I'm not much of a trend follower when it comes to autism. I don't generally sign onto any particular philosophy or treatment plan or diet or "cure". If I were forced to pick an approach to pledge allegiance to, however, it would most likely be autism acceptance. The meaning of that, as I see is, is accepting a person with autism as they are, valuing them for how they act and function rather than what they might be able to become if changed. This philosophy fits with how I raised Janey's siblings, for better or worse. With both boys, there came a point when I realized there wasn't really a thing I could do to change their basic make-up, and that in fact I would not want to. Realizing that logically led to doing some things differently. For example, my second son and I used to battle daily over homework. He would have a lot of it, but would put it off, refuse to work on it, get angry when I mentioned it---the fights were truly putting a wedge between us. I realized I didn't want that to be our relationship. So I let it go. I stopped having anything to do with his homework. I left that part of his life up to him. And he took responsibility, but even if the result had been him not ever doing a lick of homework again, that was something I had to accept. I wasn't willing to have his teen years consist of one big endless fight. The same general scenario played out many times in parenting both boys, and I learned that you can't change your kids. That doesn't mean you let them act any old way. I am pretty old school in insisting on politeness and respect, but that is insisting on a behavior, which to me seems different than insisting on a personality trait.
So how does this tie into Janey and autism? What can I do to show her that I accept and value her as she is? How does this work with a child who is not usefully verbal, who cries for long spells, who can't spell out to me what she is feeling?
An incident this weekend let me to a lot of thinking about acceptance. I was trying to work on typing with Janey. I've heard about other girls (and boys) who seem similar to her learning how to type, and being able to tell in amazing clarity what they are thinking. Janey has hated any attempt of mine to get her to try iPad communication programs, and I thought I'd take a new route. We sat together and I encouraged typing on the keyboard. Janey responded quickly---by going up to the top right of the screen and clicking on the little "x" to close the program. She's got some good computer skills. I opened it again and she closed it again. We went back and forth about 6 times, and finally she started to scream. This is very similar to the many times I tried various communication programs on the iPad with her. It's not that she doesn't like the iPad or the computer. She loves them both, and uses them with complete ease. But she hates to be directed. Left to her own devises, she'll try everything on the iPad, and explore YouTube for hours. But if I step in and try to have her work on what I want her to, she shuts down---literally shuts down the program and figuratively shuts down mentally.
So I gave up on the typing. I decided to tell her so, directly. I said "You don't seem to want to type with me. We won't do that for now. If you want to try it again another time, we can, but it's up to you" The look she gave me---I wish it was recorded. It was a wonderful look---a look of relief and amazement. And she started to sing. She sang three verses of "Hark the Herald Angels Sing", in her angelic voice.
I realized, on reflecting, that Janey does communicate pretty well. She doesn't communicate the way I am trying to get her to, but she was pretty plain in what she was saying. She closed the program, over and over and over. She cried when I kept trying to force her. And when I told her we would stop, she sang one of her favorite songs, a song that talks about glory and peace.
What if I choose to accept Janey--fully? What if I don't make that acceptance dependent in any way on her changing? What if I accept the crying spells? What if I accept her quirky interests? What if I believe her when she tells me what she wants and doesn't want to do, even if it's not in a direct way? What if I assume she does understand what she wants and what I want? I will still insist on politeness and respect, as far as she is able to provide those. She's not going to bite us, or fling things on the floor, or get her way if she wakes in the night wanting the TV on full blast. Accepting kids doesn't mean letting them do whatever they want. It has everything to do with respecting her while insisting she respect others. It has to do with listening to what she has to say, no matter how she chooses to say it. It has to do with letting her be who she is, because she is amazing, right now, right the way she is.
Rarer in Girls...Life with my daughter Janey, who is twenty and severely autistic
Monday, July 28, 2014
Friday, July 25, 2014
Puzzling Out Janey's Limited Speech
Of all the mysteries Janey presents, the most frustrating one to me is her speech. Why is it that she doesn't talk more, and that her talking basically never advances? Or, perhaps the more correct question---why is it that she talks at all, while other girls with autism I've heard of that seem more advanced in most ways than her DON'T talk? Either way, why is it so hard for her to communicate?
Last night, I spent some time while not being able to sleep thinking about the possible reasons for Janey's limited speech, and eliminating them one by one in my mind, trying to get to the core of it. Here are the reasons I ruled out, and why...
Inability to produce words verbally
That one is easy to rule out, because Janey can say anything verbally. I know this because she DOES talk constantly, using delayed echolalia. Janey can recite the full script of movies and TV shows she's seen years ago. She can say several Three Stooges skits line for line. She remembers lots of poems she's heard at school, to say nothing of the thousands of songs she can sing. She has no problem producing speech sounds, with the exception of "th", which she has a bit of trouble with, but she says it anyway, cutely.
Lack of vocabulary
It would certainly be possible that Janey could have a lack of vocabulary, because the words she says via echolalia could be meaningless to her---just recited words. But that doesn't seem to be the case. The most vivid way this is shown is when she's in a very rare cooperative mood and she will allow herself to be quizzed on single words, with iPad programs that show pictures so she can name the words. She knows amazing amounts of words---mostly nouns, but some verbs and adjectives. She can name obscure things like "pelican", "castle", "earmuffs", "peacock" and more. We have watched her do this in amazement several times. She KNOWS the words.
Lack of understanding of spoken language
This would be more of a contender until recently. But Janey has shown more and more how good her receptive language is. The best way she shows this is by following complicated instructions. She often will come to me with something she wants to eat, like a jar of salsa (which she eats on its own). I will say something as complex as "You can have that after you close the refrigerator and get me a bowl and spoon, and take off your top so we can put on an old one that can get dirty", and she will do all I say to get the salsa. I can ask her to get ready for school, and she'll find her shoes and backpack and walk to the door to head out to the bus. She knows what we are saying.
Lack of desire to communicate
I don't think this is it. Janey asks us for things all day long, and often she is frustrated that we don't get what she means. For example, her most used phrase for about a year now is "Snuggle on the bed" However, this can mean about 10 things, including "I want to snuggle with you", "I want you to get up from the bed (or couch) where you are so I can be there instead of you", "I am tired and want my pajamas on so I can go to bed" or "Stop doing whatever you are doing and pay attention to me", among others. She very much wants us to know what she is trying to say, but she doesn't seem able to narrow it down, even with us modeling a phrase once we do figure out what she means that particular time.
