I thought I'd make good use of being up with Janey in the middle of the night to update a bit here! I can't sleep lately either, so I don't really mind her being awake as much as I sometimes can.
How are things going, you might ask? Quite well, really. And I am knocking on wood all over the place saying that.
Janey started high school earlier this month. I was VERY nervous about it. She hadn't gone to a new school for many years, and the high school we picked is far away from our house. But it had the program we wanted, as I've written about. And so far, so good! The bus has been more reliable than it usually is, despite having to navigate all kinds of complicated Boston traffic and roads to get her to and from school. We are getting good reports from her teacher, who although I haven't met him in person yet seems great. We get a page each day, partly self-reported with stamps by Janey, telling us what activities she had, whether she ate much lunch or not, and whether it was a great day, a good day or a not so good day. There's only been a couple not so good days! Her teacher (sort of like her home room teacher, as she has several teachers and they rotate around the 4 or 5 connected rooms that are for her program of 40 kids) writes a little note every day and is great at being touch by email, and that makes me so happy. I love knowing a bit about how Janey is doing each day.
She even has electives! She didn't elect them, but they were well chosen. She has dance almost every day, which is just a dream come true. I've always wanted Janey to get more of a chance to dance. She has Very Special Arts most days, which is music and art for special needs kids, and she swims several times a week. Every Friday, there is some kind of outing. We send in a little money for it. She has gone to the corner store a few times, and this Friday to the Dollar Tree! I love the idea of her getting out and about.
Janey has seemed happy at home most of the time since starting school, also. Her main activity lately is what you might call close watching of two movies---"Coco" and "The Emperor's New Groove". She watches them both at least once a day, and seems to have memorized them. She remembers right where she left off if interrupted, and recites the scene she is about to see when she goes back to watch. As with so many of the things Janey likes, we agree with her taste. Coco is a fantastic movie, all about music and (this struck me the other day) the power of music to reach those who might not talk much, in this case the title character of the movie, Coco, who is the main character's great-grandmother, who has dementia. The Emperor's New Groove is just plain funny, and Janey seems to appreciate the humor a lot. As she got ready to watch it just now, she recited the beginning "I was the nicest guy on earth and they ruined my life for no reason!" After school earlier, she spent about an hour with nothing on, no TV or music, happily reciting lines from the movies and singing song clips. I love listening to her do that. I know it's echolalia, but it's not the kind of echolalia she used to do more of, frantic and unable to stop sounding. This echolalia is very varied, and seems to just be thinking aloud, a stream of consciousness recitation of what's in her head. Every now and then, there's a line I think is from school.."Can you guys please come over to the kitchen?" or things like that.
A few weeks ago, my parents visited, and I could tell at one point Janey was in the exact rare mood to show my father something he hadn't seen before, Janey's flash card abilities. I held up a big pile of picture flash cards, one after the other, and said "this is a...." and she named what was on the card. ALL of the cards. The few she got wrong were close guesses, like calling a fox a dog or a tiger a lion. There were words in there I wasn't sure she knew at all, but she did. My father was surprised and impressed.
I've been reading more about RPM (rapid prompting method) and it seems like what Janey will sometimes do with the flash cards is similar to what kids do in RPM sessions, from what I can see. I have to ask rapidly what's on the cards, I have to move right away to the next one. It almost feels like magic---the way to glimpse what is in Janey's mind that for whatever reason she can't usually tell me. But it also seems to have the limitations I've heard several people mention about RPM. It's not really a skill that carries over much into every day life, at least in terms of what Janey readily says. The words she uses for the cards are not words that are really part of her limited regular vocabulary, and I am not sure how I can make them part of it. It seems like a lot of the value of the cards is to help people understand Janey's mind, to show she knows more than it might appear. But if she wasn't in the mood for doing it, she just wouldn't, and I wouldn't be able to push her to do so, even if I were so inclined, which I'm not. I wish, as I have wished for so many years, that I better understood Janey's mind.
On a personal note, I was finally officially diagnosed this past week with Sjogren's Syndrome, an autoimmune disease that among other things causes one's eyes and ears to be extremely dry, and also causes severe fatigue. I've had the symptoms for a while, and a new rheumatologist I'm seeing gave the official name to it, although it's been tossed around as likely for years. I mention this for a few reasons. One is curiosity if anyone else out there has the autism/autoimmune disease connection, for any autoimmune diseases (I have some antibodies showing I might another more serious autoimmune condition or might get it at some point, but thankfully not now, but they all tie together quite a bit). The other reason is just, well, sort of to talk about how a child's autism interacts with a parent's own health issues. My tiredness, which at times have made it so hard staying awake when Janey needed me awake that it's part of why Tony retired as soon as he was able to, has along the years made this journey with Janey a bit tougher. There isn't a cure for Sjogren's, but I am glad to have a reason and an explanation for some of my issues. And I hope if any of you have symptoms you might be inclined to dismiss as just being part of the stress and tiredness that comes along with special needs parenting, you will seek out a medical opinion and keep trying to get answers. It took me a LONG time to get really proactive about my own health.
I've rambled here, I'm sure partly because it's 1:20 in the morning and Janey is still going strong, but as always, I've enjoyed virtually talking with you, my friends, my sisters and brothers by means of our shared challenges and joys in life.
Rarer in Girls...Life with my daughter Janey, who is 21 and severely autistic
Showing posts with label Sjogren's syndrome. Show all posts
Showing posts with label Sjogren's syndrome. Show all posts
Saturday, September 28, 2019
Friday, September 29, 2017
Thinking about guilt
A few weeks ago, a tough day hit my family. I thought the toughest part was going to be going to the dentist. I had quite a toothache, which I had ignored for a while. It was in my one remaining wisdom tooth, and the dentist told me right away it had to come out. While pulling it out, the tooth next to it fell apart, so they both were extracted. I have Sjogren's Sydrome, and that does a number on teeth.
At just about the exact time my teeth were coming out, my father in Maine had a terrible fall. He was on a ladder, and it slipped. Holding onto the ladder, he was slammed to the ground. Once he was taken to the hospital, and then to a larger trauma center two hours from home, it was determined that he'd broken both heels and crushed a vertebrae. Later, it became apparent he'd also had a bad concussion. He had surgery the next day, and is still in a rehab hospital, not to come home for a few weeks. Thankfully, he's doing much better, but the recovery was tough. He's 77, and anesthesia does a number on older men, we've found out. He was in intensive care for days as they tried to get his oxygen levels regulated, and once at the rehab, he had bouts of scary confused thought. Now, to hear his voice, he sounds like his old self, but he won't be able to get around without a wheelchair for several months anyway.
