The title, of course, is a modification of one of my favorite book titles, "These Happy Golden Years" by Laura Ingalls Wilder. I hope some day I'll have a whole golden year, but for now, golden moments are enough, and last night, I had two of them, the kind of moments I think of in my head as movie-ending moments---moments that if you wanted to show a happy ending, you could freeze my life at, and you'd have one. Life doesn't freeze like that, but that probably makes the moments even more of a treasure.
Movie-ending moment one----Freddy and Janey are playing in the back yard. Freddy is fooling around with a long stick---balancing it on one hand, and then one finger. Janey is watching him with admiration, really paying attention to him, with the kind of look that younger siblings get when their older siblings do something that looks amazing to them. I am sitting watching them. The sun is low in the sky, and it hits a point where it lights up both Freddy and Janey's hair---Freddy's curly mop and Janey's blond straight tresses. For an instant, they both look like they are lit up from within, a flash-bulb scene of childhood and happiness.
Movie-ending moment two---Janey comes up to me and says "Do you want teat?" I am surprised. We are mainly coffee people, although we have tea on occasion, and I had no idea she knew that word. I ask her to show me the tea, and she goes to the kitchen and first points to the cold coffee in the coffeemaker. I say "Oh, you want coffee?" and she then points up to a high shelf, where weeks ago we put 4 small teacups she had picked out at the thrift store we loved, bagged together. We had washed them but then put them out of reach, as they were delicate, and hadn't mentioned them since. I get them down, and she eagerly takes two and puts them on the table, and leads me back over to the coffee, saying "Would you like some tea?" and finally the dense me gets it. She wants to have a tea party. I pour some cold coffee in both teacups, and she hands one to me, politely saying "Would you care for tea?" I take my cup, she takes hers, and then raises it to me and says "Cheers! Salute!" We toast, and we take a sip---hers not actually reaching her mouth, as for the first time, we are playing a pretend game. We are having a tea party. And I am crying.
When you first realize that you have a child with significant disabilities---which is different than when they are diagnosed, as it's the moment it becomes real, the moment you realize they aren't going to ever be "cured", the moment you see that you have taken a very unexpected turn and are indeed headed for Holland instead of Paris---you give up a lot of dreams. I'm not afraid to say that's hard. I don't dream of Janey getting a high school or college degree. I don't dream of her getting married, or having my grandchildren. And for a while, that can feel like despair, like a life of giving and not ever getting back. A perfect mother would say that's what a mother should do, but I think in real life, every mother dreams of the moments that seem like rewards. I am here to say that those moments do happen with children like Janey. There are wonderful moments, Happy Golden Moments, and they are as sweet as moments can be.
Rarer in Girls...Life with my daughter Janey, who is 21 and severely autistic
Tuesday, April 30, 2013
Sunday, April 28, 2013
Being Tough---my own way
First, I want to thank everyone who reads this blog. You guys keep me going. I wish I could know you all in real life. Maybe someday, I'll travel around and try to meet every last one of you. In the meantime, it's great to hear from you here, have you as friends on Facebook or just know you are out there someplace!
Last week I was hit with a huge amount of self-doubt. There were lots of reasons, some I'm not going to get into just yet, but I was feeling hugely down on myself. But today, thanks to thinking about things a new way with the help of all of you, I'm feeling much better.
I'm never going to be tough in some ways. You will not see me organizing fundraisers, or hiring top advocates to come with me to IEP meetings, or educating everyone that looks at Janey with a hint of anything but total support. I am thankful there are people that can do those things. If there weren't, we'd be back in the bad old days, and Janey would not even get an education.
But I am tough in other ways. I can't tell you how many times I've had a morning that for many, for most outside the wonderful world of Holland trips, would be the roughest morning they've ever had, and still, I somehow got Janey dressed and ready for school, and drove her there. I don't know how many nights from hell I've had, where Janey barely slept, screamed or laughed all night, was possessed by whatever possesses her, and still, I got up the next day and went about my life. I've stood strong while Janey lashed out at me with hitting or biting, and responded with hugs and comfort. I've continued to shop while Janey screamed in a way most people have never heard a child scream, all the while holding her hand and whispering words of encouragement. I'm not looking for rewards for this, but I'm realizing it's something to be proud of.