So----Why? Why is Janey's speech about the same as it was at age three, when she first regressed, and worse than it was at age 2, before she did? Why, despite years of speech therapy three times a week, has she made no progress that lasts? I don't know.
Many people have suggested augmented communication for Janey, like a speech program on the iPad. I downloaded the trial version of several such programs a few months ago, and have been trying hard to get Janey interested. She isn't, not one tiny bit. In fact, she now gets angry when she sees me showing them to her or even using them around her. She immediately grabs the iPad and switches to something else. Maybe I don't know how to teach them correctly, but she seems extremely bothered by the computer voice, although I've tried changing it. Janey is HUGELY sensitive to noise and sounds. She is an auditory learner, unlike many kids with autism who are visual learners. I think this makes AC doubly tough for her. She isn't interested in visual symbols, and she doesn't like to hear voices that don't sound like she thinks they should, just like she is driven crazy by off-tune music. So it seems like we are stuck with trying to get her to talk to conventional way.
I wish very much I could figure out how to help Janey with talking. However, I am starting to feel it's not going to happen. I'm not a speech therapist, but the very good speech therapists she's seen don't seem to have a handle on how to help her either. Maybe I need to just be grateful to be able to have her talk at all, and the truth is, I am, very much so. I know it's not a given, and I'm very lucky she does talk, even in a limited way, and that she does understand. I'd stop striving for more if she were happier. But when she screams and screams, I can't help but feel that she would be happier if she could tell us more easily what she is thinking. And so I will keep trying to figure it out.
Last night, I spent some time while not being able to sleep thinking about the possible reasons for Janey's limited speech, and eliminating them one by one in my mind, trying to get to the core of it. Here are the reasons I ruled out, and why...
Inability to produce words verbally
That one is easy to rule out, because Janey can say anything verbally. I know this because she DOES talk constantly, using delayed echolalia. Janey can recite the full script of movies and TV shows she's seen years ago. She can say several Three Stooges skits line for line. She remembers lots of poems she's heard at school, to say nothing of the thousands of songs she can sing. She has no problem producing speech sounds, with the exception of "th", which she has a bit of trouble with, but she says it anyway, cutely.
Lack of vocabulary
It would certainly be possible that Janey could have a lack of vocabulary, because the words she says via echolalia could be meaningless to her---just recited words. But that doesn't seem to be the case. The most vivid way this is shown is when she's in a very rare cooperative mood and she will allow herself to be quizzed on single words, with iPad programs that show pictures so she can name the words. She knows amazing amounts of words---mostly nouns, but some verbs and adjectives. She can name obscure things like "pelican", "castle", "earmuffs", "peacock" and more. We have watched her do this in amazement several times. She KNOWS the words.
Lack of understanding of spoken language
This would be more of a contender until recently. But Janey has shown more and more how good her receptive language is. The best way she shows this is by following complicated instructions. She often will come to me with something she wants to eat, like a jar of salsa (which she eats on its own). I will say something as complex as "You can have that after you close the refrigerator and get me a bowl and spoon, and take off your top so we can put on an old one that can get dirty", and she will do all I say to get the salsa. I can ask her to get ready for school, and she'll find her shoes and backpack and walk to the door to head out to the bus. She knows what we are saying.
Lack of desire to communicate
I don't think this is it. Janey asks us for things all day long, and often she is frustrated that we don't get what she means. For example, her most used phrase for about a year now is "Snuggle on the bed" However, this can mean about 10 things, including "I want to snuggle with you", "I want you to get up from the bed (or couch) where you are so I can be there instead of you", "I am tired and want my pajamas on so I can go to bed" or "Stop doing whatever you are doing and pay attention to me", among others. She very much wants us to know what she is trying to say, but she doesn't seem able to narrow it down, even with us modeling a phrase once we do figure out what she means that particular time.
So----Why? Why is Janey's speech about the same as it was at age three, when she first regressed, and worse than it was at age 2, before she did? Why, despite years of speech therapy three times a week, has she made no progress that lasts? I don't know.
Many people have suggested augmented communication for Janey, like a speech program on the iPad. I downloaded the trial version of several such programs a few months ago, and have been trying hard to get Janey interested. She isn't, not one tiny bit. In fact, she now gets angry when she sees me showing them to her or even using them around her. She immediately grabs the iPad and switches to something else. Maybe I don't know how to teach them correctly, but she seems extremely bothered by the computer voice, although I've tried changing it. Janey is HUGELY sensitive to noise and sounds. She is an auditory learner, unlike many kids with autism who are visual learners. I think this makes AC doubly tough for her. She isn't interested in visual symbols, and she doesn't like to hear voices that don't sound like she thinks they should, just like she is driven crazy by off-tune music. So it seems like we are stuck with trying to get her to talk to conventional way.
I wish very much I could figure out how to help Janey with talking. However, I am starting to feel it's not going to happen. I'm not a speech therapist, but the very good speech therapists she's seen don't seem to have a handle on how to help her either. Maybe I need to just be grateful to be able to have her talk at all, and the truth is, I am, very much so. I know it's not a given, and I'm very lucky she does talk, even in a limited way, and that she does understand. I'd stop striving for more if she were happier. But when she screams and screams, I can't help but feel that she would be happier if she could tell us more easily what she is thinking. And so I will keep trying to figure it out.
Wednesday, July 23, 2014
Downs and Ups and Downs
With Janey, part of what makes every day an adventure is you don't know which Janey you're going to get that day. That's been particularly so this past week. Usually, Janey's moods last a few weeks or so, but lately, they have picked up the pace and seem to change every few days. It's emotionally a roller coaster.