The night my mother called to tell me what had happened, the night after the tooth extraction, I was in extreme pain. However, immediately, I felt I should be there. I still feel that, a bit. It wasn't possible. My pain level from the extraction was very high, for about 10 days. That's another gift from the Sjogren's Syndrome. I have almost no saliva, and that makes it very hard for a mouth to heal. I could barely get out of bed. In addition, our old, old car was in such a state that stopping even at red lights made it dangerously overheat. We were ready for a new car, but shopping for one? That was tough. It was impossible with Janey along, and I wasn't up to watching Janey on my own---Tony was coming home early from work each day to get her off the bus.
The guilt of that week---I can barely describe it. My father was in terrible shape, and I couldn't get to him. In my mind, the rest of our reality seemed unimportant. I kept thinking, over and over "What kind of daughter isn't with her father at a time like this?"
I know that from the outside, things look differently. But from the inside, guilt is a strong and often irrational emotion. Guilt doesn't take into consideration that there might be complications, conflicting responsibilities, life realities. Guilt just pounds away at you.
Gradually, as I had less pain and could think more clearly, I realized that while my father was in the hospital or rehab, he needed me far less than he would once he was home. There, I would be able to give my mother breaks, and let her get out to get groceries, and keep him company once he was away from the hubbub of the hospital. My current plan is to wait for when my parents most need the help, and then go up for about a week, during which Tony will come home early from work to get Janey from the bus. In support of that plan, Tony took a day from work and we finally got a new car, a great deal on a fairly new used car that is 12 years newer than the old car, and will hopefully get us safely anyplace we need to go.
With my clearer thinking, I've realized a few things. The biggest of them might seem a little unrelated, but it hit me hard yesterday. For many years, I've longed for respite care for Janey, and with this crisis, people mentioned a lot that we should try again to find it. But the truth is, as Janey gets older, I am going to be less and less inclined for anyone to care for her but family and the school. I trust her school completely. We had a wonderful meeting with her teachers and therapists and program directors earlier this week, and as we almost always are, we left feeling extremely grateful and happy about the level of care they give her. When she isn't in school, I want her with Tony, her brothers or me. That is what I feel good about. I think I'll write another blog entry more about this, but for now, I'll just say that it felt like a relief to realize that, to decide that.
The other realization is that hard as it might be, I need to prioritize. In other circumstances, of course I would have been by my father's side. But in our particular circumstance, Janey comes first, followed closely by my own health and that of my other family members, so we are able to continue putting Janey first. When I am able to step back and remember that, I can figure out ways to care for the other important people in my life.
I write about this at some length because I think many of the parents living the life Tony and I live are faced with situations like this often. It's not easy to realize that you can't do everything, you can't clone yourself, that sometimes you have to decide what you can and can't do. It's so good to know there are others out there living this life, making these decisions, and I hope we can all continue supporting each other with understanding and love.
At just about the exact time my teeth were coming out, my father in Maine had a terrible fall. He was on a ladder, and it slipped. Holding onto the ladder, he was slammed to the ground. Once he was taken to the hospital, and then to a larger trauma center two hours from home, it was determined that he'd broken both heels and crushed a vertebrae. Later, it became apparent he'd also had a bad concussion. He had surgery the next day, and is still in a rehab hospital, not to come home for a few weeks. Thankfully, he's doing much better, but the recovery was tough. He's 77, and anesthesia does a number on older men, we've found out. He was in intensive care for days as they tried to get his oxygen levels regulated, and once at the rehab, he had bouts of scary confused thought. Now, to hear his voice, he sounds like his old self, but he won't be able to get around without a wheelchair for several months anyway.
The night my mother called to tell me what had happened, the night after the tooth extraction, I was in extreme pain. However, immediately, I felt I should be there. I still feel that, a bit. It wasn't possible. My pain level from the extraction was very high, for about 10 days. That's another gift from the Sjogren's Syndrome. I have almost no saliva, and that makes it very hard for a mouth to heal. I could barely get out of bed. In addition, our old, old car was in such a state that stopping even at red lights made it dangerously overheat. We were ready for a new car, but shopping for one? That was tough. It was impossible with Janey along, and I wasn't up to watching Janey on my own---Tony was coming home early from work each day to get her off the bus.
The guilt of that week---I can barely describe it. My father was in terrible shape, and I couldn't get to him. In my mind, the rest of our reality seemed unimportant. I kept thinking, over and over "What kind of daughter isn't with her father at a time like this?"
I know that from the outside, things look differently. But from the inside, guilt is a strong and often irrational emotion. Guilt doesn't take into consideration that there might be complications, conflicting responsibilities, life realities. Guilt just pounds away at you.
Gradually, as I had less pain and could think more clearly, I realized that while my father was in the hospital or rehab, he needed me far less than he would once he was home. There, I would be able to give my mother breaks, and let her get out to get groceries, and keep him company once he was away from the hubbub of the hospital. My current plan is to wait for when my parents most need the help, and then go up for about a week, during which Tony will come home early from work to get Janey from the bus. In support of that plan, Tony took a day from work and we finally got a new car, a great deal on a fairly new used car that is 12 years newer than the old car, and will hopefully get us safely anyplace we need to go.
With my clearer thinking, I've realized a few things. The biggest of them might seem a little unrelated, but it hit me hard yesterday. For many years, I've longed for respite care for Janey, and with this crisis, people mentioned a lot that we should try again to find it. But the truth is, as Janey gets older, I am going to be less and less inclined for anyone to care for her but family and the school. I trust her school completely. We had a wonderful meeting with her teachers and therapists and program directors earlier this week, and as we almost always are, we left feeling extremely grateful and happy about the level of care they give her. When she isn't in school, I want her with Tony, her brothers or me. That is what I feel good about. I think I'll write another blog entry more about this, but for now, I'll just say that it felt like a relief to realize that, to decide that.