Many times, I've felt guilty because I don't go to more school meetings, I don't go to autism rallies, I don't go to the statehouse to advocate for autism. I feel I don't do enough for the greater autism world. But this morning, a song came into my head. I'm not very religious, but I love religious music. It's my form of faith, I guess. Going to Sunday School growing up in rural Maine, there was a children's hymn we sang every Sunday. Here are the lyrics...
Jesus bids us shine with a clear, pure light
Like a little candle, burning in the night
In this world of darkness, we must shine
You in your small corner and I in mine!
I've always loved that hymn. I picture a huge, dark room, and me in one of the corners, burning a small candle to fight the big darkness. I can't light up the whole room, but I can light up my corner. And that is what I am trying to do with this blog. I can light my little corner. I can write honestly and truthfully and in a heartfelt way. That is something I am able to do, and it's my way of lighting my small corner. It's my way of being tough, but true to myself. And I'll keep doing it.
Last week I was hit with a huge amount of self-doubt. There were lots of reasons, some I'm not going to get into just yet, but I was feeling hugely down on myself. But today, thanks to thinking about things a new way with the help of all of you, I'm feeling much better.
I'm never going to be tough in some ways. You will not see me organizing fundraisers, or hiring top advocates to come with me to IEP meetings, or educating everyone that looks at Janey with a hint of anything but total support. I am thankful there are people that can do those things. If there weren't, we'd be back in the bad old days, and Janey would not even get an education.
But I am tough in other ways. I can't tell you how many times I've had a morning that for many, for most outside the wonderful world of Holland trips, would be the roughest morning they've ever had, and still, I somehow got Janey dressed and ready for school, and drove her there. I don't know how many nights from hell I've had, where Janey barely slept, screamed or laughed all night, was possessed by whatever possesses her, and still, I got up the next day and went about my life. I've stood strong while Janey lashed out at me with hitting or biting, and responded with hugs and comfort. I've continued to shop while Janey screamed in a way most people have never heard a child scream, all the while holding her hand and whispering words of encouragement. I'm not looking for rewards for this, but I'm realizing it's something to be proud of.
Many times, I've felt guilty because I don't go to more school meetings, I don't go to autism rallies, I don't go to the statehouse to advocate for autism. I feel I don't do enough for the greater autism world. But this morning, a song came into my head. I'm not very religious, but I love religious music. It's my form of faith, I guess. Going to Sunday School growing up in rural Maine, there was a children's hymn we sang every Sunday. Here are the lyrics...
Jesus bids us shine with a clear, pure light
Like a little candle, burning in the night
In this world of darkness, we must shine
You in your small corner and I in mine!
I've always loved that hymn. I picture a huge, dark room, and me in one of the corners, burning a small candle to fight the big darkness. I can't light up the whole room, but I can light up my corner. And that is what I am trying to do with this blog. I can light my little corner. I can write honestly and truthfully and in a heartfelt way. That is something I am able to do, and it's my way of lighting my small corner. It's my way of being tough, but true to myself. And I'll keep doing it.
Thursday, April 25, 2013
When is autism going to make me tough?
I would like to get tough. By tough, I don't mean mean, or angry, or physically strong. I mean tough mentally, in that what people say to me won't bother me, in that I can not be moved to tears myself by Janey's crying, in that I can stand up for Janey always, to anyone. If it's true what the cliche says, and that you are given "special" kids because you are especially strong, well, as I've said before, a mistake was made. I am not strong.
What would a strong, tough mother do when, as I wrote about last time, someone cursed out my child in a grocery store? What would a tough mother do if, as happened when Janey was younger, she was promised a full day seat in preschool and another, tougher family got it instead? What would the kind of mother I wish I could be do when Janey has been screaming for hours demanding something? That tough mother would have confronted that woman and educated her on autism and politeness. She would have gone to the superintendent or higher demanding Janey get the full day placement she deserved. She would steel herself against Janey's crying, and absolutely never go out in the middle of the night to get her strawberry milk to make her stop crying.
I'm not doing opposite talk her---trying to say that being tough isn't really the right approach. In those cases above, it is. Being tough is what I should be. But I can't. I'm no good at it. I heard the phrase as a kid "You catch more flies with honey than with vinegar" and I've run with it my whole life. I am not confrontational. I am no good at being strong-willed. I want to keep everyone happy.