Last Friday was a very tough day. Janey got home from summer school about 3. She had had some tough times all week after school. I spent a lot of the day Friday while she was at school trying to think of strategies to help the couple hours between when she gets home and when Daddy gets home be happier ones for her. I planned out a list of things we could do, depending on what she wanted---lots of snuggling, watching videos together, having a shower, playing outside, eating, reading---whatever she wanted. I planned to be totally at her disposal, or to just let her rest, if that is what she wanted. I was determined it would be a good afternoon. Well, she got off the bus crying, and things deteriorated from there. She wanted to do nothing I had planned. She wanted to scream. Between screams, she wanted to SAY she wanted something, like a drink, a snuggle, a shower, time outside, and then as soon as I tried to do that thing with her, she wanted to scream some more, and bite her arm, and fling herself down on her bed, and be hysterical. I was tired out of my mind after half an hour or so. In frustration, I finally yelled out "I can't take this any more!" That stopped her cold---she seemed interested in the phrase, one I don't think I've ever said to her before. I really don't like saying things like that to her, ever. She took it up herself, and started adding it into her screams---a good long scream, and then "I CAN'T TAKE THIS ANY MORE!" Which I bet she couldn't. I finally just kind of gave up---I let her scream it out, while of course keeping a close eye on her to make sure she didn't hurt herself or try to leave the house or anything. Tony got home, and she instantly dried her tears and hugged him. I felt about 2 feet tall.
So....I wasn't much looking forward to how the day would go Saturday. However, somehow, by some twist of fate or miracle, both Saturday and Sunday were amazing. It was probably the best weekend we've ever had with Janey. Ever. She was extremely happy, extremely engaged, full of hugs, saying all kinds of cool and relevant things, a joy beyond words. I have no idea why, any more than I have any idea why Friday afternoon was so awful. I've been trying very hard lately to live in the moment--to not spend the bad moments projecting into the future, to not spend the good moments worrying they won't last---to just accept each moment as it comes. I've got a long way to go with that, and I am sure I did spend too much of the weekend trying to record in my mind just what circumstances had led to things being so good. However, I don't think it was anything in particular. It was as random as any mood of Janey's. But it was wonderful. We drove her brother to work both days, and she piped up in the car with comments here and there "Maybe we are lost!" "Pepperoni Pizza!", and with songs and just happy, non-manic laughter. We got her some pizza, and she sang "Staying Alive" to the cashier and charmed her. We went into the Target and tried on hats and glasses and necklaces. We went to the arboretum near us and looked at trees. We snuggled a lot, watched some TV, ate a lot, all the glow of her wonderful mood. At one point, in the car, Tony and I said to each other that when she is in that kind of mood, there is no child on earth more wonderful. I remarked that if she was ALWAYS in that good a mood, we probably would be used to it. It wouldn't seem as wondrous. And we both got teary-eyed, thinking of that.
So...Monday was okay. Not as happy a day, but okay. And then today---after school, it was another Friday. So much screaming and crying and arm biting. It was hot, and I offered to fill the wading pool. Janey wanted to, but as soon as we got back there, the ear-shattering screaming started. For a few minutes, I still tried to fill the pool. But I couldn't for long. Her screaming is loud enough to be heard a block away. It sounds like she's being tortured. I turned off the water and took her in, where she continued to scream pretty much until Daddy got home, and this time, even Daddy couldn't fit it. She screamed off and on all evening.
Now she is asleep, and I am weary but unable to sleep. I wish so much I understood my little girl better. I wish I could figure out how to give her more happy days. Seeing how very, very happy she can be, it sometimes makes it almost harder, because I feel like there must be a key someplace. There must be a way to pry open the door to the happiness that seems to snap shut suddenly and randomly. But I don't know how. And she can't tell me.
Saturday, July 19, 2014
Low Functioning Autism and Toys
If you are a parent of a child with low-functioning autism, everything I'm going to say here is probably preaching to the choir. You know what toys work for your child, and although they might not be the same ones I mention here, you know how hard it is to find toys they like. I'm writing more as a response to quite a few lists I've read in parenting publications, titled something like "10 Great Toys for the Child with Autism!" Those articles drive me crazy. They are nearly always aimed at high functioning autism, and they include toys that not only would have absolutely no appeal to a child like Janey, but would sometimes be actually dangerous for her and those like her---things with tiny pieces, things that could be eaten, etc. They also seem to be aimed at what the child SHOULD learn, not what they would enjoy. So often, they have suggestions like co-operative games, which would be great as a teaching tool at school, but are generally not at all what the child with LFA like to do for FUN. And toys should be fun. So here's my response list, one you might be able to give a relative or friend that wants to get your child a toy they (possibly, no promises!) will enjoy.
1. Fidget Toys I could almost end the list right there. The absolutely most successful kind of toy for Janey, and for a lot of kids like her, is what is called a fidget toy. It's a toy that can be handled, twisted, fiddled with, pulled on, in general, fidgeted with. The pictures tell it better than I can. I love having a box of these around for Janey, to pull out in difficult moments or what we have to wait for a bus or otherwise sit around. These toys are often sold, strangely, by office supply stores, as a lot of adults like them at their desks. I don't generally like to mention any specific sites or stores, but I've ordered from these folks at Office Playground and they have a huge selection of fidget toys and good customer service (they didn't ask me or pay me or even know I'm giving them a shout out!)
2. Pin Art Toys I have gotten Janey quite a few of these, and she loves them to death! They are fascinating to her.
3. Contained Water Toys I made up that category title as I don't know a name for this type of toy. Basically, it's a toy with water inside, one you can move around to manipulate the water, which often has drops of dye in it, or waves made from dyed water.
4. Various Fisher-Price Toddler Toys And other companies too, of course, but the ones I've found that Janey likes best are by Fisher-Price. She adores their Roll-Around toys, little balls with things sealed inside to look at and shake. And one of the biggest hits we've found is a line of toys I don't think they make any more, called Amazing Animals. They are larger sized hard plastic animals that are jointed, and make a very satisfying clicking sound when moved around.
5. Musical Toys This is where I have to be cautious. Although Janey adores music, often music toys are a little beyond her, and she completely ignores them. I've gotten all kinds of toy pianos, and she seems to hate them, because she wants her music NOW, and it's a little more than she can do to learn to play them. I've found she likes toy drums best. Anyone can drum at a starter level and make an enjoyable sound! She also SOMETIMES likes toys that play music, but in her case, if the songs are off-key or not sung as she likes, it makes her crazy, so I tend to avoid toys that might do that!
