's autism b/c I worry the other person is thinking "That poor woman. Her son is autistic and she doesn't even know it." I want to come off as the informed, on-top-of things parent. "Yup, my son's autistic. Everything's under control. Nothing to see here. Nothing to pity. Move along."
I hope someday that will matter to me less.
Also sometimes I feel like if I just say the word autistic, over and over again in public, if I own it, it will cease to be a big deal. Maybe to me and maybe the world.
So why didn't I talk about it on Facebook, etc.? Well, autism is one of the hot button issues of the day. Everyone and their great Aunt Gertrude has an opinion and wants to stick their oar in. I realize people genuinely want to help, but I'm still formulating my own opinions, thank you, and I'm struggling to learn about the diverse autism community as an outsider (as a neurotypical aka "normal" person).
So why here and now? Well, like I said our "journey" (ugh, I know) was going fine and I hit a road block. I had always had forward momentum, taking it one day at a time and focusing on the positive, but in May I started to struggle with big bouts of depression, doubt, anger and fear. Why us? What if this? What if that? What if Thor never does [whatever I was worrying about that day]? I'm sure it was some combination of getting to the end of Thor's school year, seeing what we had and hadn't accomplished, and those lovely third trimester pregnancy hormones. But it was rough.
Then the summer started with a lot of ups and downs. Actually, the whole summer had tons of ups and downs, but I did something in the middle of the summer that made a difference. I read Susan Senator's "Making Peace with Autism."
I had tried to read about autism from the parents' perspective before and had struggled, frankly. Everything was either too scary, or too depressing, or just too big to wrap my mind around. The spectrum is a large, variegated place. Some people were worried about their teenagers never going on a date or finding a partner, other parents were simply trying to get their kids to stop banging their heads against the floor or ripping their own hair out (short answer: you buy a helmet and get on with life). I would read something and think is Thor "better" or "worse" than this person? Can I live up to the single-minded dedication that this parent has? Should I?
Susan Senator's book was the first memoir I read that was by a mother raising someone who would be considered low-functioning by many, but to Susan he is just her son. He lives in a group home with some supervision. He does work at a grocery store that most people would consider menial. He is not "mainstream." He is not an "autism success story", but he is happy. He is loved. His life has value.
Now, we all believe that, right? That every person's life has value? I certainly believed it on an abstract, intellectual level, but it was different when I had to examine that belief in my day to day life. I believed certain outcomes for Thor would be "bad" and other outcomes would be "good." But if everyone's life has value, there shouldn't be any such thing as a bad outcome so long as Thor is reasonably happy and healthy. Right? Susan's book was the one that helped me get that on an emotional level. This may not be the right book for everyone, but it was the right book at the right time for me.
I'm not saying it made everything fine right away, but I do feel like almost overnight I leveled up in my acceptance of Thor's autism. I was ready to read more about autism, learn more about autism, and I was ready to think about Thor's future whatever it might be. Most importantly I wanted to talk and write about autism. I started to feel the urge to write fill up and flow out of me like an over brimming cup of words.
So that's why here. That's why now.
And that's what's new with me.
My book got rejected. It was hard, but not unexpected at this stage in the game. I'm plugging away, but much slower than I was before.
Now for the nitty-gritty stuff and I think most of you know what that is.
In early September of last year, I found I was pregnant. A few days later, Thor got his official diagnosis of being on the autism spectrum. Lots of navel gazing word vomit ahead.
Now neither of these were entirely a shock. We had been trying to get pregnant for a while. We had been trying to figure out what was up with Thor for a while. But dealing with those two things back to back has made this last year or so a wild ride.
Most of the year has been fine, happy even. We started a journey (I know it's a cliche, but it's apt) and we kept trying to move forward on this new detour we had taken. Thor had in home therapy until he turned 3 in January and then he went to school. Full day school as in 8 hours a week, 5 days a week. Just like the big kids. We saw a bit of progress. Even this summer, without school, we have still seen some progress. So if it isn't that big a deal, why don't I talk about it more? Why am I just talking about it now?
Well, I do talk about it quite a bit in person where I can control the flow of the conversation. Some people are very chill and accepting. Some people get nervous and awkward, which I understand. And then there are the people that are so, so sad for you. No lie, my obstetrician started crying when I told her. What do you say to your doctor when THEY start crying? What do you do when your mother starts sobbing uncontrollably over the phone, clearly grieving over something you are still grappling to understand?