Autism parenting is supposed to change that. I've read about that happening in countless books and articles. People who never thought they had it in them are marching into schools or politician's offices or public rallies and speaking up, because their child has given them the strength to do it. And they are making firm decisions about raising their child---no more videos! no more middle of the demands! no more giving in!---and no matter how much their child cries or hits themselves or seems to be falling apart, they KNOW they are right. They stick by what they have decided, and everyone is better for it.
What do I do? I accept the half day placement. I walk away from the nasty woman and go to the car and cry. I don't make any demands. I tell Janey no to videos, no to strawberry milk, no to her 3rd bath of the day, and when she cries long enough, and looks frantic and sad, I give in. I don't want her to be sad. I don't want to confront people. I don't want to demand things.
Somewhere along the line, a cosmic mistake has been made. I'm not the tough mother I should be. Either there's some tough mother out there waiting in line for her autistic child that was given to me by mistake, or the transformation that was supposed to overtake me once I was given the autistic child was blocked somehow. I don't think I'm going to get tough at this point. I mean, if Janey was being attacked by a lion, I'd jump in. I think I've got enough protective instinct to protect her in cases like that, and in fact a few times I've found I did, when I truly felt she or my boys were wronged. But it takes a lion attack style happening to bring that out. I'm not a warrior mother. I love my kids more than I love life itself, but that has somehow never transformed into what all the autism literature has let me to expect, a huge infusion of tough strength.
What would a strong, tough mother do when, as I wrote about last time, someone cursed out my child in a grocery store? What would a tough mother do if, as happened when Janey was younger, she was promised a full day seat in preschool and another, tougher family got it instead? What would the kind of mother I wish I could be do when Janey has been screaming for hours demanding something? That tough mother would have confronted that woman and educated her on autism and politeness. She would have gone to the superintendent or higher demanding Janey get the full day placement she deserved. She would steel herself against Janey's crying, and absolutely never go out in the middle of the night to get her strawberry milk to make her stop crying.
I'm not doing opposite talk her---trying to say that being tough isn't really the right approach. In those cases above, it is. Being tough is what I should be. But I can't. I'm no good at it. I heard the phrase as a kid "You catch more flies with honey than with vinegar" and I've run with it my whole life. I am not confrontational. I am no good at being strong-willed. I want to keep everyone happy.
Autism parenting is supposed to change that. I've read about that happening in countless books and articles. People who never thought they had it in them are marching into schools or politician's offices or public rallies and speaking up, because their child has given them the strength to do it. And they are making firm decisions about raising their child---no more videos! no more middle of the demands! no more giving in!---and no matter how much their child cries or hits themselves or seems to be falling apart, they KNOW they are right. They stick by what they have decided, and everyone is better for it.
What do I do? I accept the half day placement. I walk away from the nasty woman and go to the car and cry. I don't make any demands. I tell Janey no to videos, no to strawberry milk, no to her 3rd bath of the day, and when she cries long enough, and looks frantic and sad, I give in. I don't want her to be sad. I don't want to confront people. I don't want to demand things.
Somewhere along the line, a cosmic mistake has been made. I'm not the tough mother I should be. Either there's some tough mother out there waiting in line for her autistic child that was given to me by mistake, or the transformation that was supposed to overtake me once I was given the autistic child was blocked somehow. I don't think I'm going to get tough at this point. I mean, if Janey was being attacked by a lion, I'd jump in. I think I've got enough protective instinct to protect her in cases like that, and in fact a few times I've found I did, when I truly felt she or my boys were wronged. But it takes a lion attack style happening to bring that out. I'm not a warrior mother. I love my kids more than I love life itself, but that has somehow never transformed into what all the autism literature has let me to expect, a huge infusion of tough strength.
Tuesday, April 23, 2013
Mean people and kind people
This morning, on the way to school, Janey and I stopped at the grocery store. She needed more juice boxes for school, where they keep a cupboard of snacks for her, as her eating is odd and often doesn't fit nicely into school lunch or packed lunch categories. Janey has been tough lately. She's making big strides with understanding and with doing things for herself, but as often is the case with her, those strides come with a period of strife. She had already freaked out in the car several times, but I really had to do the store---I wasn't going to send her off to school without the tools they need to get her through the day. That isn't fair for me to do. So I hoped for the best and went into the store.