The other realization is that hard as it might be, I need to prioritize. In other circumstances, of course I would have been by my father's side. But in our particular circumstance, Janey comes first, followed closely by my own health and that of my other family members, so we are able to continue putting Janey first. When I am able to step back and remember that, I can figure out ways to care for the other important people in my life.
I write about this at some length because I think many of the parents living the life Tony and I live are faced with situations like this often. It's not easy to realize that you can't do everything, you can't clone yourself, that sometimes you have to decide what you can and can't do. It's so good to know there are others out there living this life, making these decisions, and I hope we can all continue supporting each other with understanding and love.
Monday, October 24, 2016
Trying to radically accept myself
Although I fall far short, my favorite philosophy in parenting Janey is radical acceptance. I want to accept her as who she is, not try to change her. I want to delight in her special qualities, without the special being a "special" as seen in "special needs". I want to be frustrated with her as who she is, not who society feels she should be. I want her to be herself. I read a good blog post about this today (read it here) and it got me thinking a lot. I want to radically accept Janey, but lately, I'm having a very hard time radically accepting myself.
Last summer, I spent a day being researched upon by the Framingham Heart Study. If you don't know about them, it's worth following the link to find out more. My mother's family is from Framingham, and I feel lucky to be part of the 3rd generation of my family to participate in the landmark study. It's mostly about the heart, as the title would imply, but this time, they also included a liver scan, something called a FibroScan. Usually you don't hear about your medical results from the study, except for a sheet of basic information like your cholesterol reads, but if something fairly major is detected, they let you know. About two months after my day there, I got a letter saying that the liver scan showed a high possibility of significant scarring to my liver.
That letter sent a chain of appointments and tests into action, the most recent one being a liver biopsy, the gold standard of liver tests. It gave me a diagnosis---something called NASH (non-alcoholic steatohepatitis). Basically, that means my liver is inflamed and scarred by means of something other than alcohol. It's a strange disorder. No-one knows exactly why you get it, and there is no treatment. It's just---there. Sometimes it doesn't progress further (although it in itself is a progressed stage of something called fatty liver) and sometimes it does, leading to cirrhosis, which also has no cure, except a liver transplant.
There aren't too many symptoms of NASH, but the top of the list of the ones they are is fatigue. Just by luck's draw, I have two other medical issues which also cause severe fatigue---a thyroid which works almost not at all, along with what is most likely Sjogren's Syndrome. The result is a kind of tiredness that is hard to even explain. I wake up fine, and I'm fine for about three to four hours. And then I get tired---so tired that I almost always have to take a nap. I'm okay for a few more hours after that, but then again, very very tired, tired in what I think of a bone-tired way, tired right down to the roots of me.
As I lay in bed a bit ago, worn out from a trip to the grocery store and some minor laundry, I was cursing myself. I hate the tiredness. It makes me feel like a lazy loser. I get so little done. I do what for most people would be a normal morning's chores on a light day, and I'm ready to collapse. As I lay there, reading the blog entry I linked to earlier, though, for just a second I thought "I have a reason for this tiredness. I don't have to hate myself for it. I can do what I want to do for Janey. I can radically accept myself"
It's hard for me to accept myself at all, to say nothing of radically accepting myself, but I think I'm going to need to start trying. That's partly because I can't seem to think my way out of the physical issues I have, and partly because to be the best mother I can to Janey (and to William and Freddy), I need to. If I didn't rest during the day while Janey was at school, I couldn't do much for her when she got home. My health issues are part of me. They are part of what I need to accept.
I debated whether to write about all of this here. But I write about Janey, and I want to be similarly open about myself. It seems fair, if I write honestly about raising Janey, that I write honestly about my own life.
I'll close with a picture of Tony and me, taken in front of the building where we met at work many years ago. I don't like how I look in pictures, but I'm going to try to start radically accepting myself there too. It's a work in progress.
Last summer, I spent a day being researched upon by the Framingham Heart Study. If you don't know about them, it's worth following the link to find out more. My mother's family is from Framingham, and I feel lucky to be part of the 3rd generation of my family to participate in the landmark study. It's mostly about the heart, as the title would imply, but this time, they also included a liver scan, something called a FibroScan. Usually you don't hear about your medical results from the study, except for a sheet of basic information like your cholesterol reads, but if something fairly major is detected, they let you know. About two months after my day there, I got a letter saying that the liver scan showed a high possibility of significant scarring to my liver.
That letter sent a chain of appointments and tests into action, the most recent one being a liver biopsy, the gold standard of liver tests. It gave me a diagnosis---something called NASH (non-alcoholic steatohepatitis). Basically, that means my liver is inflamed and scarred by means of something other than alcohol. It's a strange disorder. No-one knows exactly why you get it, and there is no treatment. It's just---there. Sometimes it doesn't progress further (although it in itself is a progressed stage of something called fatty liver) and sometimes it does, leading to cirrhosis, which also has no cure, except a liver transplant.
There aren't too many symptoms of NASH, but the top of the list of the ones they are is fatigue. Just by luck's draw, I have two other medical issues which also cause severe fatigue---a thyroid which works almost not at all, along with what is most likely Sjogren's Syndrome. The result is a kind of tiredness that is hard to even explain. I wake up fine, and I'm fine for about three to four hours. And then I get tired---so tired that I almost always have to take a nap. I'm okay for a few more hours after that, but then again, very very tired, tired in what I think of a bone-tired way, tired right down to the roots of me.
As I lay in bed a bit ago, worn out from a trip to the grocery store and some minor laundry, I was cursing myself. I hate the tiredness. It makes me feel like a lazy loser. I get so little done. I do what for most people would be a normal morning's chores on a light day, and I'm ready to collapse. As I lay there, reading the blog entry I linked to earlier, though, for just a second I thought "I have a reason for this tiredness. I don't have to hate myself for it. I can do what I want to do for Janey. I can radically accept myself"
It's hard for me to accept myself at all, to say nothing of radically accepting myself, but I think I'm going to need to start trying. That's partly because I can't seem to think my way out of the physical issues I have, and partly because to be the best mother I can to Janey (and to William and Freddy), I need to. If I didn't rest during the day while Janey was at school, I couldn't do much for her when she got home. My health issues are part of me. They are part of what I need to accept.
I debated whether to write about all of this here. But I write about Janey, and I want to be similarly open about myself. It seems fair, if I write honestly about raising Janey, that I write honestly about my own life.