So I'm trying to learn when to hold it back and when to let it go. Lots of times, I try to stick with "he's just shy" or say nothing if it is a casual social interaction. I strive to never use it to excuse his behavior (hitting when people touch him/invade his personal space), but I do tell sometimes. Because whether it's true or not, I feel like when we are out together there is a blinking neon sign over our heads saying "special needs family."
Let me clear, Thor doesn't flap his hands. He doesn't bang his head against walls. He doesn't do any of the stereotypical things I thought autism was before it entered my life. But he rarely speaks even to us and his vocabulary is roughly 8 words. He might not make eye contact with you, but even if he does, he definitely won't wave. At three and a half, he is just now waving "bye bye" and even that is very rare. If you spend any time around kids at all and then you spend some time around Thor, you will realize that there is something going on. Maybe you wouldn't think it was autism. Maybe you would think my kid is just a brat or weird or I'm a bad parent.
And I don't care about that (really, I don't), but I don't want my low-key attitude to be mistaken for obliviousness to reality. Sometimes I tell others about Thor's autism b/c I worry the other person is thinking "That poor woman. Her son is autistic and she doesn't even know it." I want to come off as the informed, on-top-of things parent. "Yup, my son's autistic. Everything's under control. Nothing to see here. Nothing to pity. Move along."
I hope someday that will matter to me less.
Also sometimes I feel like if I just say the word autistic, over and over again in public, if I own it, it will cease to be a big deal. Maybe to me and maybe the world.
So why didn't I talk about it on Facebook, etc.? Well, autism is one of the hot button issues of the day. Everyone and their great Aunt Gertrude has an opinion and wants to stick their oar in. I realize people genuinely want to help, but I'm still formulating my own opinions, thank you, and I'm struggling to learn about the diverse autism community as an outsider (as a neurotypical aka "normal" person).
So why here and now? Well, like I said our "journey" (ugh, I know) was going fine and I hit a road block. I had always had forward momentum, taking it one day at a time and focusing on the positive, but in May I started to struggle with big bouts of depression, doubt, anger and fear. Why us? What if this? What if that? What if Thor never does [whatever I was worrying about that day]? I'm sure it was some combination of getting to the end of Thor's school year, seeing what we had and hadn't accomplished, and those lovely third trimester pregnancy hormones. But it was rough.
Then the summer started with a lot of ups and downs. Actually, the whole summer had tons of ups and downs, but I did something in the middle of the summer that made a difference. I read Susan Senator's "Making Peace with Autism."
I had tried to read about autism from the parents' perspective before and had struggled, frankly. Everything was either too scary, or too depressing, or just too big to wrap my mind around. The spectrum is a large, variegated place. Some people were worried about their teenagers never going on a date or finding a partner, other parents were simply trying to get their kids to stop banging their heads against the floor or ripping their own hair out (short answer: you buy a helmet and get on with life). I would read something and think is Thor "better" or "worse" than this person? Can I live up to the single-minded dedication that this parent has? Should I?
Susan Senator's book was the first memoir I read that was by a mother raising someone who would be considered low-functioning by many, but to Susan he is just her son. He lives in a group home with some supervision. He does work at a grocery store that most people would consider menial. He is not "mainstream." He is not an "autism success story", but he is happy. He is loved. His life has value.
Now, we all believe that, right? That every person's life has value? I certainly believed it on an abstract, intellectual level, but it was different when I had to examine that belief in my day to day life. I believed certain outcomes for Thor would be "bad" and other outcomes would be "good." But if everyone's life has value, there shouldn't be any such thing as a bad outcome so long as Thor is reasonably happy and healthy. Right? Susan's book was the one that helped me get that on an emotional level. This may not be the right book for everyone, but it was the right book at the right time for me.
I'm not saying it made everything fine right away, but I do feel like almost overnight I leveled up in my acceptance of Thor's autism. I was ready to read more about autism, learn more about autism, and I was ready to think about Thor's future whatever it might be. Most importantly I wanted to talk and write about autism. I started to feel the urge to write fill up and flow out of me like an over brimming cup of words.
So that's why here. That's why now.
And that's what's new with me.