At first, things were okay. Janey stayed with me, was cooperative and it seemed to be going well. It was just a quick shop, and I had hopes of getting out of there without problems. But then I made a huge error. I stopped at the magazine rack. I was hoping to pick up a crocheting magazine---my latest passion. But I didn't follow the rules of shopping with autistic kids. I lingered there for longer than the allowed 30 seconds. I must have looked for that magazine for a full 90 seconds, or maybe a second or two more. I didn't find it, and the damage was done. Janey wrenched out of my hand and ran down the aisle screaming. I caught up to her, but not before she had grabbed some crayons and opened them in anger. I tossed the crayons in the cart to buy---not for her, but because I couldn't leave them open on the shelf. She continued to freak out the whole time we were checking out---loud screaming, biting sleeves, a little head banging, general hysteria. We only had about 15 items, but it still felt like a long time standing there.
The woman behind me in line, when I caught her eye, smiled at me in a wonderful way. She then said "I hope both of you have a better day soon!" I wanted to hug her. It was exactly the kind of response that is so, so wonderful to get---a kind smile, a nice word. Then we walked toward the door, and a woman that had been in the next aisle stared me down as we both approached the door. She muttered something under her breath that I won't repeat here, but it was far from pleasant. It used some swear words in relation to Janey. I felt like she had kicked me. I just as quickly as I could got to the car, unloaded it, and had a few minutes sitting inside crying.
I don't understand what drives people to act like that. Did she honestly feel I had just brought a brat into the store to ruin her day? I know it's not fun to be around someone who is melting down. I know that better than most. But short of keeping Janey home at all times, I can't prevent the public from occasionally having to be present for one of her meltdowns. I just can't. And I'm sorry if they upset people. I truly am. I've become a little stronger over the years in dealing with stares and disapproval, but I have to say it's still incredibly hard for me to soldier through a time like today. Which is kind of the point I'd like to make to that nasty lady---I very much don't need you pointing out to me how Janey was behaving or how it bothered you. I'm plently aware of it.
But I'll end positively. The sweet, sweet woman that was so helpful with her words and attitude---there are a lot of people like that. And I hope they know how much a simple kind word can do. I hope I have a chance in life to pay it forward and be like her as often as possible, because I have learned what a huge difference that kind of kindness can make in someone's life.
At first, things were okay. Janey stayed with me, was cooperative and it seemed to be going well. It was just a quick shop, and I had hopes of getting out of there without problems. But then I made a huge error. I stopped at the magazine rack. I was hoping to pick up a crocheting magazine---my latest passion. But I didn't follow the rules of shopping with autistic kids. I lingered there for longer than the allowed 30 seconds. I must have looked for that magazine for a full 90 seconds, or maybe a second or two more. I didn't find it, and the damage was done. Janey wrenched out of my hand and ran down the aisle screaming. I caught up to her, but not before she had grabbed some crayons and opened them in anger. I tossed the crayons in the cart to buy---not for her, but because I couldn't leave them open on the shelf. She continued to freak out the whole time we were checking out---loud screaming, biting sleeves, a little head banging, general hysteria. We only had about 15 items, but it still felt like a long time standing there.
The woman behind me in line, when I caught her eye, smiled at me in a wonderful way. She then said "I hope both of you have a better day soon!" I wanted to hug her. It was exactly the kind of response that is so, so wonderful to get---a kind smile, a nice word. Then we walked toward the door, and a woman that had been in the next aisle stared me down as we both approached the door. She muttered something under her breath that I won't repeat here, but it was far from pleasant. It used some swear words in relation to Janey. I felt like she had kicked me. I just as quickly as I could got to the car, unloaded it, and had a few minutes sitting inside crying.
I don't understand what drives people to act like that. Did she honestly feel I had just brought a brat into the store to ruin her day? I know it's not fun to be around someone who is melting down. I know that better than most. But short of keeping Janey home at all times, I can't prevent the public from occasionally having to be present for one of her meltdowns. I just can't. And I'm sorry if they upset people. I truly am. I've become a little stronger over the years in dealing with stares and disapproval, but I have to say it's still incredibly hard for me to soldier through a time like today. Which is kind of the point I'd like to make to that nasty lady---I very much don't need you pointing out to me how Janey was behaving or how it bothered you. I'm plently aware of it.
