Tuesday, January 31, 2012

M&Ms

Janey: M&Ms

Me: We don't have any M&Ms

Janey: (in the kind of loud voice people use when someone doesn't speak English) EMMM and EMMMMMs!

Me: I'm sorry, we don't have M&Ms.

Janey: Bowl!

Me: What do you want in a bowl?

Janey: M&Ms!

Me: I can't make there be M&Ms just because you want them. We don't have any M&Ms.

Janey: (climbs to open a snack bin in search of the M&Ms I am surely hiding)

Me: There aren't any in there.

Janey: CAN YOU SAY PLEASE?

Me: I appreciate you saying please, but there are no M&Ms. Maybe we can get some after school.

Janey: (in the kind of voice a parent would use talking to a child) I WANT SOME EMMMMMM and EMMMMMMs PLEASE.

Me: Maybe Pino (my brother in law upstairs) has some. Maybe Freddy can get some in a little bit.

Janey: (Intense attempt to open the locked door to the stairs to Pino's apartment. Attempt successful for the first time ever. I run over and reclose the door and relock it) I want M&Ms now.

Me: Freddy, could you please get Janey a few M&Ms before I go insane?

Freddy: I don't have time. I'm on a very tight schedule in the morning. Don't you understand how little time I have in the morning... (continues to explain this for about 3 times the time it would have taken to get some M&Ms)

Me: Just get the M&Ms. Now.

Freddy (goes upstairs and gets a handful of M&Ms)

Janey (eats a few of the M&Ms) I want fortune cookies.

Me: How can it still be only 6:15am?

Monday, January 30, 2012

Craziness thrust upon me

Thinking back on my life, I can see a theme. I don't like to stand out, to shake the boat, to do things that aren't what is expected of me. I don't think anyone made me this way. I think it's just how I'm wired. I don't like to be the center of attention. I hate the thought of someone saying about me "Wow, I can't believe she did that!" I don't want to disappoint people. I was thinking about the summer of my sophomore year at college. I had a summer job I really, really liked, as a newspaper clipper, reading newspapers and marking articles that clients wanted to get---like if the newspaper mentioned Reader's Digest, you marked it with a code, and it got cut out and sent to Reader's Digest. It crossed my mind that summer that I wished I could take a few years off from college and just work that job. College wasn't especially inspiring to me, and I liked the idea of working and making money. But I never once thought about it seriously. It just didn't occur to me I could actually do that---that I could decide to take a different path, one that some people might disapprove of.

This weekend, I had a bit of a revelation in my mind. Although I've spent my whole life avoiding standing out, looking crazy, being unexpected, craziness has been thrust upon me. Life with Janey is crazy. If I go into a store with her, people are going to look at us, because she will be making odd noises, jumping up and down, acting in ways you don't expect a normal looking 7 year old girl to act. I'm not going to follow the expected path with her. We won't be preparing for college, or anticipating her dating. We will be hoping she's someday completely toilet trained, and that she can someday be alone in a room without disaster. Whenever I take her to a new doctor, or a new dentist, or a new anything, I am going to have to give the short speech I give "She is autistic and won't understand a lot of what you are saying, or answer what you ask". Right away, I'm outside the norm. Crazy isn't the completely right word, but it's what I am picking here. I've had the crazy life thrust upon me.

And, it occured to me, that's a little freeing. It struck me I can PICK to be crazy, in cases where that will make me happy, or us as a family happy. We are already not following the groove, so we can do things we want to do without much more standing out. For example, although reasonable people might all agree one cat is fine, or at the most two, if we choose, as we have, to keep all four of our kittens that the stray we took in had, well, they make us extremely happy. It's craziness, but I have chosen it. If craziness is going to be thrust upon me, and I don't get to choose it, then I have decided that means that I can also pick to be a little crazy sometimes, if it doesn't hurt anyone and makes our family happy. We are never going to be your typical family any more. So we might as well make it an enjoyable ride along the way.

Sunday, January 29, 2012

Some great talking and thinking

Janey has had a terrific few days in terms of things she's being saying, which show things she's been thinking. I figured I should jot some of them down, because it's easy to forget this kind of great stretch when she's in a not so great stretch!