6. Sensory Blankets By this, I mean more blanket squares. These are squares of usually very, very soft fabric, with often tags or other interesting textures sewn in. They can be held, rubbed, sucked on, used good and hard and then washed. Janey loves them.
7. MAYBE Toys There are a few toys that might be great, but that you would want to check with the parent about first. They include Play-Doh, bubble stuff and bubble wands and drawing supplies. You want to make sure the child doesn't eat Play-Doh. Janey does, very much so. She loves the stuff, but she loves it like an all-you-can-eat buffet, so we don't get it. Bubble stuff is great, but again, some kids drink it. Janey doesn't, but you'd want to check for sure on that one! And art supplies----Janey has zero interest in drawing, but a lot of kids with autism do like to. If you get art supplies, keep it simple! Get paper, markers, crayons---not an elaborate paint set.
DON'T GET And of course, like with everything I write her, I'm writing from my own experience. But in general...Don't get things with lots of pieces. They are going to get lost, or eaten or at the worst choked on. Don't get games. Most of the time, kids with LFA don't understand them, and are not entertained by trying to learn them. Don't get books. It pains me to say that, because I love books more than anything. But it's a rare book that really catches on, and most books, especially pretty books you wouldn't want to be ripped up, are just going to sit on shelves. Don't get videos. Not that the kids won't love them, because they very well might, but because most kids with LFA already have about a million videos. Don't get dolls or stuffed animals. Imaginative play is not the strongest suit for kids with autism. I do know of several girls that love dolls (I'm think of you, Jamie and Reagan!) but dolls are also pretty easy to find, and another gift would most likely be more appreciated. And don't get food. Many of our kids are on special diets. Recently, we eliminated chocolate from Janey's diet, and I suddenly understand far more than I used to how hard it is when someone brings it into the house!
I imagine this list, strangely, might be one of the more controversial blog posts I've written! I know I don't speak for everyone. Please feel free to disagree and add your own suggestions. But I hope these will help someone trying to buy for the child with LFA that they love!
1. Fidget Toys I could almost end the list right there. The absolutely most successful kind of toy for Janey, and for a lot of kids like her, is what is called a fidget toy. It's a toy that can be handled, twisted, fiddled with, pulled on, in general, fidgeted with. The pictures tell it better than I can. I love having a box of these around for Janey, to pull out in difficult moments or what we have to wait for a bus or otherwise sit around. These toys are often sold, strangely, by office supply stores, as a lot of adults like them at their desks. I don't generally like to mention any specific sites or stores, but I've ordered from these folks at Office Playground and they have a huge selection of fidget toys and good customer service (they didn't ask me or pay me or even know I'm giving them a shout out!)
2. Pin Art Toys I have gotten Janey quite a few of these, and she loves them to death! They are fascinating to her.
3. Contained Water Toys I made up that category title as I don't know a name for this type of toy. Basically, it's a toy with water inside, one you can move around to manipulate the water, which often has drops of dye in it, or waves made from dyed water. 4. Various Fisher-Price Toddler Toys And other companies too, of course, but the ones I've found that Janey likes best are by Fisher-Price. She adores their Roll-Around toys, little balls with things sealed inside to look at and shake. And one of the biggest hits we've found is a line of toys I don't think they make any more, called Amazing Animals. They are larger sized hard plastic animals that are jointed, and make a very satisfying clicking sound when moved around.DON'T GET And of course, like with everything I write her, I'm writing from my own experience. But in general...Don't get things with lots of pieces. They are going to get lost, or eaten or at the worst choked on. Don't get games. Most of the time, kids with LFA don't understand them, and are not entertained by trying to learn them. Don't get books. It pains me to say that, because I love books more than anything. But it's a rare book that really catches on, and most books, especially pretty books you wouldn't want to be ripped up, are just going to sit on shelves. Don't get videos. Not that the kids won't love them, because they very well might, but because most kids with LFA already have about a million videos. Don't get dolls or stuffed animals. Imaginative play is not the strongest suit for kids with autism. I do know of several girls that love dolls (I'm think of you, Jamie and Reagan!) but dolls are also pretty easy to find, and another gift would most likely be more appreciated. And don't get food. Many of our kids are on special diets. Recently, we eliminated chocolate from Janey's diet, and I suddenly understand far more than I used to how hard it is when someone brings it into the house!
I imagine this list, strangely, might be one of the more controversial blog posts I've written! I know I don't speak for everyone. Please feel free to disagree and add your own suggestions. But I hope these will help someone trying to buy for the child with LFA that they love!
Tuesday, July 15, 2014
Ten ideas for all autism organizations out there---what would REALLY help!
The last few days have been, to be frank, awful. Janey is crying or screaming pretty much every waking moment. I hope she's been happier at school, but she got off the bus crying today. She has a good week last week, which ended the minute the weekend started, but I had hoped the weekdays would be good. They aren't. I've been feeling fairly depressed. The other night, trying not to cry, I sat outside and thought. My first thought was "Nothing would help. There is nothing that would help" But then I thought more, and thought how wrong that is. There is several things that would help. They are things that I can't do alone, but I think they are possible. I thought I'd put them out there, in case anyone from an autism fundraising organization ever by chance reads this. Here is what someone in the trenches, deep in the trenches, wishes you'd spend money on.
1. A well-staffed, well-run, free or very low cost respite center.
2. Emergency help that parents can turn to in a true mental health emergency
3. A free lending library of developmental and sensory toys suitable for kids with autism.
4. Specific instructions on best practices in autism parenting, without a biased leaning toward any certain approach.
5. True year-round schools
6. Recreational activities for children with autism---not once a year Special Olympics, not the occasional party, but affordable and well-taught lessons and fun---swimming lessons, music lessons, dance lessons, art lessons...
7. Education for the general public---maybe a series of documentaries in prime time---that shows the FULL range of autism, not some amazing very high functioning handpicked examples
8. Nights at local restaurants, museums, stores and more for families with autism, where the occasional scream or hand-flap or tantrum will be just part of the jolly background noise
9. Education for classroom aides, who often wind up doing much of the hands-on care of autistic kids at school.
10. Research not into causes or prevention, but into TREATMENT---medications, therapies, diets, etc.
That's my list. Any one of the items would make a different in my life personally, and I think in the lives of many of us out there. Like most parents, I'm not looking for a handout, not looking for money or special treatment. I am looking for help that I desperately need to be able to raise my child. I might write more about each of these wishes in the future, but just listing them for now felt good. Even if none of them will happen, it's better to know there is something that COULD help. Let's challenge every autism organization out there to help---to remember we need help that is hands-on, respite-giving and affordable. Desperately.