I'll close with a picture of Tony and me, taken in front of the building where we met at work many years ago. I don't like how I look in pictures, but I'm going to try to start radically accepting myself there too. It's a work in progress.
Sunday, January 31, 2016
When Mama Gets Sick
I don't get seriously sick a lot. I better knock on wood when saying that, as that is what I used to say about Janey. This winter hasn't been an easy one health-wise, and last week it was my turn. Starting about last Sunday night, I had a fever that got progressively worse, lots of coughing and all out body aches. On Wednesday I finally gave in and went to the doctor (thank you, Maryellen, for getting me there, literally and figuratively!) and a chest x-ray showed I had pneumonia. The doctor was quite sure I also had the flu, but because of my probable Sjogren's Syndrome, he wasn't able to get a swab for that. Either way, I was pretty ill. He gave me antibiotics and said to stay home and stay resting for at least 5 days, although I'd probably be tired and recovering well past that.
Today's been 5 days, and I do feel much, much better. Still very tired, and doing any little thing makes me need to take a nap, but so much better that is makes it almost worth being sick, to remember how good well feels.
The big, huge thank you here goes to Tony, for taking over all of my Janey duties. Being sick in bed with a child like Janey in the house is not easy. Last Monday, before we realized how sick I was, I got Janey off the bus, around 3, and took care of her until 4:30 when Tony got home. That hour and a half was about enough to do me in. It made me realize what a house of cards we live in. Janey needs full time supervision, every second, still now, even though it's easier than it was a few years ago. But with me barely able to move, she made a wreck of the kitchen getting some of her favorite unconventional snacks---things like ketchup and romano cheese and duck sauce. She came off the bus wet, which isn't common, so I changed her, which took almost all I had. Then within a few minutes she was wet again---another change. Then she had a toileting accident of the other kind---lots of cleaning up. I felt like I was going to collapse, and I did, when Tony got home.
The rest of the week, Tony just took over. He got her on the bus in the morning, which involves dressing her, giving her medication, brushing her hair and teeth, getting her something to eat (they have breakfast at school, but we always feed her at home too as she doesn't eat well at school), making sure her backpack is set, waiting for the bus with her---all that while he was getting ready for work himself. Then he came home early each day to get her back off the bus, took care of all her afternoon and evening needs, made supper for her and us...did it all.
My thought all week was how much I admire single parents of kids like Janey. I won't say what I've sworn never to say---"I don't know how you do it"---but I will say you are incredible for doing it. And that I hope you get support, and I wish I had millions of dollars to help you, or at least time to give you respite. Parenting kids like Janey is at least a two person job.
How did Janey take my illness? Quite well, actually. One thing that was kind of neat is I got a little of the Daddy treatment. Seeing me, after Tony got her off the bus and fed her and so on, seemed like a huge treat for her. I haven't really gotten that in the past. She came into the bedroom and had a huge smile on her face, and gave me a big, big hug. She was excited when I could haul myself over to snuggle with her on her bed. She was actually a sweetheart all week. If it had been a tougher week for her, as so many weeks are...well, I'm glad it wasn't.
I've got to sort out in my mind some realizations from this week. Mostly, I have to think about how easily everything could fall apart. If either Tony or I started to become more disabled from the health issues we already have, it's hard to picture how we would be able to take care of Janey. And the truth is, we will, at some point. Even without our on-going health issues, we are getting older. But as we've found so often, there's not a lot out there to help. We are grateful, as we always are, for her school. Tony couldn't have worked at all last week without school. I think next year I have to bite the bullet and find some kind of afterschool that works, if possible. And we have to start looking for that needle in a haystack, perhaps---some way to get Janey more care when she is an adult and we are...older too.
For now, I'm just happy to be on the mend. I will be glad when this winter is over!
Today's been 5 days, and I do feel much, much better. Still very tired, and doing any little thing makes me need to take a nap, but so much better that is makes it almost worth being sick, to remember how good well feels.
The big, huge thank you here goes to Tony, for taking over all of my Janey duties. Being sick in bed with a child like Janey in the house is not easy. Last Monday, before we realized how sick I was, I got Janey off the bus, around 3, and took care of her until 4:30 when Tony got home. That hour and a half was about enough to do me in. It made me realize what a house of cards we live in. Janey needs full time supervision, every second, still now, even though it's easier than it was a few years ago. But with me barely able to move, she made a wreck of the kitchen getting some of her favorite unconventional snacks---things like ketchup and romano cheese and duck sauce. She came off the bus wet, which isn't common, so I changed her, which took almost all I had. Then within a few minutes she was wet again---another change. Then she had a toileting accident of the other kind---lots of cleaning up. I felt like I was going to collapse, and I did, when Tony got home.
The rest of the week, Tony just took over. He got her on the bus in the morning, which involves dressing her, giving her medication, brushing her hair and teeth, getting her something to eat (they have breakfast at school, but we always feed her at home too as she doesn't eat well at school), making sure her backpack is set, waiting for the bus with her---all that while he was getting ready for work himself. Then he came home early each day to get her back off the bus, took care of all her afternoon and evening needs, made supper for her and us...did it all.
My thought all week was how much I admire single parents of kids like Janey. I won't say what I've sworn never to say---"I don't know how you do it"---but I will say you are incredible for doing it. And that I hope you get support, and I wish I had millions of dollars to help you, or at least time to give you respite. Parenting kids like Janey is at least a two person job.
How did Janey take my illness? Quite well, actually. One thing that was kind of neat is I got a little of the Daddy treatment. Seeing me, after Tony got her off the bus and fed her and so on, seemed like a huge treat for her. I haven't really gotten that in the past. She came into the bedroom and had a huge smile on her face, and gave me a big, big hug. She was excited when I could haul myself over to snuggle with her on her bed. She was actually a sweetheart all week. If it had been a tougher week for her, as so many weeks are...well, I'm glad it wasn't.
I've got to sort out in my mind some realizations from this week. Mostly, I have to think about how easily everything could fall apart. If either Tony or I started to become more disabled from the health issues we already have, it's hard to picture how we would be able to take care of Janey. And the truth is, we will, at some point. Even without our on-going health issues, we are getting older. But as we've found so often, there's not a lot out there to help. We are grateful, as we always are, for her school. Tony couldn't have worked at all last week without school. I think next year I have to bite the bullet and find some kind of afterschool that works, if possible. And we have to start looking for that needle in a haystack, perhaps---some way to get Janey more care when she is an adult and we are...older too.