This morning, she started reciting lines from "The Three Little Pigs", which I think is almost a marker for autistic spectrum disorders, judged by how many kids on the spectrum I've heard are into it. I started playing along with it, saying "Little Pig, LIttle Pig, let me come in! Not by the...." and letting her finish, which she did with delight. Then I huffed and puffed and pretended to blow down the house and eat the piggy all up. She loved it, and when I got distracted, said "I want my game". I wasn't sure what she meant at first, but then realized she was referring to our playacting as a game! I was thrilled, both that she thought of a name of it and that she asked for more of something not concrete.

Yesterday, she had an afternoon with my dear friend Maryellen. Maryellen is one of Janey's favorite people on earth. She is really the only person outside of school that is able to watch Janey, and that I trust to do so. It's not that other people wouldn't want to try, or wouldn't like to help in that way, but I know Janey is happy with Maryellen and Maryellen is happy with Janey. Janey was thrilled to be there. When it was time to go, she had a very hard time, and it struck me I can't remember her ever fighting leaving anyplace but school in the past. She cried and clung to Maryellen, and then tried all kinds of words. She said "you are going home!" trying to pull Maryellen into our car, and then said "You had a good time!", in that she was saying something like "Didn't you have a good time? Why can't it last longer?" Maryellen and I were both close to tears at that point, I think. I love it that she can form close relationships with people other than immediate family. She is close with many people at school---her teachers, teachers in other classes, Nurse Pat (the school nurse), Mr. John (the custodian), the aide in her room, Mr. Bill, the aide from her room last year, Ms. Allie, and lots of others. But outside of school, it doesn't happen as often, and it is great to see her love for Maryellen.

She is also starting to notice our kittens, in a tiny way. It's funny how she usually relates to them. It's as if they are invisible. They can be right on her, and she does her darnest to pretend they aren't there. But lately, she does tiny things, like reach out and touch one of them gently, just to show she acknoledges they exist.

Now she is bringing me her coat, which she does when she is ready to go someplace. Not right now, but it's nice she is communicating!

Thursday, January 26, 2012

Janey and her brothers

As tough as it can be sometimes with Janey, I know it would be far tougher if it were not for the luck of her family placement. She is the youngest by 7 years (to the day!) and has two big brothers, now ages 14 and 17. If she were an only child, or had younger siblings, or siblings closer in age, I just can't imagine it. The boys make life with Janey so much easier, in many ways.

In general, my boys do far less around the house than most kids do their age. I don't think it was a conscious decision at first, but as time went by, Tony and I decided that they would have minimal housework, because they were called upon far more than most kids would be to help with their sister. That's their family contribution. Janey literally can't be left alone at all. She can barely be in the next room alone. She has very little sense of danger, and could put herself in unsafe situations very easily. Barring that, she can also make a huge mess very easily, with her diaper, with spilled liquid, with pulling stuffing out of things, with most anything available. So someone is assigned at ALL times to watch her. If I have to go to the bathroom, go to the cellar to do laundry, even just take a minute to catch my breath, someone needs to be watching Janey, and that's where the boys come in. Probably 5 or more times in a typical day, we say "You need to watch your sister for a minute". They have learned we mean RIGHT THEN, and they have seen the results if she is not watched well enough. They sometimes complain a little, or say that it's not their turn, but on the whole, they are wonderful. We try hard not to overdo this. Once in a blue moon, probably 2-3 times a year, Tony and I go out for a few hours on our own, and they babysit for real. Although we don't do this much, it's GREAT that we can if we really want to. At those times, we either pay the boys or promise them a treat like a meal out the next day, because babysitting her is a real job.

I read a book once for children about having an autistic sibling. I liked it overall, and gave it a pretty good review on Amazon. When I saw other reviews of the book, I was truly surprised. Many, many people didn't like it because of just a very few times in the book where parents seemed to use the help of siblings. One child was told by her mother that when she grew up, she might want to have an extra bed at her house so her sister with autism could sometimes visit overnight. People went crazy about that, like it was being horribly cruel to that child to make her feel "responsible" for her sister. I thought that was insane. Like it or not, the boys do have some responsibility for Janey. She is their sister, and we are a family. We've always told them that when Tony and I are gone, hopefully in the distant future, they will be the ones taking care of Janey---not necessarily having her live with them, but overseeing her care. I've gone as far as saying they should keep that in mind when picking a wife. I don't feel guilty about this, and believe me, I usually feel guilty about everything. But Tony and I both have very strong feelings about family. You take care of family, and to somehow exclude Janey from that statement would go against everything we believe in.