1. A well-staffed, well-run, free or very low cost respite center.
2. Emergency help that parents can turn to in a true mental health emergency
3. A free lending library of developmental and sensory toys suitable for kids with autism.
4. Specific instructions on best practices in autism parenting, without a biased leaning toward any certain approach.
5. True year-round schools
6. Recreational activities for children with autism---not once a year Special Olympics, not the occasional party, but affordable and well-taught lessons and fun---swimming lessons, music lessons, dance lessons, art lessons...
7. Education for the general public---maybe a series of documentaries in prime time---that shows the FULL range of autism, not some amazing very high functioning handpicked examples
8. Nights at local restaurants, museums, stores and more for families with autism, where the occasional scream or hand-flap or tantrum will be just part of the jolly background noise
9. Education for classroom aides, who often wind up doing much of the hands-on care of autistic kids at school.
10. Research not into causes or prevention, but into TREATMENT---medications, therapies, diets, etc.
That's my list. Any one of the items would make a different in my life personally, and I think in the lives of many of us out there. Like most parents, I'm not looking for a handout, not looking for money or special treatment. I am looking for help that I desperately need to be able to raise my child. I might write more about each of these wishes in the future, but just listing them for now felt good. Even if none of them will happen, it's better to know there is something that COULD help. Let's challenge every autism organization out there to help---to remember we need help that is hands-on, respite-giving and affordable. Desperately.
Sunday, July 13, 2014
Dread at Vacation's End
Tony had a week's vacation, starting on the 4th of July. He goes back to work tomorrow. I am feeling dread at the thought. It's been so good having him home. Taking care of Janey is a two person job, often, because no one person can do it for long alone. When she doesn't sleep, whoever stays up with her desperately needs to sleep the next day. When she screams for hours, we need to tag team, because if one person alone cares for her, it becomes overwhelming in the extreme. Even when she is happy and cheerful, she needs two sets of eyes, because if one person needs to do something like go to the bathroom or fix lunch, the other person needs to be watching Janey to make sure she doesn't try to get out the door, or try to eat some non-food item, or try to bite herself or her brothers or the cats or whatever. Of course, sometimes we do have to care for Janey one on one, and we do it, because we have to. But after having 10 days in a row of Tony home, I'm dreading the solo shift.
Luckily, Janey is going to summer school, so if she doesn't sleep, I can catch a nap once she goes to school. Summer school got off to a very good start last week in most ways. Janey cheered up to an amazing extent after her first day Monday. She likes going to school---she needs that routine, that structure. She stayed cheery and enthusiastic all week, until, like clockwork, Friday afternoon. Then she started the screaming and biting again.
My dread is mixed with frustration at myself. I feel like every year, I have less energy and drive. I've been worn down. As Janey gets older and tougher to handle, I get more easily discouraged. Yesterday was a good example. I was taking Freddy to a friend's house, with Janey in the car, and I tried to get myself to take her to a nearby splash park. I just couldn't do it. I couldn't make myself do it. The last time we went there, Janey was stared at constantly. She was much bigger than the other kids, she was talking to herself, and occasionally she took a notion to go sit on the lap of another mother that caught her eye. At one point, a little boy, after trying to engage her in play, used the "r" word about her. Janey didn't hear, or if she did, didn't understand, but I did. I told myself yesterday to ignore all that, to be tougher, to just make myself go anyway. But then my mind started thinking about if Janey screamed there, if she tried to bite another child, if she ran away from me, and I just couldn't do it.
Lest I sound like a sad sack, there have been some nice moments with Janey lately, to be sure. Yesterday she said "You want to read a book!" meaning she wanted me to read her a book. She wasn't holding a particular book---she just wanted to be read to. That made me very, very happy. She is enjoying being read to so much more than ever before. The smile on her face each day she got off the bus last week was a beautiful thing. On Thursday, Tony and I went alone to a zoo we like, and had William get Janey off the bus, and his report on how she did was overwhelmingly positive. When she is happy, everyone's happy. When she's not happy, ain't nobody happy, as the saying goes. So we continue our quest without end to figure out how to keep her happy.
Luckily, Janey is going to summer school, so if she doesn't sleep, I can catch a nap once she goes to school. Summer school got off to a very good start last week in most ways. Janey cheered up to an amazing extent after her first day Monday. She likes going to school---she needs that routine, that structure. She stayed cheery and enthusiastic all week, until, like clockwork, Friday afternoon. Then she started the screaming and biting again.
My dread is mixed with frustration at myself. I feel like every year, I have less energy and drive. I've been worn down. As Janey gets older and tougher to handle, I get more easily discouraged. Yesterday was a good example. I was taking Freddy to a friend's house, with Janey in the car, and I tried to get myself to take her to a nearby splash park. I just couldn't do it. I couldn't make myself do it. The last time we went there, Janey was stared at constantly. She was much bigger than the other kids, she was talking to herself, and occasionally she took a notion to go sit on the lap of another mother that caught her eye. At one point, a little boy, after trying to engage her in play, used the "r" word about her. Janey didn't hear, or if she did, didn't understand, but I did. I told myself yesterday to ignore all that, to be tougher, to just make myself go anyway. But then my mind started thinking about if Janey screamed there, if she tried to bite another child, if she ran away from me, and I just couldn't do it.
Lest I sound like a sad sack, there have been some nice moments with Janey lately, to be sure. Yesterday she said "You want to read a book!" meaning she wanted me to read her a book. She wasn't holding a particular book---she just wanted to be read to. That made me very, very happy. She is enjoying being read to so much more than ever before. The smile on her face each day she got off the bus last week was a beautiful thing. On Thursday, Tony and I went alone to a zoo we like, and had William get Janey off the bus, and his report on how she did was overwhelmingly positive. When she is happy, everyone's happy. When she's not happy, ain't nobody happy, as the saying goes. So we continue our quest without end to figure out how to keep her happy.