For now, I'm just happy to be on the mend. I will be glad when this winter is over!
Wednesday, December 16, 2015
Sickness and good news
 |
| Tony keeping Janey entertained as we wait for the orthopedist |
Janey was out sick on Monday and Tuesday from school. She had a cough and cold, nothing severe, but enough to keep her home. She rarely gets sick. Of course, she had the Big Sick with the burst appendix last spring, but her staying home for a little sick day has hardly ever happened. She was in a pretty good mood, and we had a couple of quiet days at home (except for the appointment!) By Tuesday afternoon, she felt a lot better and was restless. It seemed like one of the first times I've seen Janey bored, although she doesn't have the words to say that. But she kept coming up with ideas---"go outside to see Daddy!" "go for a walk!" "take a shower!" She wanted to see Daddy when it was hours from the time he comes home, but we did take a little walk in the bizarrely warm December weather, and she had two showers.
Today was back to school, but the bus never showed up. Tony had told the driver she'd be out until Wednesday, and the driver said "Okay, see you Wednesday", but somehow, no-one showed up today. We've had a great driver this year, so we were surprised. Janey was not happy. She kept saying "Want to go on the bus? Want to go on the bus?" Finally I came inside and checked the GPS tracking, and saw the bus was at her school. I had already tried calling the hotline for buses, and h ad been on hold for about half an hour, so I called the school, but was told I'd just have to call the hotline. I then called her teacher, and asked if somehow a message could go to the driver that we hoped tomorrow he'd pick her up. I called the hotline again, and this time got someone, who said basically "Oh, yeah, they didn't get her. I don't know why" Very helpful. So I drove her to school, although now the illness had hit me and I had been up most of the night with a sore throat. Complain, complain, I know! Janey did well with the change of routine, and it was nice to get to see her teacher and an administrator of her program I've known for a long time who had been out on maternity leave.
I asked on the Facebook group page about other girls with autism and sickness. It seemed like a mix---some girls get sick a fair amount, but others are like Janey and rarely get sick. The ones that rarely get sick seem to have a very high pain tolerance, as I think Janey does. I've seen that pattern with a lot I've read about autism---either a child is sick all the time or hardly ever sick. I think personally it has to do with autoimmune issues, which is my working theory as to what probably caused Janey's autism. I think she has an autoimmune system on high alert all the time, so much so that minor illnesses never see the light of day, and that at some point, this affected her brain. But I am no doctor, and I don't believe in any one cause of autism. I think that's the case in Janey's particular situation because our family is riddled with autoimmune disorders. Almost everyone on either side of the family has at least one---diabetes, asthma, Raynaud's Disease, thyroid cancer ---and I have been suspected of having several---Sjogren's Syndrome and early stage scleroderma, in addition to whatever stopped my thyroid from working. So Janey would come by it naturally.
In speaking of sickness, I do worry about what would happen if I ever became chronically ill, from an autoimmune syndrome or something else. I don't think I will, but if I did, or if Tony's diabetes became worse...that's a scary thought. Janey has no understanding of anyone else's illness. She counts on us being healthy and able to help her. It's part of a house of cards situation. If either of us weren't able to care for her, I just don't know how it would work out. We deal with that worry by just hoping it doesn't happen. When Janey gets off the bus in a little bit, my sore throat and low fever and aches just need to go to the background. There's no other choice. And of course, somewhere in my mind is always the thought that someday, Tony and I will be gone. That is the black hole of thought, where I just can't go. What happens then? To keep living our daily life, we have to put aside some thoughts and just keep on keeping on.
So---I'm off to have some tea and Motrin and await my sweetheart's arrival home.
Thursday, November 7, 2013
Chocolate---or why I don't discount anyone's theories...
Usually, getting to sleep is not a problem for Janey. Waking in the night is a huge problem, but we almost never have trouble actually getting her down for bed the first time in the night. She usually does it herself. Bedtime rolls around, she gets in bed and goes to sleep. It's that easy. Last night, though, something was off. Bedtime came and went, and she was rocking and rolling and hyped up. We tried over and over to get her to settle down---no luck. Finally, ten o'clocked rolled around and she finally dozed off. Tony and I talked for quite a bit trying to figure out what had happened, when Tony suddenly remembered. When Janey got home from school, she ate the top off a chocolate frosted Dunkin' Donuts doughnut. There we had it, the culprit. We have long seen that if Janey has any, ANY, chocolate past around noon, she doesn't sleep. It's only chocolate that does this. She can have the occasional sip of coffee, or tons of sugar, or any other edible substance and she gets to sleep fine, but one M&M? Forget it.
Thinking about this made me realize why I try very hard not to discount anyone else's theories or ideas about autism. The chocolate thing seems on the face of it to make little sense. Why only chocolate? Why such a tiny amount? It makes so little sense to the scientific part of my brain I tend to forget it over and over, and again let her have "just a little" chocolate. And again and again, we see the results. This is why, although I don't think lactose or gluten affect Janey at all, I am quite sure that they do affect some kids with autism, and those kids are helped by diets without those substances. And why, although I don't think my children were affected badly by vaccines, I am sure that some children were. And the list goes on and on. I truly don't think autism has one cause. It has lots of causes. I have settled in my mind on the main cause of Janey's autism being a huge family propensity to auto-immune disorders, which hit her hard. I have finally gotten a fairly solid diagnosis in my latest round of medical weird test results--Sjogren's Syndrome (here's a good article about it if you want to know more---link), which is heavily autoimmune. This adds to my life list of autoimmune woes---thyroid disease, asthma and pre-eclampsia being the other ones. Both of Janey's brothers have asthma, and Tony is an insulin-dependent diabetic (as is most all of his family). All autoimmune problems, and there are more in our extended family. The doctor explained to me yesterday that it's been found recently there is a gene that greatly increases one's propensity to get an auto-immune disease, and our family is illustration number one. Thankfully, although I have blood markers also for Scleroderma, the doctor doesn't think I yet have that, just that I need to be very closely watched as there is a high chance I'll develop it in time. Not to ramble about family medical issues, but that is why in Janey's case, I feel increasingly sure we know the "why". But there's not one WHY for everyone, and there's not one cure for everyone (or any cure at all for many, many of the people with autism). If I hear about a miracle breakthrough for one child, I am thrilled for that child, but I don't assume it will translate to helping other kids.