I think the boys do get back a lot from Janey. She can be a lot of fun to be with, at times, and overall, watching her is probably more fun than dishes or laundry or the others tasks they'd otherwise have. They have learned much compassion from her, and learned not to be scared of or dismissive of people with special needs. And they appreciate her little triumphs too. This morning, using the method of repeating it over and over for her to copy, I said "goodbye, William" to her older brother about twenty times, and after that, Janey said "Goodbye, William!" in the sweetest voice you ever heard, and I think William was close to tears. Often, after they have watched her for a bit, they report "Janey was being precious!" Amid all my constant wondering if I am doing the right things with Janey, and with my children in general, I don't have that doubt about the relationship between siblings. I think the boys are only being made more of the fantastic people I feel they are becoming by Janey. And it's nice to feel sure about something like that.

Tuesday, January 24, 2012

Conversation with Janey

Janey: I want Saw Sing. Can you say please?

Me: What is Saw Sing?

Janey: CAN YOU SAY PLEASE!

Me: I know you want Saw Sing, but I don't know what that is. (flash of recognition) Do you mean Sock Thing, from Kipper? (Kipper's sock toy)

Janey: I WANT SAW SING!

Me: Is Sock Thing Kipper? Do you want Kipper?

Janey: Do you want Saw Sing Kipper? (which means, yes, I do want Sock Thing Kipper)

Me: Okay, I'll put that on.


Take a different thing Janey wants, and that is our conversation in a nutshell. It changes very, very little. Only one other variation really exists, which we had last night...

Janey: (loud crying and screaming)

Me: Can you tell me what's wrong, sweetie?

Janey: CAN YOU TELL ME WHAT'S WRONG?

Me: Are you angry, or sad, or mad, or hungry? (Janey is often soothed by this list)

Janey: DO YOU HAVE ANGRY FEELINGS?

Me: I'm sorry you have angry feelings. What would make you feel better?

Janey: Do you want a bath?

Me: A bath would make you feel better? Okay, we'll have a bath.

Janey: We'll have a bath. Pull the curtain. (pull back the shower curtain)

That one was shortened for clarity and to edit out the long periods of it that were just hysterical crying.

This might give an idea of what Janey's talking is like. She talks, but it's very limited talking. It's repeating back things and asking for things, with rare little additions like "Pull the curtain" But it does get the point across, sometimes after a little work. I wish she could talk to tell me about her day, or comment on things that interest her, or just chat, but I am very, very grateful she can talk at all. I wish I knew how to expand her talking, but so far, nothing seems to do that well. For now, we'll take what we can get.

Monday, January 23, 2012

Child newly diagnosed with autism? Four thoughts...

I've been thinking lately about how it feels when you first hear the words "Your child is autistic". I've heard it twice (more if you count the various changing diagnosises my older son had, finally ending in no diagnosis, which I think was the correct one). It's a very, very, very horrible moment, no matter how you look at it. But I think there's a few things that if I had known them, I might have, after the first initial shock, been helped by. Here's a four item list.

1. Don't panic (or panic slowly, anyway). As the Hitchhiker's Guides to the Galaxy is inscribed, that's a big one. Your child is the same person they were the day before you got those words. They're nothing magical about them. They just describe a set of symptoms. You'll be very tempted, in those early days, to feel you have to do something RIGHT THIS MINUTE. And you will have people making you feel that way. For better or worse, there are all kinds of schools of thought about treating autism, and everyone that follows a certain school feels very strongly they are right, and wants to help you by getting you enrolled in that school of thought. There isn't a rush. This isn't always what you are told, but I truly believe it. Don't wait forever, but take a little while to think, to absorb what you were told, to gather your thoughts. If you want to read a book, one I would highly recommend is Making Sense of Autistic Spectrum Disorders by James Coplan, MD. I found it to be the most balanced, kind and truthful book I've read as a general guide. Don't tie yourself into a certain treatment that might not be right or do-able for you until you give yourself a little while to think.