Wednesday, July 9, 2014
Incredibly Little Sleep
How little sleep can people survive on? Janey seems to have taken on that question with a vengeance lately. She is sleeping less and less and less. Since my chocolate vow, she's had no chocolate, and she seems less manic and much happier, but whatever was affecting her sleep is still affecting it. The last three nights, she has slept about three hours a night. She goes to sleep around 10 and wakes around 1. Then she's awake the rest of the night.
We have taken all the steps we can think of to deal with this, of course. We unplug all media at night now, so she can't watch TV or YouTube. We lock the doors, which for now keeps her from going out of the house. She is on medication that for most people, would cause better sleep. We have tried melatonin. We've done what we can think of, but still, she just isn't sleeping.
And of course, neither are we. I think I sleep some in minute-long bursts, because I can't help myself, but in general, I'm awake. Tony is home this week on vacation, and so I'm napping during the days and letting him get some sleep he needs. Janey is going to summer school, and she is happy with that---hopping on the bus cheerfully and coming home in a good mood. Unless they are letting her sleep all day at school and not telling us (which I doubt is the case), she's up all day, and for the last few days anyway, perfectly happy.
Deprived of TV during the night, Janey uses her resourcefulness and recites videos. She walks around in a loop, through the kitchen, living room and bedroom, reliving Kipper episodes, mostly. She says the same lines for ten or fifteen minutes, and then switches. She goes to sleep in her bed, but during the night, comes to our bed and wants us to go to her bed. We try not to do that, but when you haven't slept for hours, anything that might possibly help her sleep can start to seem pretty appealing, and so we do a bed swap, until the next time she decides to switch again.
From what I've read about manic episodes, I do think that might be what these sleepless periods are. Janey seems to have endless energy during them, and her mind seems to be in overdrive. She talks non-stop in delayed echolalia. I think in the middle of these monologues is when I catch a moment of sleep, and then when she pauses for air, I wake up to check what she is doing.
Somehow, even this incredibly little amount of sleep isn't as tough as the days when Janey cries all day, but it starts to catch up with me quickly after a few days. I am glad I don't have to drive any place, with Tony home. I am not getting anything done during the day. Words are coming more slowly to me even writing this than usual. I'm living in a bit of a haze.
I don't think this will last forever. We've seen this a few times before, and when Janey comes out of it, she sleeps a very lot for a few days---naps half the day and sleeps long nights. We just have to get through it. She's timed it well, anyway, to be during Tony's vacation. I hope it's over by next week. My biggest fear is that I am wrong, and it WILL last forever. I am not at all sure how I could handle that. I'm too sleepy to full think it out, which is probably a good thing for my sanity.
We have taken all the steps we can think of to deal with this, of course. We unplug all media at night now, so she can't watch TV or YouTube. We lock the doors, which for now keeps her from going out of the house. She is on medication that for most people, would cause better sleep. We have tried melatonin. We've done what we can think of, but still, she just isn't sleeping.
And of course, neither are we. I think I sleep some in minute-long bursts, because I can't help myself, but in general, I'm awake. Tony is home this week on vacation, and so I'm napping during the days and letting him get some sleep he needs. Janey is going to summer school, and she is happy with that---hopping on the bus cheerfully and coming home in a good mood. Unless they are letting her sleep all day at school and not telling us (which I doubt is the case), she's up all day, and for the last few days anyway, perfectly happy.
Deprived of TV during the night, Janey uses her resourcefulness and recites videos. She walks around in a loop, through the kitchen, living room and bedroom, reliving Kipper episodes, mostly. She says the same lines for ten or fifteen minutes, and then switches. She goes to sleep in her bed, but during the night, comes to our bed and wants us to go to her bed. We try not to do that, but when you haven't slept for hours, anything that might possibly help her sleep can start to seem pretty appealing, and so we do a bed swap, until the next time she decides to switch again.
From what I've read about manic episodes, I do think that might be what these sleepless periods are. Janey seems to have endless energy during them, and her mind seems to be in overdrive. She talks non-stop in delayed echolalia. I think in the middle of these monologues is when I catch a moment of sleep, and then when she pauses for air, I wake up to check what she is doing.
Somehow, even this incredibly little amount of sleep isn't as tough as the days when Janey cries all day, but it starts to catch up with me quickly after a few days. I am glad I don't have to drive any place, with Tony home. I am not getting anything done during the day. Words are coming more slowly to me even writing this than usual. I'm living in a bit of a haze.
I don't think this will last forever. We've seen this a few times before, and when Janey comes out of it, she sleeps a very lot for a few days---naps half the day and sleeps long nights. We just have to get through it. She's timed it well, anyway, to be during Tony's vacation. I hope it's over by next week. My biggest fear is that I am wrong, and it WILL last forever. I am not at all sure how I could handle that. I'm too sleepy to full think it out, which is probably a good thing for my sanity.
Sunday, July 6, 2014
NO MORE CHOCOLATE EVER...that's the plan, anyway...
I am a slow learner at times. If you look at all my posts with the tag chocolate (which you can do here, if you are in the mood), you will see that over and over and over, we have been shown that chocolate has a huge effect on Janey. It makes her not sleep, it makes her manic, it makes her crazy. And still, we sometimes let her have chocolate. I am not sure why, except that she loves it, and that chocolate is all over. It's a tough thing to totally eliminate. Another reason, which probably gets more to the root of it, is that I am for whatever reason always overly skeptical of food allergies or sensitivities. I am not sure why. My mother and sister have food allergies, which I have seen in action, and I know some food allergies can be deadly. But still, I continue to follow my general middle of the road type philosophy---a little bit of anything non-poisonous doesn't really hurt. Well, with all of you as my witness, I am finally going to try to get serious about chocolate. NO MORE CHOCOLATE FOR JANEY.
Here's what went down. On Wednesday, when I took William to work at Whole Foods, Janey and I went in for a bit to get a few things. She spotted something we'd bought a long time ago---a 12 pack of organic chocolate milk boxes. I said no, not so much for the chocolate but because I wasn't really there for a big shop. She handled it. But then Thursday, again we went into the store, and she led me straight to the chocolate milk, and said "I want chocolate milk. I want to buy that. Put it in the cart" That is a very, very unusually good string of sentences for Janey, and it is almost impossible for me to refuse her when she works that hard to tell me what she wants. So I bought them. I wasn't even thinking about how chocolate affects her, believe it or not. I didn't think she'd really drink much of the milk. She's been off chocolate milk and milk in general for a while. However, she surprised me by being VERY into the milk. In the course of Thursday, she probably had 6 servings of it. Which I allowed. Because I am not very quick on the uptake, or something.