But I'll end positively. The sweet, sweet woman that was so helpful with her words and attitude---there are a lot of people like that. And I hope they know how much a simple kind word can do. I hope I have a chance in life to pay it forward and be like her as often as possible, because I have learned what a huge difference that kind of kindness can make in someone's life.
Sunday, April 21, 2013
Janey Live on Video, singing and talking!
I've had a few people ask if I could post a video of Janey's singing. I've always had a hard time catching her in a true singing mood, and I've made some attempts that didn't work out. But this afternoon, she was in the backyard running around and singing eagerly, so I grabbed my camera and started filming. Hopefully, the link to YouTube will work and Janey can make her debut here!
There are a few things in the video that are very typical of Janey. One is the pacing around. I had to follow her back and forth across the back yard to stay somewhere near her. Janey does this the whole time she is outside, pretty much. Another is how I prime her for the songs. I sing the first line or so, and she finishes, if she likes the song and wants to. She sings lots of songs on her own, but in order to get some sung for the video, it was easier to do the priming! You will also notice how she completely ignores my direct questions, like asking if she is ready to go inside, and my direct requests, like at the end when I asked her to say goodbye. This is pretty common! It's only the last month or so I sometimes get a "yes" answer to yes or no questions, but opened ended questions are just about never answered.
You can also see toward the end that Janey is getting upset, or you might not see that, but she is. When I asked her to sing "She'll be Coming Round the Mountain", she started singing a bit in her frantic voice, and then she was repeating "Hickory Dickory Dock" over and over. I could tell she'd had enough, so I ended the video.
Growing Understanding
Lately, Janey seems to be making big strides in understanding what we say to her. Or maybe she always understood, but didn't respond most of the time. But the last week or so, I feel like she's actually listening to us.
A good example was last night. Janey wanted very badly to eat Cheez-Its on my bed. I told her she couldn't. She said "YES!" and I laughed and said "No!" She said "Yes!" and laughed too. It felt like a little conversation. Then I said she'd have to take the Cheez-its in the kitchen to eat, and she did exactly that---took them in there, grabbed a few, came back next to the bed eating them, but not on the bed, and then went to get more. She seemed to be pushing it as far as she could without directly doing what I said she couldn't, which felt pretty typical 8 year old to me!
Yesterday we all went as a family to a great BBQ place. We don't do much as a family of five any more. The boys have their own schedules, and our small cars are pretty crowded with us of us in them, but I felt determined after this past week of horrors to do something as a family. It at first seemed like it was going to be a disaster. After we ordered, I asked Janey where she wanted to sit, and she tried to lead me out the door. I made her come back, and we sat down, but she started to get upset. I decided to take her back out until the food came. As we walked around outside, I explained what would happen---"It's a meat restaurant. They are going to bring us lots of meat and some cucumbers and some spinach and some rice. We'll have lots to eat" It's the kind of thing I always hear recommended for kids with autism, like a social story, but in the past, when I told them, it had no impact. This time, it somehow clicked. We went back in, and Janey sat quite nicely and ate. It helped that the food was fast and great, and that no-one expects dainty behavior when you are chowing down on ribs. At one point, sitting there, all five of us, I said "It feels like a family of five here, like Janey is the same as the rest of us" That sounds sort of wrong, but it's a true feeling---It was one of the first times ever I felt like I was sitting down with my three kids enjoying myself, not somehow trying to keep it all together with Janey, being four caretakers and her. Of course, the minute I said that Freddy rolled his eyes and I saw Janey had stuffed a big hunk of paper towel in her mouth, but still...the moment had happened.
There's no miracle breakthroughs with Janey. This has still been an awfully tough week with her. But little steps are great. Just now, she'd been watching her videos all morning (lately, we are back to Belle's Enchanted Christmas, and I am extremely sick of it). I decided that Tony and I would watch an episode of Coach on Netflix for a break. Janey tried hard to grab the remote and change the show, and got it a few times. But we both kept telling her "It's our turn for TV. We are going to watch a show, and then it will be Janey's turn again", and gradually, she stopped trying to change the show. I won't say she was thrilled, but I think on some level she actually got it that it was our turn. Now it's her turn again.