2. One thing you CAN do right away, without committing to a certain school of thought----if your child is under 3, call the state's Early Intervention program. If they are 3 or older, call your local public school. Ask to have your child evaluated for services. It takes a while to get this going, so you can put in that call now. If you later decide not to use what the state or local area offers, it's not going to hurt anything to have made that call. But I think you will probably want to get these free services. I've read too many books that seem to discount public schools or EI. That amazes me. I've gotten wonderful, wonderful services from my local public school, and good services from EI before that. If nothing else, you will get a second evaluation of your child, and that can never hurt.

3. Let yourself still enjoy your child. I know at times I've felt like I couldn't do that, like all my thoughts, my energy and my time with Janey had to be focused on autism-related interactions. They don't. If there is something your child enjoys doing with you, go with it! If they are only happy in the bath, gives them 4 baths a day if you want to. If they like to watch videos, watch with them. If they like to recite facts about Thomas the Tank Engine, go out and get some Thomas books so at least they will have some fresh material. If there's a food they really like, have it more often. There will be many therapists, teachers, specialists, doctors and so on in your child's life, but only one you. Give yourself permission to enjoy that special relationship.

4. Find something that YOU enjoy doing that you will be able to do at home, in spare moments, that has NOTHING to do with autism. You are going to need that. If you like to read, hit the library. If you like to cook, get lots of staple ingredients. If you like to craft, get materials. And GIVE YOURSELF PERMISSION to let everything else go when you have a spare moment, and just enjoy yourself. The housework will still be there, but your sanity might not be, if you don't carve out that time for yourself. For me, it's word games on Facebook. When I have a minute, I play Scrabble. Facebook in general can be great---it's a way to stay in touch with friends and family without having to leave the house. Not that you are going to be home all the time, but I think you need something you do at home to be able to really use spare moments. You can't go to the Y and work out while your child watches a video or naps (unless you have a nanny or something, and most of us don't), but you can read a book, play a Scrabble round, draw a picture, whatever. Take care of yourself. There will be days you can't, and days you somehow feel you shouldn't, but you need to, to be ready for what's going to a be a long and strange trip into the future with your child.

Sunday, January 22, 2012

Thoughts on echolalia

I read an excellent book today---"Following Ezra", by Tom Fields-Meyer. I'd highly recommend it. It told of his autistic son, and was just written in such a warm and accepting and kind way. It wasn't about interventions, or causes, or social implications---it was about Ezra, and life with him. There aren't many books like that. One thing Ezra did a lot that Janey also does a lot is talk using echolalia---repeating back what she hears, either just afterward or in delayed by hours, days or sometimes months or years. The book got me thinking about this, and wondering about it. I did a little brief research, and it seems like the old thinking was that it was a bad thing, that it was just verbal stimming and it had to be eliminated, but the more current thinking is that it can lead to useful speech. I didn't find a whole lot of ideas on how best to respond to it. I do see how it can be used helpfully, as Janey's special ed teacher has showed me, with an idea that works well. Instead of saying to Janey "Say goodbye to Mama" or something like that, have someone say goodbye to me so Janey can hear---for example, the teacher will say "Goodbye, Mama!" and sometimes say it over and over, until Janey is compelled by whatever part of her makes her want to repeat things, and she says it herself. That in turn sets up a routine, and the next day it can be like she's doing delayed echolalia of her own speak when she says goodbye to me! Very cool.

One article talked about levels of echolalia, and how some is just meaningless, but other times it's used in place of speech the child isn't capable of yet. I've written a little about that before, and it's one of my favorite things Janey does. She pulls out a snippet from a video or song or occasionally something we've said, and plugs it in at an appropriate time. For example, the other day we were outside in the cloudy evening, and I tried pointing out stars to her in the clear spots, and she said "Kipper, do stars go out, like lights?"---a line directly from a Kipper video, about camping at night and it getting cloudy. I loved it. For whatever reason, it's very hard for Janey to figure out how to say things that aren't pre-scripted, so she cuts and pastes speech. It seems like a convoluted way to talk, but it works for her, at times.

This got me thinking in a larger way about aspects of autism that are just plain interesting. Things like echolalia are fascinating to me, which is something I think I have surpressed lately, as if somehow admitting parts of autism are interesting would somehow mean that I wanted Janey to be autistic, or am not doing all I can to make her not autistic. Believe me, if I could wave a wand and make Janey still be herself but not be autistic or retarded, I would. But I can't do that. And so, since this is reality, I'm going to let myself enjoy the interesting parts, just a little.