I very much understand why, if you had a child that someone got cured by some diet or treatment, or if you had a child that you were sure had autism caused by a vaccine, you would want to get the word out, and you would feel frustrated that everyone didn't try the diet, or rally against the vaccines. You love your child, and you also want to help others. When I keep that in mind, I can understand some of the strong emotions out there regarding treatments or cures. I can listen to them, and accept that they did help some kids, and also feel secure in my own convictions about what hurt and what helps Janey. I'm sure many kids like Janey could wolf down a pound bag of M&Ms before bedtime and do fine. That doesn't mean that I am deluded in my belief that one single M&M can cause a sleepless night for Janey, and it doesn't mean they are deluded in thinking it doesn't affect their child. We are both right. We know our kids. We have to all work together, no matter what got us to this autism life.
Thinking about this made me realize why I try very hard not to discount anyone else's theories or ideas about autism. The chocolate thing seems on the face of it to make little sense. Why only chocolate? Why such a tiny amount? It makes so little sense to the scientific part of my brain I tend to forget it over and over, and again let her have "just a little" chocolate. And again and again, we see the results. This is why, although I don't think lactose or gluten affect Janey at all, I am quite sure that they do affect some kids with autism, and those kids are helped by diets without those substances. And why, although I don't think my children were affected badly by vaccines, I am sure that some children were. And the list goes on and on. I truly don't think autism has one cause. It has lots of causes. I have settled in my mind on the main cause of Janey's autism being a huge family propensity to auto-immune disorders, which hit her hard. I have finally gotten a fairly solid diagnosis in my latest round of medical weird test results--Sjogren's Syndrome (here's a good article about it if you want to know more---link), which is heavily autoimmune. This adds to my life list of autoimmune woes---thyroid disease, asthma and pre-eclampsia being the other ones. Both of Janey's brothers have asthma, and Tony is an insulin-dependent diabetic (as is most all of his family). All autoimmune problems, and there are more in our extended family. The doctor explained to me yesterday that it's been found recently there is a gene that greatly increases one's propensity to get an auto-immune disease, and our family is illustration number one. Thankfully, although I have blood markers also for Scleroderma, the doctor doesn't think I yet have that, just that I need to be very closely watched as there is a high chance I'll develop it in time. Not to ramble about family medical issues, but that is why in Janey's case, I feel increasingly sure we know the "why". But there's not one WHY for everyone, and there's not one cure for everyone (or any cure at all for many, many of the people with autism). If I hear about a miracle breakthrough for one child, I am thrilled for that child, but I don't assume it will translate to helping other kids.
I very much understand why, if you had a child that someone got cured by some diet or treatment, or if you had a child that you were sure had autism caused by a vaccine, you would want to get the word out, and you would feel frustrated that everyone didn't try the diet, or rally against the vaccines. You love your child, and you also want to help others. When I keep that in mind, I can understand some of the strong emotions out there regarding treatments or cures. I can listen to them, and accept that they did help some kids, and also feel secure in my own convictions about what hurt and what helps Janey. I'm sure many kids like Janey could wolf down a pound bag of M&Ms before bedtime and do fine. That doesn't mean that I am deluded in my belief that one single M&M can cause a sleepless night for Janey, and it doesn't mean they are deluded in thinking it doesn't affect their child. We are both right. We know our kids. We have to all work together, no matter what got us to this autism life.
Saturday, August 17, 2013
Partially Respited, Partially Not
This morning, Janey went to the respite house, which we are calling "The Treat House". They did a trip to the aquarium, then to the beach, then back to play outside. Janey seemed happy to be going there, and happy when Tony picked her up. The respite lasts from 8-2. We were lucky enough to get a scholarship for the rest of the year for their Saturday program, which otherwise would cost $65 a day and be a little out of range. It takes us about half an hour to drive to where it is, so it gives us 5 hours outside of the driving on days she goes, which I guess will be about twice a month (they have 3 Saturday programs a month, but I'm figuring on average only 2 of them will be something we think Janey would like). 10 hours might not seem like a lot in a month, but once we settle into it and really believe we have it, which still seems hard to believe right now, I think it will be a big help to us as a family. Today, unlike the first two times, we didn't attempt a meal out with the boys (that was getting expensive)---Tony did housework and I put a few things on ebay. It's surprisingly relaxing to work when you know you won't be interrupted every few minutes by hysterical crying.
Tony and Freddy are now out for a rare treat---a Red Sox game. They got free tickets, and I think they are enjoying themselves even though the tickets are in one of those spots Fenway Park is famous for---an obstructed view seat, which means just like it sounds like it means---you can't really see the field. But you are there! William has gone as our sole family representative at a party we were all invited to, and Janey and I are here. It's been---tiring. I start times like this with all kinds of resolutions to keep Janey happy. We went in the wading pool, we read together, I watched a video with her, and then she started freaking out, for no reason I can figure out. REALLY freaking out, as she does lately---scratching herself until she has welts, screaming the same nonsense sound over and over, trying hard to bite herself and me, flinging things--all that. At the same time, predictably, my afternoon tiredness kicked in. I think being Janey's mother alone could cause it, but it also is caused by the one autoimmune disorder I have been formally diagnosed with, Sjogren's Syndrome, and the other two that blood test show I probably have, but which I don't yet have all the symptoms of, lupus and scleroderma. Just for fun, I also have a severely underactive thyroid, which I'm taking about as high a dose of replacement as you can take, after having my dose raised over and over. So the tiredness---yeah. It's pretty bad. Times like this feel very, very, very, very tough. The morning's respite feels a million hours ago, and I feel like I am not grateful enough for it. I struggle to stay awake, and not just awake but alert---alert to Janey's self-destructive behavior, to her grabbing every food around to take a few bites of and then throw the rest on the floor and step on, to her pulling stuffing out of the couches, to her taking off her clothes over and over, to the possibility of her using the floor or furniture as a toilet...to all of that.