School starts back tomorrow, thankfully. I hope there is never another week like this in Boston. But like with the city of Boston, life goes on, and you have to be strong and keep trying and keep feeling pride when you can. It's all you can do.
A good example was last night. Janey wanted very badly to eat Cheez-Its on my bed. I told her she couldn't. She said "YES!" and I laughed and said "No!" She said "Yes!" and laughed too. It felt like a little conversation. Then I said she'd have to take the Cheez-its in the kitchen to eat, and she did exactly that---took them in there, grabbed a few, came back next to the bed eating them, but not on the bed, and then went to get more. She seemed to be pushing it as far as she could without directly doing what I said she couldn't, which felt pretty typical 8 year old to me!
Yesterday we all went as a family to a great BBQ place. We don't do much as a family of five any more. The boys have their own schedules, and our small cars are pretty crowded with us of us in them, but I felt determined after this past week of horrors to do something as a family. It at first seemed like it was going to be a disaster. After we ordered, I asked Janey where she wanted to sit, and she tried to lead me out the door. I made her come back, and we sat down, but she started to get upset. I decided to take her back out until the food came. As we walked around outside, I explained what would happen---"It's a meat restaurant. They are going to bring us lots of meat and some cucumbers and some spinach and some rice. We'll have lots to eat" It's the kind of thing I always hear recommended for kids with autism, like a social story, but in the past, when I told them, it had no impact. This time, it somehow clicked. We went back in, and Janey sat quite nicely and ate. It helped that the food was fast and great, and that no-one expects dainty behavior when you are chowing down on ribs. At one point, sitting there, all five of us, I said "It feels like a family of five here, like Janey is the same as the rest of us" That sounds sort of wrong, but it's a true feeling---It was one of the first times ever I felt like I was sitting down with my three kids enjoying myself, not somehow trying to keep it all together with Janey, being four caretakers and her. Of course, the minute I said that Freddy rolled his eyes and I saw Janey had stuffed a big hunk of paper towel in her mouth, but still...the moment had happened.
There's no miracle breakthroughs with Janey. This has still been an awfully tough week with her. But little steps are great. Just now, she'd been watching her videos all morning (lately, we are back to Belle's Enchanted Christmas, and I am extremely sick of it). I decided that Tony and I would watch an episode of Coach on Netflix for a break. Janey tried hard to grab the remote and change the show, and got it a few times. But we both kept telling her "It's our turn for TV. We are going to watch a show, and then it will be Janey's turn again", and gradually, she stopped trying to change the show. I won't say she was thrilled, but I think on some level she actually got it that it was our turn. Now it's her turn again.
School starts back tomorrow, thankfully. I hope there is never another week like this in Boston. But like with the city of Boston, life goes on, and you have to be strong and keep trying and keep feeling pride when you can. It's all you can do.
Friday, April 19, 2013
A very tough week
When I say this was a very tough week, I am certainly not just talking about my own family. Living in Boston, it's probably been the toughest week for almost everyone that they've had in a long time---the horrible Marathon bombing, the shootout last night, the shelter in place order today---yes, not a week any of us want to relive. Most of all, of course, the families of those who have lost their lives, including the family of the little 8 year old boy who lived less than half a mile from Janey's school. We didn't know him, but I am very sure that many people I know did.
On a personal level, it's been a very, very tough week with Janey too. She was not happy all week. I'm sure part of that has to do with our preoccupation at times with the news, and her ability to sense our mood was not normal. It was vacation week, and she was home. We didn't have a lot of plans for the week, and even less once all the events started to happen. Janey spent huge parts of each day crying. She wanted school, I am sure. She was on a huge roll at school, and she seems to be in the middle of some kind of leap forward with thinking and talking, which is wonderful, but it makes for a hard time to be cooped inside. At a few points when she was playing outside, she decided it was time to walk to get ice cream, which is down the street, and rushed toward the sidewalk. Luckily, we have a gate on our driveway and no other way to the sidewalk, so she couldn't get far, but the gate isn't always closed, although it was those times. That illustrates why I don't try taking her many places on my own, and my teenage boys are less and less inclined to want to head out for a fun day with their sister. I can't tempt them with meals out or promises to buy something. They get as tired as I do of the stares. So when I'm on my own with Janey, I don't take her out much. And today, when we could have (Tony was home, as his office was closed due to all going on), we weren't supposed to leave the house.