Saturday, January 21, 2012

Self-Advocacy

In my recent blog reading frenzy, I read a few autism blogs that were about self-advocacy for people with autism. It was interesting reading. Not a whole lot of it applies to Janey right now, and that's not so much because of the autism but because she is seven, and if you let most any seven year old advocate for themselves, you'd run into some fairly big problems. However, I think there were a few lessons to be learned from what I read. It made me question---do I let Janey make the choices she is able to make? What choices CAN see make? I thought about what most seven year old can choose for themselves. They choose what to wear and what to eat, to a limited extent and from a limited set of choices, they choose who to play with at recess, again from a fairly limited set, they have a voice in what toys they are given, things like that. The big area they probably do have a lot of choice with is how to send their leisure time. Or at least they do if they aren't scheduled into all kinds of lessons. I was never much into doing that, so at seven, my boys had a lot of time to choose how they spent. Freddy spent that time as he does now, playing video games. William thought about, wrote about, drew about, read about trains and other forms of public transit. So do I let Janey choose her own leisure activities?

She does pick what videos she wants to watch, within our tolerance for constantly changing the disk or tape or Netflix. She is getting close to being able to do this herself, and that might be a big step for her getting to pick her own viewing totally. The other big "toy" she likes is the iPad, and that is where I don't think I've done a great job letting her have her own fun. The iPad is for lots of things. It helps her learn at school, which is wonderful, it helps with her speech therapy, it helps her write. I truly think it will revolutionize education in some ways. But at home, I think I was seeing it also as an educational tool. And it is, but I don't need to push that aspect. I didn't make my boys spend their time at home reviewing schoolwork at that age---I was quite opposed to that. But with Janey, I watch what she does and constant try to redirect her to "useful" apps---matching letters, math "games". And she sometimes like them. But other times, she wants to just have fun. She likes Toca Boca Tea Party---she sets up the tea party over and over and over, and pours tea and passes out treats. She likes a puzzle app that I find very poorly done---pictures that seem to be randomly cut into pieces. She picks one of a bunny and does the first 5 or 6 pieces over and over, with tremendous enjoyment. At Christmastime, she played with a animated song app every chance she got. And WHY do I try to prevent this? She seems to enjoy these apps very much. She switches between them---it's not obsessive hours on one of them. I think it's partly because even though I don't feel it in my heart, I have a little bit of that frantic "She has to learn all the time! She has to get FIXED from this autism!" Also, it's partly because I can---I can switch her to another app, I can put away the iPad, and she doesn't totally have the words to tell me "Mama, I wanted to play that! I love that game!" that the boys would have at that age.

I'm not sure what to conclude here, but I think it's important I keep in mind that Janey needs to be allowed to make leisure time choices as much as possible. I'm going to try to ask myself when I have the urge to re-direct her "Would I have done this with the boys at her age? Is what she is doing really hurting her in any way, or just annoying me somehow? Is she truly enjoying herself, or just stuck?" I think I'll be changing my behavior a little.

Thursday, January 19, 2012

I can be cheerful too!

After reading other autism blogs yesterday, I was set off on a thinking trip. I can't write a totally cheerful blog---that would be a fiction blog. But I can say honestly that there are more than a few parts of raising Janey that are a lot of fun. I thought I should make another list---let's call it "Six Good Parts of Autism Parenting!"

1. Sharing her interests. Janey doesn't have the obsessive special interests that many higher functioning kids with autism do, but she has changing interests that become quite obsessive for a period of time. Most of them are videos. She adores Kipper, and we all have become pretty fond of the little dog also. We quote episodes, argue about favorites and appreciate how well done they are. We've gone through the same thing with Angelina Ballerina, Care Bears, The Wonder Pets, The Backyardigans and so on. Often it's a certain one episode she really gets into, and it can be extremely annoying at first, but strangely, sometimes after 100 viewing or so, it becomes part of your mind, and you notice cool things about it.

2. Her lack of ability to be mean. Girls can be very, very mean. I know---I was a girl. Even seven year old girls are starting to be mean---to tell their mothers they hate them, to exclude other girls, to have that ability to figure out the one thing that will hurt you most to hear and to proceed to say it. Janey doesn't do that, because she can't. I don't think she'll ever able to, and there are worse thing than having a daughter who will never be cruel.