And so, what is my point? I guess it is that I feel guilty. I feel guilty that taking care of my own child is so tough. I feel like I should just be feeling grateful I had respite this morning, that she went to 6 weeks of summer school, that she will soon be starting school again, and still, just an afternoon and evening alone with her is so hard. I am angry at my own body, for feeling old and tired, for having stupid disorders that make me tireder. I am guilty feeling when I read blogs about people that homeschool autistic kids, that seem to have it all together, although in my realistic moments I know that even among autistic kids, Janey is tougher than most, and that what goes in a blog doesn't tell the whole story. I am my own toughest critic. I feel like a failure for not having "cured" Janey, although I would be the very first to say autism isn't curable, and to tell any other mother that such a guilt feeling is one they should banish from their minds for good. I know once I sleep, once I get a bit more housework done, once I have a chance to regroup, I will be able to take a more positive, proactive stance. But in the meantime, thank you to each and every one of you for again being there when I need to talk.
Tony and Freddy are now out for a rare treat---a Red Sox game. They got free tickets, and I think they are enjoying themselves even though the tickets are in one of those spots Fenway Park is famous for---an obstructed view seat, which means just like it sounds like it means---you can't really see the field. But you are there! William has gone as our sole family representative at a party we were all invited to, and Janey and I are here. It's been---tiring. I start times like this with all kinds of resolutions to keep Janey happy. We went in the wading pool, we read together, I watched a video with her, and then she started freaking out, for no reason I can figure out. REALLY freaking out, as she does lately---scratching herself until she has welts, screaming the same nonsense sound over and over, trying hard to bite herself and me, flinging things--all that. At the same time, predictably, my afternoon tiredness kicked in. I think being Janey's mother alone could cause it, but it also is caused by the one autoimmune disorder I have been formally diagnosed with, Sjogren's Syndrome, and the other two that blood test show I probably have, but which I don't yet have all the symptoms of, lupus and scleroderma. Just for fun, I also have a severely underactive thyroid, which I'm taking about as high a dose of replacement as you can take, after having my dose raised over and over. So the tiredness---yeah. It's pretty bad. Times like this feel very, very, very, very tough. The morning's respite feels a million hours ago, and I feel like I am not grateful enough for it. I struggle to stay awake, and not just awake but alert---alert to Janey's self-destructive behavior, to her grabbing every food around to take a few bites of and then throw the rest on the floor and step on, to her pulling stuffing out of the couches, to her taking off her clothes over and over, to the possibility of her using the floor or furniture as a toilet...to all of that.
And so, what is my point? I guess it is that I feel guilty. I feel guilty that taking care of my own child is so tough. I feel like I should just be feeling grateful I had respite this morning, that she went to 6 weeks of summer school, that she will soon be starting school again, and still, just an afternoon and evening alone with her is so hard. I am angry at my own body, for feeling old and tired, for having stupid disorders that make me tireder. I am guilty feeling when I read blogs about people that homeschool autistic kids, that seem to have it all together, although in my realistic moments I know that even among autistic kids, Janey is tougher than most, and that what goes in a blog doesn't tell the whole story. I am my own toughest critic. I feel like a failure for not having "cured" Janey, although I would be the very first to say autism isn't curable, and to tell any other mother that such a guilt feeling is one they should banish from their minds for good. I know once I sleep, once I get a bit more housework done, once I have a chance to regroup, I will be able to take a more positive, proactive stance. But in the meantime, thank you to each and every one of you for again being there when I need to talk.
Sunday, May 5, 2013
Sleep, Depression and all that jazz
I'm starting to think that if I want Janey to do something, I should just say here on this blog she never does it, because then she will. I said the other day she never naps, so of course a long nap of hers about ruined this weekend.
Friday night was a little tough. There were meltdowns, which I wrote about, but I did practice what I preached here and got her calmed down and sleeping. For a while. She was up about 3am, ready to party. She hasn't done too much night waking lately, but when she does, well, it's not easy. I'd say it's almost like torture. I feel desperately tired but I have to make myself stay awake, to keep Janey safe. I do everything within my power to try to get her to sleep, but if you have a child who has no desire to do things just to please you, who understands what you say only some of the time, who has an inner motor which goes off at its own times---trying to get them asleep is about as successful as trying to herd cats. Janey alternated between crying and hysterically laughing. We did what we often give in and do and put on Netflix, and let her watch some TV, which allows us to sometimes drift off for a minisecond if we are sure she's engrossed, but no longer than that, or she'll go into the kitchen and toss stuff around, or suddenly get a notion to jump on Tony or me, elbows out, poking us hard. Even if none of those things happen, after a while something triggers a desire for a snack, and she starts demanding "I want ketchup! I want sauce (tomato sauce)! I want noodles! I want chicken! I want purple ice cream (which is what she calls all ice cream now)!" For variety she throws in a few "I want to go outside! I want snuggle with Mama! (which always sounds so promising but only lasts a few seconds before she hops up again) I want shoes on! (which means she wants to go someplace in the car)" We say the right things---we don't eat in the middle of night, we are all going to sleep right now, it's not time to get up---but saying them, truthfully, does less than no good. And so we exist in a zombie-like state until she falls back asleep, which she did about 7, and then she woke up again about 8.
Usually she's up for the day, but for some reason, not Saturday. She lay down about 11 and slept right until 2. We tried to wake her half-heartedly a few times, but to be perfectly frank, it was pretty relaxing having her nap. We had 3 hours of Saturday to do what we wanted with---of course, within the house and boys allowing. When she got up, though, she was not in a good mood. It was a fussy afternoon and evening, until she got back to sleep about 8 (no matter what, she goes to bed about 8. Now watch that not be the case tonight). And yes indeed, she was up at 2am. We gave in pretty much and just got up with her. We watched TV, including at around 4 a very interesting nature show about Australia. Janey drifted off around then, and we were back to sleep until about 7.