Janey has actually been happier today. A lot of that is having Tony and me both around. She doesn't like to not have at least one person paying close attention to her. She gets that at school, and she wants it at home. She's quite chipper today with that kind of attention. But if we let our focused attention stray just for a minute, she finds a way to get it back, it seems, or she just finds a way to entertain herself---squeezing out toothpaste, tossing things across the room, smashing on windows, checking if the fridge is unlocked and taking things out, pouring soda after shaking up the bottle, putting things in her mouth like paper or yarn....it goes on. It seems like all week, it's either been the crying or the mischief. It's hard to say what is more tiring. I guess for me, it's the crying, but both are not easy.
I think also Janey is going through a growth spurt. She is hungry around the clock, hugely hungry. I remember both boys having a period of time like that when they were 8, and again about when they were 11. It happened just before they grew a lot. So that's not necessarily an autism thing, but it can be hard to keep up with her demands, as she doesn't much understand "Wait until lunch" or "You've had enough right now" She just repeats her demands over and over and over "Do you want to get me some bacon? Do you want ice cream? Onions, please, onions! Pizza right now! I need some nuts! You need some oatmeal!" Pronouns reversed or not, it's endless.
Overall, a week I would just as soon forget forever, for so many reasons. I am proud to live in Boston, which I can truly say is one of the best cities on Earth, but this particular week has been a painful one for Boston. And one that has made me think often that no matter how tough parenting an autistic child might be, I am lucky to have my Janey and my boys. Incredibly lucky.
On a personal level, it's been a very, very tough week with Janey too. She was not happy all week. I'm sure part of that has to do with our preoccupation at times with the news, and her ability to sense our mood was not normal. It was vacation week, and she was home. We didn't have a lot of plans for the week, and even less once all the events started to happen. Janey spent huge parts of each day crying. She wanted school, I am sure. She was on a huge roll at school, and she seems to be in the middle of some kind of leap forward with thinking and talking, which is wonderful, but it makes for a hard time to be cooped inside. At a few points when she was playing outside, she decided it was time to walk to get ice cream, which is down the street, and rushed toward the sidewalk. Luckily, we have a gate on our driveway and no other way to the sidewalk, so she couldn't get far, but the gate isn't always closed, although it was those times. That illustrates why I don't try taking her many places on my own, and my teenage boys are less and less inclined to want to head out for a fun day with their sister. I can't tempt them with meals out or promises to buy something. They get as tired as I do of the stares. So when I'm on my own with Janey, I don't take her out much. And today, when we could have (Tony was home, as his office was closed due to all going on), we weren't supposed to leave the house.
Janey has actually been happier today. A lot of that is having Tony and me both around. She doesn't like to not have at least one person paying close attention to her. She gets that at school, and she wants it at home. She's quite chipper today with that kind of attention. But if we let our focused attention stray just for a minute, she finds a way to get it back, it seems, or she just finds a way to entertain herself---squeezing out toothpaste, tossing things across the room, smashing on windows, checking if the fridge is unlocked and taking things out, pouring soda after shaking up the bottle, putting things in her mouth like paper or yarn....it goes on. It seems like all week, it's either been the crying or the mischief. It's hard to say what is more tiring. I guess for me, it's the crying, but both are not easy.
I think also Janey is going through a growth spurt. She is hungry around the clock, hugely hungry. I remember both boys having a period of time like that when they were 8, and again about when they were 11. It happened just before they grew a lot. So that's not necessarily an autism thing, but it can be hard to keep up with her demands, as she doesn't much understand "Wait until lunch" or "You've had enough right now" She just repeats her demands over and over and over "Do you want to get me some bacon? Do you want ice cream? Onions, please, onions! Pizza right now! I need some nuts! You need some oatmeal!" Pronouns reversed or not, it's endless.
Overall, a week I would just as soon forget forever, for so many reasons. I am proud to live in Boston, which I can truly say is one of the best cities on Earth, but this particular week has been a painful one for Boston. And one that has made me think often that no matter how tough parenting an autistic child might be, I am lucky to have my Janey and my boys. Incredibly lucky.
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