3. The words we all pick up. Janey has limited speech, and she puts the words she does know together in unusual ways sometimes to get her point across. For example, cheese is "cheese cutter" because you cut it with a knife, which she calls a cutter. So we ALL call cheese cheese cutter now. Because we taught her to say "please" by saying "Can you say please?" that is how she says it every time---"I want cheese cutter! Can you say please?" We've picked that up---I'll say to Tony "Could you empty the trash? Can you say please?" It's simple fun for us simple folks.

4. The people you meet. Yesterday, I was having a rough day---just a depressed day. I went to pick up Janey at afterschool in a mood. But by the time I left 10 minutes later, I was feeling a huge amount better, just by spending a little time with a small percentage of all the wonderful people who care about Janey---the teacher she will have next year (thanks, Amy!), the after-school director (thanks, Michele!), a devoted parent who works tirelessly for her own special needs child and others (thanks, Dianne!)---and that's just a tiny sampling of one day. Janey brings me into the path of some great people.

5. The joy when Janey learns something. I was thinking this morning---I can't remember when either of my boys first wrote an alphabet letter on their own, or solved a math problem, or wrote a sentence, or read a book. I should remember those things, but I don't. It's because kids learn in such a rush. One day they are just starting to talk, the next they are taking pre-calculus or physics or Latin. But when Janey learns a new thing, it's cause for celebration. If she ever writes her name, or reads a sentence, it will be a landmark day. The first time I saw her doing a letter matching game with ease on her iPad, it felt like Christmas. When learning is hard-earned, you notice it, and celebrate it.

6. It's hard to put this most important wonderful part of Janey into words. I'll tell a little story. The other day, I saw a mother at school who had recently lost her mother. I was trying to find the words to tell her how sorry I was. While I was doing that, Janey walked up next to her and held her hand. I am sure Janey didn't understand anything we were saying, but somehow, because that was what she wanted to do, she did the perfect thing. The mother wrote me a note that brought me to tears about what that meant to her. When Janey hugs you, it can break your heart with happiness. She does nothing to be polite, or socially correct. She seems to be able to know what people are kind at heart, and to love them for it. More than a few people have been touched by Janey. I feel almost phony writing that line, because it goes against my "just the facts ma'am" line on life with autism, but it's too true not to include.

And so now, off to attend to my little sweetheart, who has been poking me with a spoon for the past half hour and demanding "purple ice cream". Never let it be said I never wrote a cheerful post!

Wednesday, January 18, 2012

Other blogs

Today has been a tough day for me, for no external reason except being tired, which is my normal state, pretty much. I'm just feeling it all more than usual. For some reason, I started searching around for other autism blogs. I figured there must be some other ones out there that I could read that reminded me of myself and of Janey---misery loves company, I guess. But I couldn't find any. There are millions of autism blogs, it seems, and I KNOW there are a few other mothers with kids like Janey (and I am thankful every day for knowing that!) but the blogs were...well...let's do a list!

1. They were fancy. They had great graphics, and all kinds of pictures, and little statistics at the side, and awards, and animations and neat wallpaper and all kinds of do-dads. I am not good at decorating in real life, and I guess my blog reflects that.

2. They were upbeat. Not every post, but in general, they were cheery. They were forward looking, seeing great improvements all the time, excited about new approaches, thrilled about achievements, just so happy sounding. Maybe I am just a down person, although I have not usually been seen as such. But it seems like bloggers are supposed to be a lot more positive than I am.

3. They weren't afraid to speak well of themselves. I saw more than a few that had mothers that referred to themselves as "Super-Autism Moms!" That amazed me. I guess my Maine upbringing featured many reminders that you don't "show off" like that. If anything, you should always put yourself down a little, and it will be understood that you are doing that. But I guess that's not the way it's done in Bloggerville.

4. They had unified plans for the "battle against autism". They most all seemed to have picked a plan the day their child was diagnosed, and they work relenetlessly to put that plan in place. Whether it's ABA, or diets, or chelation, or intensive floortime, or whatever, they are wholeheartedly devoted to the single-minded goal of FIXING THAT CHILD! I felt like a huge slacker and a pacifist in the battle against autism.