So-----Thursday night into Friday. About 3 hours of sleep, tons of screaming, agitation, tears and fits.. Friday, the 4th---a day from hell. Screaming all day, no nap really although she hadn't slept, the worst day we'd had in months. Friday night---very little sleep again. Also Friday night---finally, the realization---this might have something to do with all the chocolate milk. The milk was hidden. Saturday morning---still hellish. Screaming at the store until we had to leave, screaming at home until we all felt ready to cry. In desperation, I took Janey for an outing to the Trailside Museum, a little outside zoo/nature preserve near Blue Hill, close to us. And finally, I think the chocolate was out of her system, or walking around outside helped it get out. She was a delight, happy and cheerful. And was so the rest of the day. And she napped. And she slept well last night. And she woke up happy.
Of course, because I am a skeptic, I still am not sure of the connection, but I'm surer than I've ever been about a food connection. For whatever reason, Janey just can't handle chocolate. This isn't the case for caffeine. in general. We often let Janey have some coffee (which is something very common in Italian culture) and although I am not big on soda, she has certainly had a Coke or two, and this doesn't seem to affect her at all. It's just chocolate. And even a very small amount, like a few M&Ms, can set her off. I don't know what might be in chocolate that isn't in other things, but there must be something.
So, from now on, we are going to treat chocolate like she has an allergy to it. We will not have chocolate in the house. I will ask the schools not to give her chocolate. We won't buy chocolate anything. That won't be hard for me, as I am not a big chocolate fan, but Tony loves it, and the boys like it pretty well, but they can still have it, out of the house. We'll see how it works out. If it prevents days like we had this week, it's a small price to pay.
Here's what went down. On Wednesday, when I took William to work at Whole Foods, Janey and I went in for a bit to get a few things. She spotted something we'd bought a long time ago---a 12 pack of organic chocolate milk boxes. I said no, not so much for the chocolate but because I wasn't really there for a big shop. She handled it. But then Thursday, again we went into the store, and she led me straight to the chocolate milk, and said "I want chocolate milk. I want to buy that. Put it in the cart" That is a very, very unusually good string of sentences for Janey, and it is almost impossible for me to refuse her when she works that hard to tell me what she wants. So I bought them. I wasn't even thinking about how chocolate affects her, believe it or not. I didn't think she'd really drink much of the milk. She's been off chocolate milk and milk in general for a while. However, she surprised me by being VERY into the milk. In the course of Thursday, she probably had 6 servings of it. Which I allowed. Because I am not very quick on the uptake, or something.
So-----Thursday night into Friday. About 3 hours of sleep, tons of screaming, agitation, tears and fits.. Friday, the 4th---a day from hell. Screaming all day, no nap really although she hadn't slept, the worst day we'd had in months. Friday night---very little sleep again. Also Friday night---finally, the realization---this might have something to do with all the chocolate milk. The milk was hidden. Saturday morning---still hellish. Screaming at the store until we had to leave, screaming at home until we all felt ready to cry. In desperation, I took Janey for an outing to the Trailside Museum, a little outside zoo/nature preserve near Blue Hill, close to us. And finally, I think the chocolate was out of her system, or walking around outside helped it get out. She was a delight, happy and cheerful. And was so the rest of the day. And she napped. And she slept well last night. And she woke up happy.
Of course, because I am a skeptic, I still am not sure of the connection, but I'm surer than I've ever been about a food connection. For whatever reason, Janey just can't handle chocolate. This isn't the case for caffeine. in general. We often let Janey have some coffee (which is something very common in Italian culture) and although I am not big on soda, she has certainly had a Coke or two, and this doesn't seem to affect her at all. It's just chocolate. And even a very small amount, like a few M&Ms, can set her off. I don't know what might be in chocolate that isn't in other things, but there must be something.
So, from now on, we are going to treat chocolate like she has an allergy to it. We will not have chocolate in the house. I will ask the schools not to give her chocolate. We won't buy chocolate anything. That won't be hard for me, as I am not a big chocolate fan, but Tony loves it, and the boys like it pretty well, but they can still have it, out of the house. We'll see how it works out. If it prevents days like we had this week, it's a small price to pay.
Friday, July 4, 2014
How's It Going? Various Answers...
I saw an acquaintance the other day in a store, and she asked "How's it going?" I of course gave the answer you give in that circumstance---"Good! How are you?" But when I got home, I started thinking about how I am really doing. There are two answers to that.
The first is the raw one. How's it going? Not well, really. I am feeling more overwhelmed than usual lately. This is probably directly related to Janey's sleep. It's been awful lately. Last night she slept from 1:30am to 5am. That was it. She is understandably crazy today, but still won't sleep. We are to blame for the extent of this particular night's insomnia, probably, due to a lack of chocolate vigilance, but overall, her sleep has been awful. A lot of days have passed in a haze that is caused by sleeping very little at night, for her and for us.
Her behavior has been volatile lately also. It's the tough time of year, between regular school and summer school, when there is no rhythm to the days. Both boys work, so sometimes they are home, sometimes not, Tony is now on vacation for a week (thank goodness) but last week, with the boys in and out and Tony at work during the days and Janey and me at loose ends---it wasn't good. Janey freaked out regularly, and her freaking out is tougher and tougher. It involves a lot of biting of herself, flailing around that often accidentally or not hits me with elbows or head, flinging things in anger, trying to break things, all that fun. And of course screaming---loud, insane sounding screaming.
I could do better with her, but frankly, a lot of days I'm too tired. If I don't sleep, I am not in a good way. This is the case for everyone, but I have a thyroid that barely functions, even on close to the highest dose of thyroid replacement given, and without sleep, I seem to exist in a zombie state. I just try to get through the day. So we do little things---a walk to the store, playing outside in water, watching YouTube, reading to her when she lets me. The other day we went to a movie that the local autism agency, TILL, hosted. It was the first time Janey had ever been to a movie theater, and she did fairly well---she lasted about 40 minutes. That didn't exactly eat up the day, but I felt better having done SOMETHING with her.