That's a long story of sleep and not sleep---you are probably asleep now reading it. And it has induced in me today a huge bout of depressed feelings. When I have a few nights like that, I get NOTHING done the next day. I don't get laundry done, work done, cleaning done, dishes done, anything at all. Tony does a little better, and he has been a saint today---cooking and taking Janey to the playground and all that. And I sit around and hate myself for being so tired all the time. I try to reason with myself---I say all the right things---that anyone would be tired after a few nights like that, that just getting up and taking care of Janey every day is work enough, so on and so on. But I hate days like this. I hate feeling like a loser, like someone who barely has the energy to crawl to the couch and crochet all day. I hate the mess around me that never gets cleaned up, because I never have the energy to do it. I hate my medical issues that make me even tireder---the latest fun additions there are Sjogren's Syndrome and Undifferentiated Connective Tissue Disorder, which I won't get into the details of because my mother always taught me that no-one wants to hear all the details of your medical issues, but you can click on the names for a link if you are interested---but they both have the side effect of severe fatigue, as does my thyroid disorder. And yet I still feel like a lazy person for being tired, a hypochondriac although I have blood tests with concrete numbers to show I do have a reason for being so exhausted, beyond just being 47 and caring for a toddler in an 8 year old's body.
This isn't my best written entry here, I know. I am rambling a bit, probably because I can barely keep my eyes open. But it helps to write. Thanks for listening, if you've made it this far!
Tuesday, March 26, 2013
On tiredness, autoimmune issues and autism
The last month or so, a doctor's appointment I had yesterday was hanging over my head. I had a lot of blood tests a while ago, to try to figure out why my liver function is always a little compromised. One of the tests done was an ANA test. I don't know all the technical terms, but I know it's a test done for autoimmune disorders, and I know over the years I've had it done quite a few times, because of the severe preeclampsia I developed during pregnancy and also because of my thyroid issues. It's always been negative until this last time, when it was positive. The breakdown of what exactly was positive showed I might have something called scleroderma, as well as Sjogren's syndrome. I of course did what I do, and started researching them a lot, and convinced myself I did have scleroderma, and dreaded the appointment as I felt it would confirm that. However, the doctor said she had quite a list of autoimmune diseases she thought I might have, but scleroderma was low on the list. She did think I have Sjogren's syndrome, which mostly just causes dry eyes and a dry mouth. She ordered a bunch more blood tests and an echocardiogram, which I had yesterday. So now I'm waiting for the blood tests. Because I just love to self-diagnose and scare myself, I figured out from a few things she said and the questions she asks that she probably thinks I have lupus, which has been suspected in the past but the negative ANAs in the past always ruled out. I have the facial rash which is characteristic. But I don't know yet, and I shouldn't worry about things I don't know about. But I do, of course.
I write all this not to ramble about medical issues, but because to me it ties into autism. If autism is a type of auto-immune syndrome, or if that is one of the causes, then Janey certainly comes by it naturally. In addition to all the things I have or think I have, our family history features tons of diabetes and asthma, plenty of thyroid issues and thyroid cancer, Raynaud's syndrome, among other auto-immune fun. It makes the most sense to me of the various possible causes of autism that in Janey's case, she developed autism as an autoimmune response which affected her brain. I think autism has multiple causes, and I don't think everyone with autism got it that way. It's like saying someone has a fever, or wheezing. You can get a fever or wheezing for lots of reasons.
The main way I think I'm being affected by whatever it is that is affecting me is tiredness. I tried to explain to the doctor yesterday what this kind of tiredness is like. It's not like how you feel when you don't get a good night's sleep, although I get that kind too. It's a toxic kind of tiredness, a feeling that if I don't lie down and nap, I will pass out. It hits me with a huge force. I can't possibly keep from sleeping when it hits. Over the past few months, I've given in to this more. Naps used to be my guilty secret. I felt like I had to hide the fact I need a nap every day. Now, I am allowing myself to work it into my regular day. I need to nap an hour or two each day to make it through the day. Extreme tiredness is a huge part of lupus and scleroderma, and other autoimmune diseases, and that makes me feel a little less guilty about it.
If Janey didn't go to school, and after-school, and summer school, if I didn't have Tony on weekends, I don't think I could make it. Days I've been home alone with her, when the nap urge hits, it gets scary. I try to avoid that at all costs. If I can't, I barricade the living room as best I can, put Janey on my lap, put on the TV to a show she loves and catnap, waking every minute or so to make sure she's okay. That doesn't really give me the rest I crave, but it's the best I can do.
Autism doesn't exist in a vacuum. We all have other issues in our lives and our families besides autism. It's why autism respite is SO important. If I were a single parent, or if Janey had a shorter school day or no summer school, I don't know what would happen. She would be endangered, and so would I. I hope the supports I have stay in place. But I feel for those without such supports, and I worry about those families.
I write all this not to ramble about medical issues, but because to me it ties into autism. If autism is a type of auto-immune syndrome, or if that is one of the causes, then Janey certainly comes by it naturally. In addition to all the things I have or think I have, our family history features tons of diabetes and asthma, plenty of thyroid issues and thyroid cancer, Raynaud's syndrome, among other auto-immune fun. It makes the most sense to me of the various possible causes of autism that in Janey's case, she developed autism as an autoimmune response which affected her brain. I think autism has multiple causes, and I don't think everyone with autism got it that way. It's like saying someone has a fever, or wheezing. You can get a fever or wheezing for lots of reasons.
The main way I think I'm being affected by whatever it is that is affecting me is tiredness. I tried to explain to the doctor yesterday what this kind of tiredness is like. It's not like how you feel when you don't get a good night's sleep, although I get that kind too. It's a toxic kind of tiredness, a feeling that if I don't lie down and nap, I will pass out. It hits me with a huge force. I can't possibly keep from sleeping when it hits. Over the past few months, I've given in to this more. Naps used to be my guilty secret. I felt like I had to hide the fact I need a nap every day. Now, I am allowing myself to work it into my regular day. I need to nap an hour or two each day to make it through the day. Extreme tiredness is a huge part of lupus and scleroderma, and other autoimmune diseases, and that makes me feel a little less guilty about it.
If Janey didn't go to school, and after-school, and summer school, if I didn't have Tony on weekends, I don't think I could make it. Days I've been home alone with her, when the nap urge hits, it gets scary. I try to avoid that at all costs. If I can't, I barricade the living room as best I can, put Janey on my lap, put on the TV to a show she loves and catnap, waking every minute or so to make sure she's okay. That doesn't really give me the rest I crave, but it's the best I can do.
Autism doesn't exist in a vacuum. We all have other issues in our lives and our families besides autism. It's why autism respite is SO important. If I were a single parent, or if Janey had a shorter school day or no summer school, I don't know what would happen. She would be endangered, and so would I. I hope the supports I have stay in place. But I feel for those without such supports, and I worry about those families.
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