5. Their kids were incredibly bright. So many blogs mentioned that---how their child at 2 could read, name all the presidents and elements and states, build rockets---you know I'm overstating here, but you get the picture. Their child was autistic, but not, you know, that BAD kind of autistic that is also retarded. Not that kind, but the so much more trendy high-functioning kind.

6. Schools, doctors, Early Intervention, society at large---they were all enemies, trying to do what they could to somehow deny their special child the help they needed. This wasn't universal, but it was out there a lot. It was them (their own family and others who agreed with whatever their "recovery" approach was) against the world. I love Janey's school, which is probably not the thing to do if I want to be one of those cool autism moms.

7. They DID things---things outside the house, things besides just getting through the days with their children. They went on getaway vacations, dinners out, fundraising events, conferences, opportunities to take great scrapbooking pictures, all kinds of things. They somehow didn't seem tied to the house by the drain on emotions and finances that I thought came along with this journey to Holland.

8. They were just in general a lot cooler than I was. They were the popular crowd, the insiders, the ones that have it all together. Autism has entered their life, but as luck would have it, right when autism is very cool!

I hope anyone reading this list sees that it's a bit satire-ridden. Of course all the blogs weren't totally like that---it's just how it felt to me on a down, depressed day. I know there are many, many, many people out there living a life like mine. They probably just don't have the energy to get to the keyboard. I've always written---writing is my break, my release, so that's how I use the limited store of energy I have. Others with lives like mine might cook, or sew, or watch TV, or just lie on the bed and stare at the ceiling. And they have every right to. Writing is how I survive, some days. So if you are reading, thanks, and please don't take me too seriously when I'm in this kind of mood!

Tuesday, January 17, 2012

A Fantasy

I wasn't sleeping tonight, and my mind was drifting. I started thinking about what would be the dream way to get help with Janey, and help for family respite, and help for all other kids with autism. It started with the daydream we all have, about having billions of dollars, but I was thinking how although that would be nice, no amount of money would automatically translate into any respite for families with an autistic child. I thought "well, what would?"...

Here's my fantasy. Build a autism respite center. This would be a center designed especially for autistic kids. It would have areas dedicated to all kinds of things that kids with autism are drawn to---a water area, a sensory area, a video area, a jumping area, a iPad area, a room full of pillows, a snack area, an outdoor fenced in running place---you get the picture. It would be staffed with a variety of people---specially trained teachers, nurses, volunteers with an interest in autism, high school students, PTs, OTs, speech therapists---anyone who enjoys working with children with autism. Then issue vouchers to every parent in the state with a child with autism, to be used for a certain amount of hours at the center per year. The hours could be scheduled in advance, but some would also be able to be used on an urgent as-needed basis. Each parent would have already filled out information about what their child likes, any medications or allergies, emergency numbers, all that. They bring their child to the center, check them in, and GO. For the hours the child is at the center, the parents know the child is being cared for, is most likely having fun with all the special areas, is safe and contained. So---the parents can spend time with their other kids, or go shopping, or go to a movie, or just go home and sleep. They would be called if there was an emergency, but otherwise, they would have a nice long break. They'd pick up the child later on, refreshed,everyone happy.

I have other ideas for this center---a club for siblings, a room for parents who might not feel comfortable yet leaving the building (but with NO obligation for parents to stay there if they do want to leave), a toy exchange area, a volunteer training program---I have lots of ideas!

I think this is a do-able fantasy. The respite would cost less and be more co-oridinated, overall, than giving each parent money for respite and making them find it on their own (not that that kind of money even exists either, right now). The center would only have to be open during non-school hours---weekends, vacations, summer. I think much of the staffing could be volunteer, as many high schools now require community service, and many members of the community would like to help children with autism, but just don't know how.

One of the main focuses of this center would be the parents! I would want it to be a stress-free place for parents to go. The parents would NOT be asked to volunteer. They could, if they wanted to, but they would never be asked to. Most parents of a child with autism put in more time than anyone could imagine already dealing with autism. This center would be for them as much as the child. If local businesses wanted to, they could give gift certificates to the center to be given to parents. Imagine dropping off your child, and getting a surprise gift certificate for a nice dinner out while your child was cared for!

Siblings need respite too. Perhaps there could be a special sibling day, when the brothers and sisters get to go to the center for a party just for them. Some days could also be for the sibling to attend with their autistic brother or sister, but NOT be asked to help with them.