I think I've reached a point, after about 7 years of the autism parenting life, that I am depleted. I am out of enthusiasm, at least for now. I am not as able to rally any more. I love Janey more than ever, and that love makes it even harder, because I am sad for her. I am sad that she is so unhappy. I am sad she is not making progress. I am sad at the limits autism has placed on her life.
However, the second answer to the How's It Going question is the one I need to focus on. The boys like to talk about first world problems, and they are so right. We have enough to eat. We have a place to live. We have medical care. We have schools. I have a wonderful husband with a steady job. I have two sons that anyone on earth would be proud to have, sons with an unlimited and bright future. I have books and word games and thousands of movies and TV shows I've never seen and would like to see. I have my cats. I have some amazing friends. I have so many things that many people in this world will never have. And to quote the kids again, YOLO. You only live once. Despite it all, I am extremely lucky, and that is the answer I should give when asked how it's going. I can't say I always will. I can't say I always remember how lucky I am. Especially when I am bone tired, I forget, and I need to try not to.
Tuesday, July 1, 2014
Screams and Smiles
That's the story of the past week. Between the screams, there's been a lot of smiles. Or depending on my mood, between the smiles, there's been a lot of screams.
Today, it's the screams I'm hearing. Janey was up a good part of the night, screaming off and on. Tony was my hero and let me sleep through much of it. She went back to sleep, as she seems to like to, left to her own devices, about 8, and slept until 9:30. I had coffee and a breathe. Then, awake, screaming. I gave her a shower, and she seemed somewhat settled down. So I tried to sneak in a sink full of dishes, just because I like that kind of wild and crazy fun. I put on music, because dishes are the one time Mama gets to listen to whatever she wants, and what I wanted was some showtunes, which Janey enjoys too. We had a good time dancing to "The Lonely Goatherd" But the next song, "One" from A Chorus Line, was not to her liking. So she had a scream-fest, went into the living room, put on a video, got mad at the video and pushed the VCR and DVD player off the shelf. They didn't break (they are low to the ground) but she knows very well how we feel about that. I was at a low ebb and screamed back. I told her to get on her bed for a time out. She had a funny look when I said that, almost a happy triumphant look. She had gotten to me. I guess every kid like that a little. I managed to finish the dishes and she only got up from the bed about 6 times, and went back each time I told her to. Then I couldn't make the time-out last any longer. So she got up and, just for fun, started screaming again. That's been our morning so far. Now she might be gearing up for a nap, which I should not let happen, but I am going to let happen.
A few days ago, we had a great day going to NH to the camp (Maine talk for a cabin on a lake) of old friends. I saw people I hadn't seen in 20 or more years, and had a wonderful time. Janey, for the most part, was good. They had a couple boats, and she got four boat rides, her favorite thing on the earth, I think. Everyone was good to her and to us, and she was happy almost all of the car ride, or asleep (2 hours each way) It felt like a near normal person day, except for having to watch Janey every second and except for the few times she lunged at someone or pulled their hair (which they were so kind about, thank you, Mary!) We never can quite pass for a normal family, but we can almost pretend for minutes at a time, like when she was sitting in bliss on the boat.
Summer school starts on Monday. I wish I didn't long for it so much. I wish I had been able to stick to my original plan and not send her, but I don't think I would have retained my sanity. I hope it goes well. She will take the bus, so I won't see much of what is going on. Which again, I feel guilty about. But I am starting, a little, now and then, to realize that I do really have to think a little bit about not losing my mind, or my health. Caring for Janey is endlessly tough. It really is. I can tell myself it isn't, but it is. Seeing her in NH, alongside the adorable 4 year old daughter of a woman I've known since she herself was little more than 4, I was hit a little hard with the difference between Janey and other kids. Which I am sure anyone who has spent any time with her thinks "How could that not be something she sees clearly every second of the day?" But we all play games with our mind. I think when I really let myself see what a day is often like for me, it's, as I think I've said before, like when cartoon characters realize they have walked off a cliff. They are fine until they look down. I have been looking down lately. I probably have to. But sometimes I'd rather live in the fantasy world without gravity.
Today, it's the screams I'm hearing. Janey was up a good part of the night, screaming off and on. Tony was my hero and let me sleep through much of it. She went back to sleep, as she seems to like to, left to her own devices, about 8, and slept until 9:30. I had coffee and a breathe. Then, awake, screaming. I gave her a shower, and she seemed somewhat settled down. So I tried to sneak in a sink full of dishes, just because I like that kind of wild and crazy fun. I put on music, because dishes are the one time Mama gets to listen to whatever she wants, and what I wanted was some showtunes, which Janey enjoys too. We had a good time dancing to "The Lonely Goatherd" But the next song, "One" from A Chorus Line, was not to her liking. So she had a scream-fest, went into the living room, put on a video, got mad at the video and pushed the VCR and DVD player off the shelf. They didn't break (they are low to the ground) but she knows very well how we feel about that. I was at a low ebb and screamed back. I told her to get on her bed for a time out. She had a funny look when I said that, almost a happy triumphant look. She had gotten to me. I guess every kid like that a little. I managed to finish the dishes and she only got up from the bed about 6 times, and went back each time I told her to. Then I couldn't make the time-out last any longer. So she got up and, just for fun, started screaming again. That's been our morning so far. Now she might be gearing up for a nap, which I should not let happen, but I am going to let happen.
A few days ago, we had a great day going to NH to the camp (Maine talk for a cabin on a lake) of old friends. I saw people I hadn't seen in 20 or more years, and had a wonderful time. Janey, for the most part, was good. They had a couple boats, and she got four boat rides, her favorite thing on the earth, I think. Everyone was good to her and to us, and she was happy almost all of the car ride, or asleep (2 hours each way) It felt like a near normal person day, except for having to watch Janey every second and except for the few times she lunged at someone or pulled their hair (which they were so kind about, thank you, Mary!) We never can quite pass for a normal family, but we can almost pretend for minutes at a time, like when she was sitting in bliss on the boat.
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