It's a dream. In reality, I can picture all kinds of problems and issues, but I'm not going to think about those right now. I'm just going to try to get back to sleep daydreaming about Janey having the time of her life at this imaginary center, while my husband and I spend an entire day just relaxing. Wow.

Sunday, January 15, 2012

Tired out

The last few days, I've just been weary. I got a cold last month that just hung on and on, and somehow it seems to have drained my enthusiam and energy more than it's been in a while. Janey has been off and on---she had a tough week last week, lots of crying, she seems happier this week, but manic at times, lots of mischief and in need of constant vigilence. And although I've said it before, I'm feeling it in my bones lately. This will never end. Not ever. I am in my mid-40s, and I am never going to have a break. Never, ever, ever. I am not going to some day wake up with the energy to get the house totally organized, work harder at making money, go out and mingle and be sociable. It's never going to happen. What I have now is about how it's going to be. That's life with a disabled child. It's the reality of it.

And then of course I read this back and start editing it mentally, wanting to reassure myself and anyone reading this that it's not really that bad. I have school, which is wonderful. Janey loves afterschool, and I have a block of time during school days when I can rest, and should be able to get more done in. I have a supportive husband and older kids that help sometimes. Janey is healthy, she is often sweet, she usually sleeps fairly well. There are many people who have it tougher than I do. I know that. Sometimes it helps to remember that. Sometimes it doesn't. Sometimes I just wish Janey wasn't autistic. I wish she was learning to read, making friends, sassing me with pre-puberty early sassiness, developing her own interests, being all the ordinary and wonderful things that a "normal" 7 year old is. I wish I didn't have to still change diapers. I wish I didn't have to watch her every second to make sure she doesn't put small things in her mouth. I wish she talked in full sentences. I wish she didn't repeat video lines all day. I wish she didn't cry for reasons that are known to none for hours at times. I wish she didn't laugh at nothing all the time. I wish I could take her into the library or grocery store or post office without fear she will melt down and scream. I wish I could look forward some day to a wedding for her, to her children, to her going to college, to her even getting a real high school degree. I wish I didn't feel this tired all the time, from the constant strain of being the mother of a toddler in a 7 year old's body, and knowing that this is just how it is.

She is beautiful. She is sweet. She surprises me often with strange little quirky pockets of isolated knowledge. She is my joy. But I am so, so, so tired.

Monday, January 9, 2012

Tantrum

Sometimes we know the cause, sometimes not. Today, not. Janey screams, loudly. I go over and hold her hands, as sometimes when this starts, the hands get angry---they throw things, rip things up, toss food. She is angry to have her hands held, and jumps up and down screaming, and looking at me in utter anger. She bars her teeth, she yells, she is a picture of fury. I stay calm, which is tougher than most anything I've done, but it does no good for both of us to get out of control. I say the words that sometimes work "You are very angry. You have angry feelings, and sad feelings, and mad feelings, and scared feelings". She likes the list of feelings, and screams after me "I have angry feelings!" but it doesn't calm her down. I work to outlast her, to talk calmly as long as I can. She finally, finally gets tried of the endless pounding of her feet. She moves away as I let go of her hands, and goes to the fridge. I watch as she easily opens the bungie cord we have used for a few years to keep her from taking out food and tossing it. She gets out a containor of cocktail sauce, and goes to get a spoon, and hands it to me. I saw the line I am sure she's as bored of as I am "We don't eat that all by itself". She is furious. I put it back, offer her many alternative foods, but that is just an insult to her. Finally she accepts "Cheese cutter", her term for a slice of the big block of cheddar we always have ready. She eats it, and I draw a full breath finally.

It was a good Christmas and New Years. Janey had one of her longest happy stretches ever, and it was much appreciated. It ended last week, and this weekend wasn't fun. I hope it's a short stretch this time around. I see progress in so many ways, but other ways, none at all. She understands what we say more, but that often just leads to her being angry. She knows now what we mean when we say "no more videos" or "you don't need any more chips" and she doesn't like the meanings. She likes school, and after school, and realizes on the two days she doesn't have after school that we are somehow cheating her, and is angry all the way home. She is angry a lot of the time, at a world she is starting to understand is full of "no"s. But she is happy at times too, and when her requests are something we can give her, her smile is an incredible treat.

Happy